This is a book review for I Will Die On This Hill by Meghan Ashburn and Jules Edwards, which is set to come out on January 19th, 2023. This book talks about autism from a myriad of perspectives: autistic people, non-autistic parents of autistic people, autistic parents of autistic people, etc. There are also many other autistic people who contribute chapters to this book as well.
One of the most important messages of I Will Die On This Hill is that no one person is infallible or knows everything in the world. That’s a really important point when it comes to the autistic and autism community. This book helps with seeing both perspectives, from parents of autistic children to autistic adults who try to help parents.
I think the biggest theme of all that runs throughout this book is what misinformation can do to parents of autistic people, and autistic people themselves. This book shows very clearly how much pressure parents are under in general, and adding two tons of misinformation about autism on top of that [have you googled “autism” lately?] makes it impossible to figure out how to successfully support an autistic person, or even yourself. It’s about autism professionals’ dismissal of the innate instincts of parents to protect their kids from trauma. It’s about how parents’ concerns and gut feelings are dismissed because professionals continue to push the “gold standard treatment” of forcing autistic kids to mask and hide their distress. It’s about the continual dismissal of parents even when they are armed with information about co-occurring conditions and other supports their autistic kid may need.
I think the objective at the very core of this book is to let everyone know that we are all human beings who have all made mistakes before, who are all trying to do their best for themselves and others. That professionals are not infallible, and that even misinformation can lead an autistic parent of autistic kids to spout ableist ideas without realizing any of it. We are in a racist, sexist, patriarchal white supremacist system, and existing within that system affects us all. This book does a very good job of tying all of these ideas together.
The authors give a glimpse of parents who love their child, who are desperate to support them in any way they can, and who don’t have the information or the resources they need to do that. There is a sea of misinformation on autism, and both parents of autistic kids and autistic people themselves are drowning in it. It’s really refreshing to see personal experiences not just from parents of autistic kids, but autistic parents of autistic kids, who are centered in this book, and how misinformation also harms autistic parents and their autistic kids. Unfortunately, there are very few resources for autistic parents and how to navigate getting supports for their kid.
There is also the perspective of autistic adults, trauma, and making life better for future generations of autistic people. Jules Edwards mentions hating incremental change and talks about what incremental change looks like as an autistic advocate. Personally, as someone who got a lot of disagreement after publicly posting about what happened on Color the Spectrum (where a lot of things happened behind the scenes that I couldn’t talk about for many important reasons), I absolutely understand this perspective. A lot of other autistic advocates and I brought about change which involved a large organization awarding $1 million to autistic-led organizations, and even more important than that, actual autistic adult representation that millions of people watched. That still feels incremental to me, but in the grand scheme of our community, I found it to be a big win considering what we’re up against.
At the same time, so many autistic people were not happy with this strategy, and I want to reiterate that I wasn’t happy either. In fact, I don’t think any of us were. It was simply the only way, we believed, to create some sort of progress within our community. In fact, I could say it made most of our lives miserable for a month. It’s honestly not something I ever want to experience again. Incremental change isn’t fun or exciting – it’s often tedious and frustrating. This book does a good job of explaining that.
This book also explains how autistic adults may feel when interacting with misinformed and defensive parents. You know, trying to make change hurts. It hurts to witness the dehumanization of autistic people. It hurts to see parents and caregivers abusing their children to try to “cure” them. Autistic advocacy is not sunshine and roses – it is constantly being reminded of what position you are in in this world, that people would rather you not exist at all than to exist in this world as how you actually are – autistic. It’s absorbing the pain, isolation, gaslighting, and othering from the stories that other autistic people tell you about their lives. It is trying to make peace with how wrong the world is while making just a dot of change here or there, when you know that’s not going to be enough. It is difficult watching parents be preyed on by biomedical companies and ABA therapists, only spurred on by the love for their kid, not realizing the trauma that person will have to comes to terms with 20 years later – trauma that I’ve seen first hand in other autistic adults.
This book helps reconcile a lot of these feelings I have about where I am and what I’m doing. It really lays out these ideas clearly for parents who may be just starting to learn about autism, who may have just gotten an autism diagnosis for their kid, and who may not know they are autistic themselves.
I highly recommend this book for anyone who wants to understand how misinformation can separate groups within the autism community. I hope by reading this book, they realize that what we all need to fight is misinformation about autistic people and the system that we live in.
I will warn you that it’s not an easy read. Note that the authors do say up front that you may want to throw this book across the room while you’re reading it, and I think they’re right about that. I would say that it’s still very much worth the read. Read at your own pace and your own time, mull things over and then come back to it, or write notes while you’re reading it. It will make you a better parent and/or a better advocate – whether autistic or not.
“Meeting our children where they are doesn’t mean giving up on them. It means seeing them as a whole person, broadening their access to communication, helping them figuring out their unique learning styles, helping them figuring out their sensory profile, and putting accommodations in place. When we work with our children instead of against them, instead of trying to fix them, we end up with happier children. And that is a goal worth striving for.”Meghan Ashburn, I Will Die On This Hill