Healing Invisible Wounds: Understanding Complex Trauma in Nonspeaking Autistic Individuals
My son gets so aggressive and I don’t know why. It seems like nothing sparks these outbursts.
My daughter will scratch me and pull my hair. She’s perfectly happy one minute and melting down the next. She’s fluent on the letterboard but I can’t get her to tell me how to make it better so she’ll stop.
I bet we’ve all heard or read comments like these. Maybe we've even made them.
And this community for the most part does a really good job understanding that dysregulation isn’t volitional and minds and bodies are often disconnected.
What we miss sometimes is that just because someone has developed the ability to communicate reliably they don’t necessarily have the all the answers.
We all are shaped by our environments - neurotypical or neurodivergent - and develop near-instinctual habits or coping mechanisms in response to perceived threat.
If, as a child, you were frequently belittled and rejected, you may detach from emotional relationships. If you lived in a situation where your parents’ love felt conditional, you may doubt your partner’s commitment and need frequent reassurance of their feelings towards you.
While some people engage in therapy and seek to understand the connections between their actions and their emotional triggers, not many people do. And these are neurotypical people or people who have had access to a reliable form of communication their entire lives.
Now imagine having YEARS of life experiences that shaped your perceptions of yourself and your responses to your environment and never having even the opportunity to discuss any of it because you didn’t have a way to communicate reliably.
In her book What My Bones Know, Stephanie Foo writes about her experiences understanding and healing from the complex trauma of childhood neglect and abuse. Regular PTSD, she says, stems from a single event - kind of like a car crash. Maybe you were walking, about to cross the street, and a bus slammed into a car, killing the driver. Witnessing this single event would likely cause your brain to encode the entire environment where the crash occurred - the model of the car, the bus color, the donut shop on the corner. Later in life you may find yourself feeling on edge in a Krispy Kreme and not even realize it’s your brain’s deep-seated response to the activation of the perceived threat.
Complex PTSD is kind of like witnessing that car crash every day for a year. “The difference between PTSD and complex PTSD is that complex PTSD sort of has the potential to have a constant fear sort of churning underneath the surface. And I think it always had me on edge, hypervigilant, made it really hard for me to trust people,” Foo told NPR.
Foo’s memoir is 350 pages of her attempt to understand how the complex trauma of her childhood impacts the things she does, the way she feels, and the coping mechanisms she can’t shed, even though the actual threat is no longer present.
Foo is a college graduate. She’s a former award-winning radio producer of This American Life. She looks, on the surface, like someone who has their ish together. She has engaged in decades of therapy and is still a work in progress.
Have you stopped to think about the complex trauma that almost certainly exists within every speller you know?
I’m not even talking about individuals who were abused as children - although certainly some were and most horrifically likely had no ability to tell anyone it was happening.
I’m talking about every single speller who ever heard their teachers, doctors, and even families talk about them in front of them, saying things that weren’t true. Saying they’re intellectually disabled. Incapable of understanding or expressing love. Master manipulators of the people around them, only out to meet their selfish desires. Incompetent. Incapable. A danger. A burden.
All this. With no way to talk about it.
I’m not writing this to shame anyone, to suggest that folks should have done things differently. We don’t know what we don’t know.
I’m writing this to bring the idea of the complexity of the trauma our spellers have experienced to light and advocate for more understanding and grace when they may not be able to explain to the people around them why they do some of the things they do.
Maybe that OCD routine has a root in something they’re not even aware of.
Maybe that impulse to bite their hand or bang their head is a coping mechanism so deeply ingrained in their brains that they’ve lost the original trigger.
As students develop the ability to communicate openly with more partners than just immediate family, why not seek out a therapist who can help them understand and begin to process the complexity of the trauma they’ve experienced?
As a community, we’ve shifted our understanding of our nonspeaking students’ intelligence and educational needs, but have we stopped to consider how we may need to do the same for their mental and emotional health?
But why take my word as a neurotypical, speaking person when you can hear directly from a speller about their own lived experience? My brave and insightful student Trevor takes over this post from here.
Not many people find the depth of understanding of their minds and emotions that I have with Lisa as a CP and my brilliant therapist who I’ll call Amy.
I’ve been in therapy for a few years now. It has quite literally saved my life. I’m not ready to say more at this time but about a year ago I tried to end my life.
What has followed has been a year of asking my family to dive into my life, beginning from before I was born so I can really engage with my past. My past is too common among spellers. Years of no communication. Struggles with self-harm. Hated times of aggression including inpatient time at a behavioral unit. Can you imagine coming to and realizing you punched glass and have no recollection? How about going to a school where everyone assumes you are dumb and violent?
Can you tell me there’s no complex trauma in that?
I’m only starting to understand how all these things show up in my thoughts and actions. And that’s with a crap ton of therapy. Why do we expect someone to be able to tell us why they do what they do with no therapeutic support?
Lisa is the Executive Director of Reach Every Voice, where she spends each day unlearning what she thought she knew about autism as her students share their lived experiences.
Trevor found their voice on a letterboard at age 15 and has no plans to shut up. Trev is currently writing a memoir and serves as an appointee to the Maryland Department of Disabilities' Advisory Stakeholder Group on Autism-Related Needs.
Want to read more of Trevor's writing? You can find their stuff here on the REV blog and also at NeuroClastic.
Want to leave Trevor a tip to support this work? You can donate via this Ko-Fi page
