Autis­tic adults want more sway in their com­mu­nity

Cul­ture Ther­a­pists and par­ents of­ten lead pro­grams

Metro Canada (Ottawa) - - Front Page -

A grow­ing num­ber of Cana­dian busi­nesses are pro­vid­ing pro­grams and ser­vices geared to­ward autis­tic peo­ple, but some adult mem­bers of their tar­get au­di­ence want more of a say on how the of­fer­ings are de­vel­oped.

Or­ga­ni­za­tions from movie chains to air­ports to blood ser­vices labs have de­signed pro­grams geared to­ward ad­dress­ing the needs of peo­ple with sen­sory sen­si­tiv­i­ties or cog­ni­tive dis­abil­i­ties. Many of the com­pa­nies in­volved in the grow­ing trend say they’re com­mit­ted to sup­port­ing an un­der­served pop­u­la­tion, adding that mem­bers of the autis­tic com­mu­nity have had a say in the de­vel­op­ment of their pro­grams.

But some autis­tic adults, while wel­com­ing the fo­cus on bet­ter ac­com­mo­da­tion, say they need a more prom­i­nent seat at the ta­ble as they have per­spec­tives to of­fer that may not be avail­able from some high-pro­file autism ad­vo­cacy and sup­port or­ga­ni­za­tions.

They say many of those or­ga­ni­za­tions are led by ther­a­pists or par­ents of autis­tic chil­dren and may not be equipped to ac- cu­rately con­vey the needs of adults with di­rect ex­pe­ri­ence liv­ing with autism.

Their in­put, they say, could do much to en­sure cur­rent and fu­ture pro­grams are in­clu­sive for peo­ple in the autis­tic com­mu­nity and be­yond.

“There is a need for in­clu­sive ser­vices. I’m very glad that there is this shift and fo­cus on pro­vid­ing ac­com­mo­da­tions, not only in schools, but in the places we go to in our every­day lives,” said Vi­vian Ly, pres­i­dent of Cana­dian Autis­tics United (CAU), an ad­vo­cacy group led by adults with autism.

Ly said it’s com­mon to see busi­nesses turn to ad­vo­cacy groups led by non-autis­tic peo­ple for ad­vice on how to de­velop ser­vices for peo­ple who are not con­sid­ered “neu­rotyp­i­cal.” When CAU has of­fered to con­sult on new busi­ness of­fer­ings, Ly said they are of­ten con­grat­u­lated for their work but not ul­ti­mately in­cluded.

Ly said all par­ties have a le­git­i­mate stake in dis­cus­sions around autis­tic­spe­cific pro­grams, but said adults with autism should have a larger share of the con­ver­sa­tion.

For in­stance, Ly said, they’d have ad­vice to of­fer on ini­tia­tives such as the “Serv­ing Clients with Autism” pro­gram at blood ser­vices provider Life­labs.

The com­pany’s chief ex­ec­u­tive, Sue Paish, said the pro­gram that’s de­signed to make the blood col­lec­tion process less over­whelm­ing for autis­tic pa­tients was in­spired by a par­ent con­cerned about hav­ing to se­date their child in or­der to per­form a ba­sic blood test.

Af­ter con­sult­ing nu­mer­ous groups, in­clud­ing at least some prospec­tive pa­tients, Paish said the com­pany has at least one per­son trained to ad­min­is­ter the pro­gram in each of its more than 300 fa­cil­i­ties across Bri­tish Columbia and On­tario.

“Some of the things that we nat­u­rally do in a cus­tomer-ser­vice or­ga­ni­za­tion to make cus­tomers feel wel­come are the op­po­site of what these pa­tients need and want,” Paish said.

Ly said Life­labs is very much on the right track, but added staff should be more proac­tive when es­tab­lish­ing pa­tients’ per­sonal com­fort level around touch.

The Cana­dian Press

vi­vian ly, who is autis­tic, says adults with autism should be con­sulted more on is­sues that im­pact them.

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