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“How much did you beat yourself up?”
“Fortunately, the tests absolved the parents.”
A 15-minute feature produced by the Canadian Broadcasting Company (CBC) for their nightly news program, The National, begins with images of children and adults from two families. The photos are shaped as puzzle pieces and fade from color to grayscale as new photos appear; the color has washed out of these families' lives. Slow, spare background music haunts the scene.
This is a story about research into the genetic markers of autism. The scientists who are interviewed talk about the “100 different forms of autism,” the potential for early intervention, and the hope for developing “rational drug designs.” The reporter, on the other hand, works tirelessly to promote the idea that autism has crushed the life out of these families. Whose narrative wins out in the public conscience? The scientists studying their slides or the reporter speaking in tragic tones while ominous music plays in the background?
“How much did you beat yourself up, wondering what the cause was?” This is the question the interviewer uses to introduce us to the first set of parents. The mother buys into her premise and admits, “A lot.” Then she defends her self-care during pregnancy. She exercised, ate well, and avoided alcohol. She is obliged to convince us, and herself, that she should be exonerated. Certainly the interviewer encourages her to think an alibi is in order.
The second family’s story is even more twisted. They are introduced with a shot of a 14-year-old boy running along the sidewalk of the cul-de-sac where he lives. The family has “nothing to help understand why running aimlessly through the neighborhood is soothing to him.” Of course, I think, if the boy expanded his route by a mile, then “running aimlessly” would be renamed “jogging,” and we would praise his exercise regimen for its mental and physical health benefits. The boy catches his breath and the reporter interviews him. He explains, “Autism can usually make a lot of people unique, different from other people.” And when the reporter asks him how he feels about that, he replies, “I’m relatively chill with it.”
But the reporter is not relatively chill. She tells the boy that the interview is over and moves on to the parents. As we see the family walking down a path, she tells us, “It’s gnawed at [his parents]. Did they do something to cause it? Were they ultimately responsible?” The mother explains that they have participated in the genetic testing in order to understand where, how, and why, and what they can do next. “When they finally got the answer,” intones the reporter, “they also got a form of absolution.” Because neither parent carried the identified gene mutation, she explains, “The smoking gun, in their case, was a case of bad genetic luck.”
This family’s story ends with the mother taking her son into a fast-food restaurant. She prompts him to order and to collect his change after he pays. Our reporter sadly pronounces, “For [the son], that makes buying a donut an exercise in independence.” (For what adolescent isn’t learning to navigate a restaurant an exercise in independence? From all appearances, the kid seems to be doing pretty well!)
When Bruno Bettelheim blamed “Refrigerator Mothers” for causing their children’s autism in the 1960s, these mothers were forced to defend their parenting to their physicians and therapists and society at large. Everybody blamed them for creating autism through their cold, detached parenting style. Women absorbed this public shaming and questioned both their maternal instincts and their sanity as they met with opprobrium from all sides.
Now we know that autism may have many causes, almost all of them likely genetic. A mother’s love is no longer put on trial. But the mother—and now the father too—are still suspect. Suspected of what? Nobody knows for sure, but whatever it is, apparently absolution is what we should seek.
Two obvious problems arise with this narrative. First of all, why are we using the language of blame? In almost every sense of the word, “blame” connotes misbehavior and moral failing. (Assigning blame to a natural disaster is one of the few usages devoid of moral judgment.) No one has ever been blamed for cooking a delicious meal. Or for birthing a child who won the Olympics or a Nobel prize. And yet we parents often do blame ourselves or fear the judgment of others when we learn that our children are autistic.
When my daughter Sam was diagnosed, I was pregnant with Kelly. Just as in the CBC story, I felt like the color had drained from my world. I asked my midwife what had caused it, what I'd done wrong, and she shrugged, “Who knows? Maybe you ate too much broccoli while you were pregnant.” She was joking, but for years I wondered about the broccoli.
I realize now that asking what I did is one question. Asking what I did wrong is another question. Society must accept this fact: Parents of autistic children have committed no sin requiring absolution.
I do not believe we will embrace this truth until we acknowledge the concomitant truth that autism is not, in and of itself, a tragedy. Just as cooking a delicious meal is no cause for mourning, neither should bearing an autistic child be. I understand that parents of autistic children are in for more challenges than most of their peers. I understand the fear of the future. I understand that children with horizontal identities—children remarkably different from their parents—will not grow into the adults their parents envisioned. I understand this because I live it. I also realize that some autistic people are cognitively impaired, and some autistic people need constant supervision. Such limitations are a terrible strain on their caregivers and probably on their quality of life (though it would be presumptuous for me to say). Fortunately, my child is relatively independent, despite her severe struggles with anxiety and social interactions.
The autism I know is not a tragedy. Color washed out of our lives only temporarily, only until I started focusing on my daughter’s extraordinary gifts. As so many of us have said so many times, society needs to stop pathologizing our autistic children and figure out how to support them so their gifts can shine. Then we parents can stop answering such questions as “How much did you beat yourself up?”
