To raising Autism awareness and Acceptance, and battling negative stereotypes about Autism.
To advocate for the inclusion of Autistic people in the community.
To offer a forum to broadcast our stories and thoughts, and to help the messages of Autistic people and non-Austistic allies reach as many people as possible.
Edition to clarify, 1 November 2015: My family and teachers did know I was autistic; I was diagnosed at a very young age, in the late 1980s or early 1990s. Their actions toward me were an example of wilful ignorance and shame-based thinking, but it would be unfair to say that they didn’t know I was autistic.
My childhood predates the widespread phenomenon of the “autism parent” who infantilises their child well into the adult years, writes long jeremiads about how burdensome their child is and how much better off they would be if their child were dead, constantly presumes their adolescent or adult child’s incompetence, and avoids facing the reality that their child is an independent and autonomous person. Nevertheless, despite the different social landscape surrounding autism that existed in the late 80s and early 90s, I had much of the same destructive rhetoric and behaviour directed toward me throughout my childhood, adolescence, and early adulthood, primarily concerning the pervasive presumption of incompetence and ignoring the root cause of particular behaviour patterns.
My parents and teachers tended to apply a black-box approach to my behaviour, focusing on correcting me rather than trying to find out the reason why I was having meltdowns. All they paid attention to was the superficial behaviour, not what I was trying to communicate underneath the behaviour.
For example, if I was trying to explain a particular social faux pas or give context to something I had done that had baffled an adult and they wouldn’t listen to my explanations, I would start melting down out of frustration and would start yelling, crying, or both. They would continue to repeat themselves over and over again and not take me seriously, which only increased my frustration and made it difficult for all of us to come to an agreement. In childhood and adolescence, I didn’t have the emotional vocabulary to explain why certain things upset me, and that frustration led to meltdowns. As an adult, I generally do, which is why I tend to express anger, frustration, sadness, or boredom in more measured tones, rather than having shouty meltdowns.
However, most of the adults in my life didn’t see that attempt to communicate; they considered the meltdowns “temper tantrums.” If they had only listened to what I was calmly trying to tell them in the first place before the meltdown had occurred, and had tried to look for the underlying reasons behind a particular behaviour pattern, I would never have melted down. I rarely have meltdowns directed at other people anymore, mostly because the people I keep around me do not make a habit of presuming I am incompetent.
Behaviour is communication, and you may be missing something important by focusing on its superficial manifestation. Skinner was wrong; you can’t treat human beings like black boxes.
The correction I experienced took the form of ridicule, shame, and punishment. One particularly galling example involved my mother pulling out her brand-new video camera and filming me having a meltdown when I was 12, in order to embarrass me into not having them again. It didn’t stop them, of course; all it did was leave me with a traumatising memory that is still pretty clear seventeen years later.
After my family decided to convert to a conservative, evangelical form of Christianity, they started adding a dash of religiously fueled vitriol, blaming the meltdowns on Satan along with the autism. I remember being in my teens and having hands laid on me to pray out the demons to stop me from having meltdowns or negative emotions. Sorry, exorcism isn’t a way of dealing with meltdowns.
There are countless other stories that I could share, but this isn’t really as much about individual anecdotes of shame-based behaviour training as much as it is a general overview of the Autism Parent mentality and how it can lead to destructive and long-lasting effects on the now adult children who have been exposed to them, and how the presumption of incompetence on the part of one’s developmentally disabled offspring is an example of the continuance of an ableist worldview.
As is often the case, the toxic Autism Parent mentality intersected with other forms of bigotry that they routinely expressed toward people they designated as “The Other.” When they found out that I was queer and could no longer deny it, for instance, they expressed their interpretation of this news as my “not being ready” for heteronormative relationships. They would bring religion into it, too, claiming that Satan was somehow involved. In all these cases, I was stripped of my agency, either because of their poor interpretation of what autism entails, or because of Satan.
Of course, there may be a devil’s advocate who will come along and say, “Oh, but these methods must have worked on you; you live independently, have a job, and have a degree from a good university!” No, I didn’t make it to where I am because of these methods; I made it to where I am despite these methods. I’ve had years of trauma that I’ve had to work through. I still have difficulty asking people for help in part because I worry they’ll see me as incompetent because of it.
So why am I talking about these traumatic experiences in public? Because I want you—autistic people and allies alike—to understand that the shame-based, parent-centric, gloom-and-doom model of autism does not work. Your efforts should not go toward creating people who are superficially indistinguishable from their peers; they should go toward securing accommodations, advocating for our civil rights, and above all, treating us as actual human beings. It’s really not that difficult.