Julie Delegal: Autism, Jenny McCarthy, and me

It’s been a long time since I’ve written about the long-suspected, but largely disproven, link between vaccines and autism.

Jenny McCarthy, the model, actress and co-host for the television show “The View”, is mother to a child who has an autism spectrum disorder. She’s taken some hellish Twitter flack lately for her belief that infant vaccines cause autism.

Like Jenny, I joined thousands of parents who spoke up and demanded answers several years ago. Like Jenny, I don’t apologize for it. Unlike Jenny, I’ve had to let it go.

People with autism spectrum disorders have brain differences that make communication and other social interactions extremely difficult. Early behaviorist interventions can mean the difference between a near-normal life and institutionalization for many children on the spectrum; for others, the autism is so profound that intervention doesn’t do much good.

The idea that this potentially horrible disorder might be caused by vaccines naturally created uproar.

The answer we got consistently from the medical community — in the absolute absence, at that time, of any research — was abject denial of a vaccine-autism link. I first became alarmed in 1999, when the American Academy of Pediatrics called for the removal of mercury from infant vaccines, following warnings about pregnant women eating mercury-laden tuna. In 2008, a study published by the Journal of the American Medical Association finally quelled my concerns.

While epidemiological studies like this one can’t technically disprove a causal connection, we can make the following inference: since the autism rates continued to increase after Thimerosal (a mercury-containing preservative) was removed, mercury from shots probably didn’t cause autism. I accepted then, and I accept now, the implications of this study. Keep in mind, though, that it wasn’t published until nearly a decade after the American Academy of Pediatrics raised the specter of danger in the first place.

Prior to 2008, those of us who questioned our physicians, who spoke out in print and on the Internet, had good reason to raise a ruckus.  We researched autism feverishly in between trips to the doctor, the psychologist, the behaviorist, and the occupational therapist.

We relied on the now-debunked science of Dr. Andrew Wakefield, who professed a link between the measles, mumps and rubella shot (MMR) and autism. He was published in the respected journal Lancet, after all.

We relied on the physicians and nurses who noticed that the neurological symptoms of mercury poisoning resembled autism. We relied on the vaccine courts that, in rare cases, found evidence of a link. Our worries were quite logical and well founded.

And the stakes couldn’t have been higher. Autism devastates families. The stresses it brings precipitate divorce and illness. Sometimes its effects on a child are ameliorable, as in our family’s case; other times, through no fault of the parents, they’re simply not.

Some nonverbal individuals with autism bite themselves bloody, bang their heads against walls, and destroy property in their frustration. Temper tantrums in a 3-year-old morph over the years into violence and aggression in older children and adults. People with Asperger’s syndrome, a condition long characterized as the higher functioning end of the autism spectrum, share many of the brain differences that their more severely affected cohorts have, and struggle to function in a world where communication is currency.

I still get furious about autism, but it’s not because I believe vaccines cause it.  I don’t. Our best science says there’s no causal link.

I get furious about autism because its prevalence has almost doubled over the past two decades — it’s increased tenfold over the past four decades — and our national and state leaders don’t seem to care.

Despite working as much as we can to make things better in the public schools, on the whole we’re still nowhere near best practices. Though we struggled to get laws passed to make health insurers pay for early intervention services, families still have to fight to make it happen, and those are just the families with insurance.

Some colleges are making good headway serving students with higher functioning forms of the disorder, but in the scheme of Manifest Destiny on the autism “frontier,” we haven’t even reached Missouri.

We’re constantly being called away from our work to pick up the pieces of a day gone terribly wrong; we lie awake at night praying for long lives so that our other children won’t be responsible for their sibling; some of us cry as our adult children lock themselves away in depression and despair, never wanting to again experience the horror they endured in a world that rejects them. Meanwhile, we try to keep up with the research.

Parents need help. And while I don’t want Jenny McCarthy to speak for me or for the autism community, I know this: unless you’ve lived through it, you have no idea. So, to those of you on Twitter who take delight in tearing down parents of children with autism: back off. Calling people stupid never has, and never will, win their hearts and minds.

Ask yourself: Do you think your community is ready to serve the coming onslaught of autistic children growing up? I can assure you, we’re not. Publicly vilifying Jenny McCarthy is a waste of precious energy.

Julie Delegal is a writer who lives in Jacksonville, Fla. Though it was a slower-than-typical process, her children have been fully vaccinated. Column courtesy of Context Florida.