Recently, 4chan-flavored trolls invaded the #autchat hashtag. For the uninitiated, Autchat is a bi-weekly discussion group for Autistic people. Past topics have included friendship, autistic representation in media and strategies for coping with executive dysfunction. The community is usually warm, welcoming and a great place to learn. Instead, participants were told to commit suicide or drink bleach to ‘cure’ autism. The source of their ire? An Autchat regular and middle-aged mother of two described herself as ‘informally diagnosed.’
Autism self-diagnosis is a topic that can evoke strong feelings in many people. It isn’t unusual for adults to self-diagnose. It also isn’t unusual to get a lot of push back or even violent threats for self-diagnosis. Why does self-diagnosis make people so angry? More importantly, why do people self-diagnose in the first place? The hostility directed at self-diagnosis is, fundamentally, based in ignorance of what factors lead to its existence: Healthcare inaccessibility, rapidly changing diagnostic tools and the changing face of what autistic people and autism even look like.
A frequent accusation leveled against people who self-diagnose is that they are displaying the symptoms of ‘Special Snowflake Syndrome.’ Special Snowflake Syndrome is a term used derisively to describe a desire to be special and different. The problem is, who doesn’t want to be special or different? The term stigmatizes harmless forms of creative self-expression. Believing that you have the soul of a Lisa Frank leopard or identifying one’s gender as ‘galactic’ doesn’t hurt anyone. I wish, when I was younger, I’d had the creativity and flexibility that people now have to express themselves. All that being said, self-diagnosis comes from a different place. While self-diagnosis shares the search for a vocabulary of self-expression, there are more sociological aspects that go into why it is so widespread to begin with. These aspects are not related to Tumblr or other popular social media platforms.
The root of self-diagnosis is a lack of good resources. A lot of people, particularly women and people of color, didn’t get diagnosed as children because autism was seen as a white, male disease. When I compare stories about my early childhood with male autistic peers, I am astounded at the similarities. For example, I was suspended from preschool for throwing a tiny, plastic chair at one of my teachers. In middle school, a boy asked me to be his date for the dance and I automatically assumed that he was telling some kind of joke that I didn’t understand. I didn’t realize until years later that I had badly misread him and his intentions. I spent hours, well into high school, carefully arranging my dolls into pleasing and sensical configurations. All of this probably sounds familiar to parents with autistic children. If I had been male, these social and behavioral problems may have been evaluated differently.
More seriously, autism was once seen as something apocalyptic for families. In one particularly notorious ‘awareness’ campaign from Autism Speaks, a board member describes her desire to commit murder-suicide with her autistic child, with her autistic child sitting only a few feet away and well within earshot. Some parents avoided formal diagnosis of their children because they wanted, desperately, for their children to be normal. Many people who were diagnosed later in life have developed their own ways of coping with a world that was not designed for autistics. Life may have been easier for them if they’d had access to certain supports.
As someone who was diagnosed as an adult, I feel the paradox of late diagnosis acutely. On one hand, I wonder if I would have struggled less in school if I’d had access to an individualized education plan, or even the awareness of why life was different for me than it was for my sister or my peers. I stumbled through most of my childhood angry, confused and often alone without knowing what I was doing differently. On the other hand, I feel extremely fortunate and grateful that I have not suffered through the applied behavior analysis and other abuses masquerading as treatment that has deeply scarred many of my autistic peers who were diagnosed as children.
Things are changing. In the last two decades or so, rates of formal autism diagnosis have steeply increased. An estimated 1 in 68 children are autistic, compared to the 1 in 2500 estimate from 1990. There aren’t, as some conspiracy theorists believe, more autistic people now than there were then. It’s just that our diagnostic tools have improved significantly. Furthermore, reduced stigma means that parents are not only willing but motivated to make sure their children get everything they need to succeed. ABA and other abusive therapies are still given unfortunate legitimacy by the American government and individual parents, but that is also changing.
We know why formal diagnosis rates have increased. Given this, what is an informal or self-diagnosis, and why does it still happen? One common form of informal diagnosis is when parents have multiple autistic children. New knowledge about autism and genetics may lead these parents to look into their own histories. Steve Silberman documented this phenomenon as early as 2001 in his article, ‘The Geek Syndrome.’ Some of these parents go on to seek formal diagnosis, out of curiosity or because they feel that accommodation of some kind would improve their quality of life. In general, people can lead fuller, more productive lives once they know how to address problems they didn’t previously understand. An autism diagnosis, or even the consideration of an autism diagnosis can provide important insight.
Given the obvious benefits, why aren’t adults diagnosed more often? Is that that they know they’d be labeled ‘neurotypical,’ thus popping their possibility of being special? No, of course not. Even if adults have histories and impairments that point to autism, autism is still largely viewed as a children’s disease. As a result, very few professionals can provide adult autism diagnoses. A diagnosis can include up to three days of cognitive testing if you can even find someone who is qualified to perform the tests in the first place.
The difficulty of finding professionals who deal with adult autism isn’t the main limiting factor in diagnosis though. That dubious honor falls to the sheer cost of an official diagnosis. Of the few autism specialists who are qualified to diagnose adults, only a tiny number take insurance. In the DC area, the cost of an official autism diagnosis from a specialist is approximately $4000. If you’re an adult who may be autistic and who has managed to muddle by without disability accommodations and you’re not in school, the high cost of a diagnosis just isn’t worth it. This is the main reason why groups by and for autistic people are often inclusive of people who are self-diagnosed. Most people simply do not have a few extra thousand dollars lying around to get an official label slapped on to something that they may already know about themselves.
Even without an official diagnosis, many people find engagement with the Autism community helpful. You don’t need an official diagnosis to benefit from learning coping techniques with people who have similar life experiences. Worst case scenario, someone who isn’t autistic learns how to function more easily from people who are autistic. All this does is make some people’s lives easier. There’s nothing sinister about it. It’s just another instance of the curb cut effect: Disability accommodations can improve the lives of more than just their target audience.
Of course, this leads to a common autism parents’ bugaboo: The belief that the people who advocate for the autistic community are not actually autistic, or that those people are too ‘high-functioning’ to understand the issues that affect these parents’ children. The thing is, many of these so-called ‘high-functioning’ people may not have always navigated the world as easily as they do now. I was a screaming terror as a child. The preschool I attended was Jewish parochial and affiliated with the Chabad movement. My preschool teacher was deeply religious and well regarded in the ultra-Orthodox community. When my mostly secular mother told my preschool teacher that she was planning on having another child, my preschool teacher told my mother, only half-joking, that my mother must have great faith in God. Headbanging, aggression and other behaviors that are generally considered negative are not uncommon childhood experiences for many ‘high-functioning’ autistic adults, whether they have an official diagnosis or not.
I appreciate that many autistic community groups like Autchat understand these issues and affirm the identities of people who are self-diagnosed. I hope that in the next few years, the difficulties and deficiencies in care that lead to self-diagnosis will be better understood in the mainstream. As diagnostic tools and understanding improve, I expect that the number of self-diagnosed autistics will decease accordingly, as self-diagnosis will no longer be as needed. I don’t expect the number of Internet trolls to fall any time soon, but a girl can dream.