What NOT to make of new autism statistics

The 2008 estimate, released last week, based on data collected by the Autism and Developmental Disabilities Monitoring network's 14 sites, including Philadelphia and New Jersey. (U.S. Centers for Disease Control and Prevention)

Leave it to businessman Donald Trump to turn World Autism Awareness Day on its head.

On Monday, Trump was busy spreading misinformation about the causes of autism on a day that, according to UN Secretary General Ban Ki-moon (the United Nations adopted this day in 2007) should be dedicated to cultivating awareness of this difficult lifelong developmental disorder and “spur such action and draw attention to the unacceptable discrimination, abuse and isolation experienced by people with autism and their loved ones.”

Trump’s trigger was last week’s release of new autism prevalence data by the U.S. Centers for Disease Control and Prevention (CDC) indicating that now “one in 88 children have been identified with autism spectrum disorder by the age of 8” — nearly double the estimate a decade ago.

Trump, who has no scientific training and is no stranger to the “vaccines cause autism” fiasco, declared on Fox and Friends that he has “a theory. It’s a theory that some people believe in — and that’s the vaccinations.” “I’ve seen people where they have a perfectly healthy child, and they go for the vaccinations and a month later the child is no longer healthy,” Trump added. Given his family’s generosity to the autism advocacy world, Trump should know better than to peddle falsehoods about the disorder that both misinforms parents struggling to help their children and harms the public’s health.

That people like Donald Trump are given any airtime on this subject to begin with, however, speaks to a persistent problem in autism research, diagnosis, and care. We still have a very poor idea of the cause or causes of most cases of autism almost 70 years after the diagnosis was first recognized. We still have a poor understanding of why treatment works for some and not others. And the scientific and public health experts have historically done a poor job communicating about all aspects of the autism diagnosis to the diagnosed, to their families, and to the general public.

The parents who have embraced the various vaccine hypotheses — that autism is caused by getting too many vaccines all at once, the preservative thimerosol in the vaccine, or a reaction to the measles-mumps-rubella (MMR) vaccine — are, after all, just parents, sometimes desperately seeking answers for their diagnosed children from what can be an unfriendly medical system. Public health has gotten better over the past decade at working with parents of all perspectives. For example, the Interagency Autism Coordinating Committee coordinates “all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder,” and has representatives on the committee who are clinicians, scientists, self-advocates, parents, and advocacy group leaders.

Given the dramatic increase in the CDC’s measured autism prevalence from 2000 to 2008 — prevalence has gone from 1 in 150 children in 2000 to 1 in 88 children in 2008 — we must acknowledge the public health crisis on our hands. These numbers have implications for diagnosis, health disparities, insurance, and adults with autism, among other concerns. And we all want to know whether or not these trends reflect a true increase in the disorder from environmental changes, are simply a reflection of an expanded diagnosis, greater awareness that led to a more likely-to-be-given diagnosis, or some combination of all these factors.

Right now, nobody has a perfect answer. CDC identifies several risk factors for autism spectrum disorders: children born to older parents; some premature or low-birth-weight babies are at greater risk; and, exposure during pregnancy to some drugs, including thalidomide and valproic acid. Another possible risk factor: maternal exposure early in pregnancy to the disease rubella (a disease that can be prevented by vaccine, which is a fact that somehow gets lost in all the anti-vaccine hullaballoo). Studies for other risk factors are continuing around the world and, in the coming decade, scientists believe more information will be forthcoming.

But there can be few things more frustrating in the world than having a child diagnosed with a lifelong developmental disability for which you have few, if any answers about cause and best treatments. We are living in an age where there is so much information about autism, but not enough answers. Hopefully, for all those affected, this will change soon.


Michael Yudell is currently writing a history of autism called Ages of Uncertainty: Autism Spectrum Disorders and the Search for Cause and Cure.


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