Autistic adults want more sway in their community
Culture Therapists and parents often lead programs
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.
vivian ly, who is autistic, says adults with autism should be consulted more on issues that impact them.