Two big autism stories bookended last week. First, a mother threw her autistic child off a bridge. The second was Jerry Seinfeld, in an interview with NBC's Brian Williams, placing himself on the autism spectrum.
The danger with announcements like Seinfeld's -- or fictional portrayals of the Everyman autistic like Ray Romano's Hank character on "Parenthood," who self-diagnoses his autism after reading a book about Asperger's syndrome -- is that autism, a neurological condition, becomes almost fashionable. Who wouldn't want some odd quirkiness to make you memorable?
Seinfeld told Brian Williams that one symptom of his autism is that he over-literalizes language -- for example, the expression "the apple of my eye" makes no sense to him, as no one's eye has an apple. You can hear echoes of his comedy in here, the implicit takeaway becomes the idea that autism could be an enviable driver of creativity, the same way that politicians and corporate interests spin climate change with visions of bananas growing in Minnesota while ignoring the devastation it will also bring.
Seinfeld said he hopes his announcement will help diminish the stigma of autism, an unequivocally laudable intention. Retroactively self-diagnosed adults or high-functioning autistics like Temple Grandin indeed may be living proof that one can overcome huge obstacles and live with and even flourish despite autism. Every day, dead people, too -- Mozart, Newton, Einstein -- are also retroactively diagnosed with autism.
What I fear is that these public faces of autism will allow society, and more important, policymakers, mentally off the hook. You can have autism and get a Ph.D.! It helps you write jokes! Your charming quirks and aggravating behaviors are now explainable.
To veer to the other end of the spectrum, the sporadic -- but steady -- news of overwhelmed parents killing their own children warns of a crisis building in our own homes. Many of these cases have been mothers, but before we explain it away, as it has been, with gendered suggestions of mental illness, attention seeking, etc., let's also remember this story about a father -- and high-ranking former Bush official -- who shot his autistic 12-year-old son in a murder-suicide inside their suburban McLean home.
Autism as a disorder was only discovered in the 1940s, but remained so rare (the rate of 1 in 10,000 staying steady for decades) that most baby boomers and Generation Xers likely never even heard of "autism" during childhood. Well into the 1980s, the appearance of an autistic patient would be considered such a rare event in the hospital, medical students would be excitedly summoned to observe.
The CDC, which tends to err on the side of caution (observe the equivocating slowness with which it has reacted to the recent Ebola issue), earlier this year released an estimate that the autism rate has shot up to an alarming 1 in 68 children. The University of California at Davis' M.I.N.D. Institute has also examined the data on a state level (California has some of the highest autism rates), confirming that the rise was not due to better diagnosing or counting.
Most urgent, what's being ignored is the likelihood of environmental influences (likely multifactorial) fueling this rise in these numbers. A study at Stanford, the largest of its kind, followed twins where one of the pair is affected by autism and found that genes accounted for only 38 percent of the autism risk, with 62 percent from non-genetic factors -- suggesting that "the role of environmental factors has been underestimated."
Since World War II, we use exponentially more chemicals; environmental regulations, such as the Clean Air and Water Act have been gutted; drugs like SSRIs and antibiotics are not only in heavy use, they are now ubiquitous in our food and our water. A study at Columbia University's Mailman School of Public Health has found that burning fossil fuels releases toxins like polycyclic aromatic hydrocarbons, which have been shown to be associated with developmental delays.
And while people like Seinfeld and Temple Grandin make a nice living, at the "other" end of the spectrum, what are the costs?
Our own family's out-of-pocket expenses of raising a child with autism average $20,000 to $30,000 a year -- as it has, very consistently in the last 10 years -- including schooling, legal fees, therapies, childcare, which puts us exactly in the CDC's estimate of $21,000. If the high rate of autism isn't disturbing to you, consider that the cost to care for and house a severely autistic adult for life easily exceeds a million dollars, not to mention forgoing the tax revenue, etc., if the person could participate fully in society. Taken in aggregate, the CDC tells us, "the societal costs of caring for children with ASD were over $9 billion in 2011."
And I haven't even begun to address the emotional costs, of having a child who can't speak, connect, one that might be a danger to himself and others. If you want to read one book that helps illuminate the lives of parents of kids with severe autism -- a gigantic missing piece in the cultural portrayal of autism -- read Andrew Solomon's "Far From the Tree." These children are not solving mysteries, getting Ph.D.s, becoming millionaire comedians.
Being a parent of a child with severe autism in no way diminishes my respect and admiration for Jerry Seinfeld and others striving for autism acceptance. What I am proposing is separating the high-functioning end of the spectrum -- perhaps calling it something else -- so that we can focus on the urgent and looming issue at hand.
In my city alone, a former pharmaceutical executive is on trial for killing her autistic son via drug overdose; the cover story of a recent New York magazine was of Kelli Stapleton, who attempted to kill her autistic daughter via carbon monoxide. If you read the fine print of the news, every few weeks or so you'll see that another child with autism has wandered off and drowned somewhere. In New York, it was a boy named Avonte Oquendo whose disappearance set off a city-wide search in October, his remains washing up the following January on the shores of the East River, where he'd drowned, a few blocks from his school and likely only minutes after he'd left.
It's only a matter of time before another child is killed, and we won't even remember their names. We need to call autism what it is: a public health emergency, no less deadly and devastating than Ebola.
And beyond the public health issue, at these numbers -- I have to repeat: 1 in 68 -- where are we as a society if we continue to ignore the cancer-like growth of incidences of a disorder that was virtually unheard of just a generation ago? If it turns out environmental factors are at play -- factors that we steadfastly ignored because we glossed it over by saying, "How bad could autism be? Jerry Seinfeld has it" -- then we are all culpable in robbing these children of their potential and sometimes their lives.
Marie Myung-Ok Lee
Marie Myung-Ok Lee teaches creative writing at Columbia University, and her next novel is forthcoming from Simon & Schuster. Find her on Twitter @MarieMyungOkLee and on Facebook. MORE FROM Marie Myung-Ok Lee
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