There’s something interesting I’ve noticed about the way people talk about autism. It’s that non-autistic people and autistic people always seem to describe autism in a very different way.
Ask a non-autistic person (non-autistic people have in the past and still continue to dominate the narrative about autism) what autism is, and if they’re at least educated to the extent that they’ve read something, and they’ll talk about “deficits in social communication, restrictive and repetitive behaviors, restrictive interests,” and maybe “unusual responses to sensory stimuli.” The language is very medicalized, and it’s written from the perspective of an outsider looking in (because, well, that’s exactly what it is).
Ask an autistic person what autism is, and they’ll probably say something that can be reduced down to “I have trouble controlling my body, and I find a vast number of everyday sensations to be uncomfortable.” Maybe, depending on the person, you’d get “I feel my own emotions very strongly, but I can’t understand them,” or “people are unpredictable and they’re always saying and doing things that don’t make any sense.” Essentially every autistic person’s experience of autism, at least as I’ve seen described, has fallen somewhere within these broad descriptors. Of course autism is a spectrum, and that means that each autistic person will be different and present differently, and as such it would be unwise to say that every autistic person’s experience is exactly the same as every other autistic person’s. However, every single autistic person who I’ve ever met or read the writings of I’ve been able to relate to on a very deep, and very autistic, level. Every. Single. One. No exceptions. Even the autistic people who others might think are nothing like me, I’ve realized that they’re all a lot like me, because our autism is the same in the sense I’ve described above. Even though the spectrum is broad and our experiences aren’t exactly the same, it makes sense that we’re all called autistic.
Anyway, I got a little off track there, I apologize. The point I wanted to make are the differences between how autism is described by non-Autistics versus the way autistic people talk about autism. Non-autistic people describe autism as they see it, from the outside. For example, non-autistic people talk all the time about perceived “social deficits” that they think autistic people have. But, myself and many other autistic people feel that these aren’t social “deficits” at all, but are differences in the way we communicate and perceive. Supposed “social deficits” aren’t intrinsically autism, they’re a surface layer perception of what non-autistic people see when they look at autistic people. You could say the same for a lot of things.
Autistic people, on the other hand, describe autism from the inside out rather than the outside in. What autism feels like versus what autism “looks” like. It’s an important difference. A lot of the misunderstanding surrounding autism (for example, autistic people lack empathy, autistic people aren’t aware of the world around them, non-speaking means non-intelligent, etc.) comes from non-autistic people observing autism from the outside and drawing conclusions based on that. We autistic advocates have slowly been able to correct these narratives, say what’s actually going on. We know autism because we experience it ourselves, and thus it is the autistic perspective that is most valuable in unlocking what autism actually is.
With this realization, I ask my readers to try to focus more on reading the autistic perspective when it comes to autism. The way we describe autism is more accurate than how others perceive our autism. Our perspectives are valuable, and they can be valuable in helping you understand your child, your student, your friend, or even yourself if you’re autistic too.
You’re in the right place given that I’m autistic, but I encourage you to read the words of others if you haven’t already. While we’re all autistic and are at the core somewhat similar in this regard, we’re all very different and one person’s experience will certainly not come close to reflecting everybody. I do not intend to present myself as “the voice for autism,” and so please do go and read other’s words. They have different experiences and things to say, and through that you can learn even more about autism than you ever could just from one voice.
Visit my “Resources” page at the top of my blog. I’ve listed quite a few autistic bloggers who I’ve really enjoyed reading, and the list is ever growing. Give them your time. All of our perspectives as autistic people are infinitely valuable as we see autism from the insider’s perspective.