August 18th, 2016

Autism Advice Is Iffy, So Just Do Your Best

I don’t know many people whose mental image of an autistic adult is a twenty-something in an airport reluctantly entrusting a suitcase full of clothes to American Airlines, credit card and driver’s license at the ready, but that was my reality a few nights ago.

the image is my luggage, one pilot bag style briefcase crammed with stuff and one massive, rolling suitcase

My biggest problem that night wasn’t autism or ableism. It was whether the airline would keep up with my law clothes. In the past week or so, I’ve been in and out of various permutations of disabled space, disability advocacy space, and my Oklahoma/Texas family’s homes. Each environment comes with a distinct cultural environment, and each had a profound effect on who I am. How my life came to be so normal and boring is hard to say, but the last few days have given me occasion to think about it and plenty of time for consideration on the road.

Disability culture bends around the needs of the people in the room, values ingenuity in dealing with complex or conflicting access needs, and prizes opening whatever is going on up to as many people as possible. It’s asking about dietary restrictions and giving reasonable sick leave, and it shades comfortably into asking about pronouns and giving reasonable leave for minority religious holidays. It’s not just avoiding asking a given individual to do something she can’t do but often, for better or worse, keeping people within their areas of strength as much as possible.

Disability advocacy, especially disability rights law, settings are a little different. These blend aspects of the flexibility, warmth, and desire for inclusion found in disability spaces with the realities of interfacing with the outside world on behalf of the disability community. Grant applications and court filings have deadlines, and it’s important to meet them. A client’s or constituent population’s needs come first. All the same, people try to be accommodating and go out of their way to make things easier rather than more difficult. I came to disability culture and advocacy in my teens and in early adulthood and immediately loved the warmth and inclusion I saw.

My dad’s side of the family, from Oklahoma, now Texan, is different. My family is recently agrarian, and my ancestors grappled with tornadoes, blizzards, the constant dangers of large animals and heavy equipment, and scraping by with what could be made and raised at home in the years when very little cash money came in. Things are more comfortable now, but enforced self-reliance is the kind of memory that lives in blood and bone for generations. Every single one of us knows how to do something useful; most of us have several practical skill. We believe in challenge because it made us strong. We seek it out. Hard work and productivity are valued for their own sake. This kind of upbringing prepared me well for adversity, from the discrimination I sometimes faced growing up to the rigors of law school. I attribute a lot of my ability to achieve my goals in a world that isn’t built for me to early exposure to a way of life that emphasizes resilience.

It just so happens that I thrive on physical and intellectual challenge. Not every autistic, not every person, should aspire to the parts of my life that involve bouncing around the country like a cheap, rubber ball from a vending machine, but this is what it looks like for me to be doing alright. I think being pushed early in life helped me get here, but I hear reports of more fragile autistics. What sharpened and tempered me might have broken them. This is why some of the talk about autism, even in neurodiversity/realistic circles, is worrying me these days.

Coalitions of autistics, parents, and professionals are recognizing that a cure is not coming any time soon and talking about how to have a good, autistic life. This is a positive development. Unfortunately, the people who often try to turn exploitative profits from disability are hard at work turning changes in perceptions of autism into income, and people who may have better motives but tend to think their own approaches are right for everyone are getting loud in new ways. Preachy books and blog posts offering one-size-fits-all solutions for raising successful autistic children come out every few months and attract plenty of attention. The concept of an easy answer is becoming more popular, and lucrative, as the reality that autism is here to stay sinks in.

Autism discussions take a dangerous turn when when people who are claiming some kind of expertise try to prescribe a solution for every youth or young adult and every family. We don’t have any research yet. The interest in how to produce good outcomes without getting rid of autism is just taking off. The long-range studies we need to really know best practices aren’t even grant applications yet, and reductions in research funding may mean that we don’t get this information for some time. For the time being, all we can do is deal with autistics as individuals. Anyone trying to sell a solution that fits everyone is probably just that: trying to sell something. No strategy will work for everyone, and the ones that are extremely gendered may be particularly ineffective for this highly gender-variant population. Until we actually know which tools and strategies are most effective for producing happy, useful, self-determined outcomes, until we actually know what to try first, all we can do is try to find out what works for people on an individual basis. As long as nothing you’re doing flies in the face of human rights and dignity, as long as you’re attentive to what the autistic person in question is communicating to you through words or other means, thinking about the Golden Rule, and replacing strategies when it becomes clear that they don’t work, your guess is probably as good as anyone else’s. Just keep doing your best.

Postscript: my luggage arrived safely at RDU.

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