Adam attending college. I can barely catch my breath. It’s going swell but there’s so much more work.

Adam and I have always collaborated with others, and between ourselves, but we sure have been through a time of hectic transitions and he’s gliding through all of it! But I’m writing this to make something visible - what it takes to support a deserving, wonderful, articulate non speaking autistic person (or any other person) who otherwise does not get access to the supports he needs. Access happens because of what I put into it with Adam - with his assistants who I also train because training otherwise consists of ABA in Canada.

I say this not to compose a burden narrative or somehow suggest Adam doesn’t have agency. He directs his own support now that he’s an adult.

I’m writing this in a FB post because first, it’s all I have time for at the moment, and second, we need to make it known to Canadians what many parents have to do to provide this important access - TO MAKE IT VISIBLE so that we can understand what support for access can mean and how the system needs to change and help provide families with supports.

I have to help Adam navigate all the forms, accessibility meetings, computer stuff, emails, zooms, homework, readings. His college is in addition to what work he does such as writing books and making experimental art. I do this because some of his motor planning would otherwise make this process too slow for him to access all that’s thrown at him in a day. Think of *your* inbox and admin! He doesn’t need all that busy work!

Then there’s staff training, scheduling, coordinating other schedules, conferences, publishing *his* work.

Then there’s dis assembly collective meetings, management/scheduling exhibition planning, admin and soon, grant applications and fundraising and more.

Then there’s my own management and admin, websites, and work that supports dis assembly and neurodiversity - some of it academic work. And I’m leaving a lot out here. Once I get to my own stuff I’m often too tired for it.

Cooking? Love it but have little time. Exercise? Really long for more time for that as I am trying to care for my health. Medical appointments? Hit and miss. Socializing? Seems little worth my time if it’s not stimulating in some way - or else I end of having to explain what Adam and I do and it can be tiring. I’d rather be with our neurodivergent people.

What kinds of things do you want to know about how to support and how we do this? Because once Adam’s new supports are able, I’ll be able to finish my book and also the “handbook” that’s half cooked for his support people and future planning. I love to write about what it takes as a reality check because as Michelle Hewitt wrote about disability and poverty in Canada recently on CBC - in the sense that Canadians just believe that disabled people are looked after when most are otherwise living in poverty - they don’t realize the reality of 24/7 care outside the pathology paradigm and burden narratives.

I happen to LOVE this work as I witness the changes and accessibility Adam is now experiencing - which was never available to him for so many years. But we need more change. I believe that instead of funding for ABA, all autistic Canadians deserve the funds for hiring their own support assistants of various kinds: from academic and communication assistants to admin assistants to intimate care givers. Everyone deserves food security and a roof over their heads outside of the institutional model. This makes a life possible and possibly wonderful. Schools too need an inclusion that isn’t part-time integration or total autistic segregation.

The reality of support for autistic adults, particularly non speaking people, isn’t understood by Canadians. Just because someone can go to school, can write books…does not mean that this can always be attained without the accommodation that is daily facilitation.

Agency is relational. It’s just so much more visible for disabled people. So make the support visible. And as Adam would say, that includes the non human “atmospheres” he seeks for support. Let’s keep talking about the real conditions, and the paces, that support neurodiverse people.