Are we Abandoning Families with Autism?

On June 19, 2002 I attended the congressional hearing, “The Status of Research into Vaccine Safety and Autism” in Washington DC. This hearing was part of the oversight investigation of the Committee on Government Reform, headed at the time by Congressman Dan Burton (IN-REP).

According to the background material presented to the Committee by Congressman Burton, “When the Committee began its oversight investigation in 1999, autism was thought to affect 1 in 500 children.” In 2002, when the hearing was held, autism was thought to affect 1 in 250 children. CDC data from 2010 indicates that 1 in 110 children have an autism spectrum disorder (ASD).

As I was leaving the hearing, I saw a woman standing outside holding a sign detailing the $30,000 a year it cost to care for her autistic child.  According to a 2007 study by Michael L. Gantz, MS, PhD, “The Lifetime Distribution of the Incremental Societal Costs of Autism,” autism costs our society “upwards of $35 billion in direct (both medical and nonmedical) and indirect costs to care for all individuals diagnosed each year over their lifetimes.”

For families this translates into direct medical costs estimated at $29,000 a year; direct non-medical costs of between $38,000 and $43,000 a year; and indirect costs, such as lost wages for parents, of $39,000 to $130,000 a year. Read one family’s story, “The High Cost of Autism” by Theresa Wrangham.

With these sobering numbers in mind, shock waves are reverberating through the autism community because of recent news of proposed changes in the definition of autism. The American Psychiatric Association is in the process of editing the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) and their expert panel is currently reassessing the definition of autism. It is expected that the panel will tighten this definition and thus reduce the rate of diagnosis.

Proponents for the change contend that the vagueness of the current DSM definition of autism may have contributed to the increase in the diagnosis of autism. Opponents fear that families will be left out in the cold. Changing the definition of autism could effectively end the autism epidemic, according to Fred. R. Volkmar, PhD, director of the Child Study Center at Yale School of Medicine and author of a new analysis of the negative effects of the proposed changes. Quoted in the New York Times of January 20, 2012, Volkmar said, “We would nip it in the bud–think of it that way.”

Writing in The Health Care Blog, Anne Dachel says, “…these children aren’t going away regardless of what we call them…there will be lots of very angry parents who rightly feel that their children mean nothing to the medical establishment whose only aim is to make them disappear.”

Lisa Sykes, founder of CoMeD and mother of a son with autism says, “Deciding to count only some but not all of the children on the autism spectrum is no different than deciding to count some but not all of the children who get hit by a car.  It doesn’t mean they aren’t injured; it just means that we as a society are turning away from the victims and their very real needs.  This manipulation of the autism rates should unite advocates for children and for the disabled to challenge this change in the DSM-V.”

The New York Metro Chapter of the National Autism Association urges families, caregivers, and professionals affected by autism to contact the American Psychiatric Association and other organizations:

American Psychiatric Association

1000 Wilson Boulevard, Suite 1825

Arlington, Va. 22209-3901


[email protected] and [email protected]

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Peggy O’Mara  (101 Posts)

Peggy O’Mara founded in 1995 and is currently its editor-in chief. She was the editor and publisher of Mothering Magazine from 1980 to 2011. The author of Having a Baby Naturally; Natural Family Living; The Way Back Home; and A Quiet Place, Peggy has lectured and conducted workshops at Omega Institute, Esalen, La Leche League International, and Bioneers. She is the mother of four.

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