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Sandhya Menon, Autistic/ADHDer developmental psychologist, on a revolution in our understanding of autism and ADHD.

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Sandhya Menon, Autistic/ADHDer developmental psychologist, on a revolution in our understanding of autism and ADHD.

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‘We can look to the AuDHD community to learn more about what the balance of autism and ADHD feels like’ | BPS

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Sandhya Menon, Autistic/ADHDer developmental psychologist, on a revolution in our understanding of autism and ADHD.

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AuDHD Flourishing: The monotropic neurotype that is Autism + ADHD holds strengths and challenges. Typical advice often doesn't work for us.

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AuDHD Flourishing: The monotropic neurotype that is Autism + ADHD holds strengths and challenges. Typical advice often doesn't work for us.

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Podcast · Mattia Mauree · The monotropic neurotype that is Autism + ADHD holds strengths and challenges. Typical advice often doesn’t work for us.Your AuDHD host, Mattia Maurée (they/them), shares research, lived experience, and practical advice from coaching over 200 neurodivergent folks. They focus on feeling better first, before tackling the big life design questions. You’re doing great, you belong here, and it’s possible to feel a lot better. Hosted on Acast. See acast.com/privacy for more information.

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What is auDHD? Autism and ADHD Combined | The Neurocuriosity Club

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EXPERIENCES OF AUTISTIC JOY
FINDINGS FROM A PARTICIPATORY
RESEARCH PROJECT
PRESENTED BY ELLIOT WASSELL 

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EXPERIENCES OF AUTISTIC JOY
FINDINGS FROM A PARTICIPATORY
RESEARCH PROJECT
PRESENTED BY ELLIOT WASSELL 

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Autistic Parents UK members share what Autistic joy means to them.

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Autistic joy webinar by Neurodiverse Connection

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Autistic joy webinar by Neurodiverse Connection

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Why Standardising Objects of Reference Can Render Them Meaningless by Joanna Grace

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Why Standardising Objects of Reference Can Render Them Meaningless by Joanna Grace

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Why Standardising Objects of Reference Can Render Them Meaningless

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I have been to settings who proudly tell me they have a standardised set of Objects of Reference that everyone in their setting uses.

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Reframing Autism Double Empathy Explanation 

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Reframing Autism Double Empathy Explanation 

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Currently, Autism is classified as a diagnosable 'neurological disorder'.

Most non-autistic people think of Autistic people as 'lacking empathy' and having impaired 'theory of mind' (that is, understanding another person's state of mind). Thus, the diagnostic criteria for Autism includes 'reduced sharing of interests, emotions, or affect' and 'absence of interest in peers'. This perspective means that non-autistic people often view Autism as a defect.

Dr Damian Milton is an Autistic academic and father. He proposes a different interpretation for the disconnection between Autistic and non-autistic people, which he calls the 'double empathy problem'.*

This summary helps non-academics to understand Milton's 'double empathy problem'.

The 'double empathy problem'

Milton's theory of 'double empathy' proposes that Autistic people do not lack empathy.

Milton argues that Autistic people experience the world and express emotions differently to non-autistic people. We communicate, experience and display emotions, interact with others, form relationships, and sense the world around us, differently to non-autistics. That doesn't mean that we don't have emotions or feel empathy.

But it makes it difficult for non-autistic people to understand and to empathise with us. And us with them.

Autistic differences lead to different life experiences, which create a kind of empathy divide.

So, just as it could be said that Autistic people lack 'social insight' into non-autistic culture and communication, it could also be said that non-autistic people lack 'social insight' into Autistic culture and communication.

Milton calls this disconnect a 'double problem', because both Autistic and non-autistic people experience a lack of understanding for the other group.

In other words, empathy is a 'two-way street'.

The impact of the double empathy problem

The empathy divide is experienced by both Autistic and non-autistic individuals. But these groups are not equally affected by the divide.

Because the non-autistic way of communicating and empathising is the typical, expected way, it is accepted as 'normal' and 'correct' by most people.

That means that the atypical, unexpected ways in which Autistic people communicate and empathise are often rejected as 'different' and 'incorrect'.

Milton suggests that many non-autistic people assume that their majority, familiar way of empathising is superior or preferable to the Autistic way.

This perception has meant that non-autistic people often expect Autistic people to learn non-autistic culture and communication. Indeed, Autistic people are frequently given 'treatment plans' to help them to understand non-autistic perspectives.

But non-autistic people do not expect themselves to understand or learn Autistic perspectives.

Milton's point is that we could see non-autistic people as lacking empathy for Autistic people.

What does that look like in action?

An everyday example of a non-autistic lack of empathy for Autistic experiences is the reaction from non-autistic people when we mention we are Autistic. Often, the automatic response from non-autistic individuals is, 'we are all a bit on the spectrum'.

The non-autistic person's response is usually intended empathetically. It is meant to 'normalise' our Autistic experience.

But this non-autistic response presumes that Autistics don't want to be Autistic (since, doubtless, the non-autistic person does not want to be Autistic themselves).

Rather than empathetic, then, this response is highly offensive to the Autistic community since it undermines Autistic experience, authenticity, and identity.

To the Autistic recipient, the non-autistic person is displaying a 'social deficit' or 'lack of empathy' in not seeing the potential offence in their words.

Returning to Milton's essay, we note that Autistic individuals say that, in fact, it is they who have been expected to make - and have actually made - the greater effort to understand the feelings of the non-autistic population.

'One could say that many autistic people have indeed gained a greater level of insight into NT [non-autistic] society and mores than vice versa, perhaps due to the need to survive and potentially thrive in a NT culture. Conversely, the NT person has no pertinent personal requirement to understand the mind of the "autistic person" unless closely related socially in some way,' Milton explains.

The value of the double empathy theory

The value of Milton's theory is that it challenges the notion that Autistic people lack 'theory of mind'. It reframes the disjunct between Autistic and non-autistic communities. We don't need to think of superior and inferior ways of being. Instead we can see our co-existence as reliant on reciprocity and mutuality.

Autistic empathy is no less compassionate, no less thoughtful, no less 'human' than non-autistic empathy: it is simply different.
*Milton, D. E. M. (2012). On the ontological status of autism: The 'double empathy problem'. Disability & Society, 27(6), 883-887.

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Milton's 'double Empathy Problem': A Summary for Non-academics - Reframing Autism

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Currently, Autism is classified as a diagnosable 'neurological disorder'. Most non-autistic people think of Autistic people as 'lacking empathy' and [...]

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This blog was written by PAPYRUS supporter, Viv Dawes. Viv is a lived experience Autistic advocate, trainer and author. She has 25 years of experience working with vulnerable people, including in the criminal justice system.

If you speak with autistic people about fatigue, many may share experiences of enduring exhaustion throughout their lives. The exhaustion and consequent effects upon our lives that we experience are not because we are autistic, but because many environments are designed for neurotypical brains and not brains that diverge; these environments can be challenging for autistic people because the neurotypical demand of the climate outweighs our capacity as autistic people.

Autistic brains are more likely to be what's known as 'monotropic'. Monotropism is a person's tendency to focus their attention on a small number of interests at any time, tending to miss things outside of this attention tunnel. In our focus tunnels, everything can be very intense; therefore, constantly changing our focus in certain environments can be debilitating and exhausting.

More information about monotropism can be found here.

Autistic burnout is something the autistic community has been aware of for many years, but only recently has it started to be recognised by some professionals. Due to the tendency to identify individuals as autistic only at moments of crisis, many, particularly women and individuals of marginalised genders, may have previously received misdiagnoses such as depression, anxiety, bipolar disorder, borderline personality disorder or other conditions in their past experiences of crisis. Dr Judy Eaton provides information on her website regarding the misdiagnosis of autistic people.

What is Autistic burnout?

According to Judy Endow, autistic burnout "is a state of physical and mental fatigue, heightened stress and diminished capacity to manage life skills, sensory input and social interactions, which comes from years of being severely overtaxed by the strain of trying to live up to demands that are out of sync with your needs".

For some, autistic burnout is so harrowing and so very debilitating that it is life-changing, with many autistic people unable to attend or engage with school, college, university or work. It has affected individuals so much that many lose the ability to speak (a sign of shutdown), and some even lose their voice for some time. Many don't leave their bedrooms for months on end, cannot engage with anyone and don't leave the house either. During burnout, they might lose many of their brain's executive functions (working memory, emotional regulation, decision making, task initiation, etc), and their sensory system goes into overload, often leading to increased meltdowns and shutdowns. All this takes its toll and the cost is sometimes so high for many autistic people.

Many, as did I with my son, assume it is depression. It shares so many crossovers with depression and other conditions (including Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and Paediatric Acute-onset Neuropsychiatric Syndrome (PANS)- in children). The problem is that autistic burnout does not respond to medical treatment or mental health treatment, and treating burnout as depression can be debilitating for the autistic person. The autistic person's brain is in extreme survival mode and needs the rest their body and brain are desperate for to experience recovery.

How do I know I am experiencing autistic burnout?

The main characteristics of autistic burnout are:

Extreme fatigue

Withdrawing more and more from social situations

Loss of executive function skills (working memory, emotional regulation, decision-making, focus, task initiation, self-control, etc)

Sensory overload increases significantly

Anxiety increases

Increased shutdowns and meltdowns

Some may also experience intrusive or suicidal thoughts

Autistic burnout does not happen overnight. It might take a prolonged period to develop, but can become cyclical and hard to get out of unless significant life changes are made. The person needs rest (psychological, physical and physical) to lower demands regulated by spending time with their interests and passions. Recovery takes time, sometimes a long time.

Why do autistic people burn out?

Many people talk about burnout, and often they are referring to occupational burnout and burning the candle at both ends; this can happen to anyone. Autistic burnout, however, is linked to more complex issues and is mainly caused by:

Prolonged autistic masking (which is often fawning - people pleasing, putting other people's needs first),

Prolonged sensory overload, which can be traumatising.

Too many demands and expectations that outweigh the autistic person's capacity and energy levels.

The impact of autistic burnout

Some autistic people's experience of autistic burnout is very extreme, leading to a significant period of crisis. They might seem to be speeding up and manic. If, for example, they are AuDHD (autistic and ADHD), then executive functioning differences in the ADHD brain make emotional regulation much more difficult. Along with the possibility of Alexithymia* and interoception* differences- this can also make understanding how exhausted they are challenging for the individual.

Struggling to recognise their exhaustion and difficulty in finding rest and balance can lead an autistic person to push themselves too far, often resulting in a crisis. Inability to engage fully in their interests -activities that usually help regulate and provide comfort for their unique way of thinking/monotropic brains -may sometimes prompt seeking control through substances to manage overwhelming thoughts and emotions. However, this reliance on substances can heighten hyper-vigilance and paranoia, potentially increasing the chances of experiencing hallucinations. It's important to note that hallucinations, not uncommon in autistic individuals due to brain chemistry variances, might manifest as intrusive thoughts or sensory overload.

*Alexithymia means the inability to recognise or describe your own emotions.
*Interoception is a person's sense of internal feelings (emotions, pain, hunger, thirst, etc)

What can help autistic burnout?

If you're going through what you think might be autistic burnout, the most important thing to know is that you're not alone. It's a common experience among many autistic individuals, but recovery is possible with time - rushing won't help. Connecting with other autistic individuals can be beneficial; it increases the chances of feeling accepted and valued while reducing the need to mask. You'll find various online groups and social media platforms to connect with like-minded individuals.

Recovery from burnout is about your nervous system getting out of survival mode and feeling safe again. Some strategies that might help ease autistic burnout include:

Connecting with other autistic people online. This can be especially beneficial if there are no in-person outlets.

Resting and not pushing yourself is essential, as recovery takes time.

Lower demands and expectations. What needs to stop? What demands and expectations are exhausting you? This could include people, environments, tasks, experiences.

Understanding what helps you regulate your emotions and sensory system is important.

Gaming, creativity, sudoku, music, sensory aids, weighted blankets, pets, walking, watching your favourite films or TV, being in nature, reading, etc. are just some things that can help some autistic people.

Allowing yourself to stim whenever you need to (stimming helps with regulation).

Spending time with your passions and interests can help you feel safe and regulated.

If you are AuDHD, then you might want to consider ADHD medication as it can help with executive functioning differences such as emotional regulation. This would have to be prescribed by the team who diagnosed your ADHD or a team local to you that does this (your GP could refer you.

Learning about how to be and celebrate your authentic autistic self; often this is easier with other autistic people.

If you are already in crisis, please reach out and talk to/communicate with someone, such as calling, emailing or texting PAPYRUS's helpline, HOPELINE247.

If you are struggling with substance use, there are people who will listen and have often been there themselves. Finding your local drug and alcohol team could be a good place to start. If you explain to them that you are autistic/AuDHD, they may have workers with lived experience and particular groups or services for neurodivergent clients.

More information on autistic burnout is available on my website here, including free resources to download.

Information can also be found on these pages:

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Understanding autistic burnout | Papyrus UK | Suicide Prevention Charity

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Understanding autistic burnout | Papyrus UK | Suicide Prevention Charity | Learn More

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You Might Not Recover from Burnout. Ever.

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What grows from the ashes of your old life?

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I have created a downloadable pack of over 120 flashcards as a result of discovering an abundance of unique vocabulary within the neurodivergent dimension. If you’re new to exploring neurodivergence, then it can be a steep learning curve, so I hope this might come in handy as a different way to learn about the vocabulary, phrases, concepts and acronyms in this topic area. All images in the PDF are clickable. The resource contains 128 of the most common words that I can think of! DOWNLOAD YOUR F

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The benefits of fidgeting  - School for Fidgets (Saskia Grassie)

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The benefits of fidgeting  - School for Fidgets (Saskia Grassie)

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chewing for learning

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FREE DOWNLOADABLE PDF OF OVER 120 NEURODIVERGENT TERMS, WITH BEAUTIFUL AI-FREE ILLUSTRATIONS

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FREE DOWNLOADABLE PDF OF OVER 120 NEURODIVERGENT TERMS, WITH BEAUTIFUL AI-FREE ILLUSTRATIONS

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I have created a downloadable pack of over 120 flashcards as a result of discovering an abundance of unique vocabulary within the neurodivergent dimension. If you’re new to exploring neurodivergence, then it can be a steep learning curve, so I hope this might come in handy as a different way to learn about the vocabulary, phrases, concepts and acronyms in this topic area. All images in the PDF are clickable. The resource contains 128 of the most common words that I can think of! DOWNLOAD YOUR F

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Am I Experiencing Autistic Burnout? - Emergent Divergence

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Am I Experiencing Autistic Burnout? - Emergent Divergence

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Autistic burnout arises from the relentless demands of a non-accommodating world, leading individuals to exhaust their cognitive resources. The concept of energy accounting, illustrated by spoon theory, helps manage daily energy like limited spoons. Recovery requires proactive rehabilitation, gradually rebuilding capacity rather than merely resting, transforming the experience into a path of growth.

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Highlighting the link between Autism & Suicide

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Highlighting the link between Autism & Suicide

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Understanding how routines can help Autistic people by Fergus Murray

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Understanding how routines can help Autistic people by Fergus Murray

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Understanding How Routines Can Help Autistic People Thrive

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There are dangers to assuming autistic people need routines, without understanding why. Otherwise, they can do more harm than good.

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An Affirming Approach to Supporting Interoception, Feeding Challenges & ARFID

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An Affirming Approach to Supporting Interoception, Feeding Challenges & ARFID

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Follow along this month as we talk about the links between interoception, feeding challenges, and ARFID, and how we can implement affirming supports.

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Introduction to Autism and Trauma

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Updated: Jul 28

This is a neurodiversity affirming guide for parents and professionals around supporting young autistic people with trauma.

Contents:

Acknowledgements:

This guide was developed in coproduction with over:

350 autistic young people from the Spectrum Gaming community

with special thanks to:

How did people contribute to this?

Dr Naomi Fisher

Kirsteen Wilshere

Nanny Aut

This is a neurodiversity affirming guide for parents and professionals around supporting young autistic people with trauma.

Contents:

Acknowledgements:

This guide was developed in coproduction with over:

350 autistic young people from the Spectrum Gaming community

with special thanks to:

How did people contribute to this?

Over 350 autistic young people, 150 autistic adults, 700 parents and 80 professionals joined focus groups, attended live writing sessions (where we meet and write together), had 1:1 interviews or completed surveys to share their views, and one of the results of this work is this guide to autism and trauma.

This resource is truly coproduced, and has the views of autistic young people at its heart. In order to ensure it is factually accurate, the work we did was reviewed by experts in the area:

And their edits were reviewed by young people on an ongoing basis to ensure they helped to make the guide better, while also keeping the authenticity of young people's views/insight.

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This is a neurodiversity affirming guide for parents and professionals around supporting young autistic people with trauma.

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Speaking and AAC use - ability, capability and capacity

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Speaking and AAC use - ability, capability and capacity

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More than anything, I want to be understood by the people around me. I find using my speech extremely difficult in many parts of my day-to-day life. However, I've always lived somewhat of a paradox. In other parts of my life, my speech flows freely to the point where I regularly speak at events and even co-host a podcast.

Throughout my life, I've had multi-year periods with little to no speech and periods where my speech has been reliable. To say the least, it's been very confusing. Making sense of my speech has taken a long time. In the last few years, we've had a bit of a breakthrough. My speech today is the best it's ever been. But more than that, when my speech isn't so great, we have a process to understand why and identify ways to improve it.

In this article, we will explore the approach we've been using and how we've been applying it to help me thrive.

But before we dive into that, I should properly introduce myself and Lion.

Hello, my name is Jamie

I'm autistic, and I'm never seen far from my plush sidekick, Lion.

Lion is my plushie companion, he never leaves my side and helps make the world a slightly more understandable place. Lion is part of the way that my "disability" affects me, and from this + Lion seemed like an ideal name and description for what I am doing. When using "we" in this article, I mean myself (Jamie) and Lion.

I'm a digital accessibility specialist, software engineer, and maker. I've held senior & leadership roles within the BBC and worked with a wide range of companies, from banks to game studios. Millions of people use my code every day. It's my engineering background that led to the breakthrough in my speech. When something goes wrong in engineering, we use a process called 'root cause analysis' to understand what has happened. The better we understand why something didn't go to plan, the more we can do to improve it in the future. We've been using the same approach with my speech. We needed a way to identify why my speech was difficult and what we could do to improve it.

For me, it all came down to the subtle difference between ability, capability, and capacity.

Ability

Sometimes I am unable to speak in the sense that I don't have the skill needed to communicate with speech in that context. Everyone is unable to speak in some context. For example, imagine you're in France and don't speak French. It's an 'inability' because it's a skill you simply don't have. I am unable to speak French. But I am also unable to speak about some concepts like pain. When we find I am unable to speak about something, we need to focus on building my understanding of the concepts. We need to build my skills in that area. For pain, I worked with the support folks in my life to understand the different types of pain and learn how to name them. Initially, we used colors (purple pain, brown pain, etc.) each time I was in pain, and we recognized a pattern over time. Purple pain was a 'sharp' pain. Brown pain was a 'bruising' pain. In a nutshell, if I'm unable to do something, we respond by developing the skills.

Capability

I can't use my abilities every day. Just because I am able to do something once doesn't mean I can do it all the time. In other words, I might not be capable of doing something on a specific day or time. My capability for speech varies enormously. It's impacted by many different things, such as environment, structure, power dynamics, and pressure. My capability for speech drops sharply at the cafe, where the environment is loud, busy, and unpredictable. I'm simply overwhelmed. Structure is more subtle. Structure impacts my capability for speech when it comes to working out what or when to say things. I can almost always sing or repeat rhyming phrases as it's an easy structure. A three-way conversion has a much more complex structure. That will often impact my capability for speech.

Power dynamics and pressure are even more subtle than structure; how we speak changes depending on context. For example, speaking to a police officer or a social worker differs from speaking to a friend. The weight of a situation will often impact my capability for speech. I've never had a working speech during a 'social care review.' But I can quite easily talk about it on a stage a week later. Giving a presentation is easy as its structure is simple, and there aren't any life-changing consequences if I pick the wrong word or phrase.

In a nutshell, external factors impact my capability for speech depending on the day and situation. If I'm incapable of speech, we need to work out what the barriers are and resolve them.

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Speaking and AAC use - ability, capability and capacity - AssistiveWare

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Learn about ability, capability, and capacity in AAC. Jamie + Lion shares insights for improving communication and overcoming challenges for disabled people

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Intermittent, unreliable, insufficient, and expensive speech

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Intermittent, unreliable, insufficient, and expensive speech

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Intermittent, unreliable, insufficient, and expensive speech - AssistiveWare

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This article explores some of the varied experiences autistic people can have navigating the space between non-speaking and fully speaking.

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Premenstrual Dysphoric Disorder (PMDD) is a severe negative reaction in the brain to natural changes in hormone levels in people who menstruate (have periods)

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The Autism from Menstruation to Menopause study hopes to make Autistic people’s reproductive health and healthcare experiences better.

This research project is based at Swansea University and funded by the Wellcome Trust.

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The Autism from Menstruation to Menopause study hopes to make Autistic people’s reproductive health and healthcare experiences better. This research project is based at Swansea University and funded by the Wellcome Trust.

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https://youtu.be/yku0QpNPwNE?si=CRdptwCkzY1m_g6Z

Lovely animation by Chris Bonello, exploring Double Empathy. And no, Chris does not think autistic people are rude :)

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Why are autistic people SO RUDE? (Truly Awful Animation)

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Map of Monotropic Experiences - Stimpunks Foundation

By Helen Edgar (Autistic Realms)

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This map highlights 20 common aspects of monotropic experience. How many do you experience?

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Untold struggles of Neurodivergent Black boys in schools

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Untold struggles of Neurodivergent Black boys in schools

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The untold struggles of Neurodivergent Black boys in schools — Neurodiverse Connection

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The untold struggles of Neurodivergent Black boys in schools — Neurodiverse Connection

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Honoring Black History Month, NdC Associate Warda Farah explores the intersection of Black and Neurodivergent identity, and reflects on how the dual marginalisation faced by Black Autistic individuals is further compounded for boys in school settings. Warda is the creator and host of NdC’s monthl

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Messages about being autistic from autistic young people

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Messages about being autistic from autistic young people

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Messages About Autism (padlet.com)

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https://youtu.be/Kd_ctnQAwOo?si=oqCmP3sBqKnAqnkk

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Situational Mutism 2.0 | Autisticality

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See Communication differences, Semi-speaking/ Part-time AAC user, Situational Mutism

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See Communication differences, Semi-speaking/ Part-time AAC user, Situational Mutism

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https://youtu.be/z3YQ9F4SFAQ?si=JASqBvsyqDQuhZXQ

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School tool kit for Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome

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School tool kit for Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome

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Standard Cookies These cookies are needed for essential functions such as making payments or logging in. Standard cookies can't be switched off. Analytics These cookies gather information such as how many people are using our site or which pages are popular to help us improve customer experience.

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@neurowild_ • Instagram photos and videos

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@neurowild_ on Instagram: "*Resources now available as a download*

This resource, as well as 8 others are now available to buy and download as a bundle on Teachers Pay Teachers. Setting up an account is free. If you search ‘double empathy problem nutshell’ you will find the bundle containing ALL the comic strips that I’ve created so far 🙌🙌🙌

This bundle is for anyone who is keen to print and use these resources in a clinical/educational setting. Please feel free to continue using these online images however you please 😊

- - - - - - - - - - - - - - - 
Some extra thoughts about masking:

- the friendships a ND child makes when they are pretending to be completely different- how meaningful are they? Are they real?

- squirrels are often said to be inflexible, yet there are so many beavers out there who are unwilling to change their thinking and allow squirrels to be themselves? 

Important note: in some parts of the world, for some populations, UNMASKING autistic traits can be extremely dangerous. Parents in these communities may choose to teach their children to mask to protect their safety and their life. I 100% support their choice. 

Em 😊🌈✌️"

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1,038 likes, 69 comments - neurowild_ on September 22, 2022: "*Resources now available as a download*

This resource, as well as 8 others are now available to buy and download as a bundle on Teachers Pay Teachers. Setting up an account is free. If you search ‘double empathy problem nutshell’ you will find the bundle containing ALL the comic strips that I’ve created so far 🙌🙌🙌

This bundle is for anyone who is keen to print and use these resources in a clinical/educational setting. Please feel free to continue using these online images however you please 😊

- - - - - - - - - - - - - - - 
Some extra thoughts about masking:

- the friendships a ND child makes when they are pretending to be completely different- how meaningful are they? Are they real?

- squirrels are often said to be inflexible, yet there are so many beavers out there who are unwilling to change their thinking and allow squirrels to be themselves? 

Important note: in some parts of the world, for some populations, UNMASKING autistic traits can be extremely dangerous. Parents in these communities may choose to teach their children to mask to protect their safety and their life. I 100% support their choice. 

Em 😊🌈✌️". 

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@neurowild_ • Instagram photos and videos

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@neurowild_ on Instagram: "Teach me about Spoon Theory. In jellyfish form.

Note: Spoon Theory was created by Christine Miserandino in 2003 to help explain the fatigue of her chronic health condition, lupus. It has been adopted in more recent years to explain the mental fatigue often experienced by neurodivergent brains.

I DID NOT ORIGINALLY CREDIT SPOON THEORY TO CHRISTINE IN THIS POST, AND I ABSOLUTELY SHOULD HAVE.

While this was created specifically to use with kids and teens, it of course still applies to neurodivergent adults, and is beneficial for everyone to know about.

I’ve had a few people comment on my last few comic strips that my stuff is mainly aimed at kids and should include adults. 

I work primarily with kids, and I needed resources to explain this sort of thing to them. So I made them.

Yes, this stuff applies to adults. Yes, the panda illustrations are true for adults as well. No, people don’t grow out of being Autistic and yes, they still need supports and accommodations as adults. Yes, perhaps I’ll make adult versions of these illustrations in the future, but I really couldn’t say when. Each one takes me 10 hours to create.

As always, these illustrations are available to purchase from teachers pay teachers. Search neurowild and you’ll find them all. Or send me a dm if you need a direct link.

Em 😊🌈✌️
AuDHD SLP"

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2,045 likes, 126 comments - neurowild_ on October 11, 2022: "Teach me about Spoon Theory. In jellyfish form.

Note: Spoon Theory was created by Christine Miserandino in 2003 to help explain the fatigue of her chronic health condition, lupus. It has been adopted in more recent years to explain the mental fatigue often experienced by neurodivergent brains.

I DID NOT ORIGINALLY CREDIT SPOON THEORY TO CHRISTINE IN THIS POST, AND I ABSOLUTELY SHOULD HAVE.

While this was created specifically to use with kids and teens, it of course still applies to neurodivergent adults, and is beneficial for everyone to know about.

I’ve had a few people comment on my last few comic strips that my stuff is mainly aimed at kids and should include adults. 

I work primarily with kids, and I needed resources to explain this sort of thing to them. So I made them.

Yes, this stuff applies to adults. Yes, the panda illustrations are true for adults as well. No, people don’t grow out of being Autistic and yes, they still need supports and accommodations as adults. Yes, perhaps I’ll make adult versions of these illustrations in the future, but I really couldn’t say when. Each one takes me 10 hours to create.

As always, these illustrations are available to purchase from teachers pay teachers. Search neurowild and you’ll find them all. Or send me a dm if you need a direct link.

Em 😊🌈✌️
AuDHD SLP". 

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"These Quick Tips include some of the most important things to keep in mind when planning for meaningful inclusion and participation of our community in digital or online meetings. The full version of this guide (inlink) contains detailed suggestions for improving online meeting access for augmentative and alternative communication (AAC) users and others who may need speech-related meeting accommodations."

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Best Practices for Online Meetings with AAC Users

# data[].attributes.attachment_link.description
When planning for meaningful inclusion and participation of our community

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Navigating education & working well with school

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Navigating education & working well with school

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Navigating education and working well with school | Autism Central

The second series of 'Finding the balance' on education from Autism Central with Dr Naomi Fisher and Eliza Fricker. The series of seven webinars is for parents and carers to understand more about navigating education and working well with school.​ Each episode features a conversation on a different topic with entertaining and relatable illustrations and practical tips.

You will need to create an account with Autism Central to access these free videos

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This guide helps autistic adults communicate their specific needs and preferences to therapists for a more personalized therapy experience.

Therapy Self-reflection Guide | Thriving Autistic

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Therapy Self-Reflection Guide V2 (Editable)

# data[].attributes.body
"The Therapy Passport for Autistic Adults is a custom-made resource intended to guide your therapist in shaping their support around your unique needs. To get started, use the companion self-reflection guide to understand and outline your specific needs. After you’ve done this, you can fill out the Therapy Passport and present it to your therapist before starting your therapy journey together."

Therapy Passport | Thriving Autistic

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Downloadable Therapy Passport V2 (Editable)

# data[].attributes.attachment_link.title
Workplace Disclosure Guide v2 (Editable)

# data[].attributes.headline
Why do so many autistic people flap their hands?

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Why do so many autistic people flap their hands?

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"As an alexithymic, I’m not usually aware of my emotions. So I even watch my own hands flapping away to help me understand what emotions I’m experiencing. I am “blind” to my emotions—I have emotions, usually very strong ones, but I am unable to know what I am feeling so I have to play detective and watch my body for clues."

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The saying goes, "if you've met one Autistic person, you've met one Autistic person." That was really hammered home for me today as I watched a short video in which an Autistic man explains why Autistic people flap our hands ... and pretty much nothing he said matched up with my own experience. A few of the things he said even bothered me.

My intention is not to erase what he said, however. His view of why he used to flap his hands is just as valid as my view of why I still flap my hands. There are many ways of being Autistic.

(Since the video was not captioned, I took the time to make a transcript of it for those who can't hear or understand it. That was fortunate as the original video was removed from YouTube.) The video explains,

"It comes down to repetition. When we, as people with Asperger's, are in a really unknown situation or we're in a situation where there's a lot of anxiety [...], there's a lot of stress, the way that we manage that, is because generally it's overwhelming we do repetitive motions, because then we at least know, hey, if I do this I have complete control over it. And I know that whatever I do, I have complete control and it's going to happen the same time every time. Therefore, I get a little bit of comfort from it."

This does not even begin to describe why I flap my hands or make other "Autistic movements." Yes, I flap in stress. I flap in overwhelm. I flap when I get hurt. The video presents hand flapping as if it only occurs as a result of stress or anxiety, however, and that is not at all true for me.

I flap my hands when I am happy. I flap them when I am content. I flap them a lot when I get excited about something. I have as many different ways of flapping and twisting and ruffling and fluttering my hands as I have emotions and emotional combinations that wash over and through me. My hands are like barometers of my emotional climate.

There are plenty of things I do to try to increase the amount of control in my life, but flapping my hands is not really one of those things. I don't flap my hands to have something reliable and constant in my life. I fill that need with other things, like small stuffed animals I carry in my pocket or ritual ways of doing certain things. For example, there is a little ritual to how my boyfriend and I say good night in the evening and that ritual comforts me, gives me a sense of stability and predictability in my life, and helps me to make the transition from visiting with him to being alone again. I do other things like always removing the ice cube trays from the freezer in the same order, always putting the same number of ice cubes in my glass, always walking or bicycling the same route to get places, always brushing my teeth for the same number of minutes every night, and so on.

These things serve my need to have a predictable, orderly world that is under my control as much as possible. The more I am able to feel a sense of control over my life, the calmer and happier I am. I suspect this is true for most or all people, but it is quite extreme in my case. Something small, like not getting my usual seat, or having the water turned off for twenty minutes in my apartment building in the middle of the day with no warning, can make me feel like my world is coming to an end. I am always fighting back the forces of chaos. But I do not wage this war with hand flaps.

The most common reason for me to flap my hands is that I am very happy and excited about something. My boyfriend told me that he loves to see my hands flap because there is a lovely joy that goes along with it that is fresh and appealing, without guile or artifice. If I recall correctly, he used the word "childlike" and meant it in a beautifully loving and respectful sense. Over the month of December, we went through a Jacquie Lawson advent calendar together every morning right after having breakfast together and he got to see lots of hand-flapping on the days when the calendar surprise was a steam locomotive or a peacock spreading his bright tail feathers, or a mansion kitchen staffed entirely by giant teddy bears.

I'd see these things that made me really happy and excited and there would go the hands. By the time I was aware that I was flapping my hands, they'd already been going wild all on their own without my awareness. My hand flapping is so often an expression of sheer, unadulterated joy-pretty much the exact opposite of what is being taught in the video, when Asperger Experts says, "it's basically a giant signal saying, "hey! I'm not comfortable right now. Things are too much pressure or too much, just, overwhelm of sensation to the point that I need to do something to feel better about it."

Yes, I can feel pretty overwhelmed by joy! But the kind of flapping I do when I'm not comfortable and suffering is another kind of hand flap. It's a whole language of flaps and twists and shifts and strokes and claps. My hands speak my emotions so clearly, but only to those who are willing to learn what they are saying. My hand flapping is not a single message of suffering. It is a multi-faceted expression of my complex and beautiful emotional life.

As an alexithymic, I'm not usually aware of my emotions. So I even watch my own hands flapping away to help me understand what emotions I'm experiencing. I am "blind" to my emotions-I have emotions, usually very strong ones, but I am unable to know what I am feeling so I have to play detective and watch my body for clues.

My hands are always telling me what I am feeling. Without my hand flaps, I would not be anywhere near as connected to my inner life. Without my hand flaps, I would struggle so much more every day, just trying to understand what my body and spirit were experiencing. My hands are my teachers and they educate me about my deepest self every day.

While I feel as if my three-dimensional experience of hand flapping is described in a very one-dimensional way in the video, that's not what really bothered me about the message. I was bothered by the way hand flapping was presented as something bad, undesirable, ridiculous looking, and mainly restricted only to small children. The video admitted that hand flapping is necessary, but presented it as something annoying and embarrassing that should be substituted as quickly as possible with something less visible, like repetitive thoughts:

"You shouldn't just try to stop it because then they're just going to find some other way of gaining comfort. [...] All of a sudden, they might gain a tic, like [clicks tongue several times] and then that's just even more annoying."

No.

You shouldn't try to stop hand flapping because it is part of who we are. Would you like it if everyone were trying to make you stop smiling? Or tucking your hair behind your ear? Or putting your sunglasses on top of your head? Or crossing your legs when you sat? That is what people are doing to us when they try to make us stop flapping our hands: they are trying to force us to stop moving in ways that are natural, healthy, and comfortable to us.

(And when I say "we" and "us," I mean those of us who do flap our hands or otherwise naturally move in different ways from the rest of society. Not all Autists move in the same ways and that includes the fact that not all of us rock or flap or spin (although the vast majority of us do) so don't assume someone is not Autistic because you don't see them moving in different ways. Or they speak. Or hold a job. As I always say, there is no one way of being Autistic.)

The Asperger's Experts video presents hand flapping as a necessary evil-something that is annoying but has to be tolerated because we do it to soothe anxiety, and might end up doing something even more annoying if we're forced to stop. In my opinion, hand flapping is a fundamental manifestation of the native nervous system of those who flap. It is how we are built, it is what we do. The focus should not be on whether it "might look ridiculous" or whether it's better to "[transition] into listening to the same song over and over again, [or] say the same thing in [one's] mind over and over again." the focus should be on building a society that understands that we don't all move our bodies the same way and that's okay.

"You know, you don't see many people that are forty doing this [waves hands]." I am fifty and I flap my hands. Many of my friends who flap their hands are older than me. I know people in their twenties, thirties, forties, and fifties who flap their hands and even someone in his seventies who flaps his hands. It's okay to move differently from others. It's okay to have a different neurology and it's okay to be who you are.

There is a much worse risk that comes from trying to suppress hand flapping than developing an "annoying tic."

When I was a child, I felt like there was no place that was safe, no place where it was okay to be who I am, no place where I could just relax and be myself. Everybody was trying to give me the advice of "just relax and be yourself," but when I would actually do that, I would be yelled at, criticized, punished, bullied. I lived in fear and anger because nothing I did, no matter what, was ever right or good enough. At school, I was bullied by the students and even by many of the teachers.

At home, I was blamed for the bullying and told I was bringing it on myself. In a misguided attempt to shape me into someone who would not deserve to be bullied so much, all my mannerisms and stims and quirks were under attack. I felt like I was constantly picked apart for behaviors like walking on tiptoe, clearing my throat, flicking my fingers, spinning around, talking too loudly, grunting instead of talking, and so on. I spent ... wasted ... so much energy and focus on trying to make my body and face and voice do all the proper things. But no matter how hard I tried, I kept always doing something wrong, and getting called out for it.

As a result, I was filled with so much anger toward everyone around me and so much self-loathing. I felt like nothing I did was ever right and I had no place to relax - school was filled with bullies and home was filled with picking apart my stims. I grew to hate everyone and often would lose myself in bitter daydreams with imagery I don't care to re-visit now. My whole life was torment and I was in agony. This is the reason to let Autistic people be, not the fear that they might develop new behaviors that are even more annoying to the people around them.

The Asperger's Expert video's reason for tolerating hand flapping was all about what makes other people feel okay or uncomfortable and had almost nothing to do with what the Autistic person wants and needs. Hand flapping almost had to be defined in that very one-dimensional manner, because if hand flapping is nothing but a comfort for excruciating anxiety, it is easier to decide to tolerate the "annoying" and "ridiculous" behavior, but if hand flapping is something that can be a sign of happiness as well as of more difficult emotions it's harder to justify allowing people to be "annoying" just because they are happy.

But the problem is not with the hand flapping. The problem comes when the decision has been made that hand flapping is annoying or weird, and not natural and adorable (which happens to be how it appears to me. I love to see people hand flapping! It makes me happy to see someone making a happy hand flap).

The makers of the video may be Asperger's Experts, but they are most surely not Maxfield Experts, because I'm not at all like what was portrayed in that video and I have many Autistic friends who are similar to me. Of course some Autistic people must resemble the portrait that was painted by the educational video purporting to explain hand flapping because that is how those two young men experienced their own Autistic movements. I don't want to erase their voice when raising mine. But I also want to make sure their message is not the only one available to people.

So, as I said, the lesson here is that if you've met one Autistic person, you've met one Autistic person. There is not just one way to be Autistic. I'm sure the makers of the hand flapping video were expressing the truth about what being Autistic is like for them. Just be careful to remember that no one (including me!) speaks for all Autists. It is a pretty safe bet that there are also Autists out there who aren't like the description in the video but aren't like me, either.

So when you see someone flapping their hands, don't make assumptions about what it means. There are some meanings that are more likely and some that are less likely, but better than guessing-better even than statistically-backed guessing-is getting to know the individual Autist and learning what hand flapping means for them. Engaging with humans is almost never a one-size-fits-all scenario. We Autists are individuals; it's good to learn general autism data, but "at the end of the day" there is no substitute for learning the language, including the body language, of the special person in your life. Or of yourself, if that's how it's all playing out for you.

But no matter what the flaps mean where you are, I do hope you will take one thing seriously that I said: don't hate on the flaps, don't be afraid of them, don't judge them so harshly. Learn to live with the hand flaps because they are a good and useful thing for Autists, no matter what purpose they serve for each individual Autistic person. And, who knows: if you don't already, there may come a day when you begin to see the beauty in hand flaps. Hand flapping and other Autistic stims are quite exuberant and lovely if you remember that they are a person's heart and spirit made visible in time and space for all to behold.

(Note: A version of this post was published at unstrangemind.com in 2014.)

# data[].attributes.attachment_link.title
Why Do So Many Autistic People Flap Our Hands?

# data[].attributes.attachment_link.description
The problem is not autistic hand flapping, but the decision that hand flapping is annoying or weird, not natural (and adorable).

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Why do so many autistic people flap their hands?

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Why do so many autistic people flap their hands?

# data[].attributes.body
"I flap my hands when I'm happy, content, a lot when excited. I've as many diff. ways of flapping, twisting, ruffling, fluttering my hands as emotions & emotional combinations that wash over/through me. My hands are like barometers of my emotional climate"

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The saying goes, "if you've met one Autistic person, you've met one Autistic person." That was really hammered home for me today as I watched a short video in which an Autistic man explains why Autistic people flap our hands ... and pretty much nothing he said matched up with my own experience. A few of the things he said even bothered me.

My intention is not to erase what he said, however. His view of why he used to flap his hands is just as valid as my view of why I still flap my hands. There are many ways of being Autistic.

(Since the video was not captioned, I took the time to make a transcript of it for those who can't hear or understand it. That was fortunate as the original video was removed from YouTube.) The video explains,

"It comes down to repetition. When we, as people with Asperger's, are in a really unknown situation or we're in a situation where there's a lot of anxiety [...], there's a lot of stress, the way that we manage that, is because generally it's overwhelming we do repetitive motions, because then we at least know, hey, if I do this I have complete control over it. And I know that whatever I do, I have complete control and it's going to happen the same time every time. Therefore, I get a little bit of comfort from it."

This does not even begin to describe why I flap my hands or make other "Autistic movements." Yes, I flap in stress. I flap in overwhelm. I flap when I get hurt. The video presents hand flapping as if it only occurs as a result of stress or anxiety, however, and that is not at all true for me.

I flap my hands when I am happy. I flap them when I am content. I flap them a lot when I get excited about something. I have as many different ways of flapping and twisting and ruffling and fluttering my hands as I have emotions and emotional combinations that wash over and through me. My hands are like barometers of my emotional climate.

There are plenty of things I do to try to increase the amount of control in my life, but flapping my hands is not really one of those things. I don't flap my hands to have something reliable and constant in my life. I fill that need with other things, like small stuffed animals I carry in my pocket or ritual ways of doing certain things. For example, there is a little ritual to how my boyfriend and I say good night in the evening and that ritual comforts me, gives me a sense of stability and predictability in my life, and helps me to make the transition from visiting with him to being alone again. I do other things like always removing the ice cube trays from the freezer in the same order, always putting the same number of ice cubes in my glass, always walking or bicycling the same route to get places, always brushing my teeth for the same number of minutes every night, and so on.

These things serve my need to have a predictable, orderly world that is under my control as much as possible. The more I am able to feel a sense of control over my life, the calmer and happier I am. I suspect this is true for most or all people, but it is quite extreme in my case. Something small, like not getting my usual seat, or having the water turned off for twenty minutes in my apartment building in the middle of the day with no warning, can make me feel like my world is coming to an end. I am always fighting back the forces of chaos. But I do not wage this war with hand flaps.

The most common reason for me to flap my hands is that I am very happy and excited about something. My boyfriend told me that he loves to see my hands flap because there is a lovely joy that goes along with it that is fresh and appealing, without guile or artifice. If I recall correctly, he used the word "childlike" and meant it in a beautifully loving and respectful sense. Over the month of December, we went through a Jacquie Lawson advent calendar together every morning right after having breakfast together and he got to see lots of hand-flapping on the days when the calendar surprise was a steam locomotive or a peacock spreading his bright tail feathers, or a mansion kitchen staffed entirely by giant teddy bears.

I'd see these things that made me really happy and excited and there would go the hands. By the time I was aware that I was flapping my hands, they'd already been going wild all on their own without my awareness. My hand flapping is so often an expression of sheer, unadulterated joy-pretty much the exact opposite of what is being taught in the video, when Asperger Experts says, "it's basically a giant signal saying, "hey! I'm not comfortable right now. Things are too much pressure or too much, just, overwhelm of sensation to the point that I need to do something to feel better about it."

Yes, I can feel pretty overwhelmed by joy! But the kind of flapping I do when I'm not comfortable and suffering is another kind of hand flap. It's a whole language of flaps and twists and shifts and strokes and claps. My hands speak my emotions so clearly, but only to those who are willing to learn what they are saying. My hand flapping is not a single message of suffering. It is a multi-faceted expression of my complex and beautiful emotional life.

As an alexithymic, I'm not usually aware of my emotions. So I even watch my own hands flapping away to help me understand what emotions I'm experiencing. I am "blind" to my emotions-I have emotions, usually very strong ones, but I am unable to know what I am feeling so I have to play detective and watch my body for clues.

My hands are always telling me what I am feeling. Without my hand flaps, I would not be anywhere near as connected to my inner life. Without my hand flaps, I would struggle so much more every day, just trying to understand what my body and spirit were experiencing. My hands are my teachers and they educate me about my deepest self every day.

While I feel as if my three-dimensional experience of hand flapping is described in a very one-dimensional way in the video, that's not what really bothered me about the message. I was bothered by the way hand flapping was presented as something bad, undesirable, ridiculous looking, and mainly restricted only to small children. The video admitted that hand flapping is necessary, but presented it as something annoying and embarrassing that should be substituted as quickly as possible with something less visible, like repetitive thoughts:

"You shouldn't just try to stop it because then they're just going to find some other way of gaining comfort. [...] All of a sudden, they might gain a tic, like [clicks tongue several times] and then that's just even more annoying."

No.

You shouldn't try to stop hand flapping because it is part of who we are. Would you like it if everyone were trying to make you stop smiling? Or tucking your hair behind your ear? Or putting your sunglasses on top of your head? Or crossing your legs when you sat? That is what people are doing to us when they try to make us stop flapping our hands: they are trying to force us to stop moving in ways that are natural, healthy, and comfortable to us.

(And when I say "we" and "us," I mean those of us who do flap our hands or otherwise naturally move in different ways from the rest of society. Not all Autists move in the same ways and that includes the fact that not all of us rock or flap or spin (although the vast majority of us do) so don't assume someone is not Autistic because you don't see them moving in different ways. Or they speak. Or hold a job. As I always say, there is no one way of being Autistic.)

The Asperger's Experts video presents hand flapping as a necessary evil-something that is annoying but has to be tolerated because we do it to soothe anxiety, and might end up doing something even more annoying if we're forced to stop. In my opinion, hand flapping is a fundamental manifestation of the native nervous system of those who flap. It is how we are built, it is what we do. The focus should not be on whether it "might look ridiculous" or whether it's better to "[transition] into listening to the same song over and over again, [or] say the same thing in [one's] mind over and over again." the focus should be on building a society that understands that we don't all move our bodies the same way and that's okay.

"You know, you don't see many people that are forty doing this [waves hands]." I am fifty and I flap my hands. Many of my friends who flap their hands are older than me. I know people in their twenties, thirties, forties, and fifties who flap their hands and even someone in his seventies who flaps his hands. It's okay to move differently from others. It's okay to have a different neurology and it's okay to be who you are.

There is a much worse risk that comes from trying to suppress hand flapping than developing an "annoying tic."

When I was a child, I felt like there was no place that was safe, no place where it was okay to be who I am, no place where I could just relax and be myself. Everybody was trying to give me the advice of "just relax and be yourself," but when I would actually do that, I would be yelled at, criticized, punished, bullied. I lived in fear and anger because nothing I did, no matter what, was ever right or good enough. At school, I was bullied by the students and even by many of the teachers.

At home, I was blamed for the bullying and told I was bringing it on myself. In a misguided attempt to shape me into someone who would not deserve to be bullied so much, all my mannerisms and stims and quirks were under attack. I felt like I was constantly picked apart for behaviors like walking on tiptoe, clearing my throat, flicking my fingers, spinning around, talking too loudly, grunting instead of talking, and so on. I spent ... wasted ... so much energy and focus on trying to make my body and face and voice do all the proper things. But no matter how hard I tried, I kept always doing something wrong, and getting called out for it.

As a result, I was filled with so much anger toward everyone around me and so much self-loathing. I felt like nothing I did was ever right and I had no place to relax - school was filled with bullies and home was filled with picking apart my stims. I grew to hate everyone and often would lose myself in bitter daydreams with imagery I don't care to re-visit now. My whole life was torment and I was in agony. This is the reason to let Autistic people be, not the fear that they might develop new behaviors that are even more annoying to the people around them.

The Asperger's Expert video's reason for tolerating hand flapping was all about what makes other people feel okay or uncomfortable and had almost nothing to do with what the Autistic person wants and needs. Hand flapping almost had to be defined in that very one-dimensional manner, because if hand flapping is nothing but a comfort for excruciating anxiety, it is easier to decide to tolerate the "annoying" and "ridiculous" behavior, but if hand flapping is something that can be a sign of happiness as well as of more difficult emotions it's harder to justify allowing people to be "annoying" just because they are happy.

But the problem is not with the hand flapping. The problem comes when the decision has been made that hand flapping is annoying or weird, and not natural and adorable (which happens to be how it appears to me. I love to see people hand flapping! It makes me happy to see someone making a happy hand flap).

The makers of the video may be Asperger's Experts, but they are most surely not Maxfield Experts, because I'm not at all like what was portrayed in that video and I have many Autistic friends who are similar to me. Of course some Autistic people must resemble the portrait that was painted by the educational video purporting to explain hand flapping because that is how those two young men experienced their own Autistic movements. I don't want to erase their voice when raising mine. But I also want to make sure their message is not the only one available to people.

So, as I said, the lesson here is that if you've met one Autistic person, you've met one Autistic person. There is not just one way to be Autistic. I'm sure the makers of the hand flapping video were expressing the truth about what being Autistic is like for them. Just be careful to remember that no one (including me!) speaks for all Autists. It is a pretty safe bet that there are also Autists out there who aren't like the description in the video but aren't like me, either.

So when you see someone flapping their hands, don't make assumptions about what it means. There are some meanings that are more likely and some that are less likely, but better than guessing-better even than statistically-backed guessing-is getting to know the individual Autist and learning what hand flapping means for them. Engaging with humans is almost never a one-size-fits-all scenario. We Autists are individuals; it's good to learn general autism data, but "at the end of the day" there is no substitute for learning the language, including the body language, of the special person in your life. Or of yourself, if that's how it's all playing out for you.

But no matter what the flaps mean where you are, I do hope you will take one thing seriously that I said: don't hate on the flaps, don't be afraid of them, don't judge them so harshly. Learn to live with the hand flaps because they are a good and useful thing for Autists, no matter what purpose they serve for each individual Autistic person. And, who knows: if you don't already, there may come a day when you begin to see the beauty in hand flaps. Hand flapping and other Autistic stims are quite exuberant and lovely if you remember that they are a person's heart and spirit made visible in time and space for all to behold.

(Note: A version of this post was published at unstrangemind.com in 2014.)

# data[].attributes.attachment_link.title
Why Do So Many Autistic People Flap Our Hands?

# data[].attributes.attachment_link.description
The problem is not autistic hand flapping, but the decision that hand flapping is annoying or weird, not natural (and adorable).

# data[].attributes.attachment_link.title
On Autism, Getting Dressed, and Toileting

# data[].attributes.attachment_link.description
There are a lot of parents who are anxious about the upcoming school year because their autistic children may not be dressing or toileting without assistance. This article explains why many autistic children and adults may experience incontinence.

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5 things that can help Autistic students settle in at university

# data[].attributes.subject
5 things that can help Autistic students settle in at university

# data[].attributes.body
Five things that can help autistic students settle into university (theconversation.com)

# data[].attributes.attachment_link.title
Five things that can help autistic students settle into university

# data[].attributes.attachment_link.description
University is often unpredictable but there are things autistic students can do to make the experience more positive.

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A starting point for neuro-inclusivity by Caroline Keep 

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A starting point for neuro-inclusivity by Caroline Keep 

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Excellent blog with a treasure trove of signposting and resources

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A starting point for neuroinclusivity: Essential reading and thoughts from some of the leading neurodivergent minds. — Global Equality Collective

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Caroline Keep is a founding GEC expert. She speaks for us at events and helps QA our content for the GEC Platform. Here she discusses and educates us, using her lived experience as an award-winning teacher, PhD researcher and diagnosed “autistic ADHDer”.

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Lived autistic girls' insights on the impact of school environments on wellbeing

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Lived autistic girls' insights on the impact of school environments on wellbeing

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https://youtu.be/J4xFMUkuClA?si=5LG3PIHsz85RVtlP

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GRRAND Webinar Series: Autistic young people and persistent school absenteeism, Dr Ruth Moyse

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Spaced Out & Smiling (spacedoutandsmiling.com)

More than anything… there’s a sort of magic which comes from being myself and letting my stims and sensoryness flow into something fun.

Pushing back on societal assumptions about what we’re allowed to ‘enjoy’ is important if we want to preserve the joyful parts of our lives.

Like with many things in my life, thriving comes from embracing what works and preserving the joyful moments. I’d recommend everyone to give sensory toys a go… ya never know what you might be missing out on :)

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Gosh I'm writing a blog post early today. Welcome to ~5am... I'm up super early today as I'm resetting my sleep schedule after been unwell for a few weeks. Two weeks of broken tummy has been pretty rough, but it's improving slowly!

Anyway! I've recently be tweeting about the sensory toys in my bed and it felt like it needed a proper post... so here's a post all about them.

I'm going to give a bit of background, then cover off, what toy I use, why I choose them, why they are so magic & why I think everyone should have a few!

What is a sensory toy?

So erm. What do I mean by sensory toy? And erm... how's that different to say Lion or other plushies in my life?

In a nutshell... sensory toys are objects but plushies are friends.

All the plushies in my Life (like Lion!) have their own little roles and jobs. They all have personalities and it's important they are comfy and happy. For example, none of my plushies live in a wardrobe or a draw. They all have a specific spots in my flat. Some even have mini bedrooms in bookcases.

While plushie are sensory as heck (so many Lion snuggles!) they are not themselves sensory toys!

Instead sensory toys are mostly objects which are designed with sensory play in mind. For example, I have hanging toys, grasping toys, chewy toys, toys which have lots of different textures and toys which make a noise.

Unlike plushies, sensory toys don't have personalities and are 'inert'. They can live in a box and come out when I want to play with them. I don't have to worry about hurting or upsetting a sensory toy.

Over the years I've accumulated a big box of sensory toys. Mostly a mix of baby toys, charity shop finds and presents from friends and family.

I'm really glad they are part of my life. I may one day review them all individually (it might make for a fun YouTube channel!) but for today I'm just going to post about the sensory toys which live in my bed and why

My bed is epic.

My bed is the single most important place in my life. It's where I feel safest. Depending on my mobility, wobblyness and soreness, I may be in my bed for 12-15 hours per day

For folks who don't know, I have a pretty epic bed It was custom made for me by the lovely folks at Tough Furniture and it's got big sides. It keeps me safe if I have a seizure and the enclosed design helps my sleep no end. I've also designed and 3D printed mounts for things like my phone, drinks, meds & glasses.

It's not big, but wow there's lots of neat tools and tricks built into my bed.

From a sensory perspective, the main things are the plushies, the lights and the toys.

I'll write plushies & lights properly another day... but very briefly there's always at least one large plushie in the bed & there's heaps of clever lighting.

Plushie wise, it's normally Lion who manages the bed but he's trained up other plushies for the role too. They own and run the bed.... It's part of why the bed feels safe. It's a managed space :)

Lighting wise, I have a Hooty owl star projector and a lava lamp projector.

I love the moving light from the projectors as it makes the room feel alive and interesting. Theres also a magnetic smart light switch which manages all the lights and also controls the fan.

Wow. Lots of background on my bed. Now for the main part.... All about the sensory toys!

The Sensory Toys in my bed.

I don't have a specific system but generally speaking I have 3 or so sensory toys in my bed most of the time.

Normally... I have a a dangly toy for grasping, a bouncy toys for moving and a big flat multi texture toys for exploring.

The dangly toy normally lives in the corner of the bed. it's something I can grasp at with my hands. For whatever reason I love being able to cuddle around a plushie, then have something to hold or pull with my hands. It really helps me to relax and rest.

The one I have at the moment is a baby style one I was given by a friend. The friend saw it in a charity shop window and thought "oh, that's very Jamie". I asked them why, and they couldn't explain beyond the fact they could imagine me enjoying it.

They were dead right. It's got a bunch of dangly things hanging off a twisty ropey base. Here's a photo of it, hanging in the corner where it lives. The springyness works really well for me, it can be pulled on and the spring back is delightful.

The second sensory toy in my bed is normally something for movement stins and kenetic sensory play.

Right now... it's a little COVID-19 a friend gave me during the pandemic. My friend was worried about giving me COVID, so he brought me a soft toy COVID so he could give me COVID in a positive ways.

As a soft felt ball who likes being thrown around... it's perfect for throwing, catching, rolling, spinning and bouncing off things. Much like how a virus isn't alive (just an angry string of DNA!), my COVID soft toy isn't a full plushie.

I love the humour and he's perfect for gentle bouncy fun as my hands wake up.

The third sensory toy I normally have in my bed is some form of flat wide sensory toy with lots of textures to explore with my fingers.

I've got a few, some are like mini blankets with different patches, others are Lion shaped or dinosaur themed.

I've also got a few different cloth books... as long as it's flat and multiple materials it does the job.

The current flat toy is a Whinnie the Pooh soft book from the Disney 100 experience gift shop.

My friends brought it for me after i absent mindely picked it up and played with it while they were looking at clothes.

It had a been a long day and exceptionally busy in the exhibit... it was a bright and hectic place. I'd been mega wobbly that day so we'd used the buggy and I was sensory seeking by chewing on empty water bottles. Etc.

A little sensory book worked much better... one of my friends paid for it on the way out... after I had a moment of hesitation putting it back. I don't normally do toys in the buggy (just a plushie) but for that environment, that day, I needed something to channel the sensory seeking into and it was perfect.

Like most big flat sensory toys, it works great with my hands. If I'm really tired or sensory seeking I'll quite often squeeze each section. I'll explore the textures one after the other, in a specific order and repeat the order.

I don't do it on purpose, my body just likes doing it in a stimmy way. Unlike the dangling toys (which tend to stay fixed to the corner or a side) the flat toys can move wherever I want them.

The specific toys swap out from time to time, but generally speaking there's always one of each type within my bed.

Why?

So... that's a nice breakdown of what sensory toys live in my bed. By why the heck do I have them?

I think broadly speaking there's three reasons. Sensory stuff, waking my body up and connectedness.

The sensory side is pretty simple. My body seeks out sensory input. It will find it whatever I'm doing, at least with specific toys I'm not chewing my hands or grinding my teeth etc. Redirecting my sensory seeking to specific toys has made it easier to manage and more joyful. Win win.

Next up... waking up my body. I've always had a hard time getting my hands working in the morning. It got worse after my injury, especially if I get too cold!

A bit of time playing with sensory toys really helps wake my hands up. I sorta naturally end up reaching for them in the morning... I've done it for about as long as I can remember.

There also a side benefit with my ADHD meds. Having lots of movement early in my meds window helps to get the day started. Once my hands have, woken up I can also use my phone to clear my email etc.

Finally... there a sort of joyful connectedness as each toy has a back story. Most of them come from friends and fun adventures. Whe I'm very wobbly it's easy to get quite isolated from folks, so anything that can help me feel connected is useful.

That's just the practical stuff...

Final thoughts

More than anything... there's a sort of magic which comes from being myself and letting my stims and sensoryness flow into something fun.

Pushing back on societal assumptions about what we're allowed to 'enjoy' is important if we want to preserve the joyful parts of our lives.

My best days start with a smooth sensory filled morning and we should celebrate the toys, rather than worry about which section of the shop they come from.

Like with many things in my life, thriving comes from embracing what works and preserving the joyful moments. I'd recommend everyone to give sensory toys a go... ya never know what you might be missing out on :)

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Gosh I'm writing a blog post early today. Welcome to ~5am... I'm up super early today as I'm resetting my sleep schedule after been unwell for a few weeks. Two weeks of broken tummy has been pretty rough, but it's improving slowly! Anyway!

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Rejection Sensitivity Dysphoria (RSD) - Autism Understood

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Rejection Sensitivity Dysphoria (RSD) - Autism Understood

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Rejection Sensitivity Dysphoria (RSD) can cause low self-esteem and get in the way of friendships. How to cope when it kicks in.

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And why we need to...

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The tight connection between thinking and moving is a legacy of our species's evolutionary history.
The Extended Mind - Annie Murphy Paul

We inherited a "mind on the hoof," in the phrase of philosopher Andy Clark-but in today's classrooms and offices, the vigorous clatter of hoofs has come to an eerie halt.

What this attitude overlooks is that the capacity to regulate our attention and our behavior is a limited resource, and some of it is used up by suppressing the very natural urge to move.
The Extended Mind - Annie Murphy Paul

The suppression of our need to fidget, stim, and move results in the exclusion of neurodivergent people from school. We have turned classrooms into a hell for neurodivergence. Suppressing fidgeting contributes to that.

Within the constant overwhelm is a pilot flame of anxiety, burning always. Anxiety and overwhelm, the torrid pas de deux that belies the silent, almost still compliance. Their dance is steam and froth, resonance foam on the sensory ocean I swim beneath the almost stillness - still but for the tugging of my hair. Don't disallow me that, but some of them will. Fidgeting is a threat.
CHAMPS and the Compliance Classroom - Stimpunks Foundation

Offer bodymind affirmations and provide outlets for stimming, pacing, fidgeting, and retreating. At Stimpunks, we use this bodymind affirmation before all meetings/gatherings:

"We should all move in our space in whatever way is most comfortable for our bodyminds. Please use this space as you need or prefer. Sit in chairs or on the floor, pace, lie on the floor, rock, flap, spin, move around, come in and out of the room. This is an invitation for you to consider what your bodymind needs to be as comfortable as possible in this moment. This is an invitation to remind yourself to remember and to affirm that your bodymind has needs and that those needs deserve to be met, that your bodymind is valuable and worthy, that you deserve to be here, to belong."
Lydia X. Z. Brown

We like to share the video " Walk In My Shoes " for a taste of what life is like for a hypersensory autistic person in school.

CYP = Children and Young People

Fidgeting and doodling can help with sensory overwhelm. It can help autistic CYPs filter and find a focus. This supports thinking and learning.
Lisa Chapman @CommonSenseSLT

Fidgeting and doodling help if you are feeling overwhelmed by providing rhythmical proprioceptive, tactile and visual input. They are forms of stimming. Stimming can be joyful as well as for regulation.
Lisa Chapman @CommonSenseSLT

Stimming can also provide controllable and rhythmical sound input. Stimming is a great way to regulate & can be a great tool for teachers to recognise & use to support #ActuallyAutistic CYPs
Lisa Chapman @CommonSenseSLT

The physical & emotional effects of having to work hard to filter, keep focussed, use additional sensory supportive strategies all day long, just to keep up with everyone else are ENORMOUS.
Lisa Chapman @CommonSenseSLT

School is child prison. It's forcing kids to spend their childhood - a happy time! a time of natural curiosity and exploration and wonder - sitting in un-air-conditioned blocky buildings, cramped into identical desks, listening to someone drone on about the difference between alliteration and assonance, desperate to even be able to fidget but knowing that if they do their teacher will yell at them, and maybe they'll get a detention that extends their sentence even longer without parole.
Book Review: The Cult Of Smart - by Scott Alexander

We're Tired of "Quiet Hands!"

Autistic people (and others with developmental disabilities) have been fighting a war for decades. It's a war against being forcibly, often brutally, conditioned to behave more like neurotypicals, no matter the cost to our own comfort, safety, and sanity. And those of us who need to stim in order to concentrate (usually by performing small, repetitive behaviors like, oh I don't know, spinning something) have endured decades of "Quiet Hands" protocols, of being sent to the principal's office for fidgeting, of being told "put that down/stop that and pay attention!," when we are in fact doing the very thing that allows us to pay attention instead of being horribly distracted by a million other discomforts such as buzzing lights and scratchy clothing. We've had our hands slapped and our comfort objects confiscated. We've been made to sit on our hands. We've been tied down. Yes, disabled children get restrained-physically restrained-in classrooms and therapy sessions and many other settings, for doing something that has now become a massive fad.
What the Fidget Spinners Fad Reveals About Disability Discrimination - THINKING PERSON'S GUIDE TO AUTISM

In a classroom of language-impaired kids, the most common phrase is a metaphor.

"Quiet hands!"

A student pushes at a piece of paper, flaps their hands, stacks their fingers against their palm, pokes at a pencil, rubs their palms through their hair. It's silent, until:

"Quiet hands!"

I've yet to meet a student who didn't instinctively know to pull back and put their hands in their lap at this order. Thanks to applied behavioral analysis, each student learned this phrase in preschool at the latest, hands slapped down and held to a table or at their sides for a count of three until they learned to restrain themselves at the words.

The literal meaning of the words is irrelevant when you're being abused.
Quiet Hands | Just Stimming...
We're Tired of "Cop Shit"

The contemporary classroom is a bastion of neuronormativity. "Cop Shit" is abundant and on trend. The fight for the right to learn differently is a continuous confrontation with authoritarians with bad framing.

So why do we have cop shit in our classrooms?
One provisional answer is that the people who sell cop shit are very good at selling cop shit, whether that cop shit takes the form of a learning management system or a new pedagogical technique. Like any product, cop shit claims to solve a problem. We might express that problem like this: the work of managing a classroom, at all its levels, is increasingly complex and fraught, full of poorly defined standards, distractions to our students' attentions, and new opportunities for grift. Cop shit, so cop shit argues, solves these problems by bringing order to the classroom. Cop shit defines parameters. Cop shit ensures compliance. Cop shit gives students and teachers alike instant feedback in the form of legible metrics.

In short, cop shit operates according the the logic of datafication. Indeed, the rise of ed tech has seen the multiplication and proliferation of unprecedented forms of cop shit. See, for instance, this illuminating post on the "The 100 Worst Ed-Tech Debacles of the Decade," published at the end of last year. It's a murderer's row of cop shit.

Cop shit is seductive. It makes metrics transparent. It allows for the clear progress toward learning objectives. ("Badges" are cop shit, by the way.) It also subsumes education within a market logic. "Here," cop shit says, "you will learn how to do this thing. We will know you learned it by the acquisition of this gold star. But in order for me to award you this gold star, I must parse you, sense you, track you, collect you, and-" here's the key, " I will presume that you will attempt to flout me at every turn. We are both scamming each other, you and I, and I intend to win." When a classroom becomes adversarial, of course, as cop shit presumes, then there must be a clear winner and loser. The student's education then becomes not a victory for their own self-improvement or -enrichment, but rather that the teacher conquered the student's presumed inherent laziness, shiftiness, etc. to instill some kernel of a lesson.
Against Cop Shit | Jeffrey Moro

What Makes a Good Teacher?

Benton

1

High levels of auditory stimulation and physical movement

Fidget tools; being allowed to stand up and spin; learning through discussion

Silent working; exam conditions; being told off for fidgeting

Daz

1

High levels of somatosensory stimulation
Chewing gum to concentrate; biting pens; being allowed to move in seat
Having chewing gum confiscated and then being told off for chewing on shirt collar; being told to sit still

Jeffrey

1

High levels of personal space and
regulation of
temperature

Being allowed to sit near a window for ventilation; being allowed to remove blazer/jumper

Seating plans where placement was next to a student that 'spread out' their belongings

Lewis

1

Low levels of auditory
stimulation; high levels of personal space

Individual working; quiet lessons; being allowed to take 'time out' in the classroom

Enforced group work; noisy, moving classes (e.g. PE, DT) without a quiet space

Yazi

2

Low levels of auditory stimulation; high levels of physical movement
Being allowed to fidget and doodle while listening to instructions Being told off for reading a book rather than talking to peers

Hanzo

2

High levels of both auditory
stimulation and
physical movement

Energetic and noisy tasks; large group work; being allowed to use fidget toy

Silent working; being told off for fidgeting; working with unfamiliar students

Bob

2

Low levels of both
auditory and visual
stimulation

Whole class instruction; being 'leader' in a group; pair work

Working with unfamiliar students

Jack

2

High levels of both
auditory and visual stimulation

Colour-coding to keep subjects organised; using interests for projects (e.g. creative writing essay)

Being told off for inappropriate affect; instructions not given face to face (e.g. shouted across the room)

When our community advocates for neurodiversity-affirming practices instead of more cop shit, we meet these obstacles.

10 Obstacles to Neurodiversity Affirming Practice

(links are to our glossary, where you can learn much more)

politics of resentment = manipulations of status anxiety; organization of interest groups based on perceived deprivation or the threat of deprivation

sameness-based fairness = notion of fairness where everyone gets the same thing rather than each getting what they need

fundamental attribution error = to underestimate the impact of situational factors and to overestimate the role of dispositional factors in controlling behaviour

conquering gaze from nowhere = the interpretation of objectivity as neutral and not allowing for participation or stances; an uninvolved, uninvested approach that claims objectivity to "represent while escaping representation"

scientism = the belief that science is the only route to useful knowledge

epistemic injustice = where our status as knowers, interpreters, and providers of information, is unduly diminished or stifled in a way that undermines the agent's agency and dignity

behaviorism = a dehumanizing mechanism of learning that reduces human beings to simple inputs and outputs

ableism = a system of assigning value to people's bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness

deficit ideology = a worldview that explains and justifies outcome inequalities by pointing to supposed deficiencies within disenfranchised individuals and communities

better get used to it = preparing people for oppression by oppressing them

"Ed bro rationalists" confront us with studies framed in scientism and epistemic injustice that are abused to justify abusing us and further suppressing us.

You can't reduce the complexity of learning and our lived experience to studies that measure the surface, badly. We're raising whole children, not frankenstein children.

Don't be an ed bro.

Don't be a cop.

Be a teacher.

Anyone trying to police other people's self-identities is just another tedious cop, and a cop is pretty much the most un-queer, non-liberatory thing a person can be.
Walker, Nick. Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities (pp. 166-167). Autonomous Press.

Activity-Permissive Settings

ACTIVITY-PERMISSIVE SETTINGS are still the exception in schools and workplaces, but we ought to make them the rule; we might even dispense with that apologetic-sounding name, since low-intensity physical activity clearly belongs in the places where we do our thinking. Meanwhile, medium- and high-intensity activity each exerts its own distinct effect on cognition-as the psychologist Daniel Kahneman has discovered for himself.
The Extended Mind - Annie Murphy Paul

We're tired of "Quiet Hands!"

We're tired of "Cop Shit".

We want Activity-Permissive Settings.

Let us fidget and stim.

"Sitting quietly," the researchers conclude, "is not necessarily the best condition for learning in school."

The continual small movements we make when standing as opposed to sitting-shifting our weight from one leg to another, allowing our arms to move more freely-constitute what researchers call "low-intensity" activity. As slight as these movements appear, they have a marked effect on our physiology:

It's not only that such activity-permissive setups relieve us of the duty to monitor and control our inclination to move; they also allow us to fine-tune our level of physiological arousal. Such variable stimulation may be especially important for young people with attention deficit disorders. The brains of kids with ADHD appear to be chronically under-aroused; in order to muster the mental resources needed to tackle a difficult assignment, they may tap their fingers, jiggle their legs, or bounce in their seats. They move as a means of increasing their arousal-not unlike the way adults down a cup of coffee in order feel more alert.

She found that more intense physical movement was associated with better cognitive performance on the task. The more the children moved, in other words, the more effectively they were able to think. Parents and teachers often believe they have to get kids to stop moving around before they can focus and get down to work, Schweitzer notes; a more constructive approach would be to allow kids to move around so that they can focus.

Even among those without an ADHD diagnosis, the amount of stimulation required to maintain optimal alertness varies from person to person. Indeed, it may differ for the same individual over the course of a day. We have at our disposal a flexible and sensitive mechanism for making the necessary adjustments: fidgeting. At times we may use small rhythmic movements to calm our anxiety and allow us to focus; at other moments, we may drum our fingers or tap our feet to stave off drowsiness, or toy with an object like a pen or a paperclip as we ponder a difficult concept. All of these activities, and many others, were submitted to researcher Katherine Isbister after she put out a call on social media for descriptions of people's favorite "fidget objects" and how they used them.

Her research and that of others suggests that fidgeting can extend our minds in several ways beyond simply modulating our arousal. The playful nature of these movements may induce in us a mildly positive mood state, of the kind that has been linked to more flexible and creative thinking. Alternatively, their mindless and repetitive character may occupy just enough mental bandwidth to keep our minds from wandering from the job at hand. One study found that people who were directed to doodle while carrying out a boring listening task remembered 29 percent more information than people who did not doodle, likely because the latter group had let their attention slip away entirely.

Perhaps most intriguing is Isbister's theory that fidgeting can supply us with a range of sensory experiences entirely missing from our arid encounters with screen and keyboard. "Today's digital devices tend to be smooth, hard, and sleek," she writes, while the fidget objects she crowdsourced exhibit "a wide range of textures, from the smoothness of a stone to the roughness of a walnut shell to the tackiness of cellophane tape." The words contributors used to describe their favored objects were vivid: such articles were "crinkly," "squishy," "clicky-clackety"; with them they could "scrunch," "squeeze," "twirl," "roll," and "rub." It's as if we use fidgeting to remind ourselves that we are more than just a brain-that we have a body, too, replete with rich capacities for feeling and acting. Thinking while moving brings the full range of our faculties into play.
The Extended Mind - Annie Murphy Paul

"I don't think fidget spinners should be banned. Teachers are often out of their depth with children with disabilities - the logic often is 'I don't understand it so get rid of it'.
Dr Sue Fletcher-Watson, Fidget spinners 'soothing' for autistic children and blanket ban in Scotland would 'miss the point', claims expert | The Scottish Sun

Regulatory and Adaptive Roles of Fidgeting

while stimming I am able to unravel the everyday ordinary barrage of sensory and social information that becomes overwhelming.
The Predictability, Pattern and Routine of Stimming | Judy Endow

Most of us stim because it calms us and helps alleviate our high levels of anxiety.
Siena Castellon

I can't picture things in my head sitting still. I like to walk around and think. Young Autistic Stimpunk

Sometimes I need a mind/body break. I need to be alone, I need to be in my head, and I need to stim. I stim by flapping my arms and clapping my hands while pacing. Stimming is a necessary part of sensory regulation. Stimming helps keep me below meltdown threshold.
We're Autistic. Here's what We'd like you to know.

Restricted and repetitive behaviours and interests (RRBIs) have regulatory and adaptive roles.

RRBIs help regulate sensory experiences.

RRBIs can be strategies to cope with anxiety and introduce control to the environment.

RRBIs help autistics to make sense of their worlds.

Identifying the functions of restricted and repetitive behaviours and interests in Autism: A scoping review. - ScienceDirect

"What these fidget toys do is help reduce anxiety and manage sensory confusion - they give you something to focus on and allow you to block out other things that are harder to deal with.

"For autistic kids the classroom is already distracting - it's colourful, disorganised, full off visual concepts, everyone is talking and they're surrounded by smells from the teacher's perfume to kids' shampoo.

"It can be very overwhelming for autistic child - so something that gives a single focus is not a distraction, it's the opposite, and enables them to carry on with their work.

"Lots of people will create their own sensory stimulation by flicking their hands or fingers - this is something we've known autistic children do to cope.

"There is the issue of distractability with ADHD, so the principle of providing a soothing focus could be beneficial.

"I think comes down to whether people willing to work with someone with ADHD or work against them."

Dr Sue Fletcher-Watson, Fidget spinners 'soothing' for autistic children and blanket ban in Scotland would 'miss the point', claims expert | The Scottish Sun

As the autistic experience of the world differs from that of non-autistic people, so too does autistic behaviour. Understanding what is usual for an autistic patient facilitates care. Repetitive behaviour, which is common to autistic people, is termed 'stimming'. It varies in manifestation and function, but may include hand flapping, whole body movements or the subtle use of fidget tools. In stressful situations, anxiety may be alleviated by stimming, so we advise encouraging the use of whatever tools a patient finds beneficial.
Autism and anaesthesia: a simple framework for everyday practice - ScienceDirect

Accept different expressions of sensory and communication preferences in employees as different but not wrong. Some people may prefer not to make direct eye contact or may use unconventional body language. Feeling free to stim (e.g., fidgeting, pacing, or chewing a pencil), or comfortable to show tics (including eye blinking, throat clearing) can help people to feel well regulated and to manage stress and anxiety.
Beyond Accommodations: Supporting Autistic Health Professionals: Practice based guide for employers and employees

Predictive processing shows how seemingly pointless actions like fidgeting in fact can serve an uncertainty-reducing function.

To resolve mounting uncertainty about the world, agents perform simple and precise actions, confirming their self-model.

This proposal is extended to autistic stimming, which can be understood as a form of fidgeting.

Fidgeting as self-evidencing: A predictive processing account of non-goal-directed action - ScienceDirect

Autistic adults highlighted the importance of stimming as an adaptive mechanism that helps them to soothe or communicate intense emotions or thoughts and thus objected to treatment that aims to eliminate the behaviour.
Furthermore, more recent theories have suggested that stimming may provide familiar and reliable self-generated feedback in response to difficulties with unpredictable, overwhelming and novel circumstances (e.g. Lawson, Rees, & Friston, 2014; Pellicano & Burr, 2012). As such, stimming may provide not only relief from excessive sensory stimulation, but also emotional excitation such as anxiety (Leekam, Prior, & Uljarevic, 2011). Consistent with these suggestions, autistic adults report that stimming provides a soothing rhythm that helps them cope with distorted or overstimulating perception and resultant distress (Davidson, 2010) and can help manage uncertainty and anxiety (e.g. Joyce, Honey, Leekam, Barrett, & Rodgers, 2017).

Reflecting the aims of popular interventions, language surrounding the topic of stimming is often pejorative (Jaswal & Ahktar, 2018). Researchers sometimes assume that stimming falls within voluntary control and has asocial or antisocial motivations (Jaswal & Ahktar, 2018; Lilley, in press). For example, a prominent review of repetitive behaviours in autistic people attributed the onset of stimming to a 'self-imposed restricted environment' (Leekam et al., 2011, p. 577). Stimming has become so associated with autism that some scientists and clinicians use the term 'stims' interchangeably with 'autistic behaviour' (Donnellan, Hill, & Leary, 2013). Furthermore, therapies continue to treat stimming despite lacking strong evidence of efficacy or ethics (Jaswal & Akhtar, 2018; Lilley, in press). While researchers increasingly acknowledge limitations in the understanding of, and interventions for, stimming (e.g. Harrop, 2015; Patterson, Smith, & Jelen, 2010), treatments may remain popular, in part because many parents regard it as noticeable and stigmatising (Kinnear, Link, Ballan, & Fischbach, 2016).

Autistic people have become increasingly mobilised and vocal in defence of stimming. Autism rights or neurodiversity activists believe that stims may serve as coping mechanisms, thus opposing attempts to eliminate non-injurious forms of stimming (e.g. Orsini & Smith, 2010). They decry practices such as 'quiet hands' (which teaches the suppression of hand flapping), instead using 'loud hands' as a metaphor both for using such non-verbal behaviour to communicate and for cultural resistance more broadly (Bascom, 2012). In addition, autistic scholar-activists denounce attempts to reduce their bodily autonomy (Nolan & McBride, 2015; Richter, 2017) and declarations of their stimming as unacceptable or as necessarily involuntary (Yergeau, 2016).
'People should be allowed to do what they like': Autistic adults' views and experiences of stimming - Steven K Kapp, Robyn Steward, Laura Crane, Daisy Elliott, Chris Elphick, Elizabeth Pellicano, Ginny Russell, 2019

Acceptance and Sensory-Based Approaches

"We need to identify childrens' strengths in school and identify the tools to help them - fidget toys are part of that toolkit."
Dr Sue Fletcher-Watson, Fidget spinners 'soothing' for autistic children and blanket ban in Scotland would 'miss the point', claims expert | The Scottish Sun

Research exploring general mental health has highlighted empirical evidence supporting the benefits of sensory-based approaches in the general population, where the physical environment is tailored to the sensory processing characteristics of an individual [397-401]. Sensory-based approaches can include strategies such as adjusting the room's lighting and/or colours, providing access to weighted blankets, fidget tools, rocking chairs, and/or noise- cancelling headsets to reduce sensory stimulation. Sensory-based mental health approaches have been shown to create a sense of safety and control, increase self-regulation, reduce distress and anxiety, improve self-perception, and help with stabilising (or 'grounding') acute arousal [399, 401]. There is also emerging evidence suggesting that sensory-based approaches in inpatient mental health facilities may contribute to improvements in autistic individuals' wellbeing and self-regulation [372, 402-403], giving further weight to the argument in support of ED services attending to the unique sensory needs of NDI.

Neurodivergence, Intersectionality, and Eating Disorders: A Lived Experience-Led Narrative Review

Encourage the use of comfort items and sensory aids such as noise-cancelling headphones, including right up to induction of anaesthesiawhere feasible. It is helpful to have a supply of inexpensive sensory aids available; these can include disposable ear plugs, sunglasses and a selection of fidget tools or tactile sensory aids.
Autism and anaesthesia: a simple framework for everyday practice - ScienceDirect

An autistic partner told us, "Having a visible box of fidget toys is something I find helpful, it's a cue that this person/environment is safe to be myself".
Beyond Accommodations: Supporting Autistic Health Professionals: Practice based guide for employers and employees

And the fact is, it's easy. I've watched teachers create classrooms where every learner can get fully comfortable. They choose where, how, or if to sit. They lie on the floor and sit on the window sills, dangling their feet. They sit on couches. They have phones and often earbuds or headphones. The lighting is provided by thrift store task lighting. There are views out the windows and at least one blank wall that doesn't assault learners' vision. They're not painted white (the medical field learned in the 1970s that white spaces increased pain perception for most patients). Learners can get up and walk out to a water fountain, to the toilet, just to walk, without anyone's permission. They can eat, drink, fidget, and change positions. They can find something very close to privacy. In other words, everyone in the room can be a real human.
The Path to Equity Begins with Neuroqueer-Sensitive Learning Spaces - Stimpunks Foundation

Make Peace with Fidgeting: Think of It as Brain Development, Which It Is.

Ewan McIntosh echoes the Third Teacher in saying that teachers should 'make peace with fidgeting' , and realise that growing bodies often process information while moving.
Re-imagining Learning Spaces to inspire contemporary learning - Part One: Models for Change - Linking Learning

Building a place to play and release energy, while providing tactile surfaces and activities; the need to fidget is pacified.

Make Peace With Fidgeting: Think of It as Brain Development, Which It Is., Make Peace With Fidgeting | Learning Ecologies Design Studio

Fidgeting, Monotropism, and Flow

Monotropic learners may find it more challenging to focus on a subject that is not intrinsically motivating for them. Fidget tools, doodling, and moving can all help to maintain a flow state, which may help some children cope better and be more regulated. It could improve concentration and learning outcomes and make learning a more enjoyable, less stressful experience. Monotropism is fluid; what works for one person may not work for another, and needs may vary from moment to moment depending on many social, physical, and sensory factors.
Embracing Autistic Children's Monotropic Flow States

The Calm Joy of Engaging with Preferred Items

According to most autistic teenagers ( N = 38), engagement with highly preferred items and activities helps them reach a state of calm happiness that cannot be compared with any other activity. This was often related to reaching a certain level of stimulation with activities that are not too easy or too hard, handling objects of great interest ' independently, without interruptions (...) and developing a thinking routine around the ' details of the objects and its history. '

They are all soft [the toy's collection] and bring nice memories, some are presents from people I love (...) some are fidget toys to keep my hands busy and some (...) I have them all in a basket and go for them (...) [They] help me unwind my mind as I stare the ceiling trying to sleep.

Frontiers | A Good Night's Sleep: Learning About Sleep From Autistic Adolescents' Personal Accounts

Autistic Movement

In conclusion, body movements have both stigmatised and non-stigmatised appearances for autistic adults, but these cannot be distinguished by the function of the movement. Expressive, regulating and repetitive movements can be a well-being resource for autistic people. Implications for practice are discussed.
The meaning of autistic movements - Stephanie Petty, Amy Ellis, 2024

Conflicting Needs

Conflicts between the access needs of different individuals should be negotiated in class as part of the learning process.
Walker, Nick. Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities (p. 152). Autonomous Press.

Freedom of Embodiment

...freedom of embodiment-that is, the freedom to indulge, adopt, and/or experiment with any styles or quirks of movement and embodiment, whether they come naturally to one or whether one chooses them-is an essential element of cognitive liberty, and thus an essential area of focus for the Neurodiversity Movement. The freedom to be autistic necessarily includes the freedom to give bodily expression to one's neurodivergence.
Walker, Nick. Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities (pp. 142-143). Autonomous Press.

Further Reading

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The tight connection between thinking and moving is a legacy of our species's evolutionary history.

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The tight connection between thinking and moving is a legacy of our species's evolutionary history.
The Extended Mind - Annie Murphy Paul

We inherited a "mind on the hoof," in the phrase of philosopher Andy Clark-but in today's classrooms and offices, the vigorous clatter of hoofs has come to an eerie halt.

What this attitude overlooks is that the capacity to regulate our attention and our behavior is a limited resource, and some of it is used up by suppressing the very natural urge to move.
The Extended Mind - Annie Murphy Paul

The suppression of our need to fidget, stim, and move results in the exclusion of neurodivergent people from school. We have turned classrooms into a hell for neurodivergence. Suppressing fidgeting contributes to that.

Within the constant overwhelm is a pilot flame of anxiety, burning always. Anxiety and overwhelm, the torrid pas de deux that belies the silent, almost still compliance. Their dance is steam and froth, resonance foam on the sensory ocean I swim beneath the almost stillness - still but for the tugging of my hair. Don't disallow me that, but some of them will. Fidgeting is a threat.
CHAMPS and the Compliance Classroom - Stimpunks Foundation

Offer bodymind affirmations and provide outlets for stimming, pacing, fidgeting, and retreating. At Stimpunks, we use this bodymind affirmation before all meetings/gatherings:

"We should all move in our space in whatever way is most comfortable for our bodyminds. Please use this space as you need or prefer. Sit in chairs or on the floor, pace, lie on the floor, rock, flap, spin, move around, come in and out of the room. This is an invitation for you to consider what your bodymind needs to be as comfortable as possible in this moment. This is an invitation to remind yourself to remember and to affirm that your bodymind has needs and that those needs deserve to be met, that your bodymind is valuable and worthy, that you deserve to be here, to belong."
Lydia X. Z. Brown

We like to share the video " Walk In My Shoes " for a taste of what life is like for a hypersensory autistic person in school.

CYP = Children and Young People

Fidgeting and doodling can help with sensory overwhelm. It can help autistic CYPs filter and find a focus. This supports thinking and learning.
Lisa Chapman @CommonSenseSLT

Fidgeting and doodling help if you are feeling overwhelmed by providing rhythmical proprioceptive, tactile and visual input. They are forms of stimming. Stimming can be joyful as well as for regulation.
Lisa Chapman @CommonSenseSLT

Stimming can also provide controllable and rhythmical sound input. Stimming is a great way to regulate & can be a great tool for teachers to recognise & use to support #ActuallyAutistic CYPs
Lisa Chapman @CommonSenseSLT

The physical & emotional effects of having to work hard to filter, keep focussed, use additional sensory supportive strategies all day long, just to keep up with everyone else are ENORMOUS.
Lisa Chapman @CommonSenseSLT

School is child prison. It's forcing kids to spend their childhood - a happy time! a time of natural curiosity and exploration and wonder - sitting in un-air-conditioned blocky buildings, cramped into identical desks, listening to someone drone on about the difference between alliteration and assonance, desperate to even be able to fidget but knowing that if they do their teacher will yell at them, and maybe they'll get a detention that extends their sentence even longer without parole.
Book Review: The Cult Of Smart - by Scott Alexander

We're Tired of "Quiet Hands!"

Autistic people (and others with developmental disabilities) have been fighting a war for decades. It's a war against being forcibly, often brutally, conditioned to behave more like neurotypicals, no matter the cost to our own comfort, safety, and sanity. And those of us who need to stim in order to concentrate (usually by performing small, repetitive behaviors like, oh I don't know, spinning something) have endured decades of "Quiet Hands" protocols, of being sent to the principal's office for fidgeting, of being told "put that down/stop that and pay attention!," when we are in fact doing the very thing that allows us to pay attention instead of being horribly distracted by a million other discomforts such as buzzing lights and scratchy clothing. We've had our hands slapped and our comfort objects confiscated. We've been made to sit on our hands. We've been tied down. Yes, disabled children get restrained-physically restrained-in classrooms and therapy sessions and many other settings, for doing something that has now become a massive fad.
What the Fidget Spinners Fad Reveals About Disability Discrimination - THINKING PERSON'S GUIDE TO AUTISM

In a classroom of language-impaired kids, the most common phrase is a metaphor.

"Quiet hands!"

A student pushes at a piece of paper, flaps their hands, stacks their fingers against their palm, pokes at a pencil, rubs their palms through their hair. It's silent, until:

"Quiet hands!"

I've yet to meet a student who didn't instinctively know to pull back and put their hands in their lap at this order. Thanks to applied behavioral analysis, each student learned this phrase in preschool at the latest, hands slapped down and held to a table or at their sides for a count of three until they learned to restrain themselves at the words.

The literal meaning of the words is irrelevant when you're being abused.
Quiet Hands | Just Stimming...
We're Tired of "Cop Shit"

The contemporary classroom is a bastion of neuronormativity. "Cop Shit" is abundant and on trend. The fight for the right to learn differently is a continuous confrontation with authoritarians with bad framing.

So why do we have cop shit in our classrooms?
One provisional answer is that the people who sell cop shit are very good at selling cop shit, whether that cop shit takes the form of a learning management system or a new pedagogical technique. Like any product, cop shit claims to solve a problem. We might express that problem like this: the work of managing a classroom, at all its levels, is increasingly complex and fraught, full of poorly defined standards, distractions to our students' attentions, and new opportunities for grift. Cop shit, so cop shit argues, solves these problems by bringing order to the classroom. Cop shit defines parameters. Cop shit ensures compliance. Cop shit gives students and teachers alike instant feedback in the form of legible metrics.

In short, cop shit operates according the the logic of datafication. Indeed, the rise of ed tech has seen the multiplication and proliferation of unprecedented forms of cop shit. See, for instance, this illuminating post on the "The 100 Worst Ed-Tech Debacles of the Decade," published at the end of last year. It's a murderer's row of cop shit.

Cop shit is seductive. It makes metrics transparent. It allows for the clear progress toward learning objectives. ("Badges" are cop shit, by the way.) It also subsumes education within a market logic. "Here," cop shit says, "you will learn how to do this thing. We will know you learned it by the acquisition of this gold star. But in order for me to award you this gold star, I must parse you, sense you, track you, collect you, and-" here's the key, " I will presume that you will attempt to flout me at every turn. We are both scamming each other, you and I, and I intend to win." When a classroom becomes adversarial, of course, as cop shit presumes, then there must be a clear winner and loser. The student's education then becomes not a victory for their own self-improvement or -enrichment, but rather that the teacher conquered the student's presumed inherent laziness, shiftiness, etc. to instill some kernel of a lesson.
Against Cop Shit | Jeffrey Moro

What Makes a Good Teacher?

Benton

1

High levels of auditory stimulation and physical movement

Fidget tools; being allowed to stand up and spin; learning through discussion

Silent working; exam conditions; being told off for fidgeting

Daz

1

High levels of somatosensory stimulation
Chewing gum to concentrate; biting pens; being allowed to move in seat
Having chewing gum confiscated and then being told off for chewing on shirt collar; being told to sit still

Jeffrey

1

High levels of personal space and
regulation of
temperature

Being allowed to sit near a window for ventilation; being allowed to remove blazer/jumper

Seating plans where placement was next to a student that 'spread out' their belongings

Lewis

1

Low levels of auditory
stimulation; high levels of personal space

Individual working; quiet lessons; being allowed to take 'time out' in the classroom

Enforced group work; noisy, moving classes (e.g. PE, DT) without a quiet space

Yazi

2

Low levels of auditory stimulation; high levels of physical movement
Being allowed to fidget and doodle while listening to instructions Being told off for reading a book rather than talking to peers

Hanzo

2

High levels of both auditory
stimulation and
physical movement

Energetic and noisy tasks; large group work; being allowed to use fidget toy

Silent working; being told off for fidgeting; working with unfamiliar students

Bob

2

Low levels of both
auditory and visual
stimulation

Whole class instruction; being 'leader' in a group; pair work

Working with unfamiliar students

Jack

2

High levels of both
auditory and visual stimulation

Colour-coding to keep subjects organised; using interests for projects (e.g. creative writing essay)

Being told off for inappropriate affect; instructions not given face to face (e.g. shouted across the room)

When our community advocates for neurodiversity-affirming practices instead of more cop shit, we meet these obstacles.

10 Obstacles to Neurodiversity Affirming Practice

(links are to our glossary, where you can learn much more)

politics of resentment = manipulations of status anxiety; organization of interest groups based on perceived deprivation or the threat of deprivation

sameness-based fairness = notion of fairness where everyone gets the same thing rather than each getting what they need

fundamental attribution error = to underestimate the impact of situational factors and to overestimate the role of dispositional factors in controlling behaviour

conquering gaze from nowhere = the interpretation of objectivity as neutral and not allowing for participation or stances; an uninvolved, uninvested approach that claims objectivity to "represent while escaping representation"

scientism = the belief that science is the only route to useful knowledge

epistemic injustice = where our status as knowers, interpreters, and providers of information, is unduly diminished or stifled in a way that undermines the agent's agency and dignity

behaviorism = a dehumanizing mechanism of learning that reduces human beings to simple inputs and outputs

ableism = a system of assigning value to people's bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness

deficit ideology = a worldview that explains and justifies outcome inequalities by pointing to supposed deficiencies within disenfranchised individuals and communities

better get used to it = preparing people for oppression by oppressing them

"Ed bro rationalists" confront us with studies framed in scientism and epistemic injustice that are abused to justify abusing us and further suppressing us.

You can't reduce the complexity of learning and our lived experience to studies that measure the surface, badly. We're raising whole children, not frankenstein children.

Don't be an ed bro.

Don't be a cop.

Be a teacher.

Anyone trying to police other people's self-identities is just another tedious cop, and a cop is pretty much the most un-queer, non-liberatory thing a person can be.
Walker, Nick. Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities (pp. 166-167). Autonomous Press.

Activity-Permissive Settings

ACTIVITY-PERMISSIVE SETTINGS are still the exception in schools and workplaces, but we ought to make them the rule; we might even dispense with that apologetic-sounding name, since low-intensity physical activity clearly belongs in the places where we do our thinking. Meanwhile, medium- and high-intensity activity each exerts its own distinct effect on cognition-as the psychologist Daniel Kahneman has discovered for himself.
The Extended Mind - Annie Murphy Paul

We're tired of "Quiet Hands!"

We're tired of "Cop Shit".

We want Activity-Permissive Settings.

Let us fidget and stim.

"Sitting quietly," the researchers conclude, "is not necessarily the best condition for learning in school."

The continual small movements we make when standing as opposed to sitting-shifting our weight from one leg to another, allowing our arms to move more freely-constitute what researchers call "low-intensity" activity. As slight as these movements appear, they have a marked effect on our physiology:

It's not only that such activity-permissive setups relieve us of the duty to monitor and control our inclination to move; they also allow us to fine-tune our level of physiological arousal. Such variable stimulation may be especially important for young people with attention deficit disorders. The brains of kids with ADHD appear to be chronically under-aroused; in order to muster the mental resources needed to tackle a difficult assignment, they may tap their fingers, jiggle their legs, or bounce in their seats. They move as a means of increasing their arousal-not unlike the way adults down a cup of coffee in order feel more alert.

She found that more intense physical movement was associated with better cognitive performance on the task. The more the children moved, in other words, the more effectively they were able to think. Parents and teachers often believe they have to get kids to stop moving around before they can focus and get down to work, Schweitzer notes; a more constructive approach would be to allow kids to move around so that they can focus.

Even among those without an ADHD diagnosis, the amount of stimulation required to maintain optimal alertness varies from person to person. Indeed, it may differ for the same individual over the course of a day. We have at our disposal a flexible and sensitive mechanism for making the necessary adjustments: fidgeting. At times we may use small rhythmic movements to calm our anxiety and allow us to focus; at other moments, we may drum our fingers or tap our feet to stave off drowsiness, or toy with an object like a pen or a paperclip as we ponder a difficult concept. All of these activities, and many others, were submitted to researcher Katherine Isbister after she put out a call on social media for descriptions of people's favorite "fidget objects" and how they used them.

Her research and that of others suggests that fidgeting can extend our minds in several ways beyond simply modulating our arousal. The playful nature of these movements may induce in us a mildly positive mood state, of the kind that has been linked to more flexible and creative thinking. Alternatively, their mindless and repetitive character may occupy just enough mental bandwidth to keep our minds from wandering from the job at hand. One study found that people who were directed to doodle while carrying out a boring listening task remembered 29 percent more information than people who did not doodle, likely because the latter group had let their attention slip away entirely.

Perhaps most intriguing is Isbister's theory that fidgeting can supply us with a range of sensory experiences entirely missing from our arid encounters with screen and keyboard. "Today's digital devices tend to be smooth, hard, and sleek," she writes, while the fidget objects she crowdsourced exhibit "a wide range of textures, from the smoothness of a stone to the roughness of a walnut shell to the tackiness of cellophane tape." The words contributors used to describe their favored objects were vivid: such articles were "crinkly," "squishy," "clicky-clackety"; with them they could "scrunch," "squeeze," "twirl," "roll," and "rub." It's as if we use fidgeting to remind ourselves that we are more than just a brain-that we have a body, too, replete with rich capacities for feeling and acting. Thinking while moving brings the full range of our faculties into play.
The Extended Mind - Annie Murphy Paul

"I don't think fidget spinners should be banned. Teachers are often out of their depth with children with disabilities - the logic often is 'I don't understand it so get rid of it'.
Dr Sue Fletcher-Watson, Fidget spinners 'soothing' for autistic children and blanket ban in Scotland would 'miss the point', claims expert | The Scottish Sun

Regulatory and Adaptive Roles of Fidgeting

while stimming I am able to unravel the everyday ordinary barrage of sensory and social information that becomes overwhelming.
The Predictability, Pattern and Routine of Stimming | Judy Endow

Most of us stim because it calms us and helps alleviate our high levels of anxiety.
Siena Castellon

I can't picture things in my head sitting still. I like to walk around and think. Young Autistic Stimpunk

Sometimes I need a mind/body break. I need to be alone, I need to be in my head, and I need to stim. I stim by flapping my arms and clapping my hands while pacing. Stimming is a necessary part of sensory regulation. Stimming helps keep me below meltdown threshold.
We're Autistic. Here's what We'd like you to know.

Restricted and repetitive behaviours and interests (RRBIs) have regulatory and adaptive roles.

RRBIs help regulate sensory experiences.

RRBIs can be strategies to cope with anxiety and introduce control to the environment.

RRBIs help autistics to make sense of their worlds.

Identifying the functions of restricted and repetitive behaviours and interests in Autism: A scoping review. - ScienceDirect

"What these fidget toys do is help reduce anxiety and manage sensory confusion - they give you something to focus on and allow you to block out other things that are harder to deal with.

"For autistic kids the classroom is already distracting - it's colourful, disorganised, full off visual concepts, everyone is talking and they're surrounded by smells from the teacher's perfume to kids' shampoo.

"It can be very overwhelming for autistic child - so something that gives a single focus is not a distraction, it's the opposite, and enables them to carry on with their work.

"Lots of people will create their own sensory stimulation by flicking their hands or fingers - this is something we've known autistic children do to cope.

"There is the issue of distractability with ADHD, so the principle of providing a soothing focus could be beneficial.

"I think comes down to whether people willing to work with someone with ADHD or work against them."

Dr Sue Fletcher-Watson, Fidget spinners 'soothing' for autistic children and blanket ban in Scotland would 'miss the point', claims expert | The Scottish Sun

As the autistic experience of the world differs from that of non-autistic people, so too does autistic behaviour. Understanding what is usual for an autistic patient facilitates care. Repetitive behaviour, which is common to autistic people, is termed 'stimming'. It varies in manifestation and function, but may include hand flapping, whole body movements or the subtle use of fidget tools. In stressful situations, anxiety may be alleviated by stimming, so we advise encouraging the use of whatever tools a patient finds beneficial.
Autism and anaesthesia: a simple framework for everyday practice - ScienceDirect

Accept different expressions of sensory and communication preferences in employees as different but not wrong. Some people may prefer not to make direct eye contact or may use unconventional body language. Feeling free to stim (e.g., fidgeting, pacing, or chewing a pencil), or comfortable to show tics (including eye blinking, throat clearing) can help people to feel well regulated and to manage stress and anxiety.
Beyond Accommodations: Supporting Autistic Health Professionals: Practice based guide for employers and employees

Predictive processing shows how seemingly pointless actions like fidgeting in fact can serve an uncertainty-reducing function.

To resolve mounting uncertainty about the world, agents perform simple and precise actions, confirming their self-model.

This proposal is extended to autistic stimming, which can be understood as a form of fidgeting.

Fidgeting as self-evidencing: A predictive processing account of non-goal-directed action - ScienceDirect

Autistic adults highlighted the importance of stimming as an adaptive mechanism that helps them to soothe or communicate intense emotions or thoughts and thus objected to treatment that aims to eliminate the behaviour.
Furthermore, more recent theories have suggested that stimming may provide familiar and reliable self-generated feedback in response to difficulties with unpredictable, overwhelming and novel circumstances (e.g. Lawson, Rees, & Friston, 2014; Pellicano & Burr, 2012). As such, stimming may provide not only relief from excessive sensory stimulation, but also emotional excitation such as anxiety (Leekam, Prior, & Uljarevic, 2011). Consistent with these suggestions, autistic adults report that stimming provides a soothing rhythm that helps them cope with distorted or overstimulating perception and resultant distress (Davidson, 2010) and can help manage uncertainty and anxiety (e.g. Joyce, Honey, Leekam, Barrett, & Rodgers, 2017).

Reflecting the aims of popular interventions, language surrounding the topic of stimming is often pejorative (Jaswal & Ahktar, 2018). Researchers sometimes assume that stimming falls within voluntary control and has asocial or antisocial motivations (Jaswal & Ahktar, 2018; Lilley, in press). For example, a prominent review of repetitive behaviours in autistic people attributed the onset of stimming to a 'self-imposed restricted environment' (Leekam et al., 2011, p. 577). Stimming has become so associated with autism that some scientists and clinicians use the term 'stims' interchangeably with 'autistic behaviour' (Donnellan, Hill, & Leary, 2013). Furthermore, therapies continue to treat stimming despite lacking strong evidence of efficacy or ethics (Jaswal & Akhtar, 2018; Lilley, in press). While researchers increasingly acknowledge limitations in the understanding of, and interventions for, stimming (e.g. Harrop, 2015; Patterson, Smith, & Jelen, 2010), treatments may remain popular, in part because many parents regard it as noticeable and stigmatising (Kinnear, Link, Ballan, & Fischbach, 2016).

Autistic people have become increasingly mobilised and vocal in defence of stimming. Autism rights or neurodiversity activists believe that stims may serve as coping mechanisms, thus opposing attempts to eliminate non-injurious forms of stimming (e.g. Orsini & Smith, 2010). They decry practices such as 'quiet hands' (which teaches the suppression of hand flapping), instead using 'loud hands' as a metaphor both for using such non-verbal behaviour to communicate and for cultural resistance more broadly (Bascom, 2012). In addition, autistic scholar-activists denounce attempts to reduce their bodily autonomy (Nolan & McBride, 2015; Richter, 2017) and declarations of their stimming as unacceptable or as necessarily involuntary (Yergeau, 2016).
'People should be allowed to do what they like': Autistic adults' views and experiences of stimming - Steven K Kapp, Robyn Steward, Laura Crane, Daisy Elliott, Chris Elphick, Elizabeth Pellicano, Ginny Russell, 2019

Acceptance and Sensory-Based Approaches

"We need to identify childrens' strengths in school and identify the tools to help them - fidget toys are part of that toolkit."
Dr Sue Fletcher-Watson, Fidget spinners 'soothing' for autistic children and blanket ban in Scotland would 'miss the point', claims expert | The Scottish Sun

Research exploring general mental health has highlighted empirical evidence supporting the benefits of sensory-based approaches in the general population, where the physical environment is tailored to the sensory processing characteristics of an individual [397-401]. Sensory-based approaches can include strategies such as adjusting the room's lighting and/or colours, providing access to weighted blankets, fidget tools, rocking chairs, and/or noise- cancelling headsets to reduce sensory stimulation. Sensory-based mental health approaches have been shown to create a sense of safety and control, increase self-regulation, reduce distress and anxiety, improve self-perception, and help with stabilising (or 'grounding') acute arousal [399, 401]. There is also emerging evidence suggesting that sensory-based approaches in inpatient mental health facilities may contribute to improvements in autistic individuals' wellbeing and self-regulation [372, 402-403], giving further weight to the argument in support of ED services attending to the unique sensory needs of NDI.

Neurodivergence, Intersectionality, and Eating Disorders: A Lived Experience-Led Narrative Review

Encourage the use of comfort items and sensory aids such as noise-cancelling headphones, including right up to induction of anaesthesiawhere feasible. It is helpful to have a supply of inexpensive sensory aids available; these can include disposable ear plugs, sunglasses and a selection of fidget tools or tactile sensory aids.
Autism and anaesthesia: a simple framework for everyday practice - ScienceDirect

An autistic partner told us, "Having a visible box of fidget toys is something I find helpful, it's a cue that this person/environment is safe to be myself".
Beyond Accommodations: Supporting Autistic Health Professionals: Practice based guide for employers and employees

And the fact is, it's easy. I've watched teachers create classrooms where every learner can get fully comfortable. They choose where, how, or if to sit. They lie on the floor and sit on the window sills, dangling their feet. They sit on couches. They have phones and often earbuds or headphones. The lighting is provided by thrift store task lighting. There are views out the windows and at least one blank wall that doesn't assault learners' vision. They're not painted white (the medical field learned in the 1970s that white spaces increased pain perception for most patients). Learners can get up and walk out to a water fountain, to the toilet, just to walk, without anyone's permission. They can eat, drink, fidget, and change positions. They can find something very close to privacy. In other words, everyone in the room can be a real human.
The Path to Equity Begins with Neuroqueer-Sensitive Learning Spaces - Stimpunks Foundation

Make Peace with Fidgeting: Think of It as Brain Development, Which It Is.

Ewan McIntosh echoes the Third Teacher in saying that teachers should 'make peace with fidgeting' , and realise that growing bodies often process information while moving.
Re-imagining Learning Spaces to inspire contemporary learning - Part One: Models for Change - Linking Learning

Building a place to play and release energy, while providing tactile surfaces and activities; the need to fidget is pacified.

Make Peace With Fidgeting: Think of It as Brain Development, Which It Is., Make Peace With Fidgeting | Learning Ecologies Design Studio

Fidgeting, Monotropism, and Flow

Monotropic learners may find it more challenging to focus on a subject that is not intrinsically motivating for them. Fidget tools, doodling, and moving can all help to maintain a flow state, which may help some children cope better and be more regulated. It could improve concentration and learning outcomes and make learning a more enjoyable, less stressful experience. Monotropism is fluid; what works for one person may not work for another, and needs may vary from moment to moment depending on many social, physical, and sensory factors.
Embracing Autistic Children's Monotropic Flow States

The Calm Joy of Engaging with Preferred Items

According to most autistic teenagers ( N = 38), engagement with highly preferred items and activities helps them reach a state of calm happiness that cannot be compared with any other activity. This was often related to reaching a certain level of stimulation with activities that are not too easy or too hard, handling objects of great interest ' independently, without interruptions (...) and developing a thinking routine around the ' details of the objects and its history. '

They are all soft [the toy's collection] and bring nice memories, some are presents from people I love (...) some are fidget toys to keep my hands busy and some (...) I have them all in a basket and go for them (...) [They] help me unwind my mind as I stare the ceiling trying to sleep.

Frontiers | A Good Night's Sleep: Learning About Sleep From Autistic Adolescents' Personal Accounts

Autistic Movement

In conclusion, body movements have both stigmatised and non-stigmatised appearances for autistic adults, but these cannot be distinguished by the function of the movement. Expressive, regulating and repetitive movements can be a well-being resource for autistic people. Implications for practice are discussed.
The meaning of autistic movements - Stephanie Petty, Amy Ellis, 2024

Conflicting Needs

Conflicts between the access needs of different individuals should be negotiated in class as part of the learning process.
Walker, Nick. Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities (p. 152). Autonomous Press.

Freedom of Embodiment

...freedom of embodiment-that is, the freedom to indulge, adopt, and/or experiment with any styles or quirks of movement and embodiment, whether they come naturally to one or whether one chooses them-is an essential element of cognitive liberty, and thus an essential area of focus for the Neurodiversity Movement. The freedom to be autistic necessarily includes the freedom to give bodily expression to one's neurodivergence.
Walker, Nick. Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities (pp. 142-143). Autonomous Press.

Further Reading

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The tight connection between thinking and moving is a legacy of our species's evolutionary history.

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"As time has gone on, it has become clear that many diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) also identify strongly with many aspects of monotropism. I want to explore this by looking at the diverse ways that autism and ADHD present; where the traits associated with ADHD fit in with monotropism in an obvious way, and where they might seem to be in tension; and what this might mean for how we think about diagnoses and neurodiversity."

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Fergus Murray with Sonny Hallett (2023) Monotropism was formulated as a theory of autism. It seeks to explain the experiences and traits of autistic people in terms of a tendency for resources like…

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Neurotypicals Don't Juggle Chainsaws (neurotypicalsdontjugglechainsaws.co.uk)

Fab podcast where autism and neurodivergence are discussed in 30 minute episodes in a really easy-listening & approachable way

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Sensory processing podcast | Autism Central

a new podcast, bringing together autistic people, parents, carers and professionals to talk about different aspects of autism. Our first series focuses on sensory processing and is hosted by Holly Sprake-Hill, a neurodivergent occupational therapist

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A new podcast from Autism Central, in this series, we bring together autistic people, parents, carers and professionals to talk about different aspects of autism. Our first series focuses on sensory processing and is hosted by Holly Sprake-Hill, a neurodivergent occupational therapist.

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The Late Discovered Club is a podcast that gives late discovered autistic women and marginalized genders a voice. We bring you real life self-discovery stories, and compassionate conversations with some truly incredible women and people.

Created and hosted by Psychotherapist Catherine Asta whose own self discovery came at 42.

In each episode Catherine will be exploring real and empowering stories of late discovered autistic women and people, from all walks of life - through an intersectional lens - helping to deconstruct stereotypes, and give visibility to the next generation.

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The Late Discovered Club is a podcast that gives late discovered autistic women and marginalized genders a voice. We bring you real life self-discovery stories, and compassionate conversations with some truly incredible women and people.

Created and hosted by Psychotherapist Catherine Asta whose own self discovery came at 42.

In each episode Catherine will be exploring real and empowering stories of late discovered autistic women and people, from all walks of life - through an intersectional lens - helping to deconstruct stereotypes, and give visibility to the next generation.

The Late Discovered Club is a podcast that gives late discovered autistic women and marginalized genders a voice. We bring you real life self-discovery stories, and compassionate conversations with some truly incredible women and people.

Created and hosted by Psychotherapist Catherine Asta whose own self discovery came at 42.

In each episode Catherine will be exploring real and empowering stories of late discovered autistic women and people, from all walks of life - through an intersectional lens - helping to deconstruct stereotypes, and give visibility to the next generation.

Unbelievable relief knowing I'm not an alien or alone.

I have only just come across this podcast and Insta account and I am so thankful they exist.
I had my lightbulb moment about a year ago and have be researching my socks off. I have my official assessment in January and I am very nervous!
Hearing the 1st ep of the 1st series it's like listening to me tell my accounts of my experiences. It is so unbelievably relieving to hear that many, many other females have gone through the struggles I have and coped this long wondering why I am like this.
Thank you so much.

An interesting listen...not just for ND people!

I found this podcast recently- I find it a really good format and Catherine's interview style is gentle yet probing. The variety of guests from different places, professional backgrounds etc has given me something to think about after every episode.

A masterclass is vulnerability

If the first two episodes are anything to go by the rest of this podcast series is going to be incredible listening. I related to so much of what was shared in the first episode, way more than anticipated actually and whilst it seems too easy and trite to say I felt seen it's the only suitable response. Bravo Catherine for your bravery and desire to help make life better for so many of us who are understood.

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‎The Late Discovered Club on Apple Podcasts

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The Late Discovered Club is a podcast that gives late discovered autistic women and marginalized genders a voice. We bring you real life self-discovery stories, and compassionate conversations with some truly incredible women and people. Created and hosted by Psychotherapist Catherine Asta whose ow...

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https://theconversation.com/how-autistic-and-non-autistic-people-can-understand-each-other-better-234320

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Autistic people often experience difficulties with social communication. It's so common, in fact, that it's one of the central criteria for an autism diagnosis.

For as long as we have been diagnosing autism, doctors and researchers have regarded social communication difficulties as autistic "impairments". But in more recent years, research has begun to show that - just like autistic people have been saying for a long time - communication breakdowns go both ways.

In other words, neurotypical people can have just as much difficulty understanding autistic people as the other way round. This is now sometimes referred to as "the double empathy problem".

In my new book, Understanding Others in a Neurodiverse World, I draw on linguistics, the study of language, to look at the double empathy problem a little more closely. And I consider how autistic and non-autistic people can better communicate with each other.

In the world of linguistics there is an idea called "relevance theory", which tries to make sense of how it is that any of us understand what another person means.

For example, if you hear me say "it's getting a bit chilly", depending on the context, there are a number of things I might mean by this. I might mean: "I'm cold". But I could just as easily mean: "could I borrow a jumper please?" or: "is it okay if I shut the window?". Or even: "it's probably time to head home soon," and any other number of things.

Words, in essence, don't mean much. To work out the right interpretation of my words, you need to be able to correctly gauge what I wanted you to understand, or my "intended meaning". We do this all the time with each other.

Yet historically, early autism researchers assumed that misunderstandings between autistic and non-autistic people were due to autistic people not being very good at recognising intentions. We now know that these misunderstanding run both ways and relevance theory can help us understand why.

Because there are often so many potentially different ways we can interpret somebody's words, our brains rely on shortcuts to help us identify the most relevant interpretation. This is calculated by weighing up how much effort you need to put in when working out someone's intended meaning. The more similar we are to another person, the more likely it is that we think the same way, meaning less effort is required to find a relevant interpretation.

Herein lies the problem. Autistic and non-autistic people experience the world and think very differently. So, what is relevant to an autistic person may not be relevant to a non-autistic person. And vice versa.

It's important to recognise this because difficulties with social communication can affect all areas of an autistic person's life.

For example, communication difficulties between autistic people and their healthcare providers contribute to the significantly poorer physical and mental health outcomes that autistic people experience. This includes a life expectancy that is significantly reduced compared to neurotypical people and a higher prevalence of serious medical conditions such as diabetes and hypertension than remain untreated for longer.

Read more: Autistic people experience loneliness far more acutely than neurotypical people - new research

Difficulties with social communication can lead to far higher rates of loneliness and social isolation among autistic people. Social communication challenges also contribute to the barriers that autistic people experience in education, employment and in accessing secure housing.

How can we improve things?

One of the most useful things that neurotypical people can do when engaging with autistic people is to not make assumptions about there being common ground.

One useful example of this is when we talk with people from another culture or language background. In such circumstances, we often make extra mental efforts to consider the different ways they may be thinking. This is something that can really help to improve communication between autistic and non-autistic people.

Consider when you watch a TV show in a foreign language that you are somewhat familiar with. You try to tune your ear in to identify the intended message without worrying too much about every word or the exact grammar.

This works well when people use English as a lingua franca (Elf) in international and intercultural business settings. When two or more people from different language and socioeconomic backgrounds use English to communicate, they often start from varying points of reference and individual ways of thinking.

Different things will be more or less relevant to each of them. But Elf users make extra efforts to work out what their interlocutor is saying and develop new language norms together in the moment.

The American autistic rights activist Jim Sinclair gave a seminal speech at the 1993 International Conference on Autism in Toronto, Canada. In "Don't Mourn For Us", they offered an insight on communication still relevant today:

"It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood..."

Embracing this mindset could help to bridge the communication gap between autistic and non-autistic people, promoting better understanding, empathy and connection.

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How autistic and non-autistic people can understand each other better

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Misunderstandings between autistic and neurotypical people often stem from mutual communication barriers.

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Amanda Mc Guinness (@littlepuddins.ie) • Instagram photos and videos

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Amanda Mc Guinness | Autism Myths - Over the years I have read and heard so many autism myths 🙈 More recently I’ve been told I don’t look autistic 🙈… | Instagram

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Developing skills in self-advocacy can often seem confusing and frustrating. It requires us to be aware of our needs in a detailed way, while also being able to communicate them in a world that so often seeks to silence us. I have always argued that self-acceptance is the first step to self-advocacy, but in order to accept ourselves, we must first know ourselves.

When I found the autistic community, I found thousands of people who understood my experience in a way that others simply could not. It was in this understanding that they taught me the vocabulary that I needed to describe my strengths and struggles (in fact, I did not even know the words to describe my most basic autistic behaviours, such as 'stimming'). Truth be told, after diagnosis at the age of 26 I was largely left on my own, not knowing any other autistic people, and not even understanding my own behaviours. I find myself ashamed to admit that I started to get sucked in by cure talk (not quack cures, in my mind there would one day be an answer from REAL science).

One of my first introductions to the autistic community was a website known as Autistic Not Weird run by the wonderful Chris Bonello. Between his articles and the Facebook page of the same name, I was able to start to learn about what it meant to be autistic. Chris created an environment online where autistics and their neurotypical counterparts could learn about autism and celebrate it. I also discovered the work of Sara Harvey, also known as Agony Autie. Sara's What's That? Series on YouTube was vital in giving me the language I needed to describe my autistic behaviours. This was crucial; prior to this I had spent my life believing that I was completely alone in my behavioural experiences, doomed to forever be an outcast.

The more time I spent in the autistic community, the more I felt my own internalised ableism slip away. As I learned about my neurology, I learned to love myself for who I was, this self-acceptance has slowly led me towards a place where I have been able to advocate for my own needs. These days I am proud to stand against cure rhetoric, fully accepting of my own mind. Of course these days I face the people who tell me that I should not label myself, or define myself by my diagnosis. To those who say that diagnoses and labels are bad, I ask you this; How can a person accept themselves if the do not know who they are? Yes, I am defined by my diagnosis, and I was defined by it before I was diagnosed formally. Being autistic is an inseparable part of my neurology, without my autistic brain, I would not be the person I am.

By meeting those who supported me to be myself, I learned to accept myself. Learning about autistic acceptance is to learn of self-acceptance for the autistic mind. A prime example of the importance of the autistic community for me, was when I attended my local autistic pride picnic for the first time. I was able to be around other autistic people, celebrating a growing culture of acceptance. I was also lucky enough to meet Emma Dalmayne, a huge player in the world of autistic rights advocacy. People like Emma have shown me that not only are we a proud group of people, but we will defend ourselves and those like us fiercely, standing up for what is right, and standing against the abuse of quack cures and therapies.

In a perfect world, all those on a path to diagnosis, or who have received diagnosis, would be directed to the autistic community. Unfortunately, autism professionals still have a lot of work to do when it comes to listening to autistic voices. Until that time the community at large must make itself as visible as possible, such that all who need us can find us.

There is no shame in admitting that we have previously existed in a lack of knowledge, but it is vital that those of us who have found the knowledge of self-acceptance pass it forward, making the world a better place for all autistics and those to come after us. We owe it to the next generation to show them that the world has a place for them, and that in this place they will always be welcome. All autistics deserve to accept themselves for who they are.

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How Finding Autistic Community Leads to Self-Acceptance - THINKING PERSON'S GUIDE TO AUTISM

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We owe it to the next generation of autistics to show them the world has a place for them, and that they will always be welcome.

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Creating hope through autistic community - Spectrum Gaming

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Creating hope through autistic community - Spectrum Gaming

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https://padlet.com/spectrumgaming/barriers-to-education-1bnrx2lf6iwfck52

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https://padlet.com/spectrumgaming/barriers-to-education-1bnrx2lf6iwfck52

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Why CBT may not be the answer for anxiety in autistic CYP

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Why CBT may not be the answer for anxiety in autistic CYP

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Why CBT May Not Be the Answer for Anxiety in Autistic Children – Raelene Dundon

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Around 40% of Autistic children and adolescents experience clinical levels of anxiety. When we compare this to the incidence of anxiety in the neurotypical population, which is about 15%, it is obvious that this is a big issue for Autistic youth and is something we need to get better at identifying and addressing.

When I talk about clinical levels of anxiety, I am not talking about feeling a little nervous about going to a new place or performing in front of a class; it is anxiety that impacts on a child's ability to do everyday things without distress, and negatively affects their quality of life.

You may have heard anxiety mentioned with regard to Autism as just something that all Autistic individuals experience because of differences in communication and social interaction that make the world uncertain at times. Or perhaps that the way our brains work makes us more sensitive to stress and experiencing anxiety. Yes, for many Autistic individuals the uncertainty of the neurotypical world makes situations anxiety provoking, and yes, Autistic brains appear to be more susceptible to stress. But it is not as simple as that. Anxiety shouldn't be considered an inevitable part of the Autistic experience that children and adolescents have to just get used to because of their neurotype. If it is causing distress and limiting their ability to function, we should prioritise support.

We now know that the Autistic experience of anxiety can differ significantly from the non-autistic population and consequently often requires different approaches to supports. For example, even when an Autistic child or adolescent is demonstrating what appears to be separation anxiety, which is also experienced by neurotypical individuals, the driving cause of the anxiety may be different and they may therefore need different supports. The child may indeed be anxious that something will happen to a parent in their absence or that the parent will not come back to collect them at the end of school or kinder. Or the child could be experiencing difficulties with what Dr Wenn Lawson calls Object Permanence, resulting in the child cognitively being aware that the parent will return, but experiencing an intense emotional sense of loss and disconnection when the parent is out of sight. These different underlying causes for the anxiety need to be addressed in different ways.

Research suggests that some Autistic children and adolescents experience anxiety triggers that are similar to non-autistic individuals such as fear of spiders, dogs, separating from a parent, or taking a test. However, it has also been found that Autistic individuals can demonstrate fears and anxiety around more novel triggers such as, for example, men with beards, mannequins, and sensory stimuli (e.g. smells and sounds).

It also appears that while anxiety typically involves thoughts or cognitions as well as uncomfortable or distressing physiological changes, in Autistic individuals anxiety can occur without associated thoughts, particularly when a sensory stimuli is the trigger, making therapy approaches such as Cognitive Behaviour Therapy often ineffective. Unfortunately, it is common for therapists without an understanding of anxiety in Autistic individuals to assume that cognitions are present and insist that an Autistic child or adolescent identify these (possibly non-existent) thoughts to progress in therapy. This can result in the Autistic young person thinking that they are doing something wrong when they can't identify any thoughts that are causing them to feel anxious, but it is actually the therapist that is on the wrong track.

Further, for Autistic individuals with anxiety associated with sensory input, distress can result from being exposed to the sensory stimuli, and also in anticipation of being exposed. So a child who experiences loud noise as painful to their ears may have a physiological anxiety response when exposed to loud noise, but also be anxious about attending anywhere that may be noisy such as school assembly or a sporting event, resulting in them becoming distressed at the thought of being in these situations. For children with sensory based anxiety, accommodations to support their sensory needs are the most effective approach. More 'standard' interventions such as graded exposure actually cause the Autistic individual further distress and potential trauma because their sensory systems do not become desensitised with repeated exposure, however they are still regularly being used with Autistic children and adolescents in therapy due to a lack of understanding of the unique Autistic experience.

It is essential that parents, educators, and allied health professionals listen to Autistic children and adolescents to understand their experiences and seek out reliable information about how to provide the best possible supports for Autistic young people in their care. With better understanding of how anxiety can present in Autistic children and adolescents, and knowledge of approaches that can more effectively meet their needs, I am confident that we can make a difference to the wellbeing of Autistic youth and in turn the Autistic community as a whole.

If you found this article helpful and you would like to learn more, please join me on April 15 th 2024 for my webinar "Anxiety in Autistic Children: Causes, Consequences and Considerations." If you miss it, you'll be able to access the recording on my video site at https://videos.okeydokey.com.au.

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Why CBT May Not Be the Answer for Anxiety in Autistic Children

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Anxiety shouldn't be considered an inevitable part of the Autistic experience that children and adolescents have to just get used to because of their neurotype.

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Explaining neurodiversity/divergence terminology. A fabulous resource shared by Dr. C Farahar who is also part of the Aucademy team

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Explaining neurodiversity/divergence terminology. A fabulous resource shared by Dr. C Farahar who is also part of the Aucademy team

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https://aucademy.co.uk

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COPYRIGHT Dr C Farahar Neurodiversity terminology and chronology 2024 

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In order to better understand and support PDAers, it takes many people sharing their ideas and experiences. Please find a signposting list below which will grow over time. Happy Learning!

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Autism Level UP - the Essential Guide to Levelling Up

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Autism Level UP - the Essential Guide to Levelling Up

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ALUP Levels_English.pdf - Google Drive

Autism Level UP! Terms _ The Global Essential Guide - Google Drive

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Sensory Processing | AutisticSLT

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SENSORY PROCESSING

If we want to understand Autism, we must understand sensory processing. Autistic people have brains and bodies that experience the world differently than non-autistic people and the way we process information around us means that we can struggle to filter out sensory stimuli that causes distress. E.g., light, sound, movement, smells, temperature, pain etc. There are several sensory systems:

sight (vision)

hearing (auditory)

smell (olfactory

taste (gustatory)

touch (tactile)

vestibular (movement)

proprioception (body position)

​

We can be hypo-sensitive in some systems (so under reactive, seeking more input), or hyper-sensitive (so overreactive, needing to escape that input). For example - some people are hypersensitive to sound whereby they may need to wear ear defenders / ear plugs, they may cover their ears when alarms go off or dogs bark, or they might struggle filtering background noise when having a conversation. But they might also be under sensitive to proprioceptive input (body position) and seek deep pressure or tight clothing to stay regulated.

Another Autistic person may be under sensitive to sound and seek more input, so they might turn up the volume on the TV, love listening to loud music, or seek big noises. It's very common to be hypersensitive in 1 system but hyposensitive in another - which is what confuses a lot of people. Everyone has a unique sensory profile.

Mental health and sensory processing are linked.

If you see an Autistic child pull their hood up and put their head down in class, it could be that the noise is overwhelming and they're trying to shut the sound out. Or a child who climbs on the roof of a building and walks along the edge, it may be because it gives them unique proprioceptive input and also a sense of control. But what happens is that adults see these children as naughty / challenging but don't understand the factors that are driving the child to do those things. The takeaway message is always think about what's going on behind the presenting 'behaviour' rather than immediately assigning judgment onto it. We need a robust understanding of sensory processing and how this underpins Autistic experience.

Also known as an Autistic meltdown

A meltdown is not a tantrum - A meltdown is outside a person's control. A meltdown is a response to being completely overwhelmed. It is a loss of control. It can look like: crying, screaming, kicking, punching, biting, shouting. When someone is in a meltdown their ability to process spoken language drastically reduces. They may go mute and not be able to talk.

How to help someone when they're having a meltdown

Sensory overload is linked to mental health, and is frequently misunderstood by mental health professionals who don't understand Autism. Autistic people often present at A&E, police and ambulances might be called to the person's home, and Autistic people may be detained under the Mental Health Act (being sectioned). They then can be placed on psychiatric wards. These environments are awful places for Autistic people for a number of reasons:

Bright lights, loud noises, people shouting/screaming, uncomfortable clothes, hot rooms where windows are sealed shut, restraints, seclusion, staff not respecting body autonomy, unfamiliar foods with intolerable textures, unfamiliar people, no structure, people who don't understand autism or neurodiversity, inappropriate medication.

The person is left without ANY of their sensory strategies. No predictability. Not being to access special interests. No familiarity. Routine has suddenly changed. Rights are taken away. Nobody explains anything.

Stimming means 'self-stimulatory behaviours'. Stimming is a repetitive movement of some kind. When most people think of stimming they typically visualise an Autistic person hand-flapping. But there are MANY different types of stims which people may not know about.

There are also LOTS of reasons why Autistic people stim and it can vary depending on the context. A person can have different stims for different emotions, or for different situations.

to self-soothe

to self-regulate

to stimulate

to express emotion

to communicate

to process information

Humming

Screeching

Singing

Echolalia

Copying accents

Vocal

Olfactory

Visual

Auditory

Tactile

Physical

Jumping

Hand-flapping

Spinning in a chair

Bouncing your leg

Rocking

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What is sensory processing, stimming and sensory overload? Why is a meltdown different to a tantrum? Learn why mental health and sensory processing are linked. Why are so many autistic adults frequently (and wrongly) placed on psychiatric wards?

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Autism and Bilingualism (autism-bilingualism.com)

Explore our website to learn how bilingualism can be good for everyone. If you are a parent, you will find guides available in many languages. If you are a practitioner, we have key information here for you too.

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https://youtu.be/l_LA35VXv9g?si=fyTVaE5dAWn2jQ3b

20 minute watch

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From Burnout to Thriving: A Talk for Autistic Young People

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Interoception & Autism: A hidden link to substance use 

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Interoception & Autism: A hidden link to substance use 

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Interoception and Autism: A Hidden Link to Substance Use? (emergentdivergence.com)

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Interoception and Autism: A Hidden Link to Substance Use?

Autism and substance use is an area that received little discussion in wider society. In my own experience, their is an assumption that Autistic people are less likely to use drugs, however growing bodies of research are beginning to show what I have said for many year; substance use is a relevant discussion with regards to Autistic culture. Research has even suggested that Autistic people are nine times more likely to report self-medicating with recreational drugs ( Weir et al, 2021). One of the overlooked aspects of this is the impact of differences in our interoception.

What is interoception and why is it relevant to autism?

Interoception is the sensory system that allows us to feel what is happening in our body. It tells us when we are hungry, or our heart is pounding, it even tells us what emotion we're feeling based on internal sensations. This awareness of the signals within your body allows you to know how you're feeling and how safe a situation feels ( Mahler, n.d.).

Many Autistic people report differences in their interoceptive sense ( Neff, n.d.). These differences can lead to issues like alexithymia, relevant to discussions of autism as a potential explanation in our difficulty identifying and articulating our emotional state ( Gray-Hammond, 2023a). Around half of Autistic people are reported in literature to experience Alexithymia ( Kinnaird et al, 2019).

Knowing how we are feeling in a given situation allows us to know if we are safe, overwhelmed, in discomfort, and a wealth of other information. Alexithymia essentially means we can not regulate our emotions effectively in environments.

Why is this relevant to substance use in Autistic people?

Autistic people are known for self-stimulatory behaviour (AKA stimming). Much as an Autistic person can stim by flapping their hands or repeating words and sounds, they can also stim with their interoceptive sense. If a person struggles with their interoception, they might engage in activities that trigger particular interoceptive experiences ( Gray-Hammond & Adkin, 2023).

Interoceptive differences also affect our motivation to use or avoid drugs, with interoceptive differences being a growing field of research in substance use fields ( Paulus et al, 2013). So Autistic people are known to experience interoceptive differences, and be more likely to self-medicate their mental health. They are also more likely to experiences differences in their motivation to use drugs due to differences in their interoception.

Autism and substance use: The reality

Autistic people can use drugs and alcohol to induce feelings, or shut them off. For an Autistic person who is alexithymic, this might be highly attractive. Drugs give the Autistic person control of their emotions, which may come with a heavy energy burden to regulate, not to mention the ability to camouflage their Autistic traits in a discriminatory and hostile world ( Gray-Hammond, 2023b). Those same differences in interoception may also impact on our motivation to use or avoid drugs themselves. When we can't integrate the information we need to feel safe, drugs can alleviate the distress that arises.

In order to support Autistic drug users, we have to be treating the whole issue, not just the visible parts. Sensory differences play a significant role in the lives of Autistic people, and as such we can not separate them from discussions of autism and substance use. In my opinion, drug users in treatment need occupational therapy support as standard, particularly at the intersection with autism.

We can not forget that our sensory world forms the majority of our experience of life, therefore differences in this world mean that our engagement with substance use and recovery will also have differences. This is just one of the many ways that Autistic people are disadvantaged by the neuronormative structures in healthcare, and it's time that we address it.

References

Gray-Hammond, D. (2023a). What is alexithymia? emergentdivergence.com. https://emergentdivergence.com/2023/06/30/what-is-alexithymia/

Gray-Hammond, D. (2023b). Understanding Autistic people's relationship with drug use. emergentdivergence.com. https://emergentdivergence.com/2023/11/16/understanding-autistic-peoples-relationship-with-drug-use/

Gray-Hammond, D. & Adkin, T. (2023). Creating Autistic Suffering: Interoceptive stimming or "challenging behaviour"?. emergentdivergence.com. https://emergentdivergence.com/2023/09/18/creating-autistic-suffering-interoceptive-stimming-or-challenging-behaviour/

Kinnaird, E., Stewart, C., & Tchanturia, K. (2019). Investigating alexithymia in autism: A systematic review and meta-analysis. European Psychiatry, 55, 80-89.

Mahler, K. (n.d.) What is interoception? kelly-mahler.com. https://www.kelly-mahler.com/what-is-interoception/

Paulus, M. P., Stewart, J. L., & Haase, L. (2013). Treatment approaches for interoceptive dysfunctions in drug addiction. Frontiers in psychiatry, 4, 137.

Neff, M. A. (n.d.) Autism, Interoception, and How to Improve Your Awareness. neurodivergentinsights.com. https://neurodivergentinsights.com/blog/autism-interoception

Weir, E., Allison, C., & Baron-Cohen, S. (2021). Understanding the substance use of autistic adolescents and adults: a mixed-methods approach. The Lancet Psychiatry, 8(8), 673-685.

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Interoception and Autism: A Hidden Link to Substance Use?

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Autism and substance use is an area that received little discussion in wider society.

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Practical ideas to support autistic mental health

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Practical ideas to support autistic mental health

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Tweet (quick summary)

https://x.com/ItsEmilyKaty/status/1792984135218106729

Blogpost (more detail)

Autism and Mental Health: Practical Advice for Managing Your Mental Health — Authentically Emily

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A treasure trove of resources that help to reframe the narrative around ADHD, collated by the wonderful Ryan Boren at Stimpunks

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“Kinetic Cognitive Style” is a new way of thinking about ADHD. This guide will help you understand Kinetic/ADHD ways of being.

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Misophonia- strong emotional or physiological reactions to everyday sounds

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Misophonia- strong emotional or physiological reactions to everyday sounds

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https://x.com/AutisticGirls_/status/1787546715404271740

Misophonia can significantly impact individuals, requiring them to work harder than their neurotypical peers to navigate certain environments. What can help? Quiet, calm spaces, ear plugs, ear defenders, white noise, or minimising demands like group dining.

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https://amase.org.uk/glossary/

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Having a brain that differs significantly from the average (for example, autistic, dyslexic or ADHD).

Having a more typical brain; belonging to the neurological majority. Compare allistic, which simply means 'not autistic'.

The diversity of human brains and minds. A group of people with diverse brains is neurodiverse.

The neurodiversity paradigm accepts neurodivergences such as autism and ADHD as natural potentially valuable forms of human diversity, and rejects the idea that there is one kind of 'normal' brain that is inherently desirable.

The neurodiversity movement is the political manifestation of this perspective, pushing for full civil rights and inclusion of neurodivergent people.

Disability is the result of individual impairments which prevent people from fully partaking in activities others would take for granted. The deficit model of autism is an example of this, viewing autism in terms of deficits in the autistic person.

Disability is the result of interactions between individual differences and social context. A more accommodating society makes disabilities less disabling.

There is a common misconception that autistic people lack empathy, but in fact people in general have difficulty empathising with those who are very different from themselves. Research shows that allistic people find it at least as difficult to empathise with autistics as vice versa.

The psychological ability to get things done.

Inertia is resistance to a change in state. That can mean difficulty getting started, but it also includes difficulty changing tasks or stopping once you've started. This is one of the reasons autistic people can find sudden changes of plan distressing.

The uncontrollable repetition of actions, words or thoughts.

A cognitive style in which attention tends to be tightly focused - like a torch beam, rather than a lantern light. Posited as a theory of autism, this arguably helps to explain context-blindness, autistic inertia (heavily-invested attention is harder to shift), the atypical connections between ideas made by autistic people, the difficulty processing body language alongside spoken language, the intensity of sensory experiences, and other features of autism.

Putting the person first when describing people, as in 'a person with autism'. This is supposed to de-emphasise the condition, and is a style preferred by most professionals.

Putting the identity first, as in 'autistic person'. This is supposed to emphasise that a person cannot be separated from their autism, and is a style preferred by a large majority of autistic people.

Many autistic people have trouble tuning out sensory inputs. This can make bright, noisy, smelly environments exhausting and disorienting, which can often lead to the following.

A response to stress and sensory overload in which an autistic person loses control, usually visibly. Sometimes confused with a tantrum.

A response to stress and sensory overload in which an autistic person loses some abilities, such as the ability to produce or process speech, or make sense of sensory input.

Self-stimulating behaviour. Includes things like flapping, rocking and fidgeting, often used by autistic people as a form of self-regulation. Sometimes associated with anxiety, most autistics will also have the urge to stim when excited. Suppressing stims can lead to stress and tiredness, and potentially meltdowns or shutdowns.

A passion.

Neurodiversity and neurodivergence: a comic by Sonny Hallett.

Many of these terms and others are explored in far greater depth in the Stimpunks Glossary. See also Nick Walker's Neurodiversity: Some Basic Terms & Definitions.

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Neurodivergent Having a brain that differs significantly from the average (for example, autistic, dyslexic or ADHD). Neurotypical Having a more typical brain; belonging to the neurological majority. Compare allistic, which simply means 'not autistic'. Neurodiversity The diversity of human brains and minds. A group of people with diverse brains is neurodiverse.

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100+ inclusive books from Not an Autism Mom (not read all of them - worth looking though!)

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100+ inclusive books from Not an Autism Mom (not read all of them - worth looking though!)

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https://notanautismmom.com/2021/08/25/inclusive-childrens-books-on-autism-and-neurodiversity/?fbclid=IwAR1_Vt-wHLqp9eV6Jav0INPIc9_ReJ3tRZ1WcESXyNR1aQPfsLJUWNniMus_aem_AW4wytt8ciuDFt1fTebmkhufwqQ_LLqUGW3puoJwdmiaXVbqsWjZkVvPN1yBiI_Jovw

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Eating Disorders and Neurodivergence: A Stepped Care Approach
By Laurence Cobbaert and Anna Rose (nee: Millichamp) on behalf of Eating Disorders Neurodiversity Australia (EDNA)
Work commissioned by the National Eating Disorders Collaboration (NEDC)

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Eating Disorders and Neurodivergence: A Stepped Care Approach
By Laurence Cobbaert and Anna Rose (nee: Millichamp) on behalf of Eating Disorders Neurodiversity Australia (EDNA)
Work commissioned by the National Eating Disorders Collaboration (NEDC)

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https://nedc.com.au/assets/NEDC-Publications/Eating-Disorders-and-Neurodivergence-A-Stepped-Care-Approach.pdf

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What does Neurodiversity really imply for education? BPS article 

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What does Neurodiversity really imply for education? BPS article 

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I didn't enjoy a single part of school.

Everything was challenging - interacting, socialising, coping with the busy, noisy environment, dealing with unfairness and people breaking the rules and getting away with it (e.g. a student did not submit their homework on time and the teacher gave them another week to complete it with no detriment), trying to manage having different hobbies from everyone else, not relating to what other students were talking about.

No one suspected I might have autism. No one recognised how anxious I was. I think it was because I was so quiet that I was invisible. I never caused any problems to anyone. I went through the whole of secondary school never getting even one detention. I was polite and well-behaved and had no obvious difficulty with schoolwork so my difficulties were unnoticed.

(Alis Rowe, autistic woman and founder of The Curly Hair Project, from A Different Way to Learn, Neurodiversity and Self-directed Education)

I hear a lot of stories like Alis Rowe's in my clinical practice. Stories of young people who aren't thriving at school. It isn't necessarily that they find the academic demands of school too challenging (although that certainly is a factor for some). It's the non-academic elements of school which cause the most trouble. Being with peers all day. The chaotic and noisy playground. Paying attention to things which you're not interested in. The smells of the dining hall. Waiting in line and the way that adults talk to children.

Children express their distress about school in a range of ways. Some are disruptive at school, whilst others are quiet during the day and then become distressed after pick-up. Some complain of tummy aches in the mornings, whilst some refuse to go to school at all.

I have a particular interest in this client group because this was my story too.

The Brain or Blame dilemma

I was very unhappy at school when I was aged 5 and aged 13. Both times, I became reluctant to go. My parents managed this by changing my school. In a different environment, I was happier and more able to learn. I went on to excel at school and university.

I was lucky. For most children who are unhappy at school, it's unusual for the school environment to be considered the problem. Instead, we tend to locate the problem in the child themselves. The problem is seen as either 'behavioural' or 'emotional'. Children are incentivised with awards or punished for poor attendance. Sometimes they are sent to psychologists and offered treatments for anxiety. We treat their emotional reaction as the problem. If this doesn't work, their parents are fined and threatened with court orders.

The other way that the system copes with children who aren't thriving is to identify them as having 'special educational needs' - a term which essentially says that they are not well-suited to what mainstream school is offering. These children often go onto waiting lists to see health professionals. I've worked in one of these clinics. We assessed young people and we sent them back with a report, often a diagnosis, and a list of recommendations. We never knew whether those recommendations were helpful. The reports were sent to the school and the children were discharged from our service.

Professor Mary Boyle, emeritus professor of clinical psychology at the University of East London, calls this dichotomy the Brain or Blame dilemma. The Brain or Blame dilemma suggests that our society only offers a few explanations for those who struggle. We tend to either blame them (parents need to use Tough Love, children should try harder) or say that there's something wrong with their brain using the medical model (they have a 'mental disorder' or 'special educational needs'). After 'Blame', the medical model comes as a huge relief. It effectively says, 'It's not your fault. There's something wrong with your brain. You can't help it'.

It's not surprising that families are so desperate for this. A diagnosis can be the key to help and extra funding. It can mean that people around a child stop blaming them or their parents for their difficulties.

However, there's a downside. Both Brain and Blame locate the problem in the child and their family. This means that we don't have to ask ourselves difficult questions about why so many children are not thriving in the education system. We don't ask ourselves whether the education system is fit for purpose or whether it meets the developmental needs of children. When we locate the problem in individuals, we neutralise any pressure for systemic change. We assume that the problem isn't the system, it's the children.

Window dressing

This is a particularly salient dilemma for psychologists because we are often the ones who are being asked to legitimise the 'brain' side of this dilemma. We are being asked to say, yes, this isn't your fault. You have a diagnosable disorder. It's because there's something wrong with your brain.

The discomfort of many psychologists with this role can be seen in the move to replace the pathologising language of DSM and ICD. People will write reports with terms like 'autism spectrum condition' rather than 'autism spectrum disorder', even though the official diagnostic term is indeed 'disorder'. These changes in terminology make no difference to fundamental assumptions of the medical model, which is designed to identify disorder or disease so that the appropriate treatment can be chosen. They are essentially window-dressing.

Psychiatric diagnoses were not designed in order to describe or appreciate difference. Their purpose is to identify who might need treatment or an intervention.

Diagnoses are used to determine who should get extra help in school, and so it's not surprising that there's a massive pressure on neurodevelopmental services. Waiting times of several years for an NHS assessment are not uncommon. Private clinics are proliferating which offer quicker diagnoses, usually for a fee of several thousand pounds. A diagnosis can unlock extra financial support for their school and access to disability benefits, meaning that those who can pay for a diagnosis are then able to get more support more quickly than those who cannot. Many families see a diagnosis as their only hope.

In those circumstances, I know from experience that it is very hard to be the clinician who says no. There is a pressure to lean towards giving the diagnosis. When I worked in a neurodevelopmental service I would talk to senior colleagues about tricky decisions and they would say 'Do they want the diagnosis? Then give it to them.' I know from talking to other psychologists that this isn't uncommon.

Neurodiversity

I was concerned by my experience in the neurodevelopmental clinic. I felt that the health service was being used to de-politicise the problems in the education system. I felt that whilst we might achieve something for the individuals who got a diagnosis, we were leaving those who did not get a diagnosis without anything except blame. I knew from my experience that the difference between someone who received a diagnosis and someone who didn't could be as small as one criteria - and yet this distinction was being treated as if it was of the utmost importance in that person's life.

In my search for something different, I found neurodiversity. At its most basic level, neurodiversity (a term coined by Judy Singer in the 1990s) is the idea that humans are all different, and that this difference does not have to be seen as a disorder.

The basic idea of neurodiversity is at odds with the diagnostic model. It's fundamentally a dimensional, non-pathologising approach. It refers to differences between everyone.

However, the medical model is deeply rooted in our culture. There are aspects of it which are often taken for granted in general discourse - for example, that differences between people fall into distinct diagnostic categories, rather than being best understood as dimensional. The way that the public understands the term 'diagnosis' means that many assume that a diagnosis based on behavioural symptoms (like autism or ADHD) means that an underlying biological cause has been identified. These assumptions are pervasive in our culture, and so it's no surprise that when talking about neurodiversity, they show up.

It shows up in the way that people still get divided into categories and how it is assumed that these categories reflect a neurological difference. Rather than understanding neurodiversity as dimensional and something which refers to the whole population, the world is sometimes divided into the 'neurodivergent' (which refers to people who get a diagnosis or self-diagnose) and the 'neurotypical' (those who do not), with the assumption being that this division reflects distinct underlying neurological differences.

It's common to hear it said that people belong to different 'neurotypes', an idea which assumes that a category such as 'ADHD' or 'autism' defines a distinct type of brain. Parents are sometimes told their children need to form connections with their 'neurokin' - people who share their diagnosis. There is frequent talk in the press about those with a neurodevelopmental diagnosis being 'differently wired', (e.g. Williams, 2023) leading many of the public to assume that receiving a diagnosis means that professionals have reliably identified that they have a brain which works differently (and always will work differently) to other people.

In some ways, this can be more deterministic than the medical model. Receiving a diagnosis is sometimes presented as the only way a person can truly understand themselves. For many, those diagnoses have become an identity. For late-diagnosed adults, this identity is one they choose. For children, it is usually chosen for them.

There is no evidence that people can be divided into neurologically distinct groups based on psychiatric diagnosis and in fact, recent research is pointing us in a very different direction. Neuroscientists are finding that neurological differences in those with developmental differences are transdiagnostic (Kushki et al., 2019).

Behavioural geneticists are finding that genetic differences are a matter of many different genetic variations, all of which have a tiny effect and which are present through the whole population (Plomin, 2018). The days of thinking that there is a straightforward correspondence between genes, neurobiology and psychiatric diagnosis are behind us. These findings suggest that we will never be able to diagnose autism (or other types of neurodiversity) based on a brain scan, because the diagnostic category does not reliably map onto neurological differences.

Neurodevelopmental diagnoses are based on symptoms, and it is becoming clear that there can be different pathways to a similar set of symptoms. We know that the majority of psychological and behavioural differences between people are dimensional, rather than categorical. The frustration which scientists have felt with the limitations of diagnostic classification system have led to several new alternative dimensional frameworks being developed (Insel, 2014, Kotov et al., 2017).

There is also evidence that the term 'neurotypical' is a misnomer. As Schaefer et al. (2017) showed in their population-representative study cohort study in New Zealand, by midlife the large majority (83 per cent) had experienced at least one diagnosable 'mental disorder'. If we define the 'neurotypical' as those who never fit criteria for a 'disorder' then they are in the minority - and therefore not really 'typical' at all.

One size cannot fit all

To me, this means that we need to think far beyond diagnosis when seeking to understand neurodiversity. Developmental differences in areas such as executive functioning and emotional regulation mean that a standardised system may not work well for many children, whether they fit diagnostic criteria or not. It means that we need to think about how our education system could accommodate the whole range of developmental variation - and we need to acknowledge that this variation could be far wider than many of us appreciate.

It means we should be taking individual differences as our starting point. It's not enough to provide a standardised system and to either blame or pathologise children when it doesn't work for them. It's also not enough to take one group of children, give them a diagnosis and say that they (and only they) need something different, whilst assuming that the system works fine for everyone else. Neurodiversity is the norm, not the exception.

I think the only way in which more children could thrive would be to create a system which is far more flexible than it is at present. One size cannot fit all.

Looking for alternatives led me to self-directed education. Most people have never heard of self-directed education, but it's been practiced for decades by home educators and there are schools which run on these principles which have been open for over a century, for example, Summerhill School in Suffolk.

The idea behind self-directed education is a simple one. The learner retains responsibility for their learning. They are the one who chooses what to learn, how to learn it and when to stop. This is very different to school, where the teacher (or the government) decides what a child should learn, how and when they should learn it.

Even though you probably haven't heard of it, most of us do know about self-directed education. It's what we do with our young children. In a good nursery, adults set up an environment full of things which children like to do, and within that, the children can choose how they spend their time. Adults are available and involved, but they do not insist on the child following their agenda. Young children are self-directed learners.

Self-directed education continues the principles of a good early years setting upwards as children get older. The opportunities become more sophisticated, but the principles are the same. The child retains the right to choose what they do.

Self-directed learning is also how most adults learn. They find information online, they watch documentaries, they read books. They talk to other people. They stop when they have had enough. They set themselves extraordinary challenges, including writing books and running marathons. They rarely decide that they must go and sit in a classroom and listen for hours on end - and when they do, they often complain about how hard it is to concentrate.

Self-directed education is evidence-informed. It takes the principles of Ryan and Deci's self-determination theory and puts them into practice. Adults create the circumstances for intrinsic motivation so that children can drive their own learning.

For many things about the way that mainstream school is organised are not evidence-based. There is no evidence that between the ages of 5-18, humans learn in a different way to earlier and later life. There is no evidence that it's necessary to make young people all do the same thing or that they should be constantly compared against each other. There is evidence that for some children, the standardised school system causes distress and disability - which we (by which I mean psychologists and other professionals) are then legitimising by locating the problem in the children.

That is why I wrote a book about neurodiversity and self-directed education. I wanted to tell the stories of families who had taken a very different way with their children. They told me what self-directed education looked like in their homes. It looked very different to school.

To show you what I mean, I'll use an extract from the book. Malachi is five years old and is autistic with complex medical needs. His older brother Jacob, aged 10, is dyslexic. They are both self-directed learners and do not attend school. This story was told to me by their mother.

Malachi} has things that he's really passionately interested about for a period of time and then that's kind of out the window. Then he doesn't really know what to do with himself for a while and he sort of wanders around. He likes being with me. He likes asking lots of questions, and just sort of pottering around. He likes going on trains and bus rides. He likes to sit in a coffee shop. He likes things like shelling eggs and he really loves kneading dough. Then there's other things that he just really isn't interested in that you would assume he might be interested in, like watching TV shows.

He is quite sensory-seeking in a lot of ways but then he's avoidant in other ways. We thought about Forest School for a while and the idea of being outside and doing fires. We'd agreed that I would stay with him. He tried it for a little while. I think we had been three times and he said, 'I've done it now.' I said, 'You know, the idea is that you keep going.' And he's like, 'No, no, but I've done it. I've been there. I've seen the place. It's done. I know what's gonna happen.' So he doesn't do that anymore.

He loves playing with Jacob and they play together a lot: video games, or they make up games. Jacob frames the whole game, even down to when he'll say, 'And now you say this'. And then Malachi will say it. Jacob scaffolds the whole play for him and Malachi really loves that. But if you just say to Malachi, 'Do you want to just play?' Or, 'What do you want to play?' He'll say, 'I don't know. I just don't know.' But when Jacob is scaffolding things for him, then he'll say, 'Oh, yeah, I could say this.' And I can see that he comes out of himself a lot more than within that frame that Jacob has created for him.

Malachi's education is very different to school. There's no mention of phonics or of his ability to follow instructions. Instead, his mother is providing him with opportunities - like forest school - but his choices are respected, even when they are video games.

It can be hard to believe that this form of education works, but in fact, there is research which shows that children educated in this way can and do go on to higher education (Riley, 2021). Many of the families in my book told me how as their children became teenagers, they started to set themselves goals and work towards them in a way which had seemed impossible when they were younger. There was a qualitative shift in their learning which became more mature.

Self-directed education is on the increase, particularly in families of children who struggle in the school system. It provides an alternative to the 'brain or blame' dilemma which families often find themselves caught in. It allows families to start where their child is, even if that place is very different to other children of their age.

I'll finish with a quote from Alice, whose autistic son is 15 and doesn't go to school. She talks here about how her son, who spent many years playing video games, has started to engage with new experiences.

Over this past year, it's been like moving out into the world, slowly moving out into the wild. To see that person functioning in that way is phenomenal. Part of the reason he can is because he knows he has choices. He can come to me tomorrow and say, 'I'm not doing carpentry anymore' and I'll say, 'That's great'. Everything he does is a free choice.

What we've given him is autonomy, which is what he has to have. If he doesn't, he's out of control. He's learning to live with his autonomy. And I think sometimes it is too much for him. There's too much to choose, he gets overwhelmed by who he'll be in the future and where he will go. And that's when it's just time for a big hug and to let him know that you know it's all okay.

Dr Naomi Fisher is an Independent Clinical Psychologist, author and EMDR-Europe trainer specialising in trauma, autism and alternative approaches to education. Her two books, Changing Our Minds and A Different Way to Learn, focus on the psychology of self-directed education.

Key sources

Caspi, A., Houts, R.M., Belsky, D.W. et al. (2014). The p Factor: One General Psychopathology Factor in the Structure of Psychiatric Disorders? Clin Psychol Sci. Mar;2(2):119-137.
Fisher, N. (2023). A Different Way to Learn: Neurodiversity and Self Directed Education. Jessica Kingsley Publishers.
Insel, T.R. (2014). The NIMH Research Domain Criteria (RDoC) Project: Precision Medicine for Psychiatry. American Journal of Psychiatry 171, 395-397.
Kushki, A., Anagnostou, E. et al. (2019). Examining overlap and homogeneity in ASD, ADHD, and OCD. Translational Psychiatry Vol. 9 Issue 1 Pages 318
Kotov, R., Krueger, R. F., Watson, D., et al. (2017). The Hierarchical Taxonomy of Psychopathology (HiTOP). Journal of Abnormal Psychology, 126(4), 454-477.
Pink, D. (2010). Drive: The surprising truth about what motivates us. Canongate books.
Plomin, R. (2018). Blueprint: How DNA makes us who we are. Allen Lane.
Riley, G. (2021). Unschooling: Exploring Learning Outside the Classroom. Palgrave MacMillan.
Schaefer, J.D., Caspi, A., Belsky D.W., et al. (2016). Enduring mental health: Prevalence and prediction. J Abnorm Psychol. 2017 Feb;126(2):212-224.
Shalaby, C. (2017). Troublemakers: Lessons in Freedom from Children at School. The New Press.
Williams, R. (2023). Wired Differently. The Guardian, August 23rd.

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What does neurodiversity really imply for education? | BPS

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I didn't enjoy a single part of school. Everything was challenging - interacting, socialising, coping with the busy, noisy environment, dealing with unfairness and people breaking the rules and getting away with it (e.g.