Autistic Future

One of the great­est con­tri­bu­tions the dis­abil­i­ty com­mu­ni­ty and var­i­ous move­ments for dis­abil­i­ty rights and dis­abil­i­ty jus­tice make to the wider world is the asser­tion that every­one gets basic human rights, and there can be no com­pro­mise on that. That pre­cept is the best of who we are. At times, var­i­ous groups with­in our move­ments and com­mu­ni­ties have slipped up and made appalling argu­ments that they are more like than dif­fer­ent from nondis­abled peo­ple. Some­times, some of us are guilty of argu­ing “at least our minds/intellects/bodies… are fine” or accept­ing unac­cept­able behav­ior toward some dis­abled peo­ple on the basis of oth­er traits, like race or gen­der. At our best, how­ev­er, we have an unyield­ing way of demand­ing the full scope of human rights for every­one. That is who we must always strive to be, both because it’s right and because it’s the only way to ensure our own safe­ty and well being.

We don’t all need to be activists on every issue. Activism often works best when peo­ple dig into par­tic­u­lar issues, gain­ing knowl­edge, expe­ri­ence, and exper­tise, devel­op­ing deep con­nec­tions with the com­mu­ni­ties they serve. How­ev­er, we must always resist the temp­ta­tion to com­pare and con­trast, to treat human rights as zero sum, to throw some­one else under the bus in an effort to save our­selves or improve our own lot. The only kind of peo­ple we should­n’t accept in our work are those who don’t accept human rights as uni­ver­sal. This is both for moral rea­sons and because peo­ple who can’t accept that kind of basic ground rule have a long track record of ulti­mate­ly exclud­ing us from the cat­e­go­ry of peo­ple they believe deserve the full scope of human rights. There is no safe way for the dis­abil­i­ty com­mu­ni­ty to align itself with some­one who rejects some peo­ple’s human­i­ty. Some­one who has crossed that line once could do it again. It might be in regards to some­one else today, but the group being dehu­man­ized and scape­goat­ed could be ours tomor­row.

Prop­a­gat­ing the idea that human rights are for every­one, that no one is too impaired, or too any­thing, to deserve them, and that every­one is enti­tled to live in the world is one of the dis­abil­i­ty com­mu­ni­ties’ biggest con­tri­bu­tions to the wider world. Any of our lead­ers who buy into the lie that human rights are a zero-sum game and argue for the rights of dis­abled peo­ple or some group of dis­abled peo­ple above, rather than along side of, the rights of every­one else has bro­ken what should be the most basic ground rule of life in our com­mu­ni­ties. Any such con­duct by a dis­abil­i­ty com­mu­ni­ty leader should seri­ous­ly under­mine our con­fi­dence in that per­son­’s com­pe­tence to guide, pro­tect, and speak for peo­ple with dis­abil­i­ties. It should also under­mine our con­fi­dence in that per­son­’s moral char­ac­ter and wor­thi­ness to lead. Our com­mu­ni­ties will not sus­tain them­selves over time if we engage in can­cel cul­ture, refus­ing to let peo­ple make mis­takes, be account­able for their actions, and, ulti­mate­ly, learn and grow, but lead­ing us is not a right. It’s a priv­i­lege and a dif­fi­cult task, one for which not every­one is qual­i­fied.

The fact of the mat­ter is that peo­ple with dis­abil­i­ties are mar­gin­al­ized. We face exclu­sion and dis­crim­i­na­tion. Our expe­ri­ence teach­es us what mar­gin­al­iza­tion and dis­crim­i­na­tion are like, and the plainest les­son of those expe­ri­ences is not to treat any­one else that way. We must also reject every moral prin­ci­ple or eth­i­cal sys­tem that fails to grant every human being cer­tain basic rights uncon­di­tion­al­ly by neces­si­ty. If any­one is exclud­ed for rea­sons of iden­ti­ty, rather than con­duct, it’s a safe bet we will be, espe­cial­ly peo­ple whose dis­abil­i­ties relate to cog­ni­tion or men­tal health. Our moral intu­ition at its best and our self-inter­est both align with inter­sec­tion­al­i­ty. This prin­ci­ple is so fun­da­men­tal to our safe­ty and abil­i­ty to thrive that we can­not accept any­one who fails to under­stand it as a leader.

It’s hard to think long-term when short-term sur­vival does­n’t seem guar­an­teed, when imme­di­ate con­cerns are vast, press­ing, exis­ten­tial, maybe insur­mount­able. It’s hard to get long-term needs and inter­ests addressed when one’s auton­o­my is lim­it­ed even in the short-term, even in the small­est deci­sions. Most Autis­tics in the U.S. and around the world are famil­iar with the kind of think­ing peo­ple do in des­per­ate places. Most of us have been there. It’s the only life too many of us know. Cou­ple that with ongo­ing, pub­lic ableism among envi­ron­men­tal advo­cates, and it isn’t hard to see why the Autis­tic com­mu­ni­ty’s engage­ment with cli­mate change has been lim­it­ed.* We must change that to the great­est extent we can under the lim­i­ta­tions of our cir­cum­stances. Our sur­vival and well-being, and that of oth­er peo­ple with dis­abil­i­ties around the world, depends on it.

The strong sci­en­tif­ic con­sen­sus is that cli­mate change is real. Worse, it isn’t a prob­lem we can expect to face in the future. It’s a cur­rent prob­lem expect­ed to get worse in the future. Experts are rec­om­mend­ing some steps indi­vid­u­als can take to reduce their con­tri­bu­tions to cli­mate change, but most say that indi­vid­ual action isn’t enough. It will take sys­temic efforts by gov­ern­ments and large com­pa­nies to solve the prob­lem. To that end, Autis­tics and the wider dis­abil­i­ty com­mu­ni­ty must become more assertive about cli­mate change. For us, even more than for oth­ers, cli­mate change is an exis­ten­tial threat. This is a mat­ter of life and death.

Pre­dic­tions about the con­se­quences of cli­mate change for human­i­ty are get­ting increas­ing­ly dire. They include things like more unsta­ble food sup­plies, social unrest and oth­er threats to the rule of law, more and worse nat­ur­al dis­as­ters, increased pover­ty, and more suf­fer­ing and lack of access to basic neces­si­ties among the world’s poor. If those things come to pass, dis­abled peo­ple will bear the brunt of them. We will suf­fer and die, because we are dis­pro­por­tion­ate­ly the poor­est peo­ple in our soci­eties, where sta­ple foods and potable water get scarcer. We will suf­fer and die in soci­eties where cli­mate changed dri­ves scarci­ty and result­ing unrest, mak­ing per­son­al care assis­tance, dis­abil­i­ty ben­e­fits, med­ical care, elec­tric­i­ty, and effec­tive legal sys­tems that pro­tect our rights less reli­ably avail­able. We will suf­fer and die where nat­ur­al dis­as­ters become worse and more fre­quent in larg­er num­bers than our nondis­abled peers because we always do. Where areas become unin­hab­it­able, dis­abled peo­ple, more than oth­ers, will be left behind.

The pre­dic­tions all amount to a more unsta­ble world. Indi­vid­ual mileage will vary, but dis­abil­i­ty com­mu­ni­ties on the whole thrive on sta­bil­i­ty. Too many of us are strug­gling, even in rich coun­tries with statu­to­ry pro­tec­tions for our rights, in a world as peace­ful and pros­per­ous as it’s ever been in human his­to­ry. We can’t afford a world as harsh as the one fore­cast in even mid­dle-of-the-road cli­mate change pre­dic­tions. The futures imag­ined in dis­cus­sions of the worst case sce­nar­ios are sim­ply not sur­viv­able for most of us. Some of the most vul­ner­a­ble peo­ple with dis­abil­i­ties, peo­ple liv­ing in poor coun­tries and those who are also elder­ly, iso­lat­ed, or poor in the U.S., are already suf­fer­ing from the effects of cli­mate change. If we aren’t hear­ing from peo­ple who are already feel­ing its effects, it’s because they are so mar­gin­al­ized that they may not even be con­nect­ed to or aware of dis­abil­i­ty com­mu­ni­ty. If we don’t acknowl­edge that the changes we’re see­ing will cause prob­lems for more and more of us in the years to come, we’re lying to our­selves.

What we can do to address this press­ing issue is lim­it­ed by our cir­cum­stances. Pover­ty and func­tion­al lim­i­ta­tions will make some per­son­al actions and lifestyle changes impos­si­ble for some dis­abled peo­ple. It won’t be easy for Autis­tics and oth­er dis­abled peo­ple to devote some of our own and our com­mu­ni­ties’ finite resources to address­ing this issue. It’s going to be painful. That much is cer­tain. That said, it’s time to start ask­ing our­selves what we, indi­vid­u­al­ly and col­lec­tive­ly, can do to address a grow­ing cri­sis. Tak­ing this issue on will be cost­ly, but ignor­ing it is con­sign­ing many peo­ple like our­selves, some alive today, some to be born in the years and decades to come, to mis­ery. That is not an accept­able out­come.

Peo­ple with dis­abil­i­ties in Amer­i­ca are increas­ing­ly well-orga­nized. In recent years, we’ve had a good track record of fac­ing down exis­ten­tial threats and defeat­ing them. We are used to being cre­ative and resource­ful. We are prac­ticed at fight­ing for our lives. Autis­tics are par­tic­u­lar­ly vocif­er­ous advo­cates when con­front­ed with an exter­nal threat. Usu­al­ly, noth­ing less than an exis­ten­tial threat is enough to get our var­i­ous fac­tions to work togeth­er. Now, those are the stakes. It’s easy to lose sight of cli­mate change among the many issues we have to address. There are so many mat­ters of life and death, and some feel more con­crete and immi­nent. How­ev­er, none will affect as many of us as cli­mate change if it’s left unchecked. The dis­as­ter may be unfold­ing slow­ly, but it is already in progress. This isn’t tomor­row’s dan­ger. It’s today’s. As stew­ards of our com­mu­ni­ty’s present and future, we must try to find ways peo­ple with dis­abil­i­ties can help avoid the worst case sce­nar­ios for cli­mate change. We must take deci­sive action to pro­tect our own and pre­serve our place in the human com­mu­ni­ty for gen­er­a­tions to come.

*Gre­ta Thun­berg may be a pio­neer­ing excep­tion, but the extent of her engage­ment with Autis­tic com­mu­ni­ty is unclear.

Autis­tic adults will­ing to dis­cuss autism in pub­lic or work on autism issues get many requests for help and advice. There is noth­ing inher­ent­ly wrong with ask­ing peo­ple for help, but the type and amount of these requests can get grat­ing over time. Neu­rotyp­i­cals who want respect­ful, mutu­al­ly agree­able, pro­duc­tive rela­tion­ships with Autis­tic advo­cates and activists, and want to max­i­mize the num­ber of their requests that are grant­ed, need to learn to make them in the right way. Most of the con­flicts that come out of these requests could be avoid­ed if neu­rotyp­i­cals could apply the Gold­en Rule to Autis­tic adults, extend a lit­tle empa­thy, and refrain from treat­ing Autis­tic adults in ways they, them­selves, would like­ly find obnox­ious. That plus a very basic lev­el of cul­tur­al com­pe­ten­cy would pre­vent almost all such prob­lems. Since a num­ber of neu­rotyp­i­cals are find­ing it chal­leng­ing to do those things, here are some guide­lines:

The most basic way to avoid annoy­ing or offend­ing some­one with a request for help or advice is to pre­sume Autis­tic adults’ per­son­hood and act accord­ing to the Gold­en Rule. Assume that peo­ple have full, rich lives and that their time is valu­able. Don’t assume that a dis­abled per­son does­n’t work or that a per­son who does­n’t work a tra­di­tion­al, full-time job isn’t busy and active in var­i­ous pur­suits. Under­stand that ful­fill­ing your request, should the Autis­tic adult choose to do it, will take time. This is a real cost. If you can answer a ques­tion through Google, it might be more respect­ful to do that than ask for some­one’s time, espe­cial­ly if that per­son is some­one you don’t know well. Nev­er ask an Autis­tic or oth­er dis­abled per­son to work for free when you would expect to pay a neu­rotyp­i­cal to get the job done. This insults the dis­abled per­son by devalu­ing their work and per­pet­u­ates pover­ty in the dis­abil­i­ty com­mu­ni­ty. Peo­ple will prob­a­bly, under­stand­ably, respond to requests of this kind with out­rage. Ask­ing peo­ple with dis­abil­i­ties to vol­un­teer when any­one in the role in ques­tion would be a vol­un­teer is fine.

Con­sid­er, too, whether your request is cost­ly or offen­sive by nature. If you are con­sid­er­ing ask­ing a ques­tion, first ask your­self whether you would be com­fort­able answer­ing it giv­en the sur­round­ing con­text and degree of rela­tion­ship. Ask­ing an Autis­tic stranger about the details of their med­ical or sex­u­al his­to­ry is no more like­ly to go over well than ask­ing those sorts of ques­tions of a neu­rotyp­i­cal you don’t know well. Be care­ful about how you ask about the painful moments of peo­ple’s per­son­al his­to­ries, too. Con­sid­er the cost of hav­ing to repeat the sto­ry of the worst moments of your life over and over. Is the rea­son for your request worth ask­ing anoth­er per­son to do that? Nav­i­gat­ing these sit­u­a­tions will be eas­i­er to get this right if you rec­og­nize Autis­tic adults as peo­ple who are fun­da­men­tal­ly like your­self in many ways.

Cul­tur­al com­pe­tence and research on indi­vid­u­als will also help you avoid offend­ing the peo­ple you hope will help you. Do you want some­thing from some­one who iden­ti­fies with the Neu­ro­di­ver­si­ty Move­ment? Approach­ing them with the phrase “per­son with autism” and ask­ing for help with an autism aware­ness month event will prob­a­bly not go over well. Learn­ing the Autis­tic com­mu­ni­ty’s major­i­ty con­sen­sus on basic issues, and some­thing about the pref­er­ences and val­ues of the indi­vid­ual you plan to ask for help, will usu­al­ly give you an under­stand­ing of which requests are like­ly to be accept­ed and which ones just invite anger. Peo­ple will not help you if your requests don’t align with their inter­ests, knowl­edge, or pri­or­i­ties. Ask­ing some­one to help with a project that is dia­met­ri­cal­ly opposed to their val­ues will usu­al­ly be con­sid­ered annoy­ing at best, deeply offen­sive at worst. If you know so lit­tle about the per­son you are ask­ing that you have no idea how your request will land, you may want to do more research before you pose the ques­tion.

For all their sup­posed empa­thy and good social skills, too many neu­rotyp­i­cals have dif­fi­cul­ty apply­ing those things to their inter­ac­tions with Autis­tic peo­ple. Remem­ber­ing that Autis­tics are peo­ple, with all the com­plex­i­ty that entails, will go a long way toward solv­ing the prob­lem. Insult­ing the Autis­tic adults with whom you inter­act is an inher­ent­ly obnox­ious thing to do, and it isn’t pro­duc­tive. It will nev­er help you get what you want. If this is seems con­fus­ing or too hard to do, there may be work you need to do on your­self before you can inter­act with the Autis­tic com­mu­ni­ty suc­cess­ful­ly.

Straw man argu­ments against neu­ro­di­ver­si­ty are back in style like some ter­ri­ble ’90s fash­ion trend returned from the thrift store sale bins. Once again, some peo­ple are try­ing to tell the “hard truth” that neu­ro­di­ver­si­ty does­n’t and can’t work. It isn’t clear which of these indi­vid­u­als real­ly believe what they say and who is just tak­ing an “edgy” brand­ing tack, but what is obvi­ous is that they aren’t engag­ing in the kind of good faith debate that makes ideas stronger through the pres­sure and account­abil­i­ty of an oppos­ing point of view. They’re set­ting up straw men, mis­rep­re­sent­ing what neu­ro­di­ver­si­ty is and knock­ing it down. This is a prob­lem for any­one who iden­ti­fies with the ideals of the Neu­ro­di­ver­si­ty Move­ment because peo­ple who are new to autism, dis­abil­i­ty, or neu­ro­di­ver­si­ty issues may not buy into its agen­da if their first encounter with what it osten­si­bly means is one of these straw man expla­na­tions. Pro­po­nents of neu­ro­di­ver­si­ty have pushed back, but so much of that con­ver­sa­tion is inevitably about what neu­ro­di­ver­si­ty isn’t. While stand­ing up to peo­ple who mis­rep­re­sent neu­ro­di­ver­si­ty is impor­tant, we can’t expect any­one to buy into what our ide­ol­o­gy isn’t. It’s also impor­tant to reit­er­ate what neu­ro­di­ver­si­ty actu­al­ly means.

Neu­ro­di­ver­si­ty starts by assum­ing that liv­ing human beings are per­sons. Every­one gets the same basic rights. Every­one can be assumed to have the range of human needs and desires, for things like belong­ing and auton­o­my, that are prac­ti­cal­ly uni­ver­sal unless the indi­vid­ual in ques­tion specif­i­cal­ly says oth­er­wise. There are no excep­tions for label, IQ, or degree of sup­port needs. It moves on prag­mat­i­cal­ly from there. For the time being, there is no “cure” for most neu­ro­log­i­cal dif­fer­ences that are far enough from the norm to be char­ac­ter­ized as dis­abil­i­ties. Some Autis­tics, oth­er dis­abled peo­ple, par­ents, sib­lings, care­givers, and pro­fes­sion­als are hap­py that there isn’t a way to pre­vent most neu­ro­log­i­cal dif­fer­ences or nor­mal­ize most neu­ro­di­ver­gent peo­ple. Oth­ers aren’t. The aver­age neu­ro­di­ver­si­ty pro­po­nent is opposed to a cure and wor­ried about soci­ety’s eugenic ten­den­cies, but hav­ing a spe­cif­ic sense of what an ide­al world would look like isn’t nec­es­sar­i­ly a pre­req­ui­site for find­ing neu­ro­di­ver­si­ty use­ful. The cru­cial thing is accept­ing that peo­ple are peo­ple, and, love it, hate it, or feel ambiva­lent about it, there is no cure today.

Make the val­ue judge­ment that we should err on the side of treat­ing every human being as a per­son, accept the fact that med­i­cine does­n’t have an answer to neu­ro­log­i­cal vari­ety, and ques­tions about how to help peo­ple with sig­nif­i­cant sup­port needs exer­cise their rights and get the things prac­ti­cal­ly every­one wants inevitably feel urgent. Neu­ro­di­ver­si­ty isn’t an idea whose use­ful­ness is lim­it­ed to peo­ple who are “high func­tion­ing” or “just quirky” because it inher­ent­ly looks at peo­ple who will have exten­sive, expen­sive sup­port needs for the fore­see­able future and asks how we can help these peo­ple build the best pos­si­ble lives for them­selves. Neu­ro­di­ver­si­ty looks to every idea, tool, and prac­ti­cal solu­tion it can lay hands on to answer the ques­tion of how to have a good life with an IQ of 30, exec­u­tive func­tion­ing dif­fi­cul­ties, schiz­o­phre­nia, no ver­bal speech, or all of the above. Where med­i­cine is stumped, and the peo­ple affect­ed may not even want a “cure,” neu­ro­di­ver­si­ty draws heav­i­ly on the social mod­el of dis­abil­i­ty to offer some­thing unique: hope.

Start ask­ing ques­tions about how to help peo­ple with sig­nif­i­cant dis­abil­i­ties who are alive today live well and it becomes hard to watch a dis­pro­por­tion­ate share of the research dol­lars going to med­ical mod­el solu­tions while the sup­ports that make for good lives are under­fund­ed. Spend­ing mil­lions of dol­lars try­ing to fig­ure out how to nor­mal­ize dis­abled peo­ple starts to seem sil­ly as soon as one gets to know some peo­ple with extreme­ly sig­nif­i­cant sup­port needs and ade­quate sup­ports. Meet­ing some­one whose sup­port needs and day-to-day qual­i­ty of life both exceed one’s own demon­strates that the idea that degree of impair­ment deter­mines qual­i­ty of life is just an ableist assump­tion. Meet some­one whose qual­i­ty of life is mis­er­able because ade­quate sup­ports aren’t avail­able, and the present bal­ance of research fund­ing starts to feel like a moral out­rage.

Neu­ro­di­ver­si­ty isn’t a feel-good con­cept for suc­cess­ful peo­ple who are “a lit­tle dif­fer­ent” but doing fine. It’s the courage to enter­tain the idea that peo­ple with sig­nif­i­cant dis­abil­i­ties can have lives worth liv­ing and embrace that idea’s excru­ci­at­ing impli­ca­tions for what lives wast­ed by fil­i­cide, insti­tu­tion­al­iza­tion, oth­er forms of seg­re­gat­ed, con­gre­gate set­tings, and even low expec­ta­tions and learned help­less­ness in the com­mu­ni­ty might have been. It’s liv­ing with the knowl­edge that human lives are being wast­ed that way now. Neu­ro­di­ver­si­ty is an idea for strong peo­ple, as it bites and claws at every­one who embraces it. There is no way to imag­ine a bet­ter world with­out con­fronting how bad things are and have been. The ensu­ing sense of out­rage rou­tine­ly changes the course of peo­ple’s lives.

For many of neu­ro­di­ver­si­ty’s con­ven­tion­al­ly suc­cess­ful, Autis­tic adher­ents, it brings about a com­mit­ment to help­ing fel­low Autis­tics achieve joy­ful, use­ful, self-direct­ed, inter­est­ing lives and expe­ri­ence the same rich vari­ety of options avail­able to nondis­abled peo­ple. Neu­ro­di­ver­si­ty’s end goal is good lives in all the infi­nite vari­ety of what that means. It isn’t an easy self-esteem boost or an affin­i­ty club for edu­cat­ed pro­fes­sion­als who are “just quirky.” It’s a robust sup­port­ed deci­sion-mak­ing agree­ment, Autis­tic friends with com­pli­men­ta­ry strengths and weak­ness­es help­ing each oth­er, a per­son with ID demand­ing a home that pass­es the bur­ri­to test, fund­ing for more and bet­ter AAC, com­pre­hen­sive and acces­si­ble sex edu­ca­tion, sup­port staff who facil­i­tate peo­ple with I/DD main­tain­ing mean­ing­ful rela­tion­ships over time and dis­tance, an Autis­tic pride stick­er on a sports car, an SLP who helps rude teenagers learn how to cuss. Neu­ro­di­ver­si­ty is insist­ing that peo­ple with dis­abil­i­ties affect­ing the mind deserve more than the dull, small lives they have been giv­en in the past, that a lifestyle no one with real options would ever accept isn’t good enough for any­one. It’s accept­ing the hard real­i­ty that none of us will ever be secure in our free­dom or safe­ty until the most vul­ner­a­ble mem­bers of soci­ety are, too.