Autistic Future

The word ‘neu­ro­di­ver­si­ty’ has come a long way. What start­ed as a fringe term has gone main­stream. What was a sig­ni­fi­er of rad­i­cal ideas has become a buzz­word. The word, and many of the con­cepts that sur­round it, are get­ting watered down by peo­ple who use it with­out mean­ing what it used to mean: a fierce, unyield­ing com­mit­ment to the idea that every­one gets cer­tain things: equal­i­ty under law, dig­ni­ty of risk, self-deter­mi­na­tion, and real oppor­tu­ni­ties to build a life worth liv­ing. It meant build­ing rich, diverse coali­tions with many dif­fer­ent peo­ple to meet our com­mu­ni­ty’s needs but nev­er rely­ing on any­one who won’t agree to our full human­i­ty as a basic ground rule of work­ing togeth­er. One of the upsides of our grow­ing vis­i­bil­i­ty is a con­stant flow of new peo­ple into the com­mu­ni­ty. With the def­i­n­i­tion of some of the words many of us used to state our col­lec­tive iden­ti­ty loos­en­ing, we need to talk more about the things at the heart of Autis­tic cul­ture and com­mu­ni­ty so that new peo­ple find out what it all means. One such con­cept, one we real­ly can’t afford to lose, is mutu­al sup­port.

Cor­rec­tion: A quote from an arti­cle by Julia Bas­com was orig­i­nal­ly mis­atributed to non­sense­wake­supthe­brain­cellz, the Tum­blr user who quot­ed it.

Tum­blr, the quirky, con­tro­ver­sial, noto­ri­ous­ly unprof­itable social media plat­form, may final­ly dis­ap­pear. Ver­i­zon’s deci­sion to clear the site of adult con­tent has gone over bad­ly with users, in part because Tum­blr has always housed sig­nif­i­cant amounts of adult con­tent, in part because hap­haz­ard enforce­ment of the new rule has affect­ed SFW blogs. A sig­nif­i­cant num­ber of users have already decid­ed to leave. It is pos­si­ble, though by no means cer­tain, that Tum­blr could sur­vive with­out peo­ple who use Tum­blr as a source of adult con­tent, but many believe the depar­ture of fan­doms is a fatal blow to the social net­work. Users are back­ing up their con­tent and gath­er­ing oth­er con­tact infor­ma­tion for their friends, even if they intend to main­tain their accounts if pos­si­ble, because of wide­spread pre­dic­tions of Tum­blr’s demise.

Since Ver­i­zon announced the new rule, peo­ple who have used, loved, and hat­ed Tum­blr have been eulo­giz­ing it. In the com­men­tary on the social net­work, its past, and its like­ly-lim­it­ed future, autism comes up as a theme among crit­ics and mourn­ers alike. Some of the tweets are by peo­ple who have iden­ti­fied them­selves as Autis­tic:

Twit­ter users who iden­ti­fy them­selves as Autis­tic dis­cuss the mass-pull­out 

Oth­ers are ableist and undig­ni­fied uses of autism as an insult:

Like Tum­blr mourn­ers, the social net­work’s detrac­tors asso­ciate it with autism

Note: this is much more per­son­al and con­fes­sion­al than the con­tent of this blog usu­al­ly is. Read on if you are okay with that. Oth­er­wise, check back lat­er.

Some­times, I wor­ry that I might be becom­ing invis­i­ble. I moved back to the town where I grew up, to the state where half my fam­i­ly has been for four­teen or fif­teen gen­er­a­tions, and bought a lit­tle house. I dri­ve one of the big SUVs that are ubiq­ui­tous across the sun­belt. I take good care of it as best I can afford and change its oil in my dri­ve­way every 3,000 miles. I vote. I go to church. I do a lit­tle wood­work­ing. I have the same kind of block-head­ed mutt as many of my neigh­bors. I join things like com­mu­ni­ty bands. Indeed, if I was­n’t a bit unusu­al in terms of gen­der pre­sen­ta­tion, I might be con­sid­ered very old-fash­ioned. I’m no one’s men­tal image of an Autis­tic adult. I have crushed every stereo­type, blown the odds out of the water, and become con­cerned that big parts of who I am will sim­ply van­ish.

Becom­ing, and help­ing oth­ers to become, free and inde­pen­dent was the goal of every­thing I have done up until this point. I fed my ado­les­cence and young adult­hood to the cause of self-deter­mi­na­tion. Now, I have those things for myself. No one is in a posi­tion to stop me from going as far as my abil­i­ties and work eth­ic will take me, and no one can pre­vent the occa­sion­al cheese­burg­er and beer scat­tered in among my most­ly respon­si­ble deci­sions. This is the kind of life that should be avail­able to every­one. It should not be an unusu­al­ly good out­come for Autis­tic adults.

Unfor­tu­nate­ly, it is. My days are filled with reminders that what I have is unchart­ed ter­ri­to­ry for many of my Autis­tic friends. Rarely does a week go by with­out a GoFundMe crop­ping up in my Face­book feed because a friend or acquain­tance needs mon­ey to cov­er an emer­gency, or, worse rou­tine liv­ing expens­es. Peo­ple I respect as much as much as any­one else in the world tell me about the indig­ni­ties of get­ting ben­e­fits, how they are shamed dur­ing the appli­ca­tion process even when they unequiv­o­cal­ly meet the cri­te­ria and need the help. It’s hard to put­ter around in my yard, cook a meal with expen­sive, fresh pro­duce, or trawl Craigslist for fun cars I might just be able to afford in a few more years with­out a sense of dis­so­nance and lin­ger­ing guilt.

I donate what I can, but the wider, neu­rotyp­i­cal soci­ety would con­sid­er my means fair­ly mod­est. When I am able to help, the anger I feel while I enter my cred­it card infor­ma­tion is vis­cer­al. I can feel mus­cle tens­ing and heart rate ris­ing as I add duct tape to a social safe­ty net that needs an over­haul. I lis­ten when I can, but my emo­tion­al resources have lim­its, too. Some­times, I want to spend my spare lim­it­ed time and mon­ey on light­heart­ed pur­suits. The ques­tion of how much fun it is okay for me to have while friends strug­gle to cov­er the neces­si­ties is one that defies an easy answer. I sus­pect I will grap­ple with it until such time as more of the Autis­tic com­mu­ni­ty has a dig­ni­fied lifestyle or until the end of my life, whichev­er comes first.

I social­ize more with neu­rotyp­i­cals than in the past because the life I have now brings me into con­tact with them. I enjoy these new friends, but these rela­tion­ships present their own prob­lems. My dis­abil­i­ty rarely comes up in con­ver­sa­tion. Unless some­one has occa­sion to Google me, new friends may not find out about an impor­tant piece of my back­ground and large swathes of my social life. Even peo­ple who know I’m Autis­tic, or would be com­plete­ly sup­port­ive if they did, are most­ly not in a posi­tion to under­stand my oth­er world. Sub­ject mat­ter that is enough a part of dai­ly life to come up in casu­al con­ver­sa­tion among my Autis­tic friends, with their high pover­ty rate, might be con­sid­ered too sad or dis­turb­ing to men­tion around neu­rotyp­i­cal ones.

I don’t know what to do about any of this except try to be vis­i­ble, give what I can, keep work­ing toward a world where few­er of us live in pover­ty, and engage in con­ver­sa­tion about the oblig­a­tion of those of us who are doing alright to every­one else. The size of that con­ver­sa­tion will cer­tain­ly grow as access to jobs and edu­ca­tion con­tin­ue to increase. If we are suf­fi­cient­ly suc­cess­ful, what I have will be more nor­mal in my life­time. These ques­tions will large­ly expire. Until then, I will do my best to put down roots with­out becom­ing invis­i­ble, to be both Autis­tic and a val­ued part of the cir­cles I run in now. I will think about how I can use what I own to dis­play both with pride. I will set finan­cial goals for giv­ing as well as things like retire­ment. I will keep in touch with oth­ers ask­ing in the same ques­tions in hopes that we can find some liv­able answers, if only slow­ly, in liv­ing.

These are fright­en­ing times for Amer­i­cans who val­ue things like human rights and the rule of law. Much that is going on in the news is par­tic­u­lar­ly dis­turb­ing to the dis­abil­i­ty com­mu­ni­ty, includ­ing Autis­tic peo­ple. Many of us, espe­cial­ly those who have advo­ca­cy expe­ri­ence from the Neu­ro­di­ver­si­ty Move­ment, want to see what we can do to help. Most of us need to prac­tice good self-care to feel our best in a cli­mate which feels increas­ing­ly threat­en­ing to most mem­bers of minor­i­ty groups.* Many of us feel both impuls­es strong­ly and simul­ta­ne­ous­ly, but activism or advo­ca­cy and self-care aren’t the same thing. Often, a giv­en course of action will serve only one of those impor­tant ends. It is impor­tant to eval­u­ate which one wants to do in a giv­en moment and make deci­sions that will accom­plish the goal in ques­tion.