Director, Programs & Services
Community Operations Facilitator
When working with individuals living with ASD, clinical practices and patient care must prioritize diversity and inclusion.
Autism spectrum disorder (ASD) is a complex condition related to brain development that impacts approximately one in every 66 children in Canada. When offering care to patients with ASD, understanding how the condition manifests is important, but it’s even more essential to understand how intersecting identities can affect an individual’s experience.
A condition that’s difficult to characterize
“ASD is a developmental disorder that can result in varied ways of communication, behaviour, and social interaction,” explains Shelley Brazier, Program Director at the Geneva Centre for Autism, a non-profit organization dedicated to empowering individuals with ASD and their families to fully participate in their communities.
Brazier notes that how that looks for each individual can vary quite widely. While signs and symptoms of ASD can include communicating in non-verbal ways and repetitive behaviours, the condition affects individuals differently — and some may have none of these symptoms at all. Furthermore, intersecting identities — such as race, gender, and class — can result in markedly different experiences and expressions of ASD.
Because ASD affects people so differently, it can be challenging for those interacting with people with ASD — from first responders to teachers, doctors, and other professionals — to recognize the symptoms and respond appropriately. It’s essential that we all work to be aware of the triggers and behaviours common to ASD patients, so we don’t misinterpret their actions. It’s also essential that we build better bridges to the communities we wish to serve, taking the time to listen to the stories of those affected.
Unconscious biases put kids at risk
When working with the ASD community, diversity and inclusion are incredibly important, and inclusion needs to be the main goal of agencies like the Geneva Centre. Individuals with ASD often feel that they’re not included in their communities because of their neurodiversity. Compounded with race, the feeling intensifies.
Taryn Persaud, Community Operations Facilitator at the Geneva Centre for Autism and co-chair of its Diversity Committee, notes that there’s a big shift happening in how clinicians work with ASD and BIPOC patients. “As a clinician, you’re looking at an individual and their many intersectionalities,” she says. “You want to understand the whole person, not just their ASD.”
For those with ASD, barriers to inclusion can include anything from the colour of one’s skin to socioeconomic status, religion, and other cultural variables. “For a clinician, one of the biggest things is recognizing that all of these factors are a part of your treatment,” says Persaud.
The power of clinicians stepping up to the plate
A client of Persaud’s, a 31-year-old Bengali-Canadian woman with ASD, describes the challenges of being a BIPOC patient in a system that still has a long way to go in building strong allyship.
“My brother was diagnosed at three years old and one of his ASD symptoms was that he couldn’t swallow his food,” she recalls. “The professionals working with him thought there was abuse happening in the home, instead of understanding the traits of ASD. They made my mom feel horrible instead of supporting a new parent to the ASD world.”
The patient notes that in other cultures around the world, there is no word for ASD. “This was embarrassing, and they couldn’t help,” she says. In her own ASD journey, she describes feeling judged, misunderstood, and silenced.
Clinicians working with ASD patients would do well to understand these cultural differences, to create a safe space for clients to speak freely, to develop better listening skills, to offer more education for BIPOC families to understand ASD, and to encourage more BIPOC representation amongst clinicians and peer support workers.
Resources for clinicians and parents
The Geneva Centre for Autism has prioritized incorporating diversity and inclusion practices into its treatment protocols. “Our staff members have attended workshops that help them understand the history behind racism and anti-racism, and that provide tips and skills that they can incorporate,” says Persaud. The Geneva Centre has also formed an Equity, Inclusion, and Diversity committee, of which Persaud and Brazier are co-chairs.
An area that needs to be improved for parents of children with ASD is easily accessible BIPOC specific resources. “The Black Parents Support Group in Toronto is the first of its kind,” says Brazier. “It’s a place for Black parents who have a loved one with a developmental disability to support each other and to share their experiences with other Black families. As a woman of colour with a child with ASD, I’ve attended this group and it has been incredible.”