PTSD, Autism, and Overcoming Our Demons From the Past

From the newsletter:

“Sir Top – Sir Topham Hatt, he’s the head of the railway!

There is no doubt about that, controller of the line!”

– Song from Thomas the Tank Engine

He’s Rolie Polie Olie

He’s small and spurt and round

And in the land of curves and curls

He’s the swellest kid around

– Theme song from Rolie Polie Olie

Those songs are a very small sample of the hundreds of children’s jingles and theme songs from PBS and Nickeleon that played constantly in our home in the early aughts. I still know those ditties by heart, and, for me at least, they remind me of cozy, snuggly times with my little guys. 

However, if those tunes should inadvertently be played anywhere near Ian, he shrieks. A Wiggles song can make a nearly six-foot tall young man, who looks like he should be pledging a frat, cower and cover his hands over his ears. He shouts “NO!” to anyone who hums those tunes anywhere near him. I can’t even say the names of Pixar’s early films — Finding Nemo, Wall-E — without an outburst from him. 

When this first started happening a few years back, we chalked up his behavior as one of those unexplainable quirks of autism. Many autistic people have unusual fears. But when we talked about it more, he explained that those songs take him back to his youth. His youth must have been a very, very bad place indeed, because he said these songs trigger graphic memories – flashbacks. It sounds a whole lot like Ian is experiencing PTSD. 

Ian’s young years were indeed rough. He couldn’t talk much until he was five, so he screamed a lot. He had all sorts of sensitivities to food textures, scratchy clothing, sunlight, loud noises, and temperature. Without guidance from a doctor or the school, I didn’t understand his issues and probably pushed him too far. He must have been miserable. 

And other times, he was exposed to “bad stuff” at school or in therapy. At 2-½, the state gave him a few hours of speech therapy per week. That therapist tried to get Ian to talk by strapping into a high chair and shouting words in his face. Later, he was in classrooms at times with kids with severe behavior issues, who punched him. While most of his teachers were kind, there were one or two bad apples, including one asshole in seventh grade who threatened to break off his fingers. 

Researchers are starting to see more connections between autism and PTSD. It may be so common an experience among people with autism that special education teachers should use trauma-informed curriculum and practices in their classrooms. (Here’s an article that I did for The Atlantic about trauma-informed education.) 

Things are a lot better for Ian now. His sensitivities are now extremely mild to non-existent. On the rare occasion that we are in loud places, he manages the situation himself with a pair of ear plugs that he keeps in his backpack. His frustrations from lack of speech are long gone, too. He’s working with a therapist to conquer these fears, so hopefully, he’ll be able to react appropriately when faced with a Pixar theme song. 

Yesterday, I ran a couple of miles with a buddy in town. Like many of my local friends, we met because her boy is on the spectrum, too. As we struggled through our “couch to 5K” workout, I told her that I was thinking about writing a short book for grandparents about autism, so they can better understand their grandkids with autism. 

My buddy said that she could never write such a book, because it would take her back to a miserable time. She said that when her kids were little, she was overwhelmed with managing 40 hours per week of ABA therapy from the state, an unhappy autistic son, a new business, and a slightly older brother. Things are much better now, she said, so there’s no point in reliving all that trauma. 

For me, those years were a mixed bag. They must have been good days, because Steve and I smile when we hear those old songs. But there’s no doubt that things sucked, too. 

At that time, Steve had just reinvented himself as a Wall Street guy, after the PhD in history turned into an albatross, so was super busy. I was still teaching college classes, while managing Ian’s complicated therapy and meltdowns, parenting an older brother, and coping with a huge lack of daycare and support. I frequently drove to the college and gave five hours of lectures with only one or two hours of sleep. 

There’s a picture of us on the porch of our house after Jonah’s First Communion, and I look so tired. Ian was three at the time and at the height of his unhappiness. I found time to cook dinner for 20 that day, too. Three years later, I was still struggling, because I had to strong arm the local church to let Ian get his First Communion. Yes, there were definitely bad times. 

My family, and families like mine, have experienced deep trauma, similar to traumas from job loss, death of a loved one, or prolonged illness. It’s a club that no one wants to join, but once here, we take care of each other. Maybe trauma is a bullshit cleanser. It helps a person get their priorities in check and put aside crap that other people think is so important, like college names and varsity jerseys. 

I guess the real challenge for Ian and for myself is what we are going to do with our traumas. Can we overcome them? Can we use those experiences to build better selves? Can trauma become our super power that helps us understand people better and helps us focus on priorities? I hope so.