Autism is not a Disease

While Autism may be challenging at times, it is also a part of who I am. I don't need a cure for who I am.

I had an interesting experience this morning.

I signed up for an “Autism in Adults” study on a whim via Facebook, because I think to myself, “Hey, I’m an adult with autism.” I know, most people will make impulse purchases, but no, I sign up for a scientific study, go figure.

Anyway, I get the screening call today, and it seems to be going fine. But then the person on the other end says something about medication being involved, and I am like, “Hold up, what?”

See, I signed up for this study assuming it would be more on the research side of things. Since there are not a ton of studies on adults with autism (most studies focus on kids). I did not go into it thinking there would be medication involved.

So I ask them what symptoms is this medication supposed to treat?

For the record, I do not like describing conditions of autism as “symptoms,” because not all conditions of autism are medical or debilitating. However, in this context, we are talking about medication, so surely this would be focusing on more debilitating conditions of autism right?

This person just responds with “autism.”

…

*deep sigh*

So, I have to ask more specifically for a list of “symptoms, because obviously there is a lot that goes into autism (and not all of those conditions are even debilitating.) And, guess what, this person does not have a list.

Needless to say, I decline going any further.

(For the record this person was pleasant and professional. I really should have done my due diligence, and researched this study first.)

That was a very interesting experience, because it forced me to confront my feelings about Autism as a condition and as a disability.

For me personally, I do not feel as though my autism severely hinders me. Sure there are some things that are harder for me, socializing, managing my energy levels, sensory overload, sure. But first, these are things I can handle, and second I feel like this is all balanced out by the benefits of my autism, such as my analytical skills, and my sense of empathy.

However, I do still recognize there are conditions of autism that can be debilitating, and even severely so. For folx that are non-verbal, for example, it is truly difficult to navigate in a world that requires you to be verbal, without some kind of support.

I think my issue with the conversation I just had is that “autism” in its entirety was considered the “symptom” in question. Like autism is nothing but a debilitation, a disease that needs to be cured. And really, I beg to differ. For me at least, while my autism makes my life harder in some ways, it is also a part of who I am. The idea of “curing” my autism, quite frankly, is about as appealing to me as getting a lobotomy.

And honestly most of the things that make my life hard have less to do with my autism, and more to do with the world itself. As a very small for instance, some meetings in activist spaces can go on for hours, and this is honestly exhausting for me, as it leads to sensory overload. Not just because I am forced to pay attention for hours, but because of the spaces I have had to inhabit pre-covid. They were loud, and there were so many people. And then there was the emotional sensory overload. It was a lot.

But you know what solved a lot of that for me? Zoom! Zoom is honestly so much better for me than in person meetings ever were. I am in my own space, I can monitor the volume on my computer, and when I start to get tired from socializing, I can briefly excuse myself by turning off my camera and mic. Plus the no eye contact thing is a plus!

(Unfortunately sensory overload is still an issue with Zoom, because of the length of some meetings. I would really appreciate a break in some of these meetings, especially ones that can go on for 2+ hours, but that is a discussion for another day.)

Now, I am not saying *all* of these spaces did not make accommodations. In fact, some spaces have made such accommodations even before pre-covid. The point that I am getting at is this is just one example of how our society may not make accommodations for people with disabilities, or people who are neurodiverse.

And much more to this topic at hand, this - at least in my experience - tends to be the source of my issues. Not my autism itself, but the fact that the world is built for neurotypical people.

So maybe we should spend a little less time trying to “cure” people with autism, and a little more time making the world a better place for people with autism. And while we’re at it, making the world a better place for neurodiverse people and people with disabilities in general.