Adults with autism want more of a say on how services cater to community

Vivian Ly, who is autistic, stands for a photograph during a break from classes at Simon Fraser University in Burnaby, B.C., on Friday, November 10, 2017. A growing number of Canadian businesses are providing programs and services geared towards autistic people, but their target customers say they want more of a say on how the offerings are developed. THE CANADIAN PRESS/Darryl Dyck

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 in-depth 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 health-care 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.

Addressing individual comfort levels is one of the main goals of Magnusmode Ltd, a Waterloo, Ont.-based company that works with other businesses to provide how-to guides for the autistic public.

Founder Nadia Hamilton said she was inspired to develop the company's signature MagnusCards app after witnessing how much her brother Troy would benefit from step-by-step instructions on various tasks.

The app features digital card decks on tasks ranging from banking to ordering food to navigating an airport, due in part to collaborations with companies including CIBC, Tim Hortons and the operator of Toronto's Pearson International Airport.

Drawing on her past career as a support worker, Hamilton said she consulted with her brother, other autistic people and autism organizations to develop her products.

"I saw an opportunity ... to build a bridge from the couch to the community. These individuals are usually relegated to a lifetime of being observers of the world. We wanted to create something that would help them to participate and be part of it when and how they wanted to be."

Hamilton said the app also allows individuals and caregivers to design their own decks for tasks best suited to their circumstances.

Calgary resident Riki Entz said, however, that some may feel products like the MagnusCards app suggest autistic people must change to suit society rather than the other way around.

"Nowhere in this process does anyone else have any responsibility," Entz said. "I do not feel safer because I do not trust that people at (those) places would know how to best treat an autistic person."