Autistic Future

I’ll nev­er for­get hear­ing the Atlanta NPR affil­i­ate’s inter­view of some­one who iden­ti­fied as a per­son with autism. The dis­cus­sion was about par­tic­i­pat­ing in stud­ies or donat­ing his brain to sci­ence upon death. He made the com­ment that autism was the rea­son why he was nev­er able to become an astro­naut or mar­ry a super­mod­el. When he said that the only thing hold­ing him back from this spec­tac­u­lar­ly suc­cess­ful life was autism, I laughed so hard I almost cried. By def­i­n­i­tion, most neu­rotyp­i­cals are aver­age. While they are not sub­ject to the par­tic­u­lar prob­lems of impair­ment and dis­abil­i­ty, they are by no means immune from dif­fi­cul­ties. Nor­mal­i­ty does­n’t guar­an­tee an effort­less­ly amaz­ing life.

If you were neu­rotyp­i­cal, you would still be more like­ly to find your­self in the audi­ence than on the stage.

The man in the inter­view was old­er. I don’t see elab­o­rate fan­tasies of a per­fect, neu­rotyp­i­cal life paired with a vague, wist­ful sense that an autis­tic life can nev­er be quite suf­fi­cient near­ly as much among younger Autis­tic peo­ple. It isn’t, how­ev­er, entire­ly absent, and that wor­ries me. Autism-as-phys­i­o­log­i­cal­ly-ground­ed-impair­ment and autism-as-dis­abil­i­ty can be any­thing from net ben­e­fit to the cause of intense dis­com­fort. There has­n’t been as much autism qual­i­ty of life research as I would like to see. What I’ve seen in the com­mu­ni­ty, is that con­nec­tion to oth­er peo­ple, the oppor­tu­ni­ty to take on val­ued roles, and indi­vid­ual atti­tude make all the dif­fer­ence. After I start­ed writ­ing this post, I was for­tu­nate enough to attend David Pitonyak’s day-long talk on sup­port­ing peo­ple with chal­leng­ing behav­iors and heard that there is some neu­ro­science research sup­port­ing the impor­tance of con­nec­tion and val­ued roles.

That was­n’t sur­pris­ing. I’ve seen peo­ple who are very impaired find hap­pi­ness where they have an active social cir­cle and gen­uine ways to con­tribute. I’ve seen peo­ple with the most min­i­mal impair­ments, peo­ple whose prospects looked great on paper, self-destruct in the absence of one or both of these things. I’ve seen peo­ple fail to reach out and latch onto these nec­es­sary ingre­di­ents of well-being, when both are read­i­ly avail­able, because they can’t imag­ine life work­ing out for them. What makes me wor­ry about Autis­tics who believe every­thing in life would be good if they were neu­rotyp­i­cal is not just that it leads to dis­ap­point­ment with the way things are. That way of think­ing also diverts pre­cious time from mak­ing life as good as it can be into rumi­na­tion. It leach­es men­tal ener­gy  for real­is­tic ways to change con­di­tions in the here-and-now so as to make life bet­ter and tends to lead peo­ple to live their lives in their imag­i­na­tions. Imag­i­na­tion is a two-edged sword. Slow­ly, hour-by-hour, years of life can drip away into these fan­tasies. This may work some­thing like the finan­cial con­se­quences of a leak­ing pipe that goes unno­ticed until the mold prob­lem is vis­i­ble and the water bill astro­nom­i­cal. What has been lost may not be appar­ent until sig­nif­i­cant dam­age has been done.

So long as life con­tin­ues, it’s nev­er too late. A per­son who wakes up from dreams of neu­rotyp­i­cal­i­ty at 70, builds a life around what is, enjoys form­ing rela­tion­ships with accept­ing peo­ple and liv­ing into her strengths, and dies at 75 has­n’t wast­ed her life. How­ev­er, the wast­ed years are a tragedy one could pre­vent by teach­ing peo­ple to work around autism as a real­i­ty that isn’t like­ly to change. The loss is all the more ter­ri­ble for the fact that being neu­rotyp­i­cal does­n’t fix every­thing. Neu­rotyp­i­cals also have to be sat­is­fied with dreams that aren’t all achieved and chal­lenges that aren’t all sur­mount­ed. They’re by no means immune from things like dis­ap­point­ment, pover­ty, and lone­li­ness. All lives are vary­ing degrees of imper­fect. The worst part of liv­ing in dreams is that peo­ple who wake up and engages with real­i­ty rel­a­tive­ly late in life may not respond by seiz­ing every day they have left in both hands and their teeth. Some­times, they may despair and become part of the Autis­tic com­mu­ni­ty’s sui­cide prob­lem. They may destroy them­selves in sub­tler ways, like eat­ing dis­or­ders or sub­stance abuse.

For all of these rea­sons, I would advise Autis­tics not to spend much of their time on ques­tions of how things would be if they were neu­rotyp­i­cal. Who cares? They nev­er will be. Wor­ry­ing about how things might be is as much of a waste of your time as rumi­nat­ing on how you would live if you could fly. Any cure for autism that comes about in our times is like­ly to look a lot like the “cure” for Down Syn­drome read­i­ly avail­able to the hand­ful of Amer­i­cans finan­cial­ly and geo­graph­i­cal­ly sit­u­at­ed so as to have access to abor­tion in prac­tice. Besides, you prob­a­bly would­n’t be a bil­lion­aire, or an astro­naut mar­ried to a super­mod­el of the gen­der of your choice, if you were neu­rotyp­i­cal. You would just be a per­son with a dif­fer­ent set of strengths, weak­ness­es and prob­lems. You might or might not be any hap­pi­er than you are today, and, quick­ly or slow­ly, those ques­tions will steal your one, pre­cious life. Instead, ask ques­tions about where you could find more deep, mean­ing­ful con­nec­tions with oth­er peo­ple. Ask how you can move into roles that give you a way to con­tribute even if you can’t work. How could you advo­cate for your rights in ways that would expand that menu of options for thriv­ing? Do you need med­ical help, edu­ca­tion­al help, legal help, your friends’ sup­port, or some­thing else to get there?

I would advise pro­fes­sion­als pro­vid­ing ser­vices to Autis­tic peo­ple to ask the same ques­tions. Fig­ure out what would real­ly improve the client or con­sumer’s life. Don’t assume autism is the pri­ma­ry obsta­cle to the indi­vid­u­al’s hap­pi­ness. Fig­ure out what that real­ly is, and act on it. Teach self-accep­tance when you find your­self inter­act­ing with Autis­tics, espe­cial­ly young ones. Ask your­self what the ulti­mate end is. If full inde­pen­dence isn’t pos­si­ble for the per­son you see, what about a pos­i­tive, autonomous, thriv­ing inter­de­pen­dence? The par­tic­u­lars of suc­cess are high­ly indi­vid­ual, but the gen­er­al­i­ties don’t vary much between peo­ple. What can you do to make sure the peo­ple you serve have the same big-pic­ture things that you need to thrive? Don’t for­get that con­stant­ly reject­ing and try­ing to treat away the self one has prob­a­bly pre­cludes hap­pi­ness. Self-accep­tance, includ­ing autism accep­tance, is a nec­es­sary con­di­tion of Autis­tic peo­ple’s well-being that makes room for the things that are suf­fi­cient con­di­tions for well-being. It’s about more than hap­pi­ness. Some­times, it’s a mat­ter of life and death.