When Heather Brown was a child, she read so many Nancy Drew books that she could often solve the mystery by the second page. But while she could sometimes focus intensely on her passions, other times she was completely scattered. Brown had a hard time maintaining friendships and was an easy target for bullies. She felt an aversion to the taste and texture of many foods, and struggled to eat enough to maintain her weight.
From 13 years old on, she saw doctors, social workers, therapists and clinicians with the appointments often occurring on a weekly basis to treat what they said was anxiety, depression and an eating disorder (not otherwise specified). But it wasn’t until the age of 30 that she was diagnosed with autism, along with Avoidant Restrictive Food Intake Disorder (which often occurs in neurodivergent individuals and didn’t exist as a diagnosis when she was younger), and then with ADHD at the age of 40.
Her story mirrors the experiences of many who grew up during a time when different neurotypes were conceptualized through a white, European male-centric and deficit-based lens. This is a problem because the traits of autism can look very different among sex and gender and ethnic and racial minorities.
“I don’t think doctors at that time had any idea of what autism might look like in a girl. The other problem is the discrimination we experience; the stigma and problems we often have in social relationships sort of coalesce into a mental health condition and… they don’t see what’s underneath,” says Brown.
But Brown wants to change that story. She directs AIDAN Lab at the University of Alberta, which has a community-based research process involving autistic stakeholders paid out of research grants. And she works on many other projects that are aimed to reframe the perception of autism.
“My working memory, my attention, my sensory processing, yes, it all works differently. But it is the judgment to say that I am broken or that I have some kind of deficit or weakness as opposed to just saying that I have a difference,” says Brown.
While there are now terms to describe different ways of thinking such as ADHD, autism, dyslexia or OCD, the idea of a “normal brain” is a myth, says Brown. And some of these differences can actually be beneficial. After all, the ability that allowed Brown to hyper focus on Nancy Drew books is now something she uses as a researcher.
After grad school, Brown realized she had a huge gap in her own understanding. She had been trained in the “pathology paradigm” herself and was using ableist language such as “high” or “low functioning autism.” These terms are problematic because they may dismiss the challenges someone faces or they may elevate another’s challenges in a way that makes them seem insurmountable. Someone who is not verbal for example, may still have many other ways of communicating that are just as effective, but simply require accommodations.
“So for the last several years I’ve just been learning everything I can about how you do research ethically, how you research to promote positive social change and how to make the world a better place,” says Brown.
One of AIDAN Lab’s projects aims to do that by exploring how autistic post-secondary students view their experiences and what can be done to make them better.
“From a social model, we can look at disability terms of impairment; but the interaction with their environment is what makes them have the disability. So if they are unable to communicate well, the model would say we have to fix the person so that they are able to communicate. But if that person has their accommodations and resources, they would not necessarily have a disability anymore,” says Hannah Santilli, part of AIDAN Lab’s graduate team.
Brown says one of the big things coming out of this study is a need for guidance. “If I can see one million different details… and one million different pathways, it can feel really overwhelming to know which direction to go. So what I learned to do to cope is I talk it through,” she says.
Every Sunday morning, Brown goes over her work, with her dad. But, like so many things associated with autism, there is a stigma around the need for that support.
“Part of that stigma comes from capitalism. If you’re going to be a good worker you need to be independent; you need to have your shit together and you leave your emotions at the door,” says Brown. “And I think because we communicate in styles that are so different from, say, a white wealthy male having-all-their-shit-together kind of person, then people misjudge us.”
Even greater challenges face BIPOC people, she says, who are far less likely to receive an accurate diagnosis or support and are subject to systemic racism. There is still not enough focus on understanding the different ways that autism can present itself within varied ethnic and racial groups (as well as sexual and gender minorities) and prejudice can play a role in leading to an inaccurate diagnosis. A study by the Centre for Autism and Developmental Disabilities Research and Epidemiology, University of Pennsylvania, found that black children were 2.6 times less likely than white children to receive an autism diagnosis on their first care visit. And it is far more likely the child’s behaviour will be the focus rather than what is causing it — autism, in this case.
That lack of diagnosis will mean a lack of financial support, and understanding. And for those who do receive a diagnosis, accommodations are rare even though they may be simple, says Brown.
But her voice rises with excitement when talking about how she was hired along with some of the top autism researchers in the field to work on a project with the Autism Intervention Network on Physical Health (at UCLA). The project has a $15-million co-operative agreement (with the Health Resources & Services Administration) behind it to build a mentorship program to provide guidance for autistic researchers at grad school or in their early careers. There will be training opportunities and bursaries alongside mentorship opportunities that Brown knows firsthand are invaluable.
Increased accommodations would make a huge difference for autistic people who often must find their own ways to fit into systems that were designed for neurotypical people, says Jackie Ryan. Ryan was an autistic advisor to the AIDAN Lab research team studying camouflaging — basically anything from making eye contact (which may not come easily) to controlling facial expressions as a means of blending in — from the perspective of women. While camouflaging can help autistic people maintain relationships, obtain jobs or keep them safe from bullying or violence, it can be exhausting due to the hyper-vigilance required.
If neurotypical people or employers or teachers were to understand those with differences, there would be less need for these adaptive behaviours. It really just goes back to that idea of seeing autism as just a different way of being, without the stigma of being abnormal.
And it’s not a new concept. AIDAN Lab has weekly Zoom meetings with anyone who is interested talking about autism from anywhere in the world. A participant once brought up how in Cree the word used to describe autism (pîtoteyihtam) directly translates to “he/she thinks differently,” illustrating the impact of colonialism on views of neurodivergence.
Brown hopes for a day when more people recognize the good things autistic people bring to the table — like her analytical brain that helped spoil the endings of Nancy Drew books — rather than dehumanizing and discriminating them for their struggles to fit into neuro-typical frameworks.
“It’s around representation, finding role models, seeing possibilities, having autistic voices valued. If we can just as a culture begin to see the value, then a lot of that stigma stuff goes away.”
This article appears in the May 2023 issue of Edify