featured Inclusion

Who’s in charge? How autistic activists are excluded from policy making in Nova Scotia and Canada

KJIPUKTUK( Halifax) – October is Canadian Autism Awareness and Acceptance Month.  For the autistic community, however, acceptance is the only thing that matters, as we have had more than enough “awareness” to last us the rest of our lives.

Within the last few years, autism has become a major topic of discussion in the halls of power in this country, especially so at Nova Scotia’s Province House, at Queen’s Park in Ontario, and in Ottawa.

It’s time to take a critical look at who really holds the power and influence with autism-related public policy issues.

Note that for this article, I will be using the term neurotypical extensively.  For a list of definitions of various neurodiversity-related terms, please see this list.

Mainstream autism organizations

It should come as no surprise that any public policy discussion regarding autism is dominated by non-autistic people. This is very much by design, when you consider who’s in charge of the major autism organizations, as well as media coverage.

Take for example Autism Nova Scotia. They are almost entirely staffed by neurotypicals. There are a few autistics who work there, but not in any major decision-making positions. This is fairly typical of most autism organizations.

However, the mainstream autism organizations is not the only place from where autism activism originates. There are many autistic activists who are well-respected in the international autistic community, and many who have been involved in advocacy work for longer than the mainstream organizations have been around. But if we only listened to said mainstream organizations, we would never know these activists even existed.

Why are the mainstream autism organizations so reluctant to include activists outside of their organizations? Is it because they themselves have been subjected to so many pathologizing messages about autism that they don’t know how to communicate otherwise? Is it because they’re afraid that promoting the radical activist autistics will alienate their corporate sponsors and wealthy donors? Or is it for some other reason?

Neurotypical Dominance

Neurotypical parents of autistic children, as well as the higher-ups in major autism organizations, are generally more politically active than actually autistic people, and they have substantial resources to influence the political process. Not surprisingly, most autism-related public policy is primarily influenced by the perceptions, preferences and priorities of neurotypicals.

Here in Nova Scotia regular discussion regarding autism in the Legislature rarely, if ever, focuses on first-voice perspectives. Very few actually autistic people get to present at the Law Amendments Committee on issues that affect them; it’s mostly neurotypical parents and professionals. And MLAs and MPs are always happy to meet with non-autistic parents and professionals, but it’s not very often they meet with actually autistic activists.

No Real Power

Another major issue is the fact that certain neurotypical-run organizations appear to be intentionally keeping autistic advocates “in their place.”

Some organizations, such as Autism Canada, have an “ASD Advisory Committee” or a “self-advocacy advisory group”, or something similar. This sounds good at face value, but an “advisory group” often has no real power to influence decision-making. Unless Autism Canada can explicitly say how their advisory committee influences any decision-making, then the advisory group may merely be tokenistic.

This doesn’t sit well with a lot of autistic-run organizations and autistic people in general.  We are tired of settling for simply “a seat at the table”….we want to be in charge. We have to be in charge.  Think about it….if women’s groups were led by men, or if organizations for People of Colour or Indigenous people were led by white people, there would be a huge outcry!

So why is it okay for the mainstream autism organizations to be run by neurotypicals?

Media Coverage

Yet another contributing factor to the lack of knowledge around the autistic community is media coverage, and especially media neglect. The mainstream media has never done a good job of covering autism issues. Pay attention to any local news stories on autism and you’ll see, once again, that it’s dominated by neurotypical parents and professionals.

Even when they do report on actually autistic people, it’s typically done in a very narrow fashion. Often it’s little more than an “inspiring story” or the autistic person is reduced to a prop.  This is true for media coverage of other disabilities, too.

What Needs to Happen

All these factors greatly diminish any influence autistic people have over decisions that affect their lives and the lives of the next generation of autistics. This problem will only get worse if the neurotypical players involved don’t make serious changes now.

Thankfully, change is gradually happening. Newer groups like A4A Ontario and Autistics United Canada are growing by the day, and becoming more politically active. While the mainstream media still tends to ignore them, they have been getting some media coverage, including a recent story on CBC.

What should also happen, is the mainstream autism organizations need to start promoting and authentically engaging the autistic activist community. As I’ve mentioned before, the mainstream organizations are choosing to ignore these people, even though many of them were fully involved in advocacy work before the mainstream organizations even existed.

These mainstream organizations have a lot of influence with governments, politicians and the public, and receive considerable funding from governments, corporations, foundations, endowment funds, and individual donors. Therefore, they have the clout to signal-boost the autistic community.  

I’ll leave the last word to British autistic activist Jon Adams, who recently tweeted:

We need people who claim to act for us to actually act for us. We as autistic people need to take this over and negotiate terms for change…..We all need (to) lobby to address the inequality of funding between non-autistic led charities and organizations and autistic-led charities and organizations. Too often it’s in the hands of inappropriate ‘gatekeepers’ and those who ‘shout loudly’. We need to break this #NeuroTraditionalism.

See also: Treating autism as a problem: The connection between gay conversion therapy and ABA

Note: After publication of this article we were told that timing of the self-advocacy panel session at the CASDA conference was in fact intentional, and decided upon after input from the autistic participants themselves.  We removed the two incorrect paragraphs in question from the article. We regret the error.


With a special thanks to our generous donors who make it possible to pay writers such as Alex Kronstein for their important stories.

Subscribe to the Nova Scotia Advocate weekly digest and never miss an article again.