Autistic Future
February 18th, 2017

Who Will We Be?

Com­mu­ni­ties are fun­ny things. They don’t exist until a crit­i­cal mass of peo­ple believe they do. They’re sto­ries that come to life if peo­ple tell them loud and long enough. Behave as if a peo­ple exists, go through the motions deter­mined­ly until it stops feel­ing arti­fi­cial, and some­thing will start to solid­i­fy. The sto­ry of an Autis­tic peo­ple that we are telling togeth­er becomes more tan­gi­ble every day, but we have time to make deci­sions while things are still mal­leable. Espe­cial­ly as we enter a time of adver­si­ty in the U.S., we need to make choic­es about what turns this nar­ra­tive will take.

For all our talk of shared iden­ti­ty, there are real­ly three broad bands of pri­or­i­ty and need along our spec­trum. There are peo­ple who are inde­pen­dent enough that we don’t need atyp­i­cal lev­els of sup­port. We’re at least as self-suf­fi­cient as any­one else in this era of mass-pro­duc­tion, dis­pos­able cloth­ing, oil change joints, and eat­ing out. We need accep­tance and the free­dom to live as we wish, to have the inter­ests, hopes, dreams and pri­or­i­ties we have even if they’re unusu­al. We need to accept our­selves, the strengths and weak­ness­es we have, and shake off self-pity and ques­tions about what might have been. We need to find oth­ers who accept, val­ue, and love us as we are. If we find these things, we’re often hap­py and pros­per­ous. If we don’t, we become part of our demo­graph­ic’s high rate of untime­ly death.

Then, there are the peo­ple who look least neu­rotyp­i­cal, who may have oth­er dis­abil­i­ties or chal­leng­ing behav­iors, peo­ple who com­mu­ni­cate uncon­ven­tion­al­ly, peo­ple who may be labeled ‘low func­tion­ing.’ These indi­vid­u­als get ser­vices and sup­ports at least some­times. The ser­vices and sup­ports they get are usu­al­ly, hope­ful­ly enough to pro­vide min­i­mal­ly ade­quate food, cloth­ing, hous­ing, and med­ical care. Hous­ing may mean an insti­tu­tion, either a tra­di­tion­al one or a small­er but equal­ly cold, drab, dan­ger­ous set­ting. Their lives are often devoid of the stim­u­la­tion, choice, and oppor­tu­ni­ties for healthy risk-tak­ing and per­son­al growth that make exis­tence worth the effort. As they age out of the pub­lic schools, they risk what a friend of mine calls “grad­u­at­ing to the tele­vi­sion,” enter­ing a pur­ga­to­ry of day­time TV that stretch­es on to the grave. This bleak land­scape is punc­tu­at­ed by abuse and neglect. Peo­ple in this cat­e­go­ry need their ser­vices and sup­ports pro­tect­ed so that they can sur­vive. They need to be lib­er­at­ed from the expec­ta­tion that no more than this is pos­si­ble for them so that they can real­ly live. They need inten­sive sup­ports to con­tribute in what­ev­er ways they can, express pref­er­ences, enact their wish­es, and have the rich vari­ety of expe­ri­ences that oth­er peo­ple enjoy.  They need the oppor­tu­ni­ty to form real rela­tion­ships with dis­abled and non-dis­abled peo­ple so that they don’t become the iso­lat­ed, vul­ner­a­ble peo­ple who are human preda­tors’ eas­i­est prey. Giv­en those things, they can exem­pli­fy how lit­tle impair­ment mat­ters for qual­i­ty of life.

The bulk of peo­ple around the mid­dle of the spec­trum may have chal­lenges in impor­tant areas of life, like self-care or work­ing, but they don’t usu­al­ly qual­i­fy for adult ben­e­fits or ser­vices if they live in the U.S. Many could be large­ly self-suf­fi­cient giv­en help around the house and a flex­i­ble work envi­ron­ment where there is assis­tance for man­ag­ing life’s logis­ti­cal details. Hav­ing great exec­u­tive func­tion­ing is less impor­tant giv­en a smart­phone and a good admin­is­tra­tive assis­tant. Being unable to dri­ve isn’t a prob­lem giv­en the mon­ey to use rideshar­ing or live in a dense, urban area. These are things many peo­ple get when they reach mid­dle- or upper-man­age­ment roles or rough­ly upper-mid­dle class sta­tus. This group needs the sup­ports to be more self-sup­port­ing, a chance to get a foot through the door. Some man­age to find envi­ron­ments where this is avail­able to them, but the bar­ri­ers in high­er edu­ca­tion and typ­i­cal, entry-lev­el jobs for peo­ple who strug­gle with orga­ni­za­tion, time man­age­ment, or deal­ing with liv­ing arrange­ments can prove insur­mount­able. Peo­ple who aren’t in envi­ron­ments that allow them to reach the point where they can pay for much of what they need try to scrape by unem­ployed, under­em­ployed, in jobs for which they’re overqual­i­fied. There are thou­sands of Autis­tic adults lean­ing on frag­ile net­works of for­mal and infor­mal sup­ports. Run­ning out of favors, an unten­able fam­i­ly sit­u­a­tion, or the end of an inti­mate rela­tion­ship can cre­ate a spi­ral of unmet sup­port needs that ends in home­less­ness. Peo­ple who are trapped in the gap of inter­me­di­ate sup­port needs also some­times just leave a world that has­n’t made room for them. They’re part of our com­mu­ni­ty’s high rate of ear­ly death, too. These peo­ple need that gap closed. They need ben­e­fits and sup­ports to ulti­mate­ly become most­ly self-sup­port­ing and finan­cial­ly secure.

These cat­e­gories have soft edges. Peo­ple move between them over the course of a life­time. They are mean­ing­ful even if they aren’t set in stone. They rep­re­sent dis­tinct prob­lems, inter­ests, and pri­or­i­ties. All three are present in the Autis­tic inter­net, but the peo­ple with the most sig­nif­i­cant impair­ments are prob­a­bly least rep­re­sent­ed. Not all of them, maybe not many of them, are giv­en access to com­put­ers and taught how to get online. The rest of us often say how much we care about the peo­ple who are non­ver­bal, who have chal­leng­ing behav­iors, who have intel­lec­tu­al dis­abil­i­ties, with whom we haven’t fig­ured out how to com­mu­ni­cate con­sis­tent­ly. We make a great show of uni­ty and sol­i­dar­i­ty when we insist on one label for the whole spec­trum. Now, we have to decide if that part of the sto­ry we’ve told togeth­er will become real.

If there is to be one wel­com­ing, inclu­sive Autis­tic peo­ple, Autis­tics in the U.S. who aren’t direct­ly affect­ed by Med­ic­aid and pover­ty ben­e­fits will still stand up for those things because some Autis­tics need them. We will rec­og­nize that some peo­ple who are part of our sto­ry will be insti­tu­tion­al­ized or die if these things are dis­man­tled, and we will pro­tect our neigh­bors as we would pro­tect our­selves. We will either act like one peo­ple and prove our will­ing­ness to pro­tect our vul­ner­a­ble or we will aban­don and mar­gin­al­ize our own and show the world that we don’t care near­ly as much about inclu­sion for all Autis­tics as we say. I don’t know which of those things we will decide to do, but I do know what I hope we can tell our grand­chil­dren about where this sto­ry goes.