Jules Edwards advocated for her autistic kids — then learned she’s autistic, too

In celebration of Disability Pride Month, throughout July MPR News is featuring stories about Minnesotans with disabilities who are making an impact. See more at mprnews.org/changemakers.

Jules Edwards is a Twin Cities-based Anishinaabe autistic author and disability justice advocate. After her kids were identified as being autistic, Edwards became a passionate advocate for people on the autism spectrum. She later learned she is autistic, too.

Edwards’ journey in advocacy began from a place of necessity, she explained. Edwards saw Native people, while disproportionately experiencing disabilities, often had the least access to supportive resources. She became committed to making the world a better place for generations to come.

Since then, she has served as a board member for the Minnesota Office of Ombudsperson for American Indian Families and a board member of the Autistic Women and Nonbinary Network. Edwards also co-authored a book to help families navigating autism services and to bridge the divide she saw between autistic advocates and parents of autistic children.

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Edwards plans to continue advocating for more holistic autism services that take into account mind, body and spirit.

Editor’s note: The following interview has been edited for length and clarity.

What drives your work in disability justice advocacy?

Edwards: I actually went to school for accounting. I am now a disability advocate, because life throws curve balls at people. Something that may be interesting to people to learn is that the disability community is one of the only communities that anybody can join at any point during their lives.

When disability became part of my world it kind of shifted everything for me. I started advocacy work by necessity by having to advocate for myself and my kids. Here in Minnesota, Natives have the highest rate of disability by racial group and the least amount of representation, the least amount of support, the least access. So, that’s what motivates me. I really want to help make the world a better place.

How did you learn you are an autistic person?

I was in my 30s, actually. Like so many other parents, I learned after my child was identified.

It was kind of an awakening, because when my first kid was diagnosed, I wanted to learn everything that I could so I could be the best parent that he needed me to be. So, I went to the library and borrowed every single book, every single DVD. I read every article I could find, joined support groups, and I didn't really have a specific idea of what I wanted to learn, I just wanted to learn.

I kept finding myself in what I was reading. And I was like, “Wow, that’s interesting.”

What is an area that you wish that there was more support around autism?

I would say holistic care. So often, everything is compartmentalized.

Within the Native community, a contemporary version of a model of holistic care incorporates the Medicine Wheel. We think about our mental health, emotional health, physical health and our spiritual health and finding balance within all of those areas in our lives.

Is there anything that you wish people knew about autism?

People tend to stereotype autistic people to be one certain kind of way, but everybody is different. Everybody has unique sensory profiles, everyone has unique splinter skills. That’s a term that means people who have strengths in one area and need support in other areas and it’s very different for everyone. But that’s true for everyone, not just autistic people.

What gives you hope for the future and how your children and future generations will grow up?

Disability advocacy and autism advocacy is shifting to include autistic people as leaders, and that didn't happen for the longest time. People being included in decisions about us is one of the things that gives me hope.