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Autism and the double empathy problem: Implications for development and mental health

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Autism and the double empathy problem: Implications for development and mental health

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On "Person-First Language": It's Time to Actually Put the Person First

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On "Person-First Language": It's Time to Actually Put the Person First

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On "Person-First Language": It's Time to Actually Put the Person First

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The "person-first language" rule was created to put the person first, not a disability or diagnosis. But it doesn't.

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Understanding Social Cognition in Autism | Diverse Intelligences | Stories of Impact

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Understanding Autism - Free Online Autistic Course - FutureLearn

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Enrol to this free CPD-certified autistic course from the University of Kent to understand more about autistic people from autistic perspectives.

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What did you do this morning?
* Thought about what to make for your evening meal?

* Packed your bag for work?

* Wrote a shopping list for your weekend shop?

* Got out clothes ready for the gym this evening?

* Remembered the dog must go to the vet tomorrow and he needs to not be fed this evening?

* Thought about what to wear in case it rains later?

* Planned what time to leave the house to catch the train?

* Got annoyed as you are waiting in a queue?

All these things need planning. We need to decide what's important/urgent/or can wait till later. We need to decide what not to do as well as what we need to really do straight away...

In order to operate effectively in education, home or employment we need to think and plan both for the short term and over long periods of time. These skills allow us to prioritize our lives.

When life is ordered and we know what is happening to us and it can make us feel calm and in control. But when things don't go our way even when it is not intentional to be disorganized it can make us feel a lot of things.. chaotic, anxious, shameful, exhausting, and hugely irritated.

This is especially true if plans don't work or you lose possession, miss an appointment, or do not finish work you had planned to do by a certain time. This is especially hard when this happens to you repeatedly. We can all genuinely mean to remember but still not remember to remember!

It can also be so frustrating to start out with great intentions. We want to try out strategies such as using a to-do list or placing reminders around the house but we can fall after the first hurdle. The Post-it notes begin to blend in with the wallpaper and the alarm to remind us can be switched off and we go back to sleep.

Others around you can reinforce your negative feelings and lower self-esteem. They may also make statements such as " she's always late".... "don't give her the keys she'll lose them" which just makes you feel even worse.

**WARNING** to those who are super organized if you don't know what it is like to find it hard to prioritize and plan you can come across as quite condescending!!

So what is this all about?
Executive functioning skills (EF)
EF is involved in handling novel situations outside the domain of some of our 'automatic' psychological processes that could be explained by the reproduction of learned schemas or set behaviors. We also have skills like doing our teeth in the morning that we can do this on 'automatic pilot' and can manage to think of other things at the same time. We have done them again and again and again and so they require little of our focus or attention.

EF is:" A cluster of skills that are necessary for efficient and effective future-orientated behaviour"

(Welsh, cited in Diamantopoulou et al,2007).

I think it's funny that we use metaphors to describe this part of the brain such as it being our controller or...

* Conductor

* Cook

* Driver

* Chief

* Pilot

Without executive functioning skills it is hard to be an executive unless you have a Personal Assistant to help you. In reality, we don't all have a PA(but would love to!) and it doesn't happen until you have got to a position of authority. This is why for some people the opportunity for coaching support and help with planning and prioritization can make a HUGE difference to our success (or our failures).

We have an area of the brain that particularly is important for EF skills and this is our prefrontal cortex.

This controls:

* planning

* setting priorities

* organizing thoughts

* suppressing impulses

* weighing the consequences of one's actions

Interestingly our brains change greatly in our teen years. The main change is that unused connections in the thinking and processing part of your child's brain (called the grey matter) are 'pruned' away. At the same time, other connections are strengthened. This is the brain's way of becoming more efficient, based on the 'use it or lose it' principle. If you have teenagers, you will probably recognize this and see them reverting to toddler behavior - and acting without thinking!

What's the relevance of EF to neurodiversity?

We see that people who are neurodivergent often have challenges with EF that impact day-to-day. There is extensive research such as:

* ADHD (Barkley, 2001) - there are extensive studies showing the big impact on EF in people with ADHD. Nearly everyone with ADHD will have some challenges with executive functioning to some extent. Medication for ADHD can help with this to some extent.

* ASD/C- Pennington and Ozonoff (1996) found children performed 1 SD below the control group on EF tasks.

* Developmental Coordination Disorder (also known as Dyspraxia) - children challenges on tests of working memory (Alloway and Temple, 2007)

* Dyslexia - studies have found working memory challenges that impact their phonological (spelling) problems (Wolf 2010)

* Dyscalculia - Askenazi and Henik (2010) found evidence of specific EF challenges in university students with 'pure' dyscalculia

What are EF challenges?

People may have some of the following. Each person will be different in the pattern of their strengths and challenges. You can have cognitive overload when you have competing demands to do and remember all at the same time.

Areas of executive functioning can be related to:
Initiation:
* Getting going.. (especially when doing the boring stuff)

* Procrastination .... (hard getting off the starting blocks )

* Poor time estimation- (not being able to tell how long a task will take to complete)
Working memory:
* You can think of this as the brain's RAM (using it as a metaphor). It allows you to hold information in your mind while making links.

* Challenges with short term memory- what has just been said or remembering a sequence

* Juggling and processing different information such as listening to someone talking to you while remembering you need to turn out the light before going out.
Emotional/Self-control:
* Not having internal prompts such as having an internal voice saying '...after I have finished this I need to do that...'

* Problems lead to a sense of frustration forgetting important things especially when others see you as lazy/can't be bothered and it is not true.

* Difficulties regulating alertness such as being hard to complete tasks when the interesting parts have been done.

Difficulties with your sleep pattern and finding it hard to shut off- I call this 'my busy brain'.

* Feel a lot/reflecting and feelings of rejection
Remembering to remember:
* Thinking you need to do something but not remembering to do it - this is very frustrating.

* Difficulty taking others' perspectives into account.

* Impulsive, not considering the context

Difficulty adjusting and graduating your pace... being in one gear....all or nothing..
Focusing:
* Challenges sustaining focus

* Difficulties shifting to another task

* Slower gaining information and losing focus

* Difficulty moving to another topic or task in class
Hindsight and foresight:
* Harder learning from past experiences and then repeating the same actions again and again

* Difficulties with predicting future challenges
Time awareness:
This has been called "time blindness" by Psychiatrist Russell Barkley

* Remembering to put appointments into your diary

* Allocating appropriate time to a task

* Splitting a task into parts and recognizing how long each will take

What are the implications for the workplace?

People with neurodivergent traits may have spiky profiles with some key strengths in some areas but may have challenges with some specific executive functioning skills. This may impact on:

* Jobs and tasks that involve planning or decision-making.

* Tasks that involve error correction or troubleshooting.

* Situations where responses are not well-learned or contain novel sequences of actions.

* Dangerous or technically difficult tasks with multiple parts to them.

What can you do if you have EF challenges?

The good news we can do a lot to make a real difference when we understand what specific aspects are challenging.

· Check your barometer - how are you coping - is everything too much? Do you need to take time out/space/rest? When you are overloaded it can make it harder for you to manage new information or juggle multiple tasks.

· Anticipate when challenges may occur so you can build in additional time and ensure you have time to care for yourself.

· Have a place to go/time out create spaces mentally or physically where you can go to take time out if you feel overloaded. Using counting, listening to a familiar song or sound, going for a 5-minute walk, making a cup of tea for yourself.

· Reflect on experiences that have happened to see what can be pre-empted next time in a similar situation.

Minimize clutter and separate similar items into groups. Use color coding/visual prompts to help.

Try to visualize what you want to do (such as using daily checklists) and where you want to be. Break the steps into small parts and recognize as you move forward however small it is.

Create a list of actions at the beginning and end of each day and mark priorities. Carryover lists to the following day.

· If studying or focusing on work tasks, try the Pomodoro method of working - 25 minutes+ 5 minute breaks.

· Try to automate 'boring' tasks and choose some pleasure stuff after more tedious tasks.

Choose some music that helps you to focus.

Use timers and set alarms to remind you when deadlines are set. Put all tasks into an electronic diary as soon as you know the task/appointment. Set reminders before the deadlines rather than at the deadline itself.

Try and gain an understanding of how different aspects of work link together such as a project/assignment. If you work as part of a team understand how your work links with others.

I think executive functioning support is like someone having a good recipe book. The book tells you the tools you need, the order of the tasks, how long they will take, and what the end goal will look like when it is finished.

Finally, some people with ADHD who have EF challenges find that specific medication can help them with focusing and attending and help with short-term working memory. Professional guidance needs to be given choosing the right one for you if this is appropriate.

Professor Amanda Kirby is CEO of Do-IT Solutions an honorary professor at Cardiff University and an emeritus professor at the University of South Wales. She has written 9 books in the field of neurodiversity including the latest with @theosmith Neurodiversity at Work: Drive Innovation, Performance and Productivity with a Neurodiverse Workforce
Further reading:

Executive Functions: What They Are, How They Work, and Why They Evolved (Barkley)

Guare R, Dawson P, Guare C. Smart but scattered teens. Guilford Press; New York: 2013.

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Neurodiversity and executive functioning What did you do this morning? * Thought about what to make for your evening meal? * Packed your bag for work? * Wrote a shopping list for your weekend shop? * Got out clothes ready for the gym this evening?

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Is there a link between neurodiversity and mental health?

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Is there a link between neurodiversity and mental health?

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Neurodiversity, a term thought to have been coined by Australian sociologist Judy Singer in the late 1990s, represents the different ways in which people do anything from thinking, moving, and behaving to visualizing, communicating, and processing information. It is not a single condition. It includes everyone and encompasses a large number of people who may diverge from the mean. Neurodivergent traits are typically associated with both challenges and strengths.

Individuals with neurodiverse traits may meet a diagnostic threshold for neurodevelopmental conditions such as attention deficit hyperactivity disorder (ADHD), dyslexia, autism spectrum disorder, dyscalculia, developmental coordination disorder (also called dyspraxia), developmental language disorder and tic disorders. These conditions often co-occur. Autism spectrum disorder and ADHD, long treated as separate "disorders", are now increasingly diagnosed together alongside a better understanding of the common underlying genetic variations.

Neurodiversity and mental health

Any trait can be an advantage for some people if they have the opportunity to deploy it in a useful way -for example, being extremely creative or gifted with numbers. For some, however, having neurodivergent traits may create challenges, especially when navigating settings where there are social expectations. The differences can lead to, or be associated with, difficulties, including mental llnesses.

There is extensive evidence of greater rates of depression and anxiety co-occurring with autism, dyspraxia, and ADHD. For example, nearly three in 10 children diagnosed with ADHD have an anxiety disorder (1). Piek also showed that children as young as 3-4 years of age with dyspraxia had higher rates of anxiety compared with children without a diagnosis (2). Autism has been associated with higher rates of anxiety, eating disorders, gender dysphoria, mood disorders, obsessive compulsive disorder, personality disorders, schizophrenia, and substance misuse disorders.

Some of the links are explainable by genetic factors. For example, a number of genes associated with ADHD, which has a heritability of 71-90%, are also linked to dopamine transporter dysfunction (3). Dopamine is a neurotransmitter that has been called the "pleasure chemical". When released in large amounts, dopamine creates feelings of pleasure and reward, which motivates a person to repeat the specific behavior that led to release of the neurotransmitter. In contrast, low levels of dopamine, seen in a number of mental illnesses, are linked to reduced motivation and decreased enthusiasm. Dopamine imbalance has also been implicated in other conditions, including autism spectrum disorder, Tourette's syndrome, and dyspraxia.

Over-categorization: sorting, splitting and clumping

Over the years, philosophers, psychologists, psychiatrists, neurologists, sociologists, and, in more recent times, neuroscientists, have tried to work out the many links between body, brain, and life experiences. Categorization is one way to help deal with the obvious complexity.

The first official attempt to consider mental illnesses in the United States was the recording of the frequency of "idiocy/insanity" in the 1840 census. By the 1880 census, seven categories of mental health were distinguished: mania, melancholia, monomania, paresis, dementia, dipsomania, and epilepsy. The seven categories of 1880 grew to 365 diagnostic categories in 2000, and have ended up as 157 in the latest iteration of the Diagnostic and Statistical Manual of Mental Disorders, or DSM-5, released in 2013. We humans like to sort, clump, split and sort again.

When narrow diagnostic categorization doesn't quite capture all the ways conditions express themselves, there is a tendency to cluster and create acronyms. Take, for example, ESSENCE, which stands for Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations! The clumping may help experts think about ways to deal with complexity, but it doesn't necessarily improve patient care or patient outcomes.

In a 2014 research paper (4), Gillberg and colleagues made an important observation:

"Categorical diagnosis is an integral part of everyday clinical and research practice. We are so insistent on the distinction between disorder and not disorder (normalcy) that clinics and clinicians become more and more specialized and cater to the needs of children with 'autism spectrum disorder/ASD only', ' attention-deficit/hyperactivity disorder/ADHD only', 'language disorder only', 'reactive attachment disorder/RAD only.'"

The cautionary message is that humans have only one brain, and many things will be intertwined in their one brain.

Embracing complexity: from specialization to personalization

A dichotomous approach to neurodiversity and mental illness means people often bounce between services. Silos in professional training, service delivery models and different funding mechanisms, together with socioeconomic biases, all influence diagnostic pathways.

In the late 1970s, psychologist Urie Bronfenbrenner conceptualized that human development is shaped by complex relationships between individuals and their environments. He believed that contemporary understanding of human development had failed to consider interactive and multi-layered systems within a child's environment. The "Life Course Theory" emphasizes the timing and temporal context of lived experiences and how they can impact an individual's development and well-being. Through epigenetics, the study of how behaviors and environment can cause changes that affect genetic expression, we are learning more about the effects of external experience on brain activity, including how neurotransmitters work.

What this means is that we need to embrace complexity instead of trying to remove it. We need to take a biopsychosocial approach to intervention and to shift beyond the overly simplistic "one-gene-one-disease" paradigm and notions of "chemical imbalance" to seeing how each brain can change over time and understanding the reality of neuroplasticity.

This means not working in diagnostic or professional silos-and moving away from increasing specialization. Personalized interventions and formulations offer a key way to improve outcomes and should be encouraged over crude labeling. Above all, it's time to stop thinking of neurodiversity and mental health as separate constructs and focus more on individuals and their individual brains.

Amanda Kirby, MBBS ,MRCGP, Ph.D., is CEO of Do-IT Solutions, emeritus professor of developmental disorders at the University of South Wales, and an honorary professor at Cardiff University in the U.K. She comes from a neurodivergent family and has written a number of books on neurodiversity, including the recently published Neurodiversity at Work: Drive Innovation, Performance and Productivity with a Neurodiverse Workforce.

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Is There a Link Between Neurodiversity and Mental Health?

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Neurodiversity, a term thought to have been coined by Australian sociologist Judy Singer in the late 1990s, represents the different ways in which people do anything from thinking, moving, and behaving to visualizing, communicating, and processing information. It is not a single condition.

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The terms Attention Deficit Disorder (ADD) and Attention Deficit Hyperactivity Disorder (ADHD) can be misleading as they suggest a shortfall or a deficiency in attendance, whereas in reality "it is not that ADDers do not attend - they just attend to everything!" (Derrington, C., 2017).

There is also a tendency to associate ADD/ADHD with becoming easily distracted. Again it can be useful to flip this notion and recognise that if your brain 'attends to everything', this results in having to work much harder to avoid distraction. This 'distraction' can take the form of external stimuli, where environmental factors compete for attention, or the individual's own thought processes, which can be hard to screen out.

Environmental awareness

It's not always possible to alter environmental factors so being aware of, or attempting to reduce potential triggers that may compete for a student's attention may be useful (e.g. light background noise).

For some students physical movement or 'fiddling' can aid processing, rather than undermining focus or concentration.

Task (rather than time) management

A desire to 'attend to everything' can result in difficulties in making decisions because several possible answers, solutions or ways forward can always be justified. It's useful to help the student to focus on tangible, short-term steps rather than long-term plans. This may be particularly useful in postgraduate study where working processes and procedures can be drawn out, and goals can be implicit rather than explicit.

Agreeing on a concrete starting point with clearly identified mini-milestones can help with prioritisation and aid progress.

Frequent reminders about timescales can help students to match tasks to the time available.

Organisational props, such as visual reminders, prioritised lists and Gantt style charts can help students to break down processes and take control of the steps involved.

Managing information overload

If you emphasise context or reminders relating to the wider point of reference during lectures it can be really useful. This provides students with a framework to link and thread together different pieces of information.

Dividing lectures into discernible 'chunks' can allow the student to compartmentalise and organise the information they are processing.

You could emphasise critical pieces of information , so these do not get lost or overlooked.

Assignment development and feedback

When researching and planning for assignments, students with ADD/ADHD can have a tendency to not alter their focus until they are satisfied that they cannot improve or have found every last possible piece of the jigsaw. This can lead to generating too much content which is then hard to structure and sequence. Strict parameters for research or reading can be helpful to address this.

Clear and precise feedback through the use of colour coded formulas for paragraph building (e.g. PEA - Point, Evidence, Analysis) can really help with assignments as this can provide the student with a memorable visual aid to make sure there is greater control over the process of organising and sequencing their ideas and developing their academic writing style.

With thanks to the University of Worcester and Dr Chris Derrington at University College Northampton.

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The terms Attention Deficit Disorder (ADD) and Attention Deficit Hyperactivity Disorder (ADHD) can be misleading as they suggest a shortfall or a deficiency in attendance, whereas in reality "it is not that ADDers do not attend - they just attend to everything!" (Derrington, C., 2017).

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Subpage 6: SUPPORTING STUDENTS WITH ADHD

The information on this page is for University and College staff/academics looking for information about supporting students with ADHD. This guidance has mainly been written by students from Plymouth University with additions and amendments from members of the Cambridge University ADHD Support Group and input from students with ADHD across the UK.

Accessed originally from Plymouth University (on 19/07/16) and elaborated on by the CUADHD Support Group. Published July 2016 after University of Cambridge Disability Resource Centre consultation.

1) If we have a question we want to ask in a lecture, it is very difficult to concentrate on what is being said. The question dominates our thoughts. Some lecturers allow students to text questions to them during the lecture and respond periodically. Others use Twitter. This is a brilliant solution - texting the questions gets it out of our heads and we know we will get a response.

2) Sometimes we just can't attend lectures, not because we don't want to but because of the effects of the ADHD. If our mood is very down, or maybe very up, we simply can't attend. Please make it easy for us to access the lecture notes when we miss lectures. Videoing the lecture or creating a podcast would be even better.

3) Please make comprehensive lecture notes which will fill in the information we've missed- e.g. a step by step breakdown of your argument in the lecture, rather than just putting the material you're using to support your point. Otherwise, if we miss the lecture and then download the notes, then the notes are no help anyway. They need to be a viable alternative to attending the lecture, because attending the lecture isn't an option sometimes!

4) If we have our mobile phones out, we may be using them to take notes. Please bear this in mind before telling us to put them away, especially as we might not have a better note-taking option.

5) The hyperactivity part of ADHD often translates into feelings of internal restlessness for adults. Most of us who do have the hyperactivity part have grown out of climbing trees or charging around the playground! Sometimes these feelings become unmanageable and we need to move around.

6) Fiddling with things, doodling, clicking pen tops, shaking legs - these are all part of ADHD and help us maintain concentration. We all have different ways of concentrating, and sometimes it can appear that we aren't listening because we're fidgeting or looking elsewhere. We aren't being rude, it's just a different way of listening. Sometimes keeping your body mildly active helps to keep your brain on track, and sometimes it's unconscious. Please don't tell us off about it / embarrass us, we can't help it.

7) It takes a huge effort for us to be structured and organised. Last minute cancellations and swapping rooms can cause the structure we have created to collapse and set us right back with our studying. Please only do this if absolutely necessary and recognise the difficulties it causes. Having said that, we do understand - we're usually the ones having to do it.

8) Reading is a problem for most of us because it demands so much effort to focus. We may have problems with breaking down a reading list into its essential and nonessential components. The actual process of working out which reading to do, and in which order, can be completely overwhelming. We also can't distinguish between 'priority' and 'not a priority', and struggle with something called 'time-blindness' because to us time is either 'now' or 'not now'. Therefore, working out what to read and when is almost impossible! Guided reading lists and essential reading/tasks would help us with this - with prioritised reading marked as such.

9) When it isn't possible to read everything on the reading lists in full detail, you have to help us work out what is essential, what is useful and what is non-important! Please tell us which specific sections we need to read, with page numbers. Other students can distinguish between what they need to read, what they should read if they have time, and what they don't need to read. This process is overwhelming/impossible for students with ADHD! It is very common to get distracted and hyper-focus on an irrelevant area - this means we run out of time to read the important/relevant material and this has a knock-on effect on all the other tasks we need to complete for the week.

10) Unlike some of the other developmental disorders and mental health disorders, ADHD isn't just confined to certain areas of our lives. In fact one of the criteria for diagnosis is that the effects are across multiple settings. It can take a monumental effort to stop our lives descending into chaos, and sometimes we can't sustain that effort.

11) Most people with a diagnosis of ADHD take medication as this is the cheapest/most widely provided form of treatment on the NHS, and this can be very effective. Sometimes it lasts for four hours, sometimes eight, and sometimes we can forget to take it. There might be certain times of the day when we are not medicated, such as early in the mornings. If we tell you that we tend to focus best at a certain time of day, please try and keep meetings etc. within those hours, so we can concentrate on what you're saying!

12) We have a tendency to forget things. Please make instructions clear, and also make it clear that they are important. The best way to make instructions clear is to provide them in a written format, broken down into small steps and numbered in the order that they should be completed.

13) As structure is so hard for us, help in structuring our work would be invaluable. A framework to guide our written assignments and clear criteria would be very much appreciated. Also useful and in this category - planning essays together/in supervision skeleton essays to help us learn the structures we need to copy to do well.

14) Examples of work at different grades are very useful, e.g. a 1st class essay, a 2:1 essay. It would be helpful to be able to look at an example piece of work together with a supervisor and have the marking explained. This helps us to understand what we are expected to be doing when we are told to write an essay - in understanding what is expected of us, we can then understand better how to deliver it. Students with ADHD are very willing to work hard, they just struggle with figuring out what they are actually supposed to be doing. Without clearly defined structures and expectations we can find it impossible to even start. Having examples, models, and a lot of feedback, helps us to narrow down the potential variations and deliver.

15) It is a strength of ADHD that we can see myriad answers/approaches to complex problems, but that infinite variety of choice is hard to navigate when ADHD also limits our decision making abilities. Please give us a lot of guidance so that we know what we are supposed to be doing, and how to do it well.

16) We miss information; we forget information; we misinterpret information. We know everyone does at times but we habitually do it. We also have big problems with time management. It would be very helpful if you would schedule some time in for us to meet you individually and regularly. Additionally, if we could meet to plan what we're going to focus on and when for the upcoming year/term/month/week/day, this will always be hugely helpful.

17) We are very impulsive and often don't stop to think before we speak or act. We also get easily bored and frustrated. If we offend, it is not usually intentional. Afterwards we can feel appalled by what we have said or done. Please be slow to take offence and quick to forget.

For more information about supporting students with ADHD, how ADHD may impact on students, and how to be mindful of ADHD in relation to specific subjects, please see University of Worcester's Strategies for Creating Inclusive Programmes of Study (SCIPS) ADHD

Links to the other pages in this section:
Subpage 1: LEARNING AND NOTE TAKING: Subpage 2: STAYING FOCUSSED WHILST STUDYING Subpage 3: WRITING ESSAYS/PAPERS
Subpage 4: AVOID HAVING TO REVISE OR RE-LEARN LATER ON:

Subpage 5: GET MORE SUPPORT:

Links to the rest of our website:
University & College Home What is ADHD? Help & Support Library Living with ADHD Forum FAQ's Calendar of Events About Us Site Map
Review date: 04/05/2017

Next review date: 05/05/2018

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Subpage 6: SUPPORTING STUDENTS WITH ADHD The information on this page is for University and College staff/academics looking for information about supporting students with ADHD. This guidance has mainly been written by students from Plymouth University with additions and amendments from members of the Cambridge University ADHD Support Group and input from students with...

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BBC - The Social, Scotland, Getting An ADHD Diagnosis As An Adult

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Taryam talks about his experience of ADHD, getting a diagnosis as an adult and how he manages his symptoms. Yeah, ADHD can be really difficult, but it's also a wonderful thing that is part of Taryam's personality and he's proud of it.

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A guide to best practice in supporting highereducation students on the autism spectrum

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A guide to best practice in supporting highereducation students on the autism spectrum

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Strategies to support studentswith autism in further education

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Strategies to support studentswith autism in further education

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Dyslexie Font - Better reading for everybody

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A unique typeface that prevents 3D movements and innovative tools to read, learn and work with more ease - anytime and anywhere. Want to try Dyslexie Font

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OpenDyslexic is a typeface designed against some common symptoms of dyslexia.
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Our leaflets are grouped under different headings but some of them may apply to more than one group, so it is worth taking a little time to look under all the headings. If you have any questions after looking at our publications, please contact our Helpline.
General

Children, parents, teachers

Children, dyslexia and the law ( PDF )

Identification of dyslexia in schools - information for parents ( PDF )

Information for teachers ( PDF )

Ideas for supporting reading ( PDF / Audio 1 / Audio 2 )

Employment and the workplace

Job applications for employees ( PDF )

Job interviews for employees ( PDF )

Applications and Interviews - Information for Employers ( PDF )

A guide for employees ( PDF )

A guide for employers ( PDF )

Dyslexia and the Construction Industry ( PDF )

Study Skills

​Dyslexia and Us book

What do comedienne Elaine C. Smith, Olympic rower Sir Steve Redgrave, International rugby player Kenny Logan, 'Just a Minute' radio show host Nicholas Parsons, an 11 year old boy, a 78 year old retired construction worker, a job seeker, a parent, a prisoner and a vet have in common?

They are among the many people who have shared their personal stories about what dyslexia means to them. With a foreword by Formula 1 champion Sir Jackie Stewart OBE, this is a collection of over 100 moving, poignant, sad, shocking, funny, instructive and illuminating stories. They describe the powerful impact of dyslexia on individuals, families, relationships, professionals and support staff. They give a fascinating insight into how dyslexic people are treated in a wide range of different day to day settings, including job centres, adult literacy classes, education and workplaces.

Proceeds from the book, published by Edinburgh City Libraries, will go to Dyslexia Scotland to help people with dyslexia. The book is available to buy as a hard copy or as an e-book. Please click here for details of how to order.

Click here to see a list of self-help books and resources compiled by one of our members. (The author has highlighted those that they found most useful in yellow). They have also written a list of self-help podcasts and videos and a list of books which are personal stories about dyslexia.

Please note that Dyslexia Scotland does not endorse any particular products or services.

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Our leaflets are grouped under different headings but some of them may apply to more than one group, so it is worth taking a little time to look under all the headings. If you have any questions after looking at our publications, please contact our Helpline.

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Page not found - British Dyslexia Association

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The British Dyslexia Association is the voice for the 10% of the population that are dyslexic

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As a dyslexic student you have a unique learning style. Understanding this can help you take control and study in a way that is most effective for you. Full of practical advice and visual examples, this friendly book will guide you through the dyslexic learning style. It gives you all the essential knowledge and ideas needed to manage your dyslexia positively.

Handy for students at any level, this easy-to-read guide:

* suggests core strategies for doing things differently to work with your dyslexia, instead of against it
* covers individual study skills, including organisation, reading, writing and taking exams
* provides information on the support that should be available to you as a student

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As a dyslexic student you have a unique learning style. Understanding this can help you take control and study in a way that is most effective for you. Full of practical advice and visual examples, this friendly book will guide you through the dyslexic learning style.

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Autistic Pride Day is a pride celebration for autistic people held on June 18 each year. Autistic pride recognises the importance of pride for autistic people and its role in bringing about positive changes in the broader society.

Although Autistic Pride Day is June 18, pride events are often held on the weekend of that year for logistical reasons, but can be held at any time during the year.

Autistic Pride Day was first celebrated in 2005 by Aspies For Freedom (AFF), who selected June 18 because it was the birthday of the youngest member of the group at that time. AFF modelled the celebration on the gay pride movement. According to Kabie Brook, the co-founder of Autism Rights Group Highland (ARGH), "the most important thing to note about the day is that it is an autistic community event: it originated from and is still led by autistic people ourselves", i.e. it is not a day for other charities or organisations to promote themselves or stifle autistic people. The rainbow infinity symbol is used as the symbol of this day, representing "diversity with infinite variations and infinite possibilities". New Scientist magazine released an article entitled "Autistic and proud" on the first Autistic Pride Day that discussed the idea.

Organisations around the world celebrate Autistic Pride Day, with events around the world, to connect with one another through autistic events and demonstrate to allistic people (those not on the autism spectrum) that autistic people are unique individuals who should not be seen as cases for treatment. Writing for the Houston Press, Jef Rouner recommended five songs for Autistic Pride Day that celebrate difference and were written by autistic people.

Autistic pride points out that autistic people have always been an important part of human culture. Being autistic is a form of neurodiversity. As with all forms of neurodiversity, most of the challenges autistic people face come from other people's attitudes about autism and a lack of supports and accommodations ( ableism), rather than being essential to the autistic condition. For instance, according to Larry Arnold and Gareth Nelson, many autism-related organizations promote feelings of pity for parents, rather than fostering understanding. Autistic activists have contributed to a shift in attitudes away from the notion that autism is a deviation from the norm that must be treated or cured. Autistic self-advocacy organizations, which are led and run by autistic people, are a key force in the movement for autistic acceptance and autistic pride.

Joseph Redford, an organiser for London Autistic Pride, stated in a speech that the concept of autistic pride is not about a single day or event:

For individuals, Autistic Pride doesn't necessarily need to take the form of public events. The organiser of Inverness Autistic Pride, Kabie Brook, told me that she celebrated Autistic Pride day by taking a walk in the park with her family. And enjoying herself. Openly stimming, or vocalising or expressing yourself in your own body language is an example of Autistic Pride in Action. Standing up and passionately defending your own truth, regardless of convention or tone, or social dynamics even if it goes completely against the grain, or others consider it minor or pedantic, is Autistic Pride in Action. Seeking knowledge according to your own logic is Autistic Pride in Action. Completely breaking social rules, if it doesn't cause harm, is Autistic Pride in Action. Demanding to be treated with the same respect and dignity as others is Autistic Pride in Action. Walking away from something if you can't handle it is Autistic Pride in Action.

As autistic pride has continued to develop, autistic advocates have become increasingly professionalised, with Autistic Pride Reading incorporating as a charity in 2018, and holding a pride event which attracted over 700 people.

During the COVID-19 pandemic, with physical events impossible, autistic advocates collaborated under the Autistic Pride Alliance to create an Autistic Pride Online Celebration which hosted speakers from four continents.

There have been a number of Autistic Pride Day events hosted over the years to promote the self-affirmation, identity, dignity and equality of autistic people around the world. Most events happen during the summer months between June and August. The Lead Organiser for London's Autistic Pride, which is traditionally held on the Saturday closest to June 18th, officially known as Autistic Pride Day. For the last two years, most events dropped off the calendar due to the Coronavirus pandemic, replaced by an online global iteration. Autistic Pride Day 2020 was an eleven hour marathon that was hosted on YouTube and the event was repeated in 2021. For 2022, many local autistic communities are hoping to get back to their previous planning of their events.

Year

Hosted by

2021

Autistic Pride Alliance Online

Autistic Pride Alliance[15]

2020

Autistic Pride Online Celebration

2019

Autistic Pride Picnic at London Charlton House (AIM)

Autistic Inclusive Meets (AIM)

Autistic Pride Eastbourne

Eastbourne Asperger's Support Group

Fifth Annual Autistic Pride Picnic at London Hyde Park[16]

Joseph Redford

Autistic Pride Reading

Autistic Pride Reading Charity

Autistic Pride Brighton[17]

Adrie van der Meer

"Playlist: All across the autism spectrum". New York: ted.com. June 18, 2013.

"Autistic Pride Day celebrated on June 18". The Scottish Strategy for Autism. Archived from the original on March 13, 2016.

Redford, Joseph, "London Autistic Pride 2019", text of speech given at London Autistic Pride in July 2019.

Saner E (2007-08-07). "It is not a disease, it is a way of life". The Guardian. London. Archived from the original on 20 August 2007.

^ Shapiro, Joseph (June 26, 2006). "Autism Movement Seeks Acceptance, Not Cures". NPR.

^ Baron-Cohen S (2000). "Is Asperger syndrome/high-functioning autism necessarily a disability?". Dev Psychopathol. 12 (3): 489-500. doi:10.1017/S0954579400003126. PMID 11014749.

Reading Chronicle, "^ MBE recipient will give talk at autism event", 1st June, 2018. Accessed 17th January, 2021.

Autistic Pride Reading, "^ 1st Annual Newsletter December 2018", 4th December 2018. Accessed 17th January, 2021.

^ NIDHI (June 10, 2021). "Autistic Pride Day Theme 2021 Date Pride Events, Flag". Result29.in.

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Autistic Pride Day is a pride celebration for autistic people held on June 18 each year. Autistic pride recognises the importance of pride for autistic people and its role in bringing about positive changes in the broader society.

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Keep up to date with the latest news about Tourette Syndrome, including advancements in research. You’ll also find information from Tourettes Action about upcoming events and campaigns.

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International Day of Persons With Disabilities

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International Day of Persons With Disabilities

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16th November to 16th December 2023
Disability, Children and Youth

The launch can also be streamed on Youtube here.

This Autumn 2023 UKDHM focusses on the Experience of Disablement amongst children and young people in the past, now and what is needed for the future. UKDHM comes from a Social Model/Human Rights approach, so that all children and young people with long term impairment will not experience the social exclusion of stigma, stereotypes, negative attitudes and socially created barriers in the environment and the way things are organised.

UKDHM 2023 provides an opportunity for all councils, service providers, education establishments, youth, play and sports organisations, health providers and employers to examine their approaches to disabled children and youth. Those in the media, publishing and image making can challenge the way they have portrayed disabled people in the past and create inclusive and non-stereotypical ways forward, in conjunction with disabled young people.

From a history of neglect, harsh punishment, segregation, bullying and ignorance we must learn to challenge our prejudices and discriminatory practices. The way disabled children and young people have been and are treated is an indicator of how inclusive and rights respecting we are as a community and society.

Impairment is a natural part of human existence, but societal responses have varied across cultures and time. Disabled people including children have often been falsely blamed and scapegoated for society's ills. If one grows up on the receiving end of negativity, then one often internalises that negativity.

Most important in bringing about positive change is how we think about impairment and disablement.

Disabled people themselves over the last 60 years in the Disabled People's Movement have separated impairment (our difference of physical, psycho-social or mental function) from the social response to it. Disabled people reject ideas of 'normal' and require acceptance of us as we are. We require the barriers that prevent us participating whether of attitude, organisation or environment, to be dismantled. We as disabled people become accepted and society becomes more inclusive and equal.

This sounds easy but making the change happen is blocked by many forces who pay lip-service to equality, while shoring up the current rotten system.

UKDHM gives us a chance to understand this and make real changes.

Find out more in the 2023 Broadsheet

Valuing Difference

A filmed talk and Powerpoint developed for a Hackney special school staff.

Launch of Exploration 2023 Disabled and Young in UK

A collaboration to get the creative views of young disabled people
UKDHM looking for each contributor to express the good, the bad and the changes they would like as young disabled people. The most insightful, interesting and powerful contributions in each category will be celebrated. There will be 4 age groups. Entries can be written essays, poems, posters, artwork, films, signing, acting, audio or any combination. They will be short listed then go to a judging panel. www.ukdhm.org/exploration2023

Download the application using the link below:

Event
Essential Insights from a leading thinker of the Inclusion Movement
" An Ordinary Baby: Tales of Childhood Resistance" by Micheline Mason, 2022 & " The Phenomenon of the Human Distress Pattern: Our Only Real Enemy'' by Micheline Mason, 2022. Both Available from Amazon and at the Launch.

As an introduction to UKDHM 2023 on the theme of 'Disability Childhood and Youth', we held a face-to-face launch of these books with Micheline and several other disabled speakers to recount their experiences and the need for change.

Read more here and see the recording of the event.

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16th November to 16th December 2023 Disability, Children and Youth The launch can also be streamed on Youtube here. This Autumn 2023 UKDHM focusses on the Experience of Disablement amongst children and young people in the past, now and what is needed for the future.

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Media Contact:
Sandra Tosta, PhD
sandy@irlen.com
562-496-2550
ABOUT IRLEN SYNDROME
Irlen Syndrome (also referred to at times as Meares-Irlen Syndrome, Scotopic Sensitivity Syndrome, and Visual Stress) is a problem with the brain's ability to process visual information. This problem tends to run in families and is not currently identified by other standardized educational or medical tests. This largely unknown and undiagnosed disorder affects approximately 15% of the general population, 50% of individuals with reading and learning difficulties, 30% of individuals with ADHD and autism, and a significant portion of individuals with brain injury, chronic headaches, and migraines.
Learn More About Who Is Affected SIGNS OF IRLEN SYNDROME INCLUDE: Learn More About Signs and Symptoms
AWARENESS WEEK ACTIVITIES
This year, Awareness Week may look a little different, as the world continues to quarantine, social distance, and restrict social gatherings to control the spread of COVID19. Join us for a week of virtual and online awareness:

"Turn Out the Lights": Show your support for individuals with Irlen Syndrome by turning out your fluorescent lights at school, at work, and at home for one minute on Tuesday, October 19th at 10am (local time) and then log on to the Irlen Website to let everyone know you participated by placing your mark on the BLACK OUT map! This is a simple and easy way to get school or classroom support during Awareness Week, so don't be afraid to ask your child's teacher to participate.

Light Up Social Media: Share Irlen posts on your Facebook Page (or create your own personal post), Tweet about Irlen using the hashtag #ilovemyirlenfilters, Post pictures of yourself wearing your Irlen Spectral Filters on Instagram, Snapchat, or your other favorite social media.

Post a First-Time Try-On Video on Istagram: If you're new to Irlen, we'd love to see your reaction when you put on your Irlen Spectral Filters for the first time, so grab your phone and film yourself. Tell us what you think, and end your video by saying, "I love my Irlen Spectral Filters!" Then post your video on Instagram with #ilovemyirlenfilters
Or, if you've worn Irlen Spectral Filters for a while already, tell us in 1-minute or less what your thoughts were when putting your lenses on for the very first time, what's the first thing you noticed?" End your video by saying, "I love my Irlen Spectral Filters!" Then post your video on Instagram with #ilovemyirlenfilters

Support Irlen Charities: There are non-profit organizations around the world that support and fund Irlen services, research, and awareness efforts. We ask you to consider giving back during this Awareness Week, and help make Irlen services available to those who can't afford them. Please click here for a complete list of nonprofit organizations around the world that support Irlen.

Local Activities: Irlen practitioners, clients, families, and supporters are hosting Irlen Awareness activities all over the world during awareness week. These range from picnics and pizza parties, to informational seminars and free mini-screenings. Some are intended to bring Irlen-ites together, others to educate the general public, and some help raise money to fund Irlen services for those in need. As activities are listed, we'll include them on this page, as well as share them in the Irlen Awareness Week Facebook Group. To inquire about activities in your area, contact your local Irlen Diagnostician.

Check with your local Irlen Diagnostician for ISAW events in your area!

GET INVOLVED
How you can get involved and make a difference in your hometown:

Give a presentation to your class or your school about Irlen Syndrome (sample presentations are available in the resource section of this page)

Organize your school or office to Turn Out the Lights in support of individuals with Irlen Syndrome

Make Irlen your theme on Facebook, Twitter, Instagram, Pinterest, etc. for the week

Donate to help increase access to Irlen services to those who need them most

RESOURCES
Download Resources to use in your own awareness week efforts:
( CLICK TO DOWNLOAD POSTER FILES FOR PRINT AND WEB USE)

Video: summary of Irlen Syndrome appropriate for a school-age audience

( CLICK FOR VIDEO LINK)

Video: summary of Irlen Syndrome appropriate for an adult audience

( CLICK FOR VIDEO LINK)

Awareness Week PowerPoint Presentation For Kids

( CLICK TO DOWNLOAD PRESENTATION)

Awareness Week PowerPoint Presentation For Adults/Professionals

( CLICK TO DOWNLOAD PRESENTATION)

Irlen Awareness Video for Educators and Health Professionals (55 minutes) Alana Inugai, an Irlen Screener, created this 55-minute in-depth video for educators and health professionals. It's all about Irlen Syndrome, an includes an overview of current research. The video also raises awareness of language-based Dyslexia because accurate identification of these issues leads to appropriate interventions and positive outcomes!
(CLICK TO WATCH OR SHARE VIDEO)

Turn Out the Lights Promotional Graphic

(DOWNLOAD: 8×11 FLYER or 2X3 POSTER)
If you'd like to help individuals who can't afford Irlen testing, you can make a donation to one of the following non-profit organizations around the world that regularly support and fund Irlen services, research, and awareness efforts. Donations should always specify that they are intended for Irlen services. Some organizations allow you to specify that your donation be used for individuals in your local area if you choose. Irlen Syndrome Foundation - United States The Irlen Syndrome Foundation's mission is to promote the care of individuals with the condition known as Irlen Syndrome through awareness, education, and research. Visit us at www.irlensyndrome.org. Gateway-Longview - Western & Central NY, USA
To Donate: http://www.gateway-longview.org/make-donation/
Be sure to specify that your donation be used for Irlen Services
Gateway-Longview is a child and family service organization in Buffalo, NY that has been providing care, counseling, and support to countless children and families in Western & Central New York since 1890. Gateway-Longview serves approximately 3,600 children & families each year through its 18 different programs, which focus on educational, residential, and community services. Gateway-Longview promotes the treatment and care of individuals with the condition known as Irlen Syndrome, and facilitates awareness of and education about Irlen Syndrome. Irlen Ambassadors Charitable Fund - Northern California, USA Irlen Ambassadors Charitable Trust Fund in Northern California works with the local North Valley community foundation to provide assistance for lab fees for local area clients. In the last 3 years, the fund has given more than 70 scholarships.
To Donate: https://www.nvcf.org/fund/irlen-ambassadors/
Semper Fi Fund - United States The Semper Fi Fund provides immediate financial assistance and lifetime support for wounded, critically-ill and injured members of the U.S. Armed Forces and their families. Semper Fi Fund has been providing Irlen services for servicemen and women who suffer chronic headaches and migraines as a result of traumatic brain injuries.
To Donate: https://semperfifund.org/donate/
Be sure to specify that your donation be used for Irlen Testing by selecting "Yes" to the question "Is this donation in support of a fundraising event, campaign, or type of assistance?" and select "Assistance - Irlen Spectral Filters"
ABC For Reading - United Kingdom
ABC For Reading is a non-profit charity in the United Kingdom. This charity's mission is "To alleviate the suffering and promote the relief and care of persons suffering from the condition known as Irlen Syndrome; to advance the education of such persons and public in general concerning this condition; and to promote further research into Irlen Syndrome.
To Donate: https://www.justgiving.com/ABCforReading/

For more information: Mervyn Holden is the chairman of ABC for Reading and can be contacted via email mervynholden@msn.com or phone 44 1449 720947

Reading By Colour - Kent, South - East England
The Reading By Color charity screens local children for Irlen syndrome often for free (donation is optional) and helps to fund filters where funding allows. As well as raising awareness.
Charity number 1052067
www.readingbycolour.org.uk
admin@readingbycolour.org.uk
To Donate: BACS (bank transfer) barclays bank, sort code 20-25-42 account number 10371513 account name Reading By Colour (Kent trust) 1052067 charity no.

Irlen C.I. Charitable trust - Channel Islands

The Irlen C.I. Charitable Trust aims to raise awareness of Irlen Syndrome within the Channel Islands. The charity provides funding or partial funding for both children and adults with Irlen Syndrome who wouldn't otherwise be able to afford the testing and the life changing lenses.

To Donate: BACS (bank transfer) to NatWest, sort code 60 1203 account number 27230902. Charity Number NP0948
Empowered Learning Trust - Reporoa Valley, New Zealand
The Empowered Learning Trust 's aim is to work towards removing barriers to learning, so that young people can go on to fully engage with their education and achieve to their full potential. The Empowered Learning Trust has been screening all students year 4 and older in their local community for Irlen Syndrome and other visual difficulties since 2012.

To Donate: http://www.givealittle.co.nz/org/EmpoweredLearning

For More Information: http://www.empoweredlearningtrust.co.nz/

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Irlen Syndrome (sometimes referred to as visual stress) affects 15% of the general population and up to 46% of the reading and learning disabled. It also affects individuals with dyslexia, ADHD, autism, TBI, and concussion. Join us in raising awareness and educating others about this often misdiagnosed condition.

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Announcing the Launch of Dyspraxia Week 2021 - focusing on the urgent need to improve support for children with dyspraxia in UK primary and secondary schools.
It is a little-known fact that Dyspraxia affects 6% of the population. Following the most challenging of times for all children in primary and secondary schools, the Dyspraxia Foundation is using this year's Dyspraxia Week - 10th to 16 th October - to urge the teaching professionals to find out more about how to support children with dyspraxia who continue to fall 'under the radar' and miss out on vital support in schools.

Sophie Kayani, parent and Chair of the Dyspraxia Foundation said; "We have worked hard continue our services supporting parents of children with dyspraxia, young people and adults with the condition. Our online helpline and website have been inundated during the past 18 months and we have been fortunate to keep our team working remotely to ensure our regular services continue. We know that home-learning was extremely hard for many families, but even more so for those affected by dyspraxia. Parents and young people themselves have told us the pandemic made them even more anxious than usual and the closure of schools and lack of education has really taken its toll. Dyspraxia continues to be the 'poor relation' in terms of teacher training and awareness. We really hope educational specialists will take up many activities and learning opportunities we have planned during Dyspraxia Week this year, to revisit this urgent educational priority."

"Parents who contact our helpline service often express concern about how difficult it has been get their child's needs recognised. In some cases, their children have been dismissed as lazy or naughty, when in fact they have been working hard to try to keep up with their peers - often whilst coping with extreme anxiety. Too often these misunderstandings are the result of lack of teacher training, poor resources and lack of capacity to adapt teaching methods to ensure these children can be successful."

Eleanor Howes, Chief Executive of the Dyspraxia Foundation said "We do see areas of good practice around the country and we are working closely with health and education specialists to help achieve progress. But Covid-19 has not been kind to young people affected by dyspraxia. Parents are being passed from one professional to another in the pursuit of a diagnosis and support. This is delaying children from receiving the professional help they need and deserve, and we are urgently seeking action or we are going to have generations of young people irrevocably set-back in their lives."
This year's Dyspraxia Week will see the charity host a wide range of on-line activities, events, training opportunities and shared learning - all aimed at improving the educational experience for young people with dyspraxia at primary and secondary school. Educational professionals are welcome to view the schedule at Dyspraxia Week 2021 | Dyspraxia Foundation Parents and young people are also invited to take part, share their experiences, and help raise awareness of this vital issue.
Please visit https://dyspraxiafoundation.org.uk/ for further information on dyspraxia and the Dyspraxia Foundation or contact info@dyspraxiafoundation.org.uk if you would like more information how to get involved in fundraising or awareness activities during Dyspraxia Week 2021.
ENDS
Notes to Editors:

Media enquiries or to set up an interview/be put in touch with a local representative, please email media@dyspraxiafoundation.org.uk

Dyspraxia is a lifelong condition which affects the gross and fine motor coordination in both children and adults. It effects 6% of the population. Dyspraxia sometimes runs in families - and there are believed to be one to two children affected in every class of 30 children

Symptoms of dyspraxia can include frequently falling over, difficulty walking up and down the stairs, no spatial awareness and poor handwriting skills. Many of those who are diagnosed with dyspraxia also experience difficulties with organisational skills, memory, processing speed and in some cases speech.

Dyspraxia Foundation provides resources, support and information to parents, carers, health and education professionals across the UK. We also work directly with those diagnosed with dyspraxia who wish to learn more about their condition and how to cope with living with the condition.

The Dyspraxia Foundation helpline continues to be available via the website Contact Our Helpline Service | Dyspraxia Foundation

The Dyspraxia Foundation runs support groups in 27 locations across the UK - all of which are run by dedicated volunteers many of whom have dyspraxia themselves or who have a child with the condition.

Download the press release here.

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Announcing the Launch of Dyspraxia Week 2021 - focusing on the urgent need to improve support for children with dyspraxia in UK primary and secondary schools. It is a little-known fact that Dyspraxia affects 6% of the population.

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Disabled Empowerment in Higher Education Month

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Disabled Empowerment in Higher Education Month

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To leverage social media to promote discussions, inclusion, and belonging of disability in higher education spaces

To create a safe space to share stories of ableist experiences through anonymous stories, retweets, twitter takeovers, etc.

To address underlying problems disabled individuals in higher education face.

To provide resources and events that bring awareness to the experiences of disabled individuals in higher education.

To raise awareness among allies about how to create accessible academic/workplace spaces.

Followers and Counting

A black twitter logo that says 8775 followers and counting underneath. The number is in the form of a counter and rapidly counts up from 0 until it reaches 8775.

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To leverage social media to promote discussions, inclusion, and belonging of disability in higher education spaces To create a safe space to share stories of ableist experiences through anonymous stories, retweets, twitter takeovers, etc. To address underlying problems disabled individuals in higher education face.

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Para ayudar a los visitantes a comprender la información de este sitio web en una variedad de idiomas, HSH ofrece Google Translate, que automatiza la traducción del sitio web. La herramienta no es perfecta. La traducción automática puede perder contexto, el significado completo puede perderse o las palabras pueden traducirse incorrectamente. Como resultado, HSH no puede garantizar la exactitud del texto convertido. Cualquier persona que confíe en la información obtenida de Google Translate lo hace bajo su propio riesgo. HSH se exime y no aceptará ninguna responsabilidad por daños y perjuicios de cualquier tipo causados por el uso de la función Google Translate. Cuando hay alguna duda , la versión en inglés es siempre la versión autorizada del sitio web. Es posible que algunos elementos del sitio no se traduzcan, como imágenes que contienen texto, documentos, mapas y elementos de páginas web. Además, es posible que algunas características del sitio no funcionen en las versiones traducidas. Si tiene alguna pregunta sobre la información que aparece en nuestro sitio, contáctenos.

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Reframing ADHD: Discovering New Perspectives. Experts answer questions in videos

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We are registered as a charity in England and Wales (269425) and in Scotland (SC039427). The National Autistic Society is also a company limited by guarantee, registered at Companies House (01205298). VAT registration number: 653370050. © The National Autistic Society 2023

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According to the Department of Education, 15% of students in the United Kingdom have a learning difference. I am one of these students. Many students with special educational needs (SEN) have negative school experiences. I know what it feels like to be frustrated, embarrassed and humiliated at school. I also know what it feels like to have some teachers and classmates assume you are not smart. At school, we are constantly reminded of what we can't do. This can be very discouraging and demoralising.

Many neurodivergent adults look back on their school experience in a negative light. Many of these adults spent much of their time at school feeling bad about themselves. They were often made to feel like failures. No one should ever be made to feel this way. By acknowledging and celebrating the strengths of SEN students, we can begin the seismic shift of changing the way students with special needs are perceived and treated at school and also the change the way neurodivergent students feel about themselves. My hope is that all students have happy, positive and fulfilling school experiences.

I n order to empower SEN students to flourish, schools need to stop focusing only on what we cannot do and should begin to recognise, nurture and celebrate the many strengths and talents of being neurodiverse . It is important for schools to recognise our creativity, innovation, ability to think outside-the-box, problem-solving skills, unique insights and perspectives, as well as our perseverance and resilience.

The future business leaders.

We are the trailblazers.

We are the Einsteins and Bransons of tomorrow.

Yet, our ability to fulfil our potential is being threatened by the stigma associated with having a special educational need and the misconceptions many people still have about autistic people and people with learning differences. We are also more vulnerable to being mistreated. In a 2017 bullying report by Ditch the Label, 75% of autistic students and 70% of students with learning differences reported being bullied at school.

It is time to create a more inclusive educational landscape so that SEN students have equal access to education. But in order to bring about this change, we need your help. Please support SEN students by registering to take part in Neurodiversity Celebration Week this March 15 - 21, 2021 . Please join the other 830 schools and over 565,000 students from around the world that are taking part.

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Neurodiversity Celebration Week - Pledge

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According to the Department of Education, 15% of students in the United Kingdom have a learning difference. I am one of these students. Many students with special educational needs (SEN) have negative school experiences. I know what it feels like to be frustrated, embarrassed and humiliated at school.

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The Disability Resource Centre, in collaboration with colleges and departments/faculties, is committed to promoting best practice throughout the University, and to continually develop the provision of support for disabled students. This provision enables the University to meet its legal obligations to disabled students under the Equality Act (2010).

At this level, teaching strategies which are effective for disabled students are also effective for non-disabled students. The term 'special needs' is unhelpful as the requirements of disabled students are not 'special'; they are generally identical to those of non-disabled students. For example, they need access to the teaching room, and access to the information that is being presented or discussed - so premises and teaching materials and styles should be well designed or adapted to provide that access.

Key Support Areas:

Ensure you are aware of any additional requirements of your students and have an understanding of support needed.

Use and allow the use of appropriate technology, usually the PA system, induction loops, and digital recording devices.

Have handouts available, and in an accessible format, well labelled and in advance, if required.

Manage discussions and question and answer sessions to enable all to participate, and make explicit what is required.

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The Disability Resource Centre, in collaboration with colleges and departments/faculties, is committed to promoting best practice throughout the University, and to continually develop the provision of support for disabled students. This provision enables the University to meet its legal obligations to disabled students under the Equality Act (2010).

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Inclusive curriculum design in higher education

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Inclusive curriculum design in higher education

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The Higher Education Academy commissioned this guide to support the higher education sector to think creatively about inclusive curriculum design from a generic as well as subject or disciplinary perspective.

The guide is divided into four sections as below. For ease of access the different sections and subject specific guides are all published as separate documents. Section one includes a contents page providing links to the other 26 documents that make up the full publication.

Section one: Introduction and overview

Section two: Generic considerations of inclusive curriculum design

Section three: Subject specific considerations

Section four: References and resources

All sections can be accessed below.

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Inclusive curriculum design in higher education

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NADP Inclusive Practice/ Universal Design Repository

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NADP Inclusive Practice/ Universal Design Repository

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Inclusive Practice/ Universal Design Repository

The Inclusive Practice Repository is a resource for NADP members and associates which holds a selection of resources supplied by members. The resource consists of individual, departmental, institutional and national documents which relate to inclusive practice.

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Inclusive Practice/ Universal Design Repository - NADP

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The Inclusive Practice Repository is a resource for NADP members and associates which holds a selection of resources supplied by members. The resource consists of individual, departmental, institutional and national documents which relate to inclusive practice.

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Inclusive Teachingand Learning inHigher Education asa route to Excellence

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Inclusive Teachingand Learning inHigher Education asa route to Excellence

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It is part of a teaching professional's skills to understand the needs of a diverse population of students. This free course, Accessibility of eLearning, introduces the challenges for disabled...

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Skip to main content

It looks like you're using Internet Explorer 11 or older. This website works best with modern browsers such as the latest versions of Chrome, Firefox, Safari, and Edge. If you continue with this browser, you may see unexpected results.

This page details the Diverse Learners project at the University of Hull. Co-led by Lee Fallin and Sue Watling, the project aims to produce simple guidelines to support best practice learning material design.

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Skip to main content It looks like you're using Internet Explorer 11 or older. This website works best with modern browsers such as the latest versions of Chrome, Firefox, Safari, and Edge. If you continue with this browser, you may see unexpected results. This page details the Diverse Learners project at the University of Hull.

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A guide to best practice in supporting higher education students on the autism spectrum

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A guide to best practice in supporting higher education students on the autism spectrum

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dileaders - d&i Leaders Neurodiversity at Work 2021 Summary Report - Page 2

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FIVE WAYS TO MAKE YOUR ORGANISATION NEURODIVERSITY SMART Many organisations overlook neurodiversity when they discuss disability, despite the fact that

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Skip to content We've compiled a huge list of reviews and guides, all for free, for you! You can also search below, or filter by area. Enjoy! A wonderful collection of videos from the D&A Team that explore some of the same fantastic range of AT that you find on the Resources page.

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New research and free guide: how to adapt mental health talking therapies for autistic children and adults

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New research and free guide: how to adapt mental health talking therapies for autistic children and adults

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Research

The guide was informed by the views of mental health professionals, over 1,500 autistic people and almost 2,000 family members. In our Mental Health Survey, carried out in October and November 2020, we found:

94% of autistic adults experienced anxiety; almost six in ten said this affected their ability to get on with life

almost two in three have a clinical diagnosis of anxiety

83% experienced depression

eight times as many autistic people report feeling often or always lonely compared to the general population.

Autism is not a mental health condition. But high numbers of autistic people suffer unnecessarily from poor mental health and our autistic supporters have told us it's their top priority. In our 2019 survey, 76% of autistic adults report reaching out for mental health support in the preceding five years.

Higher rates of anxiety and depression in autistic people have been associated with lower life satisfaction, greater social difficulties, loneliness and insomnia. This can have devastating consequences and even lead to crisis, with some autistic people ending up in mental health hospitals. The coronavirus pandemic has only exacerbated the mental health crisis for autistic people.

Our research suggests that this situation is driven by insufficient social care and mental health support in the community, as well as a lack of understanding of autism and how to adapt and adjust support to meet autistic people's needs. Few studies have directly sought the views of autistic people to discuss what works for them. And there is very little published evidence on how best to adapt practice for autistic adults and children, nor guidance for therapists.

Our guide

Alongside Mind, we want to change this. Learning from autistic people and family members, we identified the biggest barriers to accessing talking therapy, as well as what support works best. We then worked with mental health professionals to understand what is practical and achievable. We also discovered a lot of examples of good practice that therapists are already using to deliver positive outcomes.

Top recommendations for professionals

Improve autism understanding for all staff through training.

Make the physical environment in both waiting and therapy rooms less overwhelming.

Provide clear, concise and specific information about what to expect from your service and sessions before therapy starts.

Be flexible and adapt your communication to the needs of the person you're supporting.

Together discuss adaptations and adjustments you can provide so the person you're supporting is aware of what they can ask for.

These are just a few overarching recommendations, for more details, read our free guide.

Reaction

Caroline Stevens, Chief Executive of the National Autistic Society, said: "Our autistic supporters tell us that their top priority is improving mental health support.

"In 2019, 76% of autistic adults told us they'd reached out for mental health support in the preceding five years - but only 14% said there were enough services in their area to meet their needs. This is unacceptable. It's devastating for autistic people and their families, and one of the reasons for the national scandal of autistic people being stuck in mental health hospitals.

"Alongside our campaigning, we and Mind want to help professionals delivering talking therapies to adapt their support, so it works better for autistic people. Thanks to funding from the Pears Foundation, we've produced this guide. We encourage everyone working in mental health to read it and start thinking about how you can adapt your practice for autistic people.

"Training and small changes, like allowing autistic people who need it extra time to process and answer questions, can be transformative. Find out more and download the free guide on our website: autism.org.uk."

Kerry McLeod, Head of Information Content at Mind, said: "We're proud to be part of this project and hope it makes a genuine difference to autistic children and adults.

"Many autistic people with mental health problems struggle to get appropriate support - and the pandemic has made things even harder. At Mind, we fight to make sure everyone with a mental health problem has access to the help they need so we were happy to contribute to this work.

"Campaigning for high quality, timely mental health treatment for everyone who needs it is central to our work. We hope this guide goes some way to helping autistic people affected by mental health problems to access the support they need and deserve."

Lauren-Rochelle Fernandez, autistic adult and founder of "mask off" campaign who contributed to the research, said: "I have struggled to get help my whole life. After I was diagnosed with autism and ADHD, I reached out to a number of different services but as a black autistic woman I found myself often misjudged, mistreated and misunderstood.

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New research and free guide: how to adapt mental health talking therapies for autistic children and adults

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The National Autistic Society and Mind are proud to launch a free good practice guide to help mental health professionals adapt talking therapies for autistic adults and children, alongside new research into autism and mental health.

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Working for a successful student journey for disabled students

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Working for a successful student journey for disabled students

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* Do you have any needs that make studying more difficult for you?

* Have you had some extra assistance in school?

* Not had help at school, but feel you may need it studying at a higher level away from home?

What can I do to help myself now?

Telephone, email, or visit the disability support office for your college or university.

You may never have heard about NADP, the National Association of Disability Practitioners - in fact, doing a Google Search for NADP brings up a host of interesting options such as a complex biochemical protein, the National Anti-Doping Panel, Novel and Dangerous Pathogens, and something to do with teeth! But we are actually a professional organisation, with members working with disabled students across post-16 education.

Our members work in offices with different names, but just search the college or university website for 'disability' or 'student support'. Don't worry about the name though, our members all have the same aims: to level the playing field as much as we can, remove as many barriers as we can, and make sure that, to the best of our ability, students are able to succeed in their studies and go on to have the best start possible to their career and life.

How do we support students?

* Many of us work in universities or colleges to assist and advise disabled students to access funding, for example, make the most of their courses, or to encourage inclusivity - with the aim of making buildings and courses open to as many people as possible.

* Some of us, such as dyslexia tutors, sign language interpreters and note-takers, work outside universities and colleges, and may provide support directly to students.

* Others work with students, to assess their support needs as they head to universities and colleges.

Altogether, we aim to ensure that students get the right support as, when, and where they need it. It is always wise for new students to find out about the support, even if you decide you do not need it immediately. You do not want to have to try to get support urgently if you do need it.

The (disabled) student journey

Many people imagine that the student journey through university is a straight and easy path: you apply, you start, you study, you have fun, you graduate, and you get a fabulous job!

This is rarely the case for any student, of course, as unexpected things happen along this journey. The majority of students find their journey is a bit more of a winding lane, filled with many ups and downs.

The university journey is meant to be a challenge, which makes it all the more rewarding. In addition to studying, students have to be great at time management, they have to be able to manage others, plan their work and play, develop resilience and strength, learn how to recognise their limits, and ask for help when necessary.

For disabled students, this journey may be even more challenging, and it is our job to make sure we provide support and advice to make sure the challenge is fair.

Whatever level of skills you may have already developed, appropriate support should be there for you - your job is to ask for that support.

How can your disability adviser help?

At school you may have had a SENCO who was able to assist with your studies. Now you will have an adviser, who can support you from the moment you apply, until after you graduate.

You may be looking at courses and worrying about how accessible they may be. A blind student may love history, but choose another subject because they are concerned about the number of books they will have to access. Our members can offer support, advice, and potential solutions that may allow you to study the subject you love. It is always worth asking.

Our members will also help you navigate the complex world of Disabled Students' Allowances - a grant available to contribute towards the costs of study-related support for those students who are eligible. And if you aren't eligible, then our members will do their utmost to provide the same levels of support in a different way.

You may need to produce a diagnosis or other evidence to support your request for some forms of assistance, such as financial help or examination changes, but universities operate on a Social Model of Disability. This means they believe that disability is caused by the way society is organised, rather than by a person's impairment or difference. Our members look at ways of removing barriers, so that all students can be independent and equal in society, with choice and control over their own lives.

What about a university away from home? Is the accommodation accessible by wheelchair? How far it is to travel? How will you get there? You may have to think about personal care support and dealing with Universal Credit. Our members are really experienced in this area, and can offer advice and support.

Our members can't solve all of life's problems, but they can help with making sure that you feel supported and your study related needs are met - giving you the time to make friends and to enjoy your new life!

Moving on

Each year brings new challenges - increased workload, study placements, field trips, and exams - but our members are there to advise and support you, when needed. If they can't determine a way forward, they consult the wider NADP community for ideas using our email support forum, or by chatting at workshops and conferences.

NADP members are there to help you navigate through the strange world of mitigating circumstances, examination accommodations, and study interruptions. They are there to support, challenge, and pick up the pieces on occasion.

Graduation! You got there! Disabled students often graduate at the same time as their friends but, sometimes, our members have supported their negotiation for some extra time. They just graduate a little later.

Good luck with your new journey from NADP and all our members!

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Working for a successful student journey for disabled students

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Do you have any needs that make studying more difficult for you? * Have you had some extra assistance in school? * Not had help at school, but feel you may need it studying at a higher level away from home? What can I do to help myself now?

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National Union of Students has long campaigned to remove the stigma from all disabilities, challenge perceptions, and encourage all members of our society to take a positive attitude towards understanding the nature of disability and overcoming prejudices.

However, NUS does not handle individual complaints against educational inductions and cannot represent individual students. If you need support or advocacy, we have some recommended steps and external organisations listed below that may be able to help you.

If you have a complaint or request for support, we would first suggest getting in touch with your local students' union at your place of study, so they are aware of the issue and can provide support. Then you will need to raise any complaints internally to your place of study. Most will have a complaints page or process that is easy to find online.

You should also be encouraged to consult any relevant support services, including Counselling and Wellbeing, the Disability Advisory Service, the University Study Advisers, and the Student Advisers at your place of study.

Secondly, please be aware that you are able to raise any complaints through an independent organization known as The Office of the Independent Adjudicator. The OIA is an independent body specifically set up to review student complaints.

Please see the OIA's guidelines which highlight the importance of procedural fairness and good practice in supporting disabled students which may be illuminating to look at to evidence what you have experienced, and whether it was appropriate.

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National Union of Students has long campaigned to remove the stigma from all disabilities, challenge perceptions, and encourage all members of our society to take a positive attitude towards understanding the nature of disability and overcoming prejudices. However, NUS does not handle individual complaints against educational inductions and cannot represent individual students.

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Help if you're a student with a learning difficulty, health problem or disability

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Help if you're a student with a learning difficulty, health problem or disability

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Skip to main content

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Disabled Students' Allowance ( DSA) is support to cover the study-related costs you have because of a mental health problem, long-term illness or any other disability.

This can be on its own or in addition to any student finance you get.

The type of support and how much you get depends on your individual needs - not your household income.

You do not need to pay back DSA.

What you'll get

2023 to 2024 academic year

Undergraduate and postgraduate students can get up to £26,291 a year for support.

2022 to 2023 academic year

Undergraduate and postgraduate students can get up to £25,575 a year for support.

What DSA can pay for

You can get help with the costs of:

specialist equipment, for example a computer if you need one because of your disability

non-medical helpers, for example a British Sign Language (BSL) interpreter or specialist note taker

extra travel to attend your course or placement because of your disability

other disability-related study support, for example having to print additional copies of documents for proof-reading

DSA does not cover disability-related costs you'd have if you were not attending a course, or costs that any student might have.

Buying a new computer

You may get a new computer if you're assessed as needing one because:

you do not already have one

your current one does not meet your study needs

When buying a new computer, you'll need to pay the first £200.

The DSA team will send you more information about this after your needs assessment.

Your 'needs assessment'

Once your eligibility for DSA is confirmed, Student Finance England may ask you to contact an assessment centre to work out what help you need.

This is known as a needs assessment. Do not book this until Student Finance England asks you to.

The assessment is paid for through any DSA entitlement you may have.

After the assessment, you'll get a report listing equipment and other support you can get for your course.

Do not buy any equipment until you've been assessed - you will not be reimbursed for it.

How DSA is paid

Money is paid either into your bank account or directly to the organisation providing the service or equipment.

You'll find out how your support will be paid to you after your needs assessment.

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Help if you're a student with a learning difficulty, health problem or disability

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Disabled Students' Allowance is extra money for higher education students - DSA1 forms, eligibility, how to apply, needs assessment.

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Disability discrimination in further and higher education (GB)

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Disability discrimination in further and higher education (GB)

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Here you'll find advice on disability discrimination in colleges, universities and other providers of further education (FE) and higher education (HE) in England, Wales and Scotland. If you live in Northern Ireland, where the law is different, you may want to contact NI Direct.

Because we're talking about legislation, we'll sometimes use 'disabled' as a general term that includes autism.

What does 'disability' mean?

The Equality Act 2010, (The Equality Act), section 6 says that someone has a disability if he or she has a physical or mental impairment that has a long-term and substantial adverse effect on his or her ability to carry out normal day-to-day activities.

'Mental impairments' include autism, but you don't have to have a diagnosis to be considered disabled.

The Equality Act protects students, prospective students and, in some circumstances, former students from discrimination in further and higher education.

What does the Equality Act cover?

An FE or HE provider must not discriminate against a disabled student in relation to:

admissions

how education is provided

exclusion

any other disadvantage or denial of opportunity or choice.

How education is provided includes:

teaching

assessments and exams

facilities, including lecture halls, libraries and IT

leisure, recreation, entertainment and sports facilities

the physical environment

disciplinary procedures.

FE and HE providers have a responsibility towards disabled pupils for internal exams. It's also unlawful for general qualification bodies (GQBs) and other qualification bodies, such as the General Medical Council, City and Guilds, and the Law Society to discriminate against students taking formal examinations. You can read more about this in our exam guidance.

However, discrimination can still sometimes take place, even if the provider believes they're acting in the student's best interests.

Education, health and care (EHC) plans in college (England only)

If you have an EHC plan, this should work alongside any extra support the college provides you.

What types of discrimination are there?

There are a few different types of disability discrimination. They are:

direct disability discrimination

indirect disability discrimination

discrimination arising from disability

a failure to make reasonable adjustments

harassment and victimisation

We'll now look at each of those, one by one, in a bit more detail.

Direct disability discrimination

Direct disability discrimination is when someone is treated less favourably than others because of their disability.

Example:

An autistic student is excluded from a course trip because the education provider doesn't think they'll get the same benefit as other students.

Direct discrimination is always unlawful. While FE or HE settings can have course requirements, these must be necessary. For example, the Equality Act permits single-sex institutions to admit students of only one sex without this being unlawful direct sex discrimination. It's also not unlawful direct discrimination to treat a disabled person more favourably (than a non-disabled person) because of their disability.

Example:

A university organises an open day for prospective students. It arranges for an autistic student to visit an hour before other prospective students arrive. This more favourable treatment of a disabled person is lawful under the Equality Act.

If a college or university treats a student less favourably because they mistakenly think the student has a disability, that's called direct disability discrimination by perception. Also, if a student is treated less favourably because they're friends with a disabled person, that's known as direct disability discrimination by association.

Indirect disability discrimination

Indirect disability discrimination is when a policy or practice is applied in the same way to everyone but puts a disabled student at a disadvantage. That is unless the college or university didn't know the student had a disability, or it can be justified as being a 'proportionate means of achieving a legitimate aim'. We'll explain what this means in a bit more detail in the next section.

Example:

A college or university offers a science course based at two different sites. This means that students need to attend lectures at one site, then immediately go to a practical session at the other site. This may disadvantage autistic students if they have difficulties relating to mobility/anxiety/sensory sensitivities. Unless it can be justified, this is likely to be unlawful indirect disability discrimination.

Discrimination arising from disability

If a student is treated unfavourably because of something connected to their disability, and this can't be justified, it's discrimination arising from disability. However, it won't be unlawful if the person who discriminated didn't know, and couldn't have reasonably been expected to know, that the student was disabled.

Example 1:

An autistic student is often outspoken in tutorials. The tutor considers him 'disruptive' and asks him to stop attending. Given the student has difficulties with social communication, this is likely to be discrimination arising from disability, unless the tutor's response can be justified.

Example 2:

An autistic student needs to take some time away from their studies due to mental health reasons linked to autism. The college does not record disability-related absences separately from general absences. It then takes disciplinary action when the student has exceeded the allowed number of absences in a term. As the absence was related to the student's disability, the college's actions would be discriminatory unless they can justify what they did as being 'a proportionate means of achieving a legitimate aim'. An example of a legitimate aim would be for the college to maintain academic standards. However, in the last example, was disciplinary action a proportionate way of achieving that aim? A more proportionate response may be for the college or university to:

provide appropriate support for the student

make tailored, reasonable adjustments to reduce the student's anxieties.

Education providers can often prevent unfavourable treatment that amounts to discrimination arising from disability by making reasonable adjustments.

A failure to make reasonable adjustments

Colleges and universities have a duty to make reasonable adjustments to avoid putting disabled students at a substantial disadvantage compared to non-disabled students. This applies to:

provisions, criteria and practices - the way in which a college or university operates on a daily basis, for example an exclusion or discipline policy

physical features, like entrances and exits, toilets, lighting, flooring and furniture

auxiliary aids and services, like supportive equipment or a member of staff.

The duty to make reasonable adjustments does not apply to 'competence standards'. Colleges and universities use these to gauge a student's level of competence or ability - for example scoring at least 50% in an assessment. However, reasonable adjustments must be made so that the assessment process itself does not disadvantage disabled students.

For example, the mark required to pass an exam would be a competence standard, so wouldn't be subject to the duty to make reasonable adjustments. This means a college does not have to lower the pass mark for autistic students. However, it might be considered a reasonable adjustment to give an autistic person more time to complete an exam and/or a laptop if their disability causes them to write more slowly.

You'll find more examples of reasonable adjustments that can be made for exams (also known as 'access arrangements' or 'special arrangements') in our exam guidance. An adjustment would not be considered reasonable if it affects the security or integrity of the assessment.

A recent tribunal ruling means that schools and colleges must have made appropriate reasonable adjustments for autistic or disabled students, aged under 18, before they can exclude them. Previously, a loophole in the Equality Act meant schools didn't have to make reasonable adjustments for disabled children when they had a 'tendency to physical abuse', even when that was caused by a lack of appropriate support.

However, this loophole has been closed and allowances should be made for behaviour that's due to a student's autism and their needs not being met. Colleges and universities need to make reasonable adjustments so that students can fully participate in their education.

While the ruling applies to all children in any education environment, including colleges, all institutions should consider its implications for their autistic students. When it comes to reasonable adjustments, education providers should consider:

if the student is at a substantial disadvantage, such as falling behind with coursework

if the disadvantage could be avoided, for example by using one-to-one support or specialist teaching

if it's reasonable to take these steps.

The term 'reasonable' is not defined in the Equality Act, but things that are likely to be taken into account are:

the extent to which the disadvantage would be overcome

the resources the education provider has, and the costs and practicality of making the adjustment

the type of education, benefit, service or facility being provided

how being autistic affects the student

how much other support the student gets, for example Disabled Students Allowance or an EHC plan

health and safety requirements

the interests of other students and people.

Examples of reasonable adjustments:

An autistic student finds it hard to keep up with the lectures. The lecturer gives them a printout of the PowerPoint presentation prior to the lecture and organises one-to-one time with the student after the lecture to discuss its content.

A college or university decides that all the classes on a particular subject are held on one site, rather than two. Or they ensure that students with mobility or anxiety issues are given enough time and support in travelling between sites. This could eliminate any potential discrimination.

Colleges take into account the reasons why an autistic student is upset and using inappropriate language in a tutorial. For example, the tutor may have missed a tutorial session, causing the student distress as they find it difficult to cope with unexpected changes. As a result, the college does not suspend the student for this incident.

It's unlawful for a college or university to ask a student to pay for reasonable adjustments. To help them avoid discriminating unlawfully, education providers should:

plan in advance, anticipate the requirements of autistic students and review the reasonable adjustments in place

offer students plenty of chances to let them know if they're autistic, including at the pre-entry and admissions stages

ask autistic students for their views on reasonable adjustments and consult local and national disability groups

properly maintain auxiliary aids and have contingency plans in place in case of failure

encourage staff to develop additional skills for working with autistic students

ensure staff are aware of their duty to make reasonable adjustments and understand how to communicate with autistic students so that reasonable adjustments can be identified and made.

Harassment and victimisation

If you've made a complaint or allegation of discrimination against a college or university and they treat you unfairly as a result, this is unlawful victimisation. This also applies if they treat anyone else who helped with the complaint unfairly (subjects them to a detriment).

Harassment is any behaviour, by staff, that's related to a student's disability and has the purpose or effect of:

violating their dignity, or

creating an intimidating, hostile, degrading, humiliating or offensive environment for them.

It is not necessary for the student to say that he or she objects to the behaviour for it to be unwanted.

For example, a college tutor repeatedly makes remarks about autistic people belonging in special schools and hospitals and not in college. An autistic student is in the class and finds the tutor's behaviour degrading and offensive. This could be harassment related to the protected characteristic of disability.

What can I do if I've been discriminated against?

If you feel you've been discriminated against, you can:

A county or sheriff court can:

declare whether unlawful discrimination, harassment or victimisation has taken place

order the education provider to take an action (like accepting your application) or stop them from discriminating against you in the future

order the education provider to compensate you

order the education provider, or you, to pay legal costs.

If you feel you've been excluded from a college or university in Great Britain as the result of disability discrimination, read our Exclusion from college or university (Great Britain) guide.

Useful reading

What equality law means for you as a student in Further or Higher Education, 2014. Equality and Human Rights Commission.

Equality Act 2010 Technical Guidance on Further and Higher Education, 2014. Equality and Human Rights Commission.

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Disability discrimination in further and higher education

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Advice on disability discrimination in colleges, universities and other providers of further and higher education in England, Wales and Scotland

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A children’s adventure fantasy story mixed with a sense of realism surrounding the world of dyslexia.

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Description
DOG-LEXIUS: A TAIL OF TWO FRIENDS
By Susan Stewart
Illustrated by Nick Awde

198pp | paperback | £6.99 | Publication date July 28, 2021 | ISBN: 9781908755445

SPECIAL LAUNCH OFFER: FREE POSTAGE

Support independent publishing, order here direct from deserthearts.com.
Also available from all online/bricks & mortar book stores.

Dog-Lexius... A Tail of Two Friends is a children's adventure fantasy story mixed with a sense of realism surrounding the world of dyslexia. Whilst being fun for children, the book carries a message for parents whose child may be facing daily difficulties, especially during the school day regarding reading and writing. Illustrated and using dyslexia-friendly fonts, Dog-Lexius is written for 9-11 years but is open to a much wider readership.

Dog-Lexius tells the story of Sam, a nine-year-old boy who loves playing computer games. Sam has a great imagination and would dearly love to own a dog. Sam has fallen behind greatly at school, with his teachers rather unsympathetic towards his struggles or his Mum's self-diagnosis.

One evening Sam falls asleep at his computer whilst creating a space hound to play with. Upon the stroke of midnight, the playful pooch magically comes to life, inviting him on a purposeful adventure into Outer Space and a mysterious Goblin Planet filled with unruly Letters. It's adventure that will change Sam's outlook and change his life.
About Susan Stewart:
After successful career in hairdressing, where she nurtured her people skills, Susan decided to nurture her passion for writing. "I wanted to write for children, I wanted to help them learn and smile whilst they engaged with the story."

With Dog-Lexius, Susan's aim is to help raise awareness of dyslexia, especially within schools, and to reach those who need help and understanding.

She says: "I have a wonderful dyslexic son who has spent years keeping me on my toes. It was he who gave me the insight to write Dog-Lexius, which is really the story of a young boy and his mum, struggling to be heard.

"I believe the story will resonate with so many children and their families. I also believe it comforts and inspires children to see themselves in the stories they read."
A note on Dyslexia
Dyslexia effects at least 10% of Britain's population. It is estimated that at least one in ten people worldwide (700 million) struggle daily with this reading and writing disability and many of them struggle with multiple neurodiversity issues.

CONTACT:
Susan Stewart is available for interview.
Press & orders inquiries: Nick Awde - nick@deserthearts.com / +44 (0)7961154590

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Dog-Lexius: A Tail of Two Friends (July 2021)

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A children's adventure fantasy for 8-11 year olds. Sam, a nine-year-old with dyslexia, creates a dog on his computer who magically comes to life. Together they go on an adventure into Outer Space to a mysterious Goblin Planet filled with unruly Letters. It's an adventure that changes Sam's outlook and life.

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This charity provides assessments, tuition, support for all ages and for parents, training and resources.

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The team at Helen Arkell provide specialist support, advice and information to people with dyslexia, and parents, teachers and employers. Find out more about our resources, courses and other projects here.

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15-minute sessions with the Disability and Neurodiversity team. No diagnosis etc. required.

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At Aucademy © we are a new home for Autistic learning and the education of non-autistic people about Autistic experience

" Kent and Medway Partnership Trust are proud to be collaborating with Aucademy CIC to bring to Kent & Medway four webinars in 2024/25 on up-to-date and relevant topics to support our goal to Transform Autistic Healthcare."

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Welcome to Aucademy© At Aucademy© we are a new home for Autistic learning and the education of non-autistic people about Autistic experience Learn more Aucademy CIC: current projects "Kent and Medway Partnership Trust are proud to be collaborating with Aucademy CIC to bring to Kent & Medway four webinars in 2024/25 on up-to-date and relevant topics...

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Learning about neurodiversity? You'll find terms & definitions, facts, & professional coursework here to bring you more awareness

"One way to enhance a person's well-being and mental health is through employment "

- (Modini et al., 2016; van der Noordt et al., 2014).

Neu·ro·di·ver·si·ty | is the diversity of human brains and minds - the infinite variation in neurocognitive functioning within our species.

Neu·ro·di·ver·gent | sometimes abbreviated as ND, means having a brain that functions in ways that diverge significantly from the dominant societal standards of "normal."

Neu·ro·typ·i·cal | often abbreviated as NT, means having a style of neurocognitive functioning that falls within the dominant societal standards of "normal."

People represented in this category are those with typical diagnostic labels such as:

ASD

ADHD

Anxiety Disorders

Intellectual Disabilities

Schizophrenia

Mood Disorders

Dyslexia

It is estimated that 50,000 youth are transitioning out of school-based services each year and of those youth, 17.4% of proceed onto postsecondary education; however, very few graduate. (Todd, 2018; CDC, 2018).

Two-thirds of young autistics do not move onto employment or other education in the first two years after leaving high school. (Abrams, 2016; HHS, 2017).

Federal projects on lifespan issues, including transition to adulthood, employment, postsecondary education, housing, and co-occurring conditions are dramatically underrepresented, as the smallest segment, with only two percent of the federal and private funding allocated (HHS, 2017).

Studies show that autistic adults are "nine times more likely to die from suicide than other adults" and "five times as likely to attempt suicide as the general public" (Mandell, 2018, p.234).

Neurodiversity movement strives to further the equality, acceptance, and inclusion of the neurologically different within our society.

"the 'Gold Standard of Neurodiversity' to create an online curriculum, so any provider of services for pre-employment transition will have the knowledge they need to be effective for each individual person with autism."

- HAVARD UNIVERSITY

Understanding Autism

[FREE]

Understanding the characteristics of autism spectrum disorder (ASD) and their implications for behavior, learning and the ability to process information is critical for anyone working or interacting with those on the spectrum -- educators, clinicians, counselors, therapists, medical staff, family and employers. This course will give you a fundamental understanding of what ASD is, how it is diagnosed, the primary areas of impairment, and why prevalence is increasing.

[FREE]

This website offers an online course for users to increase their knowledge of autism in general. Autism 101 takes approximately 30 minutes to complete and participants can download a certificate of completion when finished.

After studying this course, you should be able to: a) outline what is meant by autism, why it is considered a spectrum and how it affects different individuals and families. b) appreciate different approaches to understanding autism, including theoretical and clinical perspectives and personal accounts. c) outline key features of psychological, neurobiological and genetic explanations of autism. d) explain key aspects of diagnosis, intervention, education and life-span development. e) understand topical issues including neurodiversity perspectives, autism prevalence in women and autism in global context.

Create an account & get free courses:

This training module is an overview of what both families and educators can do to support the process for transition from adolescence to becoming an adult and why employment is essential.

This module focuses on how to effectively build and maintain family and professional partnerships.

[United Kingdom]

Our new virtual training workshop aims to give you the skills and confidence to help you recruit, integrate and onboard individuals into your workplace.

Our workshop is aimed at managers and leaders that want to increase their awareness of neurodiversity and experience the benefits neurodiverse employees can bring to their organisation.

We recognised that the best way to learn is through real experiences with real people. Our training is created and facilitated by autistic individuals, who have first hand experience of recruitment and employment.

All the training designed and supported by NTI, involves the most modern and cutting-edge research and surveys that are neurodivergent-led! This is the future of learning when it comes to those of us who see and interact with the world differently than most.

NTI is a motivational and empowerment-based training provider that amplifies proud Neurodivergent voices, in the form of training and motivational programmes. We are currently investing time, capital, and resources into building the world's most progressive training platform - for the neurodivergent community, by the neurodivergent community and allies!

"Here is a selection of online resources for families, caregivers and professionals, providing autism-related training for both children and adults with ASDs. Inclusion of any organization does not imply endorsement, and omission does not imply disapproval."

AFIRM offers free online modules to guide application of evidence-based practices with learners from birth to 22 years old. They teach the key components and approaches, behaviors and skills that are addressed by the practice, a process for applying, and resources to download and customize using case examples, multimedia presentations, and interactive assessments. Each module also offers the option to earn a free professional development certificate, if desired. Click the following links for: a list of their modules, more about their educational technique, and guidelines for selecting a module.

The Colorado Department of Education, Kansas TASN Autism and Tertiary Behaviors Supports Group, and the Nebraska Autism Supports Network have collaborated to make 21 webinars available to teachers, administrators, parents, and others who want to learn more about ASD. These webinars are free, and available on-demand online here.

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Neurodiversity 101 | Neurodiversity Network

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Learning about neurodiversity? You'll find terms & definitions, facts, & professional coursework here to bring you more awareness Neu·ro·di·ver·si·ty | is the diversity of human brains and minds - the infinite variation in neurocognitive functioning within our species. Neu·ro·di·ver·gent | sometimes abbreviated as ND, means having a brain that functions in ways that diverge significantly from the dominant societal standards of "normal."

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Darkest Before Dawn: Autism, Ableism, and the Rise of the Neurodiversity Movement

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Darkest Before Dawn: Autism, Ableism, and the Rise of the Neurodiversity Movement

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The struggles of various groups to achieve equal rights were a hallmark of life in the 20 th century. Indeed, from the Winnipeg General Strike[i], through the struggles for gender[ii] and LGBT equality[iii], the 1900s marked a century of change for many souls who- for various reasons- existed outside the traditionally-defined power structure of Western civilization.

Now, the beginning of the 21 st century plays host to another such battle for equal recognition: the disability rights struggle in general and, specifically, the autistic-led Neurodiversity Movement. These related fronts are often forgotten due to the ableist privilege experienced by most people in society, but they must not be overlooked.

The Cure and Crisis Narrative

Autism is, after all, widely portrayed as a health crisis of epidemic proportions by the mainstream media and this interpretation leaves little room for competing views.While the intentions of most people are good, however, the cure-and-crisis narrative serves primarily to embolden those who already possess privilege and, in fact, does more harm than good to autistics themselves.

It's obvious how this could be the case; any human alive who is made to feel worthless or broken by institutional forces is bound to suffer adverse psychological effects.Throughout this piece, I will be exploring just how the cure and crisis narrative adversely impacts neurodivergent individuals, and how the Neurodiversity Movement has provided such people a voice with which to fight back.

Moreover, it will be made clear exactly how important the Neurodiversity Movement is for the well-being of autistics, those with ADHD, and indeed anyone else who falls outside of what is considered the neurodevelopmental "norm."

Key Concepts for Understanding Social Justice Movements

Privilege

As with any other social justice topic, it is essential to first understand some key concepts in order to truly be able to engage with the material- chief among these being privilege. As defined by Merriam-Webster, privilege is "a right or immunity granted as a peculiar benefit, advantage, or favor."[iv]

This is, however, a rather limited definition in desperate need of elaboration. In Privilege Revealed: How Invisible Preference Undermines America, author Stephanie Wildman illustrates the concept of privilege far more effectively, explaining how it consists of several related elements.

"First," she argues, "the characteristics of the privileged group define the social norm, often benefiting those in the privileged group. Second, privileged group members can rely on their privilege and avoid objecting to oppression."[v]

When one considers the state of mental health in our society, the merit of this definition becomes readily apparent. Indeed, the reason most people are not aware of the challenges facing those who are disabled- or assume disability automatically equates with tragedy- is that such challenges are not part of the lived experience of a vast majority of people for whom acclimation to the world did not carry with it any serious difficulties.

Such people can avoid interacting with the discourse surrounding disability and also possess limited, stereotypical ideas of disability because in a very real way it does not exist in their world. In this way, the characteristics of the non-disabled masses have come to define what is considered normal by society and allows them to avoid having the conversation necessary to improve things, leaving those with autism at a disadvantage as theirs is a condition that is not immediately visible.

Privilege becomes more ingrained and normalcy more assumed when faced with those who at first glance appear to look, behave, and think just like everyone else.

Author Christine Overall elaborates on the concept of disability identity in her article, "Old Age and Ageism, Impairment, and Ableism: Exploring the Conceptual and Material Connections." In it, she illustrates how while most social theorists are more-than-willing to acknowledge that identity is socially constructed to a point (in the words of Simone de Beauvoir, one is not born, let alone conceived, a woman, an Aboriginal, a disabled person, or an elderly person but rather becomes those things), the line such academics draw in the sand is typically with regards to perceived core biological realities such as aging and disability. People may adopt a disability identity, but it is as the result of a biological truth, according to most sociologists. Overall, however, rejects this notion, arguing instead that such a perception serves to excuse and perpetuate oppression against disabled and elderly individuals.[vi]

This makes perfect sense - after all, if society had been left to its understanding that the female sex presented an inherent biological disadvantage, women would never have progressed as far as they have (though more progress is, of course, still needed). Feminism rose to challenge this perception, and while biological differences will always be understood, they are gradually falling away as barriers to success. Overall presents ageism and ableism as being comparable constructs. Recognition of the socially-constructed nature of both identity and disability is therefore essential, as without this aspect, physical and mental health conditions are merely part of the life circumstances of many. Social perception gives them worth in the best cases and takes it away in the worst. This is especially true in the case of mental health conditions, as they are often constructed based on observation of behaviours in patients that fall outside the arbitrarily-decided social norm. Normal is, after all, subjective. In the words of the immortal Morticia Adams, "What is normal to the spider is chaos to the fly."[vii] This leads perfectly into the next term in need of definition.

Neurodiversity

Neurodiversity, according to prominent autistic advocate John Elder Robinson, is the idea that conditions such as autism and ADHD are the result of natural brain variation rather than flaws to be corrected.[viii] When combined, it becomes evident how privilege and neurodiversity relate to each other in the context of disability rights, especially due to the prevalence of the cure-based narrative in pop culture and most academic literature.

The mainstream population, of course, is privileged in that their experiences of the world are shared by a majority of humans. Those with mental health conditions, on the other hand, are routinely expected by society to conform to the diagnoses they have been given, along with all of the social perceptions that go with them.

In his article "Cultural Conceptions, Mental Disorders, and Social Roles: A Comparison of Germany and America," author J. Marshall Townsend refers to this effect as a self-fulfilling prophecy; diagnosing an individual with autism, for example, will result both in the public perceiving him/her in a specific way, as well as in the individual themselves rising to meet the expectations placed upon them.[ix]

This preconceived bias deprives disabled people and others of their agency. As anyone familiar with feminism will know, such strictly-defined social roles and expectations are among the many ways that privilege is reinforced in society; and as has been previously established, things are no different in the context of mental health.

In this way, disabled individuals are not unlike others living outside the bounds of what is socially accepted, such as LGBTQ, people of colour and women since each group has at one time or another been the victim of power politics designed to give other groups privilege at their expense.

The History of Neurodiversity

To say that the history of those with neurodevelopmental conditions has been a dark one would be putting it mildly. During the 1930s and 40s in Nazi Germany, for example, the government launched what was called the T4 initiative; a focused effort to use eugenics and selective breeding to eliminate certain traits deemed 'undesirable' from the human gene pool.

In practice, however, the T4 program routinely performed euthanasia against children and adults deemed 'feeble-minded,' 'mentally retarded,' and of course those on the autism spectrum. The Nazis hoped to use the Aktion T-4 project (as it was officially known), to eliminate anyone with incurable chronic illnesses, and it was the assertion of author Steve Silberman that this program served as a template with which Hitler honed his final goal.

The Nazi party even developed a sanitized, clinical language for referring to the atrocities committed against disabled people, with the fatal act itself known as 'final medical assistance.'[x] Conditions had not improved when Leo Kanner first published on the subject of the 'unique' disorder he referred to as autism.

Kanner described autism as being caused by cold, cruel parenting and found it almost inconceivable that those patients he saw whom he deemed to be autistic were as interested in their fixations as they seemed.[xi] As a result of this, early autistic treatments advocated for years of psychoanalysis and internment at a psychiatric institution for life[xii]; truly a tragic fate for those naturally born differently.

The rise of parents' groups and their hopes for a cure- while understandable and all-too-human- also did more harm than good for autistics. The cause of this lay with a behaviourist by the name of Ole Ivar Lovaas. Lovaas studied conditioning and applied it to the treatment of autistic individuals, a process he referred to as Applied Behaviour Analysis (ABA).[xiii]

On the surface, this intervention sounded promising, and it certainly encouraged parental groups at the time who found themselves clamoring for ways to apply Lovaas' method to their children. The practice becomes morally objectionable, however, when one considers the doctor's own philosophy regarding people with autism. The following is what he had to say in a 1974 Psychology Today interview:

You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense- they have hair, a nose, a mouth- but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.[xiv]

Lovaas' description of autistics is only the first indicator of the dark path his research took. In the same interview, the doctor also described using electroshock and full body restraints on children he was treating if they continued to manifest autistic behaviour. Beyond that, he was quite proud of himself and further justified the pain he caused his subjects in the name of giving parents a collaborative hope for their children's futures.[xv]

If Lovaas' views sound at all reprehensible in light of the current focus on understanding and compassion, then it has already become apparent to modern readers how harmful treatments for autistics have historically been. According to philosopher Michel Foucault, however, individuals do not create power dynamics through their agency alone; indeed such intricate patterns of institutionalized power typically emerge from the interplay between various social groups and forces.[xvi]

Such nuanced power inequities also empowered Lovaas' ABA treatment and the parents' groups who embraced it. After all, ever since Leo Kanner first co-discovered Autism with Hans Asperger, it has widely been seen as a terrible disease that has mystified researchers.[xvii] Given this negative reputation, it is not hard to believe that parents of autistic individuals were willing to give even a man as eccentric as Lovaas a chance to help their children.

Autism is, of course, a spectrum, with many manifestations of the same or similar conditions. Communications and social deficits typically characterize it, but how these appear varies based on the individual.[xviii] Therefore, no two cases are alike and it is ridiculous to assume, as Lovaas suggested, that autistics are incomplete humans. The variety present on the Autism spectrum introduces another problem for those autistics who can pass as 'normal' and get by in mainstream society.

In addition to the number of kids on the Autism Spectrum shown above, 11% of children aged 4-17 also possessed a diagnosis of Attention Deficit Hyperactivity Disorder (ADHD) as of 2011. [xx] Most of those who form part of either of these groups (Autistics and those with ADHD) can survive in the everyday world with varying degrees of efficacy, and so are not typically thought of as 'disabled' for the purposes of additional assistance and accommodations.

It is into this complicated maelstrom of competing interests and focuses that Neurodiversity was born, and it is arguably one of the greatest moments for disabled people in modern history. Neurodiverity originated in 1999 with author Judy Singer.

For me, the key significance of the 'Autistic Spectrum' lies in its call for and anticipation of a politics of neurological diversity, or what I want to call 'Neurodiversity.' The Neurologically Different represent a new addition to the familiar political categories of class/gender/race and will augment the insights of the social model of disability."[xxii]-Judy Singer

What Singer could not have known in those early days, however, was how widespread and powerful the idea of Neurodiversity would become. Since her first humble assertion of the concept, autistics and those with ADHD, among many others, have organized with the proliferation of the internet into coherent communities with stated goals and internal subcultures.

Pushback Against Neurodiversity

Neurodiversity as a concept has galvanized and inspired neurodivergent individuals worldwide to take back their existences from the parent's groups and clinical researchers who have long sought to label, downplay, and otherwise limit their potentials. Whereas organizations such as Autism Speaks have historically poured most of their operating budgets into cure-based autism research[xxv], autistics themselves had begun demanding recognition of their fundamental rights.

This clash did emerge in December 2007, and it would mark a historic turning point for the relationship between neurodivergent individuals and the public perceptions stacked against them. During the holiday season that year, ads were placed by the New York University Child Study Center around the city designed to promote discussion of childhood mental illness.

Naturally, disability advocacy groups like the Autistic Self Advocacy Network were not thrilled. According to Steve Silberman, "Autistics were challenging a conversation about autism in mainstream media without the help of a parent-run organization that claimed to speak for them."[xxvii]

Historically, those with disabilities had been portrayed as damaged 'others' in the public discourse, and so while the head of the Child Study Center at NYU did have in mind the honourable intention of combatting the stigma surrounding mental health, the 'hostage ads,' accomplished the opposite far more efficiently.

After examining the brief and albeit-incomplete history of Autism, Asperger's, ADHD, and the Neurodiversity movement presented here, it becomes clear that the movement towards acceptance and self-advocacy on the parts of individuals with neurodivergent brains is crucial.

When one considers revolutionary history, it is even easier to be dismayed by the history of mental health. After all, while "no taxation without representation" is a phrase implicitly understood to mean that the governed should be consulted in a political context [xxx], this same courtesy has not yet been fully extended to those with mental health conditions such as Autism and ADHD.

References

[ii] The Canadian Encyclopedia, "Women's Movements in Canada," http://www.thecanadianencyclopedia.ca/en/article/womens-movement/.

[iii] American Psychological Association, "History of Lesbian, Gay and Bisexual Social Movements," http://www.apa.org/pi/lgbt/resources/history.aspx.

[iv] Merriam-Webster Online Dictionary, "Privilege," https://www.merriam-webster.com/dictionary/privilege.

[v] Stephanie Wildman, Privilege Revealed: How Invisible Preference Undermines America (New York: New York University Press, 1996), 24-26.

[vi] Christine Overall, "Old Age and Ageism, Impairment and Ableism: Exploring the Conceptual and Material Connections," NWSA Journal vol. 18 no. 1 (Spring 2006): 126.

[vii] Goodreads, "Charles Addams - Quotes," https://www.goodreads.com/quotes/707032-normal-is-an-illusion-what-is-normal-for-the-spider.

[viii] Psychology Today, "What is Neurodiversity?" https://www.psychologytoday.com/blog/my-life-aspergers/201310/what-is-neurodiversity.

[ix] J. Marshall Townsend, "Cultural Conceptions, Mental Disorders and Social Roles: A Comparison of Germany and America," American Sociological Review 40, No. 6 (Dec. 1975): 739.

[x] Steve Silberman, Neurotribes: The Legacy of Autism and the Future of Neurodiversity (New York: Penguin, 2015), 80-81.

[xi] Silberman, 114.

[xii] Silberman, 121.

[xiii] Silberman, 171.

[xiv] Neurodiversity.com - Library of the History of Autism Research, Behaviourism and Psychiatry, " 'After you hit a child, you can't just get up and leave him; you are hooked to that kid' O. Ivar Lovaas Interview with Paul Chance," http://neurodiversity.com/library_chance_1974.html.

[xvi] Licia Carleson, "Cognitive Ableism and Disability Studies: Feminist Reflections on the History of Mental Retardation," Hypatia vol. 16, no. 4 (2001): 125.

[xvii] Sliberman, 98-99.

[xviii] "Autism Spectrum Disorder," in The Diagnostic And Statistical Manual of Mental Disorders Fifth Edition (Washington: American Psychiatric Association, 2013): 50.

[xix] Autism Society, "Facts and Statistics," last updated August 26 2015, http://www.autism-society.org/what-is/facts-and-statistics/.

[xx] Centers for Disease Control and Prevention - Attention-Deficit Hyperactivity Disorder (ADHD), "Data and Statistics," last updated Feb 2017. https://www.cdc.gov/ncbddd/adhd/data.html.

[xxi] Kim Hall, "Feminism, Disability, and Empowerment," NWSA Journal vol. 14 no. 3 (Autumn 2002): xi.

[xxii] Thomas Armstrong, The Power of Neurodiversity: Unleashing the Advantages of Your Differently Wired Brain (Philadelphia: Da Capo Press, 2010): 13-14.

[xxiii] Autistic Self Advocacy Network, "About ASAN," http://autisticadvocacy.org/home/about-asan/.

[xxiv] Wrong Planet, "About Wrong Planet," http://wrongplanet.net/about-wrong-planet/.

[xxv] Autism Speaks Return of Organization Exempt From Income Tax, 2010, Form 990 OMB 1545-0047.

[xxvi] Robin Shulman, "Child Study Center Cancels Autism Ads," Washington Post, December 20, 2007, http://www.washingtonpost.com/wp-dyn/content/article/2007/12/19/AR2007121902230.html.

[xxvii] Silberman, 275-76.

[xxviii] Robim Shulman, "Child Study Center Cancels Autism Ads," Washington Post, December 20, 2007, http://www.washingtonpost.com/wp-dyn/content/article/2007/12/19/AR2007121902230.html.

[xxx] United States History, "No Taxation Without Representation," http://www.u-s-history.com/pages/h640.html.

Works Cited

Primary Sources

American Psychiatric Association. The Diagnostic and Statistical Manual of Mental Disorders 5th Edition. Arlington: American Psychiatric Press, 2013.

Autistic Self Advocacy Network. "About ASAN." http://autisticadvocacy.org/home/about-asan/.

Autism Speaks Return of Organization Exempt From Income Tax, 2010, Form 990 OMB 1545-0047.

Autism Society. "Facts and Statistics." last updated August 26 2015. http://www.autism-society.org/what-is/facts-and-statistics/.

Centers for Disease Control and Prevention - Attention-Deficit Hyperactivity Disorder (ADHD), "Data and Statistics," last updated Feb 2017. https://www.cdc.gov/ncbddd/adhd/data.html.

Goodreads. "Charles Addams - Quotes." https://www.goodreads.com/quotes/707032-normal-is-an- illusion-what-is-normal-for-the-spider.

Neurodiversity.com - Library of the History of Autism Research, Behaviourism and Psychiatry.

"'After you hit a child, you can't just get up and leave him; you are hooked to that kid' O. Ivar Lovaas Interview with Paul Chance." http://neurodiversity.com/library_chance_1974.html.

Shulman, Robin. "Child Study Center Cancels Autism Ads." Washington Post. December 20, 2007. http://www.washingtonpost.com/wp-dyn/content/article/2007/12/19/AR2007121902230.html.

Wrong Planet. "About Wrong Planet." http://wrongplanet.net/about-wrong-planet/.

Secondary Sources

American Psychological Association. "History of Lesbian, Gay and Bisexual Social Movements." http://www.apa.org/pi/lgbt/resources/history.aspx.

Armstrong, Thomas. The Power of Neurodiversity: Unleashing the Advantages of Your Differently Wired Brain. Philedelphia: Da Capo Press, 2010.

Canadian Public Health Association. "Fighting the Good Fight: Winnipeg General Strike of 1919." http://www.cpha.ca/en/programs/history/achievements/10-sw/winnipeg.aspx.

The Canadian Encyclopedia. "Women's Movements in Canada." http://www.thecanadianencyclopedia.ca/en/article/womens-movement/.

Carleson, Licia. "Cognitive Ableism and Disability Studies: Feminist Reflections on the History of Mental Retardation." Hypatia vol. 16, no. 4 (2001): 124-146.

Merriam-Webster Online Dictionary. "Privilege." https://www.merriam-webster.com/dictionary/privilege.

Overall, Christine. "Old Age and Ageism, Impairment and Ableism: Exploring the Conceptual and Material Connections." NWSA Journal vol. 18 no. 1 (Spring 2006): 126-137.

Psychology Today. "What is Neurodiversity?" https://www.psychologytoday.com/blog/my-life-aspergers/201310/what-is-neurodiversity.

Hall, Kim. "Feminism, Disability, and Empowerment." NWSA Journal vol. 14 no. 3 (Autumn 2002): vii-xiii.

Silberman, Steve. Neurotribes: The Legacy of Autism and the Future of Neurodiversity. New York: Penguin, 2015.

Townsend, J. Marshall. "Cultural Conceptions, Mental Disorders and Social Roles: A Comparison of Germany and America." American Sociological Review 40, No. 6 (Dec 1975): 739-752.

United States History. "No Taxation Without Representation." http://www.u-s-history.com/pages/h640.html.

Wildman, Stephanie. Privilege Revealed: How Invisible Preference Undermines America. New York: New York University Press, 1996.

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Darkest Before Dawn: Autism, Ableism, and the Rise of the Neurodiversity Movement

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The struggles of various groups to achieve equal rights were a hallmark of life in the 20 th century. Indeed, from the Winnipeg General Strike[i], through the struggles for gender[ii] and LGBT equality[iii], the 1900s marked a century of change for many souls who- for various reasons- existed outside the traditionally-defined power structure of Western civilization.

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Tourettes Action is a support and research charity working to improve the lives of people living with Tourette Syndrome. Our services include online live-chat and email support, a befriender network, information, webinars, events and resources.

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What is Dyscalculia? - The Dyslexia Association

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Developmental Dyscalculia, like dyslexia, is one of a family of specific learning difficulties.

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What is Irlen Syndrome? Irlen Syndrome is a light-based visual processing problem. Specifically, it is a cluster of symptoms caused when the brain struggles to process light and visual stimuli efficiently. Irlen Syndrome is not a reading problem, is not dyslexia, is not an issue with sight or vision, … Continue reading →

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A blog about autism and my life as a late-diagnosed autistic Professor.

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Exceptional Individuals | Neurodiverse Recruitment & Employee Support

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At Exceptional Individuals we provide neurodiverse recruitment & employment services for neurodivergent people & companies trying to be more neurodiverse!

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Welcome to The New Autistic UK CIC WebSite | Autistic UK CIC

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Welcome to Autistic UK: an autistic-led organisation for autistic people and their families. Covid-19 coronavirus information is available.

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The ADHD Foundation Neurodiversity Charity - an integrated health and education service.

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Supporting individuals and families affected by dyspraxia/DCD

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According to the Department of Education, 15% of students in the United Kingdom have a learning difference. I am one of these students. Many students with special educational needs (SEN) have negative school experiences. I know what it feels like to be frustrated, embarrassed and humiliated at school. I also know what it feels like to have some teachers and classmates assume you are not smart. At school, we are constantly reminded of what we can't do. This can be very discouraging and demoralising.

Many neurodivergent adults look back on their school experience in a negative light. Many of these adults spent much of their time at school feeling bad about themselves. They were often made to feel like failures. No one should ever be made to feel this way. By acknowledging and celebrating the strengths of SEN students, we can begin the seismic shift of changing the way students with special needs are perceived and treated at school and also the change the way neurodivergent students feel about themselves. My hope is that all students have happy, positive and fulfilling school experiences.

I n order to empower SEN students to flourish, schools need to stop focusing only on what we cannot do and should begin to recognise, nurture and celebrate the many strengths and talents of being neurodiverse . It is important for schools to recognise our creativity, innovation, ability to think outside-the-box, problem-solving skills, unique insights and perspectives, as well as our perseverance and resilience.

The future business leaders.

We are the trailblazers.

We are the Einsteins and Bransons of tomorrow.

Yet, our ability to fulfil our potential is being threatened by the stigma associated with having a special educational need and the misconceptions many people still have about autistic people and people with learning differences. We are also more vulnerable to being mistreated. In a 2017 bullying report by Ditch the Label, 75% of autistic students and 70% of students with learning differences reported being bullied at school.

It is time to create a more inclusive educational landscape so that SEN students have equal access to education. But in order to bring about this change, we need your help. Please support SEN students by registering to take part in Neurodiversity Celebration Week this March 15 - 21, 2021 . Please join the other 830 schools and over 565,000 students from around the world that are taking part.

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Neurodiversity Celebration Week - Pledge

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According to the Department of Education, 15% of students in the United Kingdom have a learning difference. I am one of these students. Many students with special educational needs (SEN) have negative school experiences. I know what it feels like to be frustrated, embarrassed and humiliated at school.

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Neurodivergent employees face particular challenges and often experience work-related stress:

In every workplace, there is a level of conformity. Whether that is an expectation for people to follow instructions, or an expectation for people to sit still and concentrate in noisy environments. But in every workforce, there is a level of divergence as well.

Not everyone is the same, and an increasing field of research suggests neurodivergent people are more likely to find some workplace conditions stressful and anxiety-inducing compared to others.

The reason is not agreed upon but anxiety for neurodivergent individuals could stem from a tendency to deal differently with change, and a sensitivity to unexpected stimuli.

It is estimated that roughly 40% of individuals on the autism spectrum have at least one anxiety disorder and individuals with dyslexia are more likely to suffer from depression.

Some neurodivergent people have difficulty in reading people and what to expect from them, which is compounded in a workplace where colleagues constantly interact.

Much like school, where traditional learning can inhibit neurodivergent children's development, office life can make neurodivergent people feel overwhelmed leading to social isolation and low self-esteem. Mental health and neurodivergence are hereby common occurrences.

'Working memories' is one factor in work-related stress:

So what connects neurodivergent people, workplace conditions and mental health? One theory is 'working memories'. 'Working memories' is the amount you can hold in your focused attention before you start to forget things, and people with dyslexia sometimes struggle with this.

While neurodiverse people can have impressive long-term memories, difficulty in 'working memories' can hamper concentration in busy environments, disrupt conversations in packed meetings and create difficulties following tasks if someone is instructed only once.

There is a lack of general awareness about 'working memory' issues and auditory memory more generally, and line managers might exacerbate problems through over-complicating instructions or not understanding people's difficulties with their environment.

In-work support can help tackle issues in the office:

Difficulty concentrating in workplace environment → Use headphones or ear plugs

In-work support can substantially help to address these issues though with, for example, IT solutions such as software and equipment updates. For noisy environments, the use of headphones and ear plugs can focus attention when working and it might be helpful to find a quieter place for neurodivergent colleagues in the office to work.

Other sensory stimuli like bright lighting can distract those with autism and ADHD so swapping overhead office lights for desk lamps, which mimic natural light, reduces stress.

Recommendation:

Lindy Headphones - headphones to help cancel background noise at work.

ReadEZ - coloured reading panel software that reduces visual stress and brightness.

Lack of awareness from line managers → Awareness training and information tools:

Offering awareness training to employers and colleagues on mental health and neurodivergence can be beneficial too, and make them aware of the challenges neurodivergent individuals face in the workplace. This could lead to managers repeating instructions more than once and delivering instructions in a sensory format that is easier to process.

Most work desks no longer have trays and filing drawers either. But employee in-trays, post-it notes and additional monitors are common solutions to giving instructions in different ways now.

Recommendation
Time management tools: Voice to text software:
Lack of support in the workplace → Coaching, mentoring and support circles inside/outside work:

There is also the option to coach individuals on how to approach these challenges personally and to improve their own internal strategies for coping in the workplace. Support circles and mentoring programmes inside and outside the workplace helps, and external coaches can take a holistic view of the employee's well-being, including their mental health.

From knowing the rules of a chaired meeting, to keeping questions and comments in note form when needed, in-work support services can tackle problems springing from the environment, employers and employees.

The way a workplace relates to its workforce is integral to how people feel and respond in an office. While there will always be a level of conformity in the workplace, it is important to recognise divergence in the workforce too.

More and more research is showing neurodivergent people disproportionately experience work-related stress, which in turn impacts on their mental health.

At Exceptional Individuals we offer in-work support to tackle work-related stress and make workplaces more inclusive. If you think you need support or that your workplace could benefit from our approach then please call us on (+44) 0208 133 6046.

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Neurodiversity and Mental Health | Exceptional Individuals

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Neurodivergent employees face particular challenges and often experience work-related stress: In every workplace, there is a level of conformity. Whether that is an expectation for people to follow instructions, or an expectation for people to sit still and concentrate in noisy environments. But in every workforce, there is a level of divergence as well.

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The Advantages of Dyslexia: With reading difficulties can come other cognitive strengths

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The Advantages of Dyslexia: With reading difficulties can come other cognitive strengths

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"There are three types of mathematicians, those who can count and those who can't."

Bad joke? You bet. But what makes this amusing is that the joke is triggered by our perception of a paradox, a breakdown in mathematical logic that activates regions of the brain located in the right prefrontal cortex. These regions are sensitive to the perception of causality and alert us to situations that are suspect or fishy - possible sources of danger where a situation just doesn't seem to add up.

Many of the famous etchings by the artist M.C. Escher activate a similar response because they depict scenes that violate causality. His famous " Waterfall " shows a water wheel powered by water pouring down from a wooden flume. The water turns the wheel, and is redirected uphill back to the mouth of the flume, where it can once again pour over the wheel, in an endless cycle. The drawing shows us a situation that violates pretty much every law of physics on the books, and our brain perceives this logical oddity as amusing - a visual joke.

The trick that makes Escher's drawings intriguing is a geometric construction psychologists refer to as an " impossible figure," a line-form suggesting a three-dimensional object that could never exist in our experience. Psychologists, including a team led by Catya von Károlyi of the University of Wisconsin-Eau Claire, have used such figures to study human cognition. When the team asked people to pick out impossible figures from similarly drawn illustrations that did not violate causality, they were surprised to discover that some people were faster at this than others. And most surprising of all, among those who were the fastest were those with dyslexia.

Dyslexia is often called a "learning disability." And it can indeed present learning challenges. Although its effects vary widely, children with dyslexia read so slowly that it would typically take them a half a year to read the same number of words other children might read in a day. Therefore, the fact that people who read so slowly were so adept at picking out the impossible figures was a big surprise to the researchers. After all, why would people who are slow in reading be fast at responding to visual representations of causal reasoning?

Though the psychologists may have been surprised, many of the people with dyslexia I speak with are not. In our laboratory at the Harvard-Smithsonian Center for Astrophysics we have carried out studies funded by the National Science Foundation to investigate talents for science among those with dyslexia. The dyslexic scientist Christopher Tonkin described to me his sense of this as a sensitivity to "things out of place." He's easily bothered by the weeds among the flowers in his garden, and he felt that this sensitivity for visual anomalies was something he built on in his career as a professional scientist. Such differences in sensitivity for causal perception may explain why people like Carole Greider and Baruj Benacerraf have been able to perform Nobel prize-winning science despite lifelong challenges with dyslexia.

In one study, we tested professional astrophysicists with and without dyslexia for their abilities to spot the simulated graphical signature in a spectrum characteristic of a black hole. The scientists with dyslexia -perhaps sensitive to the weeds among the flowers- were better at picking out the black holes from the noise, an advantage useful in their careers. Another study in our laboratory compared the abilities of college students with and without dyslexia for memorizing blurry-looking images resembling x-rays. Again, those with dyslexia showed an advantage, an advantage in that can be useful in science or medicine.

Why are there advantages in dyslexia? Is it something about the brains of people with dyslexia that predisposes them to causal thinking? Or, is it a form of compensation, differences in the brain that occur because people with dyslexia read less? Unfortunately, the answer to these questions is unknown.

One thing we do know for sure is that reading changes the structure of the brain. An avid reader might read for an hour or more a day, day in and day out for years on end. This highly specialized repetitive training, requiring an unnaturally precise, split-second control over eye movements, can quickly restructure the visual system so as to make some pathways more efficient than the others.

When illiterate adults were taught to read, an imaging study led by Stanislas Dehaene in France showed that changes occurred in the brain as reading was acquired. But, as these adults developed skills for reading, they also lost their former abilities to process certain types of visual information, such as the ability to determine when an object is the mirror image of another. Learning to read therefore comes at a cost, and the ability to carry out certain types of visual processing are lost when people learn to read. This would suggest that the visual strengths in dyslexia are simply an artifact of differences in reading experience, a trade-off that occurs as a consequence of poor reading in dyslexia.

My colleagues and I suggested that one reason people with dyslexia may exhibit visual talents is that they have difficulty managing visual attention. It may at first seem ironic that a difficulty can lead to an advantage, but it makes sense when you realize that what we call "advantages" and "disadvantages" have meaning only in the context of the task that needs to be performed.

For example, imagine you're looking to hire a talented security guard. This person's job will be to spot things that look odd and out of place, and call the police when something suspicious -say, an unexpected footprint in a flowerbed- is spotted. If this is the person's task, would you rather hire a person who is an excellent reader, who has the ability to focus deeply and get lost in the text, or would you rather hire a person who is sensitive to changes in their visual environment, who is less apt to focus and block out the world?

Tasks such as reading require an ability to focus your attention on the words as your eyes scan a sentence, to quickly and accurately shift your attention in sequence from one word to the next. But, to be a good security guard you need an opposite skill; you need to be able to be alert to everything all at once, and though this isn't helpful for reading, this can lead to talents in other areas. If the task is to find the logical flaw in an impossible figure, then this can be done more quickly if you can distribute your attention everywhere on the figure all at once. If you tend to focus on the visual detail, to examine every piece of the figure in sequence, it could take you longer to determine whether these parts add up to the whole, and you would be at a disadvantage.

A series of studies by an Italian team led by Andrea Facoetti have shown that children with dyslexia often exhibit impairments in visual attention. In one study, Facoetti's team measured visual attention in 82 preschool children who had not yet been taught to read. The researchers then waited a few years until these children finished second grade, and then examined how well each child had learned reading. They found that those who had difficulty focusing their visual attention in preschool had more difficulty learning to read.

These studies raise the possibility that visual attention deficits, present from a very early age, are responsible for the reading challenges that are characteristic of dyslexia. If this theory is upheld, it would also suggest that the observed advantages are not an incidental byproduct of experience with reading, but are instead the result of differences in the brain that were likely present from birth.

If this is indeed the case, given that attention affects perception in very general ways, any number of advantages should emerge. While people with dyslexia may tend to miss details in their environment that require an attentional focus, they would be expected to be better at noticing things that are distributed more broadly. To put this another way, while typical readers may tend to miss the forest because it's view is blocked by all the trees, people with dyslexia may see things more holistically, and miss the trees, but see the forest.

Among other advantages observed, Gadi Geiger and his colleagues at MIT found that people with dyslexia can distribute their attention far more broadly than do typical readers, successfully identifying letters flashed simultaneously in the center and the periphery for spacings that were much further apart. They also showed that such advantages are not just for things that are visual, but that they apply to sounds as well. In one study, simulating the sounds of a cocktail party, they found that people with dyslexia were able to pick out more words spoken by voices widely-distributed in the room, compared with people who were proficient readers.

Whether or not observations of such advantages -measured in the laboratory- have applications to talents in real life remains an open question. But, whatever the reason, a clear trend is beginning to emerge: People with dyslexia may exhibit strengths for seeing the big picture (both literally and figuratively) others tend to miss. Thomas G. West has long argued that out-of-the-box thinking is historically part and parcel of dyslexia, and more recently physicians Brock and Fernette Eide have advanced similar arguments. Sociologists, such as Julie Logan of the Cass Business School in London agree. Logan found that dyslexia is relatively common among business entrepreneurs; people who tend to think differently and see the big picture in thinking creatively about a business.

Whatever the mechanism, one thing is clear: dyslexia is associated with differences in visual abilities, and these differences can be an advantage in many circumstances, such as those that occur in science, technology, engineering and mathematics. In physics we know that an engine is capable of productive work only when there are differences in temperature, hot versus cold. It's only when everything is all the same that nothing productive can get done. Neurological differences similarly drive the engine of society, to create the contrasts between hot and cold that lead to productive work. Impairments in one area can lead to advantages in others, and it is these differences that drive progress in many fields, including science and math. After all, there are probably many more than three kinds of mathematicians, and society needs them all.

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With reading difficulties can come other cognitive strengths

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Neurodiversity Rewires Conventional Thinking About Brains

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Neurodiversity Rewires Conventional Thinking About Brains

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In the late 1990s, a sociologist named Judy Singer-who is on the autism spectrum herself-invented a new word to describe conditions like autism, dyslexia, and ADHD: neurodiversity. In a radical stroke, she hoped to shift the focus of discourse about atypical ways of thinking and learning away from the usual litany of deficits, disorders, and impairments. Echoing positive terms like biodiversity and cultural diversity, her neologism called attention to the fact that many atypical forms of brain wiring also convey unusual skills and aptitudes.

Autistic people, for instance, have prodigious memories for facts, are often highly intelligent in ways that don't register on verbal IQ tests, and are capable of focusing for long periods on tasks that take advantage of their natural gift for detecting flaws in visual patterns. By autistic standards, the "normal" human brain is easily distractible, is obsessively social, and suffers from a deficit of attention to detail. "I was interested in the liberatory, activist aspects of it," Singer explained to journalist Andrew Solomon in 2008, "to do for neurologically different people what feminism and gay rights had done for their constituencies."

The new word first appeared in print in a 1998 Atlantic article about Wired magazine's website, HotWired, by journalist Harvey Blume. "Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general," he declared. "Who can say what form of wiring will prove best at any given moment? Cybernetics and computer culture, for example, may favor a somewhat autistic cast of mind."

Thinking this way is no mere exercise in postmodern relativism. One reason that the vast majority of autistic adults are chronically unemployed or underemployed, consigned to make-work jobs like assembling keychains in sheltered workshops, is because HR departments are hesitant to hire workers who look, act, or communicate in non-neurotypical ways-say, by using a keyboard and text-to-speech software to express themselves, rather than by chattering around the water cooler.

One way to understand neurodiversity is to remember that just because a PC is not running Windows doesn't mean that it's broken. Not all the features of atypical human operating systems are bugs. We owe many of the wonders of modern life to innovators who were brilliant in non-neurotypical ways. Herman Hollerith, who helped launch the age of computing by inventing a machine to tabulate and sort punch cards, once leaped out of a school window to escape his spelling lessons because he was dyslexic. So were Carver Mead, the father of very large scale integrated circuits, and William Dreyer, who designed one of the first protein sequencers.

Singer's subversive meme has also become the rallying cry of the first new civil rights movement to take off in the 21st century. Empowered by the Internet, autistic self-advocates, proud dyslexics, unapologetic Touretters, and others who think differently are raising the rainbow banner of neurodiversity to encourage society to appreciate and celebrate cognitive differences, while demanding reasonable accommodations in schools, housing, and the workplace.

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Neurodiversity Rewires Conventional Thinking About Brains

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For Wired's 20th anniversary, Steve Silberman chronicles the birth of neurodiversity -- a neologism that called attention to the fact that many atypical forms of brain wiring also convey unusual skills and aptitudes.

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Great minds think differently - supporting neurodiversity benefits scientific progress

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Great minds think differently - supporting neurodiversity benefits scientific progress

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Academia needs to accept that not everyone's brain functions in the same way.

Most scissors are right-handed. Of course, that's not to say left-handed people can't use them-but the handles are designed to be most comfortable when held in the right hand. For precision and ease, someone who prefers to use their left hand might want to buy a pair of scissors designed for them.

The differences between right and left-handed people are small-a handful, if you'll excuse the pun, of genes -but from driving to writing, people are most successful when allowed to use tools specifically designed for them. Though being left-handed is less common, in some cases, this divergence from the "norm" can actually be an asset; left-handed baseball pitchers and pitch hitters are prized for their unpredictable patterns of play.

Unlike baseball players, scientists aren't defined by our dominant hands. We are free to hold our forceps in whichever hand is most deft at finely controlling the points. But we are defined by how we think, and how our minds work to solve problems.

Many researchers' brains function differently from what society considers to be normal, complicating their work in environments designed for another type of thought process.

Many researchers' brains function differently from what society considers to be normal, complicating their work in environments designed for another type of thought process. Like baseball players, however, these differences may also be a boon, providing new ways to approach and answer science's diverse questions.

Although technically classified as mental disorders, depression and autism spectrum disorders affect 7.6 percent and around one percent of adults, respectively. Both brain disorders are known to affect a person's concentration and abilities to solve problems. A scientist's ability to work in groups or under pressure diminishes if these effects are not understood or accounted for.

There are significant advantages to be gained from supporting scientists with differing thought processes and less common mindsets.

Here are two first-person accounts on the difficulties of conducting scientific research while living with depression or autism spectrum disorder. There are significant advantages to be gained from supporting scientists with differing thought processes and less common mindsets.

Grad School Is Actually A Great Place To Build Resilience

By Susanna Harris

Some days, I'd literally lay on the couch all day unable to move. But I thought I was "too smart" for my brain to be sick.

I fought my symptoms of mental illness for a long time: I felt hopeless, had difficulty sleeping, fluctuations in appetite, low self-worth, short bursts of happiness and productivity followed by long periods of low energy. Some days, I'd literally lay on the couch all day unable to move. But I thought I was "too smart" for my brain to be sick.

Susanna Harris

Though major depression, anxiety, and substance abuse twist all the way up through my family tree, it wasn't until a particularly long and dark period of depression almost took my life that I finally accepted I needed to face these problems myself.

Not to minimize the astounding challenges and fears of catastrophic dips in mental health, but there are some silver linings of living with mental illnesses.

That was two years ago, and since then I've not only focused on my own well-being, but also worked to support family going through similar issues. It's scary to watch those you love struggle, but though difficult, seeing others wrestle with these disorders helped me acknowledge my own. I became more open about my symptoms, and learned what kinds of healthy coping mechanisms can get me through difficult times, without sinking further into destructive tendencies-something which has been invaluable during my second half of grad school.

Not to minimize the astounding challenges and fears of catastrophic dips in mental health, but there are some silver linings of living with mental illnesses.

Susanna Harris

I always have a therapist. Even when everything is smooth sailing, I know I have someone to hold me accountable if anything changes for the worse. I've also worked hard to build a strong support network-which was invaluable in recovering from my mental health crisis. This isn't something we're normally pushed to create, even though mental health struggles-in and out of grad school-happen. All. The. Time.

Living with anxiety has made me learn to appreciate procrastination and obsession as a benefit (at times) to overall creativity when writing or working on experiments. It has also taught me to seek out people to hold me accountable to a deadline, forcing me to submit things before I feel that they are perfect.

I have an increased sensitivity to when others are struggling; maybe this is from my own experiences, or maybe it's from growing up around people with these kinds of disorders. Either way, identifying signs of imbalance has allowed me to provide support.

Maintaining healthy habits, like sleeping well, eating well, exercising, and being mindful help me stay on the up-and-up. These will also lead to a longer, healthier life.

Building The PhDepression LLC has connected me with people around the world. I've gained friends and professional connections-many of whom have helped my mental health, but also in the development of my scientific projects!

But stressful and unexpected times will continue throughout life; grad school is actually a great place to build resilience and learn ways to keep moving forward.

Rather than seeing my depression and anxiety as a weakness to overcome or "cure," I see it as an invisible challenge. Like wearing a resistance band while lifting weights, I have to account for the differences in difficulty as I take on responsibilities. Like with lifting weights, if done consciously and carefully, this extra work will pay off. The people I've met during my PhD training have become like family, and they understand the challenges grad students face and the stresses research brings-any experiment could be the make or break part of a project, defining the trajectory of our work for months or years. But stressful and unexpected times will continue throughout life; grad school is actually a great place to build resilience and learn ways to keep moving forward.

For more on plant microbiomes and being a grad student with depression and anxiety, follow Harris on Twitter at @SusannaLHarris.

I Want Spaces Where We Can Jump And Shout For Joy

By Juan Pablo Ruiz

I want to build spaces where we can jump and shout for joy uninhibited, and receive the accommodations we need to thrive.

There's no prescription for normalcy-even the definition of "normal" is largely dependent on context. As a kid, I learned that the only way I could pass for normal was to actively and constantly consider my surroundings and, like a chameleon, try to fit into whatever social group or situation I found myself thrown into. Quirks that couldn't be hidden were excused as the stereotypical eccentricities caused by a high IQ and eidetic memory.

Juan Pablo Ruiz

These traits bore me through my undergraduate degree without needing to study-meaning I spent a lot of time with my cells in the lab, or writing fantasy stories alone in my room. But in academia, particularly in STEM fields, there's a certain amount of cultural acceptance and sometimes even a veneration of the caricatured male autistic: Someone who's socially awkward, reserved, unemotionally "objective," and obsessed with his work. The problem with this-as with all stereotypes-is that it fails to capture the true diversity of autistics, perpetuating harmful stereotypes.

I, like many autistics, joined science academia in the hopes that my diverse brain, problem-solving skills, and ability to passionately spend long hours thinking about my interests would translate into success and acceptance, where it hadn't before.

In fact, while people can see autistics as uncaring or unaware of social rules and interactions, because of past mistakes I am hyper-aware of everything I say and do in front of others, unless I am with close friends. When I blunder-which I do plenty-I wallow in shame when others would simply shrug it off. Or take my hyper-empathy and hyper-emotionality, which are quite different from autistic stereotypes. I will legitimately scream in excitement from quite standard experimental results. I can also become incredibly overwhelmed when witnessing a conflict, even if I'm not directly involved.

This leads to levels of social anxiety at conferences and other work events that before my diagnosis I handled with either copious amounts of alcohol or many naps. Sometimes, it was both: It's much more socially acceptable to need naps for being hungover than for being socially exhausted and sensorially overwhelmed. With strangers and even acquaintances, unless I'm talking about my data (or another topic of interest), I will inevitably struggle with the interaction

Juan Pablo Ruiz

I, like many autistics, joined science academia in the hopes that my diverse brain, problem-solving skills, and ability to passionately spend long hours thinking about my interests would translate into success and acceptance, where it hadn't before. Unfortunately, many of us learn too late that in science as much as in politics, selling yourself and your work, as well as building social networks, are crucial skills. We join science to avoid politics, only to find ourselves deep in such maneuverings. (That is, unless we choose to become lab tech or staff, career choices which can be looked down upon.)

As a former stem cell researcher, current education researcher, and now a member of the Future of Research board of directors, I interact with plenty of people who have not yet publicly disclosed their neurodivergence. I have had the pleasure of both mentoring and being mentored by many neurodiverse scientists-some of whom were as different from me as I am from a neurotypical. But I have had the privilege to pass as neurotypical in a space that snubs difference. Others don't.

I want truly inclusive spaces, and a culture where everyone is welcomed and nurtured to grow-especially those who cannot pass, and who have been told, from the beginning, that their brain is broken and set up for failure.

I neither need nor want accommodations designed to make it easier for me to assimilate-making neurotypical people more comfortable-while actively excluding those who can't. I want truly inclusive spaces, and a culture where everyone is welcomed and nurtured to grow-especially those who cannot pass, and who have been told, from the beginning, that their brain is broken and set up for failure. I want to build spaces where we can jump and shout for joy uninhibited, and receive the accommodations we need to thrive. Because just as with normalcy, there is no prescription for success that doesn't depend on context.

We need to be able to use our pipettes in whatever hand provides the most dexterity. We must work at a bench that allows us to turn right or left, depending on how we move comfortably and produce our best work. And just the same, we need to work in a space that provides ample resources to support unique thought processes and needs.

Without glorifying mental health struggles, we need to appreciate the diversity of perspectives brought by scientists who all think differently-and who can assess the world from exclusive viewpoints.

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Great minds think differently - supporting neurodiversity benefits scientific progress

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Academia needs to accept that not everyone's brain functions in the same way. Most scissors are right-handed. Of course, that's not to say left-handed people can't use them-but the handles are designed to be most comfortable when held in the right hand.

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Neurodiversity is a relatively new term, increasingly used in talent strategy, referring to people with dyslexia, dyspraxia, autism and other neurological conditions. Still poorly understood, it was the theme of a recent roundtable for senior talent-acquisition and recruitment specialists in the world of banking.

Participants included special guest Ray Coyle, UK chief executive of Auticon, a unique, multinational IT consultancy and social enterprise, which exclusively employs adults with autism as IT consultants. He stressed that the UK faces a shortage of STEM skills in fast-growing areas such as data analytics, artificial intelligence (AI) and machine learning. Meanwhile, only 16% of the 700,000 people diagnosed with autism are in fulltime employment, despite many having talents vital to the STEM industry.

Autism, Coyle explained, is a life-long developmental condition for which there is no cure. The neurons in an autistic brain are visibly different. However, staff at Auticon resist the condition being framed as a disability. Many people with autism are exceptionally proficient in specific skills but below average in others.

Through work with the University of Berlin, Coyle learned that people with autism are often better at pattern recognition, attention to detail, sustained concentration and logical analysis than the general population - an understanding that inspired Auticon's launch.

"It's about getting everybody to do what they do best," said Coyle. "People with autism will not be led by assumptions in the same way as neurotypical people are." To recruit neurodivergent people, Coyle advises employers to start by identifying and publicising the positives of their business for this demographic. Applicants will be more likely to disclose their neurodiversity if they understand that their skills are welcomed - a crucial step if businesses are to make adjustments to their recruitment process.

"When people diagnosed with neurological conditions are applying to big, scary banks, there's a temptation to keep their diagnosis to themselves," he explained.

He added that "an employer should tell an autistic applicant what changes would be made to the recruitment process to accommodate his or her requirements.

"Just saying 'our doors are open, come on in' isn't going to be enough. It's multifaceted and more complex than that."
Unfair disadvantage
The phrasing of job advertisements often deters neurodiverse people from applying. For example, someone with autism, being very literal, might not apply for a role simply because it specifies two years of Java experience, when they only have 23 months' worth of experience.

Chairman of Auticon's advisory board, Sir David Walker, added that interviews pose similar obstacles, since massaging the truth to impress an interviewer isn't something that comes naturally to many neurodiverse people. If the role in question is never going to require this sort of skill, the process seems unnecessary and unfair.

Asked whether any companies have made progress in this area, Coyle explained that one company he works with removes details such as an applicant's university from CVs, and has their interview answers evaluated by people who weren't present in the interview room.

Meanwhile, Government Communications Headquarters (GCHQ) employs around 300 people with autism because it needs staff with sustained concentration to work on large, unstructured data sets. When looking for Oxford and Cambridge graduates to employ, it advertised for applicants with "the Turing factor: brilliant and unemployable".
Progression and promotion
If finding a suitable job can prove challenging for those who are neurodivergent, career progression can be just as difficult. In many companies, salary increases come with moving into management roles. However, managing people isn't necessarily something that people with autism are comfortable doing.

In workplaces that make no adjustments for neurodiversity, progression can be all-but-impossible for staff with autism, Coyle stressed. For example, in the UK, anyone applying to work at a bank must be checked by the Disbarring and Disclosure Service (DBS), which prevents unsuitable people from working with vulnerable groups. But you cannot pass if you have been homeless at any point. This is something that applies to a significant minority of Auticon's consultants. "It's outrageous," he said. "But it's not even visible because the path from homelessness to banking is not a well-trodden one."

One crucial element of Auticon's work is negotiating workplace adjustments for each of their consultants when they go out to clients' offices. This involves considering the physical and communications environment from the specific individual's perspective. "You can't make an office 'autismfriendly'", pointed out Coyle. "You need the individual involved to tell you what adjustments they need."

In this regard, neurodiversity could act as a lever for positive change. For instance, people with autism struggle with lazy, vague or unclear communication. Line managers who reduce the ambiguity in their communication with autistic people could become better at communicating with everyone, as a result.

Employing interns with autism at Credit Suisse prompted staff to think about their own communication skills, attested the firm's global head of recruitment Annabel Morris.
Changing perceptions
While much of the roundtable was focused on autism, David Mason, head of talent acquisition at Santander, highlighted the prevalence of dyslexia in the workforce, another example of neurodivergence.

He argued that modern businesses will need to embrace neuro and cognitive diversity of all kinds in order to succeed in the modern marketplace. There is a commercial risk in trying to hunt down the metaphorical unicorn - a perfect, probably mythical candidate. Coyle agreed, warning that when hiring managers cannot source 'unicorns', they tend to employ candidates in their own likeness, entrenching the impression that everyone looks and thinks the same.

Walker admitted that Auticon's work can only "chip away" at attitudes. In order to change perceptions, the company requires high-level sponsors, while to make a real difference, more companies must embrace (and be seen to embrace) a neurodiverse workforce.

Coyle believes that such change will prove good for business, beneficial to society and positive for individuals, though he acknowledged the need to "be reasonable in the scale of our ambition. We're not going to get from 16% to 78% in employment in a short period of time," he admitted.

The ultimate aspiration is for businesses to wake up and recognise the value of a neurodiverse workforce and the individuals that contribute their unique perspectives.

While people with autism are thought to struggle with empathy, Coyle considers this a two-way street: autistic people struggle to empathise with neurotypical people, but the reverse is also true. "Each side has a problem with empathy," he concluded.

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Neurodiversity in the workplace | Changeboard

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Neurodiversity is a relatively new term, increasingly used in talent strategy, referring to people with dyslexia, dyspraxia, autism and other neurological conditions. Still poorly understood, it was the theme of a recent roundtable for senior talent-acquisition and recruitment specialists in the world of banking.

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What is Neurodiversity? – Neurodiversity in a Nutshell

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What is Neurodiversity? – Neurodiversity in a Nutshell

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Transcription

Hi guys, NeuroRebel here ... and the wiener dog. (Yes, I love you. Can you be quiet while I talk in the video? Can you be a good boy?) Let's see if he'll be a good boy.

I was diagnosed autistic just before turning 30, and I went a good portion of my life not knowing - well, I knew ... I knew I was different, and I knew I experienced the world in a different way, but I just kind of thought I was a freak or a weirdo or nobody would get it.

Then, when I was diagnosed autistic, I realized oh my gosh, a lot of these experiences are very common for other autistic people, and there's something really comforting about that.

I should say that every autistic person is different and every autistic person's experience is very unique, but there are just some things that are very common or are almost nearly universal when you start to interact with other autistic people, and it has just been magical.

I make videos because I was diagnosed, and then when I went on the internet after I had been reading the words of autistic people and I googled autism, what I found was in contradiction to the voices of autistic people.

It was very gloom and doom and really terrible, and there were just so many myths, like autistic people don't have empathy and things like that ... just really terrible things. I didn't want to accept it because I knew it wasn't true, and so I started my blog to correct some of the misinformation and to share and teach about autism and neurodiversity. And I haven't talked about neurodiversity yet, so in this video I want to quickly explain what neurodiversity is.

In nature, there is diversity - biodiversity, diversity of species, diversity in the genetic gene pool - these things are generally thought of as good things and natural ... you know, diversity.

In business, even now, statistics and business owners are starting to realize that companies that have more diverse employees are more successful because it brings more types of ideas and thinking to the table.

Neurodiversity is brain diversity and thinking style diversity. This includes autism, ADHD, and some other things would be included in neurodiversity. It's not just autism; I want to make sure that is clear. It says these other types of thinking are also valid, and they are just natural shades in humanity. We should treat people who have different thinking styles with respect and help empower them to be the very best versions of themselves.

That's neurodiversity in a nutshell. Anyway guys, thank you so much for hanging out with me this week. I hope you enjoyed my quick, short, summarized autism video. If you enjoy them, please subscribe, and turn on the bell icon so you will be notified when the next one comes out. I will talk to you later. Bye!

If you like what I do, and would like more, please consider subscribing on Patreon. Transcriptions above paid for by the Patreon Subscribers. I truly appreciate you!

More on Neurodiversity:

Neurodiverisy in Recruiting & Neurodiversity in HR

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View all posts by Christa Holmans - Neurodivergent Rebel

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What is Neurodiversity? - Neurodiversity in a Nutshell

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Neurodiversity is brain diversity and thinking style diversity. It's not just autism; I want to make sure that is clear. We should treat people who have different thinking styles with respect and help empower them to be the very best versions of themselves.

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The term "neurodiversity" was coined in the late 1990s by Australian sociologist Judy Singer, who is autistic herself.

Singer, along with the American journalist Harvey Blume, recognised that what we call "diversity", i.e. the variety we observe and value around us, can also be applied to people whose brains are different. These variations include autism, ADHD, the various forms of 'dys' (-lexia, -praxia, -calculia etc.), learning disability and more.

"This gives a different perspective on autism "awareness" - is it enough, or should we be insisting on improving accessibility for autistic and other invisibly disabled people?"

We may not think about it too much but we use biological diversity, in the form of biometrics, every day. We are all physically unique. If you have a biometric passport or a phone which uses facial recognition to unlock it, those are the principles which apply. The police have used fingerprints for identification purposes for well over a century.

Singer realised that, just as we all have different bodies, voices, eyes, and even walks we all have different brains, too. We all have our own experiences, strengths, and weaknesses. As with physical differences, problems arise when our brains diverge too much from the neurotypical "norm".
The Social Model
The medical model of disability describes the disabled person as having some kind of deficit; the ultimate objective of the doctor is to remove or reduce that deficit and make the person as close to "normal" as possible.

Neurodiversity has its roots in the social model of disability, which considers disability to be a civil rights issue. The social model rejects the notion that an individual must be "normal" to enjoy the full range of human experience, arguing that an impairment should not constitute a barrier to inclusion or access.

Disability, then, stems largely from society's failure to accommodate varying needs. That does not mean that all impairments are caused by external factors nor that we should not try to address them using medical means if beneficial to the individual. Rather, it means that whilst the person is experiencing the impairment society needs to work to support and accommodate them.

An example of this in the context of a physical disability might be of a wheelchair user who is unable to climb stairs. The medical model would seek to cure whatever it was that prevented them from using the stairs. This may be of long-term benefit but doesn't necessarily help the person "in the now".

The social model accepts that they cannot use the stairs at this time and ensures that ramps, lifts etc. are available, which are of immediate benefit to the person and are useful for as long as they are required. Furthermore, these same accessibility accommodations, which are better described as rights, will not only be beneficial to every other person with mobility issues, but also non-disabled people using pushchairs, carrying suitcases etc. now and in the future.
Accessibility for Different Brains
Neurodiversity applies the same logic to people with different brains.

It is well known that autistic people, for example, are often disproportionately affected by their external sensory environments and can become overwhelmed to the point of meltdown. Anxiety is also a factor. However, because their difficulties are not easily recognised by most people (so-called "invisible disabilities"), their distress is frequently misunderstood and misinterpreted as "challenging behaviour".

Neurodiversity advocates would consider these to be accessibility issues. There has been much comment in the news recently about how children with special educational needs (a problematic term in itself - in what way are their needs "special"?) are far more likely to be permanently excluded from schools. Few mainstream commentators drew attention to the fact that this was an accessibility problem and that the rights of these children to an education were being violated.

This gives a different perspective on autism "awareness" - is it enough, or should we be insisting on improving accessibility for autistic and other invisibly disabled people?
A Different Kind of Spectrum
Most pro-neurodiversity people reject functioning labels (high or low) and the notion of a linear spectrum of autism (mild to severe). Many consider the autistic spectrum to resemble a continuous colour wheel:

This is an example of a non-linear spectrum. For autism, each colour would represent elements like external or internal sensory sensitivities, emotional sensitivities, receptive or expressive communication ability, and more.

This is in no way a denial of disability.

On the contrary, it is an understanding that different people need different types of support - and that mental health support and physical health support are equally important. It is an understanding that disability is not a competition and that society has a significant role to play in how 'disabling' an individual's impairments are.

It is an understanding that this terminology is not only outdated but also negates the complex interaction between a person's aptitudes, their challenges, their abilities, their disabilities, and their life experience.

It is an understanding that if a person's needs are "invisible" that doesn't mean they aren't there. For example, autistic adults without a learning disability (so-called "high-functioning") are nine times more likely to die by suicide. There is nothing "mild" about those statistics. It is often pointed out that "high functioning" is used to deny services and that "low functioning" is used to deny agency.
"Neurominorities"
Ultimately, neurodiversity helps us to understand that everyone has different experiences based on how their brains work. "Neurodivergent" people (in the neurological minority) experience difficulties that "neurotypical" people (in the neurological majority) do not.

Any difference, whether it is in the brain or in the body, can result in disability, and it is important for all of us to recognise that improving accessibility and support for people with so-called invisible disabilities will create more acceptance.
Suzanne Comberousse is a freelance autism consultant and trainer.
Acknowledgements

Autistamatic, Breige Harvey, and Helen Rottier

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A Beginner's Guide to Neurodiversity | LDT

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The term "neurodiversity" was coined in the late 1990s by Australian sociologist Judy Singer, who is autistic herself. Singer, along with the American journalist Harvey Blume, recognised that what we call "diversity", i.e. the variety we observe and value around us, can also be applied to people whose brains are different.

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Autistic Community and the Neurodiversity Movement

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Autistic Community and the Neurodiversity Movement

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Autistic Community and the Neurodiversity Movement

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This open access book demonstrates the first historical overview of the autism rights branch of the neurodiversity movement, describing the activities and rationales of key leaders in their own words between 1992 and the present day since it organized into a unique community.

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This page was last updated in September 2013, and does not necessarily reflect my current work or the current state of affairs in the world.
On this page, you will find brief overviews of answers to many frequently asked questions about Autism to those who are new to the Autism/Autistic community, or who are interested in learning more about who we are. Here is a list of the questions. You may use CTRL+F or scroll down to find the one you would like to read. The last question gives a list of some print and online resources that may be of use to you. Inclusion of a site on that list does not imply endorsement, agreement, or support of any kind.

What is Autism?

What is the Autism Spectrum?

What is Asperger's Syndrome?

What are sensory issues?

Do Autistic people have empathy?

Who discovered Autism?

What causes Autism?

Is there a cure for Autism?

What treatments, therapies, or interventions are available for Autistic children and adults?

What services or accommodations do Autistic students often need or receive in schools?

What kind of employment opportunities do Autistic people have?

What kind of research is being done about Autism?

What organizations represent people interested in or connected to Autism?

Who comprises the "Autism" or "Autistic" communities?

Who are self-advocates?

How should I refer to people affected by Autism?

What about all this disagreement/arguing/vitriol/tension/hate I see online?

Why do you capitalize Autistic and sometimes capitalize Autism?

What is neurodiversity?

Are Autistic people more likely to be violent or commit violent crimes than non-Autistic people?

Where can I learn more?

1. What is Autism?
Autism is a neurological, pervasive developmental condition. It is a disability. It is usually considered a disorder. It is not a disease. It is a lifelong condition that spans from infancy to adulthood. Autistic people usually share a variety of characteristics, including significant differences in information processing, sensory processing, communication abilities or styles, social skills, and learning styles.

Some Autistic people are non-speaking (and may be called nonverbal). These people cannot use typical speech to communicate. They often use Adaptive and Augmentative Communication (AAC) devices, keyboards/typing, picture cards, whiteboards, or American Sign Language to communicate instead. Some Autistic people begin to develop normal speech in childhood and later regress and lose some or all speech. Other Autistic people develop limited speech. Still other Autistic people never develop speech at all. Other Autistic people are highly verbal and able to communicate using speech. Some Autistic people develop precocious vocabularies in early childhood.

Many Autistic people engage in self-stimulating behaviors called "stims" or "stimming." Stimming can take many forms. Stereotyped stims are hand or arm flapping and rocking, although stimming can also include pacing, other body movements, verbal stims (repeating certain phrases, humming, singing certain songs), or tactile stimming (rubbing a piece of cloth.) Stimming is a natural response to cope with overwhelming emotions, such as joy, anxiety, anger, or sadness. It is also a coping mechanism for sensory overload--more on that with question 4.

Autistic people tend to understand language literally and explicitly. Idioms are difficult for us to understand. We tend to be very truthful or honest, sometimes even to the point of extreme bluntness. For those of us who have high levels of verbal abilities, the social or pragmatic aspect of language is extremely difficult for us to learn -- and it has to be taught. It is not intuitive, automatic, or natural for us. We find it an entire foreign culture. We can easily come across as arrogant, rude, self-centered, or mean, and will rarely be aware of this unless informed directly. Autistic people have great difficulties with nonverbal communication such as facial expressions and body language, and have trouble understanding social subtleties and subtext.

Autistic people also rely heavily on routine, sameness, or being able to expect something to be or occur a certain way. When a routine is altered or disrupted, an Autistic person may have a meltdown, experience severe anxiety, and will have extreme difficulty adapting to the change.

Some Autistic people are able to live independently, complete post-secondary education (such as university or technical training), and obtain and keep meaningful, competitive employment. Other Autistic people can only do these things with supported employment or living services, or extensive supports in the educational setting. Still other Autistic people may need to live in a group home setting or with a family member or full-time caregiver for the rest of their lives. Many Autistic adults are underemployed or unemployed because they do not have access to appropriate and necessary supported employment services.

Some Autistic people also have co-occurring conditions of mental illness (such as bipolar disorder), behavioral or mood disorder (such as clinical depression or Tourette's Syndrome), learning disability (such as dyscalcula), or intellectual disability (formerly called mental retardation.) Many Autistic people also have conditions like Executive Function Disorder, Sensory Processing Disorder (formerly called Sensory Integration Disorder), prosopagnosia (face blindness), dyspraxia, synesthesia, anxiety disorders, and learning disabilities.

Some Autistic people are misdiagnosed or given simultaneous diagnoses with various conditions like Attention Deficit Disorder (ADD), Attention Deficit Disorder with Hyperactivity (ADHD), Post-Traumatic Stress Disorder (PTSD), or intellectual disability.

The most important thing to remember about Autism is that each individual is truly an individual. No two Autistic people are alike. At best, we share many similar characters, but we have our own personalities, interests, wishes, hopes, dreams, and fears. We also have different neurological and psychological profiles.

2. What is the Autism Spectrum?

The Autism Spectrum, or Autistic Spectrum, is an informal name used both by clinicians and laypeople to describe the variation in phenotype of Autistic children and adults. It is also used to refer to a set of distinct diagnoses used by clinicians that are considered part of the larger Autism umbrella. Some people dislike this terminology and feel that Autism is not a sliding scale or gradient; other people dislike this terminology because they do not consider most highly verbal Autistics to be truly Autistic. Autism Spectrum Disorder is often abbreviated to ASD.

The American Psychological Association (APA) publishes a Diagnostical and Statistical Manual. The current DSM is the DSM-IV, published in 1994. It considers three conditions to be "Autism Spectrum Disorders." Those conditions are Autistic disorder (also called Kanner's Autism or Classic Autism), Asperger disorder (also called Asperger's Syndrome), and Pervasive Developmental Disorder Not-Otherwise-Specified (PDD-NOS).

Many people consider Rett's Syndrome, Childhood Disintegrative Disorder, and Nonverbal Learning Disorder to be Autism Spectrum Disorders or related to Autism.

Some people use terms like "high functioning autism" and "low functioning autism" to differentiate between Autistic people who have higher speaking abilities and Autistic people who have lower speaking abilities; however, some people object to the use of these terms as demeaning and offensive. Others insist that these terms are necessary to understand the full breadth of the spectrum.

Asperger's Syndrome is one of the three Autism Spectrum Disorders identified in the DSM-IV. It is also called Asperger Disorder or Asperger's Disorder. (Often, people misspell it Aspberger, Aspburger, or Asberger.) Asperger Disorder was added to the DSM-IV in 1994. The only difference in diagnostic criteria between Asperger's and Autistic Disorder is "no clinically significant delay in development of language." This has usually been understood to mean that people who begin to use speech by a normal age would be diagnosed with Asperger's, whereas people who do not use speech by a normal age would receive an Autistic disorder diagnosis.

In practice, the terms "high functioning autism" and "Asperger's" are used interchangeably, and many people receive both labels. Some people take issue with this distinction, and claim that there is no true validity behind it. They point to the extreme delay in acquisition of social or pragmatic use of language in people with Asperger's as a clinically significant delay in language, thus invalidating the criteria of "no clinically significant delay in language."

In the DSM-5 (the APA changed from Roman numerals to Arabic ones), to be released in 2013 (if I'm not mistaken), the separate three diagnoses of Autistic disorder, Asperger disorder, and PDD-NOS will be removed and replaced with the single diagnosis "Autism spectrum disorder." This proposed change has generated a lot of controversy. Some people are afraid that non-speaking Autistics with lower levels of adaptive functioning skills will be overlooked with the more inclusive criteria, whereas others are afraid that highly verbal Autistics who often have higher levels of adaptive functioning skills will be overlooked with the more inclusive criteria. Others support the change.

4. What are sensory issues?

Sensory issues are caused by Sensory Processing Disorder, formerly called Sensory Integration Disorder. Almost all Autistic people have varying degrees of sensory sensitivity. Sensory issues fall into two primary categories: hypersensitivity and hypo sensitivity. Hypersensitivity is when a person is extra-sensitive to certain stimuli; hyposensitivity is when a person seems to be much less affected by certain stimuli. SPD affects all five senses, and it affects everyone differently.

Most Autistic people have aversions to light touch, such as patting the back, stroking hair, or poking, and may reflexively lash out at someone or something making such contact. Many Autistic people have light sensitivity -- to the humming or flickering of fluorescent lights, or to too dim or too bright lighting. Other Autistic people have severe olfactory sensitivity -- and will not eat certain foods or will develop headaches or other problems around certain smells, like cleaning products, wipes, or perfumes.

Too much sensory overstimulation can lead to sensory overload -- a debilitating state in which the affected person is unable to process or respond to any sensory stimuli, including social interaction. I always compare sensory overload to having the infamous "blue screen of death" that Windows PCs get but in my brain--my neurological functions. It is a very painful, inhibiting state. Sensory overload often happens at places like concerts, crowded social events (such as parties or dances), schools, hospitals, or police stations. These sensory issues can make it hard for Autistic children and adults to experience meaningful inclusion.

Some people are better at coping with sensory issues than others. Coping skills are learned, often by trial and error, and sometimes with familial or professional assistance. Many Autistics learn coping skills from one another.

5. Do Autistic people have empathy?

Yes, we do. There was a misconception perpetuated for several decades -- and still fueled by some people today -- that Autistic people are not capable of empathy or empathizing with other people. One of the most common characteristics of Autism is a deficit in the ability to understand nonverbal forms of communication -- including tone or pitch of voice, word choice (such as idioms, colloquialisms, and metaphors), facial expressions, body language, and other subtle communications. Because of that, most Autistic people have a hard time accurately expressing their own thoughts, feelings, or opinions using nonverbal forms of communication. We also have trouble identifying the emotions of others based on subtext or body language.

Therefore, while we have empathy (and a 2009 study showed that Autistic people not only have empathy, but in certain cases, had more empathy on average than non-Autistic people), we may not recognize when to express empathy for someone else, nor will we express it in a way that is expected in the rest of society.

Many Autistic people have a very strong sense of justice -- of right and wrong, and of fairness. Many Autistic people deeply experience sadness, tragedy, and anger at events recounted on the news -- famines, war, genocide, terrorist attacks, or other violent crimes.

6. Who discovered Autism?

American psychiatrist Leo Kanner published a paper called Autistic Disturbances of Affective Contact in 1943 in the English language. In 1944, Austrian pediatrician Hans Asperger published a paper called Die "Autistischen Psychopathen" im Kindesalter ( Autistic Psychopathy in Children) in 1944 in the German language. Kanner's research was widely recognized and dominated the field of autism, while Asperger's research, conducted under a Nazi-controlled government during World War II, would not be available in English until the 1980 translation by Lorna Wing.

Later researchers included Bruno Bettelheim, who supported the later disproven theory that mothers caused Autism when they did not love their children, and Bernard Rimland, who railed against Bettelheim and devoted his life to finding a cure for Autism. There was Ivar Lovaas, the clinical psychologist who advocated a behaviorist theory, that would later develop into Applied Behavioral Analysis (ABA), and Eric Schopler, the psychologist who developed the TEACCH program as an alternative to ABA. (More on those later, on question 9.)

7. What causes Autism?

No one knows with certainty the exact cause of Autism. The generally accepted theory is that the cause is complex genetic factors. Multiple studies on twins and families suggest that Autism is genetic, and that multiple genes and parts of several chromosomes are involved in producing phenotypic traits of Autism in an individual.

There are many less credible theories about environmental causes, such as the vaccine-causation hypothesis, which stems from a 1998 paper by Andrew Wakefield. He was a doctor before he was stripped of his license to practice for malpractice. Of the other twelve authors of his paper, eleven recanted their names from the paper claiming a link between the Measles/Mumps/Rubella (MMR) vaccine and Autism. The Lancet, the journal that originally published the paper, published an official retraction fairly recently -- either in late 2010 or early 2011. Other theories were that thimerosal or mercury in vaccines causes Autism. There is no scientifically valid evidence to support this theory.

8. Is there a cure for Autism?

No.

Some people, mostly the parents of Autistic people, advocate very strongly for a cure for Autism, although this also includes some Autistic people. Other people, mostly (but not entirely) Autistic people, advocate very strongly against a cure for Autism. Nevertheless, despite the merits and faults of both sides of this often heated debate, there is no currently known or available "cure" for Autism. People who claim to be able to "cure" Autism are frauds and quacks. Almost all of us, whether or not we want a cure, agree on that.

Some people do, however, claim that it is possible to "recover" from Autism; these people are usually professionals who work with Autistic children and adults. Other people prefer to discuss "passing," in which an Autistic person has learned how to appear more non-Autistic, thus "passing" for normal. The concept of "recovery" generates more controversy than the concept of "passing."

9. What treatments, therapies, or interventions are available for Autistic children and adults?

Oh boy. There is a long, long list of common treatments, therapies, and interventions people often seek or use. Here is a brief and certainly not exhaustive or complete listing:

Speech pathology/therapy

Occupational therapy

Physical therapy

Psychotherapy

Applied Behavioral Analysis

Floortime

Social skills classes

TEACCH

Gluten-free/Casein-free diet

Medications (usually for co-occurring conditions)

Mentoring

Daily Life therapy

10. What services or accommodations do Autistic students often need or receive in schools?
When drafting an Individualized Education Plan (IEP) or 504 plan, consider the student's sensory, social, and communication needs in addition to any specific learning disabilities (or giftedness!) that the student may have. Consider both strengths and weaknesses. Encourage and give concrete tools for developing the student's strengths, and mitigate and accommodate the disability wherever possible.

Allow for sensory breaks if necessary. Allow a student to walk around a room during a test or to stim during potentially stressful situations. Give visual aids, both for schedules and for assignments and class material. Establish and keep a strict routine. Give specific, explicit instructions for assignments both in-class and outside of class. Create measures to prevent and address bullying. Implement a strategy for meaningful inclusion and integration of the student with the mainstream.

11. What kind of employment opportunities do Autistic people have?

Commensurate with an individual's actual abilities and skills, it depends on the level of education the person has as well as the types of support needed during the hiring process or during employment, and whether those supports are available. If an individual receives effective job-coaching, interview coaching, and support in navigating the complex social barriers of "office politics," then he or she will probably do far better than an Autistic person who has not received these same supports.

There are a large number of Autistic people who have advanced degrees but who are unable to obtain or keep a job due to severe deficits in social and communication abilities, or, in some cases, discrimination by the employer on the basis of Autism-related difficulties. The majority of Autistic adults are unemployed for a myriad of reasons.

Autistic people do well when working in a field related to an interest of theirs, not required to participate in a lot of inter-personal interactions, and when given specific, explicit goals or instructions. Autistic people have worked in offices, as professors, in the information technology field, as artists, as teachers, as engineers, as lawyers, as authors, as nonprofit managers, as cashiers, as accountants, as linguists... and more.

12. What kind of research is being done about Autism?

There are three primary types of research: biomedical research into the causes and potential cure for autism, psychological research into the characteristics of Autistic people, and social research into social issues facing Autistic people in the real world, such as housing, education, employment, and inclusion. The vast majority of research falls into the first category, with a significant amount of research in the second category. Very little research is done from the third category. You can learn more from the Academic Autistic Spectrum Partnership In Research and Education, which is partnered with Autistic adults (most of whom are opposed to curing Autism), and the Autism Research Institute, which seeks to find a cure for Autism.

13. What organizations represent people interested in or connected to Autism?

See question 21, the last two bullet points, for a list with links.

14. Who comprises the "Autism" or "Autistic" communities?

The "Autism community" is usually understood to mean anyone affected by or having a professional interest in Autism. That usually means the parents of Autistic people (and other family members, like siblings, or spouses), lay advocates, special education attorneys, researchers, clinicians, policymakers, and Autistic people. Some people make a differentiation between "Autism community" to mean everyone other than Autistic people, and "Autistic community" to mean exclusively Autistic people. The default is to use "Autism community."

15. Who are self-advocates?

Self-advocates are typically Autistic youth and adults. Some self-advocates are non-speaking and use non-traditional methods to communicate; other self-advocates are highly verbal and articulate using typical speech. Some self-advocates have extensive supportive services, whereas others are nearly entirely self-sufficient. Self-advocates have received the gamut of possible diagnoses and other labels, including low-functioning, high-functioning, Autism, Asperger's, and intellectual disability/mental retardation.

16. How should I refer to people affected by Autism?

Depends on whom you ask! Some of us prefer the terminology Autistic person or Autistic, whereas other people prefer to say person with autism. Still others use the more neutral person on the autism spectrum. The philosophies and beliefs behind the arguments for these terms center around the social and attitudinal implications of the language. People who prefer Autistic tend to see Autism as an important and defining aspect of the person's identity, whereas people who prefer person with autism tend to see autism as something that should be mitigated as much as possible and that does not impact the person's identity on that fundamental level.

The most neutral way to refer to people is to say "on the autism spectrum" or "on the spectrum." This avoids a potential inflammatory response.

17. What about all this disagreement/arguing/vitriol/tension/hate I see online?

Unfortunately, there is a lot of vitriol among the members of the Autism community. The "battle lines" usually center along the following debates or controversies:

Those who support a cure for Autism, and those who oppose a cure for Autism

Those who believe vaccines cause Autism, and those who believe vaccines do not cause Autism

Those who support the work of self-advocates to represent Autistics, and those who believe that parents are the only ones who can speak for their Autistic children

Many (but not all) parents of Autistic children (usually non-speaking), and many (but not all) self-advocates

Those who support the use of shock aversives, and those who do not

Those who believe an individual can "recover" from Autism, and those who do not

Those who prefer "evidenced-based" interventions or therapies, and those who prefer non-traditional treatments

These disagreements, which are always personal and deeply emotional for all involved, often result in fighting, nasty exchanges of insults, and hurt feelings on internet forums, blogs, and social networking sites, as well as occasionally in person. No one "side" is entirely culpable for all of the hatred. I have seen other Autistics spew hatred as often as I have seen the parents of Autistic children spew hatred (which is, sadly, a lot.) It is very easy for those of us in the Autism community to be upset, personally offended, and enraged enough to want to go on a personal rampage against the other person.
18. Why do you capitalize Autistic and sometimes capitalize Autism?

I capitalize the word "Autistic" as if it were a proper adjective, for the same reason the Deaf and Blind communities capitalize the respective adjectives "Deaf" and "Blind." We do it for the same reason Black people often capitalize that word. We capitalize it as a proper adjective or noun to represent our community and our identity.

I am inconsistent about capitalizing Autism, and do it on occasion, such as on this page.

Neurodiversity is the idea that certain conditions, including Autism, are natural variations of the human genome, and are not defects that need to be fixed. Neurodiversity says that the ability of an individual should be augmented and supported, and the disability should be mitigated and accommodated. It says that the value or worth of the individual is not less because of Autism, and that Autism is an important and valuable aspect of a person's identity.

Historically speaking, neurodiversity is an extension of the Disability Rights Movement of the 1970s, which advocates the civil rights model of disability -- that the primary and most significant challenges for Autistic or other disabled people are mostly societal problems such as non-inclusion, discrimination, or ableism.

20. Are Autistic people more likely to be violent or commit violent crimes than non-Autistic people?

No. In fact, a recent study showed that not only are Autistic people not more likely to commit a violent crime than non-Autistic people, but that the rate of violence among Autistics is lower than in the general population. Autistic people are also far more likely to be the victims of crime than the perpetrators.

21. Where can I learn more?

To learn more about the history of Autism research, read A History of Autism: Conversations with the Pioneers by Adam Feinstein.

To learn more about the massive increase in Autism diagnoses in recent years, read anthropologist Roy Richard Grinker's Unstrange Minds: Remapping the World of Autism.

To learn more about the vaccine controversy and autism research, read Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure by Paul A. Offit.

To learn more about twice-exceptionals (dually gifted and disabled people), including Autistic twice-exceptionals, read Different Minds by Deirdre V. Lovecky.

To learn more about Asperger's Syndrome, read The Complete Guide to Asperger's Syndrome by Tony Attwood.

To learn more about concerns about Autistic people and law enforcement, read Autism, Advocates and Law Enforcement Professionals: Recognizing and Reducing Risk Situations for People with Autism Spectrum Disorders by former police officer Dennis Debbaudt.

To learn more about relationships and Autistic people, read Against the Odds: A Love Story and Autism, Asperger's, and Sexuality: Puberty and Beyond by Jerry and Mary Newport, two Autistics who married each other; Autism Aspergers: Solving the Relationship Puzzle--A New Developmental Program that Opens the Door to Lifelong Social and Emotional Growth by Steven E. Gutstein; and Strategies for Building Successful Relationships with People on the Autism Spectrum: Let's Relate! by Brian R. King.

To learn more about Autistic girls and women, read Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-Teen and Teenage Years by Shana Nichols, Gina Marie Moravcik, and Samara Pulver Tetenbaum, and Aspergirls by Rudy Simone.

To learn more about bullying, read Perfect Targets: Asperger Syndrome and Bullying--Practical Solutions for Surviving the Social World by Rebekah Heinrichs, Asperger Syndrome and Bullying: Strategies and Solutions by Nick Dubin and Michael John Carle, and Exploring Bullying with Adults with Autism and Asperger Syndrome: A Photocopiable Workbook by Anna Tickle and Bettina Stott.

To learn more about Autistic people, read the memoirs of Temple Grandin, Daniel Tammet, Donna Williams, or Liane Holiday-Willey. You can also see a list of and links to blogs by Autistic people on the left-hand side of Autistic Hoya.

To learn more about self-advocacy, read Ask and Tell edited by Autistic special education professor Stephen Mark Shore.

To learn more about employment options and strategies, read Employment for Individuals with Asperger Syndrome or Non-Verbal Learning Disability: Stories and Strategies by Yvona Fast.

To learn more about college options and strategies, read Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults, Students with Asperger Syndrome: A Guide for College Personnel by Lorraine E. Wolf, Ph.D., Jane Thierfeld Brown and Ed.D., Top Tips for Asperger Students: How to Get the Most Out of University and College by Rosemary Martin, Students with High-functioning Autism Going to College: A Guide for Parents by Jane Thierfeld Brown, Lorraine Wolf, Lisa King and Ruth Bork, and Realizing the College Dream With Autism or Asperger Syndrome: A Parent's Guide to Student Success by Ann Palmer.

To read about organizations run by Autistic people, see the Autistic Self-Advocacy Network (ASAN), the Autism Women's Network (AWN), and the Autism Network International (ANI).

To read about organizations run by partnership of Autistic people and families and professionals that promote civil rights, see the Autism National Committee (AutCom) and, for a cross-disability organization, TASH.

To read about organizations run primarily by families and professionals or sponsored by the government, see the Autism Society of America (ASA), the Inter-Agency Autism Coordinating Committee (IACC), Autism Speaks (which I do not recommend to anyone), the Autism National Information and Resource Center (Autism NOW Center), and the Asperger's Association of New England (AANE).

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This page was last updated in September 2013, and does not necessarily reflect my current work or the current state of affairs in the world. On this page, you will find brief overviews of answers to many frequently asked questions about Autism to those who are new to the Autism/Autistic community, or who are interested in learning more about who we are.

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Neurodiversity: Some Basic Terms & Definitions

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Neurodiversity: Some Basic Terms & Definitions

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What It Means:
Neurodiversity is the diversity of human brains and minds - the infinite variation in neurocognitive functioning within our species.
What It Doesn't Mean:
Neurodiversity is a biological fact. It's not a perspective, an approach, a belief, a political position, or a paradigm. That's the neurodiversity paradigm (see below), not neurodiversity itself.

Neurodiversity is not a political or social activist movement. That's the Neurodiversity Movement (see below), not neurodiversity itself.

Neurodiversity is not a trait that any individual possesses. Diversity is a trait possessed by a group, not an individual. When an individual diverges from the dominant societal standards of "normal" neurocognitive functioning, they don't "have neurodiversity," they're neurodivergent (see below).
Example of Correct Usage: "Our school offers multiple learning strategies to accommodate the neurodiversity of our student body." Examples of Incorrect Usage:
"Neurodiversity claims that..."
This writer is actually trying to talk about either the neurodiversity paradigm or the Neurodiversity Movement. Neurodiversity, as a biological characteristic of the species, can't "claim" anything, any more than variations in human skin pigmentation can "claim" something.

"Neurodiversity is a load of nonsense."
Really? So human brains and minds don't differ from one another? There's an awful lot of scientific evidence that shows quite plainly that there's considerable variation among human brains. And if we all thought alike, the world would be a very different place indeed. The person who wrote this sentence was probably trying to object to the neurodiversity paradigmand/or the positions of the Neurodiversity Movement, and has ended up sounding rather silly as a result of failing to distinguish between these things and the phenomenon of neurodiversity itself.

"My neurodiversity makes it hard for me to cope with school."
The correct word here would be neurodivergence, rather than neurodiversity. Groups are diverse; individuals diverge.

NEURODIVERSITY PARADIGM
What It Means:
The neurodiversity paradigm is a specific perspective on neurodiversity - a perspective or approach that boils down to these fundamental principles:

1.) Neurodiversity is a natural and valuable form of human diversity.

2.) The idea that there is one "normal" or "healthy" type of brain or mind, or one "right" style of neurocognitive functioning, is a culturally constructed fiction, no more valid (and no more conducive to a healthy society or to the overall well-being of humanity) than the idea that there is one "normal" or "right" ethnicity, gender, or culture.

3.) The social dynamics that manifest in regard to neurodiversity are similar to the social dynamics that manifest in regard to other forms of human diversity (e.g., diversity of ethnicity, gender, or culture). These dynamics include the dynamics of social power inequalities, and also the dynamics by which diversity, when embraced, acts as a source of creative potential.
What It Doesn't Mean:
The neurodiversity paradigm provides a philosophical foundation for the activism of the Neurodiversity Movement, but the two aren't the same. For instance, there are people working on developing inclusive education strategies based on the neurodiversity paradigm, who don't identify as social justice activists or as part of the Neurodiversity Movement.
Example of Correct Usage: "Those who have embraced the neurodiversity paradigm, and who truly understand it, do not use pathologizing terms like 'disorder' to describe minority neurological variants like autism."
NEURODIVERSITY MOVEMENT
What It Means:
The Neurodiversity Movement is a social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent.
What It Doesn't Mean:
The Neurodiversity Movement is not a single group or organization, is not run by any single group or organization, and has no leader. Like most civil rights movements, the Neurodiversity Movement is made up of a great many individuals, some of them organized into groups of one sort or another. These individuals and groups are quite diverse in their viewpoints, goals, concerns, political positions, affiliations, methods of activism, and interpretations of the neurodiversity paradigm.

The Neurodiversity Movement began within the Autism Rights Movement, and there is still a great deal of overlap between the two movements. But the Neurodiversity Movement and the Autism Rights Movement are not one and the same. The most significant distinction between the two is that the Neurodiversity Movement seeks to be inclusive of all neurominorities, not just Autistics. Also, there some who advocate for the rights of Autistics but who cannot rightly be considered part of the Neurodiversity Movement because they still consider autism to be a medical pathology or "disorder," a view at odds with the neurodiversity paradigm.

NEURODIVERGENT or ND (and NEURODIVERGENCE)
What It Means:
Neurodivergent, sometimes abbreviated as ND, means having a brain that functions in ways that diverge significantly from the dominant societal standards of "normal."

Neurodivergent is quite a broad term. Neurodivergence (the state of being neurodivergent) can be largely or entirely genetic and innate, or it can be largely or entirely produced by brain-altering experience, or some combination of the two (autism and dyslexia are examples of innate forms of neurodivergence, while alterations in brain functioning caused by such things as trauma, long-term meditation practice, or heavy usage of psychedelic drugs are examples of forms of neurodivergence produced through experience).

A person whose neurocognitive functioning diverges from dominant societal norms in multiple ways - for instance, a person who is Autistic, dyslexic, and epileptic - can be described as multiply neurodivergent.

Some forms of innate or largely innate neurodivergence, like autism, are intrinsic and pervasive factors in an individual's psyche, personality, and fundamental way of relating to the world. The neurodiversity paradigm rejects the pathologizing of such forms of neurodivergence, and the Neurodiversity Movement opposes attempts to get rid of them.

Other forms of neurodivergence, like epilepsy or the effects of traumatic brain injuries, could be removed from an individual without erasing fundamental aspects of the individual's selfhood, and in many cases the individual would be happy to be rid of such forms of neurodivergence. The neurodiversity paradigm does not reject the pathologizing of these forms of neurodivergence, and the Neurodiversity Movement does not object to consensual attempts to cure them (but still most definitely objects to discrimination against people who have them).

Thus, neurodivergence is not intrinsically positive or negative, desirable or undesirable - it all depends on what sort of neurodivergence one is talking about.

The terms neurodivergent and neurodivergence were coined by Kassiane Asasumasu, a multiply neurodivergent neurodiversity activist.
Examples of Correct Usage: "Our school aims to be inclusive of students who are Autistic, dyslexic, or otherwise neurodivergent, though there are some types of neurodivergence that we're still seeking ways to accommodate." "This Facebook group is for people who identify as both queer and ND (neurodivergent)."
NEUROTYPICAL or NT
What It Means:
Neurotypical, often abbreviated as NT, means having a style of neurocognitive functioning that falls within the dominant societal standards of "normal."

Neurotypical can be used as either an adjective ("He's neurotypical") or a noun ("He's a neurotypical").

Neurotypical is the opposite of neurodivergent. Neurotypicality is the condition from which neurodivergent people diverge. Neurotypical bears the same sort of relationship to neurodivergent that straight bears to queer.
What It Doesn't Mean:
Neurotypical is not synonymous with non-autistic.

Neurotypical is the opposite of neurodivergent, not the opposite of autistic. Autism is only one of many forms of neurodivergence, so there are many, many people who are neither neurotypical nor autistic. Using neurotypical to mean non-autistic is like using "white" to mean "not black."

Also, neurotypical is not a derogatory word, and has no intrinsic negative connotation. Of course, sometimes people use the word in the context of criticizing the behavior of neurotypicals, but that doesn't make it an intrinsically negative word. A lot of people criticize the behavior of men, too, but that doesn't make "man" an intrinsically derogatory word.
Examples of Correct Usage: "If the primary language of the society in which you were born is well-suited to the purpose of describing your sensory experiences, your needs, and your thought processes, you may have neurotypical privilege." "My sister is NT, but after growing up with an Autistic father and brother, she's quite at ease with other people's neurodivergence." Example of Incorrect Usage:
"Is your daughter Autistic or neurotypical?"
This isn't a well-worded question because there are other possibilities. The daughter in question might be non-autistic, but might also not qualify as neurotypical - she might, for instance, be dyslexic or have Down Syndrome.

NEUROMINORITY
What It Means:
A neurominority is a population of neurodivergent people about whom all of the following are true:

1.) They all share a similar form of neurodivergence.

2.) The form of neurodivergence they share is one of those forms that is largely innate and that is inseparable from who they are, constituting an intrinsic and pervasive factor in their psyches, personalities, and fundamental ways of relating to the world.

3.) The form of neurodivergence they share is one to which the neurotypical majority tends to respond with some degree of prejudice, misunderstanding, discrimination, and/or oppression (often facilitated by classifying that form of neurodivergence as a medical pathology).

Some examples of neurominority groups include Autistic, bipolar, dyslexic, and schizophrenic people.

The word neurominority can function as either a noun ("Autistics are a neurominority") or an adjective ("Autistics are a neurominority group").

NEURODIVERSE
What It Means:
A group of people is neurodiverse if one or more members of the group differ substantially from other members, in terms of their neurocognitive functioning.

Or, to phrase it another way, a neurodiverse group is a group in which multiple neurocognitive styles are represented.

Thus, a family, the faculty or student body of a school, the population of a town, or the cast of characters of a TV show would be neurodiverse if some members had different neurocognitive styles from other members - for instance, if some members were neurotypical while others were Autistic.
What It Doesn't Mean:
Many people mistakenly use neurodiverse where the correct word would be neurodivergent.

Of all the terminology errors that people make in writing and speaking about neurodiversity, the incorrect use of neurodiverse to mean neurodivergent is by far the most common.

There is no such thing as a "neurodiverse individual." The correct term is " neurodivergent individual."

An individual can diverge, but an individual cannot be diverse. Diversity is a property of groups, not of individuals. That's intrinsic to the meaning and proper usage of the term diverse. Groups are diverse; individuals diverge.

In addition, neurodiverse does not mean "non-neurotypical." The opposite of neurotypical is neurodivergent, not neurodiverse.

The opposite of neurodiverse would be neurohomogenous (meaning "composed of people who are all neurocognitively similar to one another").

Neurodiverse cannot be used to mean "non-neurotypical," because neurotypical people, like all other human beings, are part of the spectrum of human neurodiversity.

In North America, Europe, and Australia, white people are the racial group that holds the most privilege and societal power. But we do not use the term "racially diverse" to mean "non-white." "Racially diverse" means "including members of multiple racial groups."

To use the term "racially diverse" to mean "non-white," or to describe a Black or Asian-American person, for instance, as a "racially diverse individual," would not merely be an incorrect usage of the word "diverse" - it would also be racist.

It would be racist because it would imply that white people somehow occupy a special, unique position separate from the overall diversity of humanity - "There's us white people, and then there are all those diverse people." Such usage changes the definition of the word "diverse" to mean "not part of the privileged in-group." Again, that's not what the word means, and misusing it in that particular way serves to reinforce a racist mindset in which white people are seen as intrinsically separate from the rest of humanity, rather than as just another part of the spectrum of human diversity.

It is the same with the misuse of the term neurodiverse to mean "non-neurotypical." To describe an Autistic, bipolar, or otherwise neurodivergent person as a "neurodiverse individual" is not merely an incorrect usage of the word "diverse," it's also ableist.

It's ableist because it implies that neurotypical people somehow occupy a special, unique position separate from the overall neurodiversity of humanity. Misusing the word neurodiverse in that particular way serves to reinforce an ableist mindset in which neurotypical people are seen as intrinsically separate from the rest of humanity, rather than as just another part of the spectrum of human neurodiversity.

Humanity is neurodiverse, just as humanity is racially, ethnically, and culturally diverse. By definition, no human being falls outside of the spectrum of human neurodiversity, just as no human being falls outside of the spectrum of human racial, ethnic, and cultural diversity.

In summary, then: misusing the term neurodiverse to mean neurodivergent (i.e., non-neurotypical) is not only plain old bad English, it also subtly reinforces ableism and undercuts the fundamental tenets of the neurodiversity paradigm.

I hope this explanation will help to encourage people (especially people who identify as proponents of the neurodiversity paradigm or supporters of the Neurodiversity Movement) to avoid this problematic misuse of the term neurodiverse in the future, and, when possible, to correct such misuse where they encounter it.
Examples of Correct Usage: "We humans are a neurodiverse species." "We employ a wide variety of creative teaching strategies to accommodate the many different learning styles represented in our highly neurodiverse student body." "My neurodiverse family includes three neurotypicals, two Autistics, and one person who's both bipolar and dyslexic." "I think every single member of their board of directors is neurotypical. An organization that supposedly serves the needs of neurominority children should have a more neurodiverse board." Examples of Incorrect Usage:
"This group welcomes Autistics and other neurodiverse people."
It's nice to be welcomed, but there's no such thing as a "neurodiverse person." the correct phrase here would be "Autistics and other neurodivergent people."

"This group is open to both neurotypicals and the neurodiverse."
No, no, no. "The neurodiverse?" Seriously? What does that even mean? The spectrum of neurodiversity encompasses the entire human species, so one can't label any subset of the human species as "the neurodiverse." And neurotypicals are part of the spectrum of human neurodiversity, so it makes no sense to say "neurotypicals and the neurodiverse," as if those were two separate things. The correct way to say this would be, "This group is open to both neurotypicals and the neurodivergent."
Example of Possibly Correct Usage:
"The students in this classroom are neurodiverse.
This is correct usage if the speaker means that not all of the students in the classroom share the same general style of neurocognitive functioning. However, it is incorrect usage if what the speaker is trying to say is that it's a classroom for students who aren't neurotypical - if that's the case, then once again, the correct term would be neurodivergent instead of neurodiverse.

I hope this list of definitions will help to foster greater clarity and understanding, and more accurate writing, when it comes to the terminology around neurodiversity.

This article has been republished, with permission, from its author, Dr. Nick Walker.

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Neurodiversity: Some Basic Terms & Definitions

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What It Means: What It Doesn't Mean: Neurodiversity is a biological fact. It's not a perspective, an approach, a belief, a political position, or a paradigm. That's the neurodiversity paradigm (see below), not neurodiversity itself. Neurodiversity is not a political or social activist movement. That's the Neurodiversity Movement (see below), not neurodiversity itself.

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Autistic peer-to-peer information transfer is highly effective

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Autistic peer-to-peer information transfer is highly effective

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Abstract

Effective information transfer requires social communication skills. As autism is clinically defined by social communication deficits, it may be expected that information transfer between autistic people would be particularly deficient. However, the Double Empathy theory would suggest that communication difficulties arise from a mismatch in neurotype; and thus information transfer between autistic people may be more successful than information transfer between an autistic and a non-autistic person. We investigate this by examining information transfer between autistic adults, non-autistic adults and mixed autistic-with-non-autistic pairs. Initial participants were told a story which they recounted to a second participant, who recounted the story to a third participant and so on, along a 'diffusion chain' of eight participants ( n  = 72). We found a significantly steeper decline in detail retention in the mixed chains, while autistic chains did not significantly differ from non-autistic chains. Participant rapport ratings revealed significantly lower scores for mixed chains. These results challenge the diagnostic criterion that autistic people lack the skills to interact successfully. Rather, autistic people effectively share information with each other. Information transfer selectively degrades more quickly in mixed pairs, in parallel with a reduction in rapport.

Lay abstract

Sharing information with other people relies on the ability to communicate well. Autism is defined clinically by deficits in social communication. It may therefore be expected that autistic people find it difficult to share information with other people. We wanted to find out whether this was the case, and whether it was different when autistic people were sharing information with other autistic people or with non-autistic people. We recruited nine groups, each with eight people. In three of the groups, everyone was autistic; in three of the groups, everyone was non-autistic; and three of the groups were mixed groups where half the group was autistic and half the group was non-autistic. We told one person in each group a story and asked them to share it with another person, and for that person to share it again and so on, until everyone in the group had heard the story. We then looked at how many details of the story had been shared at each stage. We found that autistic people share information with other autistic people as well as non-autistic people do with other non-autistic people. However, when there are mixed groups of autistic and non-autistic people, much less information is shared. Participants were also asked how they felt they had got on with the other person in the interaction. The people in the mixed groups also experienced lower rapport with the person they were sharing the story with. This finding is important as it shows that autistic people have the skills to share information well with one another and experience good rapport, and that there are selective problems when autistic and non-autistic people are interacting.

Introduction

Autism spectrum disorder (hereafter 'autism', Kenny et al., 2016) is clinically characterised by lifelong impairments in social and communication domains, the presence of restricted and repetitive behaviours and sensory perceptual features ( American Psychiatric Association (APA), 2013). A large body of research indicates that autistic people struggle with attributing mental states to others and identifying social cues such as basic and complex facial emotions ( Baron-Cohen et al., 1997), tone of voice ( Rutherford & Baron-Cohen, 2002), sarcasm ( Persicke et al., 2013) and social faux pas ( Baron-Cohen et al., 1999) compared with non-autistic people, resulting in difficulties in social interactions.

However, non-autistic individuals have communicative difficulties when interacting with autistic individuals. Non-autistic people struggle to identify autistic mental states ( Edey et al., 2016), identify autistic facial expressions ( Sheppard et al., 2016), overestimate autistic egocentricity ( Heasman & Gillespie, 2018), and are less willing to socially interact with autistic people ( Sasson et al., 2017). Thus, although non-autistic people are generally characterised as socially skilled, these skills may not be functional, or effectively applied, when interacting with autistic people. This bi-directional disconnect in communication and understanding between autistic and non-autistic people has been labelled the 'double empathy problem' ( Milton, 2012; Milton et al., 2018). One implication of the 'double empathy problem' is that if autistic 'social impairments' result from a mismatch between autistic and non-autistic populations, they may disappear in within-group interactions. Thus, predictions based on clinical definitions of autism about autistic-autistic interaction would be that they would be non-functional or ineffective, and in contrast, predictions based on the Double Empathy theory about autistic-autistic interaction would be that they would be successful and positive. However, to date, there is no experimental evidence directly testing whether autistic-autistic interactions are successful.

Recent research has found that autistic people prefer interacting with other autistic people, and experience close social affiliation with them ( Crompton et al., 2020; Morrison et al., 2019), and has begun to examine the mechanisms that underlie this preference. Autistic people are, by definition, more familiar with autism, and are more accurate at correctly detecting the intentions of autistic people than non-autistic people ( Heasman & Gillespie, 2018; Sheppard et al., 2016). Autistic people report exhibiting fewer autistic traits when interacting with other autistic people compared with non-autistic people ( Gernsbacher et al., 2017) and are less deterred by negative first impressions of autistic adults in deciding whether to later socialise with them ( DeBrabander et al., 2019). In addition, autistic interactions follow a distinctive pattern of intersubjectivity, which while unconventional by non-autistic standards, function effectively to facilitate mutual understanding ( Heasman & Gillespie, 2019a). Collectively, this evidence suggests that autistic interactions may be unique, but similarly facilitative of communication as non-autistic interactions. However, to date, not research has looked at information transfer as a measure of communicative success, contrasting how autistic and non-autistic people share information with their autistic and non-autistic peers.

This study directly compares how autistic and non-autistic people interact when in matched (same diagnostic status) or mixed (autistic with non-autistic pairs), in an information-sharing context. Aligned with the double empathy theory, we hypothesised that information transfer would yield higher fidelity for sequences of matched pairs (whether all autistic or all non-autistic), and that there would be poorer quality information transfer for mixed pairs of autistic and non-autistic people. We also hypothesised that, alongside information transmission, self-rated rapport would be higher for matched pairs (whether all autistic or all non-autistic), and that mixed pairs would experience lower interactional rapport.

Information transfer was operationalised using a 'diffusion chain' technique ( Bartlett, 1932) ( Figure 1) which involves examining the fidelity of information as it is passed along linear 'chains' of participants. By assessing and analysing the rate which information degrades along the chain, the efficacy of information transfer can be explored ( Mesoudi & Whiten, 2008). This type of diffusion chain paradigm is novel to the field of autism research.

Methods

This study was carried out in accordance with the British Psychological Society's Code on Human Research Ethics. Experimental procedures were reviewed and approved by the University of Edinburgh Psychology Research Ethics Committee, and all participants provided written informed consent prior to participating in the study. Participants were remunerated for their time.

Study design

The article describes a between-groups experimental study, comparing information-sharing outcomes using a diffusion chain paradigm, comparing autistic, non-autistic and mixed groups.

Participants

A total of 72 adult volunteers participated, with 24 adults in each of the autistic, non-autistic and mixed sets. G*power was used to run a prospective power analysis, indicating 95% power to detect a medium effect of 0.5 at the standard 0.05 alpha error probability with a sample size of 66. To allow us to have an even number of eight-person diffusion chains in each group, 72 participants were recruited through community networks, social media and local autism organisations.

The three groups were matched on age, gender, years of education and intelligence quotient (IQ) ( Tables 1 and 2). All spoke English to a native level and did not have a clinical diagnosis of social anxiety disorder. All non-autistic participants scored less than 32 on the Autism Quotient (AQ), indicating low levels of autistic traits ( Baron-Cohen et al., 2001). All autistic participants were either clinically diagnosed ( n = 33), or if self-diagnosed ( n = 3) they scored above 72 on the Ritvo Autism-Aspergers Diagnostic Scale - Revised (RAADS-R). A RAADS-R score of above 65 is consistent with a clinical diagnosis of autism Ritvo et al., 2011. In addition to this, all self-diagnosed autistic participants scored above 32 on the AQ indicating high levels of autistic traits ( Baron-Cohen et al., 2001). Participants also completed the Wechsler Abbreviated Scale of Intelligence II (WASI-II) ( Wechsler, 2011), a measure of IQ, with all participants scoring within a typical range. Demographics for the autistic and non-autistic participants are reported in Tables 1 and 2).

Descriptive statistics (mean (standard deviation) on demographics by diagnostic status, using independent t-test and Fisher's exact test comparisons.

Descriptive statistics (mean (standard deviation) on demographic for assigned sets, using Kruskal-Wallis chi square, ANOVA and Fisher's exact test comparisons.

Procedure

The experiment took place in a research suite at the Division of Psychiatry at the University of Edinburgh. Seventy-two participants were divided into three equal sets: non-autistic (N), autistic (A) and mixed (M). Each set was divided further into three diffusion chains of eight people: nine diffusion chains in total. Each of the nine diffusion chains was run on separate 'Research Days', which eight participants attended at a time. Participants were assigned to one of nine Research Days based on their diagnostic status (autistic or non-autistic), age, gender and years of education.

Participants were part of eight-person chains, where either all participants were autistic, all were non-autistic or four were autistic and four non-autistic. In this last case, the chain alternated between the two, starting with a non-autistic participant. Each of the chains was ordered in ascending age order, to minimise any potential effects of age-related memory decline, with minimal switches by gender (see Supplementary Table 1). Participants were aware whether they were in an autistic, a non-autistic or a mixed chain. Participants did not meet before the study started, and were isolated in separate rooms throughout the study, except when participating in the diffusion chain.

The story used in the diffusion chains was a 30-point story, which followed a bear on a surreal adventure ( Crompton & Fletcher-Watson, 2019). The story was designed to be difficult to predict, and did not include any inherently social aspects. The story had a Flesch-Kincaid Grade Level of 4.4, equivalent to age 9-10 reading level and a Flesch Reading Ease score of 90.1; a score of 60 or more is considered easy to read ( Flesch, 1948; Kincaid et al., 1975).

The researcher read the story to the first participant (A). The researcher left the room, and a second participant (B) entered. A then recounted the story to B. A left the room, and a third participant (C) entered. B then recounted the story to C and so on, to the eighth participant (H). The eighth participant recounted the story aloud alone. Participants waited in separate rooms for their turn, to avoid contamination during the information sharing. All mixed chains started with a non-autistic participant. Diffusion chains were video recorded for scoring purposes. Participants' final score corresponded to the number of story details they had passed on to the next person in the chain.

After completing the diffusion chain, participants indicated their feelings of rapport with their neighbours in the chain using a 100-point scale with five dimensions: ease, enjoyment, success, friendliness and awkwardness (reverse scored). The five dimensions had a Cronbach's alpha of 0.71, and so were summed to create a single scale of interactional rapport. Subsequent Bayesian analyses were calculated in JASP ( JASP Team, 2019).

Results

Initial pre-registered ( Crompton & Fletcher-Watson, 2019) analyses tested for chain-type differences in the overall number of story details (out of a total of 30, averaged across all participants in each chain type regardless of position) recalled using analysis of variance (ANOVA), revealing significant group differences ( F(2,69) = 4.60, p < 0.05). Post hoc contrasts indicated that the non-autistic and autistic chains did not differ from each other (MeanN = 12.40, SDN = 5.28; MeanA = 12.96, SDA = 5.31, Tukey honestly significant difference (HSD) p = 0.92), though both groups recalled significantly more details than the mixed chains (MeanA-N = 8.92, SDA-N = 4.34; Tukey HSDN and A-N p = 0.04, TukeyA and A-N HSD p  = 0.01).

Regression analysis was carried out to investigate whether number of details recalled deteriorated at a comparable rate for the three chain types ( Figure 2, see Supplementary Figure 1 for individual chains). Predictors were chain type (autistic, non-autistic and mixed, with non-autistic as the reference group), and position in the chain (1-8), and included an interaction of chain type and position in chain. Individual data were entered without first being averaged across three chains of the same type. There was a steeper decline for the mixed chains ( b = -6.04, standard error ( SE) = 1.32, p < 0.0001), while autistic chains' recall did not differ to that of chains of non-autistic people ( b = 0.13, SE = 1.32, p = 0.93), see Table 3. Position also significantly predicted the amount of information recalled ( b = -2.15, SE = 0.18, p < 0.0001), and together chain type and position accounted for 85% of the variance in amount of information recalled ( F(5,66) = 77.05, p < 0.0001, R2 = 0.85). In addition, a significant interaction between being in an mixed chain and the order of participation was found, indicating that the rate that detail recall deteriorated in the mixed chains was significantly faster ( b = 0.57, SE = 0.26, p  < 0.05). Thus, autistic and non-autistic chain types do not differ in their information-sharing abilities, and selective penalties for information transfer occur when there is a diagnostic mismatch.

Regression of the effect of chain type and order in chain on overall accuracy of data transfer between participants.

As shown in Figure 2, the mean number of details recalled by the first person in a mixed chain was lower than for other chains. Supplementary Table 2 describes the first participant in each diffusion chain, alongside the number of details shared with the next person in the chain. This reduced recall early in the chain disadvantaged subsequent people in the chain, in terms of their score on our 'number of details recalled' measure, since they had less information available to recall. To account for this, data were converted into percentages by calculating the proportion of details recalled relative to number of details recalled by the first person in each diffusion chain, and not the number of details in the initial story. Thus, the first participant in each chain would have a proportional score of 100% and each subsequent participant's score was calculated as a proportion of this ( Figure 3).

An ANOVA revealed a main effect of chain type ( F(2.69 = 11.39, p < 0.001), see Table 3. Post-hoc contrasts again indicated no significant difference between autistic and non-autistic chains (MeanA = 63.59, SDA = 24.46; MeanN = 58.60, SDN = 24.40, Tukey HSD p = 0.12). The mixed chain differed significantly from both non-autistic chains (MeanAN = 51.91, SDAN = 24.54, Tukey HSD p < 0.05), and autistic chains (Tukey HSD p < 0.001). Regression analysis indicated that there was a steeper decline for the mixed chains ( b = -11.41, SE = 5.68, p < 0.05), while autistic chains' proportion did not differ to that of chains of non-autistic people ( b = 5.66, SE = 5.68, p = 0.32), see Table 4. Position also significantly predicted the proportion of information shared ( b = -10.05, SE = 0.79, p < 0.00001), and together chain type and position accounted for 87% of the variance in proportion of information recalled ( F(5,66) = 94.50, p < 0.0001, R 2 = 0.87).

Regression of the effect of chain type and order in chain on the proportion of data transferred between participants.

Thus, even though the mixed diffusion chains start with a reduced amount of information to transfer, this group still share proportionately less of that information through the diffusion chain. In contrast, autistic and non-autistic chains do not significantly differ from one another in the proportion of information shared.

On completion of the diffusion chain, participants were asked to rate their interactional rapport with each person adjacent to them in the chain, indicating how comfortable they had been during their interactions. Participants rated their rapport both with the person who had recounted the story to them (precede rapport) and the person they had recounted the story to (succeed rapport).

Figure 4 illustrates precede and succeed rapport scores by group. Rapport between chains was compared using Bayesian ANOVA using JASP using a default Cauchy prior (0, r = 1/sqrt(2)), and prior odds of 0.59, and using a Bayes Factor of <6 to make inferences as per our pre-registration, based on Kass and Raftery ( Kass & Raftery, 1995). Bayesian ANOVA indicated differences between precede rapport in the three groups (BF10 = 71.70, error < 0.01%), with post hoc contrasts showing significant evidence that the non-autistic and mixed chains differed (BF10 = 62.32, error < 0.001%). Evidence of difference was moderate for the comparison of autistic and mixed chains (BF10 = 5.86, error < 0.001), and there was no evidence of difference in precede rapport between autistic and non-autistic chains (BF10 = 0.81, error < 0.01). A similar pattern was found for succeed rapport with significant evidence of difference between non-autistic and mixed chains (BF10 = 6.55, error < 0.001), but no evidence of difference between the autistic and mixed group (BF10 = 0.57, error < 0.05%) nor between the autistic and non-autistic groups (BF10 = 0.67, error < 0.05%).

Within this diffusion chain paradigm, autistic people recall information shared by autistic peers as effectively, as non-autistic people recall information shared by non-autistic peers. Yet, information sharing is significantly poorer in chains of mixed neurotypes. These deficits in information transfer between mixed neurotype groups are accompanied by significantly poorer self-rated interactional rapport.

Discussion

Autism is conceptualised clinically, and in scientific research, by core deficits in social communication, interaction and emotional reciprocity, deficits in non-verbal communicative behaviours used for social interaction and an absence of interest in peers ( APA, 2013). In theory, this should translate into poor information transfer with others. These results, however, are the first empirical evidence that suggest the difficulties in autistic communication are apparent only when interacting with non-autistic people, and are alleviated when interacting with autistic people. This is evidenced by our finding that autistic and non-autistic people do not significantly differ in how accurately they recall information from peers of the same neurotype but that selective difficulties occur when autistic and non-autistic people are sharing information. This occurs alongside significantly lower rapport within mixed groups.

These results challenge traditional assumptions of autistic social impairment. The findings are inconsistent with the social-cognitive deficit narrative of autism. We found a selective breakdown of information transfer and rapport occurred in mixed autistic-non-autistic interactions, indicating that the diagnostic status of an interlocutor plays a critical role in both the quality and enjoyment of and interaction, for both autistic and non-autistic people. The quality of transfer of information within all autistic chains did not differ from information transfer in all non-autistic chains, indicating that autistic peoples' abilities to share information and build rapport do not significantly differ from their non-autistic counterparts.

These findings are consistent with prior research indicating that autistic people experiencing close social bonds and empathy with other autistic people, though may experience specific difficulty interacting with non-autistic people ( Crompton et al., 2019; Morrison et al., 2019). This lends additional support to the Double Empathy theory, and suggests that autistic social 'deficits' are better conceptualised as interaction and communicative challenges, operating bi-directionally for autistic and non-autistic people ( Fletcher-Watson & Bird, 2020; Milton, 2012). Our data are reminiscent of established effects of in-group/out-group status on imitation, suggesting that autistic people are different without being deficient ( Bourgeois & Hess, 2008; Yabar et al., 2006) and have implications for autism diagnosis and post-diagnostic support.

This study raises many questions for future research; for example, would mixed chains show a different pattern if an autistic participant began the chain? We could hypothesise that the first non-autistic participant in the mixed chain is recalling and sharing fewer details due to an anxiety around how to interact with autistic people, or an intentional oversimplification of information for the perceived benefit of the autistic learner. These effects may or may not be present if an autistic person were the first participant in the chain, and future research may focus on this question. However, if it were the case that non-autistic people oversimplify in an attempt to lower communicative pressures on autistic people, this could have a dramatic impact on autistic peoples' ability to get the information they need from non-autistic people in their day-to-day life. Future work should focus on understanding information transfer, rapport and dynamics between mixed pairs and groups, as well as in within autistic groups, to more fully understand the mechanisms underlying autistic social cognition.

This study does have limitations, which could be addressed by future research in this field. First, though fully powered to detect even moderate effects, the sample size was relatively modest, and replications are warranted. Second, participants were aware of the diagnostic status of the person with whom they were interacting, which could have affected their behaviour. However, previous research has shown that when non-autistic people believe they are interacting with an autistic person, they attempt to behave in a helpful way ( Heasman & Gillespie, 2019b), and sharing diagnostic information results in greater acceptance of autistic people ( Sasson & Morrison, 2017). As such, it may be hypothesised that an even larger effect would be found if participants were blind to the diagnostic status of the others in their diffusion chain. Third, the diffusion chains were not equally divided by gender which may have affected results ( Wood et al., 2013). However, the most prominent comparisons of autistic males and autistic females to date have focused on access to diagnosis ( Rutherford et al., 2016), co-occurring conditions ( Mannion et al., 2013) and behavioural profiles ( Kirkovski et al., 2013), but not on factors expected to drive this effect, for example, recall ability or verbal IQ. Thus, we cannot hypothesise whether the gender distribution in this sample drives the effect via cognitive mechanisms. It is possible that rapport scores and social dynamics could be different within a more mixed or predominantly male sample, for example, if autistic males were less likely to camouflage ( Hull et al., 2020) and are thus more likely to align with non-autistic expectations of what autism is. While this is a tentative hypothesis, if anything this could lead to an even greater disadvantage in the mixed chains. Fourth, the samples had IQ within the typical range, communicated verbally and were likely to have received their diagnosis in adulthood given the relatively high mean age of diagnosis. It is not known whether similar effects would be found in autistic people with intellectual disability.

Finally, the Bayesian comparison for rapport did not yield especially high Bayes Factors when comparing autistic and mixed groups. Further work needs to establish the validity and reliability of this effect through replication and across tasks and populations. Specifically, the connection between poor information transfer and lower ratings of rapport bears further scrutiny - does lack of rapport drive the effects we've seen here? Or is the mechanism more behavioural, for example, due to mismatches in the type and manifestation of social cues used during the interactional task? Uncovering the mechanism of the effects reported here will have probable implications for our understanding of social cognition and interaction itself ( Sheppard et al., 2016).

In addition to these conceptual advances, our findings may also carry relevant practical implications for psychological, psychiatric and social practice. Confirmation of the finding that autistic social difficulties operate solely across the autistic-non-autistic divide could have profound implications for the classification of autism as a disorder in the Diagnostic and Statistical Manual ( APA, 2013). In the meantime, our data suggest that (non-autistic) practitioners supporting autistic people should be conscious of the challenges to information-transfer described here. In the context of rising concern about suicide in autism ( Cassidy & Rodgers, 2017) and evidence that 'sense of belonging' is a key protective factor against suicide ( Pelton & Cassidy, 2017) evidence of improved rapport between autistic people bolsters existing calls for more autistic peer-to-peer support ( Iemmi et al., 2017). Subsequent research is required to delineate the differences in autistic and non-autistic interaction styles, which will offer practical utility to psychologists, psychiatrists and health professionals, if they can be taught to adapt their communication style to better accommodate people with autism. While replications are warranted, this radical finding challenges the way autism has been characterised for decades, and there are significant and wide-reaching implications for how autistic people are supported in society.

Acknowledgements

The authors thank Felicity Sedgewick for her input with task design, and Panagiota Ira Bitsola, Sakura Brandi, Laura Carney, James Clarke and Alice Hodgkinson for their assistance during data collection.

Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by a grant from the Templeton World Charity Foundation (grant number: TWCF0200).

ORCID iDs
Catherine J Crompton https://orcid.org/0000-0001-5280-1596

Supplemental material
Supplemental material for this article is available online.

Sue Fletcher-Watson https://orcid.org/0000-0003-2688-1734

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Autistic peer-to-peer information transfer is highly effective - Catherine J Crompton, Danielle Ropar, Claire VM Evans-Williams, Emma G Flynn, Sue Fletcher-Watson, 2020

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Abstract Effective information transfer requires social communication skills. As autism is clinically defined by social communication deficits, it may be expected that information transfer between autistic people would be particularly deficient. However, the Double Empathy theory would suggest that communication difficulties arise from a mismatch in neurotype; and thus information transfer between autistic people may be more successful than information transfer between an autistic and a non-autistic person.

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We present differently online than we do in person. Anyone who's tried online dating has seen that difference, or been it. For most of us, the transformation happens because the internet allows us to be something we're not. For autistic people, it's because the internet allows them to be something they are.

Online communication loses the awkward
A large proportion of the smart, eloquent, funny, teasing, thoughtful, passionate posts on my Facebook news feed comes from autistic friends and acquaintances. Online and in writing, they are freed from the discomforts of face-to-face communication. "In person I tend to be a walking bundle of awkwardness oozing big fat gooey drops of awkwardness from every pore," says my friend Brigianna Spencer (via Facebook). "I'm told I'm almost eloquent in writing" ( more than almost) "but when I start to talk, I say things like 'that thing that goes with that big round thing'."

Online, many autistic people pass as non-autistic
Plenty of autistic people report the same social dissonance. "People who know me in real life have been shocked when they see my Facebook posts, because I seem so different," says Leila Yoder, of Georgia. Sometimes the anguish is palpable. A 2010 study of online autistic culture quotes "John", 24: "And, one guy, I was talking to him online. He was like, 'This is not John. John stutters and talks fast. John's a retard. This is not John.' I talked so intelligently, articulately online that he couldn't believe it was me."

Autism expert undiagnoses autistic people online
I've been reminded of this while reading The Book of Woe: The DSM and the Unmaking of Psychiatry by Gary Greenberg, a Connecticut psychiatrist and writer (Blue Rider Press, 2013). Greenberg describes the unhappy relationship between Susan Swedo MD, chair of the DSM-5 Neurodevelopmental Disorders Workgroup, and the Asperger's Association of New England (AANE), a nonprofit based in Greater Boston (I'm on board of directors). Like GRASP, AANE petitioned the American Psychiatric Association (APA) to reconsider the elimination of Asperger's as a discrete diagnosis. At the annual meeting of the APA in May last year, Greenberg reports, Swedo revealed what she thought of the petitioners:

It's too bad no one was in attendance from the Asperger's Association of New England. It would have been interesting to hear the organization's response when Swedo...explained why she thought it was safe to ignore their objections. "Most of the individuals who belong to the AANE call themselves Aspies," [Swedo] said, "but that may need to be a new diagnosis introduced in future editions of the DSM, because Aspies don't actually have Asperger's Disorder, much less Autism Spectrum Disorders."

In the Q&A, I asked Swedo how she knew this.

"By my interactions with them," she said. "We have been been petitioned by so-called Aspies and literally they are writing to us and saying I am an Aspie...and they describe what, if they had seen a psychiatrist, might have been called Obsessive-Compulsive Personality Disorder."

"So based on your interaction, you can conclude that people who call themselves Aspies don't have Asperger's?" I asked. Was she really diagnosing people whom she knew only through their letters of complaint?...Did she mean to confirm in a public forum the worst fears of people with Asperger's and their families: that the APA, convinced that they had made it onto the sick rolls illegitimately, was determined to kick them off?

Swedo backpedalled a little, allowing that some of the AANE members might indeed have Asperger's, but still, she insisted, "there is an element of folks... who do not meet the criteria for " Whatever they had, and they may well have had something (after all, they were harassing her), "it just didn't have the same flavor as Asperger's". [p.326]

There's plenty to pick apart in Dr. Swedo's comments, if I were that type. [I am: see below.] But mostly I'm intrigued by her willingness to undiagnose strangers based on emails and petition comments that lack an Aspergerian or autistic "flavor".

"Awfully articulate for an autistic person"
My Facebook friends have diagnoses of Asperger's Disorder, PDD-NOS, and Autistic Disorder. In almost every case, I know they're autistic only because they're out and talking about it. Still, the idea that their autism should be otherwise apparent is not confined to Dr. Swedo. Many autistic self-advocates report that their insights into autism are rejected by non-autistic parents of autistic children. S. Dorrance Minch, an autistic Indianan, recently paraphrased in a Facebook post a parent at the chat room IndyMom: "How dare you presume to speak for people with autism? Yes, we know you're autistic, or so you claim, anyway- you're awfully articulate for a person with autism- but..." But you're not autistic like my kid is autistic, if you're autistic at all.

The web for autistics is like sign language for the deaf
Later, Minch told me (by Facebook message), "I'm more fluent when writing than I am when talking. I have a tendency to stammer and word-fish when under stress." In the 2011 documentary Wretches and Jabberers, numerous autobiographies, and other sources, autistic self-advocates make the same point: written communication comes more easily than face-to-face and phone interactions ( Davidson, 2008). Autistic writers and researchers have described text-especially online text-as a communication leveller between autistic and non-autistic people. "The Internet is for many high-functioning autistics what sign language is for the deaf," Martijn Dekker, an Asperger activist, famously said.

The advantages of text-based communication
In writing, then, the most striking thing about that autistic flavor is its absence. "Studies of the blogs and forum posts by adults with ASD reveal no discernable differences between their writing and that of other posters" ( Burke, Kraut & Williams, 2010). That seems to be because text offers a clear structure, reduced sensory demands, increased processing time, and visual anonymity. "On the Internet, freed from the constraints of neurotypical timing, neurotypical ways of interpreting body language, free from the information overwhelm of eye contact, the energy demands of managing body language, [those with AS] sound, simply, 'normal', and often, eloquent," said Judy Singer, an autistic social scientist, in Why Can't You be Normal for Once in Your Life? (a 1999 article that launched the term neurodiversity).

"The CDC will be excited to hear that the internet can apparently cure autism," said Leila Yoder (by e-chat). "But if they diagnosed neurotypicals who write badly, the rates would go right back up again."

Autistic people on written versus face-to-face interaction

"In text, I come over as confident, friendly, funny and intelligent, and other people are drawn to me and want me around. In face-to-face interaction, I stumble over words, have difficulty articulating myself, can't make eye contact, couldn't make a joke if my life depended on it, and routinely repel, annoy, and bewilder other people with my behaviour...I got up the courage to meet an online friend in real life. Despite my warning him beforehand, he didn't seem to be able to get his head around the fact that I was the same person, because the difference is so dramatic...It's bizarre to have my relationships with people divided this way." - Jinks at WrongPlanet.net

"I can type a lot more easily than I can talk. When I talk, I get words mixed up and out of order." - Libby Spencer, 13

"Aside from text/speech differences, online communication seems to have a different culture from face-to-face communication. Social norms are different. Expectations are different. In general, I think the same factors that make online communication notoriously more difficult for neurotypicals (lack of body language, tone, inflection, or background information about the people one interacts with) are the same factors that make it easier for autistics." -Brigianna Spencer, blogger, GA

"I naturally think in written words rather than spoken ones. In a spoken conversation, I have to mentally translate the other person's speech into written words, compose a response, and translate my response into speech. In a written conversation, I don't need to do this. Background noise, mumbling, overlapping speech, and other barriers to auditory processing also make spoken conversations more difficult." - Leila Yoder, GA

"Text flows immediately into concepts, but speech needs more time to process. I need time to translate what I hear into what I think, and often that process moves more slowly than an actual conversation. So, while I am processing sentence #1, the person on the phone has moved on to #3 and I completely missed #2. It then becomes impossible to catch up and so very confusing." -Michael Forbes Wilcox, MA

"In cyberspace, you are protected against the misleading messages given out (without your knowledge) by your body, your face, your voice and your lifestyle. You can convey what you want to convey. You can be seen as yourself." -"Pat," quoted by Burke, Kraut & Williams

Stray observations on Swedo's stray observations

* "Aspies don't actually have Asperger's Disorder, much less Autism Spectrum Disorder." This is an odd dichotomy given the APA's argument that Asperger's Disorder is Autism Spectrum Disorder, and its insistence that it wasn't out to undiagnose people with Asperger's.

* Identifying as Aspie is itself diagnostic (of not having Asperger syndrome). Those Aspies might wonder whether identifying as an autism expert is diagnostic of not being one.

* Writing off an organization with no awareness of the level of disability it represents. One of the biggest problems with the APA's approach has been the lack of respect for some of the communities most affected by the DSM-5 changes. Of all the factors that eroded my confidence in DSM-5, off-the-cuff public comments by members of the Task Force and Workgroup topped the list by far.

* "There may need to be a new diagnosis introduced in future editions of the DSM." LOL, Dr. Swedo.

* Wait, isn't that Social Communication Disorder?

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We present differently online than we do in person. Anyone who's tried online dating has seen that difference, or been it. For most of us, the transformation happens because the internet allows us to be something we're not. For autistic people, it's because the internet allows them to be something they are.

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Dispelling the empathy myth – hyper-empathy and autism

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Dispelling the empathy myth – hyper-empathy and autism

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I am often correcting people who believe the myth that autistic people lack empathy. One of the many things I say to refute this myth is that many Autistic people possess something called hyper empathy. Hyper empathy is where a person can experience the emotions of those in the vicinity almost as if by osmosis. It is very common amongst autistic people.

I have a number of experiences of hyper empathy from my own life which illustrate the phenomenon.

When I was a child I had a friend whose father passed away. I found it unbearable to be close to her as I would experience her raw grief. I thought I must be a monster for not wanting to be near my friend when she was grieving. I believed it meant that I lacked empathy when in fact quite the opposite was true. Often Autistic children (and adults) will distance themselves from a friend or relative who is going through a tough time as a kind of self protection. If they are near a person in pain they feel the pain themselves and it can be unbearable.

My hyper empathy has not lessened in adult life. I had a work colleague a few years ago who was extremely angry and unpleasant. I could feel her anger coming up the corridor long before she was in view from my desk. Her anger was like a tangible thing invading my mind. I liked that I got some time to prepare before she turned up and directed that anger at me - which she often did! I have an Autistic friend who accompanied me to a large event I was speaking at a few years ago. The audience was around 1300 people. I mentioned hyper empathy and being aware of the emotions of those around us to my friend and she told me she could feel that a person in the middle of the audience was having a really hard time and was very sad. So far from the stereotype of emotionally dead people who all lack empathy, Autistic people are in fact often extremely perceptive and aware of the emotions of others.

As many of my regular readers know, I have a mental illness which results in the need for hospital stays from time to time. I have said to my psychiatrist that I would prefer to be miserable at home with just Mr Kitty as company than be miserable among a ward full of other miserable people. Hospital is horrific for me and one of the main reasons for that is that in clinical settings I pick up on all the sadness, confusion, fear and anxiety of those around me. I am also a very caring person so I get a double whammy - I worry about the welfare of my fellow patients and I feel their misery when they are having a hard time. It results in me being very stressed in inpatient settings.

Allistic people don't often understand hyper empathy which can mean that they dismiss it. I see it as part of what forms autistic culture - a mostly autistic experience which fellow autistics are more likely to relate to and allisticsmight not quite 'get.' I always find it telling when someone says to a room full of autistics that we lack empathy. The response is usually pretty emphatic and they are set right, but the empathy myth is a prevalent one and one we need to refute whenever it comes up. The empathy myth goes to ideas of autistics being somehow less human than others and as such is a very dangerous thing. The experience of hyper empathy is a good way to refute the empathy myth but not many people know it is a 'thing.' I often mention hyper empathy to other autistics and they tell me they have never heard of it - and then usually go on to tell me that it describes them! We need to get information out there on these topics and dispel that myth that we lack empathy once and for all as it is harmful and invalidating to Autistic people and our experiences.

I am an autistic author, presenter and blogger. I blog about Autism, Disability and gender diversity View all posts by Yenn

Published

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Dispelling the empathy myth - hyper-empathy and autism

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I am often correcting people who believe the myth that autistic people lack empathy. One of the many things I say to refute this myth is that many Autistic people possess something called hyper empathy. Hyper empathy is where a person can experience the emotions of those in the vicinity almost as if by osmosis....

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Identity-First Language - Autistic Self Advocacy Network

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ASAN intern Lydia Brown originally published this article on their blog Autistic Hoya under the title The Significance of Semantics: Person-First Language: Why It Matters. At the Adult Services Subcommittee’s final meeting last Wednesday, much to do was made about semantic disagreements -- “ASD indi…

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List of blogs by Actually Autistic bloggers

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List of blogs by Actually Autistic bloggers

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The invisible oppression of the autistic female

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The invisible oppression of the autistic female

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When I was in the 3rd grade, I befriended a boy who joined our class halfway through the year. He had a difficult time fitting in, to say the least, but I had always been the type of kid to embrace others eagerly. We became fast friends, our favorite pastime being movie talk. At least I thought it was our favorite pastime. It turns out it was my favorite pastime. I learned this when he confronted me mid-sentence one day with a frustrated look on his face, "Do you talk about anything other than movies?!"

Several years later, I almost followed someone off the bus at a stop that wasn't mine because I wasn't finished telling them one of my famous "ghost stories." What I didn't know then, what my family and friends didn't know then, was that I was an autistic child.

Now, I'm an autistic adult, and all those seemingly innocuous memories are more important than ever. But I'm not here to talk about what it means to just be autistic. I'm here to talk about what it had meant to be an autistic girl and what it now means to be an autistic woman. Can you think of a single autistic woman other than maybe Temple Grandin? It's harder than you think, but there is a reason for that, and it's not because we don't exist. It's because capitalism and misogyny have made us invisible.

Who is the first autistic person that comes to your mind? Dustin Hoffman's character from Rain Man, maybe? Sheldon Cooper from The Big Bang Theory? Both male, both fictional. The reality is, most of the public's conception of what an autistic person is like is extremely male-centric and two-dimensional, at that. What if I told you, the way most people understand autism is harmful to women on the spectrum? The way autism manifests in men is vastly different from how it manifests in women, and because of this, women often don't get the crucial support they need during childhood development. I lived for twenty-four years without knowing I was autistic. Many women on the spectrum have very similar stories.

One of the most prominent behaviors in autistic women is what is known as "camouflaging" or "masking." This is the behavior of mimicking neurotypical social norms in order to conceal social disparities. To provide a little insight about how this manifests, when I enter a social situation with people I do not know, I use a different social language. This is a language I have learned by passively observing others and have practiced for years.

Think of it this way: To me, a conversation is like a jigsaw puzzle. If I want to succeed, I have to figure out which puzzle pieces to put where in order to complete the big picture.

For instance, when someone says they just got engaged, my reaction-according to interactions I've observed over time- should be to look surprised, smile, congratulate them, and maybe lightly touch them on the upper arm to express sincerity. Maybe I couldn't care less whether or not this person got engaged, especially if I barely know them. But mimicking neurotypical social norms in such a way is going to provide me a much more favorable outcome than if I didn't. By camouflaging, I have been able to (mostly) successfully follow the rules of a world I don't quite understand. This was crucial to my social survival as a child.

Learning this behavior came at a great cost, however, and not because I am autistic, but because I did not receive the support I so desperately needed as a child. I simply did not understand what I was doing or why.

Junior high introduced a whole new complexity to social relationships. This is true for us all. But I was woefully less equipped to navigate such complexities than my neurotypical peers. I cannot tell you how many friends I lost from junior to senior high who simply, one day, decided they wanted nothing to do with me anymore. I was still nowhere near as proficient at camouflaging then as I am now, so I had a much more difficult time knowing how to manage my behaviors.

One of the behaviors I struggle with most is fixation. If I'm interested in something, I obsess over it. I'll binge watch a TV series and then sit down at my computer and make a very detailed file system in which I will download and catalog fan art I find on the Internet. It's also incredibly difficult to pull me away from something once I set my mind to it. Parents often didn't like me because of this. I was a pusher. If I wanted something, I pushed and pushed and pushed until I got my way. Honestly, I was likely too intense for other kids. Which is fine. I understand now how I could have handled situations better. But the issue is, I knew none of this back then. So, when friends suddenly started ignoring me and avoiding me at all costs, it was devastating. What did I do wrong? Why won't they at least tell me what I did? It was a vicious cycle that broke me down mentally and emotionally. Once a jubilant, eager child, I became a skeptical, depressed young adult.

When I was 18, I lost a very close friend. It happened the same way it always did. I suddenly was not a person she wanted to be around anymore. Several months later, I intentionally overdosed on sleeping medication and ended up in the hospital. I just couldn't take it anymore. Obviously, there was something terribly wrong with me and I would never be able to figure out what it was. I had been agonizing over it for years. It was a dark time in my life. I felt completely helpless and avoided making any new friends out of fear of being hurt again. It was the one part of me I actually felt in control of.

Sometime later, I befriended someone who asked me if I was autistic. It was the first time in my life anyone had asked me such a question and I vividly remember thinking how strange it was. See, this person was autistic, and they recognized autism in me. That's when I started reading about autism. I wish I could describe to you how it felt to recognize myself for the first time in 20 years. All my life, the world around me felt out of focus, but now I could finally see the details. It was the biggest relief I'd ever felt, but no one should ever have to experience such a sense of relief under the circumstances I did.

All too often, young autistic girls suffer the way I had. Because of the emotional trauma associated with such experiences, we are frequently misdiagnosed with mental disorders such as bipolar disorder, borderline personality disorder, paranoid personality disorder, or histrionic personality disorder, to name a few. Some women go their entire lives without knowing they are autistic. Because of this, in conjunction with the successes of camouflaging, we are systematically gaslighted from a young age.

I can't tell you how many times I've heard the words, "You're autistic? Wow, you're so well-spoken! Are you sure?" With a single exchange, my entire existence is invalidated and erased. Yes, I'm sure. I have the scars to prove it.

Living with autism in a neurotypical world is challenging enough as it is, but throw capitalism into the mix, and there is a whole new dimension to it. With the service industry growing exponentially, the job market is evolving to select for outgoing, socially skilled workers. This makes it drastically more difficult for autistic adults to provide for themselves and live fulfilling lives.

Not only have I been autistic in a neurotypical, capitalist world all my life, but I have been female all my life. While I struggled to fit in, I was also institutionally pressured by patriarchal social values to conform to female gender norms. In consequence, autistic women are criticized much more harshly than their male counterparts regarding social behavior. We don't have the privilege of being excused for our social missteps because of our autism the way men often are, and it's a larger problem than you'd think.

Consequently, female autistic voices have been silenced and forced out of the autism narrative. This is unacceptable. The future of autism awareness must be about providing autistic women opportunities for their voices to be heard while simultaneously holding men (autistic men included) accountable for the way they so often push us aside. In a world that grows more and more tolerant, we need to be vigilant not to leave the underrepresented behind.

So, this is me saying I exist, I'm a woman, and I am autistic.

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The invisible oppression of the autistic female

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When I was in the 3rd grade, I befriended a boy who joined our class halfway through the year. He had a difficult time fitting in, to say the least, but I had always been the type of kid to embrace others eagerly. We became fast friends, our favorite pastime being movie talk.

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ASAN November Newsletter Dear friend, As we've begun wrapping up the year, we're still hard at work here at ASAN! We've celebrated self-advocacy and looked back at the work we've done this year, and we've continued to work on the issues to come! Earlier this month, we celebrated ASAN's birthday at our 2023 ASAN Gala,...

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The Autistic Self Advocacy Network is a national grassroots disability rights organization run by and for Autistic Americans, advocating for systems change and ensuring that the voices of Autistic people are heard in policy debates and the halls of power. Our staff work to educate communities and improve public perceptions of autism. As a 501(c)(3)...

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ASAN October Newsletter Dear friend, It's the most boo-tiful time of year, but we're still fighting some of the scariest things our community deals with, like discriminatory health care systems, subminimum wage, and lack of supports. Here's what we've been working on this month. In September, the Department of Health and Human Services (HHS)...

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NOTE: There is a perception that I am some kind of "Social Model" fundamentalist against the "Medical Model". Those who read my book know that I critiqued aspects of both, and I am for striking a balance between the two extremes.

CONTENTS

Please scroll down to find

1. The Minimalist Definition
2. A more detail definition
3. Indepth discussion of concept

Apologies if there are overlaps or even contradictions between the 3 sections as this is an ongoing work. The Minimalist definition contains my latest thoughts, in response to some critiques that I have not made the distinction between ND as Biology and ND as Sociology clear.

MINIMALIST DEFINITION

Prerequisite knowledge

Diversity (n): a measurement of the the degree of variability in a specific location

Neuro- (prefix): of the nervous system

Biological: Brain, Spinal Cord and Nerves

Socio-Biological: a complex continuously evolving system influenced by external sensory input: perception and learning

A biological truism that refers to the limitless variability of human nervous systems on the planet, in which no two can ever be exactly alike due to the influence of environmental factors

Usage

encompasses ALL Humanity

is an advocacy term to name the Neurodiversity Movement, a civil rights movement for psycho-medically labelled minorities and their allies

is a category of the intersectional factors that define advantage or disadvantage that

Misusage:

Does not mean "Neurological Disability" or "Otherness"

Is not a diagnosis

Is not a descriptor of genomes

Literally, the term refers to all beings with a nervous system, but since I coined it for a human rights advocacy purpose, I limited it to Homo Sapiens. The term Biodiversity covers the rest.

Preferably don't use it. Use Neurodivergent/Distinct/Minority etc.

Neurodiverse is literally an "unreal word" in the same sense as an "unreal number", since every location that has more than one individual in it is "Neurodiverse".

However since the word has been widely adopted as an identity, and has no other usage, and people who identify thus find it useful, I reluctantly accept this usage

Misuse

Does not mean "Neurologically Disabled"

Neurominority (noun or adj)

Neurominority is my preferred term for people with medically labelled conditions, since Neurodiversity names an activist concept. Using the minority label prevents the movement being reabsorbed into the ownership of the Psycho-Medical Complex

The Neurodiversity Movement

Is a continuously evolving public discourse, discussion or debate that aims to improve the status of Neurominorities. Anybody who engages in the discourse, whether they are "For" or "Against" the Movement ARE the Movement

The Movement has achieved massive social change without a central organisation, a hierarchical leader or an official spokesperson.

Inevitably we are seeing the rise of business entities who have attempted to claim a global leadership role within the movement. They are also part of the movement but I urge scepticism in another article of my blog titled: Is the Neurodiversity Movement being colonised?

There is no place for the words "Normal" or "Natural" in definitions of Neurodiversity because:

"Neurodiversity" is simply an authoritative-sounding synonym for ALL "Humanity". We are clearly all a part ot Nature. The word Natural is redundant.

d as "red in tooth and claw", which weeds out anything that can't adapt to its environment. Humans are not inherently good: the dark triad of Psychopathy, Narcissism and Sadism are also part of Humanity and therefore Neurodiversity. It is humans who are moral, and it is our duty to create a benevolent niche for everybody. That is where the Despite the good intentions of Neurodiversity activists, Natural does not mean"Benign" or "Good".
This is absurd. Nature is an amoral agent sometimes describe Neurodiversity Movem

The word "Normal" evolved from Eugenics to separate Normal "Us" from Abnormal"Them". Its intent is pejorative.

How to cite the concept

The term Neurodiversity was first theorised and published in a 1998 Sociology Honours thesis presented to the University of Technology Sydney (UTS) by Judy Singer who identified as being "being the middle of 3 generations of women on the Austistic Spectrum". The thesis, was based on her participant observation of online egroups within the Autistic Self-Advocacy Movement. It had the title
The Birth of Community Amongst People on the "Autistic Spectrum" A personal exploration of a New Social Movement based on Neurological Diversity
More detailed definition

What Neurodiversity is

Neurodiversity is a subset of Biodiversity

Just as Biodiversity refers to ALL the species in a specific location or ecosystem, Neurodiversity refers to ALL Humans (the species Homo Sapiens) in a specific location, the Planet Earth.

Just as Biodiversity was coined for a political purpose, to advocate for the conservation of the environment, I intended the term Neurodiversity specifically for an advocacy purpose:

Implicitly to suggest a Banner or Umbrella term for an emerging Human Rights Movement based on the pioneering work of the Autistic Self-Advocacy Movement which was being joined by other Neurological Minorities with medically-labelled conditions such as ADHD, the "Dys"abilities andTourette's Syndrome .

To add Neurodiversity to the intersectional categories of Class, Disability, Ethnicity, Gender, since Disability" was limited inadequately to "Physical Disability, Intellectual Disability" and "Mental Illness".

What Neurodiversity is NOT

Neurodiversity is NOT a synonym for "Neurological Disability".

Neurodiverse refers to a place, not an individual.

Since "Diversity" does not mean "Disability"

Some advocates want to insist that an individual can be neurodiverse in themselves, because they have different tendancies. This is also absurd unless they have more than one individual nervous system in their bodies. And also it would be a reversion to the medical model of disability.

Caveats

If a member of the general public wishes to call themselves "neurodiverse", they should not be corrected. But professionals and academics should get this right. Please read the indepth discussion below.

In my thesis, I made clear that I was only referring to what was then known as Asperger's Syndrome, as I had no experience of Classical Autism.

In retrospect, I realise that Aspergers Syndrome shades from an Identity to a Disability. I believe the blame for the current "Autism Conflicts" rests on the shoulders of the powerful American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, (DSM V) for its fiat of rolling the two together without listening to the objections of either the Aspergers or Autistic Communities.

Spurred by the environmental disaster of Australia's bushfire season, and now by the coronavirus pandemic, I have updated my concept of Neurodiversity to emphasise its place within Biodiversity.

In times of loss of diversity, threat of economic collapse, and increased competition for scarce resources, we need a strong argument against a primitive "survival of the fittest" fortress mentality against "outsiders", however they are defined.

Until recently, the sanctity of all human life in Western culture was underpinned, however imperfectly, by Judaeo-Christian belief in divine command.

With belief in divine authority waning, we need a convincing new argument for the sanctity of all lives to counter the inhuman logic of economic rationalism which forever teeters over an eugenic abyss.

But first, what is Diversity anyway?

It is surprising difficult to find a definition of the concept of Diversity, let alone Neurodiversity. No wonder the public is confused

It all becomes much clearer when you realise that Diversity is a measurement of the degree of variability of a given variable in a given population or place

It is NOT a characteristic of the individuals in that population

It is measured by terms like high/medium/low degrees of diversity. Think Rainforest/ Desert/ Planet/ City/ Nation etc

The elements can be anything that varies: flora, fauna, objects, humans

Neurodiversity is thus a property of the human population of Earth

While Neurodiversity itself is just an indisputable fact about the planet, the Neurodiversity Movement is something else again.

It is built on the idea that just as conserving biodiversity is necessary for a sustainable, flourishing planet, so respecting neurodiversity is necessary for a sustainable, flourishing human society.

Neurodiversity is a subset of Biodiversity

is a feature of Earth and its ecosystems

refers to the total diversity of species that inhabit the planet or its local ecosystems

was coined in the 1980s as a political term to argue for the conservation of species

Biodiversity

Both are descriptors of environments and not of individual species, of which humans are just one

is a feature of Earth as a whole, since humans have colonized all Earth's ecosystems

refers specifically to the limitless variability of human cognition and the uniqueness of each human mind

was coined, I believe, by myself in the 1990s, as a political term to argue for the importance of including all neurotypes for a thriving human society

Is Neurodiversity a scientific term?

No, it's a political term

Some critics of the Neurodiversity movement like to scoff that "Neurodiversity" is not a scientific term. It should be clear from the above that it was never intended to be. It simply names an indisputable fact about our planet, that no two human minds are exactly alike, and uses it to name a paradigm for social change.

My idea was based on a recognition that the Autistic Self-Advocacy Movement was shaping up to be the last great identity politics movement to emerge from the modernist era. I hoped it would follow in the footsteps of the Women's and Gay/Lesbian Movements. What all these movements had in common was that their members were misunderstood, devalued and treated as second class citizens at best. At worst, villified and abused. The Womens and Gay Movements had changed the world, and now it was the turn of people "on the autistic spectrum". At the same time, it was clear that other groups of people with, as far as I knew then, ADHD and the "Dys"es, were also in the same boat, and new coalitions were bound to emerge. The new movement I imagined would need a catchy name. My thesis was subtitled "A personal exploration of a new social movement based on Neurological Diversity" But "The Neurological Diversity Movement" was too much of a mouthful. That's when I had an Aha! moment: Why not "A Neurodiversity Movement"?

I did not actually use the exact phrase as I never dreamed the idea would take off. But it is clear from what I wrote below that I intended the word to be added to the categories of what we now call "Intersectionality", or the intersections of class, race, gender and disability. Intersectionality itself is a tool of social analysis.

an addition to the categories of intersectionality
thus an analytical lens for examining social issues such as inequity and discrimination

an umbrella term as a possible name for a civil rights movement for the neurological minorities beginning to coalesce around the pioneering work of the Autistic Self-Advocacy Movement

In summary, my original conception of Neurodiversity was as

"Neurodiversity" is NOT a diagnosis!

Every heard the phrase "People with Neurodiversity"? About as absurd as "Josephina Bloggs has come down with a bad case of Neurodiversity", Just don't.

"Neurodiverse" is NOT a diagnosis either

We are ALL Neurodiverse because no two humans on the planet are exactly alike

Our planet has a neurodiverse populationIf you are an employer, for example, you can talk about a neurodiverse environment eg. a workplace or team, if you mean that you consciously seek to increase the neurodiversity of your workplace, because it makes good business senseBut you can't say that Worker A is "neurodiverse" while Worker B is not.

However, if Worker A has identified themselves with a specific syndrome, e.g. Autism, they can be called "autistic". But they are no more neurodiverse than anyone else on the planet

Do not use Neurodiversity as a scalpel
for dividing "Us" from "Them"

is an umbrella term used to advocate for the common interests of various neurological minorities, as were originally described and differentiated by the 20th century Psycho-Medical Complex

The movement grew out of the pioneering work of the Autistic Self-Advocacy movement and its allies

It is an evolving, decentralized and leaderless social movement

The idea of a NeuroDiversity Movement is a memetic phenomenon, a cultural idea that is reproduced virally by the action of all those who engage with the concept. This includes those who speak out against it - whether they like it or not! To understand why, see Richard Dawkins' original Meme Theory
The movement's aims evolve dialectically, that is, its boundaries are fuzzy and represent the locus of debate and discussion by those who engage with it

Despite there being no official definition or spokesperson for the movement, its consensual aims can be discerned. They are to:

shift mainstream perceptions of marginalized NeuroMinorities

replace negative, deficit-based stereotypes of NeuroMinorities with a more balanced valuation of their gifts and needs

find valued roles for neurologically marginalized people

show that all society benefits from the incorporation of NeuroMinorities .

is a term that refers to an obvious and indisputable feature of Earth's biosphere

Neurodiversity refers to the virtually infinite neuro-cognitive variability within Earth's human population. It points to the fact that every human has a unique nervous system with a unique combination of abilities and needs.

the greater the biodiversity within an ecosystem, the more stable, adaptable and sustainable

ecosystems are interlinked in complex ways that affect all life, including human life

It follows that the more Neurodiversity is respected and facilitated within a culture, the more stable, adaptable and sustainable that culture is

The term Neurodiversity in its political form caught on because it captures the authority of both environmental science and neuroscience to replace the purely negative and unbalanced characterization of neurological minorities by the 20th century Psycho-Medical Complex

Neurodiversity pertains to the planet, but morality pertains to the human mind. It behoves us to look deeply and thoughtfully at ourselves and others.

Neurodiversity changes nothing about Human Nature but gives us a new lens for examining it

Neurodiversity as a conservation issue

It is important to locate Neurodiversity within the wider picture of Biodiversity

Why is biodiversity important?

Biodiversity refers to the incalculable variety of life on Earth and its ecosystems and habitats. A high level of biodiversity within an ecosystem is considered desirable and necessary for an ecosystem to thrive. The term was coined with a political aim, the conservation of all species not just those species that humans value.

From a purely selfish anthropocentric viewpoint,

Why is Neurodiversity important for all humanity, not just for neurodivergent people?

As a subset of biodiversity, Neurodiversity is as important for a viable culture as biodiversity is for a viable ecosystem.

Any reduction of biodiversity results in a less stable and self-sustaining environment. Complex ecosystems are self-healing over time, being able to select from a vast diversity of genes. But the phenomenon of desertification shows that there is a tipping point beyond which there is no return.

Consider the risks and benefits of human-imposed monocultures in agriculture. Yes, there are efficiency to humanity in efficiency, but consider the maintenance costs: disease, pests, degradation of soil, and constant labour and vigilance.

Obviously a human monoculture is not about to emerge any time soon. It's not technologically feasible, although it cannot stop the march of science, whether we like it or not.

The dream of some for a genetically engineered cure for autism is unlikely to happen - the condition is simply not down to a single set of genes.

The more sinister dream is a totalitarian Social Darwinist vision (based on a misconception of evolutionary theory) which seeks to minimize or even extinguish human diversity. It manifests as:

Racism: the dream of excluding minority ethnic groups from equal opportunity and power, and ultimately of enslaving and even annihilating them

Sexism: the dream of excluding women from equal opportunity and returning them as men's handmaidens

Homophobia: the dream of reverting to an imagined state of nature in which only heterosexuality exists

Eugenic euthanasia: the dream of eliminating disabled people

Ideological censorship: the totalitarian dream of eliminating diversity of opinion

Germany's Nazis turned Europe into a laboratory of evil for a monstrous "Social Darwinist" experiment by trying to turn this fantasy into a reality and create an Aryan Master Race. In the end, it rebounded on Germany. Nearly as many "Aryans" ended up dying as the Jewish and Rom peoples that the Nazis had tried to exterminate (the Nazi's shameless word, not mine).

Slight divergence: Have we learned anything from this? Or are our means simply becoming more subtle? Are cutbacks in welfare for minorities a back-door form of genocide by neglect? But that's a topic for another article...

Neurodiversity as a Conservation issue?

I developed the term Neurodiversity for a political purpose, which I now see in more broad conservationist terms than the identity politics terms I originally thought of. I have written elsewhere about the limitations of Identity Politics beyond its initial consciousness-raising phase.

In biological terms, Neurodiversity is about the conservation and revaluing of neuro-cognitive minorities within the planet's dominant species, Homo Sapiens. The Latin derivation of Homo Sapiens is "Wise Human", affirming that what differentiates humans from other species is the possession of a highly developed brain

In order for a species to flourish, we must protect its habitat. Even more so for endangered species, which need extra resources to regenerate their habitats and may need individual support.

Similarly, in order for humanity to flourish, we must protect and create safe habitats for minority cultures, whether indigenous, displaced, disabled, impoverished, queer, aged and so on. For disability and neurological minorities, additional resources must be supplied from the taxes of the majority so that neuro-minorities can flourish and make their contribution to society.

Nature is beautiful but also "red in tooth and claw"

The Dark Side of Neurodiversity

Nature may be beautiful but it is amoral.

Nature simply generates variety. It is a given habitat which determines whether an organism will find its niche and thrive, survive or perish in that habitat.

Not all mutations are positive. Nature will rapidly eliminate any mutation that doesn't fit its habitat.

Similarly, Neurodiversity is a positive principle, but it is NOT a moral principle.

It has nothing to say about Good vs Evil, Fit vs Unfit, Different vs Disabled

In nature, things either survive to pass on their genes, or they don't.

We should not be blind to the reality that Neurodiversity includes anti-social categories like the "Dark Tetrad": Psychopathy, Narcissism, Machieavellianism and Sadism. In certain situations, and within limits they have social value, boldness, confidence, will to achieve, but they confer an unfair advantage for those who are able to charm, beguile and hide anti-social, self-aggrandizing aims,

If we are going to create Neurodiverse Workplaces, it includes a responsibility to assess such behaviours which are often found in people in leadership positions, to ensure that all are protected from the negative aspects.

Sure, there is a niche for everyone, but for some it must be protective custody, though much more humanely administered than our current penal systems

If some of this is beginning to sound like an argument for eugenics, don't panic! Read on and find out why not.

Neurodiversity and Eugenics

While Nature is amoral and red in tooth and claw, human civilization is not.

However clumsily, Homo Sapiens continues to evolve towards true wisdom, which at heart is ethical and just. Civilization depends on it. The horror of the Nazi holocaust against ethnic and disabled minorities, which ultimately consumed even mainstream Germans, taught us that we will destroy each other if we choose to eliminate rather than accommodate ALL humans.
Fortunately, as a species, we have a genius for
Therefore it is society's responsibility to provide a niche for all humans, not just as a matter of ethics, but also of self-interest, as attested by the powerful post-war German poem, "First they came...''.

creating new niches, new spaces and new ideas.

For those who must see things in economic rather than moral terms, it is to our economic benefit to create spaces where disabled people can flourish. This is an economic activity which creates jobs and wealth for all the caring professions and all those who support them - the administrators, the designers, and so on.

At the same time, we all have the responsibility of restraining our excessive consumption "to live simply so that others may simply live".

An afterthought: Neurodiversity and Difference vs Disability.

Early commentators have urged me to say something about this vexed question

As I noted above, Nature, or Neurodiversity doesn't distinguish between Difference and Disability. That is a human concept, within a specific cultural context.

Indeed, the notion of "Disability" as it is currently understood is an artefact of western welfare systems. Is is a means of separating The Worthy Poor (those classified as disabled by the medical profession) from the The Unworthy Poor (those without a diagnosis). Those considered worthy then may get a dole, while the unworthy are punished and frequently vilified. This goes deep. Even today, while society has evolved to the point where we rightly condemn vilification of ethnic, gender, and disabled minorities, it is always open season on "The" Unemployed.

This word Disability is tricky! And has many different definitions depending on who you ask.

Ask yourself what you mean by it before condemning other people's opinions. Do you mean the Welfare System's definition? Do you mean your personal experience of disability? Are you differently affected depending on whether you are poor, breaking even, or wealthy? Are you talking about pain and suffering? Are you talking about time you have to give up from other pursuits as a carer? You can think of other questions.

The future of Neurodiversity

Neurodiversity has been a world changing idea. It will continue to be of importance as long as Neuroscience is considered the ultimate authority on the capabilities of the human nervous system, and as long as we retain an environmentalist perspective on the importance of diversity.

Its meaning will continue to evolve as part of a dialectical process of change. Any world-changing idea (thesis) will be incomplete, will polarise people, will engender opposition and critique (antithesis). This is a good thing. After all the debate and discussion, a new synthesis will emerge, which will then be further refined and so on...

If you are reading this, you are creating the future of Neurodiversity

Note for readers and commentors

Science and social science progress through critique and the dialectic process. I value and am stimulated by constructive criticism. This is a work in progress, somewhat like life itself, and my ideas are constantly evolving. If you have constructive suggestions and criticisms I would love to hear them, either here o on twitter @singer_judy

Please share and discuss on social media if you value this work

Given limited time and energy, I regret I may not be able to respond individually.

Attributions and Copyright

All other images by me including remixes of the above are licenced thus. It basically means you can share them and adapt them but you must attribute me, and use the same Creative Commons Licence

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Neurodiversity Official Definition by Judy Singer

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Clearing Up Some Misconceptions about Neurodiversity

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Clearing Up Some Misconceptions about Neurodiversity

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To my dismay, Simon Baron-Cohen's recent article " The Concept of Neurodiversity is Dividing the Autism Community " perpetuates a common misunderstanding of the neurodiversity movement: that it views autism as a difference but not a disability. Baron-Cohen presents the issue as one of opposing sides: the medical model, which sees autism as a set of symptoms and deficits to be cured or treated, and the neurodiversity model, which he believes ignores any disabling aspects of autism. Unfortunately, this confuses the neurodiversity movement with the social model of disability, and it is an incomplete understanding of the social model at that.

Before I go into details, let me summarize what the neurodiversity movement does believe:

Autism and other neurological variations (learning disabilities, ADHD, etc.) may be disabilities, but they are not flaws. People with neurological differences are not broken or incomplete versions of normal people.

Disability, no matter how profound, does not diminish personhood. People with atypical brains are fully human, with inalienable human rights, just like everyone else.

People with disabilities can live rich, meaningful lives.

Neurological variations are a vital part of humanity, as much as variations in size, shape, skin color and personality. None of us has the right (or the wisdom) to try and improve upon our species by deciding which characteristics to keep and which to discard. Every person is valuable.

Disability is a complicated thing. Often, it's defined more by society's expectations than by individual conditions. Not always, but often.

The social model of disability comes from the field of disability studies. It says that a person is "disabled" when the (societal) environment doesn't accommodate their needs. An example: in a world where ramps and elevators are everywhere, a wheelchair user isn't "disabled," because he/she/they can access all the same things as a person who walks: schools, jobs, restaurants, etc. However, providing equal opportunity doesn't mean ignoring the differences and difficulties a wheelchair user may experience.

In the 2004 article " The Right Not to Work: Power and Disability," Sunny Taylor explains: "The state of being mentally or physically challenged is what [disability theorists] term being impaired; with impairment comes personal challenges and drawbacks in terms of mental processes and physical mobility.... Disability, in contrast, is the political and social repression of impaired people. This is accomplished by making them economically and socially isolated. Disabled people have limited housing options, are socially and culturally ostracized, and have very few career opportunities."

Few (if any) neurodiversity advocates deny that impairments exist in autism. Or that some impairments are more challenging than others, with or without accommodations. We, like Baron-Cohen, hope to solve the health struggles that often come with autism, such as epilepsy and digestive issues. But while these are more common among autistic people than nonautistic (or "neurotypical") people, they aren't actually symptoms of autism.

And culture affects these things, too. Depending on time and place in history, epilepsy could make a person a respected shaman or suspected of demonic possession. Gluten allergies are much easier to accommodate now than they were 20 years ago before food companies started offering gluten-free options. If wheat and rye went extinct, gluten allergy would never be a disability again!

When we talk about "not pathologizing autism," we don't mean "pretending autistic people don't have impairments." But we also don't assume that neurological and behavioral differences are always problems. For example, there's nothing inherently wrong with disliking social activities. Not wanting to socialize is different from wanting to participate and being unable to. Both are possibilities for autistic people. One requires acceptance, the other requires assistance. Sadly, I have yet to meet a therapist who doesn't treat the two as equivalent and in equal need of correction.

While there is a lot of overlap with the social model, the neurodiversity approach is primarily a call to include and respect people whose brains work in atypical ways, regardless of their level of disability (I will focus here on autism, but neurodiversity is about "all kinds of minds"). This requires challenging our assumptions about what's normal, what's necessary and what's desirable for a person to live well. Of course, better accommodations and reduced stigma would improve our lives immensely. But so would a broader definition of a meaningful life. As Taylor puts it: "Western culture has a very limited idea of what being useful to society is. People can be useful in ways other than monetarily."

The neurodiversity movement believes in giving autistic people the tools to succeed in the workplace, but not shaming or pitying those who will never be financially (or physically) independent. We believe that a person who needs lifelong care can also be happy and reach personal goals. Taylor adds, "Independence is perhaps prized beyond all else in this country, and for disabled people this means that our lives are automatically seen as tragically dependent."

But is independence really about being able to brush your own teeth, or is it more about being able to choose your own friends? Disability theorists and neurodiversity advocates think the second is far more important. Most therapies, however, teach only concrete practical skills, not personal empowerment.

When we say "Autism is just another way of being human," we mean that profound impairments don't change a person's right to dignity, to privacy and to as much self-determination as possible, whether that means choosing their career or choosing their clothes. I cringe to see how often autistic people get videoed at their worst, without their consent, and broadcast on the internet for the world to see. You would probably be furious if someone did that with your moments of deepest personal struggle! The fact that these kids (and adults) can't speak up doesn't mean they're okay with it. Inability to answer is not consent. Additionally, autistic children are regularly subjected to therapies that teach them to hide their discomforts, stifle their personalities and be more obedient (or "compliant") than their neurotypical peers, putting them at increased risk of bullying and sexual abuse.

Respecting neurodiversity means respecting nonverbal choices, even when those choices are "weird" or "not age-appropriate." It means respecting the word "no," whether it's spoken, signed, or shown by behavior. It's giving the same attention to a person using an AAC (augmentative and alternative communication) device that we give when a person speaks verbally. It's understanding that muting an AAC device is the moral equivalent of taping over the mouth of a child who communicates by speaking. It means not using high-pitched baby talk with a 10-year-old, even if that 10-year-old still wears diapers and puts sand in his mouth. It's never letting a child overhear herself described as "such hard work" or "a pity" or "a puzzle" or "so far behind," no matter how little she appears to understand. Inability to respond doesn't mean inability to comprehend, as we've heard many times from self-advocates like Carly Fleischmann and Ido Kedar.

Baron-Cohen mentions "social difficulties" as a disability in autism, and for many autistic people, their social struggles are indeed disabling. But that's an incomplete picture. Some autistic people genuinely prefer their own company. Many autistic people socialize better with other autistic people than with typical peers, so perhaps we shouldn't judge their social skills solely on their interactions with neurotypicals. And, perhaps most importantly, one of the biggest social difficulties faced by autistic people is neurotypical people's reluctance to interact with those they perceive as "different."

That's a social problem caused for autistic people by nonautistic people, not a social disability in autism. Asking only autistic people to change how they socialize is like asking minorities to speak and dress more like white people in order to be accepted. That's a really bad way to combat prejudice, racial or neurological.

More people now use the language of neurodiversity, talking about accepting and supporting autistic differences. Unfortunately, however they phrase it, most autism therapies still uphold "more typical behavior" as the gold standard of success. Even though numerous autistic adults warn that the strain of faking normality often leads to depression, burnout and even regression later, years after the therapy was declared a success. Respecting neurodiversity means not insisting on eye contact, when autistic people have stated (over and over and over) that eye contact is so hard, so overwhelming and so stressful that it destroys their ability to pay attention.

The same goes for "quiet hands" or any time an autistic child is forced to act more typical at the expense of energy they need for intellectual development or personal growth. Studies are finally confirming what autistic people have said for decades: we get better outcomes when it's the caregivers rather than the children who are taught to behave differently. It's tragic how often the autistic viewpoint is ignored by researchers and therapy companies.

Thinking in terms of neurodiversity means challenging the assumption that pretend play is necessary just because it's what neurotypical children do. While typical children learn with a hands-on, stepwise approach, many autistic children learn best by observing for a long time before trying a new skill. Just as visual learners or auditory learners should be allowed to use the learning method that works best for them, so too should autistic children. We should respect that they usually learn things in a different order than typical kids do, and stop tracking their progress on neurotypical developmental timelines.

I'm a respite carer. I've had clients on the spectrum (and with other developmental disabilities) from ages four to the early 20s. Many are nonverbal or minimally verbal. I believe all are intelligent in their own ways, even if they have intellectual disabilities. I have clients who melt down or blow up. I sympathize with their frustrations. I have clients who bite themselves or me. I'm certain that they never do so without reason. I have clients who communicate with single words, apps, drawings or simply pulling me to what they want. I don't want to change their communication style; I want to learn it like a second language. I have clients who will "pass" as nonautistic, and clients who will probably never live on their own. I make no assumptions about who will have a more fulfilling or enjoyable life.

There are struggles that come with being far from "normal" and struggles that come with being almost "normal"-not to mention, typical lives are hardly free of challenges! Struggle is part of everyone's life, not just disabled people's. Many of us assume we know what a good life looks like, but we're very limited by our own experiences. A good life means different things to different people. Just ask a Syrian refugee and a New York socialite what they need to be happy.

My clients are complicated, just like all human beings. I have clients who do gross and socially inappropriate things in public. If I am embarrassed by their actions, that's my problem, not theirs. I have clients who gently stroke my hair with shaky hands, who silently share their favorite foods with me, who flap and jump and screech with excitement when I arrive at their door. I wouldn't trade their flapping hands and shining eyes for anything in the world. Their very existence is beautiful.

My clients usually have impairments. My clients are often disabled. My clients are all cool and interesting people. Some of my clients notice things others miss. Some communicate eloquently without language. Some make jokes using only one or two words. Some have skills in memory, engineering and music that make me envious. You might be very surprised by which descriptions belong to which clients.

Respecting neurodiversity means challenging assumptions about what intelligence is and how to measure it. It means reminding ourselves that just because a person can't speak doesn't mean they aren't listening. It means not asking someone to prove their intelligence before talking to them in an age-appropriate way or offering them intellectually stimulating opportunities. It means remembering that there can be a huge disconnect between mind and body, and that a person's actions may not reflect their intentions, especially when they are overwhelmed or upset.

Respecting neurodiversity means the professional community needs to apologize for decades of mistakenly insisting that autistic people lack emotions or empathy, and for all the harm, both physical and psychological, that has been done to autistic people (and is still being done) because of those errors made by neurotypical observers. It means asking whether some "weaknesses" are really strengths in disguise. It means always asking "Is this activity/skill/behavioral goal actually necessary, or just normal?" and "What can we adults do differently so our kids don't have to?"

I suspect parents are thinking, "But I have to teach my child how to get along in this world! I might be willing to change for them, but other people won't." Yes, you can work to teach your child the rules of your society, without letting those lessons take over their life. Children at school have to raise their hands and wait to speak, but we don't require this at home. Practicing an instrument is exhausting, so we don't ask young children to do it for hours at a time. Treat "acting normal" the same way.

It's work, and hard work at that. Don't ask for it all the time. Acknowledge that it's usually difficult and sometimes downright painful. Ask yourself what you'd allow done to a nondisabled child. Would you let a therapist physically restrain her for biting her nails? Hide his favorite food until he cooperates? If it's not okay for a neurotypical child, it's not okay for an autistic one.

Respecting neurodiversity means listening to autistic adults and taking them seriously when they tell us that the psychological cost of fitting in usually outweighs the benefits. It means accepting that some kids will learn to write but never talk, or will always understand music better than manners, or will never have an interest in sports, or don't identify with a binary gender; and that there is room in this world to appreciate and celebrate all these individuals for who they are, regardless of how much help they need. Doing so makes their world, and ours, a better place.

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Clearing Up Some Misconceptions about Neurodiversity

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To my dismay, Simon Baron-Cohen's recent article " The Concept of Neurodiversity is Dividing the Autism Community " perpetuates a common misunderstanding of the neurodiversity movement: that it views autism as a difference but not a disability.

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Autistic People & Empathy: What’s The Real Story?

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Autistic People & Empathy: What’s The Real Story?

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By Helen Wallace-Iles

So many of the general public believe that autistic people don't feel empathy towards others, so this post is designed to help set the record straight.

First of all, what is empathy? Quite simply, empathy is the ability to understand what another person is thinking or feeling; but the truth is that empathy is anything but simple.

Autistic people can definitely struggle with certain aspects of empathy, but that doesn't mean they don't feel it at all. Sadly, despite years of campaigning by autism advocates, there's still a widespread belief that people on the spectrum have no ability to make emotional connections or form meaningful relationships, and this really couldn't be further from the truth.

Autistic people are often the most kind-hearted, compassionate individuals you'll ever meet. Deeply committed to their family and friends, with an intense spiritual connection to the world around them, they really are nothing like the stereotypical, emotionless loners they're sometimes portrayed as in the mainstream media.

However, like all stereotypes, this one has its roots in reality, and has come about as a result of the complex nature of autism, and the equally complex nature of empathy. This post describes the three main aspects of empathy - affective, cognitive and compassionate - and how autistic people can both struggle with and excel at processing and expressing them.
Affective Empathy
This is an unconscious, automatic response allowing you to feel what other people (and other living beings) are feeling, and is absolutely not something autistic people lack.

For example, it's very common to find people on the spectrum who feel intensely connected to all species of animals, birds, insects etc. and the bonds they form - with creatures who live free from the endless restrictions of human social rules - can be quite extraordinary.

In the case of affective empathy, rather than having too little, autistic people can often have way too much - a condition known as 'hyper-empathy.'

Hyper-empathic people find that even the thought of anyone or anything suffering causes them intense emotional, psychological and often physical pain. They can be highly sensitive to any changes in atmospheres, picking up on the slightest tension between people, and becoming more and more upset as they anticipate things escalating.

Since processing these powerful feelings can be really hard for them, they'll often withdraw or go into meltdown over something that's perfectly valid to them, yet a complete mystery to those around them.

Another way this shows itself is in the extreme personification of objects: forming deep emotional bonds with everyday items like pencils or rubber bands.

There are many examples of personification in the language we use every day (time waits for no-one/the camera loves her etc.) and also in our culture, with films such as Beauty and the Beast being very much enhanced by its singing, dancing, emoting kitchenware, but what I'm describing here is something much more overwhelming. Autistic people can become extremely upset if they feel, for example, that a specific crayon or hairbrush isn't being used as often as the others, because it might be feeling left out. I can imagine how that sounds to anyone who's unfamiliar with autism, but believe me, to many, many autistic people, this really does make perfect sense.
Cognitive Empathy
This is the largely conscious ability to work out what other people are thinking or feeling, and because human beings are so endlessly complex, If you're not naturally wired to understand the process, it can be really, really difficult to learn. Cognitive empathy is an intricate thought process allowing you to grasp what people really mean when they say something vague, or which emotions they're feeling when they behave in a way you find confusing. It's something most neurotypical people pick up very quickly, and most autistic people have to work really hard at.

Anyone who lives with autism (whether they're autistic themselves or are in close contact with an autistic person) will recognise how difficult it can be for people on the spectrum to guess other people's behaviours and intentions without very precise instructions. In other words, it really helps to say exactly what you mean when you talk to autistic people, because they just don't get the concept of 'implied.'

A perfect example of this happened in here recently, when my youngest son's girlfriend told him 'I've just left work; meet me at the end of the road.' Now, it was clearly implied that since she'd just stepped out of the office, she wanted to meet him at the end of the road she works on, but since Aidan doesn't do 'implied,' there she stood, more than twenty minutes later, still waiting for him to arrive.

Aidan, meanwhile, was waiting at the end of the road where she lives, which seemed to him to be the most logical road to meet on, since they'd met there several times before. Not specifying a particular road when talking to an autistic person is what we call in here a 'rookie mistake!'

There are a couple of terms relating to this that you've probably come across if you're part of the autism community: The ability to consciously recognise what other people are thinking and feeling is known as 'the Theory of Mind' (usually abbreviated to ToM); while being unable to do this is known as 'Mind-blindness'. Mind-blindness is one of the most common traits a health professional will look for during an autism diagnosis, and its effects very much work both ways.

Autistic people will often assume everyone has the same views and understanding of the world as they do, as well as the same passions and interests. I'm sure many of you are familiar with the seemingly endless discussions about special interests which are a direct result of this trait.

They'll also believe that if they're aware of something, other people must be too, and this can lead to all kinds of problems. When my son Dominic was young he almost died of acute double pneumonia because he didn't tell us he was in agonising pain whenever he coughed. Devastated, I asked him why he hadn't mentioned it to me, and he said simply 'I thought you knew.'
Compassionate Empathy
This is both the understanding of another being's situation, and the motivation to help them if they're in some sort of trouble. Once again, autistic people have no shortage of this kind of empathy, even though they can sometimes struggle when it comes to offering the right kind of help.

Many people on the spectrum are hugely motivated when standing up against what they consider to be injustice, and you'll find some of the most passionate voices in the struggle for equality, animal rights and a cleaner environment are the autistic ones.

Autistic people see far less boundaries than neurotypical people do, which is a really positive trait when it's applied to finding new solutions to seemingly unsolvable problems. Conversely there are many challenges for autistic people to master when it comes to giving and receiving emotional support, as they tend to struggle quite a lot with social boundaries.

Autistic people often don't like to hug, or they hug too tightly, which is a natural way for neurotypical people to show empathy towards each other, and this definitely adds to the misconception that they're unfeeling and lack the capacity to love. Putting your arm around someone's shoulder or your hand on their arm when they're sad are both automatic gestures for neurotypical people to make, but can be incredibly confusing for autistic people who have difficulty picking up social cues about how much physical contact is appropriate in each particular situation.

When you're autistic, joyous occasions such as birthday parties and weddings can be just as difficult to navigate as the more emotionally draining events like funerals. Understanding why it's important to 'say the right thing at the right time' can be very confusing, leading to all sorts of mix-ups, but autistic people really do care, and are genuinely trying their best to be supportive, even when they get things wrong.

So those are the basics of empathy, and some of the struggles autistic people can have with them. I'll leave you with a real-life example of one man's version of compassionate empathy which I'm sure many wives of autistic husbands will recognise.

For several years I'd been dogged by some very serious injuries and illness, and had put on quite a bit of weight as a result. We were going out for the day so I squeezed myself into a pair of jeans I hadn't worn for a really long time. They just about fitted but to be honest I wasn't too sure about wearing them in public. I told my husband I felt a bit uncomfortable about how my legs looked, and rather than the standard 'You always look beautiful to me, darling' reply I'd expected, he spent way too long staring at my thighs and came out with the ever-so-helpful statement 'Yes, they are pretty big. I know! Just wear a long coat.'

Yes, thank you for that, darling; problem solved. Sigh.

***

Helen Wallace-Iles has lived with autism all her life and is now the very proud mother of four remarkable children on the spectrum. She is a fully qualified hypnotherapist and psychotherapist who has supported hundreds of families through the difficulties of living with this complex and intriguing condition.

Helen now works full time running the charity she founded in 2010, Autism All Stars Foundation UK, where she promotes a positive, proactive approach to life and particularly to living with autism, something which shines through in her hugely popular book 'The Ringmaster's Tale: Autism, Asperger's, Anarchy!' - available here: www.tinyurl.com/TheRingmastersTale

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Autistic people & empathy: what's the real story?

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By Helen Wallace-Iles So many of the general public believe that autistic people don't feel empathy towards others, so this post is designed to help set the record straight. First of all, what is empathy? Quite simply, empathy is the ability to understand what another person is thinking or feeling; but the truth is that empathy is anything but simple.

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Autistic Spectroscopy: Exploring what the “spectrum” means

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Autistic Spectroscopy: Exploring what the “spectrum” means

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Autistic Spectroscopy

When Lorna Wing started talking about autism as a ' spectrum disorder, ' it was a major step forward in understanding what autism is. Integrating Hans Asperger's important work from the 1940s, she showed that many more people than had been realised have minds that have much in common with the autistic population previously identified by Kanner.

She apparently always thought of it as multidimensional, not like a linear scale; it's been suggested that a constellation is a better way to think of this than a spectrum, which has lent itself so badly to confused ideas like "further along the spectrum." The spectrum analogy is strong if you break it down a bit though, and CL Lynch has recently made a great case that, "'It's a spectrum' doesn't mean what you think it means."

As an autistic science teacher, I endorse her explanation, but I wanted to go into a little more of the physics of spectra. If you understand what a spectroscope does, the metaphor really falls into place.

The idea of a spectrum was first introduced by Isaac Newton when he was working on optics to describe the smoothly-varying colours you get when you split white light up using a prism. More broadly, a spectrum is anything that varies smoothly so that things can be at any point along it.

Around 1800, it became clear that not all 'light' is on the visible spectrum - just past one end there's infrared radiation, and just past the other, there's ultraviolet. Every kind of electromagnetic radiation is on electromagnetic spectrum, but it turns out that only a tiny proportion of it is on the visible spectrum.

Illustration of the electromagnetic spectrum by Sonny Hallett. Only light between about 10¹⁴ and 10¹⁵ Hz is visible.

So the idea that autism is a spectrum obviously doesn't imply that everyone is 'on the autistic spectrum.' Most electromagnetic radiation is nowhere near the visible spectrum! Not only that, but most light is made up of light of various frequencies. With the exception of some laser light, every light source has its own spectrum.

That's what you see when light passes through a prism, or reflects off raindrops. It's a mistake to think of a person (or a light source) as being at a point along a spectrum; if you can, it's much more fruitful to break it down and understand various things contributing to their nature.

The solar spectrum

If you look at the spectrum from refracted sunlight, it is a pretty smooth continuum: it runs from blue through green to yellow to red, with no obvious gaps or stripes. If you look really carefully, though -  and here it helps if you use a dedicated spectroscope, rather than relying on rainstorms -  it's not as smooth as all that.

There are gaps where something has absorbed a particular frequency as the light passed through upper layers of the sun, or our own atmosphere. There are also bright stripes corresponding to superheated elements in the sun. Helium is named after the sun, Helios, because the first we knew of it was a mysterious line in the sun's spectral signature a quarter of a century before it was found on Earth.

The spectrum from an incandescent bulb is smooth, approximating black-body radiation. An 11W energy-saving LED might light look the same at first glance, but it is a different kind of light.

Other kinds of light source show spectra which are much more obviously spiky. Fireworks show the colours of the metal ions they release. Florescents and LED lights can look white, but if you break them down, they consist of a few bright peaks -  nothing like the smooth-seeming spectrum of sunlight and incandescent lights.

If you want to see this for yourself, you can use a phone screen or a DVD as a diffraction grating, and look at the reflection of a point of light in a dark room.

My phone screen is not the best spectroscope, but I think this light is incandescent.

One thing it's important to realise is that the same things that can cause a bright stripe in a spectrum can also cause a dark gap. Those dark lines in the solar spectrum are at the same frequencies as the emission lines from certain elements, but in the upper layers of the sun they're cool enough to absorb more than they emit.

There's an analogy there with the way autistic people tend towards extremes in certain traits: we might be obsessively neat or incapable of maintaining a tidy environment. We might develop precocious language abilities at an early age, or we might find language a struggle for much of our lives.

Often, these complementary differences come from the same place, and they can be found in the same person at different times, or in different ways.

Emission lines are absorption lines, only backwards.

CL suggests the following as components of the autistic spectrum; I'd be tempted to suggest each of these is best thought of as an emission line (or perhaps an absorption line) within the broader spectrum of human cognitive diversity, with the full autistic spectrum being characterised by the presence of most or all of these.

As with an actual emission spectrum, there may be an underlying cause for all of these, or perhaps more than one; we don't know if autism is really one thing that manifests differently in different people, or multiple things that manifest similarly!

Unfortunately we can't take an actual spectroscope to the human mind, so we have to study it by observing carefully, and trying to work out how people think.

CL picks out 'monotropic mindset' as one of the dimensions on which autism varies:

[ ... ] narrow but intense ability to focus, resulting in "obsessive" interests and difficulty task-switching.

This is accurate as far as it goes, but I do see monotropism as more like an ion than a single emission line in this story: it's not just one feature, but a common explanation for a whole range of things.

There's more to the orange-yellow glow of sodium ions than meets the eye.

If the Monotropism hypothesis is correct, the tendency to concentrate our processing resources explains our intense interests and resistance to task-switching; furthermore, it also provides insight into autistic social, processing, and motor differences.

It directly leads to the uneven skill sets that are such a central feature of autistic experience and helps explain why no two 'spiky profiles' quite match. It all depends where our resources ended up getting clumped. Developing skills in one area tends to leave other areas under-developed.

So autism is multidimensional: a constellation in hyperspace, not just a setting that can be dialed up and down. Understanding what it means for any individual means taking on board the many ways it varies in practice. Even so, if I'm right, a single dimension of variation - from monotropic to polytropic - indirectly explains the whole spectrum.

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Autistic Spectroscopy: Exploring what the "spectrum" means

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When Lorna Wing started talking about autism as a ' spectrum disorder, ' it was a major step forward in understanding what autism is. Integrating Hans Asperger's important work from the 1940s, she showed that many more people than had been realised have minds that have much in common with the autistic population previously identified by Kanner.

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Except for her family and closest friends, no one in Jennifer's various circles knows that she is on the spectrum. Jennifer was not diagnosed with autism until she was 45 - and then only because she wanted confirmation of what she had figured out for herself over the previous decade. Most of her life, she says, she evaded a diagnosis by forcing herself to stop doing things her parents and others found strange or unacceptable. (For privacy reasons, Jennifer asked that we not use her last name.)

Over several weeks of emailing back and forth, Jennifer confides in me some of the tricks she uses to mask her autism - for example, staring at the spot between someone's eyes instead of into their eyes, which makes her uncomfortable. But when we speak for the first time over video chat one Friday afternoon in January, I cannot pick up on any of these ploys.

She confesses to being anxious. "I didn't put on my interview face," she says. But her nervousness, too, is hidden - at least until she tells me that she is tapping her foot off camera and biting down on the chewing gum in her mouth. The only possible 'tell' I notice is that she gathers up hanks of her shoulder-length brown hair, pulls them back from her face and then lets them drop - over and over again.

In the course of more than an hour, Jennifer, a 48-year-old writer, describes the intense social and communication difficulties she experiences almost daily. She can express herself easily in writing, she says, but becomes disoriented during face-to-face communication. "The immediacy of the interaction messes with my processing," she says.

"Am I making any sense at all?" she suddenly bursts out. She is, but often fears she is not.

To compensate, Jennifer says she practices how to act. Before attending a birthday party with her son, for example, she prepares herself to be "on," correcting her posture and habitual fidgeting. She demonstrates for me how she sits up straight and becomes still. Her face takes on a pleasant and engaged expression, one she might adopt during conversation with another parent. To keep a dialogue going, she might drop in a few well-rehearsed catchphrases, such as "good grief" or "go big or go home." "I feel if I do the nods, they won't feel I'm uninterested," she says.

Over the past few years, scientists have discovered that, like Jennifer, many women on the spectrum 'camouflage' the signs of their autism. This masking may explain at least in part why three to four times as many boys as girls are diagnosed with the condition. It might also account for why girls diagnosed young tend to show severe traits, and highly intelligent girls are often diagnosed late. ( Men on the spectrum also camouflage, researchers have found, but not as commonly as women.)

Nearly everyone makes small adjustments to fit in better or conform to social norms, but camouflaging calls for constant and elaborate effort. It can help women with autism maintain their relationships and careers, but those gains often come at a heavy cost, including physical exhaustion and extreme anxiety.

"Camouflaging is often about a desperate and sometimes subconscious survival battle," says Kajsa Igelström, assistant professor of neuroscience at Linköping University in Sweden. "And this is an important point, I think - that camouflaging often develops as a natural adaptation strategy to navigate reality," she says. "For many women, it's not until they get properly diagnosed, recognized and accepted that they can fully map out who they are."

Even so, not all women who camouflage say they would have wanted to know about their autism earlier - and researchers acknowledge that the issue is fraught with complexities. Receiving a formal diagnosis often helps women understand themselves better and tap greater support, but some women say it comes with its own burdens, such as a stigmatizing label and lower expectations for achievement.

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Many girls hide their autism, sometimes evading diagnosis well into adulthood. These efforts can help women on the spectrum socially and professionally, but they can also do serious harm.

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Study Calls For End To ‘High Functioning Autism’ Label

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Study Calls For End To ‘High Functioning Autism’ Label

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A term often used in both clinical and social settings to denote the capabilities of individuals on the autism spectrum should be consigned to the history books, researchers say.

"High functioning autism" is a misnomer, according to findings published recently in the journal Autism, and creates false assumptions.

While originally used to describe people who have autism without intellectual disability, the public generally perceives those described this way as being free of significant challenges, researchers say, and that can be dangerous.

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"The term 'high functioning autism' is not a diagnostic term and is based on an IQ assessment, rather than a functional assessment," said Gail Alvares of the Telethon Kids Institute and The University of Western Australia who led the study. "It was originally used to describe people without an intellectual disability, yet somehow has crept into everyday use and has come to imply that people can manage perfectly fine, and don't experience any everyday challenges."

Alvares and her colleagues looked at data on 2,225 people ages 1 to 18 with autism, about half of whom had intellectual disability too. They looked at how the children's IQ scores compared to how they performed on a measure of functional abilities known as the Vineland Adaptive Behavior Scales.

Among those with intellectual disability, the children's functional abilities aligned with their IQ score, the study found. For the kids with average or above-average IQ scores - those who might be called "high functioning" - however, functional abilities remained well below their IQ.

"We demonstrated that those who didn't have intellectual disability - what people would have classically called 'high functioning autism' - in fact have marked challenges with their everyday skills compared to what we would typically expect from their IQ," Alvares said. "The implication of this study is that children given this 'high functioning autism' label are not just presumed to have better functioning than they really do, but they actually have far greater challenges with everyday skills than the label would suggest."

Moreover, Alvares said, the term can actually put these children at a disadvantage.

"It might be used, for example, to argue that a child should be able to go to a mainstream school without support when in fact, while they may perform well on cognitive assessments, they still struggle with skills like understanding instructions, note-taking, self-care, changes to routine or interacting with their peers.

"By continuing to use this term, we may be inadvertently perpetuating a cycle that denies people access to services and support that they need based solely on their IQ," she said.

The findings highlight the need for comprehensive evaluations of those with autism that include functional assessments to clearly identify each individual's strengths and challenges so that they can get the supports they need, researchers indicated.

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Study Calls For End To 'High Functioning Autism' Label

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A term often used in both clinical and social settings to denote the capabilities of individuals on the autism spectrum should be consigned to the history books, researchers say. "High functioning autism" is a misnomer, according to findings published recently in the journal Autism, and creates false assumptions.

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“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout

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“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout

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Exploring Autism: What is an Autistic Shutdown/Autistic Catatonia?

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Exploring Autism: What is an Autistic Shutdown/Autistic Catatonia?

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Autistic shutdowns (whether it be autistic temporary partial shutdown, autistic extended systems shutdown or autistic catatonia) are an often under-discussed aspect of autistic life in which, one minute, an autistic person might be cruising along, not a care in the world, and then the next we may...

stop.

Thankfully, in most circumstances we can be right as rain in only a few hours but, the experience without an explanation can be a terrifying prospect - especially in instances where the rate that we run out of steam becomes...

more

and more

...

frequent.

So, what actually is an autistic shutdown? What is autistic catatonia and what can be done to ease the impact of a shutdown/catatonic episode?

[to skip to the answers of any of the above questions, please click the bold red text]

What Does an Autistic Shutdown Look Like?

The winds of change can often feel like a hurricane for autistic people as our minds, which favour regularity and routine, are knocked about in an endless sea of possibilities.

In many cases, an autistic person can react to this by essentially 'rebooting' in fight or flight mode (otherwise known as a meltdown). However, in other instances, we may appear to freeze; as though the alteration has knocked us too far off course and we can't find our way back.

This, as you might have guessed from the title, is known as autistic shutdown and it's essentially when our minds have battened down the hatches during a tornado of change and, on the inside, we await for things to pass, in what autism guru: Temple Grandin describes as a 'self-imposed sensory deprivation' (but more on that later).

Due to the seemingly comatosed state that an autistic shutdown will present as, they are often perceived as autistic people being hard of hearing or flat out rude. However, a quick trip to any hearing or language specialist will right this misconception, proving that, no, autistic people in shutdowns aren't being disobedient, it's just that we can't hear you through our sensory shields.

So, what actually goes on when the blinds go down?

What Are the Different Types of Autistic Shutdown?

Autistic people may appear cool as a cucumber when in shutdown mode (as though we have entered a Zen-like state of tranquillity and powered down for the time being). However, not all is how it seems as, unlike an autistic meltdown which sees the mind reboot our bodies, a shutdown will see our minds rewire our senses, to protect us from what is causing the distress.

According to Autism: An Inside-Out Approach, this can result in one of two autism shutdown subdivides:

Temporary Partial Shutdown

Extended Systems Shutdown

Both of which may seem preferable to the destruction that is a meltdown, but don't let this deceive you into thinking that they don't have strengths and weaknesses of their own. For example:

Temporary Partial Shutdown:

Usually more common in autistic people who can be considered at the more independent part of the spectrum, a temporary partial shutdown is when an autistic person loses some or all of a basic function during moments of distress. This presents itself as involuntary modulation of the senses, which is basically a fancy way of saying that the brain reroutes power to whatever it deems necessary, to isolate an individual from a problem.

In some circumstances, temporary partial shutdown can be as simple as blocking out sound when noise is causing a sensory disturbance, but It can just as easily be taking our voice away if the brain believes we need to focus on reflecting and not projecting.

During this kind of shutdown, autistic people can become increasingly agitated, as we will still be conscious of the outside world but unable to interact with it.

Extended Systems Shutdown:

On the other hand, extended systems shutdown is where an autistic person's brain thinks it's better than its senses and, in a technique similar to how my year 8 art teacher graded my homework, it will recognize the effort we're trying to put in and couldn't care less.

This results in somewhat of a head in the sand approach, as our minds adapt the idea that what we can't process can't hurt us (something which, as a side note, ostriches don't actually do).

Under these circumstances, shutdowns may be a calmer experience for those around but, for the autistic person, we can become deaf or blind to the thing which is causing stress and therefore do not move out the danger zone. For this reason, sometimes an extended systems shutdown can feel like I am escaping to Club Tropicana, whilst other times I feel like I've been left at the Bates Motel.

What Is Autistic Catatonia?

So far we have only discussed shutdown as it has more commonly become known within the autism community. However, these kinds of shutdown are actually more of an informal term which describes an experience similar to the real deal: Autistic Catatonia - a condition which can start between the ages of 10-19 where, inexplicably, our batteries drain faster than usual and we become periodically immobile or dazed during moments of function.

Although not much has been studied regarding catatonia in autistic people, it has been theorized (here), that during these episodes in which an autistic person will slow or stop it may be that either:

Our responses hit half speed as a result of sensory function and motor ability colliding

Our rituals, obsessions and routines have garnered top billing in our mind and everything else is a slow second thought

Catatonia is not exclusive to people with autism though, as it also exists in some people with schizophrenia and Tourette's syndrome - although in non-autistic iterations a person with catatonia may become more active instead of less so.

Furthermore, despite autistic catatonia presenting itself much later than most autistic quirks, it's hereditary origin indicates that it still very much a part of the spectrum and not something we catch. While this does mean that the condition can be unavoidable, it also means that it can be prepared for.

Support and Treatment for Autistic Shutdown/Catatonia

When dealing with a distressing shutdown or a challenging bout of catatonia, there are very few steps that an autistic person can take from the inside out - except maybe ride it out and hope for the best. However, for those who are on the outside, there are one or two techniques which can (and should) be implemented to support and comfort an autist entering a shutdown.

In many cases, moving an autistic person to a place of safety or a sensory-friendly room should often be your first port of call - but do keep in mind that interrupting any flavour of an autistic shutdown could result in a switch to an autistic meltdown, which can cause involuntary violent actions.

Under these circumstances, speaking to the autistic person and trying to ease any thoughts around what may have caused the shutdown is a great way to offer reassurance, without putting yourself in harm's way. But remember that a shutdown can often be about finding 'self-imposed sensory deprivation', so don't push us further into ourselves by bombarding us with new information.

Over in academia, the overwhelming lack of research behind shutdowns and autistic catatonia does mean that psychological solutions are not exactly fool-proof. Yet, for those who are seeking to limit lengths of episodes, there's no harm in booking therapy sessions to try and locate and eliminate what an individual's triggers may be.

Furthermore, there are some who believe that the cause of catatonic states may be as a result of those pesky antipsychotics. This means that, if an autistic person is taking any regular medication and experiencing a catatonic state then, no matter how new the symptom, or how long the medication has been prescribed, it could be that your dosage needs some fine-tuning.

Carry on the Conversation:

Shutdowns are so understudied within autism that much of the information taken today comes from only 1 or 2 sources. As such, if you want to contribute to the understanding, I encourage you to share your personal or second-hand experiences of autistic shutdown, as well as any good practices for dealing with them, in the comments below.

Additionally, if you would like to read more about how autistic people regulate and process our senses, check out this article titled: Autism and Emotion Recognition: What is INTEROCEPTION?

As always, I can be found on Twitter @AutismRevised and via my email: AutisticandUnapologetic@gmail.com.

f you like what you have seen on the site today, then show your support by liking the Autistic & Unapologetic Facebook page. Also, don't forget to sign up to the Autistic & Unapologetic newsletter (found on the sidebar on laptops and underneath if you are reading this via mobile) where I share weekly updates as well as a fascinating fact I have found throughout the week.

Thank you for reading and I will see you next week for more thoughts from across the spectrum.

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Exploring Autism: What is an Autistic Shutdown/Autistic Catatonia? - Autistic & Unapologetic

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Autistic shutdowns (whether it be autistic temporary partial shutdown, autistic extended systems shutdown or autistic catatonia) are an often under-discussed aspect of autistic life in which, one minute, an autistic person might be cruising along, not a care in the world, and then the next we may... stop.

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What a Meltdown Feels Like for Someone With Autism

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What a Meltdown Feels Like for Someone With Autism

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It's never just a sandwich.

As an adult on the spectrum and a mother of children with autism, I am often asked about meltdowns and how they feel. I can tell you how it feels to have a meltdown from my perspective and how to help your child.

When you have a meltdown, it's as if the world is ending. Everything is too much and you feel like an overwhelming darkness has engulfed your very being. Irrepressible anger that may seem completely irrational to an outsider can be inwardly devastating us internally.

When your child suddenly explodes because their sandwich has been cut at the wrong angle or another child has won a game, or even because they have been jostled in line, it's the catalyst. It's the last straw on the camel's back. It's not the sandwich, necessarily; it's a build-up of things that may have happened during the day or even previous days. That sandwich was the last thing they could control and once that erred, their world crumpled. The last bit of control over their universe disappeared.

Smashing, ripping and throwing might be involved in an angry meltdown, as well as self-injurious behaviors to display outwardly the pain they're experiencing internally.

How do I know this? Because it can take me missing throwing something into the bin or my PIN failing to go into my online banking properly and I will puddle, literally explode/implode and sob like my heart will break. It will be because of a build-up of things, and frustration will be the reason.

There's also the depressive meltdown, the one that makes you feel like you're nothing, worthless, and like the world would be a better place without you.

There's no rationalizing with someone in either of these meltdowns. If you tell us it's OK, it's not. You are trivializing our distress and it will make us worse. "Stop" or "Get a grip" are also triggers, because we would if we could; no one wants to feel this way.

If your child is self-injuring, guide the hands down to a firm surface to hit.

If they are biting, grab a chewy or clean washcloth for them to fasten onto; they may need to feel the pressure of the bite to ground them, so wind a cloth around their hand so they can bite their hand without breaking the skin. If they head-butt, get crash mats and a safety helmet. A weighted blanket works well to help regulate, as does a weighted body warmer. Offer these if you see a meltdown is on its way.

Rumbling is a sure sign, or pacing up and down or verbalising aggressively , so redirect to a safe, quiet area, if possible.

If you are out and a meltdown occurs, the child may run. This is because we literally need to get away to somewhere quiet and sense of danger will fly out the window. If you need to restrain your child and get them somewhere safe ,do so. Print off a few cards detailing your relationship to your child and the fact they have autism and are having difficulties coping, as the sight of an adult carrying or holding down a screaming, struggling child can be mistaken as abduction.

If your child has violent reactions before school or after, it's more likely anxiety and frustration at not being able to communicate what's happening. Sensory overload is also a massive trigger. The school should be making accommodations for your child, like sensory breaks and allowing the use of ear defenders, tinted lenses and a chewy if needed. Check that your child is not being bullied, as they may not even realize that you don't know that they are and may feel resentful toward you for taking them.

It's never just a sandwich.

Lastly, only restrain your child if they are a danger to themselves or others, as a touch can feel like an electric shock and may cause them to strike out with a fight-or-flight mechanism.

Too often I see posts on Facebook and articles by parents moaning how terrible it is to cope with a meltdown and how hard it is for them; they have no idea how hard a meltdown is.

It's about your child and how bad they are feeling. Please don't punish or berate your child for how they have reacted, as its not willful or even conscious. Maybe they even blanked out completely, as in a full-blown meltdown. This can happen, too, leaving us bewildered at the devastation around us.

A cool drink and dark room, as well as clear, short sentences, will all help.

Remember, there's more to it then a sandwich.
The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you'd like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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What a Meltdown Feels Like for Someone With Autism

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It's never just a sandwich. As an adult on the spectrum and a mother of children with autism, I am often asked about meltdowns and how they feel. I can tell you how it feels to have a meltdown from my perspective and how to help your child.

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Mapping the Autistic Advantage from the Accounts of Adults Diagnosed with Autism: A Qualitative Study

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Mapping the Autistic Advantage from the Accounts of Adults Diagnosed with Autism: A Qualitative Study

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Autistic Skill Sets: A Spiky Profile of Peaks and Troughs

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Autistic Skill Sets: A Spiky Profile of Peaks and Troughs

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Splinter skills and spiky profiles

One of the primary things I wish people knew about autism is that autistic people tend to have 'spiky skills profiles:' we are good at some things, bad at other things, and the difference between the two tends to be much greater than it is for most other people.

Because we are bad at some things, people often expect us to be bad at other things; for example, they see someone failing to conform with social expectations, and assume that person has impaired intelligence. But because we are good at some things, people are often impatient when we're not as skilled or need support in other areas.

We are often taken to be "lazy" because we seem to master some things easily, but fail at things many find "simple." Autistic kids suffer a lot in school because when they struggle with certain tasks or subjects, teachers often assume that it's from a lack of effort.

In the workplace, we might be highly competent in certain areas- hopefully the ones central to getting the job done- but bad at networking, bad at office politics, and bad at completing tasks that nobody actually told us we should be doing.

Smooth and discontinuous spectra

If you think of skills as lying on a spectrum, some people have moderately high levels across the board. An autistic spectrum of skills is more like a series of bright peaks with dark troughs in between them. I accept that this is not quite the common description of the ' autistic spectrum,' but I stand by it.

Sometimes people talk about these islands of ability as 'splinter skills' - often autistic people are really very good at things we're good at. Mostly the skills are the result of putting a lot of work in because we're interested in it, not that we always have much control over where our interest takes us.

So-called autistic savants have caused much excitement in pop culture, but the savant narrative often talks about splinter skills in almost mystical terms- as if they were acquired effortlessly, when in many cases the opposite is true.

Having said that, I do find that I and other autistic people I know seem to pick up some skills much faster than most people. When things build on our existing interests, perhaps the deep-linking style of the monotropic mind lends itself to rapid progress within an area, often at the cost of poorer generalisation between areas of skill.

This is something like what people mean when they talk about autistic people being bad at 'big picture' thinking, but we're perfectly good at seeing the big picture if we can make logical sense of it. Most things in life obey rules of some kind, even if inconsistently.

Being determined to find overarching patterns allows us to make sense of many of the things around us, although people are frustratingly hard to predict, especially when their brains work differently from yours.

On the other hand, thinking differently often allows people to make sense of things from perspectives that other people completely miss. If you don't start with the same assumptions as other people, you are likely to miss what seems obvious to most; however, you are also more likely to find your way to answers that pass the majority by.

We all benefit from being around people who are not like us, as well as from people who are. The diversity of human thinking is one of our species' great assets, and communities do best when they make the most of everybody's strengths and support them with their difficulties. The first step in doing that is to recognise what those strengths and support-needs are.

People can change and learn, but sometimes it takes a lot of time and effort, and sometimes that effort has the opposite effect. Shutdowns and burnout can lead to massive losses of ability and motivation, often across multiple areas and sometimes lasting for months (or longer).

Never assume that because something is easy for you, it must be easy for everybody else - but don't be too quick to decide anything is impossible, either.

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Autistic Skill Sets: A Spiky Profile of Peaks and Troughs

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One of the primary things I wish people knew about autism is that autistic people tend to have 'spiky skills profiles:' we are good at some things, bad at other things, and the difference between the two tends to be much greater than it is for most other people.

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Me and Monotropism: A unified theory of autism

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Me and Monotropism: A unified theory of autism

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Autism is still widely seen as mysterious  -  so much so that the most widely recognised symbol of it (unpopular in the autistic community) is a puzzle piece. Various psychological theories of autism haven't helped all that much, largely because all of the most established ones leave vast swathes of autistic experience completely untouched, and tend to leave people with harmful misconceptions. The one theory I think comes anywhere close to explaining the whole shebang  -  monotropism  -  has been largely overlooked by psychologists.

This rankles with me as an autistic adult, as a science teacher and (full disclosure) as the offspring of the theory's originator, Dinah Murray. As someone on the spectrum myself, I dislike the pathologising, deficit-based framing of the best-known theories of autism, and I hate the mistakes they lead to in practice: assuming we lack empathy and have no idea what's going on in anyone else's head; painting autistic cognition as inherently more 'male'; expecting skills we're slow to pick up as kids to be lacking throughout our lives.

It bothers me as a science teacher, almost as much as it troubles me as an autist, that psychologists settled for theories of autism which simply fail to provide any explanation for so much of autistic thinking. Granted, my background is in physics and philosophy rather than psychology, but I've always understood that when your theory only partially explains the phenomena being examined, you should keep looking for a better theory. When there are persistent threads left unexplained  - such as the sensory differences so common among autistic people  -  you really need a more complete framework. Partial theories can be useful, but it's all too easy to stretch them beyond their domain of applicability, and it can cause real problems, like assuming autistic adults have no theory of mind. Maybe it's my autistic perfectionism, but I don't like theories to leave too many loose ends.

Monotropism provides a far more comprehensive explanation for autistic cognition than any of its competitors, so it has been good to see it finally starting to get more recognition among psychologists (as in Sue Fletcher-Watson's keynote talk at the 2018 Autistica conference). In a nutshell, monotropism is the tendency for our interests to pull us in more strongly than most people. It rests on a model of the mind as an 'interest system': we are all interested in many things, and our interests help direct our attention. Different interests are salient at different times. In a monotropic mind, fewer interests tend to be aroused at any time, and they attract more of our processing resources, making it harder to deal with things outside of our current attention tunnel.

The classic paper on this, ' Attention, Monotropism and the Diagnostic Criteria for Autism ' largely focuses on how the theory provides convincing accounts of all the features of autism listed in diagnostic manuals, and ties them together in a way other theories fail to. The authors do a persuasive job of this, but I find the diagnostic criteria so lacking when it comes to accounting for the experience of autism that I'm not going to use that framing. Instead I will focus on some key features of autism as seen from the inside: autistic inertia; sensory differences; social differences; and focused interests. I close with some thoughts on implications for practice, the role of developmental perspectives, and potential research directions.
Autistic inertia
The bulk of what's usually referred to as 'executive dysfunction' in autism  -  difficulties getting going with things, executing plans, and tearing ourselves away from things once we've started  - are more informatively talked about as 'autistic inertia'. That is, resistance to a change in state: difficulty starting, stopping or changing direction. This is central to many of the difficulties autistic people face in life, but it is also part of what makes autistic thinking distinctive and valuable.

I'm a little uncomfortable with 'executive dysfunction' as a label for this, because it makes it seem like it's a problem with steering; it's more helpful to think about momentum of thought carrying us forward, often to conclusions that others might have missed. Thinking in terms of inertia also gives some insight into the discomfort of being interrupted, or plans changing. It's as if we've loaded a cart to the brim with thoughts and feelings, and then we suddenly have to steer it round a sharp corner.

This tendency follows naturally from monotropism. Whatever interest is most aroused in a monotropic mind tends to pull in a whole load of processing resources. That naturally makes it harder to change track, especially when you understand that the paths of our thoughts always leave an imprint in our minds, and autistic ones leave deeper grooves than they might in the average mind.
Sensory differences
It is easier for autistic people to process one channel at a time. Distributing our attention between multiple streams takes effort, and sometimes just doesn't work at all. Again, monotropism is characterised by intensity wherever our focus is, at the cost of processing resources that might otherwise be used to deal with other input or interests. This is often a problem in social situations. Autism is occasionally mistaken for deafness, especially in small children: if our attention is elsewhere, auditory input might register as an unwelcome interruption we would much rather ignore, or it might not register at all.

Conversely, if we can't tune an input out, it is often experienced as horribly intrusive. I think this is from a combination of discomfort at our attention being constantly pulled away from where we want it to be, with the tendency to feel something strongly if it's present in our awareness at all. Our brains throw a lot of resources at whatever our focus is on, which accounts for both the intensity of conscious awareness and the pain of distracting stimuli we can't filter out. There is likely a developmental aspect to this: neural pathways that receive a lot of stimulation grow stronger, so perhaps autistic people are prone to long-term hyper-sensitivity in senses receiving intense attention, and under-sensitivity in channels we regularly tune out.

Often, if we get overloaded, it helps to have controlled or predictable input. Stimming, flapping, rocking and humming provide something we can do and feel without having to think about it, and can make it much easier to filter, to focus on something else, or to deal with feelings of overwhelm.
Social differences
Many social differences are sensory differences at root. Being unable to process multiple channels of input most of the time makes the combination of spoken words, body language and eye contact tremendously challenging. Add autistic inertia to the mix, and we can also see why autistic people often need more processing time and can find the back-and-forth of neurotypical conversation difficult to keep up with.

Monotropic processing also explains the literal-mindedness that autistic people are notorious for. Polytropic minds have multiple interests aroused at any time, pulling in multiple strands of information, both external and internal. They are primed to be on the look-out for things like social implications, and effortlessly decode metaphors and indirect language. The monotropic mind tends to expect one thing to follow from another more directly than that. Most autistic people get the hang of metaphors eventually, but many still report the literal meaning of a saying tends to come to mind first, and it takes a moment's processing to substitute the metaphorical intent.

Autistic focus tends to mean we miss a lot of things that other people register, but other people probably miss just as many things  - just different things. Psychologists like Peter Vermeulen talk about 'context-blindness': a useful concept, but we all construct our own contexts all the time, and a better way of thinking about this is probably as 'a mismatch of salience', to borrow the title of Damian Milton's essay collection. I might miss your context, but don't assume you understand mine without checking.

A lot of processing power goes into modelling other minds, something that can seem effortless but is never trivial. It becomes much harder when the minds in question are very different from your own. When autistic people fail to do this, it's not so much that we're unable  - the idea of 'mind-blindness' is deeply misleading  -  but that we don't always have the processing power left over to do it effectively, when our attention is being pulled strongly in another direction.
Focused interests
Interests are at the heart of the monotropism account, and have been present in characterisations of autism right from the start. Their near-absence from the more established theories of autism, and indeed the entire psychological literature on autism, is glaring. The diagnostic criteria talk about 'restricted' and 'repetitive' interests, but the main characteristic feature of autistic 'special interests' is really how much we focus on them (or they focus us), not how restricted or repetitive they are.

Everyone's passions are repetitive; that's just in the nature of strong interests. When people talk about 'restricted interests' what they mostly seem to mean is that they can't fathom our failure to be interested in things that seem important to them. It is true that we're often powerfully interested in a few things for a relatively long time, but they do change over the years, and sometimes over much shorter time periods. For my part, I have many interests, some of them fascinations since childhood, most of them all-consuming when I get into them. Chatting with autistic adults about the things that interest them often makes the idea that their interests are 'restricted' seem preposterous.

What is true is that our interests pull us in very strongly and persistently, compared with most people. It can be hard to think about anything else when we're particularly invested in a topic, and hard to imagine how little other people might care about it. That can be a huge asset in many fields  -  intense focus is indispensible in science, maths, technology, music, art and philosophy, among others. Obviously autistic people are not the only ones capable of hyperfocus and persistent interests, but it is a common feature of the autistic psyche, and one that is too often squandered when workplaces and schools are not set up to allow it.
Implications for practice
The biggest practical thing to take away from this is the importance of meeting the child, or adult, where they are. This is not an insight unique to the monotropism perspective, but nothing else I've seen demonstrates with such clarity why it's so crucial. Treat interests as something to work with. Recognise what someone's passionate about and learn how to become part of the attention tunnels which come with monotropic focus, rather than trying to just reach in and pull the person out of the flow states that are so important to us. Never pathologise 'special interests', and don't assume that autistic interests are 'restricted'  - there are plenty of ways to get us interested in new things, it's just that they mostly involve taking existing interests and building on them.

Stability is a basic human need, and life as a monotropic person in a polytropic world is often unstable. It is deeply destabilising to be pulled out of an attention tunnel, to be regularly surprised by people's actions, or to feel you are not being understood. Much of autistic behaviour can be seen as attempts to restore some kind of equilibrium.

'Restricted, repetitive behaviours' are a natural response to feelings of instability. They allow you to assert control over what is happening, and feel safer. This is probably a useful general rule, not something that's only true in autism  -  we see restricted, repetitive behaviours in all sorts of contexts, it's mostly just that autistic people's ones stand out as particularly odd, to most people.

Helping autistic people to maintain a sense of stability should be a priority for those around them. It's widely understood that routines can often help autistic people, but I'm not sure it's widely understood why. A lot of it is about minimising mental load: taking out things that we have to think about, so that we can maintain focus. Another big part of it is that changing plans involves such a mental shift that it's exhausting. The ability to feel in control is central to all of this, and externally imposed routines sometimes backfire for that reason. Frustrations and anxiety about control can manifest in demand avoidance, meltdowns and shutdowns at times.
The dynamically developing mind
No theory about minds is complete unless it's dynamic and developmental: we are all changing all the time, and big parts of what make autistic people different have to do with heading down different development paths. Whatever the cause, a failure to connect with the people around you, especially parents, is going to have long-term implications for a person and how they relate to those around them. Perhaps even bigger than that is the disorientation faced regularly by so many autistic children, coupled with wrenching dislocations as they are forced to change tracks again and again to suit other people's schedules. High levels of stress and anxiety have far-reaching effects on a person's long term mental and physical health, and it can be difficult to disentangle some of these from the traits that follow directly from autistic ways of thinking.

The developmental perspective is particularly crucial because we go on learning throughout our lives, and some of the things that are impossibly difficult when we are young get much easier over time once we start focusing on them and practising. This does not mean we stop being autistic  -  all signs are that a monotropic brain is for life  -  but it does mean that many of the traits which are considered telltale signs of autism in children are only sometimes seen in autistic adults.

Different experiences in youth and throughout life, and particularly the different choices we make about where to focus our attention, are likely to account for a good chunk of the diversity of ways that autism can present. Growing up in a household where eccentricity was embraced and hyperfocus understood probably helped me to grow into a relatively confident adult, and not an especially anxious one. Neither myself nor my mother grew up thinking of ourselves as autistic, but we were allowed to be weird, and that makes a big difference.

Part of the variation in autism is also likely to be due to different degrees of monotropism: it has been suggested that the trait might follow a normal distribution, with some people being very monotropic, while others (perhaps the world's natural multitaskers and people-wranglers) are unusually polytropic. However the trait is distributed, the implication is that some people are closer to having autistic minds than others without qualifying as autistic themselves, and some autistic people have more atypical minds than others in terms of monotropism. This doesn't make the spectrum linear: there are so many different ways for autism to manifest, and so many co-occurring conditions, that no one variable can come close to capturing them all.
Implications for research
If, as I've argued, monotropism provides a common underlying explanation for all the main features of autistic psychology, then autism is not nearly as mysterious as people tend to think. We do not need to rely on theories which explain only a few aspects of autistic cognition, with no convincing explanation for sensory hyper- and hypo-sensitivity, or the intensity of autistic interests.

Why then is monotropism not already better known, despite a flourishing of attention in recent years? I believe the reasons are more sociological than psychological. When 'Attention, Monotropism...' was published in 2005, none of the three authors were professional psychologists, although one has a PhD in psycholinguistics, and had worked extensively with people on the autistic spectrum; another, Wenn Lawson, received a PhD later for further work on this theory, with their thesis on 'Single Attention and Cognition in Autism' since turned into the book A Passionate Mind. Lawson had an official diagnosis of autism, which should be an asset for anyone working in autism, but is still seen by some to undermine credibility instead. The other two were undiagnosed.

None were enmeshed in the world of professional psychology, and despite Lawson's book pointing to several possible tests, they do not seem to have known which strings to pull to make sure psychologists conducted the empirical work needed to rigorously test monotropism. Autism deserves good, well-evidenced theories, and while it is easy to point out major flaws in autism theories that psychologists have largely accepted, it makes sense that they would be reluctant to accept a newer theory from relative outsiders, however much it explains. Sue Fletcher-Watson, a psychologist in the field, points out that 'often in psychology a new theory is built on top of an empirical finding - this is what happened certainly with Theory of Mind which was rooted in a 1985 experimental study by Simon Baron-Cohen, Alan Leslie and Uta Frith. For non-autistic psychologists, there is no lived experience of autism out of which to build a theoretical model and so experimental data have to come first. This could be another reason why autistic-led theories, drawn at least in part from internal observations, struggle to make a big impact in mainstream research.'

This could be about to change. More researchers in recent years have started listening seriously to autistic perspectives on our own experiences and the theories used to describe us, and this is undoubtedly part of the reason monotropism has been gaining more attention. As psychologists dig deeper into aspects of autistic experience they have tended to overlook, including perceptual processing and the nature of autistic interests, there is great appeal in a framework that ties together these seemingly disparate strands (while deepening explanations of things like executive function and social problems). Perhaps it can also provide some helpful hints for neuroscientists. Meanwhile, insight into the monotropic mind is already helpful for anyone living and working with autistic people; I would love to see more practice-based research, looking at the impact of being able to make better sense of autistic behaviour and perspectives.

My hope is that in a few years psychologists will look back at the fragmentary accounts they have been working with, and wonder why it all seemed such a puzzle for so long. But I'm not a psychologist, I'm just an autistic schoolteacher; perhaps you should take what I say with a grain of salt.
- Fergus Murray (aka Oolong) is a science teacher and writer based in Edinburgh; formally assessed as autistic in 2010, at the age of 32.
"My mum Dinah started thinking about the mind as an interest system when I was a kid, with her PhD on Language and Interests submitted when I was eight. A few years later she read about autism in Uta Frith's book Explaining the Enigma, and I remember her excitement as she started to realise her model could easily be modified to explain rather more of this enigma than Frith or anybody seemed to have managed up to then.

So I grew up knowing about monotropism, and we have discussed it extensively since. I always knew that my way of thinking tended that way, but it took years for either of us to fully identify with it. In many ways, our autism is atypical - we are not introverted, nor socially unskilled, and our interests are wide-ranging (if sometimes all-consuming). We fit the profile sometimes misleadingly labelled 'female autism' rather well, but this was even less understood then that it is now. It took spending a lot of time around autistic people to recognise that our easy understanding of their way of thinking came not just thanks to the valuable lens of monotropism, but also because it often resembled our own."
"The photos at the top are my own; I thought it could be good to have something that illustrates the idea of degrees of branching, and after spending a while looking at satellite images of gorges and deltas this is what I came up with."
This article was originally published online in November 2018
References
Beardon, L. (2017). Autism and Asperger Syndrome in Adults.

Chown, N. (2016). Understanding and evaluating autism theory. Jessica Kingsley Publishers.

Chown N., Beardon L. (2017) Autism Theory. In: Volkmar F. (eds) Encyclopedia of Autism Spectrum Disorders. Springer, New York, NY

Fletcher-Watson, S., Adams, J., Brook, K., Charman, T., Crane, L., Cusack, J., ... & Pellicano, E. (2018). Making the future together: Shaping autism research through meaningful participation. Autism, 1362361318786721.

Lawson, W. (2011). The passionate mind: How individuals with autism learn. Jessica Kingsley Publishers.

McDonnell, A., & Milton, D. (2014). Going with the flow: reconsidering 'repetitive behaviour' through the concept of 'flow states'.

Milton, D. E. (2012). On the ontological status of autism: the 'double empathy problem'. Disability & Society, 27(6), 883-887.

Murray, D., Lesser, M., & Lawson, W. (2005). Attention, monotropism and the diagnostic criteria for autism. Autism, 9(2), 139-156.

Murray D. (2018) Monotropism - An Interest Based Account of Autism. In: Volkmar F. (eds) Encyclopedia of Autism Spectrum Disorders. Springer, New York, NY
With thanks to Dinah Murray, Sonny Hallett, Richard Woods, Nick Chown, Niall Leighton, Damian Milton and Sue Fletcher-Watson for their help refining my thoughts.

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Me and Monotropism: A unified theory of autism

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Autism is still widely seen as mysterious  -  so much so that the most widely recognised symbol of it (unpopular in the autistic community) is a puzzle piece. Various psychological theories of autism haven't helped all that much, largely because all of the most established ones leave vast swathes of autistic experience completely untouched, and tend to leave people with harmful misconceptions.

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Toward a Neuroqueer Future: An Interview with Nick Walker

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Toward a Neuroqueer Future: An Interview with Nick Walker

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Neurodiversity in Higher Education: Positive Responses to Specific Learning Differences

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Neurodiversity in Higher Education: Positive Responses to Specific Learning Differences

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List of Illustrations.

Notes on contributors.

Foreword (Sally Brown).

1. Introduction (David Pollak).

2. Neurodiversity, disability, legislation and policy development (Alan Hurst).

3. The psychological assessment of neurodiversity (David Grant).

4. Dyslexia (Ross Cooper).

5. Dyspraxia (Sharon Drew).

6. Dyscalculia (Clare Trott).

7. Asperger Syndrome: empathy is a two-way street (Nicola Martin).

8. Attention Deficit (Hyperactivity) Disorder - AD(H)D (Mary Colley).

9. Mental well-being (Kitty McCrea).

10. Assistive technology (E. A. Draffan).

11. Teaching, learning and assessment: "It's not like you think" (Heather Symonds).

12. Conclusion: linking the strands together (David Pollak).

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Neurodiversity in Higher Education: Positive Responses to Specific Learning Differences

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This edited collection offers screening, teaching and practical support for specific learning differences in Higher Education UsesÂ international case studies to explain how psychologists identify, assess and support a range of specific learning differences in students The higher education sector has come to terms with dyslexia, but todayâ??s students are

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Neurodiversity in higher education: a narrative synthesis

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Neurodiversity in higher education: a narrative synthesis

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Abstract

Neurodiversity is an umbrella term, including dyspraxia, dyslexia, attention deficit hyperactivity disorder, dyscalculia, autistic spectrum and Tourette syndrome. The increasing number of students with learning difficulties associated with neurodiversity entering higher education (HE) poses a shared and growing challenge internationally for teachers and institutional leaders. This narrative synthesis draws together a corpus of international literature on how neurodiverse students experience higher education and the ways in which higher education institutions respond to the cluster of neurodiverse conditions. A systematic review was carried out to search, retrieve, appraise and synthesize the available evidence to provide an original contribution to the literature and significant insights of worth to higher education internationally. An inclusive approach to data extraction was used to ensure that all the relevant studies were included. All stages of the review process, including the initial search, screening, sample selection and analysis, are described. Three main themes and 11 subthemes were identified. Although the majority of publications focus on either dyslexia, autistic spectrum disorder, or ADHD, some common themes are evident in student experience across learning difficulties associated with neurodiversity. Although support services and technologies are available to meet students' specific needs, there is an apparent dislocation between the two. Fear of stigmatization and labelling worsens the divide between what is needed and what is available to ensure neurodiverse students' success in higher education, where good intentions are evidently not enough.

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Notes

Common acronyms:

DCDDevelopmental coordination disorder

AD(H)DAttention deficit (hyperactivity) disorder

ASDAutism spectrum disorder

ASAsperger's syndrome

SpLDsSpecific learning difficulties

LDLearning disabilities

References

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Konza, D. (2008). Inclusion of students with disabilities in new times: responding to the challenge. In, P. Kell, W. Vialle, D. Konza, G. Vogl (Eds.), Learning and the learner: exploring learning for new times (pp. 39-63). University of Wollongong.

Lewandowski, L., Gathje, R. A., Lovett, B. J., & Gordon, M. (2013). Test-taking skills in college students with and without ADHD. Journal of Psychoeducational Assessment, 31(1), 41-52.

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Acknowledgements

No funding was received for this project.

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Authors and Affiliations

Coventry University, Priory Street, Coventry, UK

Lynn Clouder

University of Milan-Bicocca, Milan, Italy

Alessia Cinotti

Universidad Nacional de Rosario, Rosario, Argentina

María Virginia Ferreyra & Patricia Rojo

University of Colima, Colima, Mexico

Genoveva Amador Fierros

Nazarbayev University, Nur-Sultan City, Kazakhstan

Mehmet Karakus

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Correspondence to Lynn Clouder.

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Clouder, L., Karakus, M., Cinotti, A. et al. Neurodiversity in higher education: a narrative synthesis. High Educ 80, 757-778 (2020). https://doi.org/10.1007/s10734-020-00513-6
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Neurodiversity in higher education: a narrative synthesis - Higher Education

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Neurodiversity is an umbrella term, including dyspraxia, dyslexia, attention deficit hyperactivity disorder, dyscalculia, autistic spectrum and Tourette syndrome. The increasing number of students with learning difficulties associated with neurodiversity entering higher education (HE) poses a shared and growing challenge internationally for teachers and institutional leaders.

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Creating a Culture of Accessibility in the Sciences

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Creating a Culture of Accessibility in the Sciences

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Book * 2017

Authors:

Mahadeo A. Sukhai and Chelsea E. Mohler

Book * 2017

Authors:

Mahadeo A. Sukhai and Chelsea E. Mohler

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Creating a Culture of Accessibility in the Sciences provides insights and advice on integrating students with disabilities into the STEM fields. Each chapter features research and ... read full description

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Creating a Culture of Accessibility in the Sciences provides insights and advice on integrating students with disabilities into the STEM fields. Each chapter features research and best practices that are interwoven with experiential narratives.

The book is reflective of the diversity of STEM disciplines (life and physical sciences, engineering, and mathematics), and is also reflective of cross-disability perspectives (physical, sensory, learning, mental health, chronic medical and developmental disabilities).

It is a useful resource for STEM faculty and university administrators working with students with disabilities, as well as STEM industry professionals interested in accommodating employees with disabilities.

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Creating a Culture of Accessibility in the Sciences provides insights and advice on integrating students with disabilities into the STEM fields. Each chapter features research and best practices that are interwoven with experiential narratives.

The book is reflective of the diversity of STEM disciplines (life and physical sciences, engineering, and mathematics), and is also reflective of cross-disability perspectives (physical, sensory, learning, mental health, chronic medical and developmental disabilities).

It is a useful resource for STEM faculty and university administrators working with students with disabilities, as well as STEM industry professionals interested in accommodating employees with disabilities.

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Offers a global perspective on making research or work spaces accessible for students with disabilities in the STEM fields

Discusses best practices on accommodating and supporting students and demonstrates how these practices can be translated across disciplines

Enhances faculty knowledge of inclusive teaching practices, adaptive equipment, accessibility features, and accommodations in science laboratories, which would enable the safe participation of students with disabilities

Provides advice for students with disabilities on disclosure and mentoring

Show more

Offers a global perspective on making research or work spaces accessible for students with disabilities in the STEM fields

Discusses best practices on accommodating and supporting students and demonstrates how these practices can be translated across disciplines

Enhances faculty knowledge of inclusive teaching practices, adaptive equipment, accessibility features, and accommodations in science laboratories, which would enable the safe participation of students with disabilities

Provides advice for students with disabilities on disclosure and mentoring

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Mahadeo A. Sukhai

University of Toronto and Ontario Cancer Institute, Toronto, ON, Canada

Chelsea E. Mohler

National Educational Association of Disabled Students (NEADS), Ottawa

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Creating a Culture of Accessibility in the Sciences

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Book * 2017 Authors: Mahadeo A. Sukhai and Chelsea E. Mohler Book * 2017 Authors: Mahadeo A. Sukhai and Chelsea E. Mohler Creating a Culture of Accessibility in the Sciences provides insights and advice on integrating students with disabilities into the STEM fields. Each chapter features research and ...

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Decision-making on autism: Nothing About Us Without Us in practice

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Decision-making on autism: Nothing About Us Without Us in practice

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Decision-making on autism: Nothing About Us Without Us in practice

This is a guide for people and organisations who find themselves in the position of making decisions affecting autistic people - for example, when planning services and events or formulating policies, research projects or resources about autism. Much of this will apply to other groups of disabled, marginalised or disadvantaged people, but naturally we don't wish to speak for any other groups.

We want you to think about why autistic people need to be included in these decisions, and what that might mean for the distribution of power in making them. Above all, we want to give you tools to help you do this, so that if you are doing something about us, you do it with us.

Why involve autistic people in decisions about autism?

If you are not listening to autistic people, and taking what we say about our own experiences seriously, you will make worse decisions about autism. You will leave yourself open to misunderstandings and mistakes that most autistic people would spot at the outset, and you will shut yourself off from good ideas that non-autistic people would never have thought of.

There may be people who are not autistic, but have deep and genuine insight into autistic experience. Even so, if you want to know who they are, you should be asking autistic people. Too many self-professed autism experts misunderstand autistic experience at a basic level, and the same goes for family members who are not on the autistic spectrum themselves. To be clear, this is not really their fault; it is perfectly normal to have difficulty understanding the experiences of people who are very different from yourself.

Even within the autistic population, the diversity of experiences and support needs means that none of us automatically have insight into all autistic experiences. Many of us have co-occurring conditions which can change what autism means for each of us. However, autistic people do have a major head start in understanding what other autistic people go through, especially if they have spent much time with the wider autistic community. The diversity of the spectrum is a reason to talk to more autistic people and representative organisations, never an excuse to talk to us less.

Family members and professionals bring their own insights: they may have been exposed to autistic experiences, and helped autistic people, in ways that some autistic advocates haven't. They also know all about the challenges that come with their own roles, and it is absolutely right that these groups should be included in conversations about autism. What should not happen is for them to dominate those conversation, as they historically have done. Most of the big autism organisations were started by parents, and very few of them have meaningful autistic input at the highest levels. Autistic people have been talked over too often, sometimes with disastrous consequences.

Non-autistic voices should not be prioritised over those who are autistic themselves, and must never be treated as interchangeable with our own. What parents and professionals want and need is not always the same as what autistic people want and need. It is only natural that their perspectives are different from ours, which needs to be respected and acknowledged. Where relevant, autistic parents and autistic professionals should usually be sought out, alongside others, for their ability to see things from multiple angles. Many autistic people work with or have autistic children, including some with very high support needs. Please listen to them.

How much should autistic people be involved?

The short answer is surely as much as possible.

It obviously depends on the nature and scale of what you're working on, though, and also the experience and expertise of the non-autistic participants. It is possible for non-autistic people to form a good enough understanding of autistic experiences to do very useful work. Some even have some understanding of autistic culture and community. It's okay that not everyone doing things about autism is autistic. However, everyone working on anything to do with autism ought to be prepared to listen to and learn from autistic people at any time. Accept that you might get things wrong; keep an open mind and be ready to learn.

It is good to be aware of tools like Arnstein's Ladder of Participation, and consider what level of participation is appropriate and feasible for your project. For some things, mere consultation might be good enough, but it is not the same thing as active participation. For that, autistic people need to be given some actual power over the decisions being made. Otherwise, it is much too easy to 'consult' once you have already decided what you are doing, or to convince yourself you know better than the people you've consulted with.

How to include autistic people in decisions about autism

Let us look now at some of the ways that organisations often fail to 'closely consult with and actively involve' autistic people in decision-making processes about us, as required by Article 4.3 of the UN Convention on the Rights of Persons with Disabilities (CRPD), and how they can do better.

The first failure often comes right at the start, when ideas are being formulated about how to help autistic people. Too often, a project or approach has already been committed to, by the time a single autistic person is consulted about whether it's a good idea. Not that you should stop at asking a single autistic person, if you think you're onto something. The CRPD is very clear that representative Disabled People's Organisations should be closely consulted by state parties to the convention. In this case, that would be representative Autistic People's Organisations (APOs), with all-autistic or at least majority-autistic boards, and a membership that they are accountable to.

Sometimes a single autistic person is all it would take to flag up what a horrible idea something is, though, so that might be a good place to start.

Action points:

Have informal conversations with autistic people, especially ones with relevant expertise. You might find the hashtags #AskingAutistics and #DisabilityTwitter useful here, or groups like Ask An Autistic and Autistic Allies on Facebook. Perhaps you also know some autistic people who would be happy to be asked directly, although please be cautious of demanding work from people, or only talking to people who won't want to hurt your feelings. Nobody owes you free labour or validation, but not everyone will have the confidence to refuse them.

Look for local APOs to get more formal feedback. If you can't find any, look for more general Disabled People's Organisations and see if they can recommend anyone. We have some pointers in the Resources section below.

Be wary when seeking advice from autism organisations that are not run by autistic people; many of the big autism charities do good work, and may give good advice. However, it is completely natural that they would favour autistic people who fit with the charity's priorities, which may not always match those of the wider autistic community.

The next point of failure comes almost immediately after the first. Having initiated a project, hopefully with some kind of encouragement from someone in the population it's aimed at, too many organisations then carry on for months at a time without consulting any more autistic people, or even running things by the same people who initially approved of the idea. Rather than seeking ongoing input, they go off and invest a load of time and energy into their chosen course. If and when they finally do go back to autistic people, it's already too late to make really substantial changes.

Another sadly common error is to only make space for one autistic person. This leaves you vulnerable to mistaking one person's ideas for general truths, and it leaves the autistic person vulnerable to being disbelieved about things things that another autistic person could have easily confirmed. It also puts a lot of pressure on that person; we should never have to think that if we can't make it for any reason, there won't be any autistic people in the room. Since there are all sorts of reasons why a disabled person might have to miss meetings or leave a project entirely, it is unfair not to build in some redundancy.

Note that not all autistic people are willing to be publicly open about it. This should absolutely be respected, and in many cases it should be possible for their contributions to be made without publicly identifying them. Even so, from the outside, including no openly autistic people looks very much like including no autistic people at all. If none of the autistic people involved are willing to be open about it, you probably weren't involving enough autistic people in the first place.

Action points:

Most autism-related projects should have a budget for hiring autistic consultants; this is always a good investment. If for some reason it is impossible, you should still look for ways to involve them in generating and refining ideas, and make it worth their while. It is unfair to expect anyone to put in much work for free.

Hire autistic people with relevant expertise, not only as consultants but also as fellow professionals. Hiring designers or copy-writers for a project about autism? Look for autistic ones.

Never wait so long between conversations with autistic people that it's too late to backtrack if they let you know you're on completely the wrong path.

Finally, you should plan for autistic involvement at the termination phase of a project, and especially in evaluating how it went. Ask autistic people what they thought of it, whether it helped them, whether it harmed them. This might seem obvious, but we have seen studies where the only outcomes reported were based on the view of parents. Some autism-related projects are not primarily aimed at benefiting autistic people. Ask them anyway. Many things that benefit autistic people will make lives easier for others, but some things that make life easier for others will actually harm autistic people.

If a project goes well, the autistic community will want to hear about it. If it was well designed to help us, we will be very happy to help spread the word about it, and a thriving online autistic community means that good news can spread far and fast.

How not to exclude autistic people from decisions about autism

So far, we have focused on positive ways of including autistic people. We also need to acknowledge some of the difficulties involved, to help you navigate around them. These are all relevant to the inclusion of autistic people more generally.

Autistic people are often blunt. As a social difference or disability, autism is largely characterised by mismatched expectations among autistic and non-autistic people. Autistic people often struggle with social niceties, especially in face-to-face meetings, and more especially in stressful ones. Many have low tolerance for untruths and evasion, and are likely to tell you straight that you're doing something wrong. We are liable to disregard conventional notions of authority and social hierarchies, sometimes offending people by not showing the deference they expect. If we perceive injustice, it can be very difficult to let it lie.

Autistic people are often anxious. We may be afraid to speak out because we've been yelled at too often in the past, or ignored. Unclear expectations can be paralysing. We may also need time to gather our thoughts and get up courage to speak. Clear communication and patient facilitation are invaluable. Make sure that facilitators are aware of how difficult autistic people can find it to get a word in, and encourage the use of non-verbal signals, such as raising a hand, for participants to show that they would like to speak. Make sure that people can contribute in writing or by other means.

Autistic people are often prone to overload. This includes sensory overload: bright lights, especially fluorescents, can be painful and make it hard to focus, as can scents. Noisy environments can make it impossible to hear. Over-complicated food might be inedible for some of us. We can also suffer from information overload - being expected to take in too much at a time, especially if it is from multiple channels. Even with something like emails, where we can deal with them at our leisure, we might hit a point where it's just too much and we can't think about it any more. Information should be clear and concise, but comprehensive. Follow principles of good information design: lead with the most salient points, highlight key information and use structure to ensure that people can see how to find out more. Avoid ambiguity, and take special care to make any expectations explicit.

Autistic people often appreciate details in advance. We may need to mentally prepare for new situations: who will be there, what will happen and when, what the space will look like, what is expected from us. Having this available can help with all of the above, even though some autistic people will never look at it. The ideal is probably to have a wealth of information available, but ensure that anything that absolutely must not be missed is brought out very clearly, as in a few bullet points. It is useful to provide things in easy read format. Check with autistic people about what they think would be helpful.

Autistic people get tired. All those misunderstandings, uncertainties and sensory stressors can get exhausting. We might be bursting with energy when we are on a roll, but we often have to conserve our energy carefully at other times. We also tend to experience a lot of inertia, especially when tired, meaning we may have difficulty getting started, changing tracks, or stopping. Executive functions suffer when our resources run low. That can sometimes lead to us putting things off, or forgetting about them. Learn what it takes to work with the relevant autistic people: You might need to send reminders, give some space, or power on in the face of stuckness. Remember that they are probably not doing any of this to spite you.

Autistic people need processing time. Sometimes we need a while to digest information and follow up later. Please make this as easy as possible.

Autistic people are not daft. Presume competence. If you ask for our views on a project then disregard what we say, we will eventually find out. As many autistic people place a high value on truth, if you say one thing and do another then this will cause significant offence.

Online participation. Some autistic people find it difficult to attend meetings, either because the setting is too overwhelming and stressful, or because they have other demands on their time and energy (e.g. caring responsibilities, employment). Provide opportunities for autistic people to contribute their ideas in their own time, from a place where they feel comfortable. This can also help you to reach a greater number of people, including those who struggle to attend meetings in town because they live in remote or rural locations.

Resources

Autistic People's Organisations

Disabled People's Organisations

Laws and Policies

Guides and Articles

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Decision-making on autism: Nothing About Us Without Us in practice This is a guide for people and organisations who find themselves in the position of making decisions affecting autistic people - for example, when planning services and events or formulating policies, research projects or resources about autism.

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In The AMASE Research Podcast, AMASE members talk with autism researchers, and autistic people connected with research, about their work. We are interested in what autism research means for autistic people, and how autistic people are involved in directing and prioritising research. Subscribe to the RSS feed, listen on SoundCloud, or read transcripts.

In the first episode of The AMASE Research Podcast, Sonny and Fergus talk with Dr Sue Fletcher-Watson (@SueReviews), Senior Research Fellow at The University of Edinburgh's Patrick Wild Centre, mostly about the Diversity in Social Intelligence project. This is an experiment looking at whether autistic people communicate better with each other than people do between different neurotypes.
Transcript here
In the second episode of The AMASE Research Podcast, Sonny and Fergus talk to Bérengère Digard (@BerengereDigard), a PhD student at Edinburgh University, about language and thinking. Bérengère is researching the cognitive effects of bilingualism in autistic and non-autistic adults. Many autistic kids have been excluded from language learning on questionable expert advice, and she's investigating whether the opportunity to develop cognitive skills like perspective-taking might make actually language learning especially valuable for autistic people.
Transcript here Call for participants Research page
In the second of two podcasts on the general theme of bilingualism and autism, Sonny & Fergus talk with Rachael Davis (@RachaelVDavis) about her work looking at the benefits of bilingualism on child development.
Transcript Rachael's research
We talked to Maggi Laurie (@_mlaurie) at the University of Edinburgh about how autistic children play, the impact of technology on social interaction, and the development of joint attention.

Transcript
Maggi's project page
Cameron Maitland (@c_a_maitland), a PhD student in Edinburgh, talks with Sonny & Fergus about his work on social identification and the mental health of autistic people.

We discussed the autistic community and other communities, the value of social connections and some parallels between the neurodiversity movement and the movement for the rights and acceptance of gay people.
Transcript
https://soundcloud.com/amasepodcast

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In The AMASE Research Podcast, AMASE members talk with autism researchers, and autistic people connected with research, about their work. We are interested in what autism research means for autistic people, and how autistic people are involved in directing and prioritising research. Subscribe to the RSS feed, listen on SoundCloud, or read transcripts.

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Autistic Adults’ Experiences of Counselling

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Autistic Adults’ Experiences of Counselling

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In December 2020 we published a report, based on a questionnaire carried out at the start of the year, investigating autistic adults' experiences of counselling and related talk therapies. You can access the full report and summarised versions below.

Jump to recommendations section.

This report follows on from the AMASE 2018 report 'Too complicated to treat'? Autistic people seeking mental health support in Scotland.

We also held an online presentation of the report with a Q&A. A recording of the event is here:

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"You need support, validation, good coping skills. You need and deserve acceptance": Autistic Adult Experiences of Counselling [summarised version]
Publication date: 28th December 2020 Authors: Sonny Hallett & Colin Kerr With the support of AMASE (Autistic Mutual Aid Society Edinburgh)

www.amase.org.uk
Autistic people are more likely than non-autistic people to suffer from mental health difficulties, but they are also likely to encounter problems when trying to access counselling to help with their mental health. We used a survey to collect the experiences of autistic adults who have accessed counselling. We asked respondents what their counselling experience was like; what worked well, what didn't work well, and what changes they'd like to see in counselling approaches for autistic people. We also interviewed some counsellors about their experiences of working with autistic clients to add extra background to our findings.

The results suggest that there are specific accommodations and approaches that could be really helpful for a lot of autistic people in counselling, and also that there are consistent problems that come up for a lot of autistic people when counselling doesn't go so well.

About the authors
Sonny is a co-founder and chair of AMASE (Autistic Mutual Aid Society Edinburgh), an independent Autistic People's Organisation based in Edinburgh, Scotland. In 2018 Sonny co-authored a report on barriers for autistic people in accessing mental health services in Scotland ( www.amase.org.uk/mhreport). They are currently training to become a qualified counsellor.

Colin is an experienced mental health counsellor based in Edinburgh. He works predominantly with adults who have lived through adverse or traumatic experiences growing up and who struggle with a range of psychological, physiological and emotional distress. He has an interest in the overlap of autistic experience and distress.

Both authors, and the overwhelming majority of readers, advisors and contributors to this report, are all on the autism spectrum.

Funding and support
AMASE (Autistic Mutual Aid Society Edinburgh) supported the authors in promoting the survey. There was no external funding.

The key themes

Many autistic people want clearer information around counselling services: how it works, what it's for, what's 'allowed' and what isn't.

Counselling works much better when it is sensorily and physically accessible for autistic people.

Counsellors sometimes don't know how to read autistic people's emotions, or might struggle with their communication differences, especially when they are in distress.

Counselling can go better when counsellors and autistic clients work together to figure out the approach, and solve problems that come up. Autistic clients might need more support to feel able to do this.

Counsellors, including some autism specialists, sometimes have out of date or unhelpful ideas about autism, or don't know enough about autistic experiences and important issues that affect autistic people.

In this report, we use quotes from our participants to illustrate the findings from our survey, highlighting both things that seem to go wrong more often, and things that have often been helpful in counselling for autistic people. The report ends with a list of recommendations for counsellors, counselling services, and related mental health professionals on ways they can improve their services for autistic people in three areas: accessibility, practice approaches, and understanding.

The survey and sample
The authors shared the survey online and through AMASE (Autistic Mutual Aid Society Edinburgh)'s networks. The survey was active for two weeks, and open to autistic people aged 18+ who had experienced talk therapies for their mental health. Responses were anonymous. 66 people responded to the questionnaire. We also interviewed four counsellors who have worked with autistic clients, invited through the authors' networks, to provide additional background to our findings.

The results

We read through the survey responses and identified common themes that they brought up. We then grouped the themes into five broader categories:
The Counselling Experience
"One thing that would have helped is if the counsellor could have explained what I could expect from them"

"It was very difficult to adjust to and to start to feel comfortable talking to someone I didn't know. The communication went quite poorly at the beginning because I was incredibly anxious and scared"

Anxiety and uncertainty are big parts of the autistic experience. Participants highlighted the importance of clarity and detailed information around the counselling experience; what to expect, what it is, and what it isn't. It is also clear that starting counselling, and meeting a new counsellor or service, can be an extremely anxiety-inducing thing for many autistic people, many of whom might also be worried because of difficult past experiences with counselling or related services, especially in being misinterpreted, 'written-off', or even turned away. The need for warmth, explicit reassurance, and feeling 'seen' and believed from the very beginning is incredibly important for countering many of these early fears, uncertainties and misgivings, and in building a more trusting and productive counselling relationship.
The Space
"My current therapist has been very careful and clear about settings and comfort in the space. She'll turn the lights down or off if I need that, she keeps her voice low, she keeps her body in a steady posture. She has weighted blankets and fidgets in her office. I feel like I'm in control of my presence in her office, which makes it easier to feel safe and be able to be vulnerable in ways that work for me. Previous therapists have never offered this level of accommodation, and it never even occurred to me to ask. Rooms were always bright and cheery, and they put me on edge in ways I didn't understand at the time."

Light, noise and smells are common sensory challenges for autistic people. The sensory environment: lighting, sound, texture, smell; communication requirements (such as difficulty with using the phone); and how seating is arranged in the room, were some of the most common areas of either difficulty or useful collaboration on accommodations raised by our respondents.

When it comes to these access needs, respondents wanted counsellors who were proactive, made suggestions, validated their needs, and listened to and understood their requests. They also sometimes struggled with feeling comfortable with making requests, or knowing what would help or what is possible. Help and encouragement to self-advocate, ask questions, and collaboratively problem-solve was appreciated.
Feelings and Distress
"We might be having a harder time than it looks like on the surface. We might hold things inside because we worry we are overreacting. In the past, others may have made us feel like a burden, so we might do a lot of internal labour without telling our therapist. We might not be able to articulate our feelings. We might need to communicate nonverbally."

"[...] I am often unaware of my own emotions or unable to describe them, I am so overwhelmed by emotions I have physical symptoms of distress, and I am exceedingly upset when my routines/plans are disrupted."

"just because someone may be very skilled at masking doesn't mean they aren't in pain."

Based on the frequency with which emotions, meltdown and distress were mentioned by our respondents, there is an urgent need for practitioners to believe clients when it comes to distress, and also for them to understand more about autistic distress and how it might manifest.

Participants reported being misread or disbelieved by mental health professionals when it came to anxiety and distress, and also expressed worry about that happening more in counselling due to difficult past experiences. Careful checking in on feelings by the counsellor, validating emotions, and not making assumptions about how the client is feeling, were seen as helpful and important by many participants.

Respondents also talked about difficulties with naming or identifying their own emotions, which sometimes made the counselling process difficult if they were not given adequate support and understanding. It was also a productive point of exploration for some in the counselling process.

Many also highlighted emotional regulation as an area that they wanted help with through counselling.
Working Together
"[What was helpful was a] willingness to adapt and discuss why we were doing what we were doing "
"In the early sessions we spent a lot of time discussing how my autism affected me, what sensory issues I have, how my communication is affected etc so we can understand where my difficulties come from and how best to work on them."
Counselling training rarely includes working with neurodivergent individuals, and the specific needs and challenges they may bring. Participants particularly valued flexibility in their counsellors, in working together and adapting their approaches to suit their needs and circumstances. Respondents wanted a good rationale for the work they were doing or approaches used, and some talked about struggling with instructions or questionnaires that were unclear or didn't make sense to them.

Communication and processing differences might mean that sessions could benefit from being longer or shorter or structured differently for different clients. Other approaches to processing and communication were also mentioned as useful by respondents, such as art therapy.

A lot of the themes around working together relate to the building of the counselling relationship, in a way that empowers the autistic client to advocate for themselves, and feel in a position to take the lead or more actively collaborate. The counsellor is ideally flexible, open, willing to find creative solutions, and potentially understands enough about some of the context around autism and related themes to be a ready and able collaborator.
How Much Do You Know About Autism?
"At first there were a lot of sessions of just her [the counsellor] learning about autism and trans issues, from me and from her own research [...] in hindsight I think it was actually a really good way to start building that early therapeutic relationship and for her to get to know me"

"Therapy gave me the confidence to start making connections outside of session and ultimately allowed me to find my tribe. I firmly believe I would not be here today had I not connected with a therapist. I had virtually lost hope. Talking gave me hope, and for that I am immensely grateful."

Many participants brought up concerns around their counsellors not knowing enough about autism, or having outdated, overly rigid, or inaccurate ideas. Sometimes this was a particular issue with counsellors who claimed some particular knowledge or experience of autism, especially if their experience was mostly around autistic children.

Views were divided on how much counsellors needed to know about autism to work well with autistic clients, and some did have very good counselling experiences with counsellors who knew little, but were open and willing to learn - with that dialogue also adding to the collaborative process. However, many respondents also expressed particular frustration around counsellors not knowing enough about specific issues around autism and gender, communication, sensory issues, executive functioning, emotional regulation, etc. Some also highlighted the inequity of having to educate one's counsellor on basic concepts, especially with limited time and energy available.

Many respondents talked about a need to understand and accept themselves more, and wanted help with that process through counselling, along with a hope of finding one's 'tribe' or community. This, along with what they want counsellors to understand better, and the challenges many have already encountered with health professionals, points to a need for counsellors working with autistic clients to start with some basic reference points and points of understanding, along with an openness and willingness to explore with the client.

Conclusions & Recommendations

Our survey has highlighted a number of issues relating to autistic access to, and participation in, talk therapies. These include barriers to access, such as sensory challenges, requiring phone communication, and lack of clear information and guidance; communication barriers, such as practitioners misunderstanding or not believing autistic people, or autistic clients struggling to get appropriate support in getting their needs across; and barriers related to autism awareness and understanding amongst practitioners, including lack of knowledge amongst counsellors, outdated or inaccurate knowledge, including amongst those described as autism specialists, and lack of broader knowledge in areas related to autism, such as gender, co-occurring conditions, etc. These themes are also consistent with previous research into autistic barriers to healthcare more generally.

This report also covers some newer ground in delving deeper into the specific impacts of these barriers on autistic clients in a counselling context, as well as exploring ways that talk therapies can be adapted to be better for autistic clients. It is clear that there are areas of excellent practice happening that are changing lives, and those approaches need to be better publicised and understood. There is also far too much troublingly poor practice that is at best turning individuals off further talk therapy, and at worse, further traumatising autistic people.

Autistic people are a vulnerable population when it comes to mental health difficulties and outcomes, and also disproportionately impacted by barriers to appropriate social and mental health support, so this is a particularly important area for practitioners and health care providers to understand better.

From the findings of this report, the examples of good practice and negative experiences, as well as other input from our respondents, we propose the following recommendations:
ACCESS

There needs to be better provision of clear information, and better education, on what counselling is, what it's for, and what to expect for autistic people. There could also be better support for autistic clients in how to get the most out of counselling, and how to self-advocate in counselling situations.

Counselling services need to be more accessible for autistic clients, which can mean that communication methods need to be flexible, and there is more support around the practical aspects of accessing a service.

Counselling spaces need to be adaptable for the sensory needs of autistic clients, and counsellors should be mindful of these needs when working with autistic clients, and proactive in finding solutions to accessibility issues.

Homework and paperwork (forms) provided in sessions should have a sound rationale for the client, and need to be clear and accessible. Alternative approaches should be explored when necessary.

PRACTICE

Practitioners working with autistic clients need to be mindful of differences in communication and emotional cues. Counsellors should be proactive in checking in, and autistic clients need to be believed when they say they are in distress.

Counsellors working with autistic clients should be flexible and open in their approaches, and able to adapt their practice to the client, including with communication styles, session structure, overall approach, etc.

Collaborative approaches that encourage self-advocacy, self-acceptance and self-understanding may be particularly helpful for many autistic clients. This often needs to start with clarity, reassurance, and a sense of safety from the therapist.

Practical solutions and understanding, especially around interpersonal issues, sensory and emotional regulation, and executive functioning, may be really valuable for some autistic clients, but caution must be taken that the therapist is not attempting to (purposefully or inadvertently) 'make the client more neurotypical', or impose their own normative values or assumptions.

UNDERSTANDING

Counsellors should have some understanding of the life-context of what being autistic might mean for a person, including a grounding in what is/isn't accurate about autism (particularly common misconceptions), and what common challenges autistic people might experience, both socially and more personally.

Practitioners should be aware of issues around expressing and identifying emotions (including shutdowns, meltdowns and burnout) and not apply neurotypical standards to reading or assessing autistic emotions.

Counsellors should be aware of the Double Empathy Problem (see link) when working with autistic clients.

Counsellors should be aware of gender and LGBT+ issues, particularly women and gender minorities, and how those issues relate to the autistic population.

It would be helpful for counsellors to have some understanding of the ways in which autism can intersect with commonly co-occurring conditions and issues, particularly trauma, anxiety, and physical health issues.

It would be helpful for practitioners to understand something of the broader context around autistic community, neurodiversity, social model of disability, and the value for some of forming an autistic identity and/or 'finding their tribe'.

Counsellors should be more educated on autism through first-person accounts of autistic experience, and writing, training and research led by autistic people. They should also 'hold this knowledge lightly', acknowledging the heterogeneous nature of the autistic population, and be open to new information and ideas.

We also hope that this will encourage autism-related training, led by autistic people, to be a part of counselling training curricula, and that there might be more support for greater autistic and otherwise neurodivergent representation at all levels of counselling and mental health care - as practitioners, trainers, supervisors and policymakers. In particular, recognising the importance of training led by autistic counsellors.

Autistic people may be a neurological minority, but they are a significantly under-served one. We also believe that some of the recommendations and findings in this report can be helpful more generally in encouraging greater accessibility, flexibility, and understanding by therapists and therapeutic services, in better-serving a far broader range of marginalised communities. The diversity of the autistic population, and the challenges to talk therapy approaches and practitioners that it brings, have lessons to teach counsellors working with anyone.

We hope that the findings and recommendations from this report will help to encourage practitioners to seek more information on autism, the autistic community, and ways to make their practice more accessible for autistic clients. If there's one thing the respondents' generous contributions have put across, it's that autistic people have a wealth of knowledge about what we need and how we'd like to be supported, but suffer too often from not being listened to, believed, or understood - we hope that this will also make clear the need for practitioners seeking further information and resources to prioritise seeking out writing, research and training by autistic writers, practitioners and trainers.
This is the summarised version of the report. To read the full version with more detail and quotes from participants, references and appendix, please go to [link] Acknowledgements
We would like to thank all of our survey respondents, interviewees, advisors and readers for making this report possible. We have asked all of those involved if (and how) they would like to be acknowledged. Thank you to the following (listed in no particular order), as well as to all of those who wished to remain anonymous.

C.L. Bridge, Jenny Quinlan, SJ, KEB, Lexi Orchard, Ellie Tait, Sarahdbristol, Ahjohnmusicsavant, Kat Bhend, Fergus Murray, Mary Lye, CM Scottish Highlands, Angeline B. Adams, LynneR309, Helen, AspieJedi, Soazig Métrope, Elkie Kammer, Dr Mary Doherty, Adult autistic man diagnosed in my 30s, Mónica, Georgia, Sara, Kay L, Michael Crosby, AMASE members and committee, Stephen Hallett, Shirley Moore, Kabie Brook, Catherine Crompton

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Autistic Adults' Experiences of Counselling

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In December 2020 we published a report, based on a questionnaire carried out at the start of the year, investigating autistic adults' experiences of counselling and related talk therapies. You can access the full report and summarised versions below. Jump to recommendations section. This report follows on from the AMASE 2018 report 'Too complicated to treat'?