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Autism news and resources: from autistic people, professionals, and parents

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We are committed to children and families with the greatest need due to disability or special health/mental health needs; poverty; discrimination based on race/ethnicity, gender, gender identity, sexual orientation, language, immigrant or homeless status; involvement in the child welfare or juvenile justice systems; geographic location; or other special circumstances. SPAN's individual assistance, workshops, and resources are available in languages other than English. Learn more about us.

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Empowered Parents: Educated, Engaged, Effective!

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Autism Explained Archives - Hello Michelle Swan

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Insights into autism, neurodiversity, and living well

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What You Are Hiding Could Be Hurting You: Autistic Masking in Relation to Mental Health, Interpersonal Trauma, Authenticity, and Self-Esteem

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What You Are Hiding Could Be Hurting You: Autistic Masking in Relation to Mental Health, Interpersonal Trauma, Authenticity, and Self-Esteem

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What You Are Hiding Could Be Hurting You: Autistic Masking in Relation to Mental Health, Interpersonal Trauma, Authenticity, and Self-Esteem - Joshua A. Evans, Elizabeth J. Krumrei-Mancuso, Steven V. Rouse, 2024

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Background: Autistic masking refers to some autistic individuals’ tendency to hide, suppress, or camouflage their autistic traits, autistic identity, or au…

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Welcome to the Autistic Community​, free book for autistic people who want to learn what being autistic means. (pdf or browser)

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Welcome to the Autistic Community​, free book for autistic people who want to learn what being autistic means. (pdf or browser)

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Outside of the book, this website has lots of other resources about autism. They might have more detail about certain topics we couldn't get to in our book. You can look at those resources by clicking here. We also have information just for allies of autistic people.

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From being a trusted source of reliable information and data, to creating evidence-based resources and delivering high quality professional development or technical assistance, OCALI is positively impacting the lives of people with disabilities across the globe.

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From being a trusted source of reliable information and data, to creating evidence-based resources and delivering high quality professional development or technical assistance, OCALI is positively impacting the lives of people with disabilities across the globe.

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Autism Certification Center

ASD Strategies in Action

ASD Strategies in Action offers an innovative approach to online training in evidence-based strategies. Courses provide instruction through videos filmed with educators, service providers, experts, families, and people with ASD in the natural settings of school, home, work, and the community. An introductory course presents the common characteristics of autism and simple strategies. The courses that follow take participants to the next level of understanding with the opportunity to focus on strategies for Toddler and Preschool Age, School Age, or Transition Age individuals.

Autism Internet Modules

Autism Internet Modules (AIM) provide high-quality information and professional development for anyone who supports, instructs, works with, or lives with someone with autism. Developed with partners from across the country, participants can select from over 50 modules to complete at their own time and pace.

Assistive Technology Internet Modules

Assistive Technology Internet Modules (ATIM) is an online learning environment containing 50 AT topics from assessment and funding to content areas such as access to mobile devices, communication, seating and positioning, AT for students with complex needs and more. Developed with partnering universities and nationally renowned experts in the field, ATIM brings you the highest quality content available. Free access as well as professional development certificates and graduate credit are available.

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ohio center for autism and low incidence

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Ohio Center for Autism and Low Incidence

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ASD Strategies in Action offers an innovative approach to online training in evidence-based strategies. Courses provide instruction through videos filmed with educators, service providers, experts, families, and people with ASD in the natural settings of school, home, work, and the community. An introductory course presents the common characteristics of autism and simple strategies.

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Advice from an Autistic Student: College Roommates

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Justin Robbins’s blog about living with a roommate in college and being autistic has tons of great advice and perspective--bring on that roommate survey!

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Autistic Adults - Autism & Grief Project

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Shared via Adobe Acrobat. Get the app to edit, sign, and share PDF files: https://adobeacrobat.app.link/getApp

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The Speech Dude on IG

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Chris Wenger - Neurodivergent Speech Therapist on Instagram: "Ever had a student toss a glue stick across the room during class? Or knock over a board game mid-therapy session?

It might look like defiance or attention-seeking. It’s a clutch move to consider if it could be, anxiety or sensory overload, or executive functioning overwhelm, a stress response in disguise, or a nervous system saying, “I can’t do this shit right now”?

When we only respond to the behavior, we might miss the message underneath it….so, get curious before getting corrective. That’s where support begins! 

Has this worked for you? Share below. 

#autism #autistic #slpsofinstagram #speechtherapy #regulation #sensoryprocessing"

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13K likes, 397 comments - speechdude on June 24, 2025: "Ever had a student toss a glue stick across the room during class? Or knock over a board game mid-therapy session?

It might look like defiance or attention-seeking. It’s a clutch move to consider if it could be, anxiety or sensory overload, or executive functioning overwhelm, a stress response in disguise, or a nervous system saying, “I can’t do this shit right now”?

When we only respond to the behavior, we might miss the message underneath it….so, get curious before getting corrective. That’s where support begins! 

Has this worked for you? Share below. 

#autism #autistic #slpsofinstagram #speechtherapy #regulation #sensoryprocessing". 

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View this post on Instagram

A post shared by Chris Wenger - Neurodivergent Speech Therapist (@speechdude)

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Netflix’s Love On The Spectrum Autistic Therapist & Advocate Speaker https://linktr.ee/kaelynn_vp

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Ascent was started in San Francisco, CA by a group of behavior analysts, professors, and technologists in order to provide safe and conducive spaces for individuals withs autism to practice their social skills.

Individuals with autism have unique life experiences that can make it challenging to connect with members of their local communities. Ascent provides safe spaces for peers to develop their social skills and grow socially and emotionally. The growth that peers experience in their Ascent peer groups will help them better connect with their local community members.

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Ascent Autism | Online Peer Groups | Help Your Child Socialize

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Online peer groups designed for kids with autism to practice their social skills and build friendships. Schedule a kickoff call today!

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Why schools don't always fit autistic kids — and how to make them better : The Pulse : NPR

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Why schools don't always fit autistic kids — and how to make them better : The Pulse : NPR

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What's the best educational setting for my child to learn and grow? It's a question many parents contemplate, but it's an especially difficult question for parents of autistic kids. We explore the often unseen challenges these kids face at school, the battles parents face advocating for change, and what experts say could actually make a difference.

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What's the best educational setting for my child to learn and grow? It's a question many parents contemplate, but it's an especially difficult question for parents of autistic kids. We explore the often unseen challenges these kids face at school, the battles parents face advocating for change, and what experts say could actually make a difference.

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For Parents of Newly Diagnosed Autistic Kids

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For Parents of Newly Diagnosed Autistic Kids

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ASAN

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Too often, when parents find out their kid is autistic, they receive negative messages from all sides. Many resources available to parents stigmatize autism and talk about it as something to be "overcome," not as a part of who an autistic child is. At ASAN, we've heard from many parents of autisic children who wish they'd had a better resource to learn about autism - one that cuts through myths and misconceptions and explains autism from an autistic perspective. And we've heard from many of our autistic community members who wish their families had access to that kind of information when they were growing up. That's what our new booklet, "Start Here: A Guide for Parents of Autistic Kids" is for!

This booklet was created with the Autistic Women and Nonbinary Network, the Thinking Person's Guide to Autism, and Little Lobbyists. You can purchase a print or ebook copy, or get it for free.

This booklet will explain:

What is autism?

What parents should do next

Where parents can learn more

What good services look like

Topics such as self-advocacy, communication, and presuming competence

We hope you'll check out this toolkit and share it widely! When you learn your kid is autistic, you're also learning that they're part of a larger community of autistic people. Your kid has a lot of people on their team, so we wanted to give you a chance to learn from their community.
This toolkit was made thanks to the generous support of Anthem.

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Start Here: a guide for parents of autistic kids

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Too often, when parents find out their kid is autistic, they receive negative messages from all sides. Many resources available to parents stigmatize autism and talk about it as something to be "overcome," not as a part of who an autistic child is.

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It started with a broken crayon.

This wasn't just any crayon (apparently), but a Crayola that was the exact color my daughter needed for a small section of the picture she was coloring. I tried to explain that the half-crayon was still perfectly good to use, even though it was broken, but she was not able to hear this. She was sure there was another fully-intact crayon of that exact same color somewhere in the house. She frantically overturned other bins of crayons and markers, spilling them on to the floor. When she couldn't find it there, she went into her brother's room, sure she had seen this exact color in his room. I tried to explain to her that her 13-year-old brother no longer has crayons in his room, that he hasn't used crayons for his artwork in years. But she could not be deterred.

She was stuck in her perseveration .

Perseveration: persistence in doing something to an exceptional level or beyond an appropriate point, often associated with damage to the frontal lobe of the brain. It is an inability to interrupt a task or shift from one strategy or procedure to another. In speech and language, it is the abnormal or inappropriate repetition of a sound, word or phrase .

When we can view perseveration as a symptom, it can diminish our reactivity to it.

Perseveration is a common behavioral symptom in kids (and adults) who have brain-based differences, and it can be confusing, exhausting and frustrating for the parents supporting them. However, when we can view perseveration as a symptom, it can diminish our reactivity to it, facilitating a "think brain first" approach and leading to accommodations that can assist our child in gently transitioning out of the perseveration loop.

So how does perseveration show up, exactly? What do those behaviors look like?

When we look at these behaviors and see them as symptoms of our child's brain-based disability (versus intentional behavior, such as "they are selfish and always need it their way" or "they never listen when I tell them to stop" or "they don't care about anyone but themselves"), we can slow down our human reaction and think brain first . When we can create that space between the behavior and our knee-jerk reaction, we then have the opportunity to think clearly enough to develop accommodations that help our child settle and, as time goes on, experience more flexibility and less perseveration.

Here are a few ideas for accommodations that can help our child get unstuck from their perseveration:

Not engaging in power struggles . When we understand that because our child's frontal lobe works differently, that they are cognitively stuck and not willfully defying us, it diminishes our desire to "win" or power our way through a situation. We begin to recognize that our child only gets more stuck and escalated when we do this. When we disengage from the power struggle, we are on the path to helping them with this distressing symptom.

Adjusting expectations when we see they are perseverating. In the example I shared at the beginning of this post, about my daughter and the crayon, adjusting our expectations was an accommodation we had to make in the moment, knowing it was what she needed to be able to move on with her morning and have a successful day (versus having the crayon breakage throw off the entire day). We had to put aside our timelines, support her in what was a distressing event for her, and work to find some satisfying resolution, instead of using our authority, power and control to insist she do what we felt took priority. Remember: if they could do better, they would.

The most important thing to remember is that your child doesn't want to be stuck in this loop - it's actually deeply distressing. If you're able to employ one or more of the strategies above, it might be just the thing to break the cycle and provide the necessary off-ramp from perseveration.

Interested in learning more about how your child's unique brain works differently and what this means in terms of helping them experience fewer challenging behaviors? You can visit eileendevine.com to learn about the Brain First Parenting program and The Resilience Room membership community .

Eileen Devine works in Portland, OR as a therapist and coach supporting parents of children with special needs. She is also a consultant for families impacted by FASD, PANS/PANDAS and other neurobehavioral conditions through her private practice, working with families nationally and internationally. She lives with her husband and two amazing kids, one of whom happens to live with FASD. For more information, visit eileendevine.com.

It started with a broken crayon.

This wasn't just any crayon (apparently), but a Crayola that was the exact color my daughter needed for a small section of the picture she was coloring. I tried to explain that the half-crayon was still perfectly good to use, even though it was broken, but she was not able to hear this. She was sure there was another fully-intact crayon of that exact same color somewhere in the house. She frantically overturned other bins of crayons and markers, spilling them on to the floor. When she couldn't find it there, she went into her brother's room, sure she had seen this exact color in his room. I tried to explain to her that her 13-year-old brother no longer has crayons in his room, that he hasn't used crayons for his artwork in years. But she could not be deterred.

She was stuck in her perseveration .

Perseveration: persistence in doing something to an exceptional level or beyond an appropriate point, often associated with damage to the frontal lobe of the brain. It is an inability to interrupt a task or shift from one strategy or procedure to another. In speech and language, it is the abnormal or inappropriate repetition of a sound, word or phrase .

When we can view perseveration as a symptom, it can diminish our reactivity to it.

Perseveration is a common behavioral symptom in kids (and adults) who have brain-based differences, and it can be confusing, exhausting and frustrating for the parents supporting them. However, when we can view perseveration as a symptom, it can diminish our reactivity to it, facilitating a "think brain first" approach and leading to accommodations that can assist our child in gently transitioning out of the perseveration loop.

So how does perseveration show up, exactly? What do those behaviors look like?

When we look at these behaviors and see them as symptoms of our child's brain-based disability (versus intentional behavior, such as "they are selfish and always need it their way" or "they never listen when I tell them to stop" or "they don't care about anyone but themselves"), we can slow down our human reaction and think brain first . When we can create that space between the behavior and our knee-jerk reaction, we then have the opportunity to think clearly enough to develop accommodations that help our child settle and, as time goes on, experience more flexibility and less perseveration.

Here are a few ideas for accommodations that can help our child get unstuck from their perseveration:

Not engaging in power struggles . When we understand that because our child's frontal lobe works differently, that they are cognitively stuck and not willfully defying us, it diminishes our desire to "win" or power our way through a situation. We begin to recognize that our child only gets more stuck and escalated when we do this. When we disengage from the power struggle, we are on the path to helping them with this distressing symptom.

Adjusting expectations when we see they are perseverating. In the example I shared at the beginning of this post, about my daughter and the crayon, adjusting our expectations was an accommodation we had to make in the moment, knowing it was what she needed to be able to move on with her morning and have a successful day (versus having the crayon breakage throw off the entire day). We had to put aside our timelines, support her in what was a distressing event for her, and work to find some satisfying resolution, instead of using our authority, power and control to insist she do what we felt took priority. Remember: if they could do better, they would.

The most important thing to remember is that your child doesn't want to be stuck in this loop - it's actually deeply distressing. If you're able to employ one or more of the strategies above, it might be just the thing to break the cycle and provide the necessary off-ramp from perseveration.

Interested in learning more about how your child's unique brain works differently and what this means in terms of helping them experience fewer challenging behaviors? You can visit eileendevine.com to learn about the Brain First Parenting program and The Resilience Room membership community .

Eileen Devine works in Portland, OR as a therapist and coach supporting parents of children with special needs. She is also a consultant for families impacted by FASD, PANS/PANDAS and other neurobehavioral conditions through her private practice, working with families nationally and internationally. She lives with her husband and two amazing kids, one of whom happens to live with FASD. For more information, visit eileendevine.com.

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Getting Unstuck: 4 Ways to Help Your Child Break the Perseveration Loop

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Accommodations that parents of children with brain-based differences can use to assist their child in breaking free from cycles of perseveration.

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Project SEARCH internships at Jefferson Health

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Project SEARCH internships at Jefferson Health

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By Sia Spark & Melanie Heyworth
For many of us, our journey with Autism (whether as parents, partners, friends, or allies of Autistic people) might prompt us to consider if we are Autistic too. If you have had moments of wondering if you, too, are Autistic, this article is for you.

As we explore Autism, many of us begin to resonate with elements of the Autistic experience. We might begin to reassess our past through a lens of curiosity, seeing if Autism might explain or help us to understand our experiences. We might begin to question what we always held as "normal". It might always have been your "normal" to develop a migraine at bright lights or strong smells, or to have deep, intense, all-consuming passions, or to struggle with large group socialising, or to feel a sense of great safety in having a consistent routine and expectations.

But when we begin to understand these as "Autistic normal" not necessarily "non-autistic normal", we might question our own identity.

For many of us, we have also felt that we couldn't be "Autistic enough" to be "really Autistic", or perhaps we think our success (in work, relationships, or education) preclude us from being Autistic.

There may be some elements of our experience which don't seem reflected in the experiences of the Autistic people we know and read about. Or maybe we've just learnt to mask (or bury our organic Autistic selves) so deeply that we're not sure who we are or what our we might be like in different circumstances.

These are all persistent thoughts that may stop us from seeking diagnosis or exploring our Autistic identity further.

There are many reasons which might prompt us to query our identity. There are equally as many that undermine our efforts to find clarity around our identity.

Having questions about whether you're Autistic or not doesn't mean that you're not Autistic! It might mean that...

The signs and characteristics aren't obvious to the people around you - this might be because they are unaware of your experiences on a deeper level, or because they are neurodivergent themselves, so your traits seem commonplace and "normal" to them.

You've been misdiagnosed in the past with something that seemed to explain your challenges at that time (e.g., bipolar).

You have another diagnosis or diagnoses (e.g., ADHD, anxiety) that overlap with Autism in some way, so your Autistic identity has been missed or ignored.

You've learnt over your life to manage your Autistic needs yourself (or you have people in your life who have instinctively helped you to do so), so that your support needs haven't been unmet.

You've learned coping or "masking" strategies that have meant that you've "buried" or suppressed your Autistic self and learnt to "pass" as neurotypical.

Any or all of these things might be characteristic of your experience, and so your exploration of your identity needs to be shaped by these considerations too.
Even for those of us who feel strongly - who know! - that we are Autistic, formal diagnosis is a privilege and is not accessible to many of us. This might be because:

The financial and emotional cost of assessment is too high, or we have experienced other prohibitive factors to obtaining a diagnosis (e.g., medical trauma),

We do not have access to knowledgeable, informed, and respectful diagnosticians,

Our gender, race, culture, or other diangoses problematise our access to diagnosis and our presentation of Autism, or

We simply don't feel that we need a formal diagnosis - our own clarity is enough!

There are many Autistic adults who are not formally diagnosed, and self-identifying as Autistic is as valid as having a "piece of paper" from a professional confirming that self-identification.

Finding clarity about your identity is a journey, and for some that journey is much longer than others. Exploring your identity with other late-identified Autistic people might be very enlightening for some, while others will prefer to be supported by a professional (whether or not they pursue formal diagnosis ultimately). Others again will want to internalise this journey by considering and weighing up their past with a possible Autistic lens by themselves, over time. For some, the epiphany will be so blinding and obvious that the knowledge of our Autistic identity will be quick and emphatic.

Whatever your journey, whatever your way, your journey of self-examination is an important way to find clarity about your identity. And that's definitely a worthwhile pursuit.

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Questioning Your Neurotype as an Adult: A Journey to Clarity - Reframing Autism

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For many of us, our journey with Autism (whether as parents, partners, friends, or allies of Autistic people) might prompt us to consider if we are Autistic too. If you have had moments of wondering if you, too, are Autistic, this article is for you.

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Also,

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Common issues that cause autistic distress, and might be ignored, “treated,” and/or cause a meltdown

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Autistic Science Person, Shannon Des Roches Rosa

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Our autism checklist of doom is meant to help people the kinds of things that may upset an autistic person, ones that aren’t always obvious.

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In the article, Microsoft Wants Autistic Coders. Can It Find Them And Keep Them?" Vauhini Vara reported:

" . . . millions of adults with autism often find themselves in a difficult bind. They struggle to get and keep jobs because of the disability, but if they disclose it so they can seek accommodations while applying or working-just as someone in a wheelchair, for instance, might request a ramp-they risk facing discrimination from managers or colleagues who mistakenly believe autism, because it affects the brain, must make them less able workers."

The Virginia Commonwealth University website states: disclosing "may be a major cause of anxiety or concern for people with disabilities as well as those who assist them when looking for a job."
It's important to understand the sensitive subject matter of disclosure.
In a recent phone conversation I had with Adam Glass, the Career Path Coordinator at The Autism Initiative at Mercyhurst (AIM), Glass noted that some students state something along these lines:
I don't want to be treated differently. I don't want to be associated with autism . . . I don't want to be seen for my weakness.
Despite the college students' justifiable trepidation, as part of the AIM program at Mercyhurst University, Glass encourages the students to disclose their disability. He explains they don't have to necessarily disclose autism upfront but can choose to disclose a symptomology disclosure. In other words, to disclose a coexisting condition such as sensory integration challenges or a subset of a condition such as over sensitivity to specific uniform fabrics. Glass takes time throughout the year to explain what disclosing a diagnosis of autism can and cannot do, and poses all options, including what happens if you do and what happens if you don't. He asks each pupil to choose what feels right for you and advices to follow your dreams not stay in a bubble. He informs students of their legal rights and advices if you don't disclose, you won't know what options and accommodations you might have access to. He helps students to interpret the law and to understand their employment rights. When Glass and his colleagues travel to meet with employers, who have autism hiring initiatives, they bring some of their students along. And quite often, meeting face-to-face, the potential employees ask the autistic students, "What do you need from us?"

What Glass is doing is inspiring, and something that ought to be implemented on high school campuses and college campuses nationwide. His primary goal is to empower and encourage. And part of this goal is achieved through teaching the basics of disclosing. He teaches autism is an integrate part of you, but it's never you. He emphasizes the divide between individuals who push onward and those that don't. What I would call resilience. And what autistics can offer that others cannot.
When an individual is considering whether or not to disclose a diagnosis of autism several factors come into play:
· How self-confident and knowledgeable about autism is the individual?

· Does the individual have a mentor or support person?

· Is the individual aware of disability rights?

· Is the individual able to ask for reasonable accommodations, if needed?

· Is the individual resilient and able to face probable stereotyping, assumptions, and misinterpretations?

· Is the individual self-empowered?

Before setting any person, whether young or old, on the path of disclosing in the workplace, we must be realistic. Most autistics, after disclosing on the job, face some form of discrimination, myself included. Take for example what an audiologist from the UK wrote:

"If I choose to disclose my AS (Aspergers) at work, management is initially understanding but then put me in difficult environments due to my experience and end up refusing to make any environmental or procedural adaptations for me. This leads to increased absence, anxiety, rigid thinking, inflexibility and ultimately meltdown (which occurs outside of the workplace, negatively affecting friends, family and romantic relationships). I usually resign before I meltdown at work. I am concerned that I will become unemployable, if I develop a reputation for unreliability in such a small industry . . . We don't ask for 'special' treatment. We ask for certain conditions to allow us to function at the same level as the rest of the workforce. Once these conditions are met, you will find you have the hardest working, most loyal employees around."

A day trader with Asperger's Syndrome had this to say, "I don't know what's worse, being judged because no one knows you have autism or knowing that if you tell people you have autism that action alone is going to come off as extremely strange. In theory, I won't only be judged for my autism, but for the mere action of disclosing."

A 30-year old autistic man, who wished to remain anonymous, wrote:

"I deeply regret sharing my diagnosis. My coworker thought Aspergers was an extremely awful disability that makes people uncomfortable. He had no reference point. And nothing was ever the same again. It resulted in the end of our working relationship. If I was ever to go into another job, the last thing I would ever do is tell them I was autistic . . . because they are just going to misinterpret it. I mean it's a deal breaker for all NTs (neurotypical/non-autistic); they are never going to look at you the same. It's not that I am afraid of what they think. I just know that once I tell them that it can never be undone. That's not just in the workplace. It's with doctors, family members, even my own parents . . ."

That's the thing about an invisible condition: sometimes we have a choice of whether or not we want others to know. And for good reason, some of us choose not to disclose at all. There is still a lot of misinformation out there surrounding the autism spectrum condition, still a high likelihood of facing the wallop of discrimination, once an autism diagnosis is mentioned. Ironically, today's business and university leaders often denote autism with an aura of less than, using the words 'they' and 'help them,' and implying, and even stating, workers on the autism spectrum are incapable of leadership and management-even as large numbers of autistics are the very ones entrusted to educate our children as teaching assistants, general education and special education teachers, and college professors. Furthermore, some of us 'with autism' are in highly influential positions, serving as civil servants, defense lawyers, oncology doctors, and pediatric nurses. Whether we publicly admit our autism/Aspergers or not, we are out there in much larger numbers than currently reported. And it's common knowledge that Silicon Valley and Bellevue, WA hubs, and other technology city centers, are overtaken by professionals with autistic attributes and traits-but maybe by another name-gifted, geek, nerd, genius.

To this day, five years after my diagnosis of Asperger's Syndrome, I ponder the pros and cons of being out of the "autistic closet." In considering whether someone should disclose they are on the autism spectrum, a marching band of pros and cons arise. Anyone who is autistic can easily venture into the feasible benefits and risks of disclosing on the job. We all know, and some have lived at some level, the risk of backlash from supervisors and co-workers. And some of us are fortunate enough to know the benefits of an inclusive and accepting work environment.
There isn't a right or wrong answer to disclosing autism or Aspergers on the job. Still there is a potential threat-it's always there. And there are ramifications, regardless of any precautionary measures taken.
In reality, autism is a baby in the realm of marginalized minorities. Swarming is false, outdated, and unsubstantiated information about autism spectrum disorders. Beginning to fly, queries of whether or not autism is even a disorder. And false information certainly abounds. When paid professionals in the field of psychology are mistaking sustained eye contact, empathy, imagination, and ability to make friends as markers against feasibly having autism, how can we expect that the average non-autistic will get it? When "sensitivity" trainings and conventions about autism are saturated by educators and presenters who are non-autistics, how are we heard? And how many immediately box us into constricting conclusions of less than, needs special treatment, fragile, or a charity case? How many think us to be like the one autistic they already know or have heard about?
How many of us lose who we are and become something we are not, in the eyes of another, with the mention of autism?
"Disclosure provides opportunities to educate and inform other people about autism, and to advocate on behalf of those within our community who may not be in as good a position to do so for themselves," stated Maura Campbell, a senior manager in the Northern Ireland Civil Service, and former board member of Specialisterne. "It allows you to challenge head-on the myths and misconceptions that abound about autism, partly due to its stereotypical portrayal in the media and popular culture. When people express surprise that I have Asperger's (which is generally the case), I have an opening to correct some of the inaccurate impressions they may have about autism . . . " But she is also a realist. "When I 'came out', I was asked a couple of times what treatment I was receiving. No matter how hard I tried to tell people that the diagnosis was a positive event, a confirmation of who I already was, they behaved as though I was conveying bad news. What I learned from this was that people do not always receive information in the same way as you present it to them. They often apply their own filters, overlaying what you have said with their own preconceptions and assumptions." (source: Spectrum Women Magazine)

It is true disclosure during the hiring process or on the job can unintentionally lead to unfavorable consequences. Particularly, if a place of employment is not neurodiverse friendly or is not well educated in autistic culture, history, traits, and attributes. Whether or not to disclose is very much a personal choice.
Alternatives to not disclosing autism at a place of work:

State subtle needs

Work to blend in

Establish a support network outside of work

Find a trusted coworker to help interpret unspoken rules and workplace culture

Reevaluate disclosing at a later point

Establish own accommodations

Practice self-care on the job

As a general rule, when weighing the pros and cons of job place disclosing, for either yourself or someone you know, keep in mind that the act of disclosing has the potential to lead to direct opportunities for employment success.
When an employee discloses on the job:

Employers have opportunity to consider workplace adjustments and supports (reasonable accommodations, peer mentors, the establishment of a disability resource group).

Job candidate can ask for reasonable accommodation during the job screening process (list of topics that will be asked during interview, an interview over the phone, an overview of the hiring practice, an alternative to resume, a portfolio or video that showcases skills)

Springboard for other possible work opportunities within the company (customized job description, creating a new job role, being a neurodiversity trainer or peer-support person)

Opportunity to present past workplace supports and how the employee previously excelled

Working with a vocational counselor or other employment specialist to establish support measures

Protected under ADA

Platform to state needs and educate about disability or condition

Transparency

Lead to policy change and open new doors for others

Avoid the possibility of an employer feeling mislead or misinformed

Yes, there are multiple ways that the act of disclosing a diagnosis of autism or Asperger's Syndrome can assist a job seeker or an employee. I would definitely recommend disclosing at work (on my good days). Even so, as previously mentioned, the idea is very subjective and dependent upon multiple variables, including the workplace culture, one's ability to state workplace needs and to stick up for one's self, the individual's own understanding of autism, and whether or not there is a support person available.

When in doubt about workplace disclosure, I suggest that those on the autism spectrum ask other autistics that have been in the same situation, research into the pros and cons, and make a personal decision that best fits the individual.

Founder & President of Spectrum Suite,Marcelle Ciampi (aka Samantha Craft) M.Ed. is the lead job recruiter for ULTRA Testing, an autism educator, the author of the blog and book Everyday Aspergers, Selection Committee Chair at the ANCA World Autism Festival and active in autism groups locally and globally. She serves as a guest speaker, workshop presenter, and neurodiversity recruitment specialist.

This disclosure article is an excerpt from Ciampi's manuscript, Autism in a Briefcase, written to provide insight to employers and agencies about the neurodiverse talent pool. A former schoolteacher and advocate for children with special needs, she appreciates the skills and talents of autistics. You can reach her on LinkedIn, Twitter, and at info@myspectrumsuite.com

Copyright protected. All rights reserved.

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Disclosing Autism on the Job? Yes or No?

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In the article, Microsoft Wants Autistic Coders. Can It Find Them And Keep Them?" Vauhini Vara reported: " .

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Instead of ignoring and rewarding, try supporting and teaching

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Instead of ignoring and rewarding, try supporting and teaching

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Rather than using planned ignoring, using reinforcers, or giving consequences, next time you encounter a challenging behavior try supportive listening, creating opportunities for calming, and teaching new skills.

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Rethinking Planned Ignoring for Autitic Kids - Learn Play Thrive

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Rethinking Planned Ignoring for Autistic Kids If you work with autistic children, you're always looking for effective strategies to help your clients meet their goals. When challenging behaviors get in the way, many therapists decide that a behavioral approach is the way to go. They may choose to ignore their clients' challenging behaviors, praise or [...]

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This book is about what it means to be a part of the autistic community. Autistic people wrote this book. Some autistic people are just learning about their autism. We wanted to welcome them and give them a lot of important information all in one place.

This book talks about what autism is and how it affects our lives. It talks about our history, our community, and our rights. We wrote this book in plain language so that more people can understand it.

We wrote this book for autistic people, but anyone can read it. If you are not autistic, this book can help you support autistic people you know. If you are wondering whether you might be autistic, this book can help you learn more. If you are autistic, think you might be autistic, or if you want to better understand autistic people, this book is for you.
Welcome to the autistic community!

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Standalone book in the Nonfiction genre. Available from Amazon, Amazon Kindle, Barnes and Noble, Books A Million, Indie Bound. This book is about what it means to be a part of the autistic community. Autistic people wrote this book. Some autistic people are j...

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Children share their unique experiences in their own words

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Children share their unique experiences in their own words

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Amazing Kids - Autistic Spectrum Condition

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Pda | Tiggertraining/bridging The Neurodivide | England

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Pathological Demand Avoidance, (PDA), if you want to know more, have a look here.

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Sustainable Deliverables of the New NJACE

Principal Investigator & Scientific Director Goals

Multilayered Centralized Data Science Repository

Build synergies with industry, biopharma and research

Bring innovative technologies to ASD

Stimulate innovative research

Lower barriers for reporting

Stimulate communication between researchers, clinicians and consumers

Build online curricula for parents and clinical professionals

Build undergrad, grad and professional curricula to improve care for people with ASD

Statewide training for healthcare professionals and pre-professionals to improve care

Dear NJACE Website Users, we try to make our website as accessible as possible for everyone, including anyone with special needs. If you have any difficulties accessing our website, please reach out to hnorris@childrens-specialized.org for further assistance. This will help us improve the website for future users. Thank you and we apologize for any inconvenience.

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Sustainable Deliverables of the New NJACE Principal Investigator & Scientific Director Goals Multilayered Centralized Data Science Repository Build synergies with industry, biopharma and research Bring innovative technologies to ASD Stimulate innovative research Lower barriers for reporting Stimulate communication between researchers, clinicians and consumers Build online curricula for parents and clinical professionals Build undergrad, grad and professional curricula to improve care for people with ASD Statewide training for healthcare professionals and pre-professionals to improve care Dear NJACE Website Users, we try to make our website as accessible as possible for everyone, including anyone with special needs.

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A Self-Advocate's Guide to Medicaid - Autistic Self Advocacy Network

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Medicaid is the biggest health care program in the country. It's an important part of the United States health care system. But a lot of the information out there about Medicaid and attempts to change it can be difficult to understand and navigate. That's why ASAN is proud to announce...

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AUTISM NEWS AND RESOURCES FROM AUTISTIC PEOPLE, PROFESSIONALS, AND PARENTS

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Autism news and resources: from autistic people, professionals, and parents

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Autism affects children of every race, ethnic group and socioeconomic status. African-American children are frequently confronted with late diagnosis or misdiagnosis. African American Autism Support is vital to the development of underserved children. Our goal is to help families identify the warning signs of autism early on. We can start to overturn these disparities by helping African-Americans with autism reach their full potential. We empower families with information on autism that they can use to advocate for services for their child.

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Autism affects children of every race, ethnic group and socioeconomic status. African-American children are frequently confronted with late diagnosis or misdiagnosis. African American Autism Support is vital to the development of underserved children. Our goal is to help families identify the warning signs of autism early on.

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For years, the medical community has studied and treated autism as a "white person's" disease, and, today, research and therapy remain geared toward affluent, white people and families - leaving people of color in the lurch. By Carrie Arnold

(Photo: Satish Krishnamurthy/Flickr)

Like many parents, Camille Proctor went to her first support group for parents of children with autism to feel less alone. Her son Hunter had just been diagnosed, and Proctor had lots of questions. All of the other parents at the various support groups she went on to visit were white; Proctor is African American. When she asked questions about how she should teach her son to interact with police, given that the wrong response by a black boy or man could be deadly, she just got blank stares.

"They had no idea how to respond," Proctor says.

For its part, she says, the black community didn't seem to understand what it was like to raise a child with autism. Her son Hunter's repetitive behaviors, like flapping his hands and rocking back and forth (known as "stimming"), and emotional meltdowns were seen as bad behavior rather than signs of autism. When her son was screaming in Macy's because he was overstimulated, a black salesperson went up to Proctor and told her Hunter "just needed his butt whipped." Proctor felt utterly alone and misunderstood. Her dogged determination ultimately got her son the services he needed to thrive, but she knew other parents weren't as lucky. She also knew that many other black children had autism just like Hunter, and that they were probably feeling just as isolated and scared as she was.

Not long after Hunter was diagnosed, Proctor founded the Color of Autism, a support group dedicated to helping other minority families affected by autism. The autism world prides itself on honoring neurodiversity, but it has been less successful at recognizing racial and ethnic diversity. The statistics are stark: Studies by the Centers for Disease Control and Prevention (CDC) show that rates of autism are essentially identical across racial and ethnic groups. But when you look at children and adults actually diagnosed with autism, white children are 30 percent more likely to receive an autism diagnosis than blacks, and 50 percent more likely than Hispanics, according to 2014 data from the CDC. Minority children are also diagnosed significantly later than white children.

Understanding autism, and helping those with the condition reach their full potential, means seeing all of its shades.

These differences are more than trifling discrepancies. Earlier diagnosis means earlier intervention, which is closely associated with better outcomes.

"Every month that accrues is problematic because the effects of treatment start to diminish," says Jason Travers, an assistant professor in special education at the University of Kansas. "Minority children are less likely to get the label of autism, and it takes a longer time for them to get services."

These racial and ethnic disparities extend to other areas of autism too, including research, treatment, and advocacy, and, in each area, white families have the upper hand. Luckily, new research is helping to illuminate the true diversity of autism in the United States, and to help make services available to all families who need them. Understanding autism, and helping those with the condition reach their full potential, means seeing all of its shades.

In some of the first clinical descriptions of autism, psychologist Leo Kanner wrote that many of the families who sought his opinion were white and middle- to upper-class. What Kanner failed to consider was that the parents who had the resources to seek out a specialist about their child's developmental problems were likely those with resources to begin with. In 1940s America, those parents were almost exclusively white, and ever since, autism has been treated largely as a white disease. Even when autism began to reach wider public awareness and understanding in the 1980s - especially after the movie Rainman  - many Americans continued to assume that the condition only affected white people.

Hearing adults in her life talk about Rainman was the first time that Jackie Pilgrim remembered hearing about autism.

"I heard some of my relatives talking about the movie, and they said that autism was just a white people's problem," Pilgrim says.

She didn't hear about the disorder again for another 20 years, until her son began showing developmental delays, and Pilgrim began her search for answers. Pilgrim's son was born at only 30 weeks gestation and spent the first three months of his life in the neonatal intensive care unit. As a result, he had always been somewhat behind his peers developmentally, but for a while he seemed to be progressing - until that progress abruptly stopped, shortly after his second birthday.

"Everything my son was went away," Pilgrim says. "He was just a shell."

Unsure of what was happening, Pilgrim opened Google and typed her son's symptoms into the search bar. The first result that popped up was a page about autism. When she visited doctors, though, they wouldn't believe that Pilgrim's son had autism. "Nobody wanted to say the word," Pilgrim says.

Regardless of whether a parent immediately thinks of autism when they see their child struggling, race or ethnicity doesn't make a difference in when a parent first brings a child to the pediatrician with their concerns, according to John Constantino, an autism researcher at Washington University in St. Louis.

"Parents of all backgrounds generally do a really good job of identifying when something is going on with their child, when he or she starts falling behind," Constantino says.

Here, however, is where the paths diverge. Getting an autism diagnosis for any child can be a slog, with multiple appointments with a variety of specialists. An average of two years passes, regardless of race, between the time parents first recognize issues with their child and when the child receives an autism diagnosis. For minority children, however, that time tends to be significantly longer, although time to diagnosis has decreased across the board, according to Constantino. These children are either left undiagnosed, or are misdiagnosed with an adjustment or conduct disorder. And minority children who are diagnosed with autism at younger ages are generally more severely affected than their white counterparts, according to a 2012 study in the Journal of Autism and Developmental Disorders.

"In minority children, people tend to see behavior problems rather than an impaired kid," says Celine Saulnier, clinical director for research at the Marcus Autism Center at Emory University.

"I cashed in my 401K. Insurance didn't cover a lot of Hunter's treatment, and if I couldn't come up with the money, he couldn't get treatment. I went from something to nothing, just to get him therapy."

Research has found that even pediatricians and other medical experts continue to labor under the delusion that autism is primarily a disorder among white children. They are also more hesitant to respond to the concerns of minority parents, less likely to be using proper autism screening methods, or simply less likely to be aware of the autism symptoms in very young children. The result is that parents like Proctor and Pilgrim are more likely to be given the "wait and see" approach, further narrowing the window at which autism therapies are most effective.

In the U.S., poverty and ethnicity are so tightly linked that it's difficult to disentangle the effects of socioeconomic status from those of race, says Lindsey Williams, a doctoral student in psychology at Louisiana State who is completing her dissertation on this topic. Regardless of ethnicity, many poor families face similar problems in getting help for their children.

"It often takes multiple appointments to get a diagnosis, which is a problem in families where parents are paid hourly, only have a single car, and also have to arrange childcare for other siblings. Each additional step it takes for an assessment means that more people fall through the cracks," Williams says.

The problems aren't limited to autism diagnosis; they persist into the treatment process. For one thing, many therapies that help autistic children learn social and communication skills require that therapists come to the home. For families with relatives who are undocumented immigrants, therapists coming in and out regularly can inspire apprehension and fear. Others may be embarrassed about the quality of their living quarters, according to Williams.

Minority children are also less likely to receive specialty care related to autism. A 2013 study in the journal Pediatrics found that black children with autism have one-third the odds that they will see a gastrointestinal or nutritional specialist compared to white children. They are also less likely to receive treatment from neurologists, psychologists, psychiatrists, sleep specialists, and epilepsy specialists. Nor does insurance necessarily cover any of the therapies these children do get, which can leave already strapped families even worse off.

When Proctor's son was diagnosed, she considered herself to be comfortably middle class. Now, she doesn't.

"I cashed in my 401K. Insurance didn't cover a lot of Hunter's treatment, and if I couldn't come up with the money, he couldn't get treatment. I went from something to nothing, just to get him therapy," Proctor says.

Paul Leigh, a health economist at the University of California-Davis, analyzed the amount of money the state of California's Department of Developmental Services spent in the 2012 fiscal year on each child with autism, based on age, race, and other factors. The results, published last month in PLoS One, revealed that the state had spent $11,480 for each white child between the ages of three and 17, but only $9,571 for each Hispanic child and $9,482 for each African-American child. Although some of this disparity may be explained by differences in the cost of therapists in different parts of the state (it takes more money to pay for a therapist in pricey San Jose, with a large white and Asian population, than in the Salinas Valley, which is poorer and predominantly Hispanic), Leigh says that the discrepancy is still troubling.

"African-American and Hispanic children don't need fewer services than white children," Leigh says.

The situation doesn't necessarily improve once children with autism are old enough to enter school. In states like California, once a child starts attending public school, government funding for autism therapies shifts from the state to the local school district - and convincing the school district that a child does, in fact, have autism isn't always simple. Some districts accept an outside medical professional's diagnosis, while others don't. For children who are still undergoing the "wait and see" approach, many receive a broader diagnosis of a developmental delay, which entitles a child to different services than autism would. Getting the proper services for a child often requires detailed knowledge of the inner workings of the school system, a comprehension of the minutiae of laws and regulation, and the time and ability to show up at meetings armed with information. Some parents end up hiring a professional advocate to assist, but not all families can afford to. Those without can be left in the lurch.

Even most of what scientists know about autism - what its prominent characteristics are, what genetic and biochemical pathways are affected - is based on research done primarily among white children and adults. Participating in DNA studies often requires blood samples from the child and from both parents - a problem, since there's a significantly greater number of black than white children live in single-parent households. This persistent bias is one of the reasons that more than 85 percent of the 1,167 families enrolled in the Autism Genome Project Consortium were of European origin and only 2.3 percent of people enrolled in the Autism Genetic Resource Exchange were black.

"We need more and more families for gene discovery studies in complex diseases, and the gap is widened even further because African Americans are even more underreported even as the size of studies is exploding," Constantino says.

When Travers reviewed 408 peer-reviewed studies on evidence-based practices in autism, he found that only 73 of these studies - less than one in five - reported the race of participants. Of those studies that did report race, Travers' March 2016 article in the Journal of Special Education revealed that nearly two-thirds of participants were white. Only around 6.8 percent were black and 2.5 percent were identified as Hispanic.

Researchers also don't know whether the symptoms that parents first notice in their children differ by race and ethnicity. If some groups of parents are more likely to notice, say, social difficulties while others notice repetitive behaviors, it could be useful to help doctors zero in on what might be really going on.

Scientists have slowly begun making inroads on these fronts, and have sought to recruit more study participants from diverse communities while providing educational opportunities to minority parents. In the absence of concerted help from larger autism advocacy organizations, people of color have created their own grassroots efforts to help those on the spectrum, such as Autism in Black and Proctor's group, the Color of Autism.

The autism community has made tremendous strides in educating the general public about neurodiversity and embracing the range of ways that different brains can work. They need to take that same effort to embrace the full range of skin colors that people with autism also have.

"Autism is seen as a white disorder. It's not a white disorder, it's a people disorder," Proctor says.

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For years, the medical community has studied and treated autism as a "white person's" disease, and, today, research and therapy remain geared toward affluent,

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Training modules for EBP's (for educators & providers) 

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Training modules for EBP's (for educators & providers) 

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AFIRM Modules are designed to help you learn the step-by-step process of planning for, using, and monitoring an evidence-based practice (EBP) with learners on the spectrum from birth to 22 years of age. Supplemental materials and handouts are available for download.

Download an overview of the Components of AFIRM to learn about modules, resources, and professional development options.

Visit the Learn with AFIRM section to find out more.

To learn more about the updated EBPs, check out the National Clearinghouse on Autism Evidence and Practice website.

Introduction to Autism

Selecting an Evidence-Based Practice

AFIRM for Paraprofessionals: Simulated E-Learning

These simulated learning modules include brief overviews, video examples, and activity-based scenarios to learn foundational EBPs.

Reinforcement: Introduction & Practice

Prompting: Introduction & Practice

Supporting Peer Interactions: Introduction & Practice

Time Delay: Introduction & Practice

Visual Cues: Introduction & Practice

AFIRM for Toddlers

AFIRM for Toddlers are a set a of modules developed in collaboration with the Early Childhood Technical Assistance Center for early interventionists working with toddlers, families, and early care providers.

AFIRM for Toddlers Introduction

Behavior Supports for Toddlers

Naturalistic Interventions in the Child Care Setting

Parent-Implemented Interventions in the Home Setting

Reinforcement

Prompting

Visual Supports

Available Evidence-Based Practice Modules

The National Clearinghouse on Autism Evidence and Practice (NCAEP) identified 28 EBPs based upon a systematic review. The EBP modules are designed to help you learn the step-by-step process for planning for, using, and monitoring an EBP with learners with autism from birth to 22 years of age.

Augmentative & Alternative Communication

Antecedent-Based Interventions

Ayres Sensory Integration®

Behavioral Momentum Intervention

Cognitive Behavioral Intervention

Direct Instruction

Differential Reinforcement

Discrete Trial Training

Exercise

Extinction

Functional Behavioral Assessment

Functional Communication Training

Modeling

Music-Mediated Intervention

Naturalistic Intervention

Peer-Mediated Instruction & Intervention

Parent-Implemented Intervention

Prompting

Reinforcement

Response Interruption/ Redirection

Self-Management

Social Narratives

Social Skills Training

Task Analysis

Technology-Aided Instruction & Intervention

Time Delay

Video Modeling

Visual Supports

Available Supplemental Modules

Several EBPs identified in the previous review (Wong et al., 2014) were recategorized or reclassified in the most recent review by the National Clearinghouse on Autism Evidence & Practice (see Steinbrenner et al., 2020, p. 30 for details). The four modules below will remain available for AFIRM users as supplemental materials:

Picture Exchange Communication System

Pivotal Response Training

Scripting

Structured Play Groups

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AFIRM Modules AFIRM Modules are designed to help you learn the step-by-step process of planning for, using, and monitoring an evidence-based practice (EBP) with learners on the spectrum from birth to 22 years of age. Supplemental materials and handouts are available for download.

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Spectrum Live is our online series, where we chat to autistic people and their families, and autism professionals.

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It's a myth that autistic people with minimal support needs are expressionless or discourteous. It just might not be the what you're used to.

If you know someone who's autistic who needs less support, you may have experienced occasions when their conversational tone or behaviors seem emotionless, detached, or even "rude."

These interactions may leave you confused and wondering how to respond - especially if you're unsure why this behavior is happening.

Autism spectrum disorder (ASD) is a neurodevelopmental disorder that affects how a person verbally and nonverbally communicates, engages in social interactions, and perceives or reacts to the world around them.

The DSM-5, a diagnostic manual used by some medical professionals to diagnose ASD, categorizes autism into three levels based on how much support the person needs:

Level 1 describes autistic folks who need minimal support in daily activities, with some social and communication challenges and repetitive or restricted behaviors.

Level 2 means they face more significant challenges with communication and need substantial support to navigate day-to-day activities.

Level 3 includes individuals who need more support than level 2, which might require one-on-one help throughout their day.

Level 1 autism includes autistic people who were once referred to as having "high-functioning autism" or Asperger's syndrome. Some people may still identify with Asperger's symptoms, or as being an Aspie or autist in their community.

Needing minimal support means that challenges faced by the autistic person aren't substantial enough to require help from others for most daily activities. This individual may live independently, be married or have a long-term partner, perhaps with kids, and autonomously maintain a career.

Autistic people who require minimal support may excel in specific subjects or areas of interest and become very successful in their chosen field of study or employment.

Still, some characteristics of autism can affect social communication, causing an autistic person's interactions to be misinterpreted as curt or blunt.

Differences in processing sensory input

For most folks, the noises produced by a room full of people aren't bothersome. But this noise can be so overwhelming for an autistic person with sensory processing challenges that they must escape it - sometimes abruptly.

Difficulties with executive functioning

Executive functioning is the ability to stay organized, control behaviors, and interact with others.

Challenges with this type of functioning may make it seem like an autistic person's behavior is rude, when in reality, they may be having trouble keeping up with nuanced social cues or multiple people talking at once.

Differences in communication style

An autistic person's communication style is often misunderstood. Because it may differ from society's expectations, nonautistic people can misinterpret what they say or do.

As a result, many Aspies feel as if they're navigating a strange world filled with "neurotypicals" who don't understand how they interact. There are even online groups, such as Wrong Planet, that offer support for those who feel this way.

Want to learn to better communicate with an autistic person? You can check out this solid resource.

To set the record straight on stigmas often associated with autistic folks and Asperger's, we dove into research to distinguish fact from fiction.

Hopefully, this helps clarify a bit better why an autistic person may act in ways that might be difficult for you to understand.

Myth: Autistic people have an expressionless face during direct communication

Fact: Although some autistic people seem to have fewer facial expressions during interactions, 2016 research suggests this may be due to the presence of alexithymia, not autism.

Alexithymia isn't well understood, but is characterized by difficulties with expressing and identifying emotions.

Other research suggests that nonautistic people may not be reading the autistic person's facial expressions accurately during conversation due to differences in how autistic people communicate.

Myth: Autistic people have monotone speech, even when passionate about a topic

Fact: While it's true that autistic people who need less support may have less intonation or variation while speaking, this doesn't mean they lack emotion.

According to a people with ASD express emotion while speaking - it's just conveyed differently than what neurotypical people are used to.

Researchers said the autistic participants in the study produced emotional speech that was more intense for a longer duration and had longer pitch ranges as compared to neurotypical participants.

These differences in emotional expression may make it more difficult for nonautistic people to read the emotional state of the autistic speaker.

Myth: Autistic people needing minimal support are purposely rude or blunt

Fact: Autism, in part, is characterized by literal thinking and difficulties understanding and responding to social cues. It's also associated with challenges in perspective-taking or understanding another person's emotional state and acting on that information properly.

Because of this, autistic people may be seen as brusque, when in fact, they're just misunderstood.

For example, a person with autism may abruptly end a conversation by saying, "I have nothing more to say to you." To you, this could appear extremely dismissive, but in reality, this person may have literally run out of things to say and is letting you know it's time for the conversation to end.

In addition to this, autistic people tend to avoid eye contact when interacting, which may be misinterpreted as disrespectful.

However, just because there's no direct eye contact doesn't mean they aren't interested or listening during the conversation. This is simply a difference in social nuances that you might not be used to.

Myth: Autistic folks don't understand social cues or etiquette

Fact: Social communication is an intricate dance between two people using social skills typically learned by example from infancy through adulthood.

For autistic people who need less support, this social reciprocity can be challenging to learn just by experiencing it.

That's why many specialized educational programs include social communication as part of their curriculum.

A good example of a perceived lack of etiquette or missed social cues is when an autistic person interrupts you while in the middle of a conversation with someone else. Although it may come across as blatant, in reality, the autistic person simply might not internalize that society considers interrupting poor etiquette.

In this case, they might have also missed the nonverbal cues you hinted at to let them know the interruption was socially uncouth.

Myth: Autistic individuals lack empathy

Fact: Being autistic doesn't equal a lack of empathy. This is perhaps the biggest myth of all about autism. However, how an autistic person might process and express empathy may look different from what you're accustomed to.

A 2018 study investigated this further and found that autistic people have the same level of emotional empathy as nonautistic individuals, but may have difficulties with cognitive empathy.

This means that an autistic person may not recognize when someone is in distress, but can feel someone's emotional state and has the drive necessary to respond or offer assistance.

How does this look? Say, for example, you're struggling to carry groceries. An autistic person may not recognize this means it's time to offer help. However, telling them you're having trouble might prompt them to provide the assistance you need.

Myth: Autistic people have communication challenges because of a lack of intelligence

Fact: This misconception associated with autism may be rooted in the general belief that effective communicators are more intelligent.

Autistic people are intelligent. But because of expressive and receptive language challenges, it may present differently.

A conference paper from a 2012 International Meeting for Autism Research reported that when autistic children who had significant challenges completed IQ tests that didn't rely on verbal abilities, some scored within or above the normal range in intelligence.

Additionally, other research suggests that social anxiety plays a significant role in the communication challenges experienced by autistic people.

This means that fear of social interactions may hamper an autistic person's ability to communicate effectively. Scientists who conducted this study suggest that treating social anxiety could help increase comfort and enhance communication between autistic and nonautistic people.

On a final note, the myth that autism equals lower intelligence may be one reason why some neurotypical people sometimes feel the need to talk to autistic people in simple, easy-to-understand language.

However, this can hamper an autistic person's self-esteem. Instead, you might look to respect the person's abilities by speaking with them as you would anyone else.

When interacting with an autistic person who needs minimal support, some behaviors you encounter may seem rude. If this happens to you, try not to take it personally, as autistic folks may not realize their words or behaviors are negatively affecting you.

Autistic people think differently, and that's OK. This can offer a fresh perspective on a situation or problem you may not have thought of before.

Practicing empathy toward autistic people and being open to understanding them on a deeper level can help you learn better ways to respond to what initially seems like rudeness.

To do this, you could try:

looking at the situation from a purely logical perspective

assessing the interaction and making a mental note of subtle social cues the autistic individual may have missed that you could instead verbalize

identifying if the environment at the time of the interaction wasn't accommodating to their sensory needs

understanding that, most likely, the autistic person isn't acting ambivalent on purpose

With understanding and compassion, you can help bridge the communication gap and foster the safe space needed to enjoy meaningful connections.

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Asperger's doesn't mean ambivalent. You might be unfamiliar when someone seems expressionless or doesn't emote in a way that you're used to.

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Share your videos with friends, family, and the world

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Double Empathy: Why Autistic People Are Often Misunderstood

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Autism affects how someone makes sense of the world around them. About 1–2% of people are autistic. You might have an autistic classmate or family member, or maybe you are autistic. Autistic people might communicate differently than people who are not autistic. This means that it can be difficult fo…

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There is a lot that I want you to know . . .
Many people see a label like autism as a lifesaver. Those who discover their diagnoses as adults usually wish desperately that they could have received them as children. Getting the label, they say, would have made them feel understood for who they were, saving them from years of being called "weird." As such, in our society today, there is a push to ensure all autistic children are identified.

But there is another side to the story. Here, I want to share my experience with being given this label and let you know how it has affected me.

I was misdiagnosed with autism at age seven. I met zero percent of the criteria. This is even more surprising because I'm female, and girls are much less likely to receive this diagnosis. Many professionals believe autism is under-diagnosed in females, and every diagnosed female I've met feels lucky to have her diagnosis. All have a story of their autism being missed-of it being incredibly hard to be identified. Most I've spoken to think it would have been great to receive all of this help at a young age.

(Boy, how lucky I am!)

While I was too young to relay to you the exact reason I was misdiagnosed, I believe the psychologist based it on my moments of frustration stemming from being bored and under-challenged and the fact that I was the only child who chose not to play kickball in my small first grade class. She decided to give me the diagnosis just in case.

The thing is, many gifted students experience problems related to boredom and have different interests from their classmates. These are far from meeting the severity of a clinical disorder and are usually resolved by being placed in a more challenging curriculum with like-minded peers. Several parts of my psychologist's report are either missing key data or dramatizing things such as me not asking for a tissue as "problems with verbal requesting skills." My mother remembers that when she was given the report, they said to her, "Now you can get services." It sounds like I was diagnosed even if the criteria was vague just so I could get some help.

The thing is, I didn't need the help. I don't need therapy or accommodations. I want others to know that mental health over-diagnosis is not benign-and that receiving therapy and accommodations I did not need hurt me.

I want others to know that mental health over-diagnosis is not benign-and that receiving therapy and accommodations I did not need hurt me.

The best argument for diagnosis that I've seen gives a three-part purpose: Services, Community, and Explanation. While I don't dispute that there are benefits in these areas when the diagnosis is accurate, when misapplied, there will be harm instead. Allow me to illustrate how, in all of these areas, my diagnosis did damage.

Services: When They're Unneeded

The therapy I was given made me feel constantly on guard. It taught me-and this was reiterated for years-that I could not possibly fit in.

When I would then go out into the world, instead of feeling supported by the services, I would struggle to interact. They had shut down my natural instincts, replacing them with self-doubt. In my head I would be telling myself, "You have autism. These people don't get you. Think of the right thing. You won't understand them. They won't understand you." I was taught, essentially, to fear the outside world because I would be overwhelmed or misunderstood.

But I'm not.

If I had trusted my natural instincts, I could have walked through the supermarket or had a conversation with neurotypical people, and it would have felt completely ordinary. I once had to make a phone call for a class, and after it ended, I started crying. Not because I was scared, or because it was hard-but because of how easy it had been. How I'd said the right thing just from what came naturally. After that, I was angry, so angry, at the autistic community for all they had wrongly told me over the years about the challenges I would face.

I once had to make a phone call for a class, and after it ended, I started crying. Not because I was scared, or because it was hard-but because of how easy it had been.

Additionally, these treatments kept me isolated, so I missed out on core life experiences. I was given all sorts of accommodations, like extended time on tests, that I did not need in the slightest. Rather than making me feel relieved, this humiliated me. Using the diagnosis to explain my behavior resulted in people being "understanding" of problems that weren't there. This wasn't an issue of assumptions or stereotypes, as some autism activists decry: they were being perfectly understanding of someone with autism.

The problem was that I didn't have autism.

It would be as if, every time you just casually mentioned that you didn't like something, someone would reply, "I get it. It's rough being depressed. Always take time to take care of your mental health. Keep on fighting. You're beautiful." The diagnosis did not make me feel less misunderstood, it made everyone-myself included-misunderstand me.

The diagnosis did not make me feel less misunderstood, it made everyone-myself included-misunderstand me.

Community: When It's Not a Fit

Neurotypical people function differently biologically to people with autism. Just as an autistic person will struggle around their more typical peers, a neurotypical kid will struggle if she's around only autistic peers. Neurotypical kids need more active conversations. They need their social cues acknowledged just as much as autistic kids need their unique social cues understood. The reason you don't hear this acknowledged much is that it's not often that you see neurotypicals in the minority.

That, however, was my experience. I was placed in autistic classrooms, with the adults in charge believing I would feel safe and at home. They thought being around "fellow" autistics would make me feel more comfortable.

And-you guessed it-it didn't. Most of the people I met were introverts. They had so many unique fears and strange ways of communicating that I could not relate to them at all. They rarely reached out or initiated conversation. Our relationship was made up of hours of awkward silence.

I felt so isolated. I was scared-overwhelmed-by the chaos of the people around me. The teachers and counselors who advised me always said to try to be understanding of them-that they could be great friends once you got to know them. That's easy for people who already have their social needs fulfilled to say. That was not me. As painful as it is, if you are trapped in an environment where you do not belong, you have no choice but to reject it in order to break out and find what you truly need.

To further this point, medications meant to help people with psychological conditions are not intended for neurotypical brains. In fact, they can be harmful or even addictive when taken by those who do not need them. Drugs like risperdal, which is often prescribed for behavioral problems associated with autism, come with considerable risks that are only worth it if you have a real problem to overcome.

I took medications for at least five years. I did not need them. While they were prescribed to treat the sadness and nervousness I felt, they were not the right solution. They served to not only pathologize but also ignore the root concerns that would yield these feelings as normal responses, namely, the suffocating shame I felt from being tied to the wrong identity and the emotional trauma I suffered by being stuck in a therapeutic environment.

They also affected my physical health greatly. I constantly felt dizzy-so dizzy I could barely push myself to function. I would also get very, very hungry; to try and keep up enough energy to get through the day, I sometimes spent hours every morning eating. This hunger would regularly keep me awake at night. My body felt awful. I had frequent stomach aches and nausea. My mind just didn't feel natural.

And they didn't even help me feel less anxious.

If I tried to speak out against these medications, however, no one listened. The doctors blamed the side effects on stress and depression. They told me I was only insecure about medication, and if I accepted it, then I would be happy. They denied the possibility of a mental health prescription being harmful, insisting it was all the result of stigma.

While I am not equipped to comment on whether medication is generally over-prescribed or not, the reality is that people like me exist, and our stories and concerns should not be shut down to protect a particular agenda.

And I'm not just talking about the meds. They said these sorts of things when I complained about any part of my treatment. Saying therapy harmed me. Saying autism supports harmed me. And especially saying I don't have autism, and that diagnosis can be inaccurate. "You can't say that," they insisted. "That creates a stigma. Mental health treatment is helpful. It just is."

Before I became aware of my misdiagnosis, I'd felt the treatments I received were wrong, but my feelings had become so shut down that I'd started believing I was only depressed due to stigma and my own stubbornness. After I realized my misdiagnosis, however, I finally felt I had the right to choose what worked for me and say "no" to what didn't. That was when I confronted the professionals in my life with what I'd learned and used that knowledge to make the decisions I'd always known-but didn't trust-were right.

I stopped taking the meds.

I feel amazing. The best I've ever felt. The happiest and the healthiest.

After all that, I can't believe it's possible.

Explanation: When It's Wrong

While those who receive a correct diagnosis often report feelings of validation, when someone is given a label they do not need, their identification with it does damage. It's disorienting to have others insist a diagnosis fits you when it doesn't resonate with your experiences.

It's disorienting to have others insist a diagnosis fits you when it doesn't resonate with your experiences.

For a time, I entertained the possibility that they knew better. As I read autism advocacy websites and group forums, I found more to compound the distortions I'd been fed. There would be stories about how tapping their fingers when bored was "stimming" and vague statements about "struggles in conversations" that drew no responses. No matter what serious signs of disorder I lacked, I assumed that an awkward moment or a shy, nerdy personality was a sign of autism. Small natural human fidgets, having a hobby I was a geek about, disliking the sound of squeaky markers, not eating a side dish at dinner I didn't prefer-I led myself to believe that all of these were complex, neurodivergent traits that made me stand out and had a deep significance.

Meanwhile, neurotypical people do all these things and don't even notice it.

I almost failed a dance class because I believed that my Asperger's meant I couldn't escape being an awkward dancer. Having poor coordination, after all, is a part of the autistic experience.

It was only later that I learned it's not exclusive to autism. Anyone can be bad at dancing. It's not inherently a marker of a major cognitive difference. What's more, anyone-but maybe especially people who don't have autism-can learn and improve.

Anyone can be bad at dancing. It's not inherently a marker of a major cognitive difference. What's more, anyone-but maybe especially people who don't have autism-can learn and improve.

The most confusing things I read in those online autism forums were the other participants' reactions to the statement, "You don't look so autistic."

The replies would be along the lines of either "Yes, but it's really hard for me in my head," or "That's because I've been abused to act normal."

But these "normal" behaviors were natural for me.

When I read those statements, I felt as if any skills I displayed were not genuine, instead coming from a place of pushing myself extra hard to fit in. It felt as though no one in the autistic community would believe my social skills to be real, instead seeing them as a painful effort to "fit in." Even if I wanted to be a leader, or be outgoing and enjoy conversations, it felt as though it wasn't ever real-in thinking the label was true, I believed those things just had to be really, really hard for me. At worst, and most of the time, the notion that I was only "masking" continued to make me shoot down my true personality. Those forum participants were constantly reminding me that that outgoing leader who sometimes emerged just could not be me.

It felt as though no one in the autistic community would believe my social skills to be real, instead seeing them as a painful effort to "fit in."

Many misinterpret my story. They think I just got the wrong sort of help or understanding. They think that I'm socially anxious. But I'm not afraid of social interaction. Rather, something happened to me that taught me I would surely struggle to handle it.

Those who struggle to hear what I'm saying can only understand what it's like to not fit in. They can imagine needing a different sort of accommodation; what they can't imagine is genuinely just not needing any help.

For this reason, narratives about embracing the outsider and breaking norms scare me when I hear them. I've been trapped in this story for so long, singing a song on repeat without ever really knowing the words.

My story is not one of breaking out of the norms. I'm sick of breaking out of them. My story is one of fitting in. And I don't mean that like, "I am normal and society should change and understand that I do belong despite the world," but, "Oh, duh, yeah, of course you can do that."

There was no freedom from the diagnosis. No escape. No way for it to not affect who I was. There's no way to simply brush it off like an unfortunate accident.

I was not a person with autism, but an autistic person. That was the language taught to me by the autistic community. They wanted to save me, but only saved their own pride.

This celebration of autism left any celebration of me feeling hollow. To provide an example, I came across a blog post on an autism community website entitled " How Satoshi Tajiri's Autism Helped Create Pokémon." Seeing that, I felt as if it did not matter what my name was or what talents I had-all of my strengths belonged to autism.

Realizing Your Old Narrative Was Wrong
Dear Autism, I am writing this because I want you to know-You. Don't. Own. Me.
I distinctly remember the moment I realized something was wrong.

I was sitting in a beach house, just observing the room, and I recall my exact thoughts: "I am looking at a lamp. I am looking at this lamp through my autistic perspective."

Though the label had always felt like a trap, it was there that it really hit me. Something was wrong. I couldn't wait any longer. I had to get out.

That night, I contacted SENG to inquire whether they could help me investigate a misdiagnosis.

That's the moment where I first joined the gifted community. That is how I got to be where I am today.

I understand that many feel celebrated because they are autistic-that they feel it affirms who they are. From where I stand, it can look like they feel there is no difference between what autism is and who they are -these things are one and the same.

What I can say is this: celebrating autism never felt like celebrating my true personality. I had been pushed so far into an isolating diagnosis that that diagnosis had overtaken my entire perspective. It was not something about me that I felt proud of, but some other force I had to sell myself to.

After my erroneous diagnosis, I endured years of traumatizing therapy, isolation, and medications, instilling countless forum posts' worth of meaning to my smallest behaviors. I felt so empowered, so free, so understood when I discovered the label that would reframe them as a small, meaningless, minor personality trait: weird.

I felt so empowered, so free, so understood when I discovered the label that would reframe them as a small, meaningless, minor personality trait: weird.

I wish I was never "identified" when I was younger.
But hey, I'm sorry they called you "weird." That must have really sucked.

Margo Margan

Margo Margan is an aspiring scriptwriter and board game designer who values hard work, honesty, and responsibility. Having grown up pressured to be "unique," her positive disintegration led her to discover her authentic love for the standard and to explore the reasons why certain values become standards.

A proud ESTJ, Margo is happiest when leading events and meeting new people, but she also enjoys analyzing obscure fictional characters and taking standardized tests.

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Dear Autism: When a Label Is Wrong - Third Factor

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Margo Margan was diagnosed with autism at age 7 to make her eligible for extra services. Turns out she never needed those services.

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Earlier this month, I attended the Autism-Europe International Congress in Kraków, Poland, where the theme was "Happy Journey Through Life." Although this sounds like an admirable goal, I would not choose the word "happy" to describe my daughter Jodie's life with profound autism, nor would many other families who struggle with the day-to-day challenges of life on the profound end of the autism spectrum, a reality that is largely invisible to mainstream society.

Jodie is minimally verbal and suffers from painful self-injurious behaviors, intellectual disability, aggression, anxiety, sleeplessness and seizures. Her frequent aggressive outbursts make it hard to involve her in community activities. Although she is often content and enjoys working on a farm, no one who witnesses her pulling her own hair or headbutting the wall would call her "happy" during those episodes. And my family and I are not "happy" that she will require 24-hour care and supervision for the rest of her life.

My experience at the Autism-Europe International Congress - and my experience as a parent of a child with profound autism - makes me more convinced than ever that we need to bifurcate the diagnosis of 'autism spectrum disorder' and add a new diagnosis of 'profound autism' to better serve this vulnerable and underserved population, which is consistently overshadowed by the higher-functioning members of the autism community.

The first mention of "profound autism" in the scientific literature came in 2021 in The Lancet Commission on the Future of Care and Clinical Research in Autism report. The commission was co-chaired by Catherine Lord, George Tarjan Distinguished Professor of Psychiatry at the Semel Institute of Neuroscience and Human Behavior at the University of California, Los Angeles. I also served as one of more than 30 commissioners. The report stated that the term "profound autism" is critical to distinguish people who have high dependency needs from the more verbally and intellectually able population of people with autism.

In reviewing several datasets of people with autism, the Lancet Commission estimated that close to 50 percent of the autism population falls into the category of profound autism. This means that for every autistic person trying to get a job at Microsoft, there's also one who cannot grasp the abstract concept of what Microsoft even is or does.

Families like mine who face profound autism have advocated for this distinction for quite some time. We strongly believe that the breadth of the autism spectrum has become unwieldy, and the phrase "autism spectrum disorder" has become such a big-tent term that the people under that tent often have little in common with one another. Autism can mean genius or an IQ below 30. Autism can mean highly verbal or nonverbal. It can mean graduating from Harvard Law School or 'exiting' high school with a certificate of attendance. If we are going to be able to personalize our approach to care, as the Lancet Commission report suggested, we need terminology and language that are specific and meaningful, rather than terminology that lumps everyone together.

The neurodiversity community's success at drawing attention to its issues has led many without deep experience with autism to conclude that those issues are representative of everyone. To the broader public, the word "autism" now only describes the more verbal, traditionally skilled, visible end of the spectrum - because people who meet those criteria are able to have a voice, attend conferences, represent themselves at policymaking meetings and appear in the media. The result is that autistic people with severe intellectual disability and the most challenging behaviors have become invisible and been left behind.

This blind spot was painfully illustrated to me at the Autism-Europe International Congress, where the vast majority of delegates represented the higher-functioning end of the spectrum and yet claimed to speak for everyone with autism. Many delegates became visibly angry over some of the terms presenters used in their talks to describe autism traits, such as "patient," "disability" and even "intervention." Many took to social media to bash these scientists; others walked out of the room.

But these words are necessary and correct. My daughter consumes medical services; that makes her a patient. She has a disability; if she didn't, she wouldn't qualify for services. The same is true for so many other families who suffer (yes, suffer) from profound autism.

There were several instances at the conference in which the presenters gave evidence of this growing dichotomy. The most vivid was the keynote address by Brian Boyd, William C. Friday Distinguished Professor in Education at the University of North Carolina at Chapel Hill, titled "Reconceptualizing repetitive behavior in autism." Boyd presented two videos to represent different types of repetitive behaviors. The first showed an autistic adult who had parlayed his special interest into a job, and who spoke eloquently about the challenges of socializing and how he values his alone time. The second video was preceded by a trigger warning, greeted with "oohs" and gasps from the audience, and immediately criticized on Twitter, as it showed a profoundly autistic child engaging in self-injurious behavior.

This video reflected a normal day for many families with a profoundly autistic child, who can't, as Boyd suggested the attendees might do, "cover their eyes and ears" to hide from what is happening around them. If those who purport to represent and speak for the full autism spectrum can't even observe, for a few seconds, the daily behaviors many with profound autism experience, how can they advocate for their needs? Boyd rightly pointed out that these two people need vastly different types of interventions, as they face vastly different situations. What he described were, in fact, the two extremely different types of autism.

Similarly, in her keynote address, Lord showed data on the outcomes of people with autism, based on a 30-year longitudinal study. The outcomes of those with low IQ scores, who likely would qualify for the profound autism diagnosis, were drastically different - and far worse - than the outcomes of those who are higher functioning. And when asked how people in the study felt about their future, verbal young adults cited "mood, anxiety and depression" as core factors in their happiness, whereas the parents of less verbal young adults described "difficulties with aggression" as the key determinants. In short, if we are going to meet the needs of people with different types of autism, we need very different types of interventions based on their functional level.

One of the themes of the Autism-Europe International Congress was a call for greater participatory research. At the meeting, this meant research being done by and with input from high-functioning adults with autism, but not from parents. Much of the research the delegates called for focused on mental health and well-being. But when it comes to the type of research needed, there are dramatic differences in priorities between verbal autistic adults and parents of profoundly autistic people, as Lord articulated. According to several delegates and posts on Twitter, any "intervention" research - behavioral or pharmacological - is "ableist," "neuronormative" and "pathological." Yet this is exactly the type of research families of those with profound autism want, need and deserve. On the other hand, in the profound autism community, studies of determinants of "autistic flourishing" are viewed as luxuries, as families struggle to meet their children's basic needs and keep them physically safe.

Another theme at the conference was the need to use "neutral," non-threatening language. Several presenters actually amended their slides at the last minute to remove any trace of language that might get them called out by neurodiversity advocates on social media. Soon, they may be afraid to present scientific findings at all, for fear of being canceled. There is nothing beneficial or even neutral about cleansing the words needed to describe the scientific and practical realities of autism. Such so-called neutral language robs the community of the ability to even describe the day-to-day lives of people with profound autism.

Although it is regrettable that some people are triggered by reasonable terminology, no one should have the power to censor language to exclude the observable realities of autism. Scientists and advocates need a full semantic toolbox to describe what is happening in the real world. Pretending people with profound autism don't exist by eliminating language to describe their symptoms is itself ableist. Unlike the attendees in Boyd's presentation, we cannot cover our eyes and ears to the reality of profound autism.

After speaking to many of the congress' delegates and presenters, it seems clear to me that the broad autism community, as currently defined, will never agree on priorities, needs or language. It is time to admit that lumping everyone together along one spectrum has created rancor and ill will. There are real-world implications for people with profound autism when high-functioning advocates seek to defund and deprioritize medical research, block access to treatment and clinical care, censor necessary and accurate scientific language, and advocate for policies that cause real harm to those who will not and cannot ever live independently. Only by returning to at least two separate diagnoses can we begin to meet the highly diverse needs of both groups.
Cite this article: https://doi.org/10.53053/HPJN5392

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My experience at the Autism-Europe International Congress - and as a parent of a child with profound autism - makes me more convinced than ever that we need to bifurcate the diagnosis of 'autism...

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Freedom From Defense Mode - Asperger Experts

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You've found the key. Getting out of Defense Mode is the key to helping people on the Autistic spectrum thrive, and this course will teach you how.

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On ABA Therapy, Self-Determination, & Healthy Psychological Development

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On ABA Therapy, Self-Determination, & Healthy Psychological Development

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Before I came to my identity as an autistic person, I had a short-lived obsession with self-determination theory (SDT), a framework for characterizing the processes which foster or inhibit healthy motivation and psychological development. I'm still very curious about SDT, and I have drawn correlations between the findings of motivation research and behavioural therapy before.

So you can imagine how pleased I was to see the originators of SDT cited in a recent article which drew the same conclusion many autistic self-advocates realized years ago: long-term ABA is abuse.

It's a very brief mention:

Detrimental effects are noted after the introduction of a reward such as reduced motivation, reduced intrinsic interest, and reduced performance quality in both typical and non-typical children. Additionally, the reward-expectation even lingers after changing the target task and the environment, indicating that the only thing that is being generalized is low motivation and the need for rewards (Deci, 1971; Deci, Koestner, & Ryan, 1999; Lepper et al., 1973; Wiechman & Gurland, 2009).

Self-determination theory came about as a result of research conducted by Edward L. Deci and, later, Richard Ryan. Through experiments, they proved that extrinsic motivators actually make people less likely to perform quality work and create reliance on extrinsic motivators.

They also concluded that people are intrinsically motivated by three psychological needs: autonomy, competence, and relatedness. They call these factors innate and universal, and they play an important role in our mental well-being.

Autonomy

Autonomy refers to the ability to make choices independently (with informed consent and without coercion). Children undergoing ABA-style "therapy" are not making the autonomous choice to do so, and this may be the main reason it causes post-traumatic stress in so many of its survivors. Repeatedly experiencing something you don't want and having no way to stop it leads to learned helplessness.

I am often told that kids aren't forced to do anything in their version of ABA. However, I must remind everyone that we are talking about children (with neurodevelopmental delays, no less!) They don't have enough life experience to make informed decisions about therapy. They aren't allowed to opt out. They usually don't even get to choose their own goals.

Sure, kids might enjoy sessions for whatever treats they get as positive reinforcement, but they enjoy the treat, not the session. The most dangerous abuse is the abuse that happens when people are unaware they're being abused.

If I may digress, I recall an instance in which someone defended their use of a choke chain for their dog by saying that their dog gets excited and happy when they see it, so it clearly couldn't be hurting him. That's a false equivalence. The dog was excited because he was going for a walk, not because he loves the choke chain.

All people are motivated by autonomy, but I suspect this is even more true for autistic people. We even share the same etymology with it: "auto" is Greek for "self." We are often seen swimming against the tide while everyone else wonders why.

I've heard people claim that Greta Thunberg is being paid for her activism or that her parents forced her into it. Nah, she's just convinced by what she has read on her own and wants to fight for the future. She's exercising her autonomy as a citizen of the world. No extrinsic motivation necessary!

Competence

Competence refers to the ability to feel effective and recognized for what you do. When you are told to "presume competence" when dealing with autistic people, it's because all people do best when our abilities are recognized. Since I can't phrase it any better than this article at Very Well Mind puts it, allow me to quote directly:

Competence is increased when one is given opportunities to exercise their skills in challenges that are optimally matched to their abilities. If tasks are too hard or too easy, feelings of competence will decrease.

ABA often fails in this regard, and non-speakers who have later found a means of communication frequently point out how their competence has been undermined by it. A specific and powerful quote from Ido Kedar comes to my mind when I think about ABA and competence. He says the following in his blog post, Motor Difficulties in Severe Autism:

[My instructors] thought they were collecting data on my receptive understanding of language. They were not. I understood everything, as any other child my age would. The data they were collecting, though they did not know it, actually measured my poor ability at that time to get my hand to touch with accuracy the card I wanted, and did not reflect an accurate measure of how much I understood. My mind might be screaming, "Touch tree! Don't touch house!" and I would watch, like a spectator, as my hand went to the card my hand, not my brain, wanted. And down in the data book it would be marked that I had not yet mastered the concept of tree.

Imagine going through that for 40 hours a week. According to Deci and Ryan, feeling competent is a psychological need. With that in mind, there can be no question that ABA is psychologically abusive to those with motor difficulties.

Consider any time you decided to learn something just for fun and you're seeing competence as intrinsic motivation. Playing an instrument is a good example. Not everyone who learns an instrument is doing so to make money. It's nice to have mastered something and then perform as a display of that mastery. I myself experienced a competence boost when my recent article was noticed and well-received by quite a few people that I admire.

Relatedness

Sometimes called "social relatedness," relatedness refers to the ability to experience connections with other people and to feel a sense of belonging. Relatedness is so important for neurominorities. Our brains are very different from the majority of brains, and we are often targeted, bullied, and singled out for being "weird."

One of the biggest myths about autistics is that we lack empathy. I mentioned the etymology of "autistic" earlier. Unfortunately, this idea is the real reason that "auto" is part of "autism."

We were interpreted as being off in our own worlds, not interested in other human beings, and unable to understand them. Nothing could be further from the truth. While not all of us are social butterflies, many of us love being with other people... we're just picky about who those people are.

ABA notably ignores the psychological need of social relatedness, though proponents might not think it does. After all, behavioural therapy often focuses on teaching skills that are meant to help the child integrate into society more easily.

The problem is that the social skills autistic children are taught don't contribute to their sense of belonging (and ABA time often replaces time that should be spent learning with peers). Instead, the skills they are taught serve to highlight their differences and imply that they need to change to fit in. That's the opposite of relatedness.

A solution for achieving social relatedness through education might be to teach autistic children how and why neurotypical children act the way they do... and then teach neurotypical children how and why autistic people act the way we do. There must be effort on both sides. Learning neurotypical communication is a worthy goal for autistics, but children need to be taught in a way that doesn't diminish their own way of communicatin- not by replacing their behaviours with different, more "acceptable" ones.

The vast majority of my long-time friends are neurodivergent themselves. Noting and acknowledging that fact was quite validating for me when I was still pursuing a diagnosis. It seemed so obvious. We recognize each other, and we might not quite understand why, but there is an innate sense of acceptance there.

In James Cameron's " Avatar," the Na'vi people greet each other by saying, "I see you." It's not a physical seeing, but more of a spiritual understanding and acceptance. This is the essence of relatedness: feeling understood, feeling important, feeling loved.

"I see you." © James Cameron's "Avatar"

In conclusion...

Thank you for reading my self-determination theory infodump article. Our (all humans') psychological needs are just as important as our physical needs! If you're feeling mentally unwell, think about how these three needs might play into your state of mind. A small tweak to something to allow for more autonomy, competence, or relatedness might just make a huge difference.

This article is also published at the author's blog, NeuroInsurgent.

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On ABA Therapy, Self-Determination, & Healthy Psychological Development

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How ABA practices fail to meet three critical needs of humans; needs as defined by the self-determination model theory of mental well-being.

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Written by Dr Melanie Heyworth
Why talk about emotional regulation?

Something I hear a great deal about in my work with parents of Autistic children is "emotional regulation". Specifically, parents express how difficult it is for our Autistic children to develop that kind of self-regulation, and how confronting and challenging it is when they struggle to regulate.

I worded that last sentence with particular care.

In many, many cases, I ask parents to understand that what might be "challenging behaviour" for them, is not at all challenging to the young Autistic person for whom they are caring. Stimming is a good example of this concept: it might be challenging to you, as a parent, to have a child who stims verbally, repeating the same sound over and over verbatim with a repetitiveness and invasiveness that is maddening. But it is entirely likely that that stim is the opposite of challenging for your child, providing all manner of soothing and invigorating input to help them navigate their day.

But emotional regulation is different.

Most Autistic children I know (although I am sure there are exceptions to this "rule") do not "want" to lose control. It is not enjoyable, or soothing, or something which we seek or desire.

Emotional regulation is not something at which we want to "fail".

Indeed, the labour of emotional regulation, the futility of that labour when our efforts are foiled, and the loss of regulation and control are both challenging and profoundly unpleasant to most Autistics. So, being unsuccessful in regulating our emotions is as intolerable for Autistics, as it is for those around them. More so, I would argue.

What I am saying is that difficulties with emotional regulation are at least as challenging for your Autistic children, as they are for you.

What is emotional regulation?

But what is emotional regulation? What exactly are we asking our Autistic children to do?

At its core, emotional regulation is about exercising control over our emotional reactions to stimuli. It is a process which allows us to register, analyse, assess, control, and express an emotional response that is considered socially appropriate in the context and circumstances.

Our success (or lack thereof) at emotionally regulating is usually judged by our consequent actions (so our external expression of that regulation). Generally we are judged by whether we have taken an action that is appropriate (as deemed by observers) to the triggering emotion, inhibiting an action that is unacceptable or inappropriate to the triggering emotion, or modulating or tempering our reactions to the triggering emotion.

As you might notice, we tend only to judge emotional regulation by its negative presentation, or its lack.

To be fair, it is difficult to "see" a child (or an adult) modulating or tempering a reaction or inhibiting an action unless they communicate that they are doing so explicitly. Really, we only "see" when they fail in their efforts to reduce or moderate their emotional reaction.

And in this way, emotional regulation is often overlooked when done well, and only noted when done poorly.

Or, in other words, since we can't see emotional regulation at work, we often only draw attention to emotional dysregulation, and ignore any previous efforts to regulate.

Why is emotional regulation so hard?

For the most part, we only explicitly require "emotional regulation" from our children when they have experienced a "big emotion", or a stressor or trigger. We see the emotional wave rising into a veritable tsunami of passion (positive or negative) in our children, and watch as it crashes down on their self-control, sweeping away any remnants of restraint in the torrent of raw reaction to whatever stimuli has caused the event.

Inside your child's brain (and our own for that matter), the flood scene is no less dramatic.

Our amygdalae (we all have two) are those parts of the brain that register a potential threat and act accordingly to prime our physical body for fight or flight. For all children, the amygdalae often interpret what might seem (at least to adults) inconsequential or illogical stimuli as threatening.

As parents, we are often tempted to frame our child's reactions to ostensibly negligible stimuli as an "overreaction" to, or a melodramatic exaggeration of, the stimuli and its potential threat. But our children's amygdalae are not necessarily misinterpreting a threat. They may not be just "getting it wrong".

To the amygdalae, they note the stimuli and the accompanying emotional tide, they assess the "big emotions" as considerable and significant (which they are, to our children), and they (quite literally) flood the brain with stress hormones, like cortisol and adrenaline.

For our Autistic children, the picture is more complex. Research suggests that the amygdalae might have a broader and even more substantial role to play in our Autistic unconscious perception of our social world. During childhood, Autistic children's amygdalae seem to grow faster than non-autistic children's, meaning more neurons firing and a greater likelihood for amygdalae activation (that is, the amygdalae "lighting up" and signalling potential danger). Indeed, studies suggest that Autistic amygdalae's disproportionate stimulation around threat perception may feed into our tendency to experience anxiety disorders.

Now, emotional regulation is easiest to achieve when the frontal lobe region of the brain - the logical and reasonable thinking centre - is active. More specifically, it is likely we (and that is an anybody-type "we", not an Autistic-specific "we") will only be able to manage our emotional reactions and impulses, demonstrate a modicum of self-control, and assess the consequences of our actions, when the prefrontal cortex of our brain is functioning.

But the amygdalae are, in effect, efficient bullies, over which we have little control. They are part of the limbic system of the primordial brain network, which is just a fancy way of saying that they are among the oldest parts of the human brain and work predominantly without our conscious awareness or control. Our amygdalae do not want us to emotionally regulate or to control ourselves. Their job is to ensure we do not relax. We must prepare, physiologically, for any necessary action!

And so, along with the flood of cortisol and adrenaline, the amygdalae shut down the neural pathways to our prefrontal cortex. They black out our access to logical reasoning and to emotional regulation. Emotional regulation is not a choice once the amygdalae are stimulated, because those primitive protective mechanisms ensure that it is not.

As we mature, our prefrontal cortex also matures and learns to negotiate with our amygdalae, logically analysing any perceived threat and giving the amygdalae "stand down" orders before things escalate beyond our control, although the success of that mediation depends on many environmental and contextual factors. But, for Autistic people, the connections between our amygdalae and our prefrontal cortex are weak (or, at least, weaker than the connections in non-autistic brains).

That is to say, over the course of our lives, we learn to regulate our emotions.

But as a species, humans are spectacularly slow to mature, and the prefrontal cortex is the last part of the brain to develop, continuing to learn its place and role in the brain hierarchy well into adulthood. This means that until adulthood and until the prefrontal cortex is fully developed, the amygdalae have an unbalanced influence over our reactions. If the prefrontal cortex is the monarch of the brain, the amygdalae take the place of regent, the appointed governors, until the prefrontal cortex is ready to assume rule.

So, when we ask our children to regulate their emotions, we are, very often, asking them to battle the temporary regent of the brain: we are asking them to fight against the most primitive, instinctive neurological processes, not to mention the plethora of chemicals that our limbic brain has as allies. It is an unfair fight, to say the least.

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Emotional Regulation, Part One: What is it and Why is it so Hard? - Reframing Autism

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Written by Dr Melanie Heyworth Why talk about emotional regulation? Something I hear a great deal about in my work [...]

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Perspectives on why ABA is detrimental to autistics.

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Perspectives on why ABA is detrimental to autistics.

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Inside the UK’s only school for autistic girls

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Autism Documentary: Inside the UK’s only school for autistic girls

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Documentary

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Should I tell my child they're autistic? When is the right time? How do I tell them? These are the questions I hear most often from parents after an autism diagnosis. They are worried about stigma, their child's self-esteem, and the challenges that lie ahead.

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Welcome back to my pontifications! If you haven't read any before (and you really should), I'm a wise, 23-year-old autistic grad student. Since I've successfully completed my undergraduate studies, I've decided that makes me an authority on all things college-related, and I've decided to share my wisdom with you.

Today's Bit of Wisdom is About Studying

Do you, perhaps, study by repeating facts endlessly until you get them right? Do you highlight passages in your textbooks? Do you treat studying as an exercise in trying to memorize a bunch of random bits of trivia? And do you have cramming sessions right before your exams?

If you answered "yes," this post is for you.

That's not how our brains work. For one thing, we don't learn well by cramming. We learn best through distributed practice sessions. We call this the "spacing effect" or the "distributed practice effect," and there's a ton of research to back it up ( Cepeda et al., 2006). It doesn't take more time to study if you start early - you do the same amount of studying in the end - and you remember more. (For more on this, read my post about time management.)

Also, our brains don't learn well through rote memorization of trivia. When we learn things, we remember how they are connected to other things. That means that we will retrieve a fact more easily if we remember how it is connected to other facts. Have you ever struggled to retrieve some fact from memory - something that you know you know, but can't quite grasp? Do you know how, when you're trying to remember, you keep thinking about related facts? That's because you're remembering those connections, trying to retrace them back to the fact you're struggling to retrieve.

That means that learning bits of trivia is a bad idea. When you just have the one fact, isolated and alone, it's harder to retrieve it.

Instead, You Want to Understand the Material

You want to understand why your instructor is teaching it, and how it all fits together. You want to be able to know that Fact A is related to Facts B and C and in what way, so you can trace back those connections. When you encounter each new fact, you want to understand how it fits into the bigger picture of the course.

That Means Using a Different Set of Strategies

Instead of memorizing facts, we want to understand connections .

Try using diagrams - concept maps, or whatever sort of graph works best for you. Or write little passages to summarize big ideas and identify major themes. Or try to think of concrete examples of how concepts can work in the real world. Compare theories. Ask yourself questions about your instructor's intentions. Do whatever you can to develop an integrated, holistic understanding of how everything in the course fits together.

Also, quizzing yourself is always a good idea. Get somebody to ask you questions. And when you give your study partner the answer, don't just give the facts, but try to explain the concepts. There's some research showing that we learn better when we're preparing to teach others (Nestojko et al., 2014), so don't just test whether or not you know the facts: test whether you can teach the material.

Finally, remember to get sleep. I'm wise, so I understand that sleep is important.

Any comments?
Questions about specific strategies?
Do you have other strategies that work well?

References

Cepeda, N. J., Pashler, H., Vul, E., Wixted, J. T., & Rohrer, D. (2006). Distributed practice in verbal recall tasks: A review and quantitative synthesis. Psychological Bulletin, 132(3), 354-380. http://doi.org/10.1037/0033-2909.132.3.354

Nestojko, J. F., Bui, D. C., Kornell, N., & Bjork, E. L. (2014). Expecting to teach enhances learning and organization of knowledge in free recall of text passages. Memory and Cognition, 42(7), 1038-1048. http://doi.org/10.3758/s13421-014-0416-z

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Patrick Pontificates: An Autistic STEM Grad Student on not just Memorizing Facts, but Understanding the Material | Stairway to STEM

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On the importance of understanding the material and not just memorizing facts for autistic college students. Tips and advice from a wise STEM grad student.

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SSI provides monthly payments to people with disabilities and older adults who have little or no income or resources.

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NJ family guide to services for autistic individuals

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NJ family guide to services for autistic individuals

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Freely available,  with scores and norms for the RAADS-R  and CAT-Q

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Welcome to the Aspie tests website. This site hosts a collection of tests related to autism and Asperger's syndrome. Please feel free to try any of the tests.

You are not currently logged in. If you are registered you can log in here or click here to create an account.

Below is a list of the currently available tests:

Did you have any problems with the tests or just want to make a suggestion? Please let me know.

This website and its translations are licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 3.0 Unported License.
The tests on this site are copyright by their respective authors.

Could you help with translation? If so, please get in touch.

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Welcome to the Aspie tests website. This site hosts a collection of tests related to autism and Asperger's syndrome. Please feel free to try any of the tests. You are not currently logged in. If you are registered you can log in here or click here to create an account.

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Free screening instrument, with low sensitivity for high masking, female-gendered 

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Free screening instrument, with low sensitivity for high masking, female-gendered 

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A psychological self-assessment measuring Autism-Spectrum Quotient (AQ for short), which is a measure of the expression of autistic traits in adults.

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This is NOT meant to officially diagnose Sensory Processing Disorder. It should be used ONLY to indicate the "red flags" that may warrant attention; i.e., further observation, evaluation and/or treatment. It can also be used as part of the questionnaire and history gathering process during an evaluation by an OT qualified to diagnose and treat adults with Sensory Processing Disorder.

If you are concerned after going through the checklist that you or your teenager's life may be significantly impacted by sensory processing issues, please contact a local Occupational Therapist. Again, disorder means that it is SIGNIFICANTLY interfering with ones ability to perform daily activities (work, rest, or "play"/leisure)

An open mind may help you see that what appeared to be a "mental health", "behavioral", or "compulsive" behavior or issue may actually be based on inefficient sensory processing. As with any "problem", it will not get better until you know the cause! Treat it for what it actually is... no more "band-aids".

ALL of you will check off several of the items on this checklist, as many of them indicate normal sensory preferences or difficulties. That does NOT mean you have SPD. Look at HOW MANY you have checked off, the AMOUNT OF HIGH NUMBERS you indicated, WHICH SENSORY SYSTEMS are targeted, and HOW MUCH they impact your everyday FUNCTIONING.
Also, keep in mind, many of these symptoms can be indications of other disorders and mental health issues. It is the clusters and intensity of symptoms that we are looking for here, as they apply to, and are based upon sensory stimuli.

Again, if you feel these sensory processing issues are significantly impacting your life (pay attention to FREQUENCY, TIMING, AND DURATION), I urge you to seek a knowledgeable professional for help. AND, if you are really bothered by sensory issues, you may also want to think back to childhood, or earlier years, and fill out the Sensory Processing Disorder Checklist For Kids .

Keep in mind, the more information you can give the evaluator, the more accurate your diagnosis and treatment will be. If concerned, keep journals and bring that, and these checklists to your Doctor, Psychologist, or Occupational Therapist who is familiar with SPD to decide if an evaluation and further treatment is indicated.

Check off the following "behaviors" and sensory preferences if they are a part of YOUR life, and rate how often each applies to you, on a scale of 0-5 ("0" being NEVER, "5" being ALWAYS).

Adolecent / Adult Sensory Processing Disorder Checklist

Sensory Modulation:

__ __ bothered by clothes; certain materials, tags, seams, pantyhose, ties, belts, turtlenecks, have to wear shorts, skirts, or pants exclusively, etc.

__ __ bothered by "light touch"; someone lightly touching/rubbing your hand, face, leg or back

__ __ excessively ticklish

__ __ distressed by others touching you; would rather be the "toucher" than the "touchee", difficulty "snuggling" with your partner

__ __ have to fidget and "fiddle" with things all the time; change in your pocket, your keys, a pen/pencil, paper clip, rubber band, ANYTHING within reach

__ __ often touching and twisting your own hair

__ __ very sensitive to pain, especially as compared to others

__ __ don't seem to notice pain; get shots/cuts/bruises and hardly feel a thing

__ __ dislike the feeling of showers or getting splashed

__ __ difficulty going to the beach; the sand blowing on your skin or getting on your body

__ __ avoid touching anything "messy"; if you do, you have to go wash your hands right away and/or only touch it with your fingertips

__ __ can not wear new or "stiff" clothes that have not been washed or soaked in fabric softener

__ __ hate to be barefoot or hate to wear shoes and/or socks

__ __ frequently get car sick, air sick, motion sick

__ __ a thrill seeker; loves fast and/or dangerous rides, leisure activities, and sports

__ __ difficulty riding on elevators, escalators, or moving sidewalks

__ __ avoid amusement park rides that spin or go upside down

__ __ seek out fast, spinning, and/or upside down carnival rides

__ __ will often rock or sway body back and forth while seated or standing still

__ __ frequently tips chair on back two legs

__ __ restless when sitting through a lecture, presentation, or movie

__ __ constantly chews on ends of pens and pencils

__ __ smokes cigarettes

__ __ difficulty eating foods with mixed textures, or one particular texture

__ __ prefer foods with very strong tastes and flavors

__ __ prefer very bland foods, dislike anything spicy

__ __ has a diagnosed eating disorder or has major eating "sensitivities"

__ __ constantly biting nails or fingers

__ __ bites lips or inside of cheeks

__ __ frequently shake your leg while sitting or falling asleep

__ __ love to sleep with multiple or heavy blankets on top of you

__ __ seek out crashing and "squishing" activities

__ __ cracks knuckles often

__ __ loves crunchy foods (popcorn, carrots, chips, nuts, pretzels, etc.)

__ __ frequently have gum or hard candy in your mouth

__ __ has an "endless" supply of air fresheners, scented candles, odor masking sprays, etc.

__ __ becomes nauseated or gags from certain cooking, cleaning, perfume, public restroom, or bodily odors

__ __ identifies objects by smell, have to smell everything, judge whether you like something or someone by smell

__ __ becomes overstimulated / overaroused when people come to the house or in crowded places

__ __ very high or very low energy level

__ __ avoids crowds and plans errands at times when there will be fewer people

__ __ overly exited/aroused in group settings

__ __ hides or disappears when guests come over

__ __ substance abuse

__ __ drinks excessive amounts of coffee or caffeinated beverages

__ __ notice and bothered by noises other people do not seem bothered by... clocks, refrigerators, fans, people talking, outdoor construction, etc.

__ __ sensitive to loud sounds or commotion

__ __ easily distracted by auditory or visual stimuli

__ __ can not attend certain public events or places due to excessive noise

Sensory Discrimination:

__ __ can't identify objects by feel if your eyes are closed

__ __ difficulty finding things in your purse or pocket without looking

__ __ don't seem to notice if your hands or face are dirty

__ __ bothered by hands or face being dirty

__ __ loves to touch and be touched, has to touch everything

__ __ have a hard time feeling where a bug has bitten you or whether you are being bitten

__ __ difficulty heating food to the correct temperature, feeling if it is too hot or too cold

__ __ difficulty locating items in a cupboard, drawer, in your closet, or on a grocery shelf

__ __ difficulty with recognizing/interpreting/following traffic signs

__ __ difficulty judging distances about where your car is in relation to other cars, in parking spaces, or near a curb (fail miserably at parallel parking!!)

__ __ difficulty merging into oncoming traffic on road, rotary, or highway

__ __ get disoriented and/or lost easily in stores, buildings, hiking, etc.

__ __ can't sleep if room isn't completely dark

__ __ fearful of heights

__ __ difficulty concentrating on or watching a movie/tv show when there is background noise or distractions

__ __ difficulty remembering or understanding what is said to you

__ __ difficulty following directions if given two or three at one time

__ __ can not complete concentrated tasks if noises present

__ __ sensitive, or over reacts, to sirens, dogs barking, vaccuum cleaners, blenders, or other sudden/loud sounds

__ __ talks too loud or too soft

__ __ lethargic, hard to get going, appears "lazy" and unmotivated

__ __ become engrossed in one single activity for a long time and seems to tune out the rest of their environment

__ __ spend hours at a time on fantasy or video games and activities

__ __ great difficulty settling body down for sleep or waking up in the morning (did you even hear the alarm that has been going off for 15 minutes?)

__ __ has difficulty licking an ice cream cone neatly

__ __ difficulty with speech and annunciation

__ __ bumps into things frequently

__ __ often pushes too hard on objects, accidentally breaking them

__ __ difficulty judging how much pressure to apply when doing tasks or picking something up

__ __ difficulty identifying which key on your ring belongs to what

__ __ numbers and letters often reversed or backwards

__ __ difficulty telling time on an analogue clock

__ __ difficulty reading and understanding a map, bus schedule, directions

__ __ difficulty organizing and grouping things by categories, similarities, and/or differences

__ __ can't seem to find words in word search puzzles

__ __ unable to identify foods that have gone bad by smell

__ __ difficulty being able to smell dangerous smells, i.e., smoke, noxious/hazardous solvents

__ __ difficulty being able to smell when something is burning on the stove or in the oven

__ __ difficulty distinguishing different tastes and/or flavors of food and/or drink items

Sensory-Based Motor Skills:

__ __ difficulty learning to ride a bike or other "moving" equipment

__ __ clumsy, uncoordinated, and accident prone

__ __ difficulty walking on uneven surfaces

__ __ difficulty with fine motor tasks such as buttoning, zipping, tying, knitting, sewing, playing games with small parts, closing zip loc bags

__ __ confuses right and left sides

__ __ prefers sedentary tasks, avoiding sports or physical activities

__ __ difficulty with handwriting; hard to read, takes a long time to write

__ __ frequently bumps into people and things

__ __ easily fatigued with physical tasks

__ __ frequently misses when putting objects on a table

__ __ messy eater, difficulty with eating utensils, spills and drops food

__ __ knocks drinks or other things over when reaching for them

__ __ frequently drops items

__ __ has to talk self through tasks

__ __ hums or vocalizes while concentrating on a task

__ __ significant difficulty learning to tie a tie

__ __ difficulty with motor tasks requiring several steps

__ __ difficulty lining up numbers correctly for math problems and/or balancing a checkbook

__ __ difficulty learning new motor tasks...a new dance, sport or exercise activity, how to drive

__ __ lose balance frequently

__ __ significant difficulty learning to type the "proper" way

Social / Emotional:

__ __ dislikes changes in plans or routines, needs structure

__ __ may be described as "stubborn", "defiant", or "uncooperative"

__ __ cries easily, over things others usually don't, very "emotional" and "sensitive"

__ __ can't seem to finish anything

__ __ difficulty making decisions

__ __ rigid and controlling

__ __ prefers solitary activities, avoids groups

__ __ impatient and/or impulsive

__ __ difficulty with social cues and non verbal language

__ __ difficulty with authority figures

__ __ trouble relating to and socializing with peers and colleagues

__ __ a "sore loser"

__ __ strong feelings of anger or rage

__ __ easily frustrated

__ __ needs sameness and routines; needs to know what to expect

__ __ have panic or anxiety attacks

__ __ plagued by fears and/or phobias

__ __ OCD-type qualities; can't let foods touch each other on your plate, have to wear clothes a certain way, will only do ____, repetitively does ____, can not do _____ without doing _____, has to have ____ like ____

__ __ distractible and unorganized

__ __ hates surprises

__ __ difficulty seeking out and maintaining relationships

Internal Regulation:

__ __ difficulty falling asleep or getting on a sleep schedule

__ __ heart rate speeds up, and won't slow down when at rest, or won't speed up for tasks that require a higher heart rate

__ __ respiration too fast or slow for the appropriate state of arousal

__ __ over or under sensitivity to bowel and bladder sensations

__ __ over or under sensitivity to the sensation of hunger/appetite

__ __ irregular, inconsistent bowel, bladder and appetite sensations

__ __ difficulty with temperature regulation of body

Related Resources and Further Reading

Adult SPD: Signs, Symptoms, and Treatment

Sensory Processing Disorder Checklist - comprehensive SPD Checklist; signs and symptoms of tactile, auditory, olfactory and oral defensiveness, as well as proprioceptive and vestibular dysfunction.

Child Developmental Checklist - Use this child developmental checklist for children ages 0-3 to find out whether your child is in need of an early intervention/developmental therapy referral.

SPD Symptom Checklist For Infants And Toddlers - Signs and symptoms of sensory processing disorder for babies is here with the SPD symptom checklist for infants and toddlers.

Do You Have An Adult SPD Story To Share?

If you are dealing with Sensory Processing Disorder as an adult, then share your experience, ideas, struggles, questions and solutions you have discovered with the readers of Sensory-Processing-Disorder.com

What Other Visitors Of Sensory-Processing-Disorder Have Said

Click below to see contributions from other visitors to this page...

Leave Adult SPD Checklist And Return To Sensory Processing Disorder Resource Center Home Page

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Find out signs and symptoms of Sensory Processing Disorder with the adolescent and adult SPD checklist.

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essays from a diverse group of adult-diagnosed autistic people

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essays from a diverse group of adult-diagnosed autistic people

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Knowing Why: Adult-Diagnosed Autistic People on Life and Autism

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Standalone book in the Nonfiction genre. Available from Amazon, Amazon Kindle, Barnes and Noble, Books A Million, Indie Bound. What happens when you make it to adulthood before finding out you're autistic? As A.J. Odasso writes in this anthology: "...

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Autism is under-diagnosed in female-gendered people - Insights of a Neurodivergent Clinician

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Women are less likely to be diagnosed AND more vulnerable to several risks associated with autism. These risks are magnified for those with additional marginalized identities. ⁠ Women are less likely to be diagnosed with autism and yet have more co-occurring risks associated with autism than cisgender men. It's a bad equation!

Why Are We Missing Autistic Women?

A recent study suggests we are missing autistic girls at alarming rates. While the often-cited male-to-female autism ratio of 4:1, McCrossin's (2022) mathematical projections, which take into consideration diagnostic bias, suggest the true male-to-female ratio is 3:4 with 80% of autistic girls remaining undiagnosed by the age of 18.

Special Interests Culturally Blend In

Women and girls are more likely to go undetected as their special interests are more likely to culturally blend in as they may be interested in humanitarianism, religion, animals, people, pop culture (bands, popular movies etc.) ( Hull et al., 2020). They are also less likely to present with the same social-communication differences and more likely to mask their differences and socially blend in (although they often experience relationship difficulties which make maintaining friendships difficult ( Hull et al., 2020).

Brain Differences in Autistic Females

Emergent research also suggests that autism impacts different regions of the brain. Supekar et al., 2022 have observed sex-specific brain differences present between autistic females and males.

Girls are more likely to experience impact in regions of the brain that affect fine motor skills, executive functioning, and emotional regulation, while they often show less social-communication differences (Cauvet et al., 2020; Jack et al., 2021; Supekar et al., 2022).

Below is a write-up of the challenges many of us experience. followed by the various risk factors associated with Autism in women (*see note at the end of the article for language and gender use). While articles referenced here don't look at trans/BIPOC (a few include non-binary/genderqueer), we know from other studies these risks are even higher among BIPOC & Trans people.

Far more boys than girls are diagnosed with Autism. While it used to be believed this was because it impacted boys at higher rates, emerging research is pointing to the fact that this may be due to the fact it is missed more often in girls. A recent study suggested that 80% of Autistic women remain undiagnosed at the age of 18.

Behavioral and Neuroimaging studies show that Autism manifests differently in girls. Notably, female social brains are often closer to NT boys' social brains (and their social abilities are similar to NT boys). ( Szalavitz, 2016).

There is substantial evidence that the diagnostic processes are less likely to identify women, particularly in the absence of a co-occurring intellectual disability. Females with average to high IQs are particularly unlikely to receive a diagnosis of autism ( Hull et al., 2020)

To receive a diagnosis, girls must be more significantly impacted by their traits Hull et al., 2020).

Based on twin studies, girls, on average, had to have more externalization behaviors and more intellectual disabilities than boys to receive a diagnosis of autism ( Szalavitz, 2016).

Females fortunate enough to receive a diagnosis are, on average, diagnosed much later in life than males ( Hull et al., 2020).

A fundamental issue with the current diagnostic methods is that the behavioral markers used as criteria are established on pre-existing conceptions of what autistic behaviors look like. These criteria have been developed based on the predominantly white male populations previously identified as autistic. Autistic girls are less likely to meet these criteria even when clinically significant characteristics are identified. This often results in diagnoses of broader developmental disorders or internalization disorders rather than Autism specifically ( Hull et al., 2020)

Autistic women and girls are more likely to experience more sensory issues related to Autism and will often present with less of the typical "social-communication" deficits ( Moseley et al, 2018).

While we are less likely to receive a diagnosis, we are more likely to have complications and risks associated with our Autism. That means we have a decreased ability to receive support and an increased risk of complications. This equation is not a good look. We have increased health, social, and mental health risks. Below is a summary of some of our risk factors:

Health Issues in Autistic Women

Autistic Women are more likely than their Neurotypical peers and autistic cis men to experience health issues. Without an autism diagnosis, it is more likely physical ailments will be minimized/dismissed or untreated. Health issues that are more prevalent among Autistic women include:

Additionally, Autistic folks have an increased risk of:

It is recommended by Kassee, 2020 that physicians regularly monitor and assess Autistic women for health issues. However, without an autism diagnosis, this is less likely to happen, and their medical team won't know the importance of monitoring their systems.

Furthermore, many Autistic women may look like "healthy, young women" on the outside and therefore have their symptoms dismissed as "healthy anxiety." A diagnosis helps a person's medical team understand their physical vulnerabilities and helps a person advocate for their health.

Sensory and Physical Ailments in Autistic Women

Beyond the health risks listed above, many Autistic women people experience some form of chronic fatigue, migraines, and other physical ailments. Many have come to be treated as "hypochondriacs," or symptoms may have been interpreted as "psychosomatic."

Internalization Symptoms of Autistic Women

When we experience emotional pain, we typically do one of two things with it: 1) Turn it inward (internalization) or turn it outward (externalization).

Symptoms can either be internalized (turned inward) or externalized (turned outward). Examples of externalized behaviors are conduct disorders and angry outbursts. Depression and anxiety are more commonly turned inward and considered internalization of the pain.

Depression and anxiety are both considered internalizing problems common among Autism. Autistic girls and women are more likely to internalize symptoms, whereas boys are more likely to externalize (aggression, behavior difficulties, etc.). Notably, research demonstrates that the efforts that go into camouflaging can result in increased stress, anxiety, and depression ( Hull et al., 2020).

Disordered Eating

Segewick et al., 2021 found that Autistic people were 2x as likely as non-autistic people to have an eating disorder. Disordered eating is a common form of internalization among Autistic women.

One study found that 70% of women in an inpatient eating disorder clinic had undiagnosed autism. While the rates vary, most researchers agree that about 23% of people diagnosed with anorexia nervosa are Autistic ( Wentz et al., 2005). However, many agree that this is likely an underrepresentation because autism often goes undiagnosed within this population ( Westwood and Tchanturia). For more about the similarities in between anorexia and autism, see The Invisible Line between Autism and anorexia (Arnold, 2016).

Victimization/Intimate Partner Violence and PTSD

Autistic women are more likely to be survivors of violent victimization. In one study, Autistic adults were 7.3 times more likely to endorse having experienced sexual assault from a peer during adolescence ( Weiss and Fardella).

Some risk factors include:

challenges in social reasoning (not knowing when someone is taking advantage of us)

missing contextual cues (also makes it difficult to know when someone is trying to manipulate us)

a tendency to take things literally

These risks are highest among women and genderqueer people. Reuben et al., 2021 study included 687 self-identified Autistic people. They looked at interpersonal trauma and PTSD. Below is a summary of their findings:

72% of participants reported experiencing sexual assault, other unwanted or uncomfortable sexual experiences, or physical assault.

44% percent of participants met the criteria for posttraumatic stress disorder (PTSD),

50% of those who met the criteria for PTSD reported experiencing interpersonal traumas (IPT)

Autistic women and genderqueer people experienced a significantly higher number of traumas and were significantly more likely than cis-men to experience sexual intimate partner violence and meet the criteria for PTSD.

Haruvi-Lamdan et al., 2020 found that autistic females reported more negative social life events than autistic men and had a higher likelihood of PTSD. Their researchers suggested Autistic women are at an increased risk of developing PTSD.

Suicide Risk for Autistic Women

A recent longitudinal study involving 6.5 million people found that autistics were 3x more likely to both attempt suicide and to die by suicide. Suicidality was particularly high among youth and young adults. They also found suicide risk was more elevated among women than men. Women on the spectrum are at a higher risk than both men on the spectrum and neurotypical females ( South et al.)

One large study found that while Autistic men were 6.5 times more likely to die by suicide, Autistic women were 13 times more likely to die by suicide! ( Hirvikosi et al., 2018). Autistic women are silently suffering while going missed and misdiagnosed at alarming rates.

Co-occurring Mood Disorders in Autistic Women

It is well documented that autistic people are more likely to have mood disorders (anxiety and depression) than allistic people. This is true across all genders. However, Autistic women and non-binary people had higher rates of depression and anxiety than men (and had similar rates to each other) ( Segewick et al., 2021).

In summary, we are less likely to have social communication difficulties but more likely to have depression, anxiety, eating disorders, co-occurring health disorders, more debilitating sensory sensitivities, suicidality, self-harm, victimization, and PTSD.

Given the heightened emphasis on social-communication aspects of Autism, some may be skeptical of a person seeking diagnosis when they can "pass" as neurotypical. But there is so much more to Autism than social-communication patterns.

It's time we rethink Autism presentations and diagnose and support all presentations. Accurate diagnoses and supports save lives.

Future Resources for Autistic Women

Intrigued about Autism and women? Below are a few of my favorite books that highlight the experience of autism and girls (affiliate links).

Divergent Minds: This book covers many different forms of neurodivergence, including Autism. The author does a good job of capturing the intersection of female identity and neurodivergence. This was one of the first books I read on my Autism self-discovery journey. Great for women who are self-discovered/diagnosed in mid-life.

Aspergirls: A great guide for girls, their families, and counselors looking to understand autism and girls. This book is written by an autistic girl and draws on her experience and 35 other Autistic women she interviewed. Would be a great handbook/guide for younger people new to diagnosis (and great for their parents).

The Awesome Autistic Go-To Guide: Written for teens and tweens. Not specifically for girls, but does a great job of including inclusive messages on autism. I appreciated how they naturally wove in gender and sexual diversity (given the high percentage of AFAB who are genderqueer, lesbian, or bisexual this is a must inclusion).

This podcast with Dr. Donna Henderson walks through the DSM-5 criteria for autism through the lens of girls and women.

Notes:
**A note about Gender Phenotypes: I find it more helpful to talk about different presentation styles. Some of the information below draws from this gendered way of seeing Autism. It is important to note, anyone (women, genderqueer, trans, men) can present with "masculine" presentations, and anyone can present with more "female" presentations of Autism (I know plenty white, cisgender men who present with so-called "female" autism). I hope this next wave of autism awareness will help us find language to articulate the different presentations of Autism in a way that moves beyond the gender binary. Over the last several years, increasing attention has been given to the "Female Autism Phenotype." I have found this very helpful for understanding my experience and am grateful for the attention finally being given to diverse expressions of Autism. At the same time, this language risks continuing to gender autism.

***A Note About Gender language: When possible, I try to find research that includes genderqueer people (especially given the high percentage of genderqueer people within the Autistic community, however, most research is still done on the binary, which is one of the research biases that impacts genderqueer people. Original article and infographic included AFAB and women. However, after learning more from the Trans community, I recognized the problematic nature of conflating these two concepts. So while many of the medical experiences described above will also apply to AFAB genderqueer people, I have opted to separate out these conversations. Y ou can read more specific experiences about Trans Autistic experiences over here in this infographic.

Citations:
Arnold, Carrie. 2016. The Invisible link between autism and anorexia. Spectrum News. Retrieved at: https://www.spectrumnews.org/features/deep-dive/the-invisible-link-between-autism-and-anorexia/

Freeman, A., Mergl, R., Kohls, E. et al. A cross-national study on gender differences in suicide intent. BMC Psychiatry 17, 234 (2017). https://doi.org/10.1186/s12888-017-1398-8

Haruvi-Lamdan, N., Horesh, D., Zohar, S., Kraus, M., & Golan, O. (2020). Autism Spectrum Disorder and Post-Traumatic Stress Disorder: An unexplored co-occurrence of conditions. Autism, 24(4), 884-898. https://doi.org/10.1177/1362361320912143

Hull, L., Petrides, K.V. & Mandy, W. The Female Autism Phenotype and Camouflaging: a Narrative Review. Rev J Autism Dev Disord 7, 306-317 (2020). https://doi.org/10.1007/s40489-020-00197-9

Kassee, C., Babinski, S., Tint, A. et al. Physical health of autistic girls and women: a scoping review. Molecular Autism 11, 84 (2020). https://doi.org/10.1186/s13229-020-00380-z

Moseley, R.L., Hitchiner, R. & Kirkby, J.A. 2018. Self-reported sex differences in high-functioning adults with autism: a meta-analysis. Molecular Autism 9, 33. https://doi.org/10.1186/s13229-018-0216-6

Reuben, K., Stanzione, C.M, and Singleton, J.L., Autism in Adulthood. Sep 2021.247-256. http://doi.org/10.1089/aut.2020.0073

Sedgewick, F., Leppanen, J. and Tchanturia, K. (2021), "Gender differences in mental health prevalence in autism", Advances in Autism, Vol. 7 No. 3, pp. 208-224. https://doi.org/10.1108/AIA-01-2020-0007

Szalavitz, Maia, 2016. Autism-It's Different in Girls. Scientific American. Retrieved At: https://www.scientificamerican.com/article/autism-it-s-different-in-girls/

Weiss, J. A., & Fardella, M. A. (2018). Victimization and Perpetration Experiences of Adults With Autism. Frontiers in psychiatry, 9, 203. https://doi.org/10.3389/fpsyt.2018.00203

Wentz, E., Lacey, J. H., Waller, G., Råstam, M., Turk, J., & Gillberg, C. (2005). Childhood onset neuropsychiatric disorders in adult eating disorder patients. A pilot study. European child & adolescent psychiatry, 14(8), 431-437. https://doi.org/10.1007/s00787-005-0494-3

Women are less likely to be diagnosed AND more vulnerable to several risks associated with autism. These risks are magnified for those with additional marginalized identities. ⁠ Women are less likely to be diagnosed with autism and yet have more co-occurring risks associated with autism than cisgender men. It's a bad equation!

Why Are We Missing Autistic Women?

A recent study suggests we are missing autistic girls at alarming rates. While the often-cited male-to-female autism ratio of 4:1, McCrossin's (2022) mathematical projections, which take into consideration diagnostic bias, suggest the true male-to-female ratio is 3:4 with 80% of autistic girls remaining undiagnosed by the age of 18.

Special Interests Culturally Blend In

Women and girls are more likely to go undetected as their special interests are more likely to culturally blend in as they may be interested in humanitarianism, religion, animals, people, pop culture (bands, popular movies etc.) ( Hull et al., 2020). They are also less likely to present with the same social-communication differences and more likely to mask their differences and socially blend in (although they often experience relationship difficulties which make maintaining friendships difficult ( Hull et al., 2020).

Brain Differences in Autistic Females

Emergent research also suggests that autism impacts different regions of the brain. Supekar et al., 2022 have observed sex-specific brain differences present between autistic females and males.

Girls are more likely to experience impact in regions of the brain that affect fine motor skills, executive functioning, and emotional regulation, while they often show less social-communication differences (Cauvet et al., 2020; Jack et al., 2021; Supekar et al., 2022).

Below is a write-up of the challenges many of us experience. followed by the various risk factors associated with Autism in women (*see note at the end of the article for language and gender use). While articles referenced here don't look at trans/BIPOC (a few include non-binary/genderqueer), we know from other studies these risks are even higher among BIPOC & Trans people.

Far more boys than girls are diagnosed with Autism. While it used to be believed this was because it impacted boys at higher rates, emerging research is pointing to the fact that this may be due to the fact it is missed more often in girls. A recent study suggested that 80% of Autistic women remain undiagnosed at the age of 18.

Behavioral and Neuroimaging studies show that Autism manifests differently in girls. Notably, female social brains are often closer to NT boys' social brains (and their social abilities are similar to NT boys). ( Szalavitz, 2016).

There is substantial evidence that the diagnostic processes are less likely to identify women, particularly in the absence of a co-occurring intellectual disability. Females with average to high IQs are particularly unlikely to receive a diagnosis of autism ( Hull et al., 2020)

To receive a diagnosis, girls must be more significantly impacted by their traits Hull et al., 2020).

Based on twin studies, girls, on average, had to have more externalization behaviors and more intellectual disabilities than boys to receive a diagnosis of autism ( Szalavitz, 2016).

Females fortunate enough to receive a diagnosis are, on average, diagnosed much later in life than males ( Hull et al., 2020).

A fundamental issue with the current diagnostic methods is that the behavioral markers used as criteria are established on pre-existing conceptions of what autistic behaviors look like. These criteria have been developed based on the predominantly white male populations previously identified as autistic. Autistic girls are less likely to meet these criteria even when clinically significant characteristics are identified. This often results in diagnoses of broader developmental disorders or internalization disorders rather than Autism specifically ( Hull et al., 2020)

Autistic women and girls are more likely to experience more sensory issues related to Autism and will often present with less of the typical "social-communication" deficits ( Moseley et al, 2018).

While we are less likely to receive a diagnosis, we are more likely to have complications and risks associated with our Autism. That means we have a decreased ability to receive support and an increased risk of complications. This equation is not a good look. We have increased health, social, and mental health risks. Below is a summary of some of our risk factors:

Health Issues in Autistic Women

Autistic Women are more likely than their Neurotypical peers and autistic cis men to experience health issues. Without an autism diagnosis, it is more likely physical ailments will be minimized/dismissed or untreated. Health issues that are more prevalent among Autistic women include:

Additionally, Autistic folks have an increased risk of:

It is recommended by Kassee, 2020 that physicians regularly monitor and assess Autistic women for health issues. However, without an autism diagnosis, this is less likely to happen, and their medical team won't know the importance of monitoring their systems.

Furthermore, many Autistic women may look like "healthy, young women" on the outside and therefore have their symptoms dismissed as "healthy anxiety." A diagnosis helps a person's medical team understand their physical vulnerabilities and helps a person advocate for their health.

Sensory and Physical Ailments in Autistic Women

Beyond the health risks listed above, many Autistic women people experience some form of chronic fatigue, migraines, and other physical ailments. Many have come to be treated as "hypochondriacs," or symptoms may have been interpreted as "psychosomatic."

Internalization Symptoms of Autistic Women

When we experience emotional pain, we typically do one of two things with it: 1) Turn it inward (internalization) or turn it outward (externalization).

Symptoms can either be internalized (turned inward) or externalized (turned outward). Examples of externalized behaviors are conduct disorders and angry outbursts. Depression and anxiety are more commonly turned inward and considered internalization of the pain.

Depression and anxiety are both considered internalizing problems common among Autism. Autistic girls and women are more likely to internalize symptoms, whereas boys are more likely to externalize (aggression, behavior difficulties, etc.). Notably, research demonstrates that the efforts that go into camouflaging can result in increased stress, anxiety, and depression ( Hull et al., 2020).

Disordered Eating

Segewick et al., 2021 found that Autistic people were 2x as likely as non-autistic people to have an eating disorder. Disordered eating is a common form of internalization among Autistic women.

One study found that 70% of women in an inpatient eating disorder clinic had undiagnosed autism. While the rates vary, most researchers agree that about 23% of people diagnosed with anorexia nervosa are Autistic ( Wentz et al., 2005). However, many agree that this is likely an underrepresentation because autism often goes undiagnosed within this population ( Westwood and Tchanturia). For more about the similarities in between anorexia and autism, see The Invisible Line between Autism and anorexia (Arnold, 2016).

Victimization/Intimate Partner Violence and PTSD

Autistic women are more likely to be survivors of violent victimization. In one study, Autistic adults were 7.3 times more likely to endorse having experienced sexual assault from a peer during adolescence ( Weiss and Fardella).

Some risk factors include:

challenges in social reasoning (not knowing when someone is taking advantage of us)

missing contextual cues (also makes it difficult to know when someone is trying to manipulate us)

a tendency to take things literally

These risks are highest among women and genderqueer people. Reuben et al., 2021 study included 687 self-identified Autistic people. They looked at interpersonal trauma and PTSD. Below is a summary of their findings:

72% of participants reported experiencing sexual assault, other unwanted or uncomfortable sexual experiences, or physical assault.

44% percent of participants met the criteria for posttraumatic stress disorder (PTSD),

50% of those who met the criteria for PTSD reported experiencing interpersonal traumas (IPT)

Autistic women and genderqueer people experienced a significantly higher number of traumas and were significantly more likely than cis-men to experience sexual intimate partner violence and meet the criteria for PTSD.

Haruvi-Lamdan et al., 2020 found that autistic females reported more negative social life events than autistic men and had a higher likelihood of PTSD. Their researchers suggested Autistic women are at an increased risk of developing PTSD.

Suicide Risk for Autistic Women

A recent longitudinal study involving 6.5 million people found that autistics were 3x more likely to both attempt suicide and to die by suicide. Suicidality was particularly high among youth and young adults. They also found suicide risk was more elevated among women than men. Women on the spectrum are at a higher risk than both men on the spectrum and neurotypical females ( South et al.)

One large study found that while Autistic men were 6.5 times more likely to die by suicide, Autistic women were 13 times more likely to die by suicide! ( Hirvikosi et al., 2018). Autistic women are silently suffering while going missed and misdiagnosed at alarming rates.

Co-occurring Mood Disorders in Autistic Women

It is well documented that autistic people are more likely to have mood disorders (anxiety and depression) than allistic people. This is true across all genders. However, Autistic women and non-binary people had higher rates of depression and anxiety than men (and had similar rates to each other) ( Segewick et al., 2021).

In summary, we are less likely to have social communication difficulties but more likely to have depression, anxiety, eating disorders, co-occurring health disorders, more debilitating sensory sensitivities, suicidality, self-harm, victimization, and PTSD.

Given the heightened emphasis on social-communication aspects of Autism, some may be skeptical of a person seeking diagnosis when they can "pass" as neurotypical. But there is so much more to Autism than social-communication patterns.

It's time we rethink Autism presentations and diagnose and support all presentations. Accurate diagnoses and supports save lives.

Future Resources for Autistic Women

Intrigued about Autism and women? Below are a few of my favorite books that highlight the experience of autism and girls (affiliate links).

Divergent Minds: This book covers many different forms of neurodivergence, including Autism. The author does a good job of capturing the intersection of female identity and neurodivergence. This was one of the first books I read on my Autism self-discovery journey. Great for women who are self-discovered/diagnosed in mid-life.

Aspergirls: A great guide for girls, their families, and counselors looking to understand autism and girls. This book is written by an autistic girl and draws on her experience and 35 other Autistic women she interviewed. Would be a great handbook/guide for younger people new to diagnosis (and great for their parents).

The Awesome Autistic Go-To Guide: Written for teens and tweens. Not specifically for girls, but does a great job of including inclusive messages on autism. I appreciated how they naturally wove in gender and sexual diversity (given the high percentage of AFAB who are genderqueer, lesbian, or bisexual this is a must inclusion).

This podcast with Dr. Donna Henderson walks through the DSM-5 criteria for autism through the lens of girls and women.

Notes:
**A note about Gender Phenotypes: I find it more helpful to talk about different presentation styles. Some of the information below draws from this gendered way of seeing Autism. It is important to note, anyone (women, genderqueer, trans, men) can present with "masculine" presentations, and anyone can present with more "female" presentations of Autism (I know plenty white, cisgender men who present with so-called "female" autism). I hope this next wave of autism awareness will help us find language to articulate the different presentations of Autism in a way that moves beyond the gender binary. Over the last several years, increasing attention has been given to the "Female Autism Phenotype." I have found this very helpful for understanding my experience and am grateful for the attention finally being given to diverse expressions of Autism. At the same time, this language risks continuing to gender autism.

***A Note About Gender language: When possible, I try to find research that includes genderqueer people (especially given the high percentage of genderqueer people within the Autistic community, however, most research is still done on the binary, which is one of the research biases that impacts genderqueer people. Original article and infographic included AFAB and women. However, after learning more from the Trans community, I recognized the problematic nature of conflating these two concepts. So while many of the medical experiences described above will also apply to AFAB genderqueer people, I have opted to separate out these conversations. Y ou can read more specific experiences about Trans Autistic experiences over here in this infographic.

Citations:
Arnold, Carrie. 2016. The Invisible link between autism and anorexia. Spectrum News. Retrieved at: https://www.spectrumnews.org/features/deep-dive/the-invisible-link-between-autism-and-anorexia/

Freeman, A., Mergl, R., Kohls, E. et al. A cross-national study on gender differences in suicide intent. BMC Psychiatry 17, 234 (2017). https://doi.org/10.1186/s12888-017-1398-8

Haruvi-Lamdan, N., Horesh, D., Zohar, S., Kraus, M., & Golan, O. (2020). Autism Spectrum Disorder and Post-Traumatic Stress Disorder: An unexplored co-occurrence of conditions. Autism, 24(4), 884-898. https://doi.org/10.1177/1362361320912143

Hull, L., Petrides, K.V. & Mandy, W. The Female Autism Phenotype and Camouflaging: a Narrative Review. Rev J Autism Dev Disord 7, 306-317 (2020). https://doi.org/10.1007/s40489-020-00197-9

Kassee, C., Babinski, S., Tint, A. et al. Physical health of autistic girls and women: a scoping review. Molecular Autism 11, 84 (2020). https://doi.org/10.1186/s13229-020-00380-z

Moseley, R.L., Hitchiner, R. & Kirkby, J.A. 2018. Self-reported sex differences in high-functioning adults with autism: a meta-analysis. Molecular Autism 9, 33. https://doi.org/10.1186/s13229-018-0216-6

Reuben, K., Stanzione, C.M, and Singleton, J.L., Autism in Adulthood. Sep 2021.247-256. http://doi.org/10.1089/aut.2020.0073

Sedgewick, F., Leppanen, J. and Tchanturia, K. (2021), "Gender differences in mental health prevalence in autism", Advances in Autism, Vol. 7 No. 3, pp. 208-224. https://doi.org/10.1108/AIA-01-2020-0007

Szalavitz, Maia, 2016. Autism-It's Different in Girls. Scientific American. Retrieved At: https://www.scientificamerican.com/article/autism-it-s-different-in-girls/

Weiss, J. A., & Fardella, M. A. (2018). Victimization and Perpetration Experiences of Adults With Autism. Frontiers in psychiatry, 9, 203. https://doi.org/10.3389/fpsyt.2018.00203

Wentz, E., Lacey, J. H., Waller, G., Råstam, M., Turk, J., & Gillberg, C. (2005). Childhood onset neuropsychiatric disorders in adult eating disorder patients. A pilot study. European child & adolescent psychiatry, 14(8), 431-437. https://doi.org/10.1007/s00787-005-0494-3

# data[].attributes.attachment_link.description
Women and AFAB people are less likely to be diagnosed with autism and yet have more co-occurring risks associated with autism than cisgender men. 1 in 54 children are diagnosed with Autism. And boys are 4 x more likely to be diagnosed than girls.

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OutSchool social groups, such as this one offered by this lovely autist! 

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OutSchool social groups, such as this one offered by this lovely autist! 

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About me

My name is Gabrielle, I started teaching sewing lessons when I was a homeschool senior. I taught classes at a local home school group and discovered I had a passion for teaching. When I was 19 I discovered I was most likely autistic and was able to get an official diagnosis at 21. For me, this was a revelation and explained so much. It meant I was able to seek out others like me and was a huge... Show More...

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Gabrielle Hughes - Autistic Advocate - Outschool Teacher

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I am an autistic advocate who leads social groups for autistic children and teens as well as teaching classes about autism and sensory needs and inclusive fun classes. | 12 upcoming classes | 117 classes available by request

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The Autism Spectrum According to Autistic People

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The Autism Spectrum According to Autistic People

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Ingredients for slowing down to the relational speed of life and cooking up de-powered social operating models. Many Autists realise that the best we can ever hope for in this hypernormative civilisation is acceptance of our existence in bare survival mode, performing the function of a mindless busy cog and consumer in the sensory hell of the industrial machine.

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Content about autism by autistic and neurodivergent people. A resource for autistic adults, parents of autistic children, educators, and physicians.

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100-ish Books on Autism and Neurodiversity

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If you're looking for books on autism and neurodiversity, there are plenty to choose from! You can consider these titles vetted by a large group of autistic adults and allies.

CLICK HERE if you're only searching for inclusive children's books.

CLICK HERE if you're only searching for books for teens, tweens, and adolescents.

CLICK HERE if you're an adult exploring your own autistic identity.

We've been compiling this book list for over a year in That Au-Some Book Club. All of the titles have been discussed and approved by our autistic members and allies.

It's important to remember that there are no perfect books. All books on autism and neurodiversity come with several trigger warnings. Some may contain person-first language, while others may include internalized ableism.

There are a few categories. Other than that, these books are in no particular order. At the bottom, I've linked to other great lists I've come across.

Consider this a working document. It is in no way complete, and I'll be adding to it continuously. Feel free to leave a comment with your suggestions! Happy Reading!
This post contains links to Amazon and I earn a small commission from the orders. This helps support my book club habit! Titles available on Audible are identified.
Looking for autistic authors only?

Listing with a (*) indicate the author identifies as autistic or that the book has autistic contributors.

Listings without a(*) indicate either the author's neurology is unknown, or the author is allistic (not autistic).

Some titles show that the author is ND (neurodivergent). Some authors choose not to share their neurology with the public.

A List To Get You Started

Loud Hands: Autistic People Speaking (Anthology) Julia Bascom*

Ido in Autismland by Ido Kedar*

It's An Autism Thing, I'll Help You Understand It by Emma Dalmayne*

Anatomy of Autism: A Pocket Guide for Educators, Parents, and Students by Diego Pena*

Leaders Around Me: Autobiographies of Autistics who Type, Point, and Spell to Communicate ed by Edlyn Vallejo Peña, PhD*

All the Weight of Our Dreams: On Living Racialized Autism edited by Lydia X Z Brown et al. (By autistic women of color)* We are awaiting a new edition to this book.

Typed Words Loud Voices edited by Amy Sequenzia & Elizabeth J. Grace *

Books by Nonspeaking Authors - AAC, RPM, FC

I Never Get Lost In the Woods by Aaron Jepson* (novel) *New Release!*

Ido in Autismland by Ido Kedar *

In Two Worlds by Ido Kedar (fiction) *

Typed Words Loud Voices edited by Amy Sequenzia & Elizabeth J. Grace*

What's J Say: A Collection of Poems by Justice Killebrew*

May Tomorrow Be Awake: On Poetry, Autism, and Our Neurodiverse Future by Chris Martin

Back from the Brink: Stories of Resilience, Reconciliation, and Reconnection by Tim Chan and Sarah Chan*

Communication Alternatives in Autism: Perspectives on Typing and Spelling Approaches...by Edlyn Vallejo Peña*

Autistic & Awesome: A Journal From the Inside by Alfonso Camacho*

Anatomy of Autism: A Pocket Guide for Educators, Parents, and Students by Diego Peña*

Leaders Around Me: Autobiographies of Autistics who Type, Point, and Spell to Communicate edited by Edlyn Vallejo Peña, PhD*

Books For Parents and Educators

I Will Die On This Hill: Autistic Adults, Autism Parents, and the Children Who Deserve a Better World by Jules Edwards, Meghan Ashburn, et al. Illustrated by Nathan McConnell*

Your Child Is Not Broken by Heidi Mavir*

Low Demand Parenting by Amanda Diekman*

Autism in Childhood: for Parents and Carers of the Newly Diagnosed by Luke Beardon (ND Author)

Learning from Autistic Teachers: How to Be a Neurodiversity-inclusive School by Dr. Rebecca Wood et al. (anthology)*

We've Got This: Stories by disabled Parents by Eliza Hull*

Sensational Kids: Hope and Help for Children with Sensor y Processing Disorder by Lucy Jane Miller

The Real Experts: Readings for Parents of Autistic Children, ed. Michelle Sutton *

Avoiding Anxiety in Autistic Children: A Guide for Autistic Wellbeing by Dr. Luke Beardon (ND Author)

Inclusive Education for Autistic Children by Dr. Rebecca Wood

Supporting Autistic Girls and Gender Diverse Youth by Yellow Ladybugs

The Parents' Practical Guide to Resilience for Children aged 2-10 on the Autism Spectrum by Yenn Purkis and Emma Goodall*

Just Give Him the Whale! 20 Ways to Use Fascinations, Areas of Expertise, and Strengths to Support Students with Autism by Paula Kluth & Patrick Schwarz

15 Minute Focus: Regulation and Coregulation: Accessible Neuroscience and Connection Strategies that Bring Calm Into the Classroom by Ginger Healy

It's An Autism Thing, I'll Help You Understand It by Emma Dalmayne *

Leaders Around Me: Autobiographies of Autistics who Type, Point, and Spell to Communicate edited by Edlyn Vallejo Peña, PhD *

Empowering Students with Hidden Disabilities: A Path to Pride and Success by Margo Izzo and LeDerick Horne (ND Authors)

May Tomorrow Be Awake: On Poetry, Autism, and Our Neurodiverse Future by Chris Martin*

Underrepresented Genders

Drama Queen: One Autistic Woman and a Life of Unhelpful Labels by Sara Gibbs

Letters to My Weird Sisters: On Autism and Feminism by Joanne Limburg *

Why Are the Lights So Loud? Stories About Being an Adult Female with Aspergers by Heather Chase *

The Edge of the Playground: Two Stories One Journey by Mary Lynn Ackerman Willis and Mikaela Ackerman *

Have Geek, Will Travel by Rebecca Blevins (novel) *

Exposure Anxiety - The Invisible Cage: An Exploration of Self-Protection Responses in the Autism Spectrum and Beyond by Donna Williams

Women on the Spectrum: A Handbook for Life by Emma Goodall and Yenn Purkis *

Spectrum Women: Walking to the Beat of Autism by Barb Cook (Editor), Michelle Garnett (Editor), Jen Elcheson (Contributor) *

Nobody Nowhere: The Remarkable Autobiography of An Autistic Girl by Donna Williams *

Somebody Somewhere: Breaking Free From the World of Autism by Donna Williams *

Ways to Be Me by Libby Scott & Rebecca Westcott* (trilogy)

The Bride Tes t by Helen Hoang *

The Spectrum Girl's Survival Guide: How to Grow Up Awesome and Autistic by Siena Castellon *
On Audible Audible En Español

The Autism-Friendly Guide to Periods by Robyn Steward *

Nerdy, Shy, and Socially Inappropriate by Cynthia Kim *

Camouflage: The Hidden Lives of Autistic Women by Sarah Bargiela*

But You Don't Look Autistic At All by Bianca Toeps*

En Español

La Razan por la Que Salto by Naoki Higashida and Jorge Rizzo (translator) *

Seres humanos Ãnicos: Una manera diferente de ver el autismo - Barry Prizant

Anatomia del Autismo: GuÃa de Bolsillo para Educadores, Padres y Estudiantes - Diego Peña*

Autista y Maravilloso: Un Diario Desde el Interior by Alfonso Camacho *

Casu un Narval by Jessie Sima (picture book)

Meneos, Pistones, Y Apretones Para Calmar Mi Cosquilleo by Lindsey Parker, illustrated by Rebecca Burgess, translated by Laura Fuentes Lopez *Preorder now! (picture book)

Gender and Sexuality

Gender Identity, Sexuality, and Autism by Eva Mendes and Meredith Maroney *

Spectrums: Autistic Transgender People in their Own Words Edited by Maxfield Sparrow *

Supporting Transgender Autistic Youth and Adults by Finn Gratton

The Autistic Trans Guide to Life by Yenn Purkis and Wenn Lawson *

Trans and Autistic: Stories from Life at the Intersection by Noah Adams and Bridget Liang *

How to Be Ace: A Memoir of Growing Up Asexual by Rebecca Burgess *

The Awesome Autistic Guide to Trans Teens by Yenn Purkis and Sam Rose*

General

Autistic Masking: Understanding Identity Management and the Role of Stigma by Kieran Rose and Amy Pearson PhD* *Available for Preorder*

I Am Autistic: A Workbook: Sensory Tools, Practical Advice, and Interactive Journaling for Understanding Life with Autism by Chanelle Moriah*

Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities by Nick Walker*

Workplace Neurodiversity Rising by Lyric Rivera*

What I Mean When I Say I'm Autistic: Unpuzzling a Life on the Autism Spectrum by Annie Kotowicz*

Uncommon Sense by Adam Mardero*

The Young Autistic Adult's Independence Handbook by Haley Moss *

Autistic World Domination: How to Script Your Life by Jolene Stockman*

And Straight on Till Morning: Essays on Autism Acceptance by ASAN and Julia Bascom *

Autism in Adults by Luke Beardon

Trauma, Stigma, and Autism: Developing Resilience and Loosening the Grip of Shame by Gordon Gates *

Autistic Community and the Neurodiversity Movement: Stories from the Front Line edited by Steven K. Kapp *

Knowing Why: Adult-Diagnosed Autistic People on Life and Autism by Autistic Self Advocacy Network, Elizabeth Bartmess (ed.) *

The Neurodiversity Reader: Exploring Concepts, Lived Experience and Implications for Practice by Damian Milton et al *

War on Autism: On the Cultural Logic of Normative Violence by Anne McGuire

A Mismatch of Salience: Explorations of the Nature of Autism From Theory to Practice by Damian Milton *

The Power of Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia, and Other Brain Differences by Thomas Armstrong PhD

Exposure Anxiety - The Invisible Cage: An Exploration of Self-Protection Responses in the Autism Spectrum and Beyond by Donna Williams *

PDA by PDA-ers compiled by Sally Cat *

Look me in the Eye: My Life with Asperger's by John Elder Robison *

On the Outside Looking In: My Life on the Autism Spectrum by Russell Lehmann *

The Creation of Dr. B: A Biography of Bruno Bettelheim by Richard Pollak (biography of Bruno Bettelheim)

For Professionals

The Adult Autism Assessment Handbook: A Neurodiversity Affirming Approach by Davida Hartman et. al.

Autism and the Predictive Brain: Absolute Thinking in a Relative World by Peter Vermeulen

Picture Books

The Autistic Boy in the Unruly Body by Gregory Tino, Illustrated by Patittoo*
(apraxia, autistic pride, self acceptance)

A Day with No Words by Tiffany Hammond, Illustrated by Kate Cosgrove*

Bitsy Bat School Star by Kat Windness*

Some Brains by Nelly Thomas, Illustrated by Cat MacInnes

Remarkable Remy by Melanie Heyworth, illustrated by Nathanial Eckstrom*

Just Right for You by Melanie Heyworth, Illustrated by Celeste Josephine*

Sensory Seeking Sebastian by Christia DeShields, Illustrated by Marissa Nelson

We Move Together by Kelly Fritsch Anne McGuire and Eduardo Trejos

Suzi Spins by Emma Dalmayne and Illustrated by her son Raphelle *

My Autistic Mama by Kati Hirschy, illustrated by Chloe Greenberg*

Do You Want to Play? Making Friends with an Autistic Kid by Daniel Share-Strom, Maxine Share, Illustrated by Naghmeh Afshinjah *

Come On, Calm! by Kelsey Brown illustrated by Joseph Wrightson

Benji, the Bad Day, and Me by Sally J Pla et al. Illustrated by Ken Min *

Too Sticky! :Sensory Issues with Autism by Jen Malia et al. Illustrated by Joanne Lew-Vriethoff *

Come Meet Drayden by Dana Young-Askew, illustrated by Cameron Wilson

Why Johnny Doesn't Flap: NT is Ok by Clay Morton, illustrated by Alex Merry

Juan Has the Jitters by Aneta Crus, Illustrated by Miki Yamamoto

The Brain Forest by Onwards and Upwards Psychology*

When Things Get Too Loud by Anne Alcott

A Friend for Henry by Jenn Bailey, Illustrated by Mika Song *

Benny Doesn't Like to Be Hugged by Zetta Elliott, Illustrated by Purple Wong

The Little Senses Series by Samantha Cotterill, Illustrated by Samantha Cotterill*

A Tiger Called Thomas by Charlotte Zolotow and Diana Cain Bluthenthal

Ada Twist, Scientist by Andrea Beaty, Illustrated by David Roberts

Not Your Typical Dragon by Dan Bar-el, Illustrated by Tim Bowers

I Like Myself by Karen Beaumont, Illustrated by David Catrow

The Day You Begin by Jacqueline Woodson, Illustrated by Rafael Lopez

The Masterpiece: One Big Canvas by Jay Miletsky, Illustrated by Luis Peres

The Molding of Clay by Jay Miletsky, Illustrated by Luis Peres

The Perfect Fit by Naomi Jones, Illustrated by James Jones

Red: A Crayon's Story by Michael Hall, Illustrated by Michael Hall

Swing by Michael Hall, Illustrated by Michael Hall

Be Who You Are by Todd Parr, Illustrated by Todd Parr

It's Okay to be Different by Todd Parr, Illustrated by Todd Parr

My Wandering Dreaming Mind by Merriam Saunders, Illustrated by Tammie Lyon (ND Author)

The Big Umbrella by Amy June Bates and Juniper Bates illustrated by Amy June Bates

Not Quite Narwhal by Jessie Sima, Illustrated by Jessie Sima

Rosalee the Seeker by Nicole Filippone *

Alexander the Avoider by Nicole Filippone *

Noah Chases the Wind by Michelle Worthington illustrated by Joseph Cowman

The Boy with Big, Bi g Feelings by Brittney Winn Lee illustrated by Jacob Souva

The Girl with Big, Big Questions by Brittney Winn Lee illustrated by Jacob Souva

Don't Hug Doug: He Doesn't Like It by Carrie Finison illustrated by Daniel Wiseman

Alex and the Drummer: by Laura Hales, illustrated by Myrah Shariff*

Books for Kids and Teens

The Fire, the Water, and Maudi McGinn by Sally J. Pla* *New Release*

The Infinite by Patience Agbabi

The Time-Thief by Patience Agbabi

The Awesome Autistic Go-To Guide: A Practical Handbook for Autistic Teens and Tweens by Yenn Purkis and Tanya Masterman *

Trouble with a Tiny T by Merriam Saunders (novel) (ND Author)

The State of Grace by Rachael Lucas* (novel)

Afrotistic by Kala Allen Omeiza*

Anatomy of Autism: A Pocket Guide for Educators, Parents, and Students by Diego Pena *

The Autism-Friendly Guide to Periods by Robyn Steward *

Queerly Autistic: The Ultimate Guide for Lgbtqia+ Teens on the Spectrum by Erin Ekins*

Stanley Will Probably be Fine by Sally J. Pla *

Diary of a Young Naturalist by Dara McAnulty *

The Secret Life of Rose: Inside an Autistic Head by Rose Smitten*

Trouble at Table Five (a series) by Tom Watson

M in the Middle: Secret Crushes, Mega-Colossal Anxiety and the People's Republic of Autismby the students of Limpsfield Grange*

M is for Autism: The Teenage Girl's Guide to Autism, and Everyone Else's by the students of Limpsfield Grange*

Geek Girl Series by Holly Smale*

The Awesome Autistic Guide for Trans Teens by Yenn Purkis and Glenn Masterman
(releases in June 2022)

Shake It Up: How to be Young Autistic & Make an Impact by Quincy Hansen*
(releases in July 2022)

Other Lists to Explore

A list from Autistic, Typing - to support independent booksellers and promote disability and racial justice on Bookshop.

Multiple Lists at Raising Luminaries (Books for Littles)
About That Au-Some Book Club

I started That Au-Some Book Club in June 2019 because I needed motivation to read NeuroTribes. Since then, it has grown to over 10,000 members from all around the world!

We discuss books on autism and neurodiversity, host book club meetings with authors (and other cool people), and we hold impromptu meetings over Zoom. It really is a magical place to learn!

You can find highlights from our meetings on the Not an Autism Mom Youtube Channel.

If this list of books on autism and neurodiversity has been helpful to you, consider becoming a Patron.

If you'd like to recommend a book for this list of books on autism and neurodiversity, join us in That Au-Some Book Club!

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100-ish Books on Autism and Neurodiversity - Not an Autism Mom

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Helpline: Referrals, Services, and the Latest Information About Autism

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Our 800.4.AUTISM Helpline provides families and professionals with specific and important information about autism treatment and services available in New Jersey. The Helpline is a valuable and reliable resource for up-to-date facts and findings about autism and often acts as the first line of support for parents as well as a starting point for navigating services in the state of New Jersey.

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‎The Loudest Girl in the World on Apple Podcasts

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Autistic Women & Nonbinary Network (AWN)

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It's my favorite time of the year! Halloween is coming up soon, and for many Latine people like myself, it's also close to Day of the Dead (Día de los Muertos). I love this season of spirits, spooks, and sweets.

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Autistic Women & Nonbinary Network (AWN)

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A psychiatrist diagnosed me as autistic with ADHD. Now, finally, I can thrive | Marianne Eloise

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Far from feeling deprived when the world went into lockdown this year, I thrived. After a difficult start to 2020 grappling with health issues, I felt incapable of doing anything I'd planned, no matter how much I wanted to see my friends, work or travel. It ran deeper than exhaustion: during my entire life I had struggled with things that other people seemed to find easy, like socialising, employment, education or feeling comfortable in my own body. I often found myself overwhelmed, struggling to connect with people and suffering with sensory overload when faced with certain lights, smells, sounds or textures. I needed more time alone than other people to recover from being in the world, and selfishly, lockdown felt like a blessing.

I had been made aware of my differences throughout my life, fighting episodes of burnout and self-destruction, chastising myself for my inability to connect with strangers or just feel remotely relaxed. I was always restless, oscillating between distraction and hyper-focus on the wrong things. I found it increasingly difficult to function, but it wasn't until 2015 that I decided to pursue the answer that some teachers, family members and peers had suggested: a joint diagnosis of autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD).

I'd tried to tell friends or colleagues that I suspected I was autistic with ADHD, but without an official diagnosis, I felt unable to advocate for myself. Knowing why you are the way you are gives you more than knowledge: it gives you power. To be seen and known. To be forgiven and understood.

I had spoken to several medical experts who shared my belief, but an official diagnosis is hard to pursue as an adult. While many autistic and neurodivergent (a term that argues neurological differences including dyslexia, ADHD and ASD are normal variations in the brain) peopleare diagnosed in childhood, many aren't, particularly girls: we mask, or hide, our differences, which takes a great psychological toll. In hindsight, I presented pretty typically as a child, but because I didn't have any real developmental difficulties, ASD and ADHD were not considered.

I received a letter in April reminding me that I was still on the long waiting list for an NHS diagnosis. With resources cut, my needs were a low priority, and I understood that. During lockdown I wanted to make the most of this time, prioritising my mental health after a lifetime of just trying to survive. While I loved being at home, I knew that I would find it impossible to come out of the protective cocoon that I had built for myself without the words to explain how I experienced the world.

I saved my money and reached out to a private psychiatrist to be assessed. In late July, I sat for lengthy assessments, filling out what felt like hundreds of forms on every single aspect of my life, development, and identity. They even interviewed my mother about my childhood. The result was conclusive and it all, finally, made sense.

I had pursued a diagnosis so I could help others understand me better, but it turned out I had more to learn about myself. I began to revisit past friendships and relationships that had been full of conflict or had ended suddenly, and with my diagnosis I had the tools to reevaluate them. Like many autistic people, I struggle to "get" unspoken social codes or emotions, and I felt ashamed for not realising where I had made faux pas but vindicated seeing where somebody else should have been more upfront. I had begged people not to communicate through silence and passive aggression, telling them that I did not understand why they were angry. I saw anew, too, where I had been bullied or unfairly treated. Knowing that I did all I could enabled me to treat myself with compassion.

The most surprising and unexpected outcome of my diagnosis hasn't come from within, though - it's come from the outside world. I've met a community of neurodiverse advocates and activists who make me feel hopeful about our future in the face of ableism and bullying. The history of ASD research is incredibly bleak and dehumanising, with a great deal of it focusing on a cure rather than helping us to thrive. The people I've met advocate for ASD to be taken for what it is: a neurotype, not a disease. The world needs us: our difference, our compassion, our focus. We offer so much, and we'd offer more in a world that accepted us for who we are.

Over the years I have felt so much shame for who I am. I think of the times I've been chastised for not having enough fun, for being too fussy, for moving too much, for being too quiet, for being too loud. I know now that these are not always my problems, but those of an inflexible society. I know now that life would be nicer for everyone, not just neurodivergent people, if we dropped our expectations for how people should express themselves or socialise.

This year I finally accepted myself, and next year, as life begins to resume its normal rhythms of work and play, I'm excited that I'll finally be able to live, understanding that the way I do it won't always look exactly the same as everyone else.

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A psychiatrist diagnosed me as autistic with ADHD. Now, finally, I can thrive | Marianne Eloise

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This year I got to know what being female and neurodivergent means, says freelance writer Marianne Eloise

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Fiction and nonfiction books published by actually autistic authors -- not allistic parents, teachers, doctors, caregivers, etc. of autistic people. Books in this list do not have to be about autism, but they MUST be by autistic authors.

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351 books based on 213 votes: The Kiss Quotient by Helen Hoang, On the Edge of Gone by Corinne Duyvis, A Kind of Spark by Elle McNicoll, Queens of Geek b...

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Fast Facts About Autism For Kids (World Autism Awareness Day)

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The RAADS-R is a questionnaire designed to assist clinicians with the diagnosis of autistic adults who often "escape diagnosis" due to a subclinical level presentation.

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Stairway to STEM | Resources for Autistic Students Going to College

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Resources for neurodivergent students starting college 

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Resources for neurodivergent students starting college 

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Resources for autistic students / students on the autism spectrum transitioning from high school to college, particularly in Science, Technology, Engineering, and Math (STEM) fields

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Stairway to STEM | Resources for Autistic Students Going to College

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Stairway to STEM. Resources for autistic students / students on the autism spectrum transitioning from high school to college in STEM.

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The mission of AANE is to help Autistic and similarly Neurodivergent people build meaningful, connected lives. We provide individuals, families, and professionals with education, community and support, in an inclusive atmosphere of validation and respect.

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The mission of AANE is to help Autistic and similarly Neurodivergent people build meaningful, connected lives. We provide individuals, families, and professionals with education, community and support, in an inclusive atmosphere of validation and respect.

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Connect with the Autism Asperger’s Network (AANE) for comprehensive resources, support, and community for individuals, families, and professionals affected by autism spectrum conditions. Learn more about AANE’s mission and services.

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The Dragon’s Nest is an online education platform dedicated to supporting neurodivergent girls, their families, and educators. By offering personalized resources, community support, and advocacy tools, The Dragon’s Nest aims to transform the landscape of neurodiversity support and education.

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Diagnosis: Formal DSM diagnosis vs. self identifying

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Diagnosis: Formal DSM diagnosis vs. self identifying

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You don't need to read a library full of books or have a fancy degree to be able to say you are Autistic. It is not a disorder, it is not a disease, and you don't always need test

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Interesting checklist but not diagnostic

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By Samantha Craft
Females with Autism: An Unofficial List
Section A: Deep Thinkers

1. A deep thinker

2. A prolific writer drawn to poetry

3. *Highly intelligent

4. Sees things at multiple levels, including her own thinking processes

5. Analyzes existence, the meaning of life, and everything, continually

6. Serious and matter-of-fact in nature

7. Doesn't take things for granted

8. Doesn't simplify

9. Everything is complex

10. Often gets lost in own thoughts and "checks out" (blank stare)

Section B: Innocent

1. Naïve

2. Honest

3. Experiences trouble with lying

4. Finds it difficult to understand manipulation and disloyalty

5. Finds it difficult to understand vindictive behavior and retaliation

6. Easily fooled and conned

7. Feelings of confusion and being overwhelmed

8. Feelings of being misplaced and/or from another planet

9. Feelings of isolation

10. Abused or taken advantage of as a child but didn't think to tell anyone

Section C: Escape and Friendship Section D: Comorbid Attributes Section E: Social Interaction Section F: Finds Refuge when Alone Section G: Sensitive Section H: Sense of Self Section I: Confusion Section J: Words, Numbers, and Patterns

1. Likes to know word origins and/or origin of historical facts/root cause and foundation

2. Confused when there is more than one meaning (or spelling) to a word

3. High interest in songs and song lyrics

4. Notices patterns frequently

5. Remembers things in visual pictures

6. Remembers exact details about someone's life

7. Has a remarkable memory for certain details

8. Writes or creates to relieve anxiety

9. Has certain "feelings" or emotions towards words and/or numbers

10. Words and/or numbers bring a sense of comfort and peace, akin to a friendship

(Optional) Executive Functioning & Motor Skills This area isn't always as evident as other areas

1. Simple tasks can cause extreme hardship

2. Learning to drive a car or rounding the corner in a hallway can be troublesome

3. New places offer their own set of challenges

4. Anything that requires a reasonable amount of steps, dexterity, or know-how can rouse a sense of panic

5. The thought of repairing, fixing, or locating something can cause anxiety

6. Mundane tasks are avoided

7. Cleaning self and home may seem insurmountable

8. Many questions come to mind when setting about to do a task

9. Might leave the house with mismatched socks, shirt buttoned incorrectly, and/or have dyslexia and/or dysgraphia

10. A trip to the grocery store can be overwhelming

11. Trouble copying dance steps, aerobic moves, or direction in a sports gym class

12. Has a hard time finding certain objects in the house but remembers with exact clarity where other objects are; not being able to locate something or thinking about locating something can cause feelings of intense anxiety (object permanence challenges), even with something as simple as opening an envelope

This unofficial checklist can be copied for therapists, counselors, psychiatrists, psychologists, professors, teachers, and relatives, if Samantha Craft's name and contact information remain on the print out. This list was created in 2012 and updated in May, 2016.

Disclaimer: This is my opinion and based on my experience after 12 years of researching about autism and being officially diagnosed with Asperger's Syndrome. It is not meant to replace the DSM-V Autism Spectrum Disorder definition nor is this list meant to serve as an official diagnostic tool. Hundreds of women have used this list in conjunction with the DSM-IV or DSM-V and a professional mental health professional's guidance. It is also based on 4.5 years of communicating almost daily with those that are diagnosed with autism and some that believe themselves to be on the spectrum. It is not all inclusive. Some will fit into categories and not be autistic/Asperian. This is meant as a springboard for discussion and more awareness into the female experience with autism.

This is an unofficial checklist created by an adult female with Asperger's Syndrome (AS) who has a son with Asperger's Syndrome. Samantha Craft has a Masters Degree in Education. Samantha Craft does not hold a doctorate in Psychiatry or Psychology. She has a life-credential as a result of being a female with Asperger's Syndrome and being a parent of a child with Asperger's Syndrome. She has created this list in an effort to assist health professionals in recognizing Asperger's Syndrome in females-for in-depth information regarding females with AS refer to Craft's book Everyday Aspergers.

This post is courtesy of Samantha Craft. Her original post can be viewed here. Samantha Craft is author of the book Everyday Aspergers: A Journey on the Autism Spectrum. Take a look inside Everyday Aspergers.

Related Blog: Ten Ways to Help Your Autistic Loved One
Top Ten Signs You Have Aspergers
The Art of Autism realizes many people come to this page with the questions, Do I have Autism? or Do I have Aspergers? We recommend diagnosis by a professional. There are a couple of popular online quizzes which will give you an indication if you are on the spectrum:

Header Art Work: Artist Lynda Lim

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Females and Autism / Aspergers: A checklist

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Samantha Craft has created an unofficial checklist for females on the autism spectrum. Included at the end of this blog post are a couple online quizzes - the Autism Spectrum Quotient and the Aspie Quiz

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This fall, I dropped my oldest child off for his junior year of college. For our family, this is always a time of excitement, but also one of trepidation. The transition from high school to higher education, from childhood to adulthood, is full of new and evolving challenges. Those challenges are different for students with special needs. Proactive planning, collaboration, and communication, especially between parent and student, are the keys to a successful college journey.

Transition Planning

First, college may or may not be in your student's future. Proper transition planning should begin early in high school, if not sooner. Work with your school district to understand the end goal for your student, with their input. Is a college experience realistic? Is it realistic after four years, or might your student benefit from an extra year of high school, a vocational experience, or skill building? What does your district or community offer that may be appropriate? Does your student intend to go into the workforce, or do they need to explore other supportive services after graduation? These are all issues that can and should be discussed during your student's high school annual review meetings. Setting these goals earlier, even before high school, allows for practical planning over time to put all appropriate supports in place.

While every situation is different, all students should request a final evaluation as they enter junior or senior year to assist with some of these decisions. If the student does intend to go to college, that evaluation will be current and may be used to assist in securing reasonable accommodations. As such, the evaluation should include information to assist with the spectrum of potential requests and needs that may not exist in the school setting.

Choosing a College

The process of choosing a college is daunting for all families. For students with special needs, there are even more factors to consider. Will your student board at school or need to commute? Will they live at school? What do the residential facilities look like? Can your student live independently with their peers? What is the overall size of the school, class size, and student to professor ratio? What supports are available for all students (tutoring services, writing centers, mental health services, counseling, and medical services)? What additional supportive programs are available to students with special needs, and at what cost?

The above questions may all be answered relatively easily. But there are other less tangential aspects of college life, particularly for a student with special needs, which may impact a student's success. One important consideration is how easy it is to get answers to your questions. Maybe more specifically, the responsiveness of the disability support office and other faculty will be very telling. If it is difficult to get information when applying, it will continue to be difficult as a student. If the school is not supportive of a student with different needs, there are plenty of schools that will be. The overall culture of an institution is best vetted by speaking with students and other parents, not necessarily admission representatives. This is a big decision, and an expensive one, so the choice should feel right from the beginning.

Getting Ready to Go

When your child turns 18, in the eyes of the law and therefore colleges, they are an adult. It is often difficult for parents to view their children this way, so abruptly. As a parent, you are probably accustomed to communicating with your student's teachers, schools, counselors, and other support personnel regularly. In college, that will no longer be the case. In addition, your student is going to feel a new sense of independence that comes from being a college student. They may be more resistant to your help - or help from anyone. They may not take advantage of available resources, or not know how to do so. They may feel they do not need the same level of support that they had before. In college, there is little structure, a lot of free time, and it is easy for a few bad choices or missteps to affect an entire semester.

As a family, you can prepare for these challenges. First, talk to your student about your expectations, and the expectations of the college. Also speak to them about their expectations. Agree as a family on the expected level of communication, and your access as a parent to your student's information, such as grades and schedules. There are various legal documents that may give a parent access to financial information, medical information, and academic information that the institution otherwise cannot share. However, do not expect that a professor will ever communicate with a parent about your student's daily assignments, work product, or interactions with your student. Some support personnel may be willing to have some collaborative conversations to support the student; but their preference will always be to work with the student directly to foster independence and self-determination.

Second, prepare your student for the challenge ahead, and put support systems in place to help. For example, if your student has executive functioning challenges, there is a wealth of technological resources that can help with reminders, organizing assignments, and being in class on time. Consider structuring the unstructured time by doing such things as blocking out time for meals, doing work, studying, and exercise.

If your student gets off track, they should know how to get immediate assistance and from where. Speaking from experience, it is very difficult for parents to be that voice. You are now far away. If the only interactions you have with your student are to discuss the "to do" list, or to problem solve, it can have a negative impact on your relationship with your student. Support services on campus, or even outside resources like coaches, can make all the difference.

Finally, your student should apply for accommodations if they need them to succeed. Professors need not modify the curriculum, but a student with a disability has a right to reasonable accommodations that allow them to access that curriculum and the educational facilities. Generally, applications must be made through the disability support services office each semester. But every college has its own rules and processes that may apply, so it is important to familiarize yourself with the process.

It is then the student's responsibility to ask for those accommodations. They must be their own advocate, providing copies of the letters to their professors each semester. Unlike high school, the student may affirmatively ask for an accommodation. In the public school setting, services were legally mandated once included in an Individualized Education Program or otherwise. In college, accommodations are more like a safety net - once obtained, they are there if the student asks for them. To encourage self-advocacy, talk to your student about how they feel about the need to take the accommodations, and encourage them to use them if it will help them be more successful.

Some common accommodations include separate testing locations, extended time, and technological supports. Residential accommodations may also be available. Students who take on internships, externships, or attend programs off campus, often hosted by third parties, must separately seek accommodations for those environments. Similarly, outside testing agencies have their own separate applications for a student to secure accommodations.

With preparation and planning, communication and collaboration, love and support, college life can be a wonderful, exciting, and successful experience for your student.
Tara C. Fappiano is a Special Education and Disability Advocate who regularly works with families to prepare their students for success in college and beyond. She also acts as an advocate for her clients when challenges arise in post-secondary educational settings. She may be reached at tcf@tarafappiano.com, and you can learn more about her practice at www.tarafappiano.com.

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Supporting Young Adults: Transitioning to Post-Secondary Educational Opportunities

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Through planning and securing academic supports and accommodations, parents can facilitate a successful college transition for students with special needs.

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Padlets I've created on a variety of topics

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Padlets I've created on a variety of topics

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This free online test gives you an interesting graphic profile, but the questions are questionable! https://www.idrlabs.com/autism-spectrum/test.php 

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This free online test gives you an interesting graphic profile, but the questions are questionable! https://www.idrlabs.com/autism-spectrum/test.php 

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Felicity House provides social opportunities to women with autism (in NYC)

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Felicity House provides social opportunities to women with autism (in NYC)

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Felicity House provides social opportunities to women with autism

Felicity House is moving to a new location. Click here for more information.

What Community Members are Doing

What Community Members are Talking About

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Felicity House provides social opportunities to women with autism Felicity House is moving to a new location. Click here for more information. What Community Members are Doing What Community Members are Talking About

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The New Jersey Autism Center of Excellence, NJACE

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The New Jersey Autism Center of Excellence, NJACE

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The New Jersey Autism Center of Excellence, NJACE

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The New Jersey Autism Center of Excellence, NJACE

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Innovations of the ICD-11 in the Field of Autism Spectrum Disorder: A Psychological Approach. Includes ND perspective. 

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This article is part of the CPE Special Issue "Innovations in ICD-11", Guest Editor: Andreas Maercker, Clinical Psychology in Europe, 4(Special Issue), https://doi.org/10.32872/10.32872/cpe.v4.si

Monitoring Editor: Andreas Maercker

Abstract

Background

This article aims to explain and elaborate upon the recently released ICD-11 criteria for Autism Spectrum Disorder (ASD, World Health Organization), which endorse a medical model.

Method

We integrate insights from several disciplines (e.g., psychology, linguistics, sociology and lived experiences) to reflect the scientific and ethical insights derived from the biopsychosocial, neurodiversity perspective on autism.

Results

First, we describe the core domains of ASD's behavioural characteristics and then the lifetime, developmental perspective on the manifestations of these behaviours. Subsequently, we discuss potential underlying neuropsychology, related behaviours (i.e. associated features/conditions) and we consider some similarities and differences with the Diagnostic and Statistical Manual of Mental Disorders Fifth Edition (DSM 5, American Psychological Association).

Conclusions

Recommendations for clinical application are provided. For instance, diagnostic classification in clinical practise should be a means to provide proper, suitable care, and therefore all diagnostic assessments should be used to tailor interventions and/or care to the capacities and genuine needs of the people that ask for professional help.

Keywords: Autism Spectrum Disorder, ICD-11, diagnostic process policies

Highlights

Atypical responses to sensory stimuli are included as part of the diagnostic requirements in ICD-11, in contrast to ICD-10, where unusual sensory processing was not yet considered a core (diagnostic) feature.

In ICD-11 it is recognized that some individuals with Autism Spectrum Disorder start to experience distress, impairment and overt social challenges once societal demands increase (e.g., during adolescence or adulthood).

Unlike DSM-5, ICD-11 does not emphasize the criteria related to Disorders of Intellectual Development (ID; such as flipping objects, strong attachment or preoccupation with unusual objects, excessive smelling or touching of objects, echolalia, stimming).

Current ICD-11 Definition, Criteria and Conceptualisations of Autism Spectrum Disorder

According to the current International system for the Classification of Diseases 11 th Revision (ICD-11) diagnostic requirements, in order to receive a classification of Autism Spectrum Disorder (ASD), a person's behaviour should be characterised by three essential features. First, "persistent deficits in the ability to initiate and sustain reciprocal social interaction and social communication" ( World Health Organization, 2019a). Second, by "a range of restricted, repetitive, and inflexible patterns of behaviour, interests or activities that are clearly atypical or excessive for the individual's age and sociocultural context". Atypical responses to sensory stimuli are now included in this domain, unlike ICD-10, where unusual sensory processing was not considered a core (diagnostic) feature. Third, "symptoms should result in significant impairment in personal, family, social, educational, occupational or other important areas of functioning" and, as in previous definitions, the onset should have been during early development. Yet, some individuals with ASD can function in many contexts through exceptional effort, such that their autistic characteristics are not apparent to others during childhood. ICD-11 recognises that overt symptoms are sometimes only fully manifest later, in adolescence or even adulthood, when social demands exceed capacities. Consequently, the condition can present clinically at all ages. ASD is a "lifelong condition, of which the manifestations and impact are likely to vary according to age [developmental stage], intellectual and language abilities, co-occurring conditions and environmental context".

The ICD-11 is an international system for the Classification of Diseases. As such, it endorses a medical model, conceptualising Autism Spectrum Disorder as a medical condition with an inborn, for a substantial part, genetically inherited nature, while acknowledging that gene-environment interactions also play a pivotal role in neurodevelopment (classifying this category in the over-arching category of Neurodevelopmental Disorders). Although most people agree with this conceptualisation of neuro-biological aetiology, amongst a variety of stakeholders, the preference for a biopsychosocial model with more emphasis on how social factors affect functioning and wellbeing, is increasing ( Bolis et al., 2017; Greaves-Lord et al., 2022). In such integrative accounts of ASD, an autistic person's difficulties are not seen as simply caused by individual deficits; but rather are understood as arising from a poor fit between, on the one hand, the individual's characteristics and, on the other hand, the demands placed on them by their environment ( Mandy, 2022). According to this perspective, autistic symptoms are seen as a form of neurodiversity, and emphasis is placed on promoting functioning and wellbeing via environmental modifications that can improve person-environment fit.

In this article, we were invited to describe and reflect upon the recently released ICD-11 criteria, therefore, this will be the focus of the paper. Yet, in doing so, we will try to integrate insights from several disciplines (e.g., medical, psychological, linguistic, sociological and lived experiences), to reflect the scientific and ethical insights derived from the biopsychosocial, neurodiversity perspective on autism. We will first go into the core domains of ASD's behavioural characteristics. Then we will emphasize the lifetime, developmental perspective on the manifestations of these core behaviours. Subsequently, we briefly discuss theories on the underlying neuropsychological mechanisms driving the core behaviours. Finally, we discuss related behaviours (i.e. associated features/conditions), consider similarities and differences with the Diagnostic and Statistical Manual of Mental Disorders Fifth Edition (DSM 5, American Psychiatric Association, 2013) and make some final remarks for clinical application.

Social Communication

Individuals on the autism spectrum display the full range of intellectual functioning and language abilities; nowadays, especially in high-income countries, an ASD diagnostic classification is increasingly made in individuals who have normal-range verbal and non-verbal intellectual abilities (e.g., Lord et al., 2022; Zeidan et al., 2022).

The key features of an ASD comprise persistent deviations from the norms of social behaviour shown by most non-autistic people, including difficulties with initiating and sustaining social communication and reciprocal social interactions, and responding in a manner considered typical (conventional). Whilst there is a normal distribution of such abilities in the general population, people with an ASD are "outside the expected range of typical functioning", when an individual's age and level of intellectual development are considered ( World Health Organization, 2019a). "Specific manifestations will vary according to the individual's chronological age, verbal and intellectual ability", and the overall profile of their autistic characteristics ( World Health Organization, 2019a). There are, however, a number of key characteristics of interpersonal behaviour that are the essence of the condition. First and foremost, is the difficulty of spontaneously understanding the verbal or non-verbal social communications of other people, together with the tendency not to respond typically (conventionally) to those communications. It should be noted that autistic people and professionals are increasingly aware that many of the social difficulties ascribed to autistic people as simply reflecting their impairments, are better understood as reflecting the challenges of 'cross-neurotype' interactions ( Chen et al., 2021). Autistic people may struggle to understand non-autistic people, but also, non-autistic people frequently struggle to empathise with autistic people. People with an ASD diagnosis vary in terms of their social motivation, although ICD-11 states that there is a tendency for them, compared to non-autistic people, to show less interest in social interactions, and be less likely to pay attention to other people's verbal and non-verbal social cues. An important nuance to make here, is that although some autistic people show less involvement in social interaction, this might not necessarily be the result of lower social motivation, but rather it may be a consequence of exhaustion from trying to emulate a typical non-autistic style of interaction, known sometimes as camouflaging (e.g., Cook et al., 2021; Livingston et al., 2019). Moreover, there is a critical role of early communicative experiences in the development of individuals' attention towards other people's verbal and non-verbal social communication cues ( Vernetti et al., 2018).

"Children vary widely in the age at which they first acquire spoken language and the pace at which their speech and language become firmly established" ( World Health Organization, 2019a). Most children with early language delay eventually acquire similar language skills to their same-aged peers. Early language delay alone is not strongly indicative of ASD, unless there is also evidence of limited motivation to engage in social communication and of atypical social interaction skills ( World Health Organization, 2019a).

An essential feature of ASD is persistent atypicality in how language is used and understood for social communication. People with an ASD typically do not follow non-autistic norms (conventions) in how they integrate their spoken language with complementary non-verbal cues, such as (considered) appropriate eye-contact, gestures, facial expressions, nodding in agreement, or other demonstrations of acknowledgement. Compared to non-autistic people, they are less likely to use body language to share a perspective, such as pointing to express interest in a distant object, or sharing attention in some external event or object. There is usually reduced tendency to initiate, join, or to sustain a conventional back-and-forth social conversation, which has its origins in early childhood. In general, people with an ASD have difficulty understanding and using language in social contexts that are dominated by non-autistic people, and are less likely to initiate and sustain reciprocal, purely social conversations (especially 'chat'). The pragmatic language difficulties that are typical of ASD can manifest as misunderstandings of others' language due to literal interpretations, together with speech that lacks 'normal' (i.e., non-autistic) prosody and emotional expressiveness, sometimes with a distinctly monotonous tone of voice, or contrastingly, with exaggerative expressiveness. Some autistic people are unaware that, to non-autistic people, their use of language sounds atypical, and may talk with such precision that it is considered pedantic, together with the use of an arcane vocabulary. In isolation, atypical language of this nature is only indicative; the diagnostic classification of an ASD requires there to be broad range of additional social reciprocity difficulties, as well as tendency towards inflexible behaviour and sensory sensitivities (see below).

In the context of social relationships with non-autistic people, especially with unfamiliar individuals, there can be limited social awareness, which can lead to behaviour that is not appropriately modulated according to the social context. Although people with ASD are often characterised as 'lacking empathy', the evidence for diminished empathic capacity in typical ASD is not strong. Some research shows altered affective empathy (e.g., Mazza et al., 2014), but, especially in cognitively able individuals, cognitive empathy can usually be present, although there may be an altered processing speed (i.e. due to a local rather than a global processing style, information is processed somewhat slower, but in more detail; Bölte et al., 2007). According to clinical observations of autistic adults, the empathic response may be over-developed (i.e., the tendency to experience high levels of emotional contagion). Moreover, whilst someone with ASD may not obviously be conventionally responsive to a non-autistic person's feelings, autistic adults often explain their atypical reaction reflects a state of anxious confusion and/or indecision, rather than unawareness or disinterest.

Compared to non-autistic people, those with ASD are less likely to spontaneously share their interests with others, and may assume that others do spontaneously share their own interests and point of view (without the need to explicitly ask them). Given that in social life, non-autistic people are often highly intolerant of even small deviations from social norms, this can lead to challenges making and sustaining typical peer relationships. The impact of such peer problems changes from early childhood to adolescence. Intimate friendships with peers become more significant during adolescence, and difficulties building such relationships often become more overt at that time (e.g., Mandy, 2022). Isolation from or rejection by peers will usually have secondary consequences in terms of impaired mental health (e.g. social anxiety, depression or even trauma). Genuine pervasive lack of interest in making peer relationships is rare. Clinically, it is important to be aware that a young person's withdrawal from social interactions may reflect social anxiety, and could be the result of persistent lack of acceptance by a peer majority non-autistic group. Furthermore, peer victimisation is a common experience for autistic people, and clinical assessment should always explore whether bullying is occurring, how it can be stopped, and its impact on the individual.

Also, non-autistic individuals "vary in the pace and extent to which they acquire and master skills of reciprocal social interaction and social communication" ( World Health Organization, 2019a). A diagnosis of ASD should only be considered if there is marked and persistent difference from the expected range of abilities and behaviours in these domains given the individual's age, level of intellectual functioning, and sociocultural context. Some individuals may exhibit limited/altered social interaction due to shyness (i.e., feelings of awkwardness or fear in new situations or with unfamiliar people, due to anxiety about negative social judgement), behavioural inhibition (i.e., being slow to approach or to 'warm up' to new people and situations) or behavioural disinhibition (i.e. impulsiveness). Limited social interactions in shy or behaviourally (dis)inhibited children, adolescents, or adults are not indicative of ASD. Shyness is differentiated from ASD by evidence of typical, non-autistic social communication behaviours in familiar situations ( World Health Organization, 2019a).

Repetitive, Stereotyped Behaviours and Sensory Interests

"Many children go through phases of repetitive play and highly focused interests as a part of typical development. Unless there is also evidence of impaired reciprocal social interaction and social communication, patterns of behaviour characterized by repetition, routine, or restricted interests are not by themselves indicative of Autism Spectrum Disorder" ( World Health Organization, 2019a). Clinically significant evidence requires persistent "restricted, repetitive, and inflexible patterns of behaviour, interests, or activities that are clearly atypical and excessive for the individual's age and sociocultural context" ( World Health Organization, 2019a).

Typically, children with ASD are slower and/or less able to adapt to new experiences and circumstances. Strong reactions (often one of acute anxiety, distress and/or anger) can be evoked by changes to a familiar environment that, to non-autistic people, seem trivial, or in response to unanticipated events. Characteristic of the response to such unwelcome change and uncertainty is extreme discomfort which manifests in childhood as acute distress. This resistance to change also commonly manifests as the tendency to strongly adhere to particular routines. These may be geographic, such as the need to follow familiar routes, or may require precise timing, such as during mealtimes or when travelling. The tendency to engage in restricted and repetitive behaviours persists over time, although its frequency and overtness may diminish during adolescence. In contrast, insistence on 'sameness', can become more prominent in later life. Other aspects of this underlying need for consistency and predictability can be observed in terms of unusually strong adherence to rules (e.g., when playing games), as well as marked "and persistent ritualized patterns of behaviour (e.g., a preoccupation with lining up or sorting objects in a particular way" ( World Health Organization, 2019a) or analysing/systemizing all sorts of information). Historically, such behaviours have been dismissed by non-autistic people as serving no apparent external purpose, but recent qualitative research with verbally fluent autistic individuals has revealed that the actions of organizing and systemizing can serve to regulate arousal. Thus, as their internal tension builds up, (e.g., in response to increasing social demands) an autistic person might start organizing or performing some systemic routine, in order to calm down ( Greaves-Lord et al., 2022).

Specific repetitive or stereotyped behaviours will differ according to the developmental stage of the individual, but the tendency is usually life-long. In contrast, "repetitive and stereotyped motor movements, such as whole-body movements (e.g., rocking), atypical gait (e.g., walking on tiptoes), unusual hand or finger movements and posturing" ( World Health Organization, 2019a), are more likely to be observed during childhood and are seen in situations of distress and excitement (i.e. hyperaoursal, see below). Such behaviours can also persist into adulthood, especially in autistic people with a co-occurring Intellectual Disability (abbreviated: ID).

Many individuals with an ASD develop fascinations with specific topics, objects or activities. In ICD-11, these are characterised as persistent preoccupations "with one or more special interests, parts of objects, or specific types of stimuli (including media), or an unusually strong attachment to particular objects (excluding typical comforters)" ( World Health Organization, 2019a). The range of special interests is wide, and they may change from time to time during development. A key feature of the intensity of the special interests that are typical of ASD, is their pervasiveness and the fact that they disrupt an individual's ability to conform to conventional norms within a social setting, to some extent. For example, everyday life may be adversely influenced by the need to pursue those interests. In childhood, this could have a negative impact on the family, as could the intense attachment to favoured objects (e.g., because of the distress engendered by their being left behind or lost). Nevertheless, it is important to recognise that these fascinations often enrich autistic peoples' lives, with positive effects on identity and mood. Furthermore, such fascinations can engender skill and expertise that is valued in wider society.

The most recent addition to the diagnostic rubric of ASD symptoms (i.e., a change from ICD 10 to ICD 11) is the presence of lifelong strong and persistent hypersensitivity and/or hyposensitivity to sensory stimuli. Sensory sensitivities can include unusual interests in certain sensory stimuli, which may include sounds, light, textures (especially clothing and food), odours and tastes. Although a strong interest in spinning objects is often illustrated in assessment tool as characteristic of ASD, this clear exemplar of autistic behaviour is mainly observed in individuals with ID and delayed social-emotional development. A positive interest in sensory stimuli is less common than negative reactions to such stimuli, but a strong negative reaction to everyday sensory stimuli can be upsetting for the autistic person and also disruptive of family life. These typically include sensitivities to sounds, especially white noise such as hand dryers or vacuum cleaners. The sounds may not be especially loud; these reactions are most frequently observed in childhood. Other negative reactions can be observed to bright lights, certain clothing textures including labels, and especially food textures. Negative reactions to textures in food typically include the avoidance of mixed textures, requiring strict food separation. Although such behaviours are not exclusively observed in ASD, their severity and persistence, together with the consequent impact on everyday life, are more typical of ASD.

Life-Course Perspective and Advice on Assessment

When individuals with suspected ASD present in adolescence or in adulthood, it is essential to perform an interview on developmental history, and not to rely exclusively on self-report or observations of current behaviour, however well-structured the observation. This is because one prerequisite for the diagnostic classification (although deliberately formulated in a nuanced way) is evidence that the onset of the atypical behaviours occurred during the early developmental period, typically toddlerhood/childhood (i.e., pre-school/primary school).

In contrast to ICD-10, in ICD-11 there is no longer the requirement of history of delayed onset of language, or clear evidence of autistic symptoms before/around the age of four to five years. This change reflects in part the fact that Asperger syndrome has been discontinued as a valid diagnosis; typically, individuals with normal-range verbal intelligence do not have delayed onset of language and they have been subsumed into the ASD diagnostic rubric. Also, it is now recognized that some individuals with ASD start to experience distress, impairment and overt social challenges once societal demands increase (during adolescence or adulthood).

Late onset symptoms of ASD and their differential diagnosis from personality disorders in adulthood are still a complex and controversial issue. Difficulties in inter-personal functioning (i.e., with understanding others' perspectives, intimacy and self-regulation) are also characteristic of personality disorders. As we do not conventionally diagnose personality disorder in childhood, clear history of early (preschool) social communication difficulties, could be a differentiating feature. Enquiries should attempt to define exactly when the atypical social behaviours started to occur, but more importantly, under what circumstances. Early signs and predictors of later manifest ASD, such as a lack of/altered attention to eyes ( Jones & Klin, 2013) and limited facial recognition ( Eussen et al., 2015)/limited use of facial expressions, should be investigated.

At the time our conventional diagnostic instruments were developed, most clinically recognised children with autism were also experiencing generalized developmental delay (i.e., ID). Plateauing of social communication and language skills and lack of progress in their development characterises many such children. Yet the minority had a period of normal development (sometimes including age-typical language skills), but then lost their previously acquired skills, often in the second year of life. Such regression can be rapid, over a period of days or weeks, and usually leads to impaired language and social responsiveness. "Loss of previously acquired skills is rarely (spontaneously) observed after 3 years of age" ( World Health Organization, 2019a), but can occur in acquired conditions such as encephalitis. If it occurs after age 3, it is more likely to involve a more generalized loss of cognitive and adaptive skills (including the loss of bowel and bladder control, and impaired sleep), as well as regression of language and social abilities ( World Health Organization, 2019a). In rare cases of spontaneous regression, recovery takes place. This is usually slow (over months or years), and usually requires intensive interdisciplinary care that focusses on restoring the lost skills, including support for the development of speech/conversational, adaptive and regulatory skills. Asking and clarifying concrete examples of atypical development is therefore key when performing an interview on developmental history, and especially challenging when done only once the individual and caregivers involved are already older. Therefore, training such interviewing skills is essential when educating mental health professionals.

In preschool children, indicators of an ASD "often include avoidance of mutual eye contact, resistance to (conventional expressions of) physical affection, lack of social imaginary play, language that is delayed in onset, or is precocious" ( World Health Organization, 2019a), but not used for conventional back-and-forth social conversation; social withdrawal, marked fascinations with topics that are sometimes notably unusual, and lack of age-typical social interaction with non-autistic peers, characterized by parallel play or apparent disinterest. "Sensory sensitivities to everyday sounds, or to foods, may overshadow the underlying social communication deficits" ( World Health Organization, 2019a). These social characteristics are often first reported by a nursery or other preschool placement where the child's behaviour is observed to differ significantly from the majority. Therefore, obtaining information from such sources (e.g., reports from infant care agencies/pre-school) can be of important additional value when charting the developmental history, especially in older cases.

In children with ASD without a Disorder of Intellectual Development (or general developmental delay), "social adjustment difficulties outside the home may not be detected until school entry or adolescence", when atypical social communication all-too-commonly leads to peer rejection, bullying and social isolation ( World Health Organization, 2019a). "Resistance to engage in unfamiliar experiences and marked reactions to even minor change in routines is typical" ( World Health Organization, 2019a). Furthermore, a strikingly strong "focus on detail as well as rigidity of behaviour and thinking" may be present. Secondary mental health problems are common, and symptoms of anxiety (i.e. social/specific phobia; e.g. Verheij et al., 2015) may become evident at this stage of development ( World Health Organization, 2019a).

By adolescence, the capacity to cope with increasing social complexity in peer relationships at a period of ever-more demanding academic expectations is often overwhelmed. In some autistic individuals, their underlying social communication difficulties may be overshadowed by the symptoms of co-occurring mental and behavioural disorders. Depressive or anxiety symptoms are often a presenting feature ( World Health Organization, 2019a), and restrictive eating disorders (including anorexia nervosa) become increasingly common in autistic girls at this age. Thus, clinicians should be aware of potential underlying ASD when performing diagnostic assessment in mental health settings.

In adulthood, the capacity for those with ASD to cope with complex and fluid cross-neurotype "social relationships can become increasingly challenged, and clinical presentation may occur when social demands overwhelm the capacity to compensate. Presenting problems in adulthood may represent reactions to (victimisation and) social isolation" ( World Health Organization, 2019a). Also, they may reflect the challenges of planning and organising one's professional and personal life, and regulating emotions, with less support than was received in childhood and adolescence. Compensation strategies may be sufficient to sustain dyadic relationships, but usually come under excessive strain in more complex group situations. "Special interests, and focused attention, may benefit some individuals in education and employment. Work environments may have to be tailored to the capacities (and sensitivities) of the individual. A first diagnosis in adulthood may be precipitated by a breakdown in domestic or work relationships" ( World Health Organization, 2019a). As mentioned, if the individual is autistic, there is always history of at least some atypical signs in early childhood social communication and relationships, although this may only become apparent, or interpreted as such, in retrospect.

Because it is now recognised that ASD represents a more intense manifestation of the wide range of behaviours that are observed in the general population, it is critical to consider the impact of those symptoms on everyday life, before making a diagnosis. Diagnostic criteria, as outlined above, stipulate that autistic characteristics should "result in significant impairment in personal, family, social, educational, occupational or other important areas of functioning" ( World Health Organization, 2019a; e.g., emotional/physical wellbeing). Some individuals with ASD can function well in many contexts, often through exceptional effort on their part, such that their autistic characteristics are 'camouflaged' and are not apparent to others. A diagnosis of ASD is still appropriate in such cases, especially when such exceptional effort is no longer achievable due to aging or changing social circumstances, during which the autistic characteristics might become more apparent to others over time. Camouflaging is commonly described by autistic people as exhausting and is associated with elevated risk for anxiety, depression and suicidality ( Cook et al., 2021).

Hypothesised Neuropsychological Mechanisms Driving the Core Behaviours Defining ASD

Although ASD is defined based on behavioural features, several theories exist on the neuropsychological mechanisms hypothetically underlying these behaviours. Classically, three main theoretical frameworks explaining underlying neuropsychological functioning were presented; Theory of Mind (ToM; e.g., Andreou & Skrimpa, 2020), Executive Functioning (EF; e.g., Demetriou et al., 2019) and Central Coherence (CC; e.g., López et al., 2008). Over time, nuances were made on how these theories each explain particular behavioural aspects of autism (e.g., Happé et al., 2006). More recently, theories have been proposed that combine, integrate and extend these theories, e.g. the Predictive Coding account (PC; e.g., Van de Cruys et al., 2014) and the Polyvagal Theory (PT; e.g., Brown, 2020). Given the scope of this article, we cannot go into detail on all these accounts, nor can we mention the abundant literature. However, we will briefly explain these theories and illustrate them with examples of behaviours seen in autistic people, so that clinical psychologists can a) better understand what mechanisms might be driving certain behaviours, and b) use this to increase the understanding of autistic people they support.

Firstly, ToM refers to the ability to formulate hypotheses on how other people feel, think and thus behave; i.e. mentalizing. Autistic people might sometimes respond differently than conventionally would be expected. Such responses can however be better understood, when being aware that - depending on the circumstances - the response might be either mostly to the verbal information that was primarily processed, or to the visual information that was mainly processed (e.g., Chung et al., 2014).

Secondly, EF refers to a set of capacities used to consciously plan ahead, meet goals, display self-control, etc. Speculatively, more unconscious, automatically driven cognitive distortions might appear in case of cognitive overload in autistic people (e.g., Autistica, 2021). Sometimes, autistic people show the tendency to categorize things or people as all good or all bad, all right or all wrong (sometimes referred to as 'dichotomous thinking'), rather than - at that instance - being able to consciously notice the possibilities in between, sometimes referred to dichotomous thinking.

Weak CC refers to difficulties in 'seeing the bigger picture', but rather an associative, non-linear thinking style in autistic people (e.g., Grandin, 2009). Simply put, some people might mainly have a global (bigger picture) processing style, while other (autistic) people might mainly have a local (detail-focussed) processing style ( Bölte et al., 2007).

The idea of CC was taken further in PC theory. This theory of brain function stipulates that the brain is constantly generating and updating a mental model of the environment (e.g., Pellicano & Burr, 2012). This model is used to generate predictions of sensory input that are compared to actual sensory input. This comparison results in prediction errors that are then used to update and revise the mental model. An autistic person might be focussed more on the actual sensory input and their brain might be constantly working to minimize the gap between the prediction and actual sensory input. As such, this theory might explain why some autistic people have more intolerance of uncertainty, given the larger prediction errors and the cognitive resources it takes to try and solve these. Finally, although the PT ( Porges, 1995) is not yet well substantiated empirically, it's popularity is growing amongst some clinical practitioners and autistic people, as it is relatable. Therefore, we discuss it briefly. Polyvagal theory takes its name from the vagus, a cranial nerve that is the primary component of the parasympathetic nervous system. The autonomic nervous system (ANS) has two parts; the sympathetic nervous system, which is mostly activating ("fight or flight"), and the parasympathetic nervous system, which exists of two distinct branches: a "ventral vagal system" which supports social engagement, and a "dorsal vagal system" which supports immobilisation behaviours, both "rest and digest" and defensive immobilisation or "shutdown". Behavioural responses that derive from the hybrid state of activation and calming are key to the ability to adaptively socially engage. It is speculated that in autistic people, the ANS might (at times) be dysregulated, which could explain emotional melt downs or shut downs in autistic people. Again, we emphasize that in this section we did not provide an extensive explanation of all neuropsychological concepts. Rather, we illustrated some behaviours seen in autistic people and tried to stimulate readers to think about their assumed neurobiological origins. In clinical practice, for most autistic people it is key to connect abstract, neuropsychological concepts to very concrete day-to-day personal experiences, to 'digest' these explanations fully (e.g., Gordon et al., 2015). Thus, in psycho-education, it is essential to help autistic people make these translational connections.

Further Features and Disorders

Some individuals with an ASD experience delay in the development of their intellectual abilities, and qualify for a diagnosis of ID. In countries with well-established facilities for the assessment of autistic symptoms, and with experience in the manifestations of the condition among individuals with good verbal skills, individuals with ID are a minority of those diagnosed with ASD. By contrast, in more under-served areas, those with ID constitute the majority people diagnosed with ASD. "If present, a separate diagnosis of Disorder of Intellectual Development should be assigned, using the appropriate category to designate severity (i.e., Mild, Moderate, Severe, Profound, Provisional). Because social difficulties are a core feature of Autism Spectrum Disorder, the assessment of adaptive behaviour as a part of the diagnosis of a co-occurring Disorder of Intellectual Development should place greater emphasis on the intellectual, conceptual, and practical domains of adaptive functioning than on social skills" ( World Health Organization, 2019a). Self-injurious behaviours (e.g., hitting one's face, head banging) occur more often in autistic people with co-occurring Disorder of Intellectual Development, perhaps because they represent attempts to express and communicate painful feelings, in the absence of verbal means.

Even among individuals with normal-range intellectual abilities, profiles of specific cognitive skills in ASD as measured by standardized assessments, may show striking and unusual patterns of strengths and weaknesses that are highly variable from individual to individual. Clinical experience teaches that such a 'spikey profile' of cognitive strengths and difficulties can affect learning and adaptive functioning to greater extent than would be predicted from the overall scores on measures of verbal and non-verbal intelligence, yet more research on this matter is needed to substantiate such clinical claims. Isolated difficulties in intellectual functioning that are associated with ASD include slow/different processing speed/style ( Bölte et al., 2007) and limited verbal or non-verbal working memory, which may occur in the presence of strong verbal and/or visuospatial skills in other domains.

"The degree of impairment in functional language (spoken or signed) should be designated with a second qualifier. Functional language refers to the capacity of the individual to use language for instrumental purposes (e.g., to express personal needs and desires). This qualifier is intended to reflect primarily the verbal and non-verbal expressive language [difficulties] present in some individuals with Autism Spectrum Disorder" ( World Health Organization, 2019a), and not the atypical pragmatic language that is a core feature of the condition. ICD-11 requires the assessment of whether the individual has a degree of functional language impairment (spoken or signed) relative to their age in the following terms: i) with mild or no impairment of functional language; ii) with impaired functional language (i.e., not able to use more than single words or simple phrases); iii) with complete, or almost complete, absence of functional language ( World Health Organization, 2019a).

It is important to note that the observable manifestation of ASD will be different at different developmental stages (as discussed above), as well as in different groups (e.g., males versus females versus gender-diverse individuals, or those with and without ID). For instance, parental or caregiver concerns about intellectual or other developmental delays (e.g., problems in language and motor coordination) often characterise the presentation in young children during the preschool period. When there is no significant impairment of intellectual functioning, the presentation to clinical services is often prompted by staff at nursery school, who have observed unusual social or other behaviour. In middle childhood, there may be prominent symptoms of anxiety, including social anxiety disorder, school refusal, and specific phobia ( Verheij et al., 2015). During adolescence and adulthood, depressive disorders are a common presenting feature. For women, a restrictive eating disorder can drive engagement with mental health services, with their underlying ASD and/or associated social trauma only being identified later ( Bentz et al., 2022). Across all ages, there is strong co-occurrence with attention deficit/hyperactivity disorder, and in males impulsive and disruptive behaviour often prompt referral (especially in middle childhood), although in females the symptoms are more likely to be related to attention difficulties, rather than impulsivity or hyperactivity. Consequently, it is important to be aware that ASD commonly co-occurs with other mental, behavioural or neurodevelopmental disorders across the lifespan. In a substantial proportion of cases, particularly in adolescence and adulthood, it is the co-occurring disorder that first brings the autistic individual to clinical attention. Some people with ASD are capable of functioning even in environments that are poorly adapted to accommodate them, by making an exceptional effort to compensate for their symptoms during childhood, adolescence or adulthood (i.e., 'camouflaging'). Such camouflaging requires sustained effort, is more typical of females (although it is common in all genders), and can have deleterious impact on mental health and well-being ( Cook et al., 2021).

"Some young individuals with Autism Spectrum Disorder, especially those with a co-occurring Disorder of Intellectual Development, develop epilepsy or seizures during early childhood with a second increase in prevalence during adolescence. Catatonic states have also been described. A number of medical disorders such as Tuberous Sclerosis, chromosomal abnormalities including Fragile X Syndrome, Cerebral Palsy, early onset epileptic encephalopathies, and Neurofibromatosis" are associated with an ASD diagnosis ( World Health Organization, 2019a), with or without a co-occurring Disorder of Intellectual Development. Genomic deletions, duplications and other genetic abnormalities are increasingly described in individuals with ASD, some of which may be important for genetic counselling. Prenatal exposure to valproate is also associated with an increased risk of ASD ( World Health Organization, 2019a).

Recently, there is growing recognition of the fact that people with ASD more frequently develop more severe physical illnesses, in the worst case resulting in relatively early death, as compared to other people from the general population. Potentially, this might reflect the fact that autistic people experience high levels of stress, due to having to live in environments that are poorly designed to accommodate them, with consequent elevated levels of mental health, suicidality and substance use problems. Poor physical health outcomes could reflect a combination of two underlying causes. First, autistic people might have a limited capacity to sense and recognize early physical symptoms. This might be due to limited interoception, i.e. hypo-sensitivity or a limited inclination to direct their attention towards internal stimuli of the body (e.g. Garfinkel et al., 2016). Secondly, they might be reluctant to communicate any concerns they have about their physical health to professionals. This might result in their initially not seeking access to medical services, as well as limiting their action in following up any subsequent referral to medical specialists. Research on this topic is still ongoing. Nevertheless, it is important that mental health professionals are aware that there is potentially limited somatic awareness in autistic clients. They should therefore pro-actively bring up the topic of their client's physical health. Psychologists should consider referral to a medical specialist when an autistic client complains about somatic symptoms, and should be aware of their potential professional biases. Faced with an autistic client who has somatic symptoms they should not automatically assume a psychological explanation, but be aware that an alternative physical condition could be present, and that condition should be adequately investigated. The prevalence of premature mortality affecting people on the autism spectrum, which is excessive, could be attributable at least in part from these risk factors.

Comparison Between ICD-11 and DSM-5

Both systems of diagnosis differ substantially from previous versions (ICD-10 and DSM-IV and DSM IV TR). There are differences in their conceptualization of ASD as a broad category comprising many different conditions (not yet identified, the 'autisms'), and in terms of specific phenotype requirements. Hence the agreed term ASD, reflecting the heterogeneity of those conditions. Both systems recognize that ASD is a set of symptoms that exist on a continuum that blends into normal variation, and they also consider the fact that at one extreme end there is a subset of conditions that are associated with identifiable biological substrates (largely genetic, but also some environmentally induced risks). The greatest difference between the ICD-11 and DSM 5 diagnostic systems is not in the social communication aspects of the condition, but in the patterns of restrictive, repetitive, and inflexible patterns of behaviour that are regarded as atypical.

The blurry boundaries between ID and ASD bedevils research. Experts who are looking at genetic risk factors continue to have a heated debate about whether certain genetic anomalies increase risk for ASD or ID or both. ICD-11 criteria are cognizant of the fact that nowadays most diagnoses of ASD are made in individuals who are of normal-range intelligence. Accordingly, B-scale symptoms are defined in a way that reflects behaviours that are seen in those individuals (more broadly ranging than is discussed in DSM-5). Unlike DSM-5, ICD-11 does not emphasize the ID-related criteria (such as flipping objects, strong attachment or preoccupation with unusual objects, excessive smelling or touching of objects, echolalia, stimming; WHO, 2019b). The associated limited enquiry about symptoms of Repetitive, Restricted and Stereotyped behaviour (RRSB) is one of the reasons why there was, under the former DSM-IV TR criteria, such high prevalence of Pervasive Developmental Disorder - Not Otherwise Specified ('PDD-NOS'). By broadening the criteria and introducing concepts such as 'Lack of adaptability to new experiences and circumstances...' ICD-11 has aimed to reduce the perceived lack of sensitivity of the DSM-5 criteria to cognitively able and older individuals.

Intellectual disability is conceptualized as a homogeneous condition in DSM-5. It is said that ASD may be difficult to differentiate from ID in very young children (under the heading Differential Diagnosis), but this statement exemplifies the problem that in the USA the terms are much closer aligned than the developers of ICD-11 considered to be appropriate. DSM-5 does not make distinctions between levels of intellectual impairment. In ICD-11, as discussed, there is the possibility to record an associated Disorder of Intellectual Development, and this should be assigned a degree of severity.

DSM-5 criteria state that, to make an ASD diagnosis, the atypical social communication should be more marked than would be anticipated from the individual's developmental level when any associated ID is considered. In ICD-11 a similar statement is made. Both diagnostic systems acknowledge that it is important to distinguish the lack of adaptive behaviours that are indicative of generalized learning disabilities from the specific difficulties that are experienced by individuals with ASD. The difference in emphasis between the systems reflects the expectation in the US that it is important to identify ASD symptomatology in those with ID, whereas in ICD-11 the emphasis is on the importance of identifying intellectual impairment in those with a primary diagnosis of ASD.

In DSM-5 a differential diagnosis is made between ASD and Social (Pragmatic) Communication Disorder, a condition that does not exist in ICD-11. The developers of ICD-11 criteria were not convinced that a specific disorder of this nature could be differentiated clearly from atypical social communication that is associated with ASD, nor from varieties of Specific Language Impairment ( Mandy et al., 2017). ICD-11 records the degree of impairment of functional language at three levels, but this distinction is not treated as a differential diagnosis. That decision, to record three levels of impairment appears to be similar, but more structured, than the DSM-5 stipulation to use the specifier 'with or without accompanying language impairment' with an injunction to assess the current level of language and describe it. The choice of three levels reflected the need to be more explicit for clinical purposes, and the ICD-11 developer's estimate that this distinction could be made reliably.

Both systems of diagnosis require the recording of loss of skills. In ICD-11 there is a qualifier that records whether there is loss of previously acquired skills, or not. DSM-5 discusses loss of skills in the context of Development and Course and distinguishes social from loss of other skills (such as toileting or motor skills). ICD-11 acknowledges that the pattern of skill loss will be different at different stages of development.

DSM-5 has a section on differential diagnosis which implies that it is possible that ASD could be confused with other diagnoses, such as selective mutism or ADHD. ICD-11 has taken a different approach, recognizing that these conditions can (and frequently do) co-occur. Hence, in ICD-11 they are included in a section that uses the term 'Boundaries with Other Disorders and Conditions'. The guidelines in ICD-11 provide greater detail than DSM-5 about the distinction between conditions that may present with an autism-like phenotype.

Towards Intervention to Improve Quality of Life and Functioning

In our view, the diagnostic classification of ASD should always inform and serve proper, suitable interventions and support aimed at improving the wellbeing and functioning of the autistic person. Thus, clinical psychologists should remain aware that diagnostic classification is not a purpose in itself. Therefore, as part of the diagnostic assessment process, clinicians should perform assessments with a purpose in mind. If the goal is to primarily acquire new insights for scientific/applied research and/or related mental health care innovations, that purpose of potential additional assessments should be transparently communicated to all involved. Diagnostic classification in clinical practise should be a means to provide proper, suitable care, and therefore all diagnostic assessments should be used to tailor the interventions and/or care to the capacities and genuine needs of the people that ask for professional help. Even though ASD is conceptualized as predominantly inborn, so genetically determined condition, the interaction with social factors is more and more recognized both in society as well as in research. As such, interventions to help autistic people should not simply focus on effecting change in the individual, but should also include steps to improve person-environment fit by making adaptations to the environment. Furthermore, intervention targets should be identified collaboratively with the client and their family, and will often concern improving wellbeing, mental health and societal functioning. Whilst practice may need to be adapted to promote access and inclusion for autistic clients, mental health care providers are in a good position to use their clinical skills to offer effective help. There is growing evidence-base for psychological treatment procedures and social support interventions. Recommendations regarding suitable methods for treatment and support with sufficient evidence as well as preference base will be provided in a future follow up article.

Acknowledgements

We want to thank Gillian Baird and Graccielle Rodrigues da Cunha who were involved in writing a related book chapter. Also, gratitude goes out to Annemiek Landlust, Inge van Balkom and Sigrid Piening who at the Autism Team North-Netherlands provide an excellent environment in which much can be learned about ASD, conceptually as well as practically. Finally, a large thank you to all members of the Academic Workplace Autism, the Volante workgroup and Autism Europe who enlarged our perception and conception of what ASD entails when experienced at a daily basis.

Funding Statement

The authors have no funding to report.

Competing Interests

All authors were involved in the development and evaluation of the Developmental, Dimensional and Diagnostic interview (3Di), a semi-structured interview that can be used to clarify the developmental history as part of the diagnostic assessment process concerning Autism Spectrum Disorder.

References

American Psychiatric Association. (2013). [Diagnostic and statistical manual of mental disorders (5th ed.). 10.1176/appi.books.9780890425596 [CrossRef] Google Scholar]

Autistica. (2021). Unhelpful thinking styles.https://www.autistica.org.uk/what-is-autism/anxiety-and-autism-hub/unhelpful-thinking-styles

Brown, D. (2020). Polyvagal theory and regulating our bodily state. Affect Autism.https://affectautism.com/2020/08/24/polyvagal/

Cook, J., Hull, L., Crane, L., & Mandy, W. (2021). Camouflaging in autism: A systematic review. Clinical Psychology Review, 89, 102080. 10.1016/j.cpr.2021.102080 [[PubMed] [CrossRef] Google Scholar]

Garfinkel, S. N., Tiley, C., O'Keeffe, S., Harrison, N. A., Seth, A. K., & Critchley, H. D. (2016). Discrepancies between dimensions of interoception in autism: Implications for emotion and anxiety. Biological Psychology, 114, 117-126. 10.1016/j.biopsycho.2015.12.003 [[PubMed] [CrossRef] Google Scholar]

Greaves-Lord, K., Kruizinga, I., Landsman, J., van Daalen, E., Landlust, A., & van Balkom, I. D. C. (2022). Factors associated with behavioural problems in ASD. Wetenschappelijk Tijdschrift Autisme, 2, 2-25. 10.36254/WTA.2022.201 [[CrossRef] Google Scholar]

Livingston, L. A., Shah, P., & Happé, F. (2019). Compensation in autism is not consistent with social motivation theory. Behavioral and Brain Sciences, 42, E99. 10.1017/S0140525X18002388 [[CrossRef] Google Scholar]

World Health Organization. (2019a). 6A02 Autism spectrum disorder. In International statistical classification of diseases and related health problems (11th ed.). https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/437815624

World Health Organization. (2019b). 6A00 Disorders of intellectual development. In International statistical classification of diseases and related health problems (11th ed.). https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/605267007

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Innovations of the ICD-11 in the Field of Autism Spectrum Disorder: A Psychological Approach

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This article aims to explain and elaborate upon the recently released ICD-11 criteria for Autism Spectrum Disorder (ASD, World Health Organization), which endorse a medical model.We integrate insights from several disciplines (e.g., psychology, linguistics, ...