Julie Delegal: Let’s get to the right conversation about vaccines and autism

Last week, California Gov. Jerry Brown signed into law a provision that says California parents can no longer claim “personal belief” as a reason for not vaccinating their children. Pediatrician and state Sen. Richard Pan introduced the legislation in response to the measles outbreak that began in Disneyland this past December.

On Friday, parents rallied against the measure, asserting that vaccines are personal medical decisions that don’t warrant government intrusion. Sen. Pan, who was attending a Pennsylvania medical school when a measles outbreak sickened 900 people in that state, would beg to differ.

Since the law’s passage, the “debate” over vaccines has re-emerged, accompanied by the specter of a purported link between immunizations and autism. There’s not one, and doctors won’t waste any time putting parents who say otherwise in their place. But does the rehashed vaccine debate, in which frightened parents with autistic children are vilified as “anti-science,” deserve all of our attention?

Writers seldom miss opportunity to take a swipe at Jenny McCarthy, the Hollywood starlet who believes that vaccines cause autism. (They don’t.) McCarthy now invites comparisons to climate-change deniers, and worse.

But there’s a big difference between McCarthy and climate-change deniers. While none of us has seen the worst (yet) of rising waters and sun-baked crops, McCarthy is mother to a child who has autism. It’s a potentially devastating neurobehavioral difference that can terrify families.

It’s the severe effects of the disorder that give rise to the anger and the passion — and science simply can’t answer anger and passion.  Autism disrupts communication and other social interactions, the very abilities all teaching is based upon. If you’ve ever had a child who looked right through you, who appeared not to hear you, who seemed completely unreachable — then you know the terror.

To be clear, living with autism doesn’t excuse McCarthy from promoting misinformation about immunizations. Again: our best science tells us there is no causal link to autism. Take it from me, a self-confessed, former anti-vaxer.

I don’t apologize for raising questions several years ago. It was the American Academy of Pediatrics, after all — and not parents of children with autism — that recommended the removal of mercury-based preservatives from baby shots in 1999. And it took nearly a decade before research finally quelled concerns about the mercury-autism link. In case you missed it, there is no link. Our best science also says there’s no link between the MMR, which has never had mercury, and autism.

Science will never be enough for many parents who saw their children’s autistic symptoms emerge during toddlerhood, precisely the period during which booster shots are given. Science can’t address the profound sense of grief and anger that many parents feel in the wake of their children’s diagnosis.

But it’s getting to the point where the vaccine “debate” is overshadowing the conversation we should be having in this country, the conversation we’ve never had.

It starts with this question: What are we doing to make our nation a friendlier place for people with autism?

Some parents of young children on the autism spectrum will reject that question out of hand. They want a “cure,” an enzyme, an antidote, an anti-viral perhaps — something, anything that would reverse what they perceive as the injury or illness.

We older parents don’t want to squelch their zeal, insofar as it’s that zeal that helps drive research. We need research. But we also know that children and their families can’t wait for research. Children with autism — all children, for that matter — need teachers who understand how they learn. And they need them now.

Early, Applied Behavioral Analysis (ABA) interventions helped us connect with our child; it helped us reach him in ways he could understand, thanks to the Jericho School in Jacksonville. Accepting him — unconditionally — as a whole and complete human being, autism and all, was also key. The Option Institute in Sheffield, Mass., helped us on that front.

It’s the social connection — or, more precisely, the difficulty connecting — that most often defines autism. We think of people with autism as being insensitive to social stimuli, as missing important social and language cues, as being aloof of cut off.

We’re learning though, that people with autism may be much more sensitive to things you and I may not even be aware of: the hum of the traffic outside, the whir of the ceiling fan, the nearly undetectable flicker of a fluorescent light.

How does a person with autism begin to filter the marvelous and terrifyingly overwhelming nature of the world?

In the midst of it all, how does he begin to decode the rest of us neuro-typical humans, when we seem to value arbitrary social rules that aren’t written down anywhere?

One has to pick and choose one’s focus. The washing machine is much more predictable, more decodable, more “learnable,” perhaps, than a mother at her wit’s end.

Parents of children with autism in this country still have to fight their insurance companies to get coverage for ABA-based and other services. They still have to fight their local schools to have their children taught according to science-based best practices. Talk about your science deniers.

Maybe, just maybe, if a fraction of the energy that’s directed into promoting or fighting vaccine policy were instead directed toward serving people with autism, the neuro-behavioral difference would begin to lose its terror.

And the other conversation could take center stage.

Each of Julie Delegal’s three children has been fully vaccinated. A University of Florida alumna, she’s a contributor for Folio Weekly, Jacksonville’s alternative weekly, and writes for the family business, Delegal Law Offices. She lives in Jacksonville. Column courtesy of Context Florida.