From Self-Diagnosis to Self-Realization
In spaces for Autistic adults, the topic of self-diagnosis can sometimes create a bit of controversy. People tend to fall under one of two camps: either you believe that a person must have a formal assessment and diagnosis of Autism in order to say they’re Autistic, or you support a person’s right to self-diagnose.
That first position looks very respectable to allistic (non-Autistic) society. When Autistic people submit to the diagnostic rules and categories that were created by allistic people, we are being well-behaved, predictable, and obedient. We are letting outsiders define us. When we do this, we’re admitting that neurotypical people know us better than we know ourselves. Sometimes formally diagnosed Autistic people will even lash out and question the legitimacy of self-diagnosed Autistics, helping to maintain and enforce a status quo that allistic people created for us.
Then there’s the latter camp, the one that accepts self-diagnosed Autistic people. This camp is growing in size every day, just as the number of self-diagnosed Autistic people continues to expand. However, many people who support self-diagnosis do so in a tentative, apologetic way. They’ll talk about how difficult it is for some people to get access to an official assessment. They’ll concede that if you don’t have medical insurance, you can self-diagnose, but that you really should seek out an assessment if you ever get the chance. The root assumption of many people — even the ones who support self-diagnosis — is that formal diagnosis is superior.
And many self-diagnosed Autistic people are very apologetic about their status. They’ll say that they “think” they “might be” Autistic. They’ll ask if they have a right to be in the support group, or to occupy the meeting space. And they’ll explain, nervously, that they’ve read every diagnostic test they could get their hands on, and they asked all their loved ones to fill them out, too, and each one of them came up positive, so they’re pretty sure that if they could get diagnosed, they would be, but they can’t yet. Many of them aspire to one day get assessed, so that they can finally validate what years of self-knowledge has told them.
I do not fall in that latter camp. Don’t get me wrong: I support self-diagnosed Autistic people wholeheartedly. I believe people when they tell me that they are Autistic. But unlike so many other Autistic folks who support self-diagnosis, my support does not come tentatively, or with the assumption that a formal assessment is preferable or more believable than a personal one. In fact, I think the opposite.
I’m not just in favor of self-diagnosing Autism. I’m actively opposed to formal diagnosis.
Does that sound outlandish to you? Let’s break down what we know about Autism and how it is assessed.
Most Autism assessments were created by non-Autistic people, and they were made to identify the Autism in children. For many decades, researchers believed that Autism was caused by an “extremely male brain”, and so they assumed that only young boys could be Autistic. Furthermore, most of the Autistic boys who were originally studied were white boys, often from middle-class or wealthy families. And those white, young boys from wealthy families were only brought to doctors and researchers because their Autism presented an obvious problem to other people; they were self-destructive, or loud, or they couldn’t perform well in school.
These children are a subset of a subset of a subset of a subset of the actual Autistic population. And yet they made up the entire foundation on which all research and all diagnostic tools for Autistic people are based. From the 1940’s until about the mid-1990’s, nearly all Autism specialists based their treatment and diagnosis on an understanding of Autism that excluded adults, women, people of color, transgender people, poor people, and people who had learned to hide their Autistic traits. To this day, many assessors are ill-equipped to deal with any of these populations.
People are still regularly dismissed from being assessed because they do not meet the stereotypes of what an Autistic person “looks like”. Some clinicians still refuse to diagnose Autism in women and girls, or they’ll disregard a person’s suspected Autism because they seem too “polite” or “normal”. Clinicians are not consistent with one another in how they assess Autism, which tools they use and how they go about using them. And no matter how talented or sensitive the clinician is, they are still performing adult assessments using instruments that were developed for children. The CDC website still completely ignores the topic of diagnosing Autism in adults.
When I was a child, I had many of the most stereotypical markers of Autism, from poor motor coordination, to social and sensory issues, to using a large vocabulary at an atypically young age. I was the picture of what back then would have been called Asperger's. I was given a ton of assessments for other issues, such as my motor problems, but not for Autism itself. The most likely reason for this is that society saw me as a “girl”, and everyone knew back then that girls don’t get Autism.
I know countless Autistic adults (formally diagnosed and self-diagnosed) who similarly slipped through the cracks. The tests that are used to categorize us are as far from objective and rational as they could possibly be. Even when a test is administered well, it basically comes down to asking a person to honestly reflect on whether or not they have any Autistic traits.
An adult human is absolutely capable of doing that on their own. Often, we know ourselves vastly better than clinicians do. We have a larger pool of data on ourselves than they will ever have.
I also oppose formal diagnosis because Autism is not a simple category that you either belong to or don’t belong to. No one can actually determine whether a person “has Autism” in a binary sense, the way we can screen for a tumor or strep throat. Autism exists in a series of spectrums, and they all vary a great deal from person to person.
One Autistic person might be extremely sensitive to sound, so much so that being on a crowded bus makes them want to vomit. Another Autistic person might not be bothered by sound much, but might find wearing tight clothing to be absolute torture. Some Autistic people do a lot of obvious self-stimulatory behavior — they rock in place, click their tongues, or flap their hands all day long. Some keep it very subtle. Some Autistic people can’t make eye contact; others can. We’re all unique beautiful angels; in fact, our brains are organized in more diverse and unique ways than neurotypical people’s brains are.
What this means is that a person could be right near the edge of the diagnostic cut-off, on every single Autistic trait, but still not count as Autistic in a professional’s eyes. Clearly this would be someone who has tons of experiences in common with Autistic people. They might struggle with bright lights or strange food textures. They might take jokes very literally, or not be able to detect sarcasm. They might have melt-downs the way many of us do. And they probably would benefit from the same kinds of resources that officially “Autistic” people benefit from.
But because of where the line was drawn in the sand by professionals, those people are not really Autistic. To me, that’s not only irrational and lacking in scientific precision — it’s fundamentally unjust.
I believe our community has a lot to gain by letting sub-clinical Autism-spectrum people under the Autistic umbrella with us. We share common interests and experiences. We deal with similar difficulties as we move through the world. There is strength in numbers, and the more people we have advocating for sensory-friendly spaces and lax social rules, the more Autistic people will stand to benefit. Why gatekeep who is deserving of community and help?
Everything useful that I’ve learned about Autism, I have learned from Autistic people. Fellow Autistics taught me how to limit my sensory input and ground myself when I’m feeling stressed. They gave me permission to reduce my social contact, and to stop presenting myself as the bubbly, outgoing feminine person society had pressured me to be. Autistic people introduced me to weighted blankets and fidget jewelry and sensory slime; they helped me discover when I was at risk of experiencing melt-downs. Most importantly, they helped to normalize every difficult and alienated feeling I have ever had.
You know what Autism experts have done for me? Nothing. Clinicians generally see Autism as a disorder to be treated, or a malady to be “cured”. Yet they offer no treatments for adults that make Autistic traits any less severe or intense. That’s because there are no such treatments.
Autism cannot be cured or removed from a person who has it. It is a fundamental component of who we are. Autism is a type of functioning and a way of being. Just as a Deaf person often cannot be “cured” of their Deafness, but must instead be accommodated by hearing society, Autistic people cannot be “cured”. We need and deserve societal acceptance instead.
This is at the heart, really, of why I oppose a medicalized framework to Autism and defining who is Autistic. Autistic people are not broken or sick. Autism is not something to be measured, quantified, prescribed a treatment for, and cured. Many of us would never want to be cured even if a cure existed — because Autism is a fundamental part of who we are. And there are many benefits and joys that come with being Autistic.
Unfortunately, the clinical and legal power structures do not see Autism this way. And in many cases, getting diagnosed with Autism can bring a great deal of difficulty and ostracism to a person’s life. For years, Canada would not let a person immigrate to the country if they were Autistic. Autistic transgender people, like me, are often denied access to necessary medical care and gender-affirming treatment. We aren’t trusted to define our own genders, because Autism is seen as causing impaired judgement. And generally, if a medical provider sees an Autism diagnosis in your records, they will treat you with condescension and disrespect at best. At worst, you may lose your legal autonomy.
As you can see, there is very little to gain from getting a formal, medicalized Autism diagnosis, and a significant amount to lose. So where do we go from here? If Autism is not a diagnostic category, what is it?
I would like to propose a framework of Autism that is completely non-medicalized. Therapists, doctors, neuroscientists had 75 years to come to a firm and useful understanding of Autism, and they blew it. They called us less than human. They conspired with Nazis to have us eradicated. They erased those of us who weren’t white cis boys who loved trains. They tried to cure us and created more stigma for us. They advocated to have our kind completely erased from existence. They ignored us when we asked for help managing the social and sensory traumas of existing in an allistic world.
They don’t get to define who we are and what we need anymore. They botched it irreparably. Now it is time that Autistic people take our fates into our own hands.
I am pro self-realization of Autism. I am pro self-identification as Autistic. I believe that if you speak to Autistic people, learn about what our lives are like, come to understand our challenges, and find that you identify with us, then that is enough.
I don’t care if you would be categorized as Autistic by some outmoded diagnostic tool created for children and later adapted, poorly, to flag a handful of the most stereotypical Autistic adults. I don’t care if you spent thousands of dollars trying to get a doctor to validate what years of self-knowledge has taught you. I truly don’t care what the doctors think. I want to hear what you think.
And I don’t think you need to be cured. You don’t need to lessen your obvious signs of Autism, to be accommodating and palatable to a society that has been unfair to you all your life. I believe you deserve community and acceptance. I believe it is the world that must learn how to accommodate you.
Under this framework, it is neurotypical society that must change and seek treatment, not Autistic people. The only way for Autistic people to thrive is for us to oppose any system of power that says we are something to be measured, monitored, contained, and controlled. And in order for society to function, neurotypicals must learn to get used to us, because we are growing in numbers, and not going away.
There are far, far more of us than any researcher or diagnostician has been able to accurately estimate, because their tools are so shoddy. They cannot erase us from existence, because we are not a disease to be purged. And I hope that lack of understanding and control makes neurotypical Autism “experts” absolutely quake with anxiety. We can’t be contained if we don’t let them contain us. The time for submitting to their systems has ended.
I believe in Autistic autonomy. I believe in our agency and self-knowledge. I don’t believe in diagnosis.