Speaking With Autistic Guardian and Writer Katie Rose Visitor Pryal — THINKING PERSON’S GUIDE TO AUTISM
Autistic author, journalist, lawyer, and professor Katie Rose Guest Pryal is an invaluable autism parenting and neurodivergent self-advocacy resource, with several books plus a column at Psychology Today. We talked with Pryal about her recent and very excellent book on parenting neurodivergent kids, Your Kid Belongs Here.
Shannon Des Roches Rosa: I really want people to read your book Your Kid Belongs Here, as in addition to providing practical advice, it pushes hard for absolutely, unapologetically putting your neurodivergent kids first, and having their backs when other people try to impose unfair neurotypical expectations on them. I am grateful to you for sharing your learning journey even though you went through harrowing experiences (I was so worried about Goldeneye the cat!) in order to be able to give such sage and empathetic advice.
Balancing your children’s privacy with writing a parenting guide is especially interesting to me, as a first-wave parent blogger who has regrets—especially as my kids are adults now, and the ones who read have gone through my archives and aren’t always pleased about how they were portrayed. What do you think parents who want to write about their kids should consider?
Katie Rose Guest Pryal: Great question! In the Preface to the book, I actually give a list of rules that I follow to help me write ethically about my children. I won’t recount them all here, but I have one that I think will help most people.
Rule #1: Your kid is the hero of the story. Write only about the times your children are at their best, their most beautiful. Don’t lay out your kids’ worst moments for the world to consume. If you need to complain about your kids, pick up the phone and call a friend—we all need support, and there is nothing wrong with that. But those complaints should stay private. In your writing, let your love and admiration for your kids shine through. If your love and admiration don’t shine through, do not write about your kids.
I think that if most parent-authors keep that rule in mind, they will be fine. I say more in the Preface, about protecting your kid’s identity and so forth, but if you are careful to only portray your kid as the hero—even if that hero is facing challenges, such as structural or societal problems—you will be starting in a good place.
Rosa: I appreciate your statement “I do think it’s harder to relate to your kid’s disabled experience when you aren’t disabled yourself,” as many parents, like you, do not realize they are autistic or neurodivergent before their kids are diagnosed (and indeed, many still never find out). How did having an autism diagnosis rework your understanding of your kids’ experiences, as well as of your own?
Pryal: Unlike a lot of late-diagnosed autistic adults, I was actually diagnosed with some neurodivergences when I was young: ADHD in first grade, and then bipolar disorder when I was twenty. So, I spent many decades already knowing that I was different. Then, when I entered academia, my area of research was disability studies, specializing in neurodiversity.
Your Kid Belongs Here
When my kids came along, they just seemed like little versions of myself. When they started school, suddenly their—and my own—differences became more apparent. In part this happened because they were around other kids beyond our extended family, and in part because some of their teachers complained about them (a lot). Those complaints were so painful to receive. Fortunately, I had the theoretical knowledge, and life experience, to know that the complaints didn’t mean my kids had to change. They were bumping up against institutional norms that didn’t allow for neurodiversity.
When all three of us were diagnosed with autism (within one year of each other), it wasn’t even a surprise at that point. I knew enough about autism to know that ADHD didn’t explain what we were experiencing.
Now, my life did change when I was diagnosed—mostly because I have learned so much about how I mask, how I spent my life ignoring my needs (and how I was taught to ignore my needs), and more. My work unmasking myself is a work in progress, but it has definitely made my life better. And of course I can make sure that my kids can understand that they never have to.
Rosa: Bullying happens more to autistic and neurodivergent kids than to their peers, and you write that it is also different than it is for non-autistic kids. Can you talk about some specific ways in which ND kids are affected by bullying, and ways in which parents can be both vigilant and supportive?
Pryal: The first thing that people need to understand is the purpose of bullying, which is to gain dominance and social status. Because an imbalance of power is inherent in bullying, bullies target certain kids because they know that they have more power over those victims. Bullies also tend to have strong social skills.
Now, if you lay that description of bullies and bullying alongside what we know about our autistic kids, friends, and selves, it’s apparent that we would be targets for bullies. Bullies rely on strong social skills and charisma to gain power and target those who lack that same power. Autistic kids tend to struggle with social skills (not all of us, of course, but many of us). Reading social cues, understanding jokes, and so forth—that was never my strong suit.
Autistic kids are chronically bullied. And if they are bullied once, then they are almost certain to be bullied again. If your kid tells you they’re being bullied, no matter what the teacher, camp counselor, or coach tells you, believe your kid. If you witness bullying, even if they don’t understand it, intervene.
Katie Rose Guest Pryal
The way I’ve intervened with my children was two-fold. I found them an excellent counselor to speak with every week (and they still see her today), and I let her teach me how to help them. I was a victim of brutal bullying, and I didn’t know how to raise a kid with the skills to manage bullies. She taught me about “tricky people,” those who appear friendly but aren’t. How to tell who a real friend is, and what they make you feel like inside. How they treat you. That they listen to your stories and want to share their stories with you.
I also have worked hard to raise my kids to understand that they are truly incredible people. I’m being honest with them, obviously, because I do believe that about them, but I was careful to constantly tell them. To make sure that they didn’t need to change to be accepted and loved. That sort of transactional approach to love was something a lot of people of my generation were raised with—make perfect grades, more love. Behave properly at holiday dinner, more love. My kids know that the love is unconditional, and from there we can talk about the details.
Because anything less than the unconditional love we have for our autistic kids is just details.
Rosa: You emphasized how important it is for others to recognize and encourage autistic passions or special interests. What are some specific benefits in doing this?
Pryal: Too frequently, autistic kids are either mocked for their special interests, or they are encouraged (forced) to diversify. The thing is, our autistic special interests become the things that make us great. It took me decades to get to the place where my special interests were something that I allowed myself and encouraged.
Special interests also keep us feeling safe and regulated. When one of my kids is stressed, I encourage him to go do a thing he loves. Special interests are also an incredible way for our autistic people to make friends. In my next book, a literary memoir about horses and autism (horses were, and are, one of my special interests), I talk about how you can put two horse people in a room together and we will never run out of things to talk about. We share a language. In this way, special interests become a way to make authentic friends.
