New Program Helps People With Autism Overcome Barriers in Accessing COVID-19 Vaccines
By Maria Sarrouh
Toronto Star
Thursday, July 8, 2021
The noise, bright lights, winding lines and moving parts of mass immunization sites may be anxiety-inducing for plenty of people. But for some individuals with autism and others who have sensory issues, the experience can be entirely overwhelming.
Among the “unmet needs” still hindering people with autism from receiving their first or second dose of the COVID-19 vaccine is the possibility of experiencing sensory overload at vaccine clinics, said Anne Borden King. She’s a spokesperson and board member for Autistics for Autistics Ontario (A4A), a collective of adults with autism advocating for reform to autism funding and services, provincially and federally.
“Many autistic people are essential workers, and have a lot of difficulty getting time off work to co-ordinate getting their vaccinations,” Borden King said. “If you add that someone would like to have time off after their vaccine to get over the sensory issues –
maybe the whole afternoon off, or the whole next day off – it’s very challenging.”
Through a new program offered by A4A, a person with autism who has been immunized is connected with another seeking assistance with booking a jab, navigating a vaccine site or tips to help with sensory overload at the clinic. The service launched on July 6, in partnership with the City of Toronto and the Centre for Independent Living Toronto.
Borden King recommends scheduling an appointment for early in the morning, when clinics are less crowded and noisy. People with significant sensory issues can request to use the designated private, quiet areas at vaccine sites, where they can lie down to get their shot and avoid auditory processing issues that can arise with loud crowds and big spaces. Having a support person there to assist with directions and instructions is also helpful, she added.
A4A’s two vaccine ambassadors spend very little time explaining that vaccines are safe; the majority of people with autism already know that, said Borden King. Instead, they work to support the autistic community with access barriers, like difficulty booking appointments.
“The unmet needs in our community are that people have access issues, particularly communication and sensory issues, as well as organizational issues, with setting up an appointment for a vaccine,” she said. “It’s confusing for everybody.”
Because the system isn’t “universally designed,” people with autism may need to find someone available to go with them to their appointment, Borden King said. Ambassadors may accompany them, particularly if a person is nonspeaking or uses forms of augmentative and alternative communication to facilitate conversations.
If the person uses a device to communicate, vaccinators and staff should watch for changes on the screen. They should talk to the person receiving the vaccine directly instead of looking over their shoulder, and not speak for them, among other best practices, to create the most inclusive and positive experience, she explained.
One of the reasons peer mentors within the community are so important is because younger adults don’t want their mom or dad helping them all the time, Borden King said. Recently A4A received a request for assistance from a teenager. Because both people in the peer-to-peer connection have autism, a “quick connection” is usually made, built on trust and understanding.