“Look at me! Look me in the eye!”
When I was very young I was informally diagnosed with Asperger’s syndrome. I didn’t play normally and I had memorized the entire New York City subway map. My mom would hold my face against hers to force me to make eye contact.
In the past two decades, autism has become a catch-all diagnosis for children whose behavior appears antisocial. A widely cited 2012 report from the Centers for Disease Control and Prevention found that about one in 88 children in the United States has an autism spectrum disorder. The “spectrum” describes a wide range of conditions, from the milder Aspergers syndrome to the much more severe neurodevelopmental Rett syndrome. All are characterized by repetitive behaviors and some degree of impairment in social and communications skills, usually starting around the age of four.
Autism in America today is serially misunderstood and misdiagnosed. Our ignorance threatens our children and economy, and Harvard is uniquely positioned to help.
We think we know what to look for. From Dustin Hoffman in “Rain Man” to Danny Pudi on “Community” and Benedict Cumberbatch in the BBC’s “Sherlock,” popularculture has created an entrenched image of a person on the spectrum—male, usually white, awkward, brilliant in specific subjects, inaccessible, somewhat self-involved. Often, as in the character of Sheldon in “The Big Bang Theory,” the archetypes of the nerd and the slightly autistic appear interchangeable.
When I was in high school I heard the label “Aspies”—referring to Asperger’s syndrome—applied to classmates known for academic success but poor social skills. The trope has entered the popular lexicon. But we blur the condition’s definition at our peril.
It’s becoming increasingly clear that the spike in diagnoses is connected to popular perceptions. A 2010 study found that African-American children were 2.6 times less likely to be diagnosed with an ASD, which the study’s authors attribute to “possible variations in parents’ descriptions of symptoms, clinician interpretations and expectations, or symptom presentation.” In other words, parents and physicians alike are more likely to diagnose children that fit the popular archetype. And a child living under a false diagnosis will grow up under the mistaken belief that there is something wrong with her, a fear that can compound the sense of isolation and produce its own problems.
Misdiagnosis is so prevalent partly because we still don’t really understand autism. While various theories exist—it seems to be genetic in some cases and may be related to synaptic dysfunction—we know little about what causes it and nothing about how to prevent it. We also don’t know why some children diagnosed with milder spectrum disorders seem to leave the spectrum entirely in later life, sometimes within only a few years. I might have been one of these—or just a geeky kid who liked trains.
Unfortunately, some cases of autism are serious, and the lack of scientific consensus has pushed many parents to desperate measures. An infamous (and now discredited) 2001 article linked autism to mercury in vaccines and prompted widespread fears about immunization. Old fears die hard. The internet is awash with non-peer reviewed reports that autism is linked to all kinds of environmental causes. Con artists and informal operations offer dangerous alternative treatments, none of them FDA-approved. Some parents have turned to chelation therapy, the chemical removal of heavy metals from the body, and hyperbaric oxygen chambers. These treatments recall the barbaric methods once used to treat mental illness, but they also drive home how helpless parents of many autistic children feel.
If left unaddressed, this epidemic of mistreatment and misdiagnosis will be as disastrous for our economy as for our children. Autism is expensive. According to a study by Michael Ganz at the Harvard School of Public Health, each case of autism carries a social cost of $3.2 million over a lifetime. And care is not cheap, sometimes costing $50 thousand or more per year. We must guarantee treatment, but reserve it only for those who need it.
Progress has been slow in part because autism research is underfunded and under-resourced. Last June a freezer malfunction in Harvard’s Brain Tissue Resource Center destroyed 53 preserved autistic brains, a third of the collection, which is still the largest in the world. The catastrophe set research back years, as one of the main limits on progress is a lack of well-preserved tissue samples.
So what can we do? First of all, The Patient Protection and Affordable Care Act mandates that some, but not all, insurance plans cover applied behavior analysis, the most effective clinical treatment for autism. We should call on Congress to amend the law so that all American families are covered.
Second, Harvard should throw its weight behind a public campaign to draw dollars from the Department of Health to expand its unique program in autism research. It can also work to publicize the great service autistic men and women can do for our understanding of autism by agreeing to donate their brains for research after death.
Third, students at Harvard can help by being more thoughtful and aware. We must recognize that we have peers here both on and off the spectrum who feel isolated and sometimes act in ways that appear awkward or even antisocial. Regardless of condition: patience, respect, and a little empathy—not pity—go a long way.
Eyck A. Freymann ’16, a Crimson editorial comper, lives in Canaday Hall.