The "Normal" Versus The "Worthy" Autistic - A Response to "The Autism Matrix"

My autism seems to be a shock to anyone I meet. When I tell people I'm autistic, the most common response I get is "Really? I never would've guessed!" I want to believe that it comes from a well-meaning place of surprise, but I can't shake the feeling that it's slightly condescending to me. Autism affects people in different ways and yet we as a society seem to only accept a narrow affect as being truly autistic - you must either be a "quirky" personality easily fixated on certain subjects and have little to no understanding of basic social interactions or be completely non-verbal completely isolating yourself from people with little to no control over your physical actions. I'm neither of these things and seem to project a certain sense of "normal" where only the most attentive would identify something is notably different about me. That doesn't mean that my diagnosis is invalid, but rather I don't easily appear to be what people seem to think autism looks like.

Case in point, the Autism Society of San Francisco president Jill Escher recently wrote a piece for The Times of Israel (a Jewish Times subsidiary) attempting to make identifying how autism affects people "easier" rather than relying on problematic "functioning labels". In it, she maps out via a "matrix" where different autistic people would be based on things like IQ, social skills, verbal language, support needs, and more. The article has since been taken down from the Jewish Times from what I can assume was a barrage of angry comments disagreeing with Escher, but it still can be viewed on the Autism Society of San Francisco website here. There are lots of reasons why people find this "matrix" format troubling (my favorite pieces on it are written by my friend Christine and prominent parent advocate Shannon Des Roches Rosa), but I want to talk about one particular criticism that affects me greatly: the notion of the "worthy" and "needy" autistic.

Autistic Language: What "Functioning" Even Mean?

It seems to be universally agreed that what makes humans different from other animals is our language. All animals communicate, but human language goes beyond non-verbal methods like body language and physical gestures to using spoken and written words. Unlike physical communication, words have the most value in how people communicate our thoughts, actions, feelings, and ideas. We have all decided that above everything else, words matter the most.

It's with this concept in mind that I want to talk about the language surrounding autism. There's lots of ways to describe autism and how it affects people and as many different viewpoints on how autism is discussed in language and tone. I don't want to get into the various tones of autism discussion because I know that'll cause nasty fights that I want to avoid at all costs. But I do want to talk about certain terms used and what they mean in how autism is seen by the world. This will take a couple of posts as there's a lot to go into, so bear with me and my thoughts.

Please note that these posts only reflect my personal views on autism language. I'm not going to dictate how other people should talk about autism because A) I'm not the boss of everyone, and B) people can get really angry when they're told what to do. I just want to explain how I feel about these terms and I hope that I can be respected for feeling that way. I won't tell you what to do or feel, so please do me the courtesy of not telling me what to do or feel.

Got that?

Good. 

Now let's talk "functioning" labels.

A Very Merry Autistic Holiday?

It's no secret that large gatherings of any level can be incredibly overwhelming for those on the autism spectrum. There's so much happening on both social and sensory levels that it gets stressful just thinking about it. There's the sheer amount of people in the immediate vicinity, the high expectation to talk to all of them in the right way, the preparation of the event in question, how to present yourself...it's all kinda much for anyone to handle. And if you're autistic, it's downright terrifying.

On top of being autistic, I have a ton of social anxiety. While it looks like I can increasingly handle myself well enough in group settings, I'm riddled with fear that I have no idea what I'm doing. Am I connecting with enough people? Am I engaged enough in the conversation? Am I hogging conversation too much? Am I maintaining the appropriate amount of eye contact? Nodding in the right places? Truly listening to people? All these things people take for granted requires a tremendous amount of thinking and planning, and it's so overwhelming just writing it gives me the shivers.

And what's a hallmark of the winter holiday season? Social gatherings, particularly holiday parties and family time. The two most stressful situations for almost anyone, let alone for someone who innately has trouble socializing to begin with.