Neurodiversity conference grows autism awareness

For many, April represents a time when plants and flowers start to bud and bloom, but for Carolyn Tinglin and her family, it’s also about growing awareness and support for people with varied abilities.

April is Autism Awareness Month and as the parent of a child who is Black and autistic, Tinglin and her family have seen first-hand the void in support systems for people who are both racialized and neurodiverse. Chair of The Youth Alliance for Intersectional Justice (YAIJ), a non-profit organization Tinglin co-founded with her son Jantz, her team has been working to bridge the support gaps in areas such as education, research, housing and employment in Canada.

This month, the organization welcomed speakers, educators, students, parents and allies from across the Greater Toronto Area to a conference to explore new strategies and supports for neurodiverse students, learn more about the impact of social exclusion and glean from those who are championing advocacy.

Neurodiversity refers to an approach to education and ability that embraces various neurological conditions as the effect of normal changes and variations within humanity. ADHD, autism and dyslexia all fall within the spectrum of neurodiversity. Approximately one in 66 children and youth across Canada have been diagnosed with autism spectrum disorder. While the total number of neurodiverse Canadians is unclear, the Public Health Agency of Canada reports that approximately one in five people over the age of 15 has one or more disabilities.

Youth should feel a sense of safety and acceptance, regardless of where they fall on the ability spectrum, says Tinglin.

“We started this non-profit, because we couldn’t find Black organizations or youth serving organizations that could account for Jantz’s autism,” said Tinglin. “No matter what the program is, whether it’s a social program, an employment program or an entrepreneurship program, there was no flexibility to accommodate someone who is autistic. At the same time, with autistic-based programs, there was no diversity, so Jantz would be the only Black person… (w)e’re still the only agency that’s doing this work, which is sad.”

Event speakers included Halton Catholic District School Board Trustee Kirsten Kelly, anti-Black racism educator and Order of Canada recipient Robert Small, special education teacher Emily Ellwood and five-time Olympic and world champion sprinter Donovan Bailey, who has a foundation that supports Alzheimer’s and cancer research — challenges that impacted his parents. 

Kelly, a racialized person with a hidden disability, said one of the challenges is that neurodiverse students are not always sufficiently integrated into the school system with neurotypical students. While the separation of students might be necessary in some cases to implement specialized learning and resources, students should be made to feel a part of the wider student body and integrated as much as possible and as efficiently as possible. This works to not only raise awareness, empathy and acceptance but prepares students of all abilities to the reality of the neurodiverse world, said Kelly.

“In the work field and in university you’re exposed to so much neurodiversity,” said Kelly, who studies at the University of Waterloo and last year at the age of 19 became the youngest trustee elected to the Halton Catholic board. “Starting at a younger age, making sure that students are aware and accepting of people who are neurodiverse makes sure that they’re on the right path. Whether they’re atypical or they find out later that they’re neurodiverse, they won’t be ashamed of it. They become more accepting and don’t make people feel othered. They understand that normal is being different and everyone has their own unique identities.” 

Parents with children in public school boards around the GTA spoke openly about the challenges they face within the system advocating for their children who are often assumed to be less capable because of their autism. Black and Indigenous neurodiverse students are particularly vulnerable in the school system. Being racialized often makes them greater targets for violence and bullying, and depending on their abilities, less able to advocate for themselves.

Many adults present also reported having been diagnosed neurodiverse as adults, an experience that is not uncommon. It has been reported that many women with ADHD and autism may fly under the radar as children and youth.

Tinglin and her husband have fought hard over the years to get their son the support he needs. Coming through the school system, he has been emotionally and physically bullied in ways the family hopes no other student will have to experience. While the spectrum can be wide when it comes to autism and other neurodiverse conditions, the main objective, Tinglin says, is to ensure students are supported with the resources they need to achieve, with educators who see their unique giftings and support them in performing at their highest potential within the school system and beyond.

“We know how bad it can get for the kids who get pushed through high school but only read at a Grade 3 level,” said Tinglin. “Or the kids who are in the system and being supported by multiple agencies but are homeless. Kids who are looking for employment but because of their autistic characteristics, they can’t really hold down a straight, inflexible, prescriptive type of job. That’s really what’s out there. Our job and our goal is not to be elitist and not to present the ideal autistic person, but it’s really to get to those youth who are most at risk of being swept up and spit out by the system.”