Engaging Those Who Get It

by Jessica Delaney, Principal, Engagement + Communications

 I recently heard a new term that caught my attention: neurodiversity. The term is not new and was coined in 1988 by Judy Singer. The National Symposium on Neurodiversity at Syracuse University states that neurodiversity is a concept that recognizes and respects human variation which include labels such as Dyspraxia, Dyslexia, Attention Deficit Hyperactivity Disorder, Dyscalculia, Autistic Spectrum, Tourette Syndrome, and others.

The concept of neurodiversity is often used in the autism community and refers to the notion that we need to accept people from different neurological backgrounds as they are. The idea is that people do not need to be “fixed” or “cured” but rather, we all come from different neurological backgrounds and we need to help each other where we are at. Fundamentally, it is not about having people from different neurological backgrounds “fit in”, but rather understand the accommodations that could be made to support people and, equally, equip people with different neurological backgrounds with the necessary tools to participate in “mainstream” society.

While this is all very interesting, it also struck me in the context of Ontario’s reversal on autism funding. The newly elected government had made sweeping changes to autism funding. The changes were so drastic and posed such dire impacts on families across the province, that parents and providers protested in the streets, campaigned, and lobbied. A senior bureaucrat resigned, and a palpable panic washed across an already exhausted community.

Earlier this week, the government announced that they got it wrong and were changing their approach. My first thought was: how will they know they’ve got it right if they don’t engage youth on the autism spectrum? What about their families, providers, supporters and champions?

Some might think engaging youth on the spectrum would be an impossible task, but I believe it would just be too easy to say it’s too hard. Don’t those who access programs get a say? The solution needs to fit the problem, but perhaps we need youth and families to help define the problem first.

For too long, government has seen itself as the funder and fixer and if ever there was a case for a community-centric approach, it’s this. Let’s take a neuro diversity approach to thinking about engagement when it comes not only to autism funding, but how we bring people who might be coming from a different place to feel safe in participating. I am not on the spectrum (at least that I know of) and so I am not well placed to tell you what it’s like being on the spectrum, but I know there are lots of kids, youth and parents who can tell you exactly what it’s like and what solutions might best support them.