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.

On silencing the neurodiverse in “woke” organizations

hypocriteIn my last post I addressed the problem of white-savioring and gatekeeping in social justice movements and non-profits.  Now I want to discuss otherizing behavior toward those with neurological differences in the same spaces.

For the past year I’ve been attending and helping out on several local committees and in non-profits which have an open-door policy, meaning anyone willing to help is allowed to attend. (Some of these orgs are for women only, though.) If that’s not the case then they don’t know how or where to express exclusivity – other than by shutting down “interlopers” through hostile interrogations, passive-aggressive bitchery, scare tactics, and conversational stonewalling. All intended to get me to stop participating or say less.

It’s not going to work. I have no qualms about embarrassing myself. I’m not participating to be popular or make friends. I’ll never stop expressing my perspective because my story has immense value.

Invariably, I have been transparent about who I am, what my diagnosis is, what my experience is, what my intentions are, and exactly how I can help. I’ve always observed the behavior and responses of neurotypical people, not just for shits and gigs, but for my continued survival. Their responses to meeting me are incredibly varied and fascinating – and often depressing.

Throughout my life, people’s responses have fallen into three extreme categories:

  1. Deep admiration – Since I have raised my public presence by speaking at symposiums, attending council meetings, and re-partaking of the fun social events happening in my hometown, some people have really taken to me and are not shy about expressing their admiration for my resilience, intelligence, and personal insight. Because they decided to hear me out before passing judgement. These people tend to be the best types of people, the most compassionate, the most inclusive, and the most intelligent, well-read, and genuinely woke.
  2. Open hostility – People who are honest and enthusiastic can be terrifying to those who are full of shit. Fear of the unknown and frustration with different social presentations make immature, territorial, and socially-obsessed people uncomfortable and prone to all the myriad forms of bullying and exclusion. I dismiss these types of people out of hand. They aren’t ready to help anyone yet. You can’t harbor contempt for one group of marginalized people and effectively help another marginalized group. (BTW, I include passive aggressive behavior in “open hostility,” because, although more subtle, it’s still pretty visible to others and obvious to me.)
  3. Confusing ambivalence –  I can’t decide who is worse; people who privately befriend me, but publicly deny supporting me, or people who’re kind to me when others are around, but quietly bully me. They both do harm and need to make up their goddamn minds.

The entire time I was growing up I received extremely polarized messages about who I was. Since I spent most of my time without positive friendships to counteract these messages and put them into social context for me, I never developed a clear sense of identity or voice until rather recently.

My current “social presentation” is that of a nervous, enthusiastic, honest, and non-conforming young, white woman. No one immediately supposes I’m a person with autism or a survivor of the criminal justice system and police brutality. I seem like a weird white chick who’s probably not experienced any deep prejudice and is trying to horn in or “insert” myself. I get it. I’m very forward, but I don’t like to waste my time or the time of those in need by being peripheral, coy, and “appropriately” female and white. Either you understand what I have to offer or you don’t want to.

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But actually I’m not all that nervous (it’s just how I talk as an autistic), I’m not that young (I’m over forty), not that female (I reject the gender binary), and not that white (I was never accepted among white people; not even in my own family). The rest is accurate. You see, people fundamentally misunderstand who I am based on superficial observations.  Adult autistic women and minorities are by far the most marginalized people you will ever meet – we are barely known to exist. We have insanely high rates of poverty, suicide, sexual assault, hate crime victimization, early death, addiction, homelessness, police brutality, and unemployment.

No fucking joke, either. Here’s some info from the links above:

  • Autistic girls and minorities are likely to be misdiagnosed with multiple incorrect disorders rather than autism because the diagnostic rubric is for white boys.
  • Half of all adults who have experienced at least one year of poverty are disabled,  and two-thirds of those with longer periods of poverty have a disability.
  • Compared with the general population, adults with Asperger’s syndrome were nearly 10 times more likely to report suicidal thoughts. 66% of newly-diagnosed adults obsessed about suicide. 31% planned or attempted it.
  • “Rates of autism among the homeless population are 3000% to 6000% higher than in the general population – a percentage so overwhelming I don’t have words adequate to express my outrage.” 65% of the homeless in Devon, England were diagnosed with autism. In America, autistic homeless are misdiagnosed with mental illnesses.
  • The disabled are 1.5 times more likely to be a victim of violence than those without a disability, while those with developmental disabilities are at nearly 4 times the risk of experiencing violence. And much of that violence is extraordinarily cruel and sadistic.
  • A new study from the American Journal of Public Health found that the average life span of an autistic person is 36 years. Up to 50 years for “high functioning” Asperger’s. Suicide and neglect are the main factors.
  • “Yet a whopping 85% of college grads affected by autism are unemployed, compared to the national unemployment rate of 4.5%.”
  • Over 83% of women with developmental disabilities are sexually assaulted, over half of those more than 10 times. One third of men are.
  • One-third to one-half of police shooting victims are disabled – not mentally ill – disabled. Mostly in ways that are not visible – deaf, blind, or mentally affected.

Most woke people are unaware of what me and my brothers and sisters on the spectrum face. Bias is especially discouraging in spaces where the people feel they are aggressively open-minded and inclusive. They are usually not when it comes to neurodiversity. I either get a chance to “explain myself” and educate them about the cutting edge of civil rights or they dismiss me out of hand and shut me down or undermine me from then on.

Perhaps I expect too much from normals.

A lot of young social justice folks are also in it for less-than-noble reasons: for social perks, dating, self-exoneration from white supremacy, exploitative recognition, and absolution by the oppressed. Grow up.

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It’s like being back in 8th grade.

[Important note to the “woke” whites: Black people don’t owe us absolution or comfort for our inherent white supremacy and remorse over it. They don’t have to reward us with social acceptance for virtue signaling in the right way. They don’t have to put you at ease about the kind of white person you are. Stop trying to get them to hang out with you. Let them decide if you are the type of white person they want to know better.]

Above all fellow do-gooders, examine your motives and actions very deeply when you are advocating for a group of people of which you are not a member. “Getting woke” is a deeply uncomfortable, tedious process that should last your entire life, not a few realizations in your twenties that give you a pass on shouldering the onus of white supremacy while indulging all your other ignored biases.

Your contempt silences the geniuses in your midst.

 

 

 

 

Why it’s not cool to roll your eyes at awkward people

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For a while I’ve wanted to discuss one of the most frustrating aspects of having a different social presentation: gestural aggression. What’s that? It’s something just about everyone engages in on a daily basis. I’m not talking about obscene or threatening gestures. I mean the ones that we drop into conversation to let the other person know that they are mildly perturbing or that they are crossing an invisible boundary. It includes all sorts of “shade” –  huffs, sighs, arm crossing, and, of course, the eye roll. These actions can often accompany snarky, muttered, or condescending remarks.

Although this sort of passive-aggressive body language is the expert territory of teenage girls, I see people of all demographics and cultures using this suite of gestures. This is not so much a form of instinctive communication as it is a form of learned social and conversational policing by those who are more able to conform to the unspoken expectations of the interaction.

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Although sometimes an eye roll can be priceless.

For instance, I tend to get eye rolls when I get “overly” enthused during an interesting conversation. Interesting conversations are few and far between for me at times, so when I find myself speaking to someone about a favorite topic I can get “carried away” and go on excitedly after the other person is ready to speak again or change the subject. This is par for the course when dealing with an Aspie and we all do this regularly, but there are consequences that others might not be aware of.

When people roll their eyes at me it hurts, and though I don’t read body language as instinctively as others, no eye roll ever escapes me. I can fucking hear them. I just have no earthly idea how to respond in real time to something that feels so hostile to me when I am sincerely trying to be as agreeable as I can.

An eye roll says, “You are weird and inappropriate and are now on thin conversational ice.” It says, “I don’t have enough respect for you to be patient with you. You are not worth listening to.” Once more I am quietly “told” that I’ve somehow screwed up my talking again and another person is growing tired of me.

While one eye roll or exasperated sigh isn’t enough to derail my mood, the silent censure adds up and I get the overall impression that regular people don’t want to interact with me as much as I want to be included. Gestural aggression sends a harsh message over time that you are not welcome or tolerable. It makes you more nervous and less confident when you try to talk to people later on.

Don’t get me wrong: I know better than most that conversing with a socially impaired person can be laborious and frustrating. I try to make it easy on other people I’m around by putting forth a monumental effort to not draw any eye rolls or bore anyone. I consciously, meticulously try to match the tone, topic, and appropriateness level the other persons sets. I make an effort to let the other person have their say without compulsively interrupting.

But it’s exhausting, and I don’t always succeed. Paradoxically, I can police my own social presentation better when I’m less familiar with someone, but as I grow more comfortable my more exasperating conversational differences start creeping in because I feel safe being myself with that person. In the past, those people to whom I let slip my awkwardness may become confused and annoyed and pull away. Let the self-flagellation begin!

I want the socially traditional among us to understand that most weirdos are doing our damndest and attempting to offer something of our carefully guarded, loner selves to other people. I long for positive interactions and better communication skills, but when people express conversational disdain and censure, it derails those attempts to not be an isolated, squirrelly freak. And it’s not my fault.

I’ve watched so many otherwise kind people rudely shut down the conversational efforts of those autistic or simply awkward people they have decided not to extend social tolerance to. This is an insidious form of ableismPeople mostly think of ableism as being insensitive to those with physical disabilities, but people with invisible disabilities – like social and communication disorders – are still boldly discriminated against by even those who love them using social judgement and unconscious exclusion.

What I’ve discovered in my own long history of talking with other awkward people is that it’s entirely worth the extra patience and occasional misunderstanding to get to know the fascinating and insightful people trapped behind uncool exteriors. Please try to meet us part-way because enjoyable, meaningful communication always depends on the efforts of everyone involved.