I Will Die On This Hill: Autistic Adults, Autism Parents, and the Children Who Deserve a Better World

by Meghan Ashburn

I was once an autistic child, and I know what it’s like to be an autistic child, but I didn’t know what it was like to be my mother. Not until I was a mother myself. I knew what it was like to be me, but not her. I am now an autistic adult, something my mother doesn’t know, but I now know what it is like to be her.

Most people don’t realize that there are different types of empathy. The two that are relevant in this context are emotional empathy and cognitive empathy. Emotional empathy is the type of empathy that most people think of when they hear the word. It’s the ability to understand what other people are feeling.

Cognitive empathy is the type of empathy that SBC and his colleagues were actually researching. It’s the ability to predict someone else’s thoughts without them telling you. This happens when you’re telling someone a story, and you can tell they’re getting bored by their body language, so you wrap it up.

Enter Damian Milton, an autistic researcher who created his own theory, which is known as the double empathy problem (Milton 2012). He recognized that when you put two autistic people together, autistic people no longer experience the same cognitive empathy difficulties. Autistic people create relationships, socialize, and interact with each other autistically. As it turns out, autistic people understand other autistic people just as well as allistic people understand other allistic people. Autistic people simply have their own way of interacting, relating, and empathizing.

Many autistic people are idealists. We want the world to be just, we have a strong sense of right and wrong, and we may get stuck on “This is how it should be.” So, it can be hard to switch modes to “This is how it is in this moment—and there are ways we can help change things to how we think it should be.”

The predominant worldview in America is a linear worldview, strongly tied to Abrahamic religions, which I refer to as a colonial-capitalist worldview throughout this book. Within the linear worldview, there is a hierarchy of people. Those at the top have great power, and those at the bottom are convinced they must do more, be better, and work harder in order to climb their way up. The cause is hard work, the effect is power. It doesn’t take into account any other inputs. If you are disabled, then your work is devalued, and you are denied power.

Whereas in a Relational worldview, a goal may look like: “Disabled people will be welcomed and integrated into our community, our community will ensure their needs are met, we will learn from one another, we will co-regulate when distressed, and we will live a good life together. We will appreciate the contributions of everyone and provide the support people need to live a balanced life.”

So, enter an autistic advocate, who on an unconscious level is already undermining “the dream” just by existing, because that autistic advocate is a grown-up fully autistic version of the parent’s autistic child. When we have a child it’s difficult to imagine them as an adult, particularly as an adult that we really don’t want them to turn into, so to be shown that autistic children grow up to be autistic adults who are still just as autistic can be a shock.

With the delivery of this information also comes the perception that how autistic adults communicate is incorrect. An autistic adult might deliver information which isn’t wrapped up in fluff and social niceties, which is then perceived as “rudeness” or “aggression” but really means that the person receiving the information both doesn’t like that information because it conflicts with their worldview and they don’t like how that information is being delivered—because again it reminds them that the person they are talking to is an autistic adult.

That the autistic person may speak or write seems to bring with it a certain amount of confusion which culminates in the strange conclusion that the autistic person isn’t autistic “enough,” or that somehow this tiny snapshot into their lives is enough to know how that autistic person exists all the time and is representative of the fact that they have never had any struggles at all. From an autistic person’s perspective, the frustration that the parent is unable or unwilling to listen is immense. That and the defensiveness being shown by the parent can then trigger an understandable trauma response which causes both sides to rapidly escalate.

Also, most importantly, that concepts such as “severe” autism don’t exist. That different groups are talking about autism in different ways and mostly as umbrella labels including things that are not autism and ignoring the neurological system which is. That describing us as a homogeneous group, without recognizing both the negative role of co-occurring conditions and the individuality of us all that leaves us connected through strong threads of relatable existence and shared neurological processing, is both damaging and a false economy.