“……parents who bear the emotional burden of caring for a disabled child in a world seemingly devoid of answers, just want clarity, and unfortunately the only thing that’s clear right now is science does not yet know the absolute cause of autism.”
as Suzi Parrasch wrote at the end of a recent Care2.com post, Autism and Vaccines: The Public Debate Rages On (a post in which she kindly cited a recent post I wrote on the discredited “link” between vaccines and autism). While my husband, James Fisher, and I have been able to find a way to help our moderately to severely autistic adolescent son, Charlie, it is the case that much about autism, such as what causes this neurodevelopmental disability, remains yet unknown. And yet, over the course of more than 12 years of raising Charlie, why he is as he is has given way to other concerns, including the need for appropriate schools and services for him, for (when he’s an adult) a job and housing. When the “cause question” comes under discussion in our household these days, we’re more likely to remind each other to “look in the mirror,” and note our families’ histories of various “disorders,” “conditions,” and “differences.”
“Do Toxins Cause Autism?,” an op-ed by Nicholas Kristof that appeared in the February 24th New York Times, puts the “cause” question at dead center. Kristof’s earnestness at inquiring into the potential environmental causes of autism, and specifically about chemicals such as phthalates that an unborn child may be exposed to in the womb, is commendable. However, as scientist (and parent of a child on the autism spectrum), Emily Willingham writes on her blog, we had best exercise some caution when discussing autism and environmental chemicals:
“What we need to be careful about is talking about any links as established before the work has even been done. Nicholas Kristof in The New York Times tries to make this argument, but I’d call it a big fail from the get-go, as the headline itself is a screaming warning of “Do Toxins Cause Autism”? Aren’t we just now trying to recover from the leading headlines relating vaccines to autism?
“Kristof states, and he’s right, that “these are difficult issues for journalists to write about…Evidence is technical, fragmentary, and conflicting, and there’s a danger of sensationalizing risks.” It’s quite true. The studies of the effects of these compounds in humans are mindboggingly complicated, with endpoints that may be under the influence of a host of confounding factors. And once again, we can’t hypothesize an influence of any environmental factor as being an actor in the rise in autism rates unless we’ve established that the rise is genuinely an autism increase, rather than an increase in diagnostic accuracy. And the jury is still very much out on that, although most evidence points to the latter explanation as valid.”
Kristof refers to autism as a “frighteningly common affliction” that is among “development [sic] disorders” that “constitute a huge national health burden.” Again, as a parent of an autistic son, I much appreciate Kristof’s concerns. However, his alarmist language and his suggestion that taking care of individuals on the autism spectrum is some sort of “burden” for our nation are not “just semantics,” but point to some misperceptions about autism and about what life with an autistic individual are like.
Kristof also writes that autism and “other development [sic] disorders” have “proliferate[d]” in recent decades “along with certain cancers in children and adults.” This sort of statement suggests that autism is like cancer, that autism is some sort of illness. But as I wrote in a previous discussion about autism and cancer,
“The purpose of comparing the autism rate to that of childhood cancer and other diseases is to convey how pervasive autism has become (or seems to have become). An unfortunate side-effect is that some say that having autism is worse than having cancer. …….
“One argument offered for why “autism is worse than cancer” is that people with autism live a normal life-span, and so have to live with this awful disorder for their whole lives: These notions assume that living with autism is so awful that it’s tantamount to a fate worse than death.”
Mentioning autism in the same breath as toxins and cancer suggests, by association, that autism is “toxic” and a sickness, and the individuals with autism are “damaged,” “sick” and in need of a “cure.”
Kristof is not alone in portraying autism as an illness caused by toxins, nor is he alone among journalists in zeroing in on such environmental factors as a cause of autism. He suggests that, as a journalist, it is something of his duty to point out potential environmental threats to our children’s health. But focusing only on such factors, on a “cause,” diverts attention from the very pressing, urgent needs of individuals on the spectrum and those who are for them, of supports and services and schools, of jobs and housing.
As self-advocate Ari Ne’eman writes in a recent essay on autism advocacy in Disability Studies Quarterly, “the traditional priorities of autism advocacy… focus on eliminating the autism spectrum”—via finding a “cure,” for instance—rather than on “pursuing quality of life, communication, and inclusion for all autistic people.” We need, Ne’eman argues, to “reset” our priorities, in order to truly supports individuals with autism. Autism is a lifelong disability and what’s especially needed are reports not of harried parents desperately seeking a cause, but of the day to day struggles, challenges, and good times (yes, these do occur) that are part of living with and as an individual on the spectrum.
Photo by AdamSelwood.
Kristina Chew, Ph.D., Assoc. Professor of Classics at Saint Peter's College in New Jersey. Since 2005, she has been blogging about autism, disabilities, and education, previously at Autism Vox and now at We Go With Him, a daily journal about life with her 12 1/2 year old son. She has recently published essays in Disability Studies Quarterly and in Gravity Pulls You In: Perspectives on Parenting Children on the Autism Spectrum (ed. Kyra Anderson and Vicki Forman).