It’s amazing how sometimes a very brief bit of writing can impact you deeply and leave you thinking about it for weeks after the fact. This happened to me recently after reading a blog post by Ariane Zurcher, over at Emma’s Hope Book. In “Trauma & Autism” Ariane calls for understanding the way autistic people respond to trauma, and highlights how many of the ways we treat autistic people can traumatize them in ways that are often overlooked.
Throughout the piece, she includes clinical research on how trauma can impact autistic people differently, but intersperses this with examples and speculations from her own and her daughter’s life. Some these examples hit very close to home. For example, she writes:
“What about the time when the ABA therapist locked Emma, who was only three years old, in her room for 30 minutes, instructing me to stay out or he would pull all our services, while she screamed and begged to be let out? I know how traumatized I was and continue to be because of those 30 minutes, what about Emma’s experience? Did this cause untold damage? Did Emma experience the degree of trauma that I did? Is her experience even more profound? What about how she experienced her own mother not saving her from such a person? How has she integrated these events into her life experience? Is it felt as the ultimate betrayal? How will it manifest in the future?”
This prompted very similar, very vivid memories from my own life – except in my case, it was not some stranger or therapist who was involved. It was my own father. This was his most common method of dealing with my meltdowns. I don't know where he got the idea – I imagine it was someone's "expert opinion" — but the results were not optimal. Unfortunately, what that advice failed to recognize, was that meltdowns and tantrums are different things.
Tantrums are shows of anger
and emotion that are designed for an audience
— to get a specific response. Meltdowns are the result of an overload that a person's neurological system cannot process effectively. They are, in short, a response to pain – just not necessarily physical pain. But no one back then had a sense that this was what was going on.
Assuming that these meltdowns were tantrums, my father was told not to “reward” the tantrum. Thus, when a meltdown got out of control and he could no longer manage me, he would confine me to his bedroom and lock the door behind me. But this did nothing but worsen the situation, as there was no “reward” to be had. I was overloaded, plain and simple – and would have had the meltdown regardless.
I remember vividly my feelings in those moments. The feeling of unbearable pressure inside. The fear and confusion. The knowledge that my behavior was somehow causing a problem, but feeling utterly helpless to manage it. I didn’t know why I felt the way I did, and I wanted to stop it just as much as anyone else, but I didn’t know how. I couldn’t understand why no-one would help me, and why my pain was being ignored.
As is still true today, that level of overload made it nearly impossible to communicate any of this. I would have no idea what I was saying at a given moment. The overwhelming frustration, and my inability to communicate it, only escalated the situation. I would wind up screaming for hours, pounding on the door and punching the pillows. Eventually, I'd exhaust myself and fall asleep. I'd be down for the count for the rest of the day.
Can I say that these experiences traumatized me? That's a really tough question for me to answer. Since those days I've had a lot more difficult things happen to me, so in some senses it's a matter of degree. Can I say that it's a positive memory? Absolutely not. But does it compare with memories I have of being hit by a car or other more traditionally traumatizing events like that? I'm not sure that I can say that it does.
I know that these events created enough of that trauma within me that I told my mother about them, years later (she and my father had been separated at the time these incidents occurred, thus she hadn’t witnessed them firsthand). She was quite shocked to hear about it. She asked me why I never told her about it at the time. And, well, that's also another difficult thing for me to explain.
It was only years later when I began reading about autism
that I came close to an explanation. In a book by Dr. Uta Frith
, she described three subtypes of social interaction in autistic people: “aloof,” “passive,” and “active but odd.” Although I took issue with some of the other concepts she presented (such as the concept that we “lack empathy”
), I found the concept of these subtypes useful in thinking about my past. I have been all three of these at different times in my life, but the times when I've been passive are the times in my life that, in retrospect, have been the most problematic.
During much of my early childhood, it did not occur to me that changing my environment or how other people related to me was an option. I'm not sure why this is. Did I discount communication as an option because so many people did not recognize my attempts to do so or decode those efforts effectively? I suppose it's not at all surprising that if you try to communicate your needs, and it has no effect, you would eventually stop trying, branding these efforts as ineffective.
Unfortunately, if you don’t learn to communicate your needs, you also don’t learn to set boundaries. When I think about my memories of those days, I feel less traumatized and angry, than sad. I view those meltdowns as opportunities lost. Opportunities where I could have learned the skills I needed to identify and advocate for my own needs. Instead, I learned to disregard my own internal barometer for discomfort and pain and that other people’s ideas of appropriateness were more important than my own needs. This opened me to many different dangers.
What happens, for example, when you reach puberty and sex becomes part of the social milieu, a topic Shannon Des Roches Rosa covered recently on Blogher? Fortunately for me, this is a topic my mother took very, very seriously and approached with directness and candor. From a young age she told me very clearly that no one had the right to touch my body in any way that I did not agree with. “It's your body,” she would say, “not theirs.” Although in my adolescence, there were times that her directness was embarrassing to me, today I'm deeply grateful for it. I recognize all too clearly what could have happened had she not taken that tact with me.
Even with that approach, when I re-examine my past, I am chilled by many of the experiences I now see through a new lens. Near-misses that frighten me. As I've written before, I've kept journals for most my life. As part of processing what autism means in my life, I've re-read many of them. One afternoon, I was reading some of my journals from high school, I read an entry that took my breath away.
It was an account of joining some of my classmates for an “all nighter,” decorating the float for our homecoming parade. The account included the typical behavior you'd expect from high schoolers -- chatting and gossiping, and even a little bit of mischief. But in the midst of these was something disturbing.
I don't clearly recall the event described, but I remember the two young men involved. One was a young man who found me annoying, and another was one that, at the time, I considered a friend and whom I suspect had a bit of a crush on me. It seems somewhere during the evening, the first young man, whom I’ll call K., became annoyed with me, and the result was the following:
“K. taped my wrists and ankles together with duct tape. R. removed it for me. (Some of it. K. helped get the piece that covered my mouth out of my hair.)”
Reading this as an adult, I can only shake my head, but in my teenage mind it was treated as no big deal. Knowing the first young man’s feelings toward me, I imagine his intentions were only to silence me, but today I cannot dismiss what could have happened had his intentions been different, or had the other young man not intervened. Or, for that matter, what about the intentions of the other males present? What might have happened to me while I was effectively bound and gagged and unable to defend myself? Why did I not say no? Why did I think this was OK?
Because I had learned to look to others for what was considered socially appropriate, even if it was painful or uncomfortable to me. My peers tolerated this behavior and thought it was OK, and I took their lead. This was the product of years of being indirectly taught to discount my own pain and discomfort in a given situation if it conflicted other peoples’ opinions of social propriety. Sadly enough, this is not the only example that comes to mind. This dynamic occurred and re-occurred well into adulthood.
I often wonder if I might have fared better in this area, had I had a diagnosis in childhood…but unfortunately the accounts of many of those who have had diagnoses don’t seem to diverge that much from mine. In fact, when a diagnosis is involved, it seems that the dynamic is often worsened, because attempts to calm ourselves or express pain, discomfort, or trauma are labeled as “behaviors” and are targeted for elimination instead of the causes of the trauma itself.
Ariane wrote in her post:
“It is tragic that the very methods a traumatized Autistic person may use to calm themselves from the trauma they’ve experienced, are often the very things those who are not Autistic pinpoint as ‘behaviors’ or actions that must be stopped. Not only is the person trying as best they can to deal with the initial traumatic event(s), but they are often being punished and told to stop using the only ways they know of that actually help them cope, thus creating further trauma.”
It’s crucially important, especially in the formative years, that parents and caregivers learn to identify pain and discomfort, even if it’s expressed in an atypical fashion – and support the right of the person in pain to express that pain. In instances where their methods of expression are harmful to themselves or others, then it’s important to help them find methods to express themselves that do not. Suppression is not an effective coping technique.
It’s impossible to effectively self-advocate, if you can’t say “No.”
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