Autistic Future
June 21st, 2017

Are We Giving Parents Bad Advice?

Autis­tic adults often tell the neu­rotyp­i­cal par­ents of Autis­tic chil­dren to lis­ten to us. This advice is fre­quent­ly repeat­ed, and it’s such a fix­ture of dis­course in our com­mu­ni­ty that it isn’t often exam­ined. Its impli­ca­tions aren’t thought through as often as they should be. If it were, it might well have been aban­doned by now. We should stop using things like ‘hear Autis­tic voic­es’ and ‘lis­ten to Autis­tic peo­ple’ as plat­i­tudes because these state­ments aren’t effec­tive­ly explain­ing what we hope par­ents will learn and do. The old saw sets some par­ents on the path to good infor­ma­tion, but it is eas­i­ly mis­in­ter­pret­ed and some­times delib­er­ate­ly twist­ed into an excuse to avoid lis­ten­ing to what most Autis­tic peo­ple have to say.

When par­ents are advised to lis­ten to Autis­tic peo­ple with­out fur­ther instruc­tion on how to do that, they often go look­ing for opin­ions alone on the inter­net. The par­ents with the best inten­tions may latch onto the first or loud­est peo­ple they encounter. Oth­ers may look for Autis­tic adults who will tell them what they want to hear. Often, these indi­vid­u­als are not Autis­tic lead­ers or seri­ous­ly involved in our com­mu­ni­ty. Their opin­ions are not rep­re­sen­ta­tive of our range of main­stream opin­ion and cul­tur­al norms. A par­ent is more like­ly to stum­ble across rad­i­cal blog­gers with noisy fol­low­ings, moti­va­tion­al speak­ers many would term ‘pro­fes­sion­al autis­tics,’ and fig­ures like Tem­ple Grandin, who delib­er­ate­ly stand out­side of our com­mu­ni­ty, than aver­age Autis­tic people.

When we tell par­ents to ‘lis­ten to Autis­tic peo­ple’ with­out explain­ing what we real­ly want them to do, they often fol­low the path of least resis­tance to fringe views. A pop­u­lar moti­va­tion­al speak­er may have no exper­tise beyond per­son­al expe­ri­ence. A con­tro­ver­sial blog­ger may be dog­mat­ic about a very nar­row slice of Autis­tic opin­ion and pro­vide no infor­ma­tion on any­thing else. A par­ent who stum­bles across an ini­tial com­mu­ni­ty con­tact who is self-serv­ing, who sees oth­er opin­ions as heresy and any­one with dif­fer­ent ideas as a rival, may have trou­ble get­ting access to more infor­ma­tion. The peo­ple who are quick­est to hold them­selves out as experts are not always the most knowl­edge­able or altru­is­tic and don’t always have par­tic­u­lar­ly rep­re­sen­ta­tive views.

Even­tu­al­ly, more main­stream advo­cates appear to crit­i­cize those views, and the par­ents become resis­tant or con­fused. Often, they respond by say­ing that peo­ple who iden­ti­fy with the Neu­ro­di­ver­si­ty Move­ment only want par­ents to lis­ten to Autis­tics with whom they agree. This is true of us, to an extent, but no more than it is for every­one with an opin­ion. Par­ents who mean well walk away from these exchanges not know­ing where to turn for help. Par­ents cling­ing to prej­u­dice find it easy to dis­miss the bulk of Autis­tic opin­ion. Advis­ing peo­ple to ‘hear Autis­tic voic­es’ with­out explain­ing what that actu­al­ly means is feed­ing that dynam­ic, per­pet­u­at­ing bick­er­ing, and mak­ing it hard for par­ents to find what they need and sup­port their chil­dren as well as possible.

What we should be say­ing is that there are many Autis­tic peo­ple with a wide vari­ety of opin­ions and degrees of knowl­edge and con­nec­tion to the com­mu­ni­ty. Opin­ions are ubiq­ui­tous and var­ied. Peo­ple have all kinds of motives. There are, how­ev­er, areas of wide­spread con­sen­sus. The best way for some­one who is new to this to absorb all the nuances and com­plex­i­ty is to browse the whole buf­fet of ideas. Go to in-per­son events, if pos­si­ble, and lurk or ask ques­tions in many dif­fer­ent cor­ners of the Autis­tic inter­net. Research wide­ly, i.e. learn about what lots of Autis­tic adults are say­ing, more than deeply, i.e. a lot about what a few peo­ple think, at the begin­ning. Try to find a diverse sam­ple in terms of age, gen­der, race, geo­graph­ic loca­tion, reli­gion, and sex­u­al orientation.

Many of our con­flicts with par­ents are legit­i­mate, but we’re unfair to them when we don’t ade­quate­ly explain what we hope they will do and then cas­ti­gate them for fail­ing to do it. Teach­ing par­ents how to inter­act with, and get the most for their chil­dren from, our com­mu­ni­ty is too impor­tant to address hap­haz­ard­ly. The right advice is to tell par­ents to look at a wide vari­ety of opin­ions, find the points of con­sen­sus, and learn what lead­ers and aver­age Autis­tics think. The more we can be clear, the more par­ents who want to do the right thing, seek infor­ma­tion from adults, and incor­po­rate the Autis­tic world into their chil­dren’s lives will be able to do so. When those of us who are will­ing to take the time to work with par­ents give the best pos­si­ble advice, we draw them toward our com­mu­ni­ty and increase our chances of being able to nur­ture and pro­tect Autis­tic chil­dren. This is too impor­tant to be left to tra­di­tion and plat­i­tudes. The words we have used aren’t work­ing because they are too eas­i­ly mis­in­ter­pret­ed, whether inno­cent­ly or with an ulte­ri­or motive. We need new ones. We need to be clear and specific.