My mother knew early on there was something different about me. I resisted transitioning from baby food to a more varied diet. I didn't like physical contact. As I grew, I had a hard time forming and maintaining friendships. My mother never suspected these were manifestations of autism spectrum disorder (ASD), a condition that would go undiagnosed-or misdiagnosed-for 30 years.
No one understood my hyper-reactive sensory system was underlying my distress, so no one could tell my mother that. Instead, they told her I was broken and she needed to bring me in to be “fixed.”
The moment of recognition came later in life when I was teaching Grade 2 in Ontario. I had a boy with autism in my class. At that time, I didn't know much about autism. So I asked someone and they said something about social problems and difficulties in communication, so I started to do more research by myself. And as I watched this student in my class, I started to wonder if my Grade 2 self would have looked and acted as he did.
The day I was formally diagnosed as being on the autism spectrum brought great relief after a lifetime of harmful labels and ineffective attempts to “fix” my behaviour. At last, I had a framework to understand the ways in which my mind processed information differently than those around me.
What is critical to understand is that this difference is only atypical because there are fewer people in the world who have brains that work like mine. But there is nothing inherently wrong or bad about how my mind thinks and perceives the world.
You see the house, I see the blueprint
My brain doesn't understand a lot of social rules, because my brain is built differently than most. Imagine that you are looking at a house and that you have a good understanding of the general workings of this house. In comparison, my brain doesn't even really perceive the house. To my brain, the house is just a covering overtop of some system. Rather than seeing the covering, my brain sees the blueprint of that system, like the frame of the house.
Although I do not understand or even perceive the house at first, with time and patience, I will eventually be able to see the house. If given enough time and motivation, I will begin to see all the pieces and parts of a system. As I do, I organize these pieces by placing them one by one into their spot within my brain's understanding of that system. Only then can I finally see and understand the house as an integrated system of parts. But once I do build that model of the system in my mind, I soon realize that I often understand that system better than those around me.
After my diagnosis, I returned to university in hopes of improving my career prospects in Ontario's education system. Instead I discovered the rigours of graduate studies agreed with my disposition and aptitudes. I was trying to find a setting where my strengths matched the needs of the community. My therapist thought academia might be a good fit for me because everyone in academia has an intense special interest, so the fact I have intense special interests is just normal.
Now, as a professor and researcher, I can apply my passionate interests to identify the strengths young autistic students have and to develop appropriate academic interventions in hopes of building on those strengths so they can thrive throughout their lives.
To date, my research has focused on working one-on-one with students to identify predictors of mathematical aptitude and narrative writing ability in children, adolescents and adults with ASD. Now, the mission of my AIDAN Lab is to explore the ways in which youth and adults with ASD can thrive both at school and in the greater community. By studying the ways in which youth with ASD learn, our research will contribute to inform the creation of targeted supports for students with ASD with the goal of bridging the gap between academic success in childhood and successful participation in society in adulthood.
Moving beyond labels to discover strengths
Every person with autism has strengths and we can follow those strengths in order to help them find meaning and purpose for their lives. We can help them make valuable contributions to society.
This work has entailed building a community of support and understanding with the graduate students I supervise, some of whom have siblings with ASD, and creating opportunities for U of A students with ASD to gain valuable job experience by helping collect research data. I'm also focused on combating the stigma and stereotypes that place even more barriers and limitations on people with ASD.
We have a myth that autism looks a certain way — it's a boy, it's a super-scientist, it's someone who thinks in pictures like Temple Grandin, it's someone with social problems, or it's like the character Data from Star Trek: The Next Generation. But really “autism” is just a label that helps us better understand the overall system of human development, so our definitions will never be exact. So instead of focusing on the label, I want to move society beyond that label to describe who these people really are and what they need to thrive.
A positive step would be to understand ASD as a brain-based, neurological difference, rather than a medical disease. Instead of just saying that the brains of people with neurodevelopmental disabilities learn differently and so will need specialized supports, too many of us are still implying that students with autism, ADHD and learning disabilities are broken, that there's something wrong with their brain and they need to be fixed.
You can't take autism and cut it out of me. I am who I am. But just like everyone else, I can learn. So there is great potential for my strengths to make a valuable contribution to society as long someone will take the time to help me understand and see all the ways in which I do have value.
Heather Brown is a professor in the Department of Educational Psychology.
This article originally appeared in Illuminate, the online magazine of the Faculty of Education.