Your Autistic Child is a Square Peg, and That’s Alright

Consider the words of autistic author Paul Collins: “Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.” 

Right before we decided to get a full neuropsychological evaluation for Evie, I told her psychiatrist that I felt like we were jamming a square peg into a round hole, and I was starting to feel like we needed to stop jamming and make a square hole. Nothing we were doing was working. None of the parenting strategies and typical behavioral modification programs were working. While her medications did resolve her psychiatric symptoms, they were not coming close to touching some of her most perplexing behaviors. We were missing something. I sensed, very acutely, that the round hole was not a good fit for our Evie girl. Not too long after that, we received her formal ASD diagnosis and I began doing the work to make a square hole for her in our lives, in our home, in our schedules, in our friendships, in her education, in her routines. I stopped trying to change her, and I began the hard work of changing myself and my expectations.

I’ll admit that at first this concession that we needed a square hole felt like a defeat because I had always seen her square edges as things to overcome. Instead of seeing the changes that had to be made as opportunities to love and support who Evie fundamentally was, it all felt like a concession to her “illness”. It seemed to me that creating a square shaped hole in our lives was equivalent to “giving in” and letting it control our lives. While I still have remnants of feeling like autism has stolen the life I thought I wanted to live, I no longer see the accommodations and supports I offer to Evie as concessions to “illness”, but rather as a respect for who she is. Now, as I whittle away at this square shaped hole, I know that I am creating safety and opportunity for my little square peg. I am carving out a place for her to be herself, and to become herself.

I would not have made that journey nearly as quickly without Uniquely Human: A Different Way of Seeing Autism, by Dr. Barry M. Prizant. This book was a a gift. A profound gift. It validated the acute sense that I was unnecessarily trying to hammer Evie into an ill-fitting round hole and then proceeded to give blueprints for the rightshaped hole, all while respecting the individuality and personhood of each autistic person. Knowing that Evie’s brain works very differently from mine at a fundamental level taught me to seek to understand her perspective and experience instead of focusing solely on her behavior. I made a shift from seeing all of her difficult behaviors as deficits to overcome to seeing them as manifestations of her very different (neurodivergent) perspective and experience of the world around her. In short, it taught me to ditch the reward charts and start to ask the question *why* (admittedly, sometimes it comes out more like “WHY?!?!?!?!?!?!?!?!”, but ya know, it’s what you said not how you said it… or something like that).

Evie doesn’t always know why she’s doing what she’s doing, so the “why” is often difficult to discern just by watching or talking to her. This obstacle is predicted in the book, so Dr. Barry says that “although each person is an individual with her own reactions and experiences, in order to answer ‘Why?’ and learn how to be of assistance, it’s helpful to listen to what autistic people say about similar behavioral patterns they experience and what’s the most helpful response.” (18).

So the drip this week: LISTEN. Listen to autistic people, and believe them. Read books by them, follow accounts moderated by them (this is your sign to go follow @toren.wolf on instagram!), if you know an autistic person who is open to sharing their perspective and experience, ask them questions. If you are neurotypical, educate yourself. As Chilli tells Bluey, “you’ve got to find your ears”. In opening myself to the voices of courageous autistic individuals, I feel like I am getting to know my daughter, in some ways, for the first time. So many things are clicking into place, and I’m seeing her for the little person she is instead of as the sum of her complicated and disruptive behaviors. I’m more focused on her instead of the round hole I’ve been trying to get her into. I’ve learned that I cannot assume I understand— my typical brain simply cannot come up with the reasons behind the behaviors because there are very real, very fundamental neurological differences between her and I. Unless I listen, I cannot see the world through her eyes. This is incredibly frustrating at times. If you are in relationship with someone on the spectrum– a child, a spouse, a sibling, a parent, a friend– it takes work to slow down, to ask why, and to listen. And it takes work to “enter in” to their perspective, seeking simply to understand them and not shape them. This is perhaps even more difficult with a person you know and love who has been diagnosed as an adult (not that I have any experience with that or anything…). It’s a painfully slow process. It’s a confusing process that will test your patience and maybe even your salvation. Honestly, right now the word I want to use to describe the process is “agonizing”. Don’t go it alone. If your loved one cannot express themselves, turn to the generous, courageous voices of other autistic people. This requires humility, it requires the willingness to admit ignorance, it requires you to accommodate things that you don’t understand, it requires cognitive flexibility, it requires letting go of long held paradigms and principles. But it is also loving, it is compassionate, and this is how we emulate Christ as Paul calls us to do in Philippians 2:3-4: Do nothing from selfish ambition or conceit, but in humility count others more significant than yourselves. 4 Let each of you look not only to his own interests, but also to the interests of others.

[As a brief aside: In the first drip I said prevention of difficult and dangerous behavior is the biggest piece of the puzzle— I think that the above principles are an important foundation to prevention. Next week’s “drip” will speak more to this, but for now it’s worth pointing out that this post is not to say that there is never any room for behavior modification. The intention is to, first, take a step back and ask whether or not the modification is truly necessary or simply preferential, and second, to say that when there is behavior that needs to change (e.g. verbal or physical aggression) we need to understand the person underneath in order to provide the right tools for them to behave safely and in compliance with God’s way.]

We aren’t all round pegs. I’ve spent so much time wearing myself out trying to mold her into what is considered “typical” or “acceptable”. And exponentially worse than that, I have risked significant damage to the unique, carefully designed masterpiece I have been entrusted by God to care for. “Raise up a child in the way he should go, so that when he is old he will look just like everyone else…” Nope, that’s not what it says. I will raise Evie to be Evie, the unique Evie God created, to glorify and enjoy Him forever. I am training myself to ask “is this a sin issue or is this a neurotypical issue?” I will learn to differentiate the two— committing to providing her with the tools she needs to follow God’s commands for the former, and letting her be herself for the latter. I will come along side her as she learns about herself, but more importantly I will teach her about the One who made her, the One who became an outsider so that she would always have a place to belong, the One who died to be able to offer her an eternal home in a place where the diversity of God’s creation in humanity is celebrated instead of shunned. As I shift my focus, I am now committed to raising her not to fit in, not to be neurotypical, but to be NeuroRadiant. I can’t do this without listening to autistic people (including Evie), believing autistic people (including Evie), and humbly admitting that my way of seeing and doing things isn’t the only way.

I’ll drop some of the autistic voices I have come to love and trust in the comments, and I’d love if you did too!

Xoxo,

Em