When our now 14-year-old son Charlie was diagnosed with autism in 1999, we were told that autism was a rare disorder, occurring in 1 out of 10,000 children — and then, within just a few years, there was talk everywhere of an “epidemic of autism.” Since then, we have found ourselves on a long journey to figure out how best to teach Charlie, help him, ready him for adulthood and for the time when we will not be here to support him. It has seemed both a comfort to know that there are many others like him out there, but also puzzling. We have followed the numerous research studies about autism’s causes, the prevalence rate and possible explanations for an “epidemic.” This latter topic is revised by the Los Angeles Times has begun a four-part series, Unraveling an Epidemic, that started this Sunday, December 11.
Rising Prevalence Rate For Autism in the Past Decade
The Centers for Disease Control and Prevention reports that an average of 1 in 110 children are autistic. In New Jersey where we live the prevalence rate is an even higher, 1 in 94 children. The CDC notes that, in the US, the rate can be as high as 1 in 80 and as low as 1 in 240.
Theories have mushroomed about the rise in autism diagnoses and tended to fall into two categories: Some argue that some external, environmental factor — vaccines or something in vaccines, pollution, pesticides — must be the cause for such a dramatic increase in the number of diagnoses. Others make a case for what come to be known as the “better diagnosis” explanation, that our greater understanding about autism and ability to identify and diagnose it in younger and younger children is behind the rising prevalence rate. A 2005 study found that the autism prevalence rate rose at the same time as diagnoses for learning disabilities and mental retardation fell, suggesting that some of those who are receiving an autism diagnosis today would have received a different one in the past.
Just a few months ago, researchers from Yale University and George Washington University found a prevalence rate of 1 in 38 percent children in South Korea. These findings could be used to support both theories as the study found the highest prevalent rate ever, a seeming sign of an “epidemic” — or was that 1 in 38 rate found because of superior and sensitive diagnostic instruments and the expert observations of those undertaking the study, because of better knowledge and understanding?
Research Undermines Studies Into Environmental Causes
The UC Davis M.I.N.D. Institute has undertaken extensive study of possible environmental causes of autism. But every possible “lead” has been undermined by sociological factors:
Irva Hertz-Picciotto, an epidemiologist at UC Davis, suspects that environmental triggers such as exposure to chemicals during pregnancy play a role. In a 2009 study, she started with a tantalizing lead — several autism clusters, mostly in Southern California, that her team had identified from disability and birth records.
But the hot spots could not be linked to chemical plants, waste dumps or any other obvious environmental hazards. Instead, the cases were concentrated in places where parents were highly educated and had easy access to treatment.
Peter Bearman, a sociologist at Columbia University, has demonstrated how such social forces are driving autism rates.
Analyzing state data, he identified a 386-square-mile area centered in West Hollywood that consistently produced three times as many autism cases as would be expected from birth rates.
Affluence helped set the area apart. But delving deeper, Bearman detected a more surprising pattern that existed across the state: Rich or poor, children living near somebody with autism were more likely to have the diagnosis themselves.
Living within 250 meters boosted the chances by 42%, compared to living between 500 and 1,000 meters away.
Bearman sums up the reason for the increase in the autism rate as “people talk” and that, while autism is definitely not contagious, the diagnosis is.
More Than 55,000 Autism Cases in California
Autism diagnoses have skyrocketed in the past decade in California:
The California Department of Developmental Services, which focuses on the more debilitating cases, set off a national alarm in 1999 when it reported 12,000 cases, a rise of more than 200% in a decade.
The number has since increased more than fourfold and now exceeds 55,000. Because most patients remain in the system for life, the count is likely to continue to rise for decades.
California’s public schools serve students from across the spectrum, including many with milder symptoms. Since schools started tracking autism in 1991, the caseload has climbed precipitously — to nearly 14,000 by 2000 and nearly 70,000 by 2010.
Moreover, some parents interviewed by the Los Angeles Times have sought to have a child receive a “more severe” autism diagnosis, as it means that a child will receive a greater number of services. Not only have parents sought an autism diagnosis; some practitioners have been glad to give a child one:
Dr. Nancy Niparko, a child neurologist in Beverly Hills, said that whether she identifies a child as autistic can come down to whether she believes it will do any good.
“If it’s going to improve the possibility of getting services that will be helpful, I will give the label,” she said.
“I don’t work for labels. Labels work for me.”
More Autism Cases Can Be a Positive Sign
Neither my husband Jim nor I had known much about autism prior to hearing the word used in reference to our tall-for-his-age, late-walking, not-talking toddler, more than a decade ago. But once we knew the signs of autism — profound difficulty with grasping and executing social interactions and with communication; a tendency to repetitive, ritualistic behaviors and extreme responses of a screaming-in-near-death-terror when we tried to get Charlie to stop these — we could readily detect autism in other children. We also started to routinely hear about this or that friend or relative or neighbor or colleague having “a child with that too” or knowing someone with such a child. The steadfastly eccentric friend, the co-worker who always seemed to be looking through you: Might they also not be on the autism spectrum, perhaps having Asperger’s Syndrome? Suddenly, we seemed to be finding autistic people everywhere though many had abilities in speech and academics far exceeding Charlie’s.
Some decry the increase in autism diagnoses as evidence that it is the trendy “disease du jour” and that parents are simply seeking it to gain more services. But it can also be argued that it is a huge plus that more individuals are being diagnosed. More cases of autism is a sign that, thanks to greater awareness, understanding and even acceptance about disability, more people are receiving services and education that can help (one hopes) enable them to have better, fuller lives.
Related Care2 Coverage
Photo of Charlie by the author