I have had my autism diagnosis for a decade now and yet I often still hesitate to publicly identify myself with the label. For quite a while my Twitter profile only listed me as having cerebral palsy. I never thought twice about sharing that I had cp but I had misgivings about coming out as autistic. Ultimately I was more annoyed with my reticence to identify as having an Autism Spectrum Disorder, than I was about how being openly autistic might affect the way others perceive me. I however think that talking about why I felt that discomfort in the first place is important.
Disability, regardless of form or type comes with significant stigma in out society. That stigma leads to prejudice and discrimination, so it isn’t difficult to understand why some people who can hide their disabilities choose to do so. In the end it is a personal decision for which no one should be judged. But I already have a visible physical disability and cannot pass for nondisabled even if I wanted to, I’m already permanently labeled as disabled. So why do I feel compelled to hide my autism?
The answer to that lies in a phenomenon known as the hierarchy of disability. It is a social construct that makes certain kinds of disabilities more acceptable than others. It is an arbitrary system through which disabled people are judged and categorized and it’s something that many of us were taught (though often unintentionally) to internalize.
The basic idea behind the hierarchy is the prejudicial idea that disability is equated with being a burden or public nuisance (by this I mean that people are immediately forced to deal with the fact that the disabled person exists and might interact with them unexpectedly). So to maintain higher status a disabled person must not be perceived as either of those things.
Basically the less a disabled person makes the nondisabled majority think of other disabled people, the better. It’s why many nondisabled people are convinced that saying things like “You really don’t seem disabled” or “I don’t think of you as disabled” are compliments. What they are really saying is “I don’t associate you with all the negative things I think being disabled is”. It is also the root of the faux compliment widely hated by disabled people “you’re such an inspiration”.
It is all tied into associating disability with negativity but within the framework of the hierarchy, some people make out worse than others. People with intellectual disabilities or who are perceived to have intellectual disabilities are inevitably found near, the bottom.
None of that erases the prejudice and discrimination experienced by disabled people who are perceived to be higher up in the hierarchy but it does come with privileges. Such people are at least socially often treated better and aren’t met with as much discomfort and fear.
In the end the hierarchy is flimsy though and requires the investment of time and effort of disabled people to maintain their status as less of a burden or nuisance because inevitably they enter new environments and meet new people who don’t automatically know where on the hierarchy, they stand. So depending on context a person’s position can go up or down at the whim of the nondisabled people around them.
And Disabled people do buy into this idea that they should avoid and shun other people with disabilities or deny themselves accommodations to be perceived as less of a burden. Buying in can seem like the only way to avoid a lot of self loathing. Plus believing yourself to be some kind of exception allows you to feel superior, like you achieved something.
Buying into the hierarchy also keeps disabled people separate from one another and keeps us divided. This is particularly problematic in terms of advocacy because either some people distance themselves from the disability rights movement altogether or have tunnel vision and ignore the needs of disabled people whose lives are different from your own.
Finding disabled people who buy into this idea isn’t hard. I’m not going to link to anyone because this post isn’t about judgement or blame. We are raised in this social construct and it is entirely understandable why people believe it.
I am guilty of it myself. It wasn’t until I started engaging with Disability Studies that I was even fully aware of how brainwashed, I had become and was able to begin dismantling those toxic ideas. My indoctrination was not systematic and the people who contributed to it had no idea they were doing it.
I grew up almost entirely cut off from other disabled children. The only contact, I had with them was tangential, when I went for physio or to the local rehab hospital for appointments or the odd event. I was aware of other disabled children but they were always separate often intentionally segregated in special classrooms that existed in hospitals or schools that I didn’t attend. It’s not hard to see how as a child who was almost universally mainstreamed that I came to the conclusion that I wasn’t like them. I would never have said that I was better than they were but the general discomfort I felt when I was around them shows that on some level I believed that I was.
On the rare occasions that I was enrolled in segregated activities with other disabled children, I chose not to engage and felt that the activities were too mundane (this is likely due to the fact that the organizers had no idea how to plan interesting activities for children with diverse disabilities). This only made me more convinced that I didn’t want to be grouped in with other disabled people. I began telling my mother, not to enroll me in such programs. It never occurred to me that the problem wasn’t the other participants but rather very poor planning and understanding on behalf of the facilitators.
As a child I had no formal accommodations in school, and on the rare occasions that I requested them, I was denied. The message that I shouldn’t have them was pretty clear (I had no idea until I was an adult that my rights had been violated).
Add to that, I was already feeling the widespread prejudice of being disabled. People would treat me like a toddler and use baby voices. I often felt compelled to say to people “I have a physical disability but there is nothing mentally wrong with me” (I cringe thinking about this now). It didn’t occur to me that their treatment of me was unacceptable period. Regardless of type of disability.
So when at eighteen, I was diagnosed on the autism spectrum it really threw me. On the one hand that diagnosis changed my life for the better in so many ways. I now understood my childhood so much more clearly. Understanding why I reacted to the world the way I do, helped me to put coping mechanisms in place.
It also opened the door for a lot of accommodations that I had been denied during my grade school years. Yet as I entered university, I hesitated in taking advantage of them. In fact, when one professor saw that I was struggling and recommended I seek accommodation, I was offended.
When I did finally seek accommodation I began to flourish academically which is what has ultimately allowed me to reach the academic level of PhD Candidate. Yet despite all the benefits not only the label and accommodations have afforded me, I still hesitate to publicly label myself because I know that the additional stigma of a DSM diagnosis confirms so much of the deeply held misinformation the nondisabled public has on disability.
Passing for neurotypical is both easy and hard. If I don’t identify, people don’t notice. At worse I come off as rude and standoffish. Yet the constant vigilance to police my own behaviour and function in society is exhausting.
Also I happen to really like myself and I am aware that autism plays a big part in making me who I am. If you removed my autism, I fear I would lose my self.
So for me, publicly identifying as autistic is not just a tool of public advocacy and identification with autistic community. It is also a rebellion against the parts of myself that were divide the disabled community and unify the dual parts of my disabled self.