Feature Issue on Disability Rights, Disability Justice

Meghan Ashburn, left, and Jules Edwards at a book launch event.

We published our first book together in 2023. It is the only book of its kind, dedicated to exploring the dynamics between the adult autistic community and non-autistic parents of autistic children. I (Jules) am an autistic parent of autistic children, and I (Meghan) am a non-autistic parent of autistic children.

The title we chose, I Will Die On This Hill, mirrors the tone throughout the book passionate, raw, and at times, controversial. Filled with personal stories, guest contributions, and targeted resources at the end of each chapter, our goal was to create the book we wished we had when our children received their diagnoses. While the book covers a wide range of topics related to autism, it does not have a singular message. Some of our opinions conflict with one another, which adds depth to the conversation.

Our focus on intersectionality throughout the book aims to ensure that everyone in the broader autism community feels represented. This is important to both of us, as our families cross many of those intersections.

How We Began

We each learned we were parents of autistic children in 2015. Like many parents of children with a new disability diagnosis, we felt lost, overwhelmed, and alone. Determined to learn about how to support our children, we researched autism by reading books, attending support groups, and asking Dr. Google. We also sought a sense of community on social media.

The information and advice we received varied. My (Meghan’s) twins were born prematurely and had been receiving care and services since their early days in the NICU. As soon as my children received a diagnosis of autism, the information I received from the medical community about my children challenged my entire understanding of early childhood development and best practices. The medical model of disability treats autism as a disorder that needs to be fixed or treated.

My (Jules’) children were not identified as needing additional support until 10 years into my parenting journey. That isn’t to say they didn’t need support, but disabled children who are BIPOC (Black, Indigenous, and other people of color) are often written off as difficult, rather than evaluated for disability. Being Indigenous to Turtle Island and an Ojibwe matriarch, I already observed the Relational Worldview framework of the National Indian Child Welfare Association, which lends itself more to the social model of disability. In this model, disability is a natural part of life, and it is the job of our society to inclusively accommodate and support disabled people.* The Relational Worldview is the Indigenous worldview, which understands that all aspects of our lives are related.

My own autism diagnosis occurred around this time, and my path to learning about autism was much different. I immersed myself in the Disability Justice Movement, which fully aligns with the Relational Worldview. I also used the 10 principles of disability justice that were developed by Sins Invalid to guide my learning and advocacy.

Not long after our autism journeys started, and in search of community, we met online. It did not go well. Our polarized understandings of autism led us to heated arguments, name calling, and judgment. Suffice it to say, we did not find the sense of community we were looking for in each other.

Our story isn’t unique. We spent years watching our conflicts play out in social media groups, news articles, books, and interviews. The adult autistic community and the non-autistic parent community seem to be standing on separate hills, fighting about how best to support autistic children.

Why We Do This Work

When a child is diagnosed with autism, the parents' existing support systems often fall apart. Most parents who do not have autistic children do not understand the unique parenting journey that parents of autistic children face. Their parenting may be judged harshly. Worse, their children may be rejected from playgroups with typically developing children.

There may be any number of reasons that an autistic child is excluded from their natural community, all of which stem from ableism. Perhaps the adults don’t want to extend grace to an autistic child. Perhaps they’re afraid their children will “learn” autistic traits, or perhaps they’re afraid that the autistic child will harm their child.

This rejection is painful, no matter the cause.

Parents of autistic children experience second-hand rejection, which robs them of a support system. When that happens, they often seek relationships with other parents of autistic children, whether by joining a formal support group or via social media.

Parents end up learning from the community that is most inviting and supportive. Some wind up in parenting circles focused on “curing” their children or they buy harmful detoxing solutions and other products. Others find themselves in groups that have no disabled adult representation.

The non-autistic parents who do find their way to autistic-led groups are sometimes met with harsh words and judgment, and there are many reasons for that. Like Jules, these autistic adults encounter parents everyday who use the medical model of disability. They hear the deficit-based descriptions being used, and the stories of parents trying to cure their children.

Oftentimes, what non-autistic parents interpret as harsh or judgmental words stem from the communication differences autistic people and non-autistic people experience. Autistic people tend to not “dress up” their message with flowery language, preferring instead to be more direct. On the other hand, the feedback autistic people give can be hard for parents to hear, as many parents learn that they have unintentionally caused their children harm.

We experienced many of these miscommunications and hurt feelings with each other. Thankfully, we worked through them. Using what Jules refers to in the book as “productive conflict,” we learned to listen to each other and give each other grace. Acknowledging the gray area that saturates every topic in the world of autism, we let go of our egos to problem solve together.

Today we try to be bridge-builders so that autistic children and their families might benefit from a supportive, neuro-affirming community of their own. We speak at conferences, facilitate professional development events, and continue to learn together.

What We’ve Learned Along the Way

The collaborative path is hard to navigate. It’s messy and complicated. It can even be painful when we open ourselves up to another person’s perspective and realize there may be more to the story than we originally thought.

It’s much easier to take a stand on a given topic and stick with it. That type of righteousness doesn’t require any extra energy. But it also doesn’t invite the people who we need to reach. If we can’t work together, if we alienate each other, we won’t make the progress we need to make for our children.

There are forces much more powerful at work than our grassroots support groups. Billion-dollar companies profit from the narrative that autism is a behavioral disorder or tragedy that should be corrected with intensive treatment, or that autism can be eliminated by detoxing heavy metals.

There is power in numbers, and non-autistic parents generally have more social, financial, and political capital than autistic adults. Autistic people need them in order to create a better world for autistic children. At the same time, autistic adults know what it’s like to be autistic children. Parents need them in order to create a better world for autistic children.

And that’s the whole point. To make the world a better place for our children, we need each other.

Editor’s Note: While Impact typically uses person-first language, we support authors’ use of identity-first language.