Well it’s Autism Acceptance Month (not ‘awareness’ because people already know we exist, they just need to stop treating us like shit) and I feel like now I should probably reflect a little. Mainly, why I like the term Autism Spectrum Disorder/ASD/being ‘on the spectrum’, but have gotten a little uncomfortable with the term ‘autism’.
Now, when I was growing up in the late 1990’s/early 2000’s nobody realized the autism spectrum was a thing. It was either distinctly Asperger’s or stereotypical autism. This was a bit of a problem for me. When I was two years old, it was clear something was not quite normal about me. I was speech-delayed. I was diagnosed with Pervasive Developmental Disorder–Not Otherwise Specified (PDD-NOS), and because of my speech delay I could not be diagnosed with Asperger’s (the type of autism that describes me most accurately) on a technicality. So for the longest time I knew something was wrong with me, but I didn’t have a word to describe it. You can tell how growing up would’ve been difficult.
Things have definitely gotten a lot better now that I can be described with the autism SPECTRUM definition. But I feel like because of the term ‘autistic’ I am still subject to a lot of discrimination in the world of post-secondary education.
See, when most people think of autistic people, they think of those who have less capabilities/more difficulties than most people. While it is true I need some accommodations, for the most part I’m not really ‘disabled’. I’m just differently abled. This is one reason why I’m starting to switch to the Asperger’s label, which I’ll get to in a minute. But, basically, when people learn that I am ‘autistic’ but am actually very smart and capable (except when I’m not), they don’t know how to react. Sometimes they’ll have trouble understanding why I have difficulty with group work and can’t (or won’t) accommodate me, sometimes they’ll tell me to my face I’m not ready for work only to deny it when I confront them about it later, sometimes they’ll go behind my back and say I’m not ready for college level education because I’m not performing to a certain, impossibly high standard, and other times they’ll try to push me to my limits in a very condescending and harsh tone because I’ve made it so far. And don’t think of expressing your feelings and explaining how you feel you’ve been treated because they won’t sympathize with you.
This is one reason I actually like functioning labels because it can help both the ASD person and the people around them gauge what they are capable of and what they need help with. Just saying ‘autistic’ can mean anything. But because there will always be some people who use these labels to discriminate further (denying lower functioning people agency and higher functioning people accessibility) a lot of people on the spectrum don’t like using them and just say ‘autistic’.
I feel the term ‘autistic’ has become too broad, not helpful, and in some cases, harmful. My main reason for saying this is because far too often, I see people from all over the spectrum with different interests, skills, and challenges all lumped together in the same support group in the hope that we’ll all get along, have fun, and learn the same thing. No one autism spectrum person is the same, and I feel like saying we’re all united because we can describe ourselves as ‘autistic’ is untrue. We all face discrimination and ableism, and we may have similar quirks, but we don’t all have the same experiences or are affected by our neurotype the same way.
But the worst thing is that I can’t help but feel that a lot of people who are profoundly NOT on the spectrum are using the autism label because they are just a little bit different/have some problems (when something like ADHD or OCD might be a more accurate and helpful label). Why do I say this? Because when I see someone describe themselves as autistic but behaves like a complete bigot and asshole, I get the impression that they’re lying and/or using it as an excuse for shitty behaviour. There’s an entire group of aphobes (people who treat asexual people like shit and think they’re all straight for some reason) with a lot of members calling themselves autistic and it’s VERY suspicious.
So because of all this, while I am proud to say I am on the autism spectrum, I’m starting to call myself an Aspie (person with Asperger’s) than just ‘autistic’. Asperger’s is the most accurate place on the spectrum I belong to and it’s honestly kind of empowering for me, letting people know I am capable but just need my own space.
This is all how I feel, of course, and I’m not forcing other people on the spectrum to change their label or feel differently. ASD rights have come a long way, but work still needs to be done. We need allistic people to realize autism is not always a one-size-fits-all definition, realize we all have our strengths and limits, and be willing to work with us to accommodate us, rather than just make assumptions based on how we usually work and then get confused and angry when they get overwhelmed or need help. I won’t be surprised if having more descriptions for autism might be necessary.