Adults with autism want to give more input on services catering to community

TORONTO 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.

The programs range from digital apps laying out steps of common activities that take place at a business to special “sensory friendly” events with features such as brighter lighting and lower sound.

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 accurately 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. “However, we have not been consulted on a lot of them.”

Ly, who asked to be referred to by gender-neutral pronouns they/them/their, 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 autistic-specific 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, adding staff are trained to have indepth conversations with all patients to determine their individual needs. “That’s why the focus is on connecting and understanding.”

Ly, who has used the service, said LifeLabs is very much on the right track. But, Ly added, staff should be more proactive when establishing patients’ personal comfort level around touch.

“It would be great to have healthcare professionals not put the onus on us to clarify that we don’t like to be touched unless we’re warned.”

Maggie Dimock, a former Winnipeg resident currently living in the U.S., said entertainment companies catering to neurodiverse audiences could also benefit from more direct feedback from adults with autism like herself.

She cited companies such as Cineplex who offer periodic “sensory friendly” movie viewings.

Those events are almost exclusively geared toward children, with animated films and other age-appropriate offerings scheduled to air in mid-afternoon timeslots that often aren’t accessible for adults, she said.

Cineplex did not respond to a request for comment, but its website said it is working on expanding screenings to “be geared towards teens and young adults as well.”

Sensory friendly shopping events also tend to be offered during compressed time windows, Dimock said. Extending those hours would allow businesses to accommodate more people, reduce crowd sizes and offer an additional benefit to those uncomfortable in large groups, she said.