Autistic Future
August 10th, 2017

Solidarity and Self-Determination

A set of handcuffs opens and falls off of one of a person's outstretched wrists.

What we want comes with responsibility.


Autis­tic peo­ple wide­ly agree that we’re bet­ter-equipped to solve our prob­lems than any­one else. Giv­en a say in what sci­ence gets fund­ed and what the orga­ni­za­tions with the biggest bud­gets do, we believe, we could tack­le many of the most seri­ous prob­lems fac­ing our com­mu­ni­ty. We demand our place in estab­lish­ing the dis­abil­i­ty pol­i­cy agen­da, insist­ing that pri­mar­i­ly par­ent-run orga­ni­za­tions should not make every deci­sion about which issues take pri­or­i­ty. Unfor­tu­nate­ly, our behav­ior does­n’t always match this stat­ed posi­tion. We demand a place at the table and then don’t always show up in the num­bers we should for cru­cial issues like pro­tect­ing Medicaid.

Peo­ple at the heart of the Neu­ro­di­ver­si­ty Move­ment, the kinds of peo­ple who have dis­abil­i­ty-relat­ed pro­fes­sion­al posi­tions and may have work or vol­un­teer his­to­ries with orga­ni­za­tions like ASAN, do engage in pan-dis­abil­i­ty activism. Pre­dictably, they wrote, spoke, protest­ed, and raised funds for arrest­ed mem­bers of ADAPT when Med­ic­aid dol­lars, the lifeblood of com­mu­ni­ty liv­ing in the Unit­ed States, were on the line.

Too many oth­er Autis­tic adults were curi­ous­ly silent. That kind of fail­ure to act is risky. It threat­ens both what­ev­er is on the line in the moment, our move­ment and com­mu­ni­ty’s rep­u­ta­tions, and our chances of a seat at the table. If we let par­ents and oth­er seg­ments of the dis­abil­i­ty com­mu­ni­ty do the heavy lift­ing, we will not be tak­en as seri­ous­ly as we hope to be.

The mut­ed response to a threat to Med­ic­aid was dis­turb­ing. The issue got round-the-clock atten­tion from the most seri­ous core of neu­ro­di­ver­si­ty activists, but ordi­nary Autis­tics did not seem to engage with the issue as much as one would hope. The apoc­a­lyp­tic con­se­quences of cuts to Med­ic­aid did­n’t get the atten­tion or inspire the out­rage that bad behav­ior by Autism Speaks or tact­less con­fer­ence pro­gram­ming do. That may say some­thing wor­ri­some about the com­mu­ni­ty’s pri­or­i­ties, but there may be good rea­sons for that.



We may have strug­gled to get Autis­tic peo­ple to engage with health­care issues because there are real divides in the Autis­tic pop­u­la­tion. Autis­tic inter­net-cul­ture skews toward low­er-sup­port peo­ple. That tends to be who can find a device and a con­nec­tion and who is per­mit­ted to learn how to use them to enter the worlds we’ve cre­at­ed togeth­er. Autism with­out an intel­lec­tu­al dis­abil­i­ty has­n’t his­tor­i­cal­ly fit the bill for many Med­ic­aid-fund­ed ser­vices, so the pro­gram may not be per­son­al­ly rel­e­vant or famil­iar to many peo­ple in Autis­tic inter­net culture.

Increased diag­no­sis and self-iden­ti­fi­ca­tion has led to big influx­es of new peo­ple in many Autis­tic inter­net spaces. This is large­ly a good thing, but it comes with chal­lenges. It’s hard to teach these vast groups of peo­ple about the needs of Autis­tics very dif­fer­ent from them­selves, and our cul­tur­al pre­cept that there is one spec­trum, and we’re all our sib­lings’ keep­ers, as fast as they come in. Health­care pol­i­cy presents a par­tic­u­lar­ly hard set of issues to explain.  The prob­lems, pro­grams, and solu­tions are abstract and full of jargon.

That said, if we want to remain a com­mu­ni­ty for all Autis­tic peo­ple, ready to wel­come and pro­tect high- and low-sup­port alike, we have to care about the issues affect­ing high­er-sup­port per­sons. We have to teach new­com­ers to care about those issues and under­stand the basics, enough to know when it’s impor­tant to take action. We have to tell those sto­ries in com­pelling ways that make them part of our shared sto­ry. Lead­ers have to com­mit to telling bet­ter sto­ries. Ordi­nary peo­ple, if they want to live in an Autis­tic com­mu­ni­ty that real­ly belongs to all of us, have to lis­ten and learn.

If we don’t incul­cate new peo­ple with the impor­tance of stand­ing up for high­er-sup­port dis­abled peo­ple, if we can’t show them their place in the wider world of pan-dis­abil­i­ty issues, we risk los­ing our way. If ordi­nary Autis­tics don’t know about the most sig­nif­i­cant dis­abil­i­ty issues of our times, we risk devolv­ing from seri­ous move­ment into iso­lat­ed sub­cul­ture. If we only speak for peo­ple who can com­mu­ni­cate with words and access the inter­net, we aren’t like­ly to get a seat at the table when seri­ous advo­cates and orga­ni­za­tions are mak­ing seri­ous pol­i­cy decisions.

Of course, we should be the pri­ma­ry deci­sion-mak­ers about our own lives, our prob­lems, the things that are pri­mar­i­ly going to affect us. How­ev­er, the real­i­ty is that peo­ple who rarely show up even­tu­al­ly stop receiv­ing invi­ta­tions. If we want to be tak­en seri­ous­ly by the major dis­abled- and par­ent-run orga­ni­za­tions, we have to show up. If we want to be in charge of the agen­da for our future, we have to shake off leaned help­less­ness and do the work.



Free­dom, a self-deter­mined life, is an insep­a­ra­bly entan­gled clus­ter of rights and respon­si­bil­i­ties. Those things are, inevitably, two sides of the same coin. If we want “noth­ing about us with­out us[,]” we have to attend dis­cus­sions that are about us. Our lead­ers are doing an admirable job, but they can’t do it alone. Ulti­mate­ly, noth­ing gets done unless some­one does it. If we want free­dom, if we want a say in what our future holds, we have to shoul­der the bur­den of par­tic­i­pat­ing in those strug­gles and deci­sions. Oth­er­wise, oth­ers will con­tin­ue to do it for us.