The Blame Game in Autism
The interwebz have been abuzz this week, debating Moises Velasquez-Manoff’s editorial in the New York Times on autism and immune function. Although Velasquez-Manoff is a little late on the autism/immune function thesis (which has been posited in research projects since at least 2005), it’s his use of autism stereotypes and ableist language that put this article on my radar. It’s the assumption that autism is a sign of a broken or damaged child that has made me question both his interpretation of that thesis and the implications for the families of children with autism – and the autists themselves.
At first, I skimmed it after no fewer than six friends emailed it to me – it’s one of the truths of being a health care researcher and a parent of an autist that every article in the popular press that touches on autism causes or therapies will be immediately passed on to me, usually multiple times – but a second close reading set off the alarm bells in my head. They were the “Refrigerator Mother” alarm bells that have rung more times than I can count since my son’s diagnosis six years ago.
After Leo Kanner first identified autism in 1943, one of the first theories for the cause of autism (and, one would assume, a “cure”) was the “refrigerator mother“: a mother who was so cold and emotionally-withholding that her child responded by retreating into himself (classic Kanner autism was, at the time, almost always diagnosed in boys). It was the mother who created the autist, both literally and figuratively: she had not only given birth to her child, she had broken him.
The “refrigerator mother” theory lost ground in the 1960s, influenced in part by John Bowlby’s work on secure and insecure attachment: apparently, there were a lot of us who were just doing it wrong, because he found at least three distinct examples of poor maternal-child attachment. They were associated with behavioral, interpersonal, and mood disorders, but not with autism. Apparently, even the chilliest of maternal fridges couldn’t create an autie out of nowhere.
The major shift to a biological explanation for autism occurred in the 1980 and 1990s, while the incidence of autism – and its scope – was skyrocketing. Driven by many factors, such as the inclusion of autism spectrum disorders like Asperger syndrome in the Diagnostic and Statistical Manual (psychology’s Bible), the diagnosis increased from an estimated 1 in 10,000 births to the current 1 in 88. And no one contributed more to the illness model of autism more than Andrew Wakefield. His small, methodologically-flawed study of gut function in 12 children who also had autism symptoms was used to create a vaccine panic that was possibly unprecedented in immunization history.
That his study was not only flawed but factually incorrect, and that he had a financial interest in increasing the use of a single-disease vaccine, did not come to light for a decade. By then, the idea of creating an autist out of a “healthy” child by doing something – withholding affection, vaccinating, exposure to mercury – had taken a solid hold of both the culture as a whole and of the trend of autism theory. If we could just figure out where we went wrong, there need never be another child with autism.
The New York Times’ editorial focuses on research that links autoimmune disorders like rheumatoid arthritis (RA) and inflammatory conditions like metabolic syndrome with an increased incidence of autism in the children of women with those conditions. This is neither startling nor scientifically implausible: the association with immune/inflammatory response has been sustained through a variety of studies encompassing a number of conditions. Pre-eclampsia, for example, currently thought to be partly caused by an immune/inflammatory response in the woman, is associated with an increase in the incidence of autism. An association between autism and immune response is neither implausible nor unlikely.
So, in itself, this is hardly a startling or troubling thesis. Where my bells start to ding is both at the assumption that autism is proof of damage (whether caused by an immune response, a vaccine, or a withholding mother) and at how the research focuses on women. We have created our children with autism in utero, or by choosing to vaccinate, or by denying them a normal mother-child relationship. While the blame isn’t explicit, its subtext is clear.
I can handle the mother-blame – after all, it’s something that we as a society do every day. Kid acting up on the playground? Hair untidy? Too many cavities? Not meeting reading standard? The parents must be to blame – and by “parents,” society means “mothers.” It’s the dads, after all, who are lauded for keeping their kids alive at the end of an afternoon “babysitting” (when was the last time you heard a mother refer to “babysitting” their own children?), while the mothers are told how we are damaging our children by working, by not working, by disciplining too much or too little, by limiting sweets, by having them freely available, by using plastic toys, by not exposing them to enough experiences. There’s no way to win as a mom, and after awhile the only thing you can really do is shrug and move on.
But the assumption that we must have broken children because they have autism is different, and it’s an assumption that underlies almost all research being done. Autism is never framed as a neurological difference to be accommodated or enjoyed; it’s always framed as a disease or injury to be prevented or cured. Velasquez-Manoff compares children “afflicted with autism,” to “diseases” or “epidemics.” The use of language of illness sets up a model in which autism is automatically a tragedy, something to be avoided at all costs. It uses the logic of the vaccine panic, where parents decided that death or disability from vaccine-preventable disease was better than the spurious risk of autism. Essentially, they were saying they would rather have a dead kid than my kid.
This is not to say that autism doesn’t affect families in different ways. We’re incredibly privileged to have a child with autism who is verbal, who is cognitively above-average, who does not have violent tantrums or pica, who will probably be able to live independently as an adult. We have friends who are affected far more by their child’s autism, who live with a level of anxiety about their kid’s future that I don’t have to share. Objecting to the disease model of autism in no way invalidates their truth or their fears. But framing autism as a disease means that instead of focusing on how to use my child’s strengths – his extraordinary visual perception, his purely logical focus on human relationships, his profoundly different perspective on society and its norms – we’re focusing on how to avoid more children like him being born. We’re settling blame, explicit or not, intentional or not, on the mothers of children like my son, because we cannot imagine the world in which he lives as anything other than tragic, and tragedy, from Sophocles on, has always been traced in the end to the mother.