I was recently browsing the various therapist groups on Facebook, looking (as I often am) for resources about neurodiversity-affirming care for my clients. Several colleagues were talking about I Will Die On This Hill, a book created to help parents of autistic children best support and raise their kids. Since autism has a genetic component, many parents of autistic children are also autistic (whether they are aware of it or not). Both autistic and non-autistic parents struggle to best parent their children, whose brains were not built for the way society is structured.
Seeing a resource created to help parents navigate their children’s diagnosis in an affirming way is amazing! I reached out to Jules and Meghan and honestly was surprised when they responded that they wanted to talk to me (yay imposter syndrome!). I so appreciate both of them taking time out of their day for this discussion. I am still working on getting my copy of I Will Die On This Hill (yay record-breaking snowfall screwing up our mail!), but they shared their experience of creating this awesome resource.
Our conversation covered a lot of ground, partially because these two are fascinating people I could listen to forever and partially because we put three ADHD people in a room together, and that is what tends to happen. This post ended up being just a snapshot of everything we dug into, and I hope we can all chat again soon.
Jules Edwards is an autistic parent of an autistic child and writer. They are also on the board for the Autistic Women and Nonbinary Network. They shared that they are working on creating a more accurate and affirming self-report measure for assessing for autism, which I am very excited to use in my practice once it becomes available.
Meghan Ashburn is a parent of autistic kids with a background in education. She has a reading list for parents whose child was recently diagnosed as autistic, does educational consulting, and works to connect parents of autistic kids to appropriate resources.
Meghan and Jules’s kids were diagnosed autistic around the same time, and Jules began following Meghan’s blog for resources. They ended up connecting when Jules gave Meghan feedback about writing about her children, and they realized that they were given different resources: Jules received resources for someone diagnosed as autistic, and Meghan was given parenting resources. Meghan didn’t realize that she was also following Jules’s blog at the same time. (Side note—I love the idea of connecting with one of my Pocket Friends about a shared interest and writing an entire book from that! Maybe someday….)
Meghan shared, “Parents want to help their kids, and all they’re given is ABA or the 100 Day Kit. … They’re not given first-person resources; do you know what I mean? They’re not being ushered to the autistic community.” She runs into the same issue with teachers, who are not given resources or tools to support students, determine unmet needs, or meet students where they are.
When her child was diagnosed, Meghan had a “diagnose and dump” experience where she was not given resources, and she found herself digging into the research herself. Jules noted that medical doctors are tasked with identifying “red flags” (and they asked me to make sure I put that in quotations) and make referrals for evaluations, without receiving adequate tools or training to provide support and resources to families.
Jules and Meghan are both parents of BIPOC children and found the additional struggle of navigating resources written by and for white individuals and families. Their book is a step in the direction of filling a major cultural competency gap in the existing resources.
I Will Die On This Hill is “so many things to so many people,” aimed at helping not only parents of autistic kids, but also providers, professionals, educators, or anyone who wants to learn more about autism and the history of diagnosing and supporting autistic people. While they are the two authors, they consulted many contributors in writing their books, including nonspeaking autistic people, AAC users, Black autistic people, and trans autistic people.
One thing we discussed in our conversation is autistic burnout, which only recently began being recognized and addressed. Even when it is addressed, though, Jules pointed out that the emphasis is on getting the individual to “bounce back” and become productive again as soon as possible. They shared, “Being autistic is being expected to repeat my best day every day. … You’re a machine, and they treat us like we’re expected to be machines.” Meghan noted that, because her children were born prematurely, she believes they were in burnout as soon as they came home from the hospital.
The book is not intended as advice, but rather to share stories of autistic experiences. Meghan said, “It’s not really an advice book.” Jules noted that, from her Native culture, she shares “advice” by sharing a story and letting people take what they need from that story. She wants people to take the information and apply it to what is best for their own family.
We discussed the importance of having a plan if a child has periods of dysregulation or aggression, though the plan needs to ensure the child’s safety. Unfortunately, law enforcement is often unhelpful or even dangerous in the event of a mental health crisis. Many autistic people have died as a result of law enforcement escalating the issue rather than assessing and bringing the situation down. Autistic people who are overstimulated or experiencing a meltdown struggle to follow instructions and self-regulate. Police violence is particularly a risk for Black, Indigenous, and Brown autistic people.
This risk is not mitigated with police training: Jules shared, “Pre-assault indicators are basically autistic traits, and there’s no actual science behind it, but they use that to decide.” Keeping a “registry” of autistic people in the community for the police to be aware can actually cause further escalation because of bias and stigma around the diagnosis.
Meghan pointed out that certain autism “awareness” groups focus on “behavior management” and reducing the “danger” posed by autistic people, which again further perpetuates stigma and puts these individuals at risk for violence. For Black autistic people, the already increased risk for police violence is exacerbated even more.
With limited non-police resources, especially in rural areas, this leaves many hanging with nowhere to turn for support safely. We need funding reallocated from law enforcement to affirming, disability justice-oriented resources. The issues surrounding disability justice are twofold: parents do not receive adequate resources, and the systems in place perpetuate oppression. When ableism intersects with racism, transphobia, and homophobia, these dangers increase. I will leave you with Jules’s thought: “When we meet the needs of the people who are most oppressed, everybody benefits.”