Sunday, May 28, 2017

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.

I came upon this piece through one of my close disability community connections. She emailed me and a bunch of people the article wanting our thoughts and critiques. I initially had trouble deciphering the article because it had a lot of technical language that went over my head. But in examining it closer with the help of others, I came across an unspoken implication that got under my skin:

According to Escher, I am not "autistic enough" to represent what autism is and thus not worthy of needing help.

I wish I could say that Escher's implication is an outlier in the wider autism community. It seems incredibly callous to say that only some people can truly be representative of an entire population and others aren't. And yet I see many autistic advocates voicing their opinions be dismissed by others as being too "high-functioning" to truly get the complexity of being autistic in favor of people who have more support needs. It's almost like if you can string together enough words to form a coherent sentence in writing or speech then people will think you can't really attest to what being autistic is like. And if you already present somewhat "normal", then you don't really have any struggles worth talking about and needing help with anything.

These criticisms remind the historian in me of the concept of "the worthy poor". Originating in the late 1500s and early 1600s in Protestant England, disadvantaged populations were split into two camps in determining who was worthy of assistance. The "worthy poor" consisted of people who seemed helpless in meeting societal expectations (e.g. orphans, widows, the visibly disabled, frail elderly) and the "unworthy poor" who people thought were purposely rejecting societal expectations (e.g. able-bodied, unemployed, alcoholics). This concept persists to this day in where people will reject welfare assistance as going to "lazy" and "entitled" people but more worth investing in children's programs. The disabled are still largely seen as being "worthy" of charity, but it looks like the "worthy" and "unworthy" concepts play into this field as well in how "disabled" you present. And this only creates friction in the disability community in how they're served.

Despite having outside therapeutic intervention and an in-school aide, I grew up exclusively among the non-disabled and neurotypical. Schools determined early on that I didn't need special education and any behavioral assistance I would receive would be minimal. I was also involved in many local community events and activities from my synagogue's youth group to local theater acting classes and summer camps with understanding adults acting as unofficial liaisons in including me among my peers. While this obviously had the upside in me being able to understand and integrate in the wider world, I was left with the impression that I shouldn't ask for nor expect any help. I didn't think anyone would believe me if I told them about my autism and thus they wouldn't give me anything should I ask. Everyone else didn't seem to have trouble fitting in and not needing anything extra, so why should I presume I should begin to ask even if I needed it?

Needless to say, this presumption has bitten me in the ass more than once. Despite presenting as "normal" to the average person, I've struggled with making friends and finding and keeping work. Various emotional outbursts have cost me more than one internship and job in my twenties and almost got me kicked out of undergraduate school. My discomfort in pursuing friendships because I didn't know what I was doing has made it hard for me to widen my social circle. If it weren't for my parents insisting I advocate for myself, my grad school advisors intervening to make my studies more manageable, and my current workplace going above and beyond in trying to accommodate me, I would have never gotten anywhere. I'd be perpetually stuck in limbo.

This is not to say I'm more worthy of assistance and advocacy than someone who presents more autistic than I. I'll be the first to recognize my privilege of being able to project a "normal" state and largely adjust to societal expectations to not need for much. But to presume that I or anyone like me shouldn't get any support because of our relative privilege is callous. Creating a hierarchy of autism affect like Escher's matrix feeds into the "worthy" and "unworthy" poor narrative, and it does nothing but pit autistic people against each other to fight for their rights. It perpetuates an "us versus them" mentality and I refuse to buy into it. Every autistic person needs some kind of help and accommodation to live a full, happy, and healthy life and that assistance looks different for each individual. And because autism is a spectrum, every perspective from every autistic person is worthy of consideration. To presume otherwise is just wrong and damaging for all.

There is no such thing as an autistic person who doesn't need help or advocacy. We all have legitimate needs and deserve to have a voice in advocating for those needs. All autistic people are "worthy" autistics and should be treated as such.

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