Autistic Future
October 21st, 2016

The Future Of Autism Speaks

Autism Speaks’ recent deci­sion to drop lan­guage about a cure from its mis­sion state­ment could be self-serv­ing. A cure is med­ical­ly unlike­ly, wide­ly reject­ed by Autis­tic advo­cates, and increas­ing­ly behind the pol­i­cy nar­ra­tive of what autism is and what to do about it. That makes it easy to read this sit­u­a­tion as less altru­ism than a des­per­ate attempt to cling to rel­e­vance. How­ev­er, an act does­n’t need to be well-moti­vat­ed to have good con­se­quences. This is an oppor­tu­ni­ty for Autism Speaks to drop its posi­tion as the lead­ing pro­mot­er of eugen­ics in Amer­i­ca today and join the oth­er major intel­lec­tu­al and devel­op­men­tal dis­abil­i­ty orga­ni­za­tions in doing the hard work of inclu­sion and civ­il rights. If Autism Speaks makes real, sub­stan­tive changes to how it oper­ates and what it funds, it will imme­di­ate­ly find itself oper­at­ing in the realm of con­ven­tion­al dis­abil­i­ty non­prof­its, which is vast­ly dif­fer­ent from its cur­rent milieu. It would behoove the rest of the autism com­mu­ni­ty to wel­come the orga­ni­za­tion into the fold with open arms if it sur­vives the shock of a change that would be drastic.

The fundrais­ing chal­lenges would hit hard and fast. Peo­ple like to fund one-time solu­tions much more than ongo­ing main­te­nance. If Autism Speaks choos­es to become a more use­ful dis­abil­i­ty orga­ni­za­tion, it will inevitably col­lide with that real­i­ty. Dis­abil­i­ty does­n’t go away. Dis­abil­i­ty sup­ports are thus, by def­i­n­i­tion, long-term issues. They are not fin­ished after one round of fund­ing, and this can make it chal­leng­ing to fund them at all. Prob­lem-solv­ing, tak­ing care of the mat­ter once and for all, lends itself well to glossy adver­tis­ing, aware­ness cam­paigns, and groundswells of pub­lic sup­port. Cam­paigns for long-term solu­tions are more com­plex. They tend to take longer than a tweet or a slo­gan to explain. They strug­gle with run­ning up against resent­ment or grad­u­al­ly dying from the pub­lic’s apa­thy. There is noth­ing less sexy than sus­tain­able, long-term sup­ports for needs that are not going away in the fore­see­able future. If Autism Speaks changes, it will like­ly find its fundrais­ing efforts irrev­o­ca­bly altered and sig­nif­i­cant­ly more challenging.

The orga­ni­za­tion will also have to come up with safe ways of deal­ing with its fol­low­ing. If there is any gen­uine will to change in its cur­rent lead­er­ship, it will have to nav­i­gate the dilem­ma it cre­at­ed. By cat­a­stro­phiz­ing for years about a dis­abil­i­ty that is prob­a­bly noth­ing new and asso­ci­at­ing with, or at least notably fail­ing to dis­tance itself from, such dis­rep­utable char­ac­ters as anti­vaax­ers and the JRC, it has attract­ed a mem­ber­ship that includes both ordi­nary fam­i­lies try­ing to do right by their chil­dren and extrem­ist, fringe ele­ments. If Autism Speaks changes so fast that peo­ple who, for instance, use dan­ger­ous, quack med­ical treat­ments on their chil­dren break off from the orga­ni­za­tion, vul­ner­a­ble peo­ple could become the schis­m’s col­lat­er­al dam­age. Chil­dren and vul­ner­a­ble adults might suf­fer seri­ous harm if fam­i­lies with such irre­spon­si­ble care­givers become more iso­lat­ed from peo­ple who could serve as mod­er­at­ing influ­ences or con­tact the author­i­ties. How­ev­er, if the lead­er­ship fails to push for change hard and fast enough, any exist­ing chance at a clean slate with peo­ple who sub­scribe to the neu­ro­di­ver­si­ty par­a­digm will quick­ly dis­si­pate. If Autism Speaks wants this shift to move it toward cred­i­bil­i­ty with Autis­tic advo­cates and oth­ers who want peo­ple with dis­abil­i­ties accept­ed, it has to con­tin­ue tak­ing notice­able steps in the right direction.

If this change evi­dences good inten­tions among the new lead­er­ship, the inclu­sion-mind­ed peo­ple with­in the orga­ni­za­tion are in an unen­vi­able posi­tion.  It isn’t clear that they can both enact a mean­ing­ful tran­si­tion and hold the orga­ni­za­tion togeth­er. How­ev­er, it’s hard not to hope that this is more than brand­ing. There may be poten­tial for Autism Speaks to take on a new iden­ti­ty. Maybe “solu­tions” could include assis­tive tech­nol­o­gy research, devel­op­ment, and fund­ing. Whether this is moti­vat­ed by the hope of doing good or the desire to avoid obso­les­cence, more peo­ple with exper­tise in fundrais­ing, grant-writ­ing, and adver­tis­ing on the side of full inclu­sion can nev­er be a bad thing. If Autism Speaks changes gen­uine­ly, and fast enough to make this state­ment mean some­thing, peo­ple who want to see a greater real­iza­tion of dis­abil­i­ty rights and dis­abil­i­ty jus­tice would be unwise to turn up their noses at it. This move­ment has enough work to do and ground to cov­er that there are plen­ty of tasks for every will­ing set of hands.