Is autism a disability or an identity? Why was I so excited to identify as autistic? Isn't autism supposed to be a disability, a diagnosable disorder?
It's literally in the name, autism spectrum disorder. You've probably heard a lot of autistic self-advocates refer to themselves as autistic rather than saying they have autism. And sometimes we even talk about autistic pride.
There are very good answers to all of these questions, but to make sense of it all, it helps to get a few things straight. Hi everyone, Paul Micallef here from Autism From The Inside. I make weekly videos sharing the human side of autism, so make sure you hit subscribe to get the latest content.
So when I first typed autism into Google at the very start of my self-discovery process, the definition that it gave me is that autism is a mental condition present from early childhood characterized by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts. Why was I so excited to identify as autistic? Why did I see this definition as something to be proud of, something that I was really happy to share with other people and that I wanted to literally shout from the rooftops saying that, yes, this is me and this describes my whole life?
So the answer lies somewhere in the origins of how autism first came to be described in the medical community. And in that medical system, a diagnosable disorder is essentially a list of deficits, a list of things that a person needs to be deficient in order to receive the diagnosis of this particular psychiatric disorder. Things like repetitive behavior, restricted interests, deficits in social reciprocity and inability to form and maintain relationships.
So while all of those things might be objectively factually true, which is really helpful if you're a diagnostician, they clearly don't tell the whole story. In other words, in an effort to be scientific and objective, they leave out the human side of autism. And that's why many autistic adults and an increasing number of autistic children as well are rethinking autism as an identity, not just a diagnosis.
So an identity is a very different type of classification that mostly deals with how I feel about myself. Some examples of identity statements for me could be things like, I am a man, I am Australian, I am autistic, I am an engineer. These are all loosely based in the facts, but the use of them expresses a lot more than just the objective observable nature of the situation.
Not only does it communicate how I see myself, but it also communicates how I want other people to see me as well. So I've said I'm Australian, for example, whereas others may choose to include part of their ancestry or culture in that identification. Someone might say I'm Chinese Australian or Australian Chinese.
I'm sure there's a difference. It's more than just a description of the facts. For example, if someone were to ask about my ancestry, I identify as Mediterranean because that kind of feels like it fits.
Whereas the fact of the matter is maybe half my genetics at most are from that area. It's the same with identifying as an engineer. Do I work as an engineer?
Well, I used to, but not anymore. But I also have an engineering degree and I spent five years, five very formative young adult university years studying engineering with lots of other people who also went on to become engineers who I am still friends with to this day. So that was a very formative time.
And if you include all the time together, I studied and worked as an engineer for 10 years of my life through that very formative period. So I feel like I'm an engineer. I still have a deep connection to that.
And when you think about it, when I am describing my identity, it's not so much a statement about me. It's a statement about the people that I identify with. It's the people that I feel like I have shared experience with, who I can talk to on a wavelength that others may not understand.
And similarly, when they talk, when they express themselves, I can understand certain things about studying engineering and being an engineer that if you haven't done those things, it might not be so easy to resonate with. So in a similar way, autism is something that I'm proud of. It's something that I'm public about, something that I want people to know about me.
And while that identity is loosely based on the medical diagnostic criteria, it's so much more than that in reality. The shared experience that I feel with other members of the autistic community is absolutely beyond words. And when I try to explain it to someone outside of the community, it feels like it gets lost in translation a bit.
One of the reasons that so many people do claim autism as an identity, not just a diagnosis, is that it affects every part of life in ways that are not immediately obvious from the outset. In medical terms, it's a pervasive developmental disorder, as the doctors would say. So with that said, it also makes sense why some people with an autism diagnosis do not choose to also identify as autistic because it's a deeply personal thing.
Is it something that I feel is a core part of my personality or is it something that isn't really that important? And I don't necessarily need to hold it front and center. That's similar with the concept of a disability.
It goes well beyond the facts of the situation and some people view themselves as disabled and that that is something to be proud of as well. In a practical sense, there are lots of ways that autism is quite literally disabling. It can be absolutely crippling in some cases.
It's a disturbing fact that many autistic people can't leave the house and the unemployment statistics are horrendous, but at the same time, many of us don't want to be considered as disabled and that using that word just doesn't feel right. If a person has only one eye, are they disabled? What about two eyes?
What about three eyes? It really depends on what standard you're measuring against. If my abilities are significantly above average in some areas and significantly below average in other areas, does that make me disabled?
Well, yeah, kind of in a way. One example that I use to try and illustrate this when I'm speaking to organizations is to ask people in the audience to raise their hand if they wear glasses. And there will always be a significant number of people in the audience who wear glasses.
So then I'll say, keep your hand up if by wearing glasses, you also identify as being disabled. And almost everyone puts their hand down. Just because I wear glasses doesn't mean that I am disabled, even though quite literally by definition, it's an impairment of my vision, which is why I'm wearing glasses.
So there is a physical impairment there compared to the norm of everyone else, but that doesn't necessarily translate to a willingness or an appropriateness to adopt an identity as disabled or impaired in any way. So in summary, autism is technically medically a disability, a diagnosable psychiatric disorder, but this answer misses most of the picture. Identity is about how I see myself and how I want others to see me.
It's identifying with other people who share my experience. And that's why for many autism is not just a diagnosis, but an identity that we can be proud of. It's also why not everyone will agree.
And some people with an autism diagnosis will not want to claim it as part of their identity. So what do you think? Is autism an identity for you?
Do you also consider yourself disabled? Perhaps there's some other way that you like to identify or other language that you like to use to describe yourself. So please leave a comment.
I'd love to hear your experience. Otherwise, thanks for watching. I hope you found this interesting and I will see you again next week.
Bye.
