Autistic Future

Sep­tem­ber is Sui­cide Pre­ven­tion Month, and this is the oblig­a­tory state­ment on some­thing I want to be fin­ished dis­cussing. Sui­cide is a prob­lem for Autis­tic peo­ple. A year rarely goes by with­out at least one fair­ly high-pro­file attempt or cri­sis tinged with sui­ci­dal­i­ty. Sui­cide lurks, with the oth­er ear­ly killers like eat­ing dis­or­ders, along the fringes of our lives pick­ing off acquain­tances, col­leagues, and friends. It’s hard to pin­point the cause of the prob­lem because there has been rel­a­tive­ly lit­tle research on men­tal health and qual­i­ty of life for Autis­tic peo­ple alive today, but there are obvi­ous issues that might be con­tribut­ing to these deaths.

Such social prob­lems are prob­a­bly also a fac­tor that dri­ves up our sui­cide rate. Even the best men­tal health care can’t solve prob­lems that arise out­side of the indi­vid­ual. Autis­tics face soci­etal bar­ri­ers to the two things that may be the only uni­ver­sal human desires: con­nec­tion and auton­o­my. Com­pan­ion­ship is a human need, a rea­son to keep going when life’s many chal­lenges arise. Too many Autis­tics are nev­er empow­ered to find the place where they can slip into some pos­i­tive social role, nur­ture oth­ers, and be cared for in return. So long as they remain iso­lat­ed, these peo­ple will be par­tic­u­lar­ly vul­ner­a­ble to sink­ing under the bur­den of the human condition.

Auton­o­my and hope are cru­cial, too. Recent media cov­er­age of fal­ter­ing, white, work­ing class com­mu­ni­ties in Amer­i­ca has cit­ed despair as the under­tow that is pulling whole towns toward ear­ly graves. This is a prob­lem for the many Autis­tic adults whose options in life are very lim­it­ed. Peo­ple who need hous­ing sup­ports are lucky to find even one good, near­by option. Long wait­ing lists for ser­vices and tight eli­gi­bil­i­ty require­ments can pre­vent young adults who want to become more inde­pen­dent from leav­ing home. Peo­ple who don’t dri­ve can­not inde­pen­dent­ly decide where to spend their time in much of the coun­try. We live in a soci­ety where work is often part of per­son­al iden­ti­ty, and mon­ey is the key to inde­pen­dence. Our unem­ploy­ment rate is appalling even by dis­abil­i­ty com­mu­ni­ty stan­dards. Col­lege or trade school may improve one’s odds, but hous­ing sup­ports are an issue there, too. Where does that leave an Autis­tic twen­ty-some­thing, even with­out under­ly­ing men­tal ill­ness, who is unem­ployed, liv­ing unhap­pi­ly at home, and stuck in the house all day for want of pub­lic trans­porta­tion? Until more Autis­tic adults have a real­is­tic chance at ful­fill­ing lives, too many will see death as an option.

These are things that I have said before. I am tired of dis­cussing this prob­lem because it seems sol­u­ble, but not enough is done to solve it. This is a mat­ter of life and death, but a sig­nif­i­cant con­tin­gent of autism advo­cates see oth­er pri­or­i­ties as much more urgent. Every dol­lar that goes into cure research isn’t spent on help­ing peo­ple who are alive today stay that way. The idea of a cure is inher­ent­ly part of the prob­lem because it invites Autis­tics to hope for dif­fer­ent selves instead of learn­ing to love the only selves we’re ever like­ly to have. That way lies death. How­ev­er, what­ev­er we want for the future, there is no rea­son we can’t take on today’s per­ils togeth­er. It is dif­fi­cult to see how any­one could con­sid­er it a good use of resources when orga­ni­za­tions almost com­plete­ly neglect peo­ple who are in need today. I won­der how many more peo­ple in my com­mu­ni­ty will die before pri­or­i­ties change and more of the research becomes about things like inde­pen­dent liv­ing sup­ports, qual­i­ty of life, and sui­cide pre­ven­tion. Until we start tack­ing the obvi­ous con­tribut­ing fac­tors and aug­ment com­mon-sense solu­tions with fur­ther research, sui­cide will remain a part of high mor­tal­i­ty rates and ear­ly death in the Autis­tic community.

It will be dif­fi­cult to address the com­bi­na­tion of health and social issues like­ly at the root of the prob­lem until Autis­tic peo­ple alive today are val­ued enough that more fund­ing is avail­able for pre­serv­ing and enrich­ing our lives. How­ev­er, Autis­tics have nev­er been pas­sive vic­tims. We can’t and won’t tol­er­ate an intol­er­a­ble sta­tus quo until well-inten­tioned oth­ers deign to save us. If we use the tools we have to sup­port each oth­er, there is hope. We can be atten­tive to peo­ple who seem iso­lat­ed and inten­tion­al­ly include them. We can check up on peo­ple who are known to be strug­gling and be vul­ner­a­ble in ways that show them that they’re not alone. We can make our com­mu­ni­ty wel­com­ing to new­com­ers who des­per­ate­ly need the shel­ter of Autis­tic space. We can spread the word about autism-friend­ly men­tal health ser­vices wher­ev­er they exist. We can advo­cate for poli­cies that sup­port inde­pen­dence, like employ­ment first and walk­a­ble com­mu­ni­ties. We can refuse to sup­port dis­abil­i­ty orga­ni­za­tions that put all their resources toward a con­tro­ver­sial, per­haps impos­si­ble, long-term goal while peo­ple in need today suf­fer and die. Con­ver­sa­tions about autism are mov­ing in a pos­i­tive, prac­ti­cal direc­tion. Exter­nal sup­port for our efforts will grow over time, but we can’t afford to wait for it. As more and more exter­nal res­cuers arrive, let’s leave them sur­prised, as usu­al, at how much of the prob­lem we sort­ed out for ourselves.

If you’re in crisis, know that people care about you. Please reach out to anyone and everyone you trust to help you through this. Here are some resources:

National Suicide Hotline
Trans Lifeline

The Trevor Project

Emory Uni­ver­si­ty’s Sui­cide Pre­ven­tion for Stu­dents with Disabilities

How to Help a Sui­ci­dal Autis­tic Person