Autistic Future

The word ‘neu­ro­di­ver­si­ty’ has come a long way. What start­ed as a fringe term has gone main­stream. What was a sig­ni­fi­er of rad­i­cal ideas has become a buzz­word. The word, and many of the con­cepts that sur­round it, are get­ting watered down by peo­ple who use it with­out mean­ing what it used to mean: a fierce, unyield­ing com­mit­ment to the idea that every­one gets cer­tain things: equal­i­ty under law, dig­ni­ty of risk, self-deter­mi­na­tion, and real oppor­tu­ni­ties to build a life worth liv­ing. It meant build­ing rich, diverse coali­tions with many dif­fer­ent peo­ple to meet our com­mu­ni­ty’s needs but nev­er rely­ing on any­one who won’t agree to our full human­i­ty as a basic ground rule of work­ing togeth­er. One of the upsides of our grow­ing vis­i­bil­i­ty is a con­stant flow of new peo­ple into the com­mu­ni­ty. With the def­i­n­i­tion of some of the words many of us used to state our col­lec­tive iden­ti­ty loos­en­ing, we need to talk more about the things at the heart of Autis­tic cul­ture and com­mu­ni­ty so that new peo­ple find out what it all means. One such con­cept, one we real­ly can’t afford to lose, is mutu­al support.

Peo­ple in the Autis­tic com­mu­ni­ty have his­tor­i­cal­ly been good about help­ing each oth­er. In some ways, the com­mu­ni­ty runs on the con­stant flow of advice, emo­tion­al sup­port, leads on gigs or jobs, and, some­times, prac­ti­cal and finan­cial sup­port we give each oth­er. New peo­ple see their peers try­ing to be help­ful to each oth­er and often want to get involved. This impulse is to be nur­tured and encour­aged because it has the poten­tial to make life bet­ter for us all, but the urge to help has pit­falls, espe­cial­ly for peo­ple who are new to advo­ca­cy. They stum­ble into vol­un­teer­ing or even work­ing for orga­ni­za­tions that exploit them, sup­port­ing projects that per­pet­u­ate the exclu­sion of peo­ple with dis­abil­i­ties from main­stream soci­ety, doing a lot of pub­lic speak­ing and writ­ing before they have set­tled into their own opin­ions, and oth­er­wise caus­ing prob­lems for them­selves and oth­ers. The best way to empow­er new peo­ple to avoid these pit­falls is by giv­ing them good infor­ma­tion. For that rea­son, it is impor­tant to define the kind of mutu­al sup­port we have had in the past and pro­tect its mean­ing from being watered down or co-opted.

Real sup­port for fel­low Autis­tic peo­ple fol­lows neu­ro­di­ver­si­ty idea that no one is too impaired to belong, and peo­ple with dis­abil­i­ties’ right­ful place is in their com­mu­ni­ties. Activ­i­ties that pro­mote peo­ple with dis­abil­i­ties being inte­grat­ed or vol­un­tar­i­ly spend­ing time togeth­er serve this aim. Try­ing to “help” by prop­ping up seg­re­gat­ed set­tings isn’t actu­al­ly help­ful. Seg­re­gat­ed set­tings are usu­al­ly not what those of us whose min­i­mal sup­port needs or ade­quate sup­ports give us real choic­es choose. If it isn’t good enough for those of us with options, it isn’t good enough for any­one. If some­one would enjoy a par­tic­u­lar activ­i­ty or wants to be more engaged with dai­ly life, get cre­ative. Get demand­ing. Help by try­ing to get that per­son sup­port­ed and includ­ed, not by cre­at­ing a sep­a­rate and unequal alternative.

Mutu­al sup­port must also take a wel­com­ing view of who belongs in the Autis­tic com­mu­ni­ty. We will exclude some Autis­tics unless we pay atten­tion to inter­sec­tion­al­i­ty. Some­times, this will involve sup­port­ing oth­er Autis­tic peo­ple who are chal­leng­ing forms of dis­crim­i­na­tion you may not have expe­ri­enced or work­ing with peo­ple who may not work, speak, or pray like you to get things done. If you lis­ten to what Autis­tics of dif­fer­ent back­grounds say about their lives and the prob­lems they face, your efforts to help oth­ers will be more effec­tive. You will be less like­ly to acci­den­tal­ly leave peo­ple out. It is also impor­tant to respect diver­si­ty of opin­ion. Autis­tic peo­ple come from a vari­ety of back­grounds. Some have more access to or abil­i­ty to pick up the lat­est in social jus­tice ter­mi­nol­o­gy than oth­ers. Not every­one will always agree, and not every­one will always use the right words. We can dif­fer on a lot of things and still help each oth­er, sup­port each oth­er, and enjoy each oth­er’s com­pa­ny so long as we can all fol­low that rule about rec­og­niz­ing each oth­er’s com­mon human­i­ty and act­ing accord­ing­ly. Some­one who engages in vio­lence, harass­ment, theft, or abuse of pow­er or clear­ly believes only some peo­ple are ful­ly human may some­times have to be exclud­ed for the well-being of oth­ers. Every­one else belongs, no excep­tions. Mutu­al sup­port that devi­ates from this prin­ci­ple weak­ens the bonds of our com­mu­ni­ty and risks reduc­ing it to an echo chamber.

Pru­dence is anoth­er impor­tant part of our prac­tice of mutu­al sup­port. It is impor­tant to con­sid­er your own abil­i­ty to give. Send­ing mon­ey to your friend who needs help pay­ing util­i­ty bills is great unless it will keep you from cov­er­ing your own rent. Risks and sac­ri­fices should be care­ful­ly con­sid­ered. By the same token, agree­ing to do or help with some­thing that requires spe­cial skills, knowl­edge, cre­den­tials, or exper­tise when you don’t have those things is not use­ful. Con­sid­er what you have in abun­dance, whether it’s mon­ey, time, exper­tise, or a par­tic­u­lar skill. Remem­ber that just being open­ly Autis­tic is a gift to our com­mu­ni­ty because the vis­i­bil­i­ty reduces stig­ma. Try not to give to the point of adding your­self to the large group of peo­ple in need. Your time and resources are yours to use, so you can always decline any indi­vid­ual request. You are nev­er oblig­at­ed to explain your ‘no.’ That said, com­mu­ni­ty means some degree of mutu­al pro­tec­tion and assis­tance. We oper­ate on the assump­tion that things will work bet­ter if we all chip in what we can, so it is impor­tant to be inten­tion­al about giv­ing more as one’s abil­i­ty to give increases.

If we can main­tain a social norm of mutu­al sup­port that is inclu­sive, com­pas­sion­ate, inter­sec­tion­al, and thought­ful as our com­mu­ni­ty grows, more peo­ple with the autism label will see val­ue in the com­mu­ni­ty and want to engage with it and iden­ti­fy as Autis­tic. The new­com­ers will, in turn, make the com­mu­ni­ty stronger and more valu­able to its mem­bers by engag­ing in mutu­al sup­port. If we for­get this, if we let mutu­al sup­port become watered down, the qual­i­ty of our com­mu­ni­ty will decay. More need will go unmet. Younger Autis­tic peo­ple may not see the point of engag­ing with the com­mu­ni­ty. Its num­bers and strength may dimin­ish. If that hap­pens, more will be said and done about us with­out us because we will not be as able to mount an orga­nized response. Work­ing togeth­er is help­ing to secure our future. To have a future, we must con­tin­ue to prac­tice mutu­al sup­port and get it right.