“Nothing about us, without us.”

This is the mantra of the disability rights movement that encourages those making policies and programs supports for us or about us to listen to actually disabled people of what we want and need.

When it comes to autism and the treatment and support of Autistic people, this has been a very frustrating and long road to get parents, professionals and organizations to hear us and acknowledge us #ActuallyAutistic people as being worthy to be listened to as experts on autism in our own right.

Most “autism organizations” are run by parents of Autistic children or professionals. So it’s been a slow road to convince these organizations and governments to hear us, give us a voice and allow us at the table when policy and programs are being decided that will affect us, or affect autistic children.

This situation has led to the creation of Autistic-led organizations that advocate strongly for every autism-related organization to have Autistic representation, which is a good and necessary thing. It’s a step forward in the evolution of disability rights, and it is a good thing that Autistic self-advocates are gaining the confidence to establish their rights, their voice in a tidal wave of voices that have attempted to speak for us.

We have been asking for years for these organizations to hear us, to listen to us, to include us in their decision making, in their planning, in their policy-making.

So what happens when an organization hears this message and pivots to open up a dialogue with Autistics and start leaning on us as they make policy?

This is what has happened with the Canadian Autism Spectrum Disorder Alliance (CASDA) over the past year. I read a post on social media where they were explicitly looking for Autistic self-advocates to review the call for proposals and the eventual proposals for talks and presentations at their annual Autism Summit conference.

Over the last few years, I’ve personally been calling out CASDA amongst other organizations to do exactly what they were now doing. So I decided to risk the angst of other Autistics who can find it hard to trust parent-led organizations and see what I could do to provide an Autistic lens to review what would be sent out, and what would be recommended to be presented.

This experience was amazing, fulfilling, and offered me and several other Autistic self-advocates an opportunity to shape their direction and call out things that otherwise may have been glossed over due to lack of lived experience.

After this small role that I played, I decided to become a full member of CASDA and see where else I could offer my #ActuallyAutistic experience and help shape the autism policies that affect every single Autistic, whether child, teen or adult. I was eagerly included in various opportunities, including helping write national policy briefs alongside other Autistic self-advocates.

Nothing about us, without us. This is exactly what CASDA has opened themselves to working towards with their actions over the past 2 years.

• Inviting Autistic self-advocates to develop policy
• Ensuring that the development of an Autism Strategy includes the needs of Autistic of all ages and needs.
• Encouraging and funding Autistics to speak and present at the annual Summit conference
• Working on an Autistic-led update to an Autism Language Style Guide

There is more that CASDA can do to include the Autistic voice as they progress, as with most autism organizations, including space for Autistic members on their board of directors. This can go a long way to providing that lived experience and Autistic lens that can help reach the ultimate goal of improving the lives of Autistic Canadians and their families.

I spoke to another Autistic adult, Elsbeth Dodman, who is presenting at this year’s Autism Summit, about her experiences with CASDA. I asked her how she got involved with CASDA:

“Rather by accident really. It was a few months before the pandemic -probably late 2019-ish. I received a link to a call for applications for the CASDA Autism summit to be held in March (I’m pretty sure it was March -sorry, this year has left everything kind of a blur). And if I’m being very honest and very blunt I didn’t really look at the aplication, who was running it or much more as I like getting to speak at events – it’s fun and I’m passionate about Autism stuff – and the closing time for applications was like 24 hours away. So I hastily filled out the online application and thought ‘I’m so late to this and I just made it up in 30 min, they’re not going to accept my application’ but felt it was worth a try. Nothing ventured nothing gained. And I promptly forgot about the application.“

I also asked her what has been her experience as an Autistic self-advocate with CASDA and are there any things you’d like to see CASDA improve to be more Autistic-friendly?

“I didn’t go in to support CASDA or any org in particular. I had a talk I felt CASDA and orgs needed to hear so I shared it but wasn’t trying to side with anyone in particular. I’d want to know/see how many Autistic people from across the spectrum and including diverse persons they’re bringing in to speak or present/ host a table etc. As I say in the talk I filmed for CASDA, if Autistic people see other Autistic people being involved/included than we’ll have more trust in that organization. And we’ll tell other people about it.“

One of the big reasons that a lot of Autistics have concerns with CASDA is over the concept of a National Autism Strategy. There are a lot of misconceptions about what it is and what it could be. There is also concern that it is competing with the concept of a National Disability Strategy. I too thought that a year ago, but after being in the weeds of the intersection of provincial and national policy, research and on the ground supports and services for the last year and a half, I have learned some hard truths about autism in Canada.

In Canada, most other disability “communities” have cohesive ideas of what their disability is, who is responsible for supports, what those supports are, and they have organized themselves into clear organizations both local, provincial and federal. When it comes to autism, however, its a mess of silos and a murky picture as to what autism is, who to help and what supports are needed. It’s even less clear who in government is and should be responsible for enabling those supports.

Back in October, during the federal election, I had a long conversation with MP Mike Lake about my push for a National Disability Strategy that would include an autism strategy. What he said in response really stayed in my mind, and made me think a lot. He said that a National Autism Strategy is needed NOW because there is no coordination, there is little collaboration between all the provinces, all the organizations, all the providers and all the parents. It’s not about changing who funds what to whom. It’s about sharing info and research, and collaborating, and not reinventing the wheel.

A #NationalDisbabilityStrategy is still VERY important. We need to make a strong hard push to get governments federal and provincial to make systemic changes to remove all barriers to the over 65.4 million Canadians with disabilities. The Accessible Canada Act is a really good first step to begin identifying and unraveling these barriers. I am fighting equally hard to make this happen.

So I decided to get involved with CASDA so I can help shape the policy, influence it through both an Autistic lens and the lens of how this NAS fits within a larger NDS and a truly Accessible Canada. There are two things we need.

We need the larger autism-related organizations and professions including and engaging Autistics, and we need them to be coordinated and collaborative and experiencing the diversity of autism research and experiences.

We also need to push for all these parts of a National Autism Strategy to feed into The Accessible Canada Act, and other things that will make a National Disability Strategy a reality. CASDA is working with a coalition of other national disability organizations to push for a greater strategy of meeting the needs of all disabled Canadians.

So we all need to get involved. If you want to see change in autism policies, get involved. If you want to see policies and programs reflect the needs of you, or your children, or your friends and family, get involved.

Be part of the change. Take the risks. It can be daunting, and it can be difficult, but when it works and you are listened to and heard, it can make all the difference in the world. There will be differences of opinion, and differences of direction, but as I say to everyone at election time, if you don’t vote, you can’t complain about the result. We need to vote by participating, by being a member, by volunteering, by filling out surveys, by sharing your life experiences.

As my friend and advocate, Elsbeth Dodman, said to me, “They do seem to be more willing to have Autistic people talk at their event and if you have something you want people to know and they give you the opportunity to say it – say it. And if your audience listens great! And if they don’t, well they cannot pretend no one told them – you told them. And that’s a big part of advocacy and making change; it’s going into places and speaking your truth and changing minds.“

I’ll be at the CASDA Summit virtually this week, and I will share my experiences in another follow-up post. In the meantime, wherever you are, if an “autism organization” is actually asking for an Autistic viewpoint, consider giving it. We really can make a difference in the way they see autism.

“Nothing about us without us.” It’s time to make that happen.