AUTISTIC FUTURE: A FUTURE OF OUR OWN

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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