Thought Experiments for Autism Experts

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I spoke in my last post of the recent meeting I had with two neurotypical clinicians teaching a class on the psychology of autism, and how it did not go well. To recap, I had two neurotypical [not autistic] people disagreeing with my perspective as an autistic. To understand why this is so insulting, let’s imagine a demographically different scenario:

You are a black person who has just learned that two white people, who claim to have studied black people extensively, are teaching a class called The Black Experience in America for the first time at your local college – to a bunch of white students no less. You learn that they have not consulted with any black people about what will be taught or considered the perspectives and writings of actual black people. All their knowledge comes from external observations of black people by white people in clinical and institutional settings or from observing black children they have adopted.

You go in and find that they have left out every instance of black achievement, the concerns of black women and black LGBT+ specifically, and have concluded that black people would be better off if they could figure out how to act less black. You try to explain that the only accurate, expert perspective is that put forth by actual black people who have lived in America.

Yet, the white professors insist they are the ones who are closest to the truth of your own situation. They act like you took a dump on their desk for daring to suggest that it’s OK to be black and not be judged as inferior for it.

Not listening to people who are living in the skins or minds or bodies that you study and claim to uplift is useless at best and genocidal at worst.

You explain, calmly, that harms have been done to the black community by institutions and white supremacy and that this needs to be covered in the course material as well. They think that whites are perfectly fair and that racism is a thing of the past. They doubt you, debate your base of researched knowledge, and dismiss your inside observations of the black experience and what the consensus is among African-Americans on key issues. Once again they list their credentials as white experts on black people and question your sanity and intelligence. They insist that black Americans must be misperceiving their own lives and minds.

“But . . . Im black,” you insist, but they continue to teach the class from a white supremacist perspective.

That’s how my conversation felt, because it was the neurodiverse vs. neurotypical/ableist version of the scenario I described. See how messed up that is? [I want to mention that black autistic people do exist, even though they are never included, and the difficulties they face at their intersection are many times worse. Few of us lead single-issue lives.]

It also felt like having a dude mansplain feminism. Absolutely ridiculous.

Much as black people and women are often presumed to be incompetent, even concerning their own perceptions of themselves, autistic people are constantly rebuked, silenced, belittled, and contradicted when we tell others what it’s actually like.

Another parallel: Our white experts on blackness have concluded that blackness is tragic because it can lead to being shot or locked up in jail. Consider this: the  origin of “autism” is ‘from the Greek word “autos,” which means “self.” It describes conditions in which a person is removed from social interaction. In other words, he becomes an “isolated self.”’

Saying that most neurodiverse people have autism or “isolated-self-ism” is like saying black people have “lynch-ism.” We are identified in name by an involuntary consequence of our own oppression and otherization.  The oppressor is linguistically erased. Please note that no one is lynching autistic people or gunning them down like black people; yet autistic people, because of our stigma, are being murdered, are the frequent targets of hate crimes, face discrimination in every imaginable sphere, and we have a bad habit of killing ourselves when we lose hope of human connection. The end consequences of different types of marginalization are often chillingly similar.

But who’s most responsible for this autistic state of being? The autistic person or those who see them as unacceptable? The person who is different or those who have made being different dangerous and lonely? Autism is simply a catch-all term for a wide range of neurological differences that non-autistics find mysterious, confusing, and off-putting. So they actively shut out people with these differences.

Saying that most neurodiverse people have autism or “isolated-self-ism” is like saying black people have “lynch-ism.” We are identified in name by an involuntary consequence of our own oppression and otherization. The oppressor is linguistically erased.

Every autistic person has the capacity to enjoy some, even if not much, human interaction. Most of us desperately wish for closeness, relationships, friends, and social communication. We are not inherently isolationist. This is because the majority-rule humans won’t meet us part-way and learn our neuro-culture and language as we have had to learn theirs. The communication gap is as much their fault as ours, but all the blame and onus to change falls squarely on us.

This is where autistics are shaking up the public perceptions of who we are and what we need – and clinicians and other self-appointed institutionally-backed “experts” are refusing to listen to the growing chorus of neurodiverse voices on blogs, in TED Talks, on YouTube channels, in print media, and in public and professional sphere. Much as black people are often presumed to be incompetent, even concerning their own perceptions of themselves, autistic people are constantly rebuked, silenced, belittled, and contradicted when we tell others what it’s actually like.

Clean your fucking house, clinicians! Stop destroying the public perception of us and have the integrity to evaluate the harm you have perpetuated and embrace our neurodiversity-positive perspective.

Not listening to people who are living in the skins or minds or bodies that you study and claim to uplift is useless at best and genocidal at worst.

On Talking Down to People with Asperger’s Syndrome

My attempts to blaze a trail for neurodiversity rights in America largely consists of me awkwardly introducing myself to key people, online and in person, who might prove to be valuable allies. I tell them my backstory and then present my neurodiversity-positive perspective to them. If they see the light, they see it; if they don’t they are just awful to me. 

At the college I graduated from (finally, with no accommodations whatsoever), a new class is being taught by two women, a psychologist educator and a clinician, on autistic psychology. I contacted them to have a sit-down to see if they were on the same page as me and therefore willing to be resources and allies. 

It didn’t go quite like I’d hoped.

I introduced myself as an autistic rights advocate. The Educator was friendly and welcoming, if a bit maternalistic, and perhaps this is because she has an autistic son. However, she invited her teaching partner for the class, the Clinician, to sit in on our conversation. I’m not as good at speaking with more than one person to keep track of, but what I have to say is important so I agreed. After going along in my spiel for a while, the Clinician interrupted me as I was finishing up the grittiest part of my tale, and in a voice dripping with condescension, preceded to ask me, like I was a dumb neophyte, what I thought I was really going to do to advocate for autistic people.

In fact, her tone was so acid, I had difficultly understanding for a moment what she was getting at. What she was “getting at” was confirming the power imbalance between us by trying to insult my efforts and enthusiasm. I admit, I had criticisms of how her profession has harmed people like me and how clinicians frequently don’t listen to women who come to them with a suspected autism diagnosis. I spoke of how clinicians are prone to over-pathologizing people with neurological differences rather than working with us to figure out how to navigate our cognitive profile and cultural variance. 

If you are a professional who balks at this, I think you are the one who has developmental difficulties. An important aspect of growing as a professional is being willing to heartily consider the perspectives of the very people you purport to study and help. Clinicians, researchers, nonprofits, and parent organizations have been belittling, nay fighting, the ideas and concerns of autistic adults for quite some time – intellectual disability or not. 

In addition, I’ve spent the last couple of decades living as a person people took to be a normally developed adult woman. Now that I disclose my diagnosis to certain folks, I am amazed at how differently I am addressed and spoken to. Some people take on a parental tone and some speak to me as if I have an intellectual disability. Some are sarcastic or pandering, not understanding that I can easily pick up on this, but not react to it immediately. In truth, I’ve been independently navigating the adult world with no accommodations or mercy for over 25 years and I think out my actions and projects to an insanely meticulous degree. 

[Note: Please speak to all developmentally disabled adults, whether their intellectual abilities are compromised or not, as if they are adults you respect and value. Always. Even when we say things that might seem uncouth or too blunt. Doing otherwise is ableist. If we screw up and insult you, a simple “Hey, I didn’t like this thing you said because it implied this and made me feel thus” is perfectly adequate. We value this kind of feedback because being able to get along with others is important to our survival, assimilation, and self-advocacy.]

However, when it comes to speaking the truth about the urgent issues that autistic people face in America, especially in the deep South, I’m not going to sugar-coat our perspective and its validity. Sorry if it makes you uncomfortable, but people like me are accustomed to being uncomfortable all the time. Welcome to our world. 

Sadly, these condescenders are the same folks who ought to be the ones advocating for our perspective. Ableism runs deep, however, especially in the medical profession. When the patient is cognitively or socially different, the patient is always wrong, mistaken, or misperceiving the situation. There are many phrases and euphemisms to express to someone that you don’t value or believe them, and maybe even think they’re crazy and misguided. 

What gives me confidence in my perspective is the chorus of voices I have encountered since taking up this cause for myself and others like me. Women in the autistic community write beautifully about their experiences, both internal and external. We have a style that transmits clarity, grace, and a heaping helping of blunt-force truth. We are consummate communicators, given the right method, and this is one of the major differences between autistic males and females. [Interestingly, the two women didn’t even directly cover gender differences in an entire semester.] 

We know how to spell shit out for normals is what I’m saying. 

Problem is, no one is deigning to listen. No one is seeking us out for our opinions. No one is giving us any funding, marketing, or nonprofit money to further our cause. We all know now that women and minorities have a hard time getting people to believe what they experience. Imagine how having a stigmatized brain condition and being female complicates this. Add on not being white and/or being queer and you can understand why our suicide rate is shockingly high. 

After explaining to the Clinician the various direct actions and programs we need in our community to mitigate our suffering and how I’ve been avidly building a network and platform for three years, I hope her misgivings were assuaged. But, boy, it left a bad taste in my mouth. I hope they heed my words and give my ideas a bit more study . . . 

One mean-ass old white woman down; a bazillion to go.