I Don’t Know My Own Father

I don’t know my own father. I have never actually known him. Growing up, he was just there among us. After high school, I wanted nothing more than to run far away from what we all grew up in, and I did for the most part. I don’t yet know how much I regret that. But nobody really knows what it was like growing up in our house. Nobody understands what we all tried to escape. My entire family has been on and off antidepressants for years with mental illness to one degree or another. I know that when my dad dies, I will do my best to remember the few good memories, almost all of which originated in elementary school and ended by middle school. I will offer a side to his story that his own siblings know little of. It’s not all bad, it’s just very complicated.

But as his health deteriorates, the chances that anything will be resolved between us become remote. In fact, there is no chance at all. I put twelve years of distance between us when I moved to North Carolina in 2005. Several years later early signs of dementia began to creep in. Twelve years later, there is no longer any way to resolve the problems we all faced growing up. Even if he could understand, I’m not yet able to put into words what I need to say to him because I don’t yet know what it is I want to say. I forgave him some time ago for an incident of physical abuse, though after it occurred we never spoke of it again. I know I was not innocent in provoking it either. I blame the overwhelming circumstances we were all living in at the time that contributed to it, like a powder keg, and which ultimately led to permanent estrangement that persists to this day. 

After he is gone I will need to come to terms with the overwhelming guilt and regret that has plagued me for years. I went a long time trying to figure out why things were the way they were. Why could I never develop a relationship with my own father, no matter how hard I tried or wanted it? What went wrong and when? What stood in the way? Was it me or him or both of us? Fortunately I have some answers to those questions now, but they came too late. The damage was long done. I don’t blame him anymore, and I try not to blame myself either. But the problem is that I see him in myself all the time. In everything I do, even down to the identical sounding way I laugh around other people. I see him in my actions and I see him in my failures, as I relive some of the same difficulties he faced. And as much as I wish I could shed his influence, I know I cannot do this. 

Some of the good memories I have are from when I was younger. He taught me things and fostered interests in things that I still have interest in to this day. Because of autism no social/emotional relationship ever really developed between us. I myself am unable to relate to people in this way, so I do not blame him for that at all. But this is a recent realization. For most of our lives, we grew up with no understanding at all of why he was the way he was. We saw a socially and emotionally distant father, sometimes may as well have been absent. There was a wall between us and none of us knew why. And ongoing marital conflict complicated everything further. I had both parents vying for my support, to back their side of the story over the other. Two parents who wished to pit us against the other. I didn’t know which side I was supposed to be on, but I turned on him anyway. That was an impossible situation to be forced into and I don’t know that any other kid would know how to deal with it any better. I’ll never let go of the regret I still live with for that even if I know it wasn’t my fault. 

After I went away to college for the first time, my dad did try to reach out to me via letter. I never responded to him. Of course I saw him in person after that, but I never responded because I didn’t know how to. And I will also never stop regretting that. Time and distance, perhaps a lot of it, were required for me to come to an understanding of what I couldn’t do at the time, because my focus was solely on escaping my childhood, my high school years. It is now too late for us to come to terms with any of it. And I will not try because it is far too difficult even now. I don’t know my dad and I never really will. I have never had a relationship with him and won’t ever now. He regrets this and I know it. He lives with far more regret than even I do. Even given his increasingly limited cognition he recalled an incident from Christmas many years ago involving my brother that I have no recollection of myself, but which he brought up in conversation to express his regret anyway. He very likely lives with much more weighing on his mind than anyone is aware. And because of his inability to communicate normally with any of us, will go to his grave never having resolved any of it. For that I can do nothing but say that I forgive everything and I’m sorry our lives worked out the way they did. 

Living With Depression

Depression is back again with a vengeance. I’ve recently stopped one medication and started another in hopes that something new might work better. But being off the medication I relied on for so many years has brought my worst symptoms back. I feel overwhelmed by everything, even minor things, like I’m walking around with a crushing weight on my shoulders. If only I could describe it in a way that other people who’ve never experienced it could understand. When my worst symptoms return, I feel a frequent need to cry. I have no energy. I see no value in anything, wonder why it is worth living anymore. And these are things that nobody will know I’m dealing with at any given moment because I’m an expert at hiding so as not to burden other people with my presence. Also, I don’t want anybody to know because I do not want to listen to unwanted advice about the need to exercise and attempts to “cheer” me up with positive outlooks that generally have the effect of a small desk fan in a hurricane.

Five years ago I was able to wake up for work and take a five minute shower. Now, I can barely wake up. When I get out of bed, I have that crushing weight on my shoulders. I move very slowly and unsteadily, like I have a chronic hangover. Every movement requires far more effort than it should. What once took me five minutes takes me no less than fifteen and often twenty now because I’m so drained of energy. I don’t want to wake up in the morning. I am the heaviest I’ve ever been in my life because of a toxic work environment over the last four years: because I’m chronically without enough money to eat anything other than fast food or other junk food, and because the easy proximity to cheap, unhealthy food at work has led to tremendous weight gain. I do not get a lunch break, and so eating on the go is often a necessity, or eating lunch early or very late because I had few other choices. I work with people who I’d never associate with if I had any choice. People who harbor a host of toxic ideas that make me want to run away and never go back. (I do not go to work to argue politics with coworkers and will not be told that I should. I go to work because I need money, that’s it.) I could describe so much more about my work environment that is personally toxic but it doesn’t matter. This is the best it is going to get for me right now, and that’s what is so difficult for me to accept because I know I’m capable of so much more.

I daily relive my failures. When my depression symptoms hit hardest, this becomes quite disabling. I relive my failures, thinking endlessly about what I could have done to change the outcomes, about how much I wish I could just remove myself from the personal hell I’m living now and start over. This often leads directly into the chronic feelings of needing to cry. The crushing weight hits me every two weeks when I get my paycheck and watch it disappear as fast as it deposited into my bank account. Whenever I read about other people suffering from depression being told that they must allow time for themselves, to do what they love, I laugh to myself long enough for it to turn to tears. Nothing that I want to do or love has mattered in a really long time. I’ve heard of coworkers taking “mental health” days. I cannot fathom this phenomenon. A “mental health” day because just need a “break.” Do they have paid mental health years to help me get my life in order?

I want another career direction, or just another job with a less toxic work environment. Because I do not really fit-in anywhere, around anyone, most work environments will unfortunately not work well for me. I’m not naive and realize that this is just something I cannot do anything about. I will never fit-in anywhere, something that autistic people live with for the duration of their lives. But I still wish I could go back to school and try again because my areas of expertise lend themselves to work environments far less toxic than what I’m stuck with now. The crushing weight of failure combined with the crushing weight of depression leaves me frequently feeling that killing myself would be the best way to alleviate the overwhelming pain. But I will never do it because I’m committed to my family, the only success I’ve achieved, and perhaps the only one that matters in the long run. I just cannot get past the overwhelming feeling that I could have achieved more. I gave up on my goals because it became obvious to me that it would require incredible sacrifice in my relationship with my partner, and would even likely require us to move elsewhere. She would have to uproot her life for me. Because of depression, I’ve never felt that anything about me was ever worth uprooting one’s life for. I’ve never felt like I “deserve” anything. I’ve always seen myself as a burden to others. I’ve never expected anyone to sacrifice for me and wouldn’t even understand it if somebody did. But this is who I am and has been since my high school years. I’ve always put aside everything I wanted because I felt like I didn’t deserve it regardless. This sounds incredibly irrational to other people, even “crazy.” But I don’t know how to think any other way. When you have zero self-worth, live in constant states of despair, how else can you see yourself? I’m not recovering from depression, I’m still living it. I just want to learn to cope better, to help me put aside feelings that I can do better, because right now I know I can’t.

 

 

 

 

“Autism diagnoses are handed out like candy on Halloween”

Heard this one before? It’s a variation on the same war cry of baby boomers railing against the over-medicating and over-diagnosing of kids today. Ever talk to a baby boomer? “Back in my day, blah blah blah, blah.” Because I’m autistic with severe attention deficits, I generally only hear “back in my day.” The rest is usually a blur as I immediately turn my attention to more important things, like what I want to eat for lunch.

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“Back in my day we didn’t have all of these chronic shenanigans…” says the totally legit Mom’s Across America.

But it would be unfair to suggest that all baby boomers are this naive and shallow. Because, ironically, many of them have these “chronic illnesses,” most undiagnosed. Because the science was still in its infancy in “their day” doesn’t mean researchers and clinicians have invented “illnesses” that didn’t previously exist. This means nothing to those who believe that Big Pharma and Monsanto are colluding to create an army of chronic behaviorally disordered, asthmatic, oppositional defiant, dyslexic, epileptic, hyperactive bots.

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Lord Supreme Commander of the lethal fidget spinning army. Fidget spinners all manufactured in a peanut-free facility.

But getting back to the original issue: are autism diagnoses really being given out to just about any nerd with a quirky personality? Ask any “autism mom” of a “low-functioning,” severely disabled child who thinks autism is way over-diagnosed because it doesn’t look like the “tragedy” they ended up with, and you’ll hear that autism diagnoses are somehow being given out based on superficial personality traits.

Ever seen the part of the diagnostic criteria where it says “[s]ymptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning”? 

I’m aware that using myself as an example is anecdotal evidence only, but allow me to provide the two people who will read this blog an example of what “clinically significant impairment in social, occupational, or other important areas of current functioning” means.

I’m an Emergency Medical Technician. I have no set workplace: it varies from one emergency scene to the next, and includes a lot of time spent in the back of a moving box that makes loud noises and has a lot of bright, flashy lights. It is often a highly stressful job. It would be a sensory nightmare for some, but only moderately impacts me. I absolutely abhor being on scene with large crowds and lots of eyes on me which makes my skin crawl if I don’t refocus my energy on the person for whom I’ve been called. My brain cannot adequately process the noise and information overload that I encounter on some scenes, like the double opioid overdose in which I was accompanied in a small room by two unconscious bodies and several EMS and fire department personnel, as well as screaming bystanders held back by police. My anxiety, which I exhibit internally for the most part, increases in any group of people that continues to grow beyond three people.

But here’s a concrete example of what “symptoms cause clinically significant impairment” means in an occupational setting:

This patient (no information will be given due to HIPPA) recently had a tracheotomy. Patient had mucus building that was partially occluding her airway. On our arrival, patient was worsening quickly. After patient was loaded into ambulance for transport, patient’s condition deteriorated as oxygen saturation dropped below 80%. Patient’s tracheostomy tube had to be suctioned with assisted ventilation via stoma, as this patient could not breathe via mouth or nose. With two paramedics in the back of our ambulance trying to prevent respiratory arrest, they were unable to provide a report over the radio to the emergency department and asked me to give it while driving.

I am a single-tasker. It is not that I can’t multitask when necessary, as in this case, but it is much more difficult for me to do. While driving as carefully as possible with two unbuckled people and a patient in the back with lights flashing and sirens blaring, there was a lot requiring my constant attention. Sensory input: sirens, though significantly muted being in the cabin, are still loud enough to be overwhelming after several minutes. Attention to the road–driving with lights and sirens is very dangerous because other drivers on the road are highly unpredictable and often do not know what to do when an emergency vehicle comes up behind them or emerges into an intersection–while also simultaneously processing the noise from the sirens becomes overwhelming after a few minutes. Then I’m asked to give a detailed radio report to the hospital we are delivering the patient to while trying to pay attention to driving safely and processing constant noise from the siren.

This radio report is usually given by the EMT or paramedic in the back currently attending to the patient and involves notifying a nurse at the hospital’s emergency department about the present condition of the patient, why 911 was initially called, what we were presented with on our arrival, all medical interventions done or in progress, and a list of pertinent vital signs or downward trending vital signs. Because I was driving and giving a report simultaneously, I had to dramatically shorten the information relayed to the hospital as coherently as possible, and quickly, which is very hard for me to do owing to the extra time I need to process a lot of information before speaking. Thus, my being autistic places roadblocks in the way of being able to spontaneously relay a set of information that was itself relayed to me by word of mouth from the back of my ambulance instead of being right in front of me, allowing time to process the information and mentally prepare the report in advance of calling the hospital like I normally would were I in the back with a patient. I had to mentally prepare a shortened version of the information that would normally be relayed while also trying to drive with lights flashing and sirens blaring.

I managed to give off an acceptable but very quick and short report (I forgot to include some of the most pertinent information because given the circumstances, my processing abilities failed me as I could not retain all the information I had in my head long enough for it to reach my mouth.) While giving the short and marginally adequate report to the hospital, I began veering out of my lane in the middle of a narrow downtown strip, causing me to stop speaking momentarily and get back in my lane, then continue with the report, though the flow of the information I had mentally prepared in a matter of seconds beforehand was lost, resulting in a disjointed flow of spoken communication because I could not simultaneously focus on safe driving with loud sirens hitting my ears constantly in the background and speak into my radio to relay information that I did not have in front of me.

I stopped a bit too quickly on approaching an intersection, causing the paramedics in the back to yell up at me to see what the problem was. The problem was that my brain experienced sensory and information overload, though I blamed it on a fictitious car that failed to see us approaching the intersection. Because I’ve been doing this for over four years now, I’ve developed coping mechanisms to help me through these situations, which admittedly do not occur that frequently, thankfully, like having to drive and give a radio report at the same time. Autistic people need more time to process information, and that means when I need to communicate with others, I cannot spontaneously engage in multiple tasks requiring my strict attention and still adequately communicate what needs to be spoken. For similar reasons, autistic people rely on scripts developed for various social situations owing to the fact that spontaneous communication is nearly impossible for us. In that particular situation, when my brain becomes overloaded, I will exhibit spontaneous twitch-like shaking of my head. It is something I need to do, and it looks odd, which is why I try my best to hide it. Because a lot of effort is expended trying to look as “normal” as possible.

Do I have a “quirky” personality? I’m not sure. I like space and round objects. That sounds weird I guess. But the fact that I have a minor obsession with the solar system and star categorization is not what will land me an autism diagnosis. Sheldon Cooper from The Big Bang Theory is an autistic stereotype, and he does not help us. When we talk about “invisible disability,” it means you cannot see it just by looking at us. Sheldon’s quirky personality is only one side of the story for some autistic people. You cannot immediately see the other side. No, autism diagnoses are not given out like candy on Halloween. I trust that the clinicians doing the diagnosing understand the diagnostic criteria better than non-autistic parents, leaving the problems with the criteria itself aside for now. When someone is diagnosed, there is likely a lot going on that you cannot and will not ever see with your eyes.

In a study conducted by 50 or 60 something year old local dads with zero scientific training, spanking emerged as the best way to cure behavioral problems. Says one of the researchers, while cracking open a “cold one,” “I hit my kid whenever he got out of line and the disobedience stopped.” The findings are expected to be published in the scientific journal Facebook.

Against Aspies

Are aspies the next evolution of the human species? Do aspies have super powers? No, No, No, and No. Also, No. Or, should I say that if this is true, I want none of it? Read on to find out why.

In 2013 the Diagnostic and Statistical Manual of Mental Disorders was updated to reflect changes in the way autism would henceforth be diagnosed. Gone was the separate diagnosis of Asperger’s Syndrome (among others), introduced just under two decades earlier in the DSM-IV. (Asperger’s Syndrome continues to be a diagnosis outside the U.S. where the ICD-10 is used instead of the DSM.) Please refer to this excellent academic examination of why Asperger’s Syndrome disappeared. But not surprisingly, aspies everywhere were upset. One teen was quoted at the time in a telling piece of journalism entitled Farewell to Aspies: Some Families Reluctant to Let Go of Asperger’s Diagnosis:

“Some of the most brilliant people had Asperger Syndrome, and you just can’t put that under the title of Autism,” he wrote in an 8th grade school assignment. “This disability, which is ironically not at all a disability, causes the recipient to be antisocial, physically weak … However, it is so much more. It allows a person to think in whole different ways, to see things in a different light than others.

Now if you thought I’d be going after a teenager, shame on you. But I quote him because this idea is widespread among “aspies” and I have problems with it. Not because I in fact think Asperger’s Syndrome is a disability, but because of the conclusions that some aspies draw in making these assumptions. Assumptions that are often held by some well-respected clinicians as well.

Nevertheless, I’ll say upfront that yes Asperger’s Syndrome is a disability depending on some important context that is curiously always missing. This context is almost always missing because of the overwhelming predominance of the medical model pervading disability discourse that not even aspies are immune from.

Yes, aspies, I have a problem with you. Admittedly, I too embraced the aspie identity at first, but quickly distanced myself from it upon realization of the company it was associating me with. I have a bone to pick, so to speak, with those aspies who reject the neurodiversity paradigm. You might be wondering: what aspie rejects the neurodiversity paradigm? Good question: the ones who continually wish to distance themselves from who they arrogantly see as actually disabled–the hopeless “low-functioning” tragedies on “the other end” of the spectrum. Two things: firstly, not all who identify as “aspie” harbor such nonsense and I am not talking about you, so don’t make it about you; secondly, though few aspies will admit it, you and every alarmist “autism mom” maintaining that autism is a modern epidemic of toxic exposure and/or vaccine injury reach the same conclusion despite dramatically different starting points: that autistics need be diagnostically segregated.

I’m so tired of hearing that you all think you have “super powers.”  I get it. You have your own highly selective interpretation of the neurodiversity paradigm that evidently only applies to you. (To be clear, the neurodiversity paradigm is not autism-exclusive, just to avoid any confusion.) You want to change the stigma associated with what “normal” people see as “abnormal” behavior so you can get ahead in your career, as though autism is somehow reducible merely to differing behaviors. But implicit in this is an assumption that you stand apart from the alleged tragedy and stigma of autism and logically require your own label to keep undesired associations at bay. You want the world to see your strengths instead of a long list of deficits. You want what sets you apart from the neurotypical world to be valued instead of scorned. It may come as a shock to some of you, but this applies equally to every autistic person whether they speak or do not speak or if they have intellectual disabilities alongside autism. Aspies are concerned with fighting the stigma that being associated with autism brings them rather than fighting the stigma which harms all autistic people.

But what better way to challenge stigma than to have a list in hand of famous autistic people to prove that we are actually valuable: musicians like Questlove of The Roots, Bob Dylan, James Taylor, actors like Dan Aykroyd, Daryl Hannah, Robin Williams, historical figures like Abraham Lincoln, Mark Twain, Beethoven, Mozart, Vincent Van Gogh, Marilyn Monroe, Albert Einstein, Isaac Newton, Benjamin Franklin, Thomas Jefferson, Benjamin Banneker, Isaac Asimov, Jim Henson, Andy Warhol, Emily Dickinson, Jane Austen, Nikola Tesla, etc. Leaving aside the fact that these lists are nearly entirely made up of white people, I object to any notion that we must catapult famous people to the forefront of any discussion around autism to justify our existence.

The psychologist who I went to see more than a year ago about an autism diagnosis practices at a clinic called Southeast Psych in Charlotte, NC. Southeast Psych is home to Asperger’s Syndrome expert and YouTube star Dr. Frank Gaskill. He has undoubtedly had a positive impact on autistic teens (he only sees kids up to age 18 to my knowledge). Autistic teenagers, like I myself once was though without any knowledge of it, struggle often very significantly with depression, anxiety, lack of self-worth, bullying, inability to make friends. For many teens, Asperger’s became their identity. Unsurprisingly, Dr. Gaskill and his “Aspie Nation” decried the removal of AS from the DSM in 2013. As a separate diagnosis from “Autistic Disorder” in the DSM-IV, it didn’t last even two decades, and the reasons for this are quite sensible to me.

Gaskill refers to aspies as “Human 2.0,” as the evolution of the human species. Aspies are not disordered Gaskill says, they’re different, and they should not have to be forced to socialize the way neurotypical people do. He believes our genes are essential to the progress of humanity. He lays this all out in a short five minute presentation on YouTube you can watch here. Aspies like Bill Gates, Mark Zuckerburg, Elon Musk, and other Silicon Valley exploiters… sorry, “innovators,” are the human species, evolved. This view is not unique to Dr. Gaskill. Being an aspie is apparently widely believed to put you a step above others in the workplace despite significant social difficulties. Says journalist Matt McFarland of the Washington Post in Why Shades of Asperger’s Syndrome are the Secret to Building a Great Tech Company:

The individuals who have founded some of the most successful tech companies are decidedly weird. Examine the founder of a truly innovative company and you’ll find a rebel without the usual regard for social customs.

This begs the question, why? Why aren’t more “normal” people with refined social graces building tech companies that change the world? Why are only those on the periphery reaching great heights?

If you ask tech investor Peter Thiel, the problem is a social environment that’s both powerful and destructive. Only individuals with traits reminiscent of Asperger’s Syndrome, which frees them from an attachment to social conventions, have the strength to create innovative businesses amid a culture that discourages daring entrepreneurship.

Drake Baer of Business Insider quotes Thiel further:

Peter Thiel — the PayPal founder, Facebook investor, and bestselling author — hates groupthink.

He avoids hiring MBAs, since he says they tend to be “high extrovert/low conviction people,” a combination of traits that “leads towards extremely herd-like thinking and behavior.”

Similarly, he says that “people end up behaving more lemming-like” in places like San Francisco’s South of Market neighborhood, where tons of tech companies are crammed into a .635 square mile area.

All that socialization leads to conformity, he argues, preventing people from coming up with original, innovative ideas.

To Thiel, originality is the name of the entrepreneurial game, since it’s the quickest route to gaining a monopoly, as he says Google did with search.

From that logic, he argues that a psychological condition usually thought of as a disorder — Asperger’s syndrome — provides a startup advantage.

If you ask Dr. Gaskill, what we need is more and more of these folks to “get girls” and have sex and a millennia from now we’ll be able to save our species from the doom that endlessly small-talking and chatty neurotypicals would obliviously lead us into.

Here’s a question Dr. Gaskill: what about the largely neurotypical people who line Silicon Valley aspie pockets? Perhaps we ought to talk about Tesla aspie CEO Elon Musk. One Tesla factory worker says “everything feels like the future but us.”

The appetite for Musk’s electric cars, and his promise to disrupt the carbon-reliant automobile industry, has helped Tesla’s value exceed that of both Ford and, briefly, General Motors (GM). But some of the human workers who share the factory with their robotic counterparts complain of grueling pressure – which they attribute to Musk’s aggressive production goals – and sometimes life-changing injuries.

Ambulances have been called more than 100 times since 2014 for workers experiencing fainting spells, dizziness, seizures, abnormal breathing and chest pains, according to incident reports obtained by the Guardian. Hundreds more were called for injuries and other medical issues.

Other of Musk’s workers have spoken out as well:

Musk’s account of the company’s approach differs from that of the 15 current and former factory workers who told the Guardian of a culture of long hours under intense pressure, sometimes through pain and injury, in order to fulfill the CEO’s ambitious production goals.

“I’ve seen people pass out, hit the floor like a pancake and smash their face open,” said Jonathan Galescu, a production technician at Tesla. “They just send us to work around him while he’s still lying on the floor.”

He was one of several workers who said they had seen co-workers collapse or be taken away in ambulances. “We had an associate on my line, he just kept working, kept working, kept working, next thing you know – he just fell on the ground,” said Mikey Catura, a worker on the battery pack line.

Richard Ortiz, another production worker, spoke admiringly of the high-tech shop floor. “It’s like you died and went to auto-worker heaven.” But he added: “Everything feels like the future but us.”

Here’s the reality, since we’re unlikely to get it from the likes of “aspie supremacists”: all autistic people can thrive in environments that allow for our strengths to flourish. The idea that we have super powers would be hysterical if it weren’t for the fact that so many aspies evidently believe it. But what you believe to be super powers is simply the fact that you may have found an environment that is suitable to your real (or perceived) strengths and abilities. And here’s another dose of reality: all of your Silicon Valley aspie exploiters “heroes,” like the vast majority of the capitalist class, have no super powers at all, they were either born wealthy or got lucky, or both, unlike the rest of us who have no choice but to go to work for them. Being an aspie does not make you a good CEO. It makes you an aspie CEO. Autistic or not, being a capitalist owner with grotesque wealth bestows a level of power that the vast majority of us will never enjoy.

 

So if aspies and their modern Silicon Valley heroes aren’t disabled, what counts as a disability then? The problem lay within the question itself, and that some people get to arbitrarily decide they’re not disabled while others are considered disabled based on subjective criteria laid out by clinicians. Real life is always more complicated than this.

Allow me to quote from an excellent piece published at Socialist Worker:

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Oh no, he’s autistic and a communist. The horror. 

Exclusion and discrimination toward people with physical or mental differences are not a natural consequence of human nature; impairments exist in a context where exclusion and discrimination based on impairment are permitted.

Under capitalism, it is very much the case that the labor market and the organization of work are fundamental components in the construction of disability as a social category. Inherent in the ideology and practice of capitalism is the idea that a person’s well-being is dependent on their ability to sell their labor for a wage.

Thus, physical and mental differences that preclude or interfere with performing wage labor are considered central to very condition of “disability.” The Social Security Administration of the United States plainly states on its website, “You cannot do work…This is a strict definition of disability.”

The issue here is not that aspies are disabled but simply refuse to see reality. The issue is that believing you are not disabled but rather different with super powers is a reflection of the “success” you’ve acquired being in an environment that more or less allows for your impairments to be less visible, like the aspie coders and engineers who work for other much more powerful aspies in Silicon Valley. If the environment is built around your needs, to whatever degree possible, like magic, your otherwise obvious disability can subside as you merely sync into the background. That is at least until lunch when some have to venture out into the real world and talk with some neurotypical in line who must “chat” like it is their job.

The vast majority of us struggle in jobs that are decidedly not suitable, with work environments that can be outright toxic for an autistic person. This is if you can even get a job considering the astronomical unemployment and underemployment rates for autistic adults. Every day I go to work I’m reminded myself in countless ways that I have a disability, and often I’m reminded by others when I’m told that I need to be more personable, more social, more talkative, smile more, be less awkward because it’s uncomfortable for neurotypical people, and yet I can do none of this short of requiring a real effort to hide who I am over and above the effort I already put in to mask my autism, and non-autistic people do not understand how exhausting this is.

Disability is not a hard line drawn in the sand, but a social construction in its entirety. This does not mean impairments do not actually exist that require support. But a reorganization of our society that makes basic subsistence needs a right of everyone will have no particular need for arbitrary social distinctions like physical or neurological disabilities. Certainly there will be no need for “gatekeepers” who get to decide who is properly disabled and who isn’t. All disabled people will receive the support they need with full accommodations met. Neurotypical people take this for granted because the world we are all born into has specifically been designed to accommodate your needs, no thought or knowledge that there are other people with different needs required on your part.

But right now, every autistic child, teen, and adult deserves to be accepted as autistic. All deserve the chance to flourish in an environment that fully values them no matter the severity of their disabilities, and even if it means they cannot produce surplus value for a corporate exploiter. Moreover, rather than fighting to liberate aspies who believe they’d be millionaires were it not for the neurotypical chains that bind them, I want a world that values the contribution of every person, disabled or not, which meets our basic subsistence needs as a right of us all, instead of the artificially constructed scarcity that forces us to fight each other over scraps while a handful, aspies among them, look on approvingly knowing our anger is not directed where it belongs, at them.

Our value as autistic people shouldn’t​ be based around a tiny subset who are believed to be uniquely positioned to run “innovative” Fortune 500 companies. There is no “Human 2.0.” How many non-autistic people, now and throughout history never had a chance to reach their full potential because they were born into lives of poverty, oppression, despair, or deliberately placed in chains and worked to death for an owner? Aspies are not awesome. Autistic people are simply part of the naturally-occurring variation that exists among the human species, just like the variation that exists among every other animal species on this planet. We need the chance to live the best lives we possibly can, and capitalism denies this to all of us, disabled or not.

Einstein: aspie socialist

When “Not Like My Child” Attempts Science

Jill Escher, head of the Autism Society of San Francisco Bay Area, appears to be an influential voice (or infamous in my estimation) for the autism community in California. Her blogs reach far beyond the San Francisco Bay Area. She is an autism epidemic proponent, which necessarily requires environmental causation determinism. This means that despite the overwhelming evidence that autism is both genetic and hereditary, environmental factors like vaccines and other toxic exposures like grandma smoking or herbicides or Escher’s pet theory around synthetic steroid hormone exposure, which mid-twentieth century was used to prevent miscarriage, become the autism cause par excellence just waiting to be discovered if money could be redirected into properly researching it.

To Escher, autistic adults and parents and researchers who stand by autism’s overwhelming genetic/hereditary origins are science deniers, leaving aside the fact that denying the existence of an “epidemic” does not require denying the possibility of environmental factors at play. On the other hand, Escher and the subset of parents she speaks for continually deny that there are actual autistic adults living among us most of whom remain undiagnosed because of the damage done starting with Leo Kanner’s identification in the 1940s of his “rare” childhood disorder. The “epidemic” theory of autism requires you to dismiss any notion that autism has always been with us, manifesting itself in a variety of forms with varying degrees of disability that could easily go unidentified when the proper tools to identify it had yet to emerge.

But the problem here is that Escher is more than just your average pathology paradigm “autism mom” with a blog. She’s a pathology paradigm “autism mom” in a position that lends her real credibility even if nearly exclusively among the autism community, which is separate from the autistic community, and being honest is the community that overwhelmingly sets the parameters of acceptable discourse around autism in this country. More than this, using phrases like “pathology paradigm” to accurately characterize her damaging ideas about autistic people won’t help because she firmly embraces it. She positively ridicules and dismisses the neurodiversity paradigm and movement. She describes Steve Silberman’s excellent book NeuroTribes as a mere phase that will pass, presumably once “experts” like her finally have the “smoking gun” study in hand that she’s just dying to beat us over the head with.

She believes that the DSM-5’s “lumping” together of Asperger’s Syndrome, PDD-NOS, and other previously separate diagnoses as all Autism Spectrum Disorder has created two separate autism worlds, those with brain damage (her kids) and those for whom autism is not a disability but instead confers a unique identity with intellectual “gifts.” What Escher wants is a hard line drawn between her non-verbal, intellectually disabled children, and those without intellectual disability. She wants the autism diagnosis reserved exclusively for her children and others like them–like my own son presumably. She pays occasional lip service to “high-functioning” autism only insofar as she must: in your formulaic run-of-the-mill “not like my child” blog post, “high-functioning” autism is usually mentioned with a qualifier, like “but,” which is then followed by a list of behaviors including feces on the floor or smeared on the wall (these parents love the feces smearing):

Yes, I will agree there are some on the mild end who can function fairly independently, but as a hallmark of their disorder often can’t hold a normal conversation, make normal eye contact, make friends, execute solid judgment, negotiate public transportation, fend off abuse, read subtle social cues, vary a routine, and/or hold a job. Even this form of so-called “high-functioning” autism is debilitating, with most individuals needing at least some form of lifelong supervision and support. But for the most part, people with autism are even more incapacitated, such as my friend’s 12 year-old son who regularly attacks his parents and siblings and typically spends his days flicking pieces of string in front of his face. Or my friend’s 18 year-old son who can have a brief conversation but is now 6’ 4” and easily slips into rages involving things like hurling televisions across a room. My friend’s autistic daughter, 17, has some words but cannot attend to her own menstrual periods or personal hygiene, and defecates on her floor.

Escher and the parents she speaks for want changes to the diagnostic criteria to separate their “catastrophically” damaged kids from everyone else.

Autism has degenerated into a philosophy and personality identification rather than as a serious mental pathology. When just about anyone with a quirky or acerbic personality can be placed in the same simplistic diagnostic category as my catastrophically disabled nonverbal children, we have a scientific, moral, and practical problem.

Because of the shortcomings of the DSM, Escher has evidently taken it upon herself to fix it with a more “realistic” model that for her and the subset of non-autistic parents she speaks for addresses their curious list of “grievous consequences.” This more “realistic” approach took the form of a so-called Autism Matrix that appears to be a visual reworking of the already shallow linear understanding these “autism parents” have peddled about the spectrum model for years.

According to the San Francisco Autism Society’s blog, this is part of a Rethinking Autism series published for Autism Awareness Month. Very few autistic people likely gave Escher any mandate for rethinking anything. But she has an answer for that too: she doesn’t need one! Because her primary concern here is “real” autistic people like her children, “catastrophically” disabled, and few autistic people need be consulted outside of perhaps a handful with, as she describes, “sufficient cognitive and functional capacity.” 

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The Autism Matrix: a visual way to express #notlikemychild. (Note: pictures of actual people blurred out to protect privacy since this wasn’t initially of any concern to Escher.)

Pseudoscience is easy to come by within Escher’s community, but I admit to being particularly astounded by her arrogance in piece after piece she publishes, and especially her “matrix” because it appears as though considerable effort was put into it. It is still difficult for me to grasp the entitlement that Jill Escher evidently believes she has in talking about autistic people this way. But what is she actually saying? At its simplest: we have a typical “not like my child” parent blog post. It is taking everything wrong with “functioning” labels to their logical conclusion by turning them into a pet theory that will be taken seriously by non-autistic people nearly exclusively. It suggests that what autistic people need more than anything else is non-autistic parents​ creating elaborate Intro to Psychology high school projects that a run-of-the-mill “not like my child” blog post could have effortlessly conveyed instead.

The design is based on reports and input from parents, caregivers, and clinicians, as well as people with ASDs who have sufficient cognitive and functional capacity to provide comment.

It must be legit since “people with ASDs” capable of displaying “sufficient cognitive and functional capacity” made some comments. Just curious Jill, what counts in your mind as “sufficient cognitive and functional capacity”? Let’s go to the matrix: one of your “A” class autistics in the top left corner, the ones right on the line between the “Normal Zone” and the “Autism Zone.” In other words: the ones like me, definitely not like your children. Yes, she actually invented a “Normal Zone.” Maybe even worse is the “Confusion Zone” which I won’t even elaborate on. Were I to make this nonsense up it would be for satirical purposes only. Escher could have saved us the trouble with a simple “not like my child” blog post because we’ve seen this all before.

She says that “the tendency to lump ASD under one label has had grievous consequences for progress in epidemiology, interventions, advocacy, policy-making, and service design, among other areas [emphasis added].”

Grievous consequences? Epidemiology? Interventions? Exactly what are these grievous consequences? Don’t get me wrong, I see “grievous consequences” too, not least of all from people like Escher, and not necessarily from flaws in the diagnostic criteria either. No autistic people that I have ever read argue that autistic people with intellectual disabilities be separated from those that do not, because this kind of segregation serves only those like Escher who believe autism to be reducible to external behaviors and IQ scores, that autism is a sliding scale of brain damage, that there is such a thing as a “normal” way of being and a wrong one, and only a handful of these catastrophic “mental pathology” cases deserve whatever service and independent living scraps our society is capable of delivering right now.  Autistic adults see this as epidemic fear mongering attempting to assert its influence on the existing diagnostic model, which is undoubtedly imperfect, but should in no way bow to bigoted “citizen scientists” who see autism as either brain damage or service grabbing quirky fakers. If you are not capable of accepting all of us then you do not belong in a position that allows you to speak on our behalf. 

But those “grievous consequences” Escher talks about are not the same as the ones I see. No matter if our disability is assumed to be “mild” or “catastrophic,” which for Escher and her parents is a scary sounding substitute for “real autism,” all autistic children face “grievous consequences” from anti-vaccine and other environmental causation cultists who usually peddle fraudulent bio-med “cures” and “treatments,” and from parents who “love” their child but “hate her autism,” a love so strong that no forced toxic ingestion is too extreme in the service of winning back the “normal” child you were expecting to have. And then there is widespread conversion therapy (ABA) that “recovers” children from autism small fortunes from families’ bank accounts. And then there is the widespread murder and/or abuse of autistic children by caregivers, and endless “awareness” campaigns and “cure” walks that autistic people never asked for, and a veritable circus of parent “experts” who dismiss autistic adults because our existence throws a wrench into “epidemic” fear mongering. Undoubtedly, I will similarly be dismissed by Jill Escher and the parents she speaks for owing to what she has decided is my “sufficient cognitive and functional capacity” which allows me to maintain a blog. But I’m not kidding myself as I know she is unlikely to read anything I have to say anyway.

Escher is an expert in the pathology paradigm par excellence. She scarcely makes an effort to hide this because she has no need to. Her choice of what only the pathology paradigm could ever decide is a list of “grievous consequences” betrays her motives. But really, her motives are not considered controversial because the pathology paradigm is omnipresent within the dominant cure and treatment culture of the autism community. Escher is another “autism mom” who happened to land in a position of moderate influence in a large US city with an autism organization that lends her unwarranted credibility. And she has an internet connection. Pseudoscience requires WiFi first and foremost.

But she will be taken seriously nevertheless, at least among the subset of parents she speaks for. Because in the alternate reality of the autism community, just about anyone can invent whatever theory or treatment they wish, no matter how absurd or harmful, and still have it taken more seriously than the words of an actually autistic person. I get it Jill, those of us with “sufficient cognitive and functional capacity” are not like your children. But a simple “not like my child” blog post would have won you equal praise from the parents you speak for. Next time, instead of zones and tiers and numbers and letters, just follow the standard “awareness” formula: write some paragraphs about how your child destroyed a pillow or smeared feces on the wall and copy and paste words and phrases like “symptoms,” “high-functioning,” “low-functioning,” “severe,” “deficits,” “treatment,” “inappropriate [choose one: play or behavior],” “suffering,” “disease,” “brain injury,” and you can even include “epidemiology” and “etiology” just to make you sound more science-ish. But all in all, let me be clear in the unlikely event you do actually read this: you do not speak for me and you do not speak for my autistic son either.  

 

Let’s Talk about this Coming “Avalanche” of Autistic Adults

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It is autism “awareness” month, that time of year when autistic people are told that they are costly and burdensome, that they ruin families, and even worse, that they’re growing in numbers (oh, the horror.) A petition has even circulated since Donald Trump took over the White House that claims autism must be declared a public health emergency.

While these ideas remain disturbingly common, some parents are changing their tune, albeit not in ways that actually diverge from “awareness” unfortunately. Nowadays, parents and professionals are increasingly alarmed at the incoming “avalanche” of autistic adults ill-prepared for the lack of services and support they’ll have access to after high school. It is true that autistic adults face a world that scarcely cares to accommodate their support needs, yet at the same time can no longer just “disappear” them into institutions like they used to. We have the disability rights movement to thank for winning important reforms over the last several decades mandating access to the same education available to non-disabled people. Basic civil rights like non-discrimination in public and private institutions and services, in hiring, in residential facilities, etc., had to be demanded before what should be considered routine accommodations were mandated by law. But many autistic adults require access to–and deserve–quality services and support to guarantee their basic needs are met, allowing for full inclusion into their communities. This simply does not exist in most communities. And yet being fully aware of this problem does not justify using the bigoted language of “awareness” to scare everyone into action.

I have a question. It is a question seldom asked by the “autism community” of non-autistic parents and “experts.” Why do we have this scarcity of services and support for adults? I’m not exaggerating. This simple question is never adequately addressed if it is asked at all. When it is asked by some parents and professionals, it is erroneously framed as being based around an assumption, that this state of affairs was always going to exist because the world has yet to catch up with the reality of the “epidemic” at their doorsteps.

On the contrary, this is what I see: there is no incoming “avalanche” of autistic adults. There is simply autistic adults that would have always been born, that would have always existed whether or not services and support were available to them.

This is what I see: an “autism industrial complex” that has emerged in recent decades, its purpose being the development of “treatments” and locating the source of autism to possibly cure it.

This is what I see: in childhood, an overwhelming focus on Early Intervention, extending as far back as two years of age or earlier, with therapies that are justified on the basis of teaching “skills” but which frequently exhibit the curious properties of behavioral modification, compliance-training, and normalization.  

This is what I see: a tunnel-visioned focus on autism as a childhood disorder that erases any notion that these children will grow up into autistic adults, with decidedly adult needs.

This is what I do not see: any ability on the part of the “autism community” to connect the dots, so to speak. While this community of non-autistic parents and professionals stumbles to come up with answers to the oncoming “crisis” of autistic adults, autistic adults are already here and have a lot to say about it. Perhaps we ought to start with the obvious question: why is it that you continually separate the way autistic children are treated and the way autistic adults are treated? These are not separable issues. Autistic children are treated as “fixable” or amenable to “recovery” with intensive Early Intervention as early as age two. The “autism community” says that they should be subjected to hours upon hours of therapy to reduce “problem behaviors” and learn “skills.” This community believes that the only hope for autistic people is through experimental social engineering therapy that seeks an unmistakable goal of autistic erasure. How can the needs of autistic people across their lifespan ever be properly addressed when so much money and energy goes into erasing their neurology before they ever reach adulthood? Meeting the needs of autistic people across the duration of their lives is incompatible with seeing them grudgingly as human beings after they’ve been through years of therapy and behavior modification and–shocker!–came out autistic in the end anyway.

So is there really an “avalanche” of autistic adults coming? Parent of an adult autistic daughter Cindy Godwin believes so, and she doesn’t hold back on the insulting, pathologizing, and fearmongering language that usually accompanies “awareness” either:

“As the number of autistic children grows, so does the number of autistic adults. Their needs remain much the same as they age, yet the support they once received fades. Though families like mine are feeling it most acutely, this is an issue for everyone to consider. The tsunami of adults with autism is coming.”

We’ve now graduated from an avalanche to an even scarier and more devastating “tsunami.” She prefaces her piece by reminding her audience that “autistic children never really grow up.” So what do we do with these children in adult bodies?

She describes the “scene” found at her daughter’s townhome, because boundaries like privacy need not be observed when it comes to your autistic kids. She may be near thirty years old, but no matter, she’s too feeble-minded to have any concept of privacy, like not having her parents describe what her executive functioning disabilities look like at home as though she’s a human zoo exhibit displaying the autistic adult in its natural environment for millions of people to read.

“She’s sitting on the sofa playing video games. Dirty dishes are everywhere in the kitchen, pizza boxes and empty soda bottles cover the countertops, the trash is overflowing and stinks, the patio is littered with cigarette butts, laundry needing to be done is stuffed into black garbage bags. The notice of a certified letter, announcing that she has been dropped from her therapeutic art program for non-attendance, sits on top of a stack of unopened mail and unread handouts from her counselor.

This was the scene I walked in on recently. “She” is my 29-year-old daughter.”

This mom, who states she “suffers combat level stress daily,” along with hundreds of thousands of other parents, evidently equates executive functioning disabilities with immaturity. Remember, “autistic children never really grow up.” As an autistic adult with similar executive functioning disabilities, this is beyond insulting, but standard fare coming from the “awareness” community.

To be fair, not all parents are fixated on the standard impending crisis and tragedy narrative. Father of an autistic son Raquel Regalado published a recent short piece entitled Time for Autism Awareness to Grow Up.

“As the parent of an autistic teen I can attest to the old axiom, “little kids, little problems, big kids, big problems.” And while we appreciate the social and developmental gains our children have made, the older they get the harder it becomes to find services, programing and opportunities for them because funding and public opinion is fixated on early signs and intervention.”

He is absolutely correct when he says “funding and public opinion is fixated on early signs and intervention.” Let me be clear: this must be the starting point for the divided autistic community and autism community to find common ground in discussing the needs of autistic adults.

But there is an alternative to seeing this as an “avalanche,” and there is certainly no justification for using dehumanizing and pathologizing language to describe a problem that no autistic adult had any part in creating. Autistic adults do face a severe lack of services and support. But they also regularly face an “avalanche” of bigotry from non-autistic parents and experts and even the President of the United States, anti-vaccine cure cultists, Early Intervention and ABA social engineering conversion therapists, and a highly influential international organization that makes a lot of money but has little intention of using it to address the most important needs of autistic people and their families. 

But let us say that there is an avalanche of autistic adults. I welcome it. Because autistic adults are adults, not children in adult bodies, and the failure to meet their needs as adults creates a space for them to begin advocating for the services and support they need. And more than advocating, but demanding it. Unlike so many other parents, I don’t see myself as the “voice” of my own autistic son. When he grows up, he grows up into an autistic adult, and no matter his communication challenges (he is non-verbal now, but he’s also three years old), he can learn to advocate for himself along with other autistic adults. Autistic adults are only a “crisis” when autism itself is understood as a crisis. There is only an “avalanche” of autistic adults when autistic children are understood as an “epidemic.” Accepting autistic people as autistic people, and allowing them the same self-determination that every other person has a right to regardless of their support needs, will turn this bogus avalanche into a simple issue of human rights. Never again should any person, based on their different neurology and disability, be described in this way. Accept autistic children as autistic children and there will not be an avalanche, only a need to make certain that autistic children grow up to be autistic adults with their adult needs met and fully accommodated.

On the “Science” and “Evidence” of Early Intervention and ABA

My partner and I have three-year-old twins, one of whom is autistic. I am an undiagnosed autistic adult who went through a lengthy process of self-discovery beginning  before my son was himself diagnosed. He was both our initial introduction to autism as well as the broader autistic community. Like so many adults, I grew up at a time when autism was not understood nor diagnosed like it is today.

Like all new parents, we learned through a process of self-education and experience, not having any previous knowledge of the system in place for diagnosing disabilities and the various services available to assist children and their families. Our son was born with various developmental delays that became most obvious around six months. He was also born with a medical condition called metatarsus adductus that created additional difficulties in his learning to walk. We started on the pediatric therapy circuit with physical and occupational therapists when he was just over a year old. A few months in, one of the therapists asked us about an autism screening. Making a long story short, this was our mostly benign introduction to the Early Intervention system. It would take time for us to fully understand what this system was and how it operates. Some will not necessarily even see it as a “system” per se, as it functions differently in different states and services aren’t always immediately available depending on your geographic locale. I do refer to it as a system because despite how decentralized it may be from one place to the next, it does operate under a broad framework of disability services with therapies that don’t vary in content so much as in availability. Another thing that unites Early Intervention and its therapies is the foundation of ideas about disability in our society from which it evolved over the last several decades. It is this “foundation,” as I’m calling it here, and the ideas that spring from it that are the subject of my argument. At its simplest, I’m arguing here that we at all times situate Early Intervention in its proper context, and this necessarily extends to Applied Behavior Analysis, a “therapy” that targets unique autistic behaviors for erasure.

At the time we were first introduced to Early Intervention services, I remember being fascinated with my son’s obviously different behaviors, at least when compared with his twin brother. His desire to play by himself was described as lacking social curiosity, something we were told every toddler is supposed to develop normally. He would not respond to his name. He would hold his hand out in front of his eyes and stare while moving his fingers around. He was particularly focused on parts of toys, like wheels on a car, and would happily spin them. All of this was a concern for therapists. His behavior was frequently referenced in a way that felt overwhelmingly focused on everything he could not do. And yet if any of the therapists had asked me what my first thought was upon observing him, I’d say he seems a lot like me, not “he should be playing with his brother” or “he should be responding to his name” or “he should be playing with toys appropriately.”

But this experience was new to us. Who am I to question any of these people who obviously know what they’re talking about?  Despite the constant focus on his deficits, I found myself at ease with his behaviors, seemingly unconcerned about what it looked like to other people. I marvelled at his ability to focus on things and his fascination with the world around him, to the exclusion of all else at times. It all felt strangely familiar to me. I felt as though he fit right in with my own socially awkward and introverted behaviors that until then I hadn’t fully understood, years of chronic depression apart.

Eventually I reached a point where I accepted his autism well before his visit to the pediatrician that would diagnose him. At no point did I ever feel like we had embarked on some tragic and regrettable journey of childhood disability. Like all parents, we want our children to do better than us. We want our children to grow up in a better world than the one we live in now. But having a disabled child throws a wrench into that–or so that is what far too many parents are led to believe. Go online to learn about autism and children with other disabilities and tell me it is not easy to walk away feeling like you’ve been burdened with a life you never asked for. Over time, it became clear to me that the Early Intervention system actually quite often feeds on these fears. From the moment your child is immersed in this or that therapy, parents are bombarded with a sense that they must be doing something for their child. It literally feels as though putting therapy off for a matter of weeks or months to understand what it is your child really needs is tantamount to stifling their development as every day lost counts. Much of this is based on the science of brain plasticity, the early flexibility of the brain that ostensibly makes autistic children amenable to “improved” developmental outcomes. I’m leaving aside the validity of the science behind this as I’m not a neurologist. My concern is with the idea that there is necessarily something about an autistic brain that requires this kind of immediate therapeutic intervention to potentially alter its would-be development. This idea hints at the framework, the umbrella, so to speak, that all of Early Intervention services operate under. The first issue that arises is the pathologizing language therapists use which extends well into the public school system with IEP assessments and “special needs” educators. You’ll learn the Early Intervention buzz phrases like “developmental window” and “maximise potential” and “inclusion ready.” Interestingly enough, none of this is based on what autistic children actually need as autistic children. The starting point for Early Intervention is the need for several hours weekly of therapies to assist your autistic child in reaching their full potential despite their diagnosis. So “maximising potential” starts with the premise that your autistic child doesn’t quite meet the expectations set by non-autistic, or normally developing children, and that therapy can help them get as close to that neurologically-typical “bar” as possible. The “developmental window” refers to a short “evidence-based” period of time that your autistic child has to reach said “maximum potential,” or to achieve as much of those neurologically-typical expectations as possible. That autistic children may in fact have alternative “developmental windows,” like, shockingly, autistic ones, is evidently not up for debate in Early Intervention. That autistic people process the world in a completely different way from the neuromajority and that therapy should respect this first and foremost is almost anathema to Early Intervention. It became obvious to me that the problem is not necessarily with each individual therapist, but the training they’ve had pounded into their heads by a way of understanding autism that is at odds with autistic people existing as autistic people.

In and of itself, autism is a naturally occurring neurological difference that presents with a variety of characteristics and abilities and disabilities; it is at its simplest a different way of processing the world. But the disabilities that autistic people confront throughout their lives originate firstly with the world around us, built as it is from the ground up to accommodate the needs of those born with “normally” functioning brains. The latter is actually a very short description of the basis on which the social model of disability arose, an alternative way of seeing and understanding disability. Early Intervention, however, arose out of the antithesis of the social model: the medical model, which to this day sets the parameters of “acceptable” discourse around autism and disability.  

As part of his diagnostic testing we brought our son to a state-run disability services facility for assessment. A year later, as part of his entrance to a “special needs” pre-K program at three years of age, we went through similar assessments. The battery of questions in each assessment all followed a similar theme: this is what a normal child is supposed to be able to do, and we need to know which of these normal behaviors your child cannot do or perform “appropriately” for his age. Children are then put into a seemingly harmless environment filled with toys so that an adult can assess his or her ability to play “appropriately,” to listen “appropriately,” and to behave “appropriately.” Admittedly, it hadn’t occurred to me to sit in a chair at home with a clipboard and observe my son enjoying himself in all the “wrong” and “inappropriate” ways possible. Following these early assessments we were told about Applied Behavior Analysis, an experimental therapy for autistic children that bills itself as one of the best ways to achieve “classroom readiness” if started early and done for 20-40 hours weekly.

ABA operates under the same framework as the Early Intervention system, and some will consider it to be an essential component of it. ABA has been pushed by many disability professionals, therapists, and even our son’s pre-K teacher. Our Early Intervention therapist told us about the ABA options in our area, and we decided to have a so-called “line therapist” come into our home to observe what it is they’d be doing. At the same time, I was researching heavily into exactly what ABA is and what it bases its so-called “science” and “evidence” on. I wanted to be clear on what it is they are selling. I went onto the websites of various ABA facilities and found lengthy descriptions and pictures of children having fun surrounded by smiling therapists. I saw a picture of a young autistic adult who had successfully gone through ABA and graduated college. This is all standard advertising that any product or service will use to draw in customers. That was an immediate red flag for me. I see right through advertising. Nevertheless, we allowed this “line therapist” who had no relevant training otherwise outside of a high school diploma to come into our home and observe our son in his “natural environment.” Two months later, we were on our third therapist as the first one took on another position at the facility and the second one quit three or four sessions in. They came to our home for two-and-a-half hour sessions twice weekly. The very last session I observed the therapist requiring our son to cease a certain “undesirable” stim behavior in order to obtain an M&M. That was the end of it. I had already done so much reading into ABA at that point that I was ready to cancel it immediately regardless.

Adult autistics who went through ABA have produced a lengthy literature on their experiences that anyone can go online and read, and I highly recommend you do so. Parents of autistic children and some ABA professionals have also spoken out. ABA bills itself on the “science” and “evidence” spearheaded by Ivar Lovaas and his experimentation on autistic children going back several decades. They use the principles of behavior research of B.F. Skinner as well as a host of other researchers who completed various later studies. ABA practitioners frequently dismiss the experiences of autistic adults as being representative of a failure of proper ABA implementation. ABA facilities argue in defense that they have moved beyond the less savory practices of their forebears. You’ll see variations on the following theme in countless blogs written by autistic adults or parents who stopped ABA for their child: a Board Certified Behavior Analyst or other ABA “professional” telling autistic people or parents to “do their research,” that ABA does not harm autistic children, at least not anymore. Parents will chime in with “I’m sorry you had such a bad experience with ABA, but we have been very successful and my daughter loves it…” It is hard for parents who don’t know any better to discern who is right and who is wrong here. The purpose of this is not even to answer that question but rather to take a step back and examine the context that is so frequently left out of discussions around Early Intervention, ABA, and its claims of being “scientific.”

It was child psychologist Leo Kanner who allegedly “discovered” autism in the 1940s, giving it a name, his research claiming rather consequently that autism was a rare childhood disorder (I say “discovered” in the same sense that Columbus “discovered” the Americas: in both cases people already existed and had for millennia before the “discoverer” showed up.) Several decades later, British psychiatrist Lorna Wing, mother of a so-called “low-functioning” autistic daughter showed conclusively that it was Austrian pediatrician Hans Asperger who found autistic traits and characteristics to more accurately exist on a “spectrum.” Wing founded the term Asperger’s Syndrome which dramatically changed the way psychologists and researchers understood and diagnosed autism, though change didn’t exactly come overnight. Despite this big leap forward, the decades-long damage from Kanner was done: autism was understood as a rare disorder primarily affecting children. This is the framework that nurtured the ideas that we see pervading Early Intervention services, ABA, and the general discourse on autism. Autistic people were not included in discussions around autism decades ago, and they are still today often dismissed as being capable experts on their own lives. Organizations like Autism Speaks have never needed actually autistic people in positions of influence as they operate within a strictly medical framework that sees autism as a disease in need of “treatment” and even a cure. Early Intervention and ABA similarly don’t consider the perspectives of autistic people because they operate under the same framework.

As for the “science” and “evidence” of Early Intervention and ABA, I have a few thoughts to share. If the reader takes away anything at all from my argument here, let it be this: “science” and “evidence” do not stand above and apart from society and history, but are necessarily shaped and influenced by the ideas that pervade it, and we live in societies of immense inequality.

Early Intervention services, ABA, and “special education” all operate in a framework that sees disabled people as broken precisely because they arose from a foundation–our present social and economic system–that values the able-bodied above all else.

That is the context that all science and all evidence have to be situated in. To be sure, science and evidence are vital. To give just one example, it is because of science that we know that the MMR vaccine does not cause autism. Other ideas in the not-so-distant past have also claimed the mantle of science, like Phrenology, whereby the explicitly racial slavery of Africans in the “New World” was justified based on invented “differences” found in their skulls and brain structure. Eugenics was also considered science, with the “evidence” justifying forced sterilization programs and later influencing Hitler’s genocidal Holocaust. “Science” and “evidence” are still today used to justify claims of racial inferiority: see The Bell Curve by Richard Herrnstein and Charles Murray. Climate change deniers also use the prestige of “science” and “evidence” to justify their claims, though of course most of them have interests in the archaic but overwhelmingly profitable fossil fuel industry.

I’m not claiming that ABA is anything like Phrenology or a Eugenics program. The point I’m making is that “science” and “evidence” cannot be separated from the material world in which we live. By the turn of the 20th century, the US Army had successfully prosecuted its war of extermination against the indigenous peoples of the Great Plains. Schools were set up for “assimilation” of Indians into “proper” American citizens. They were forced to learn English, dress like Europeans, eat European food, worship a Christian god, and pursue mainstream American careers and interests. It was believed that the “tribe” could be rooted out of the “indian.” Of course today we ask what is even remotely ethical about this? The problem is not that this is unethical, but that the definition of what is or is not ethical changes over time. Predominating ideas at any point in human history have influenced not just what “evidence” science finds, but what science decides is worth studying in the first place. For example, are LGBT people “born that way,” suggesting a genetic component to their sexuality, or does our society have pre-existing notions about which form of sexuality is right and which is wrong, leading some scientists to search for a non-existent “gay gene?” In this way, dominant ideas about autism and disability at the time necessarily shaped what “science” was seeking and the “evidence” that would spring from it. With autism, still today, standards remain low as any quack alchemist can invent a magic potion that allegedly cures autism or its worst “symptoms,” from chelation to bleach enemas and even special gluten and casein-free diets for “leaky gut syndrome.” The medical model of disability rests on a bedrock of erroneous and harmful ideas about autism that has allowed a “cure” outlook to flourish, whether it comes in the form of modern “alternative medicine” quackery, the “puzzle piece” imagery of mainstream autism organizations who put money into finding the origin of autism, or in the Early Intervention system that sees its role as fixing “broken” people.

ABA sees autism as a constellation of undesirable behaviors that not only can, but evidently should be rooted out based on the ideas of normalization that pervade the Early Intervention system generally. It uses various strategies and tactics to achieve a goal that is unmistakably one of autistic erasure to whatever extent possible. It continues to justify this on the grounds that it is “scientific” and “evidence-based.” But the “science” and “evidence” comes directly out of a period where autism was understood as a childhood mental disorder, with autistics as burdens, as objects to be experimented on, as shells hiding a “normal” person beneath, or as “damaged” versions of a “normal” child. This is the “puzzle piece” era. It makes complete sense that given the ideas about autism that pervade our society, autism “awareness,” being merely the public-relations front for the medical model, would be the first thing that parents are exposed to.

“Old” or “new,” ABA still operates firmly within the framework of the medical modelthat sees autistic people as suffering and as financial burdens to their families and society at large. Old or new, ABA therapists are never required to understand how autistic children process the world around them. The root of the behavior is not nearly as important as how the behavior affects other people first. The idea that ABA is necessary to deal only with those behaviors that impact the health and well-being of the child and caregiver, like the classic head-banging example or aggressive behavior towards a parent, is belied by the fact that autistic people across the entire spectrum have been through ABA regardless of the presence or lack of aggressive behaviors towards themselves, caregivers, or parents. There is not one aspect of autistic behavior that requires ABA intervention. This simple fact alone should suffice to expose the real agenda behind ABA: that there are other means of working with autistic children that actually respect their unique way of processing the world around them, and that ABA is concerned much more, if not solely with suppressing the needs of autistic children towards a goal indistinguishability.

Furthermore, ABA has harmed autistic people all across the spectrum, not just those with the highest support needs. ABA cannot accept autistic people as they are, because accepting autistic people means embracing the biological fact of neurodiversity. Human evolution has produced a wide variety of brains, autistic brains being one variant which further exhibits an array of different traits, characteristics, personalities, and abilities. Autistic people have existed throughout human history. Accepting neurodiversity as equal and valuable and accepting autistic people as autistic is at odds with the entire approach of ABA, and the language and behavior towards autistic ways of being by those who operate under the Early Intervention system reflects this.

They have even invented a metaphorical “yardstick” that is used to measure the degree to which autistic people resemble non-autistic people: low-functioning and high-functioning. Nevermind that these “functioning labels” are not actually real diagnoses nor are they considered helpful or even close to an accurate portrayal of the problems faced by autistic people. But remember, these ideas and the language that flows from them are considered normal, mainstream, non-controversial, because a medical model has set the boundaries of acceptable discourse on autism for decades.

If we want better for future generations of autistic people, we obviously must reject the “science” and “evidence” that says success for autistic children means faking your way through life with a pseudo-neurotypical smokescreen. The definition of “success” has to be changed to success because of her autism, not despite it. Non-autistic people cannot “rise above” their neurology, and they are never expected to. Nobody can do this. Why, then, are autistic people expected to? Why must parents love their child but “hate her autism?” Why do we constantly hear parents say that they must see their child first, not his autism? Why are autistic children expected to be able to separate themselves from the brain they were born with? These ideas go unquestioned by other parents and by therapists and special education teachers because autism is understood through a lens of pathology and the logical conclusion that flows from it: “awareness,” cure, and normalization therapies.

You cannot accept both the science of neurodiversity and the science of autism as pathology. This is not just about going after the “bad apples” of the Early Intervention system and ABA, though abusive therapists certainly need to be punished. It is the framework in which therapists are trained that is the problem. “Success” in achieving “inclusion readiness” with 40 hours a week of behavior modification beginning at age two or three is not an indication of the success of ABA or any other normalization therapy. Rather, it is an indication of just how far we have yet to go toward achieving acceptance of autistic people as autistic people. Going after the lowest hanging fruit of Early Intervention and ABA is often the only way to really reach new parents who simply aren’t certain what they should do for their child. But “bad apples” are merely a symptom: the whole tree is rotten down to the roots. New soil is required. A new foundation that embraces neurodiversity and the value of autistic people no matter their “functioning” level or support needs. From new soil the seeds of an entirely different tree can grow. We also have science and evidence on our side and I hope for future generations that we can carry it forward by always making acceptance the starting point of “acceptable” discussion around autism.

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