When I read explorations of many possible dynamics that may have caused the increases in the rates of autism diagnosis (like John Elder Robison's most recent post), I am pleased to see the diversity of causal factors considered. But there is one dynamic that I have yet to see covered, and it's one that's very personal for me. It's the legacy of parent blame.
Regular readers here will remember that I've referenced the movie "Refrigerator Mothers" several times of over the past couple of years. There's a reason for that. This movie had a profound affect on me, changing how I viewed many issues, including my own past.
Much of the early material I read on autism glossed over this aspect of the history of autism... some not even mentioning the Bettelheim era at all. Others simply included a sentence or two about how practitioners "proposed that interpersonal psychodynamic factors resulted in autism, and thus for awhile deflected attention away from the biological causes." And, nearly every source that did mention it placed it far in the past—a phenomenon of the 50s and 60s.
Then, while watching the movie, I heard the story of Maria Mombille and her son Shem, who was born in 1975. As the experts didn't seem to notice his differences, Shem had gone undiagnosed. The impetus for his diagnosis came when his autistic traits were noticed not by a doctor, but by his Grandmother, who had only a high school education.
As he got older, Maria sought treatment for her son, only to have him taken away from her as part of the treatment: "When Shemmy was around nine, the only school that was open, the principal had been a devout disciple of Bruno Bettelheim, so he said to me, 'Families are the worst possible place for a human being to grow up, therefore we try to remove children from their parents as part of the therapeutic treatment.' And by golly, that's exactly what they did. For two years we could not see Shem. That was the most painful experience in my life."
Do the math, and this means that Shem was being treated under the "Refrigerator Mother" psychoanalytic model as late as 1986! So much for the thought that the hypothesis that parents caused autism was a 50s and 60s thing... in fact, the mother who produced the film was prompted to do so by an incident of mother blame she experienced in the 1990s.
Now, if this was the case... if the mindsets described by Maria Mombille, and the other mothers in the film, didn't just die in the handful of years after Bernard Rimland debunked them in his 1964 book , then how much of these attitudes might have been hanging around during my childhood, I wondered? As I listened to the stories of the women interviewed, so much of what I heard resonated with me. As I've written before, when I was in first grade, I had my own painful encounter with the psychiatric profession.
My teacher had become troubled by my compulsions and socially inappropriate behavior, and had become convinced that it was as a result of abuse. She reported her suspicions to the authorities, leading to an investigation that left me scarred for years. It had begun simply enough—I was invited to the Principal's office, where they introduced me to two adults.
They offered to take me out for ice cream. I thought this was cool! After all, how often does a first grader get the chance to skip school for a trip to the ice cream parlor? It seemed their only price for this was my company. But I would soon learn there were deeper things going on.
I don't remember what they asked me, or what I answered. It's something I've always wondered... but in the end, I was just a kid with an ice cream cone. I was more intent on eating it than I was on being careful about what I said, I had no idea that I would need to be. Whatever transpired, it was enough to prompt them to order a full scale investigation. The courts assigned a psychiatrist to my case, and required a series of mandatory evaluation sessions.
My parents did their best to hide their distress from me, but something like that isn't easily hidden... and their worry was palpable. I entered the first session already angry, and that wasn't made any better by the string of questions the doctor fired at me one after another. Questions that made me squirm. That used words that I wasn't familiar with, that filled me with shame and embarrassment. That somehow, someway, felt like they had some terrible purpose.
I became more and more anxious fearful with each session, and no matter how many times I answered this man's questions in the negative, he kept asking them, over and over. Emotionally, I shut down by degrees. What started as single sentence answers, gradually became one-word answers, then, finally, no words at all. I saw him as the enemy.
Eventually, wearying of trying to talk to a child who refused to respond, our final sessions degenerated into nearly-silent sessions of Chutes and Ladders, a game I hated, but hated less than the rest of his collection. At the end of it all, he informed my parents that I showed "signs of being abused" but he couldn't find evidence of physical abuse, so I "must've been emotionally abused." With this wishy washy report, the court had no choice to back down, there was no smoking gun—but it wasn't the exoneration that my parents were looking for. They were already estranged from each other, and the firestorm of finger-pointing did nothing to help their relationship.
Interestingly enough, in the wake of this they chose to get back together—something that surprised me... and something that they spoke with me little about. In later years, I when I would ask my mother why, she'd close up and answer only, "I did it for you." Of course, looking back I had to wonder what role the investigation had to play in this. Had the good doctor sown a seed of suspicion? Was she trying to protect me? I don't know, and don't know I ever will. To this day, it's a subject not easily broached. Not surprisingly, the reconciliation didn't last long... nothing like the fear that your spouse might secretly be a child abuser to successfully steal a relationship.
I was left feeling I was responsible, and was deeply ashamed. I learned to question my own perceptions, my own boundaries. Had my parents really done something terrible? Something so terrible that I didn't even remember it? After all, the authorities seemed so convinced... who was I to question adults? But yet, not questioning them meant questioning my parents, something that didn't come easy for me.
Ultimately, I was left with a litany of painful, and destructive lessons. I learned that I couldn't trust adults. I learned not to talk about my emotions and experiences, and that even if I did, I wouldn't be believed. Worst of all, I learned that I was "broken" and someone had "done" this to me... because that's how it was presented. It was not a question of "whether" I was broken, but "who" had done it.
Now I ask you, how equipped is a child who believes these things to deal with the type of extreme bullying I would later be subject to?
For all the challenges, I remember the years prior to the investigation as happy ones. I had teachers who cared about me, friends who seemed to learn to deal with my quirkiness, and parents whom I considered to be my best friends. For all their differences from each other, they seemed to understand the things I couldn't communicate, things that I could never share with my peers.
Afterward, I stopped talking about my experiences. I clamped down on the behaviors that had caused the trouble with a force of will that physically hurt. But that had other side effects. Filled with volatile emotions that I now had no outlet for, I began to have meltdowns that I had no idea how to control I would hold my emotions and anxieties so tightly in check that it almost seemed like I didn't have them. Then, I'd explode, and scream until I collapsed in exhaustion.
Eventually, I learned to control these, too, only to have the stress and self-loathing turn in upon itself as depression. By the time I was 13 this would blossom into thoughts of suicide. By this time, I'd been reading psychology and self-help books for several years, and they said that when you were in this level of pain, you should seek professional help. But both of my parents were resistant to this... something I didn't understand.
I was very angry at them for this for years. Why leave me to suffer? Leave me to deal with this alone, when I felt so ill-equipped to do so? Yet, in context, it now makes perfect sense. If what they heard behind closed doors was anything like what these mothers did, it's no wonder that they were skittish. If seeking professional assistance carried with it the threat of losing their child, why would they subject themselves or me to that?
I remember my pain and fear each time they drove me to that doctor's office. I imagine what it must have felt to sit next to your child, and watch her sink into terrified hysterics, listen to her plead with you to save her from it, but you can't. Because you know that subjecting to her to this is the only thing that keeps her from being taken away. Then, the fear of knowing that the fate of your family rests in the hands of the person who's causing your child this pain. I can't imagine what that felt like, and the strength it took to do this.
When dealing with a deeply depressed, traumatized child, where do you turn when the people you would normally turn to in such a crisis are part of the cause of it?
Learning about this history of autism, changed profoundly how I felt about myself, how I felt about my parents, and how I looked at a host of other issues that affect those of us on the spectrum. Within the autism community, I hear a lot of judgmental comments, especially toward parents and autistic people who have had experiences such as mine. Experiences that deeply damaged their trust in the medical establishment.
This mistrust manifests itself differently in many ways, and sometimes in ways that are diametrically opposed to each other. Many of these manifestations are, in the end, destructive. But, when you're dealing with someone whose trust has been damaged, what is the best way to handle that? Berating them? I don't think so. I think the solution is empathy. Understanding where they are coming from, whether you agree with it, or not.
Looking back at the climate of fear these families and I experienced, I have to wonder how many people opted out of it. How many people watched this happen to a friend or family member and said, "Not me. Not my kid." How many people said, like Lorraine Roberts, one of the mothers profiled, did, "We're just going to love her... to heck with the doctors." And how much of the increase in diagnoses reflect the change in this climate of fear? Again, I have to wonder.
Back then, parents were suspect, and autistic people were shut away from the world, and their loved ones. Today, we're part of the conversation. How much has the world changed?
"This is a closed totalitarian system. If you have any reservations, or any doubts or second thoughts, then the problem is yours and we've gotta bring you into the system of judgement, at times even accusation. This is not very nice."
More On The Social Side Of Autism History