Autistic Anxiety and the Ableism of Accommodation

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 …

Source: 7 activists tell us the best thing about living with autism

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.

Source: What If the Tables were Turned – Everyday Aspie

“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.

November Education Reading

Without inclusive education in schools, we can’t build inclusive workplaces. — Ari Ne’eman

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To be defined as abnormal in society is often conflated with being perceived as ‘pathological’ in some way and to be socially stigmatised, shunned and sanctioned. Then, if there is a breakdown in interaction, or indeed a failed attempt to align toward expressions of meaning, a person who sees their interactions as ‘normal’ and ‘correct’ can denigrate those who act or are perceived as ‘different’ (Tajfel & Turner, 1979). If one can apply a label on the ‘other’ location the problem in them, it also resolves the applier of the label’s ‘natural attitude’ of responsibility in their own perceptions and the breach is healed perceptually, but not for the person who has been ‘othered’ (Said, 1978).

Source: A Mismatch of Salience | Pavilion Publishing and Media

Software didn’t eat the world: it bent the world to fit the values of people who make software.

Little bugs were mistakes in the software. Big Bugs are when we exacerbate (or cause!) major problems in society.

Software that exacerbates racial biases in the criminal justice system is a big bug. Security policies that put sensitive data from hundreds of millions of people at risk are a big bug. Apps that secretly spy on users (including, yes, Beyoncé) have big bugs. Undermining trust in legitimate journalism and exacerbating fake news? Yep, that’s a big, big bug.

We think it’s time that a new generation of coders tries to tackle this even more important set of issues around access, equality, equity and basic fairness. And the clearest way we can state it is very simple: Software matters.

Software Matters in the World – Fog Creek Software – Medium

The issue here is that laptops in the classroom represent the first real chance at Universal Design for Learning – the first real chance to allow every student to choose the media format most appropriate for their own needs – the first real chance for students who are different to be accommodated without labels, and I’ll be damned if I’m willing to give that up for the vanity of a few faculty who cannot figure out how to teach with the greatest information and communication tool humans have ever developed.

SpeEdChange: Humiliation and the Modern Professor

But I just want to add that banning laptops is illegal if it interferes with the learning needs of students diagnosed with disabilities and is critically unfair to students with issues who lack the resources necessary to be diagnosed.

A public university like the University of Michigan needs, as a matter of service to its students…

You cannot counter structural inequality with good will. You have to structure equality.

The classroom is one of the least egalitarian spaces on the planet. Freire and hooks insist that it is in the traditional classroom that students “learn their place.”

An “Active Learning” Kit: Rationale, Methods, Models, Research, Bibliography | HASTAC

Findings suggested that when the preschool teacher and child were of the same race, knowing about family stressors led to increased teacher empathy for the preschooler and decreased how severe the behaviors appeared to the teacher. But, when the teacher and child were of a different race, the same family information seemed to overwhelm the teachers and the behaviors were perceived as being more severe.

Implicit bias may help explain high preschool expulsion rates for black children | YaleNews

But even if this comes to pass, this is not an example of innovative disruption. It is instead the endpoint of a process that seeks to substitute credentialing for learning.

There’s nothing innovative about such a radical shift in values working in combination with simple neglect to destroy something we once felt important and enduring.

Disruptive Innovation? More Like Destructive Innovation. | Just Visiting

But they did not count on the power of children’s instinct for dissent. The wild mind strives to protect itself the way a horse under saddle does, with a thousand strategies of resistance, withdrawal, inattention, forgetting; the children won’t do what the authorities say they should do, they won’t learn what the experts say they must learn, and for every diligent STEM-trained worker-bee we create there are ten bored, resistant, apathetic young people who are alienated from both nature and their own chained hearts.

Source: On the Wildness of Children — Carol Black

The primary form of child abuse is really shaming.

Patriarchy has no gender.

Parenting is political.

Think about how much more common the abuse of boys is than people want to believe.

Source: bell hooks on the Roots of Male Violence Against Women | NewBlackMan (in Exile)

Now I, personally, had a keen interest in the content of this presentation, but almost immediately I found my focus shifting to how it was being taught. I’ve been critical of an over-reliance on lecturing — along with other features of traditional instruction — for years. But that afternoon infused my long-standing skepticism with a fresh intensity. Why on earth would we think this arrangement — teacher in front of the room talking, students sitting silently and (ostensibly) listening — ought to play a central role in an institution whose goal is to promote learning?

To question the effectiveness of lectures is not to deny that teachers know more than students do, a common straw-man objection offered defensively by traditionalists. Rather, it suggests that having someone with more information talk at those who have less doesn’t necessarily lead to that information’s being retained by the latter. And the more ambitious one’s goal, cognitively speaking, the less likely one is to reach it by having students sit and listen. This is true because we are not empty receptacles into which knowledge is poured; we are active meaning makers.

Reading the research about lecturing is one way to realize the current system doesn’t make any sense. Another is to sit in the back of a college auditorium and watch rows of students updating their Facebook pages or shopping for shoes while a professor plows through a slide deck. In any case, if an hour or two of sitting still while someone pours words in your ears rarely produces lasting intellectual benefit, how can we justify a system of higher education whose uncritically accepted premise is that it does?

Source: Don’t Lecture Me! – Alfie Kohn

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An Actually Autistic Review of “To Siri with Love”

I’m an autistic parent of autistic kids. I feel sorry for Gus, not because he is autistic, but because his primary caregiver is a dangerous and poisonous person who dehumanizes and demeans him. This book is deeply ableist and eugenicist. It is full of ableism and emotional abuse. It is the toxic distillation of autism warrior parent pathologies. Gus is treated like a project, not a person. No one should treat a kid like this, autistic or otherwise. Reading without retching and crying is hard.

This book is harmful. It compromises the safety and security of autistic people. It contributes to social biases that prevent autistic people from getting the support they need. Almost everything it advocates is contrary to the recommendations made by autistic people themselves.

Autistic people, like all people, need acceptance, patience, and love. We don’t need to be fixed. We need to be accepted. First and foremost, we need to be accepted by our own families. We need to feel loved and safe in our own homes. We need respect for our stims, our special interests, and our privacy. This book is devoid of such respect.

That this book has gotten so many good reviews betrays a societal lack of empathy and critical capacity. A pernicious stereotype about autism is that autistic people lack empathy. To be openly autistic is to encounter and endure this supremely harmful trope. One of the cruel ironies of autistic life is that autistic folks are likely to be hyper-empathic. Another irony is that neurotypicals and NT society are really, really bad at empathy and reciprocity. When your neurotype is the default, you have little motivation to grow critical capacity. Marginalization develops critical distance and empathic imagination. The truly empathically impoverished are those who think treating any human being the way Gus is treated by his own family is acceptable. This book disturbingly illustrates the double empathy problem.

I recommend the piece “How ‘Autism Warrior Parents’ Harm Autistic Kids” on The Establishment. It has the number of this author. It describes the stereotypical Autism Warrior Parent that is all too familiar to autistic people. This book is peak Autism Warrior Parent. Do not be like the author. Seek instead the actually autistic community. We are the ones best equipped to help. Find us in the #ActuallyAutistic and #AskingAutistics hashtags on Twitter and other social media. Read our impressions of this book in #BoycottToSiri.

I’ll conclude with some relevant quotes from “How ‘Autism Warrior Parents’ Harm Autistic Kids”.

Autism Warrior Parents (AWPs) insist on supporting their autistic kids either by trying to cure them, or by imposing non-autistic-oriented goals on them — rather than by trying to understand how their kids are wired, and how that wiring affects their life experience. Ironically, an AWP’s choices not only interfere with their own kid’s happiness and security, but contribute to social biases that prevent autistic people of all ages from getting the supports they need. Worst of all, by publicly rejecting their own children’s autism and agency, and by tending to hog the autism spotlight, AWPs are partially responsible for the public’s tendency to sympathize with parents rather than autistic kids — which, at its most extreme, can mean excusing parents and caretakers who murder their autistic charges.

Autism Warrior Parents are those who, for whatever reason, refuse to accept their autistic child’s actual reality and needs, and instead put their energies into absolute change or control of that child.

I suspect the main problem with Autism Warrior Parents is that, in treating autism as something to “fight” or “defeat,” they commit themselves to battle with an important part of their own child’s life.

Enmeshed in fear and loathing toward autism, they (AWPs) condition themselves to forget that their children are fully human, and that humans respond best to compassion.

For more pull-quotes, see this thread.

I often write on neurodiversity and the social model of disability. The social model is the antidote to the AWP mindset. Neurotypical parents, life for you and your autistic loved ones will get better once you accept the social model.

I posted this review on Goodreads and Amazon.

Reviews by other autistic folks:

Tweets and threads by autistic folks:

Image text:

“Arguing with an autism mom about autism is like arguing with an astronaut about what it’s like to walk on the moon.”

“No, it’s like arguing with an astronaut’s mom about what it’s like to walk on the moon.”