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.

Despite Everything, I Don't Hate April

The month of April has always held a special place in my heart. Spring is fresh in the air, it's still early in the year but not too much so, and the weather is pretty cooperative in the not-too-hot-but-not-too-cold way. But it's most likely due to the fact that it's my birth month, as I was born on the eighth. In fact, April holds a lot of birthdays of people I love - one of my closest friends' birthday is four days before mine, my father's is towards the end of the month, and my late grandmother's was six days after mine. It's always been a month of celebration in my life, and I wouldn't have it any other way.

But since becoming more involved in the autism world, I see people who don't like April as much as I have. That's because April has somehow been deigned "Autism Awareness Month" and with it comes a lot of feelings on how it's handled. But in spite of all the issues that come with the concept of "autism awareness", I honestly can't bring myself to hate April because of it.

I know that looks like a controversial statement from an autistic person. Just hear me out.

Neurotribes Made Me Emotional, And That's A Good Thing

I may be autistic, but I'll be the first to say there's a lot I don't know about autism. My recent forays into learning about autism and the wider autism community have shown me that there's a ton of things that explain a lot about myself (my quirky habits, my abhorrence of change, my ability to get emotionally overwhelmed) and how much I have yet to know about autism as a whole. The more I explore on the Internet, in books, and in relating to other autistic people, the more I get invested in the subject.

So when a friend told me she attended a TED Talk conference where one of the speakers talked about autism, I was beyond intrigued. For months I waited impatiently for the talk to make its way online and when it was finally uploaded, I found something incredibly unique - someone who looked into how autism was "discovered" and how it came to be perceived.

Watching this got me intrigued. There's plenty of accounts and blogs detailing about what it's like to be autistic,  what it's like to parent an autistic kid, and the many scientific studies into what autism actually is, but not really much of a history of autism. I probably mentioned here before how I'm a history aficionado so of course this quickly became a favorite video. And when I found out this presenter, science reporter Steve Silberman, was coming out with a book on autism's history, I pre-ordered it as fast as I could. In a world where autism is discussed in either cold clinical terms or overwhelming emotional rhetoric, this posed an alternative view I desperately wanted to see - an objective look at autism by examining its historical roots.

There's No One "Right" Brain in Neurodiversity

Growing up autistic in a non-autistic world often meant feeling perpetually alone. Once I knew I was different, I felt separate from everyone else and nothing would ever make me like anyone else.  I felt no one would ever understand me, much less help me shed my shitty self-esteem. If no one else was like me, how could anyone "get" me? And no matter what I was ever told by anyone, I felt that being autistic was akin to being lesser. Being autistic meant being more trouble to everyone else. And worst of all, being autistic was wrong.

In other words, I really, really wish I knew about neurodiversity a lot sooner than I did.