Michael John Carley
Michael John Carley, in his book "Asperger's From The Inside Out," talks about how many adults with Asperger's, post diagnosis, take "long walks" through their memories, re-evaluating them in the context of Asperger's. During the course of these "long walks," there are times when you find your perceptions change dramatically, and pieces fall together in a way they haven't before.
Often, it's amazing how one little experience, or new piece of information can turn your perception of the past on its head. As part of my "long walks," I've done a lot of reading and viewed a lot of videos, as a means of learning more about autism, Asperger's and, by extension, myself. One of these videos was the documentary "Refrigerator Mothers," which I have mentioned previously. As a historical record, this movie made quite an impression on me. However, the most impactful moment in this film for me was a very personal one that took me off completely off guard.
In a scene toward the end of the movie, one of the mothers in the film is shown talking about the value of group homes for adults with autism. As she talks, footage is shown of her son preparing for a Sunday visit to her home. When they arrive, he flops on the couch. She asks him if he wants to watch tv and offers him a choice of two videos. When I see which one he chooses, the cartoon "Puff The Magic Dragon," I immediately perk up.
When I was young - I would become obsessed with certain movies and shows. When these movies or shows would end, I would fall apart, sobbing inconsolably for hours. My parents were mystified by this, and really struggled to know what to do with me. What was the movie that triggered this reaction most frequently?
You guessed it - "Puff the Magic Dragon." Now, I find myself wondering — is this a coincidence, or something more?
Not having seen this movie in decades, I had only the vaguest memories, but when the footage cuts to scenes from the movie, I'm speechless. I feel that I've been hit right between the eyes.
The scene opens up on a sad, silent boy, his parents, and three official looking doctors, who state: "We have concluded our consultation, and being of one mind (the best in all medicine may we add), we have come to the conclusion that your son will not nor cannot, speak, communicate, nor indeed, relate in any way, to the world around him." Does this description sound familiar?
"Puff the Magic Dragon," was a story about an autistic boy who is "cured" by an adventure with magic dragon. This casts my crying, and my outbursts of "I want Puff!" in a completely different light.
By this point, I'm weeping in earnest, because that's when I realize: I knew. Even then, I knew what I was.
Had you asked me to describe it, I couldn't have told you. But I knew it when I saw it. Most disturbing to me, though, was that I had already absorbed the world's message — that I was "broken" and needed to be "cured." That in order to be OK, I had to be different than what I was. In a time when my biggest concern should have been what doll to play with next — I was a child who spent heartbroken hours weeping for what I could never be: "normal."
And I can't help wondering how it happened. I know my parents were acutely aware of how sensitive I was - and they were more accepting than most. And I know they went out of their way to protect me and my self-esteem. When my Kindergarten teacher told them that I would have to repeat the grade, due to my "emotional immaturity," they hid the true reason from me, and my classmates.
They didn't want me to feel "stupid" or question my abilities. They didn't want to see me teased, or be subject to the stigma of being a kid that was "held back." They knew I was smart, and so did my teacher. So they got together and concocted a plan.
What my classmates and I were told, was that my teacher was going to need to keep one of us as a "special assistant" in the following year - that child would work closely with her, and would be a mentor for the other children. I still remember the excitement in the room as the teacher's assistant, a kind young man with curly hair, pulled my name from a bag. "And the assistant will be....Lynne!" he announced with a big smile.
I was deeply excited. Over the next year, I took my "assistant" role seriously. I felt very proud and lucky to have been chosen. My teacher went out of her way to use this, giving me assignments that would require me to practice my social skills by interacting with her and the other children on a regular basis. By the end of the year, they felt that I had improved enough that I could move on to the first grade.
In a world that my parents and teachers took such care to spare my feelings and preserve my self esteem, how is it that I still absorbed such negative feelings about myself and my abilities? Where did it come from?
I still don't have an answer for that - but I have some clues. The first is that, no matter how much you try to hide or minimize difference, it seeps out in other ways. One way in which this happened for me, was suggested by another scene in this movie, when a mother discusses how she had sometimes had to clean her child's room with a toothbrush, due to his propensity for feces-smearing behavior.
As I watched this, I flashed back to a vaguely remembered conversation from childhood. "Daddy," I remembered asking, "Why don't I have any of my baby toys?" In my few play dates with other children, I had noticed a repeated pattern. The child's mother would link our hands, and say, "Why don't you show Lynne your room?" The child would then take me on a tour of their room, often stopping to spend considerable time at the toy box. When there, they'd usually pick up a toy and say something like, "This was my favorite toy when I was a baby - my mommy said I'd never put it down." It was a part of their history - one that connected them to the past.
I, however, didn't have any toys to show. From my babyhood, I had only three things: a shredded blanket, a faded pillow, and a musical "Winnie the Pooh" doll, which no longer played music. When faced with my question, my father flinched, rocked a little, then said, "Well, this is going to sound a little gross, but when you were a baby, you PLAYED with your POOP."
"I did?" I asked, amazed that I would do such a thing.
"Yes - you'd be in your crib, and I'd turn my back for just a minute, and you have your hand in your diaper, and you'd smear it all over the walls." He mimicked the action, then mimicked it again. "ALL over the walls! It got all over everything. We tried to clean what we could — but in the end we had to throw most of it away." And the Winnie the Pooh doll? In desperation my father had had to wash it, ruining the mechanical parts that played the music.
I can only surmise that little differences like this — social conventions that I couldn't join in, the half-heard conversations about my challenges, all the trips to the doctors, etc., took their toll. Somewhere along the line - I put them all into a package, taking a meaning from them: I was "wrong" and needed to be fixed. And that formed a powerful pain — that has stayed in my heart for years. I'm still unlearning it.
There are many who get upset at autistic self-advocates who suggest a change in the way we approach autism - moving away from words like "cure" and "recovery." But I, like many others, know the cost that feeling that you're "broken" and "wrong" can have in your life. It's corrosive. Painful. It undermines your sense of self and relationships — relationships that many of us desperately want.
The message of conformity in this world is so pervasive — it's everywhere. It's hard to know when and how the feeling of being an outsider will take root. And it can be hard to protect a child from this. As a society, we need to realize how easy it is to make a person feel "wrong" or "other" — and how great a cost it can be to the person.
My parents never stopped caring about my issues, and they didn't stop helping me. Acceptance and helping are not mutually exclusive. Children need to be helped to grow, learn, and to be the best they can be. But in the process, we need to be careful to make sure that these children know that they are loved for who they are, whether they can be "normal" or not. Because the alternative is extremely painful — take it from one who knows.