I spent many sleepless nights in the months after my son’s autism diagnosis fretting whether I could have done something to prevent it. I recounted, in obsessive detail, the course of my pregnancy, the birth, and the two years of child-rearing that led to the moment when our pediatrician confirmed my fears — and life as I’d known it tilted off its axis. In my spare waking hours, I pored over research that exhausted me mentally and emotionally.
It was a painful period of reckoning — and it’s the reason I vehemently oppose a commission to investigate a link between autism and vaccines, as proposed by President Trump. This link has been thoroughly disproven, and it is distracting and irresponsible to pursue it. The original study upon which the myth of an autism-vaccine link is based was retracted by The Lancet for being unethical and scientifically invalid; indeed, The Lancet editor publicly declaimed the study results as “utterly false”. Subsequent studies also found no association. Instead of wasting money and time on chasing phantom causes, we should use our resources to assist the millions who live with autism every day. And we should lay to rest the idea that vaccines have done anything but save lives from the misery of measles, mumps, polio, and other diseases that affected millions.
It is, ironically, the very lack of these diseases in our present life that makes parents feel they can safely refuse to vaccinate their children. Parents want to protect their children in any way they can, and the risk of contracting mumps or measles can seem more remote than that of autism, which now affects one in 68 kids. I know many parents who suspect the autism-vaccine link is false but still choose not to vaccinate; they simply don’t want to take the chance.
And here is where creating a commission to investigate a spurious link between vaccines and autism sends two dangerous messages: The first is that we are correct to worry about vaccines, despite the science verifying their safety. And the second is that autism is a terrible condition to be avoided at all costs. As a mother, that second message enrages and terrifies me, on behalf of my son and the many people I know with autism. How awful to live in a world that tells you it is better to risk getting a life-threatening disease than to be like you.
The autistic person’s struggle to overcome a state of constant overstimulation is one that should be admired, not maligned. The modern world is fast, brash, clamorous, and intense — and autistic folks experience this more than anyone. Perhaps this should be heeded as a signal that the world could use a little calming. Perhaps, when it comes to autism, our time and energy should be spent more on reducing stigma and welcoming autistic people as valuable members of society, with experiences and ideas to contribute that we all could learn from. We could do that by putting money into the autism community itself — into early intervention, better diagnosis and screening, better insurance coverage of treatment, more support at school, respite services for caregivers, housing and job opportunities for adults with autism. Like anyone else, people with autism need to be supported to exist successfully in the world — and to change it for the better. That’s an investment that will pay off for everyone.
Jessica Berthold is communications manager, Prevention Institute.
Image credit: Shutterstock.com