The picture shows a school classroom as I see it, as an autistic person. A kaleidoscope of shape and blinding lighting, with vague outlines which are probably other students. Deafening noise. The stench of different smells. The confusion of many voices, including some heard through walls from neighbouring halls and classes. School uniform that feels like barbed wire on my skin.
In the chaos, a different voice which I have to try to listen to. It’s so hard. My brain doesn’t want to tune the rest of the noise out. Apparently I’ve been asked something, but I miss it. The voice gets more strident, the class turns to look at me. The intense stares overwhelm me. The person next to me jostles me and it feels like an electric shock on my skin. Only six more hours of hell to go…. only six….
Some of our autistic pupils simply cannot do this alone, without ‘time out’ to recover from the pain and exhaustion during the school day. Not for hour after hour of puzzling painful chaos.
CW: behaviorism, ABA, PB[I]S, ableism, mental health, suicide
Walk into many SpEd classrooms, and you’ll see little awareness of neurodiversity and the social model of disability. Students with conflicting sensory needs and accommodations are squished together with no access to cave, campfire, or watering hole zones. This sensory environment feeds the overwhelm -> meltdown -> burnout cycle. Feedback loops cascade. Mind blind neurotypical adults call across the room, feeding the overwhelm. They ratchet compliance, feeding the overwhelm. They treat meltdowns as attention-seeking “fits”, feeding the overwhelm. They not only fail to presume competence, they speak about kids as if they aren’t even there, feeding the overwhelm. The familiar yet wrong things are done.
Sensory Overwhelm and Meltdowns
We’ve turned classrooms into a hell for autism. Fluorescent lighting. Endless noise. Everywhere, bright patterns and overloading information. Groupwork and social time. Crowded hallways and relentless academic pressure. Autistic children mostly could cope in the quieter schools of decades ago. Not a hope now.
We cannot simply exclude autistic pupils for entering meltdowns. Meltdowns are part of autism for a good number of autistic young people.
Whilst mindful that of course everyone needs to be safe, the way to achieve safety is to stop hurting the autistic children. Punishing them for responding to pain is not something any of us need to do.
What schools need to do is to understand autism. In understanding it, we can help to stop putting the children in pain and exhaustion. It’s actually quite easy. And quite cheap.
One of the more encouraging developments in the autism field over the last decade or so has been a growing awareness of the significance of sensory issues. Sensory sensitivities are included in the DSM-5 as part part of the diagnostic criteria for autism, and in teacher training materials, such as those provided by the AET. They are also highlighted in campaigns by the National Autistic Society (NAS), for example. But despite these signs of increased understanding, I’m not convinced that in our schools there is a sufficiently nuanced appreciation of this multi-faceted phenomenon, which potentially influences a whole range of physical and perceptual processes (Bogdashina 2016). Indeed, the school environment can present autistic children with a multi-sensory onslaught in terms of sounds, smells, textures and visual impacts that constitutes both a distraction and a source of discomfort (Ashburner, Ziviani and Rodger 2008; Caldwell 2008). There was also clear evidence from my own study that sensory issues, and noise in particular, can be highly exclusionary factors for autistic children in schools.
The most important thing to understand about autism in shared space is sensory overwhelm. Education, in my experience as student and parent, doesn’t, not in any practical, first-person way. ABA and behaviorism pointedly don’t understand.
Plenty of policies and programs limit our ability to do right by children. But perhaps the most restrictive virtual straitjacket that educators face is behaviorism – a psychological theory that would have us focus exclusively on what can be seen and measured, that ignores or dismisses inner experience and reduces wholes to parts. It also suggests that everything people do can be explained as a quest for reinforcement – and, by implication, that we can control others by rewarding them selectively.
Allow me, then, to propose this rule of thumb: The value of any book, article, or presentation intended for teachers (or parents) is inversely related to the number of times the word “behavior” appears in it. The more our attention is fixed on the surface, the more we slight students’ underlying motives, values, and needs.
It’s been decades since academic psychology took seriously the orthodox behaviorism of John B. Watson and B.F. Skinner, which by now has shrunk to a cult-like clan of “behavior analysts.” But, alas, its reductionist influence lives on – in classroom (and schoolwide) management programs like PBIS and Class Dojo, in scripted curricula and the reduction of children’s learning to “data,” in grades and rubrics, in “competency”- and “proficiency”-based approaches to instruction, in standardized assessments, in reading incentives and merit pay for teachers.
It’s time we outgrew this limited and limiting psychological theory. That means attending less to students’ behaviors and more to the students themselves.
We navigate systems stacked against us to get access to what amounts to dog training—that dog trainers know better than to use—and a segregated “special” track that pathologically pathologizes difference and fails to connect with the communities it helps marginalize.
The specialists that serve this “special” track aren’t so much specialized in the lives and needs of neurodivergent and disabled people (managing sensory overwhelm, avoiding meltdown and burnout, dealing with ableism, connecting with online communities, developing agency and voice through self-advocacy) as they are specialized in deficit and medical models that pathologize difference and identity. Such framing is too limited to see us.
Autistic Adults and Autistic Community
After autistic students age out of our care, we erase them again as adults. Instead, we should be listening to them.
More children than ever before are being diagnosed with autism. But what about the adults? Some of these individuals have never been diagnosed but have always known they were a bit “different.” Others were diagnosed but did not have the same degree of societal acceptance or the same number of resources available to help them cope with a neurotypical world.
Now this group of adults is the demographic that best understands what people with autism need, whether or not they know how to articulate it in a way the rest of society is able to grasp. But what these men and women have to say about autism is important. These people need to be heard!
The video below encourages adults with autism to get involved in the discussion and asks others to be cognizant of the needs of people with autism and invite them into the conversation. The neurotypical community needs adults with autism to lend their voices and experiences to help make the future brighter for the next generation!
Check out this powerful video!
understanding the perspectives and experiences of autistic children and adults in particular was essential. Time and again I found that issues aired say, by teachers, would be completely reframed when the autistic adults discussed the same points.
Being an autistic parent of an autistic child means navigating a world that doesn’t see us as whole while advocating for two people at the same time. Specialists don’t take autistic parents seriously, don’t trust that we know our own needs, let alone a child’s. How can we when we’re in need of special services and accommodations, too?
After sensory overwhelm, the next most important thing to understand about autism in the classroom is autistic burnout. Autistic burnout is unknown in the deficit and medical models. To hear about it, you have to go to #ActuallyAutistic people. We live this.
If you saw someone going through Autistic Burnout would you be able to recognise it? Would you even know what it means? Would you know what it meant for yourself if you are an Autistic person? The sad truth is that so many Autistic people, children and adults, go through this with zero comprehension of what is happening to them and with zero support from their friends and families.
If you’re a parent reading this, I can confidently say that I bet that no Professional, from diagnosis, through any support services you’re lucky enough to have been given, will have mentioned Autistic Burnout or explained what it is. If you’re an Autistic person, nobody will have told you about it either, unless you’ve engaged with the Autistic community.
Autistic Burnout is an integral part of the life of an Autistic person that affects us pretty much from the moment we’re born to the day we die, yet nobody, apart from Autistic people really seem to know about it…
Do as these researchers are finally doing. They are in the space connecting with autistic people. They are using and spreading our language. They are building, with us, a community of practice around participatory research that reflects our priorities. We see them and welcome others, particularly K-12.
Scientists are increasingly recognizing a moral imperative to collaborate with the communities they study, and the practical benefits that result. Autism researchers are joining this movement, partnering with people on the spectrum and their families to better address their priorities.
The State of Research and The Harm Done
Events like The International Society for Autism Research (INSAR) annual meeting are waking to the harm that has been done. They are finally including autistic people and autistic perspective.
A Better Future, Together
So many of us in this system want to do better. Students and teachers find themselves in spaces guaranteed to result in feedback loops and meltdowns and the eventual burnout of everyone involved. Responding to fires and stresses caused by overloaded sensory spaces and deficit ideology consumes more time, people, and passion than available and starves a better future of oxygen.
A better future requires time and will to get structural, get social, get equity literate, connect with communities, and build classroom user experiences compatible with neurodiversity and disability. SpEd and self-advocates should be working together, designing for real life and fixing injustice, not kids.
A better future requires a justice mindset.
A better future requires an acceptance mindset.
A better future is a future made together. Respecting neurodiversity improves interactions between neurodivergent people and public services. To that end, here are some autistic perspectives on sensory overwhelm, meltdowns, burnout, compliance, behaviorism, and “special needs“.
Sensory overwhelm is a marquee feature of my life. Autistic perception can be a high fidelity flood in an intense world. “Autistic perception is the direct perception of the forming of experience. This has effects: activities which require parsing (crossing the street, finding the path in the forest) can be much more difficult. But there is no question that autistic perception experiences richness in a way the more neurotypically inclined perception rarely does.“
Prolonged sensory overwhelm can lead to meltdown. A meltdown is not a tantrum. It is not attention-seeking. It is a response to overwhelm, anxiety, and stress. If I meltdown, the best thing you can do is be present, patient, calm, quiet, and compassionate. Meltdowns are tidal waves of sensory overwhelm. Try not to add to the overwhelm. “But I’m tortured because whilst I don’t want to make a scene or have strangers adding to the overload and overwhelm, I’m simultaneously desperate for someone to give me a massive, firm, bear-hug. To hide me, cocoon me, and shield me from the shock waves that travel from their universe into mine.“
Overwhelm, meltdowns, and the stress of trying to fit into neurotypical society lead to autistic burnout. “Burnout can happen to anyone at any age, because of the expectation to look neurotypical, to not stim, to be as non-autistic as possible. Being something that neurologically you are not is exhausting.”
“Noncompliance is a social skill“. “Prioritize teaching noncompliance and autonomy to your kids. Prioritize agency.” “Many behavior therapies are compliance-based. Compliance is not a survival skill. It makes us vulnerable.” “It’s of crucial importance that behavior based compliance training not be central to the way we parent, teach, or offer therapy to autistic children. Because of the way it leaves them vulnerable to harm, not only as children, but for the rest of their lives.” Disabled kids “are driven to comply, and comply, and comply. It strips them of agency. It puts them at risk for abuse.” “The most important thing a developmentally disabled child needs to learn is how to say “no.” If they only learn one thing, let it be that.” “Our non-compliance is not intended to be rebellious. We simply do not comply with things that harm us. But since a great number of things that harm us are not harmful to most neurotypicals, we are viewed as untamed and in need of straightening up.” ‘What I am against are therapies to make us stop flapping our hands or spinning in circles. I am against forbidding children to use sign language or AAC devices to communicate when speech is difficult. I am against any therapy designed to make us look “normal” or “indistinguishable from our peers.” My peers are Autistic and I am just fine with looking and sounding like them.‘ “When an autistic teen without a standard means of expressive communication suddenly sits down and refuses to do something he’s done day after day, this is self-advocacy … When an autistic person who has been told both overtly and otherwise that she has no future and no personhood reacts by attempting in any way possible to attack the place in which she’s been imprisoned and the people who keep her there, this is self-advocacy … When people generally said to be incapable of communication find ways of making clear what they do and don’t want through means other than words, this is self-advocacy.” “We don’t believe that conventional communication should be the prerequisite for your loved one having their communication honored.“
The logic of the connection between “special needs” and “special [segregated] places” is very strong – it doesn’t need reinforcement – it needs to be broken.
Further, the “special needs” label sets up the medical “care” model to disability rather than the social inclusion model of disability. It narrows and medicalises society’s response to the person by suggesting that the focus should be on “treating” their “special needs”, rather than on the person’s environment responding to and accommodating the person – including them for the individual that they are.
There is another insidious but serious consequence of being labelled (as having or being) “special needs”. The label carries with it the implication that a person with “special needs” can only have their needs met by “special” help or “specially-trained” people – by “specialists”. That implication is particularly powerful and damaging in our mainstream schooling systems – it is a barrier to mainstream schools, administrators and teachers feeling responsible, empowered or skilled to embrace and practice inclusive education in regular classrooms, and accordingly perpetuates attitudinal resistance to realising the human right to inclusive education under Article 24 of the Convention on the Rights of Persons with Disabilities.
In other words, the language of “special needs” leads to, and serves to excuse, a “can’t do” attitude as the default position of many general educators – it effectively deprives inclusive education of its necessary oxygen – a conducive “can do” classroom culture.
The label of “special needs” is inconsistent with recognition of disability as part of human diversity. In that social framework, none of us are “special” as we are all equal siblings in the diverse family of humanity.
An education that is designed to the edges and takes into account the jagged learning profile of all students can help unlock the potential in every child.
We have autistic children who need us to support them as architects of their own liberation against the schools and clinicians and institutions and police and prosecutors who would crush and destroy them.
- I’m Autistic. Here’s what I’d like you to know.
- Equity Literate Education: Fix Injustice, Not Kids
- Design is Tested at the Edges: Intersectionality, The Social Model of Disability, and Design for Real Life
- Autistic Burnout: The Cost of Coping and Passing
- Good Vibrations, Bad Vibrations, Overwhelm, and Meltdown
- Social Support, Well-being, and Quality of Life Among Autistic People
- Presume Competence: A Hippocratic Oath for Education
- Autistic Empathy
- The Double Empathy Problem: Developing Empathy and Reciprocity in Neurotypical Adults
- Autistic Anxiety and the Ableism of Accommodation
- Neurodiversity and Unilateral Accommodationism
- Eye Contact and Neurodiversity
- Picking Floods, Picking Senses
- Navigating Autism Acceptance Month and Autism Myths
- The Gift: LD/ADHD Reframed
- Identity First
- The Segregation of Special
- Bring the backchannel forward. Written communication is the great social equalizer.
- Inspiration Porn, Growth Mindset, and Deficit Ideology
- Neurodiversity Library
- Interaction Badges
- Hidden Disability
- Ben Foss on Dyslexia and Shame
- Compassion is not coddling
- The Many Forms of Difference
- Neurodiversity and Gender Non-conformity, Dysphoria and Fluidity
- Bathroom Bills, Neurodiversity, and Disability
- Neurodiversity and Cognition Representation
- Harm reduction, addiction, tough love, 12 steps, neurodiversity, and the troubled-teen industry
- Transitioning from invisible to visible disability
- Atypical and Autism Representation
- An Actually Autistic Review of “To Siri with Love”
- Designing for Inclusivity with the Social Model
- We don’t need your mindset marketing.
- Mindset Marketing, Behaviorism, and Deficit Ideology
- Cambridge Analytica, Mindset Marketing, and Behaviorism
- The Pipeline Problem and the Meritocracy Myth
- When Grit Isn’t Enough
- Surveillance, Positive Behavior Support, and Intrinsic Motivation
- The Effects of Authority, Compliance, and Pathologizing Students
- Lower Ed, Paying the Price, and Weapons of Math Destruction
Autistic anxiety is a powerful presence in my life. Its intensity can be unfathomable to a neurotypical mind. I’m 44 years old and have trouble ordering food at a restaurant. I need hours to come down from the adrenaline poisoning of a one-minute phone call. I meltdown in crowds. Adrenal exhaustion is a near-permanent condition. This has been so for my whole life.
This, for me, is a disability. In a context where I’m required to talk and interact at length, I am disabled. If the internet and the web hadn’t come into being as I entered college and the workforce, I would likely have gone unemployed and ended up homeless. I didn’t expect to live to middle age. I expected to eventually defenestrate. “Written communication is the great social equalizer.”
Disability requires context. Change the context, and eliminate the disability. The internet changed the context and made a world where I could survive. Remote work changed the context as I was burning out hard in corporate environments.
Change context with acceptance. Acceptance is practical and effective magic. Ditch the language of accommodations. Accommodation is not acceptance. You can’t have an inclusive-by-default culture when your mindset and framing are accommodation. Accommodation encourages the harmful ableist tropes of people being ”special” and ”getting away with” extra “privileges” and ”advantages”. Accommodation is fertile ground for zero-sum thinking, grievance culture, and the politics of resentment. You can’t build inclusion on accommodation. Inclusion requires acceptance.
I am disabled in certain contexts, but I am able and awesome in others. Like many autistic folks, my strengths are radically genuine passion, focused obsession, burning drive, pattern recognition, and hyper-empathy. In a context that harnesses these strengths instead of remediating my deficits, I can create pretty cool things with the help of a diverse team that compliments my shortcomings.
“Being autistic has always given me a strong sense of justice and fairness, and a burning drive to do the right thing and to fight for it, even when it seems like struggling against the weight of the world. This seems very related to my extreme empathy, which is also tied to my experience of being autistic.
“Knowing that injustice or violence exist anywhere is deeply painful for me, whether it directly targets me or not, and I believe that I must do anything within my capacity to work for a world where none of us have to be afraid anymore. If I were not autistic, I am certain I would not have the same drive as I do now.”
“The best things about being autistic for me are learning deeply about different subjects through hyperfocus, full immersion in sensory experiences like listening to music or watching a film, and noticing things others may not.
“The best thing for me about being autistic is the level of passion I have about my areas of interest. It drives and enables me to learn and memorize large amounts of information about a specific subject, or to become very good at a particular skill …
In autistic circles, we have the saying, “Embrace the obsession.” That’s what I’ve been doing my entire career, embracing my obsessions in cooperation with others. Rather than remediating deficits, we need to embrace the obsession at home, in school, and at work.
Being autistic in a neurotypical company or school steeped in accommodation instead of acceptance is hard, often impossibly so. The culture is aligned against us. The culture fuels internalized ableism, anxiety, depression, and burn out. What if the tables were turned?
What if The Tables were Turned . . .
What would it be like if autistics were the founders, owners, leaders, managers, and supervisors in most businesses in the world.
And we told the non-autistics that we would train them for bottom-level entry jobs but they could work their way up, maybe.
And we told the non-autistics we would provide specialized training just for them, so they might possibly succeed.
And we told them managerial positions were hard to come by because of certain character traits the non-autistics lacked.
And we told them, even after they tried hard, and followed the guidelines and suggestions, and sat in on the seminars, and listened to everything that was different about them, that they still needed to try better and to look at their actions. We didn’t hesitate to highlight what they could improve upon during performance reviews. We needed to treat them like everyone else during evaluations. Equality.
“We needed to treat them like everyone else during evaluations. Equality.”
This insistence on “equality” of treatment is ableist. It is used to drive neurodivergent and disabled people out of work and out of society. This sort of equality is anti-acceptance and thus anti-inclusion. “Fair is not when everyone has the same thing, but when everyone has what they need.”
I recommend NeuroTribes to everyone working with other humans. We tech workers talk about changing the world and democratizing stuff; that book actually did it. It changed the conversation about what it is to be human. It is a history of the 20th Century through the lens of the dispossessed and misunderstood. It is a trip through anguish and horror and a celebration of the minds that survived to make modernity.
Help more minds survive to make modernity and a more inclusive world. Choose the language of acceptance over the language of accommodation. Years of fighting for accommodation of my chronic pain and sensory overwhelm fed my anxiety and burnout. Years of tilting at thoughtless ableism have exacted a toll. With compassion and acceptance, more minds will survive and thrive and create.