Listen to thisAs the mother of a young son with autism, I am livid at the notion that money and time would be spent on investigating long-debunked claims that vaccines cause autism, as would happen if President-elect Trump creates a new commission on vaccine safety headed by a prominent vaccine skeptic. The vaccines-cause-autism fallacy has long been put to rest, and that investment of time and resources would be better spent within the autism community and on pressing public health issues. And as the communications manager of a public health organization, I can confirm that reigniting this issue sends exactly the wrong message.
The "research" purporting to find a link between autism and vaccines has been thoroughly discredited and disproven by countless studies that failed to replicate the results of Andrew Wakefield's original, falsified "study." What's more, that original study was retracted by The Lancet, the medical journal that published it, due to serious scientific flaws and ethical violations, and Mr. Wakefield lost his medical license.
Unfortunately, the damage has already been done, as the tentacles of this study's false findings continue to alarm parents whose natural instinct is to protect their children. I know many parents who suspect there is no danger from vaccines but still choose to forgo them – why take the risk? Only in an era when vaccines have been so successful in saving lives and preventing illnesses like mumps, measles and polio could the idea of "risk" be so tragically misplaced. More cruelly, the lie about a vaccine-autism link has sown doubt and guilt into the minds of many parents of children with autism, who fret about the cause of their child's condition and whether there is something they could have done to prevent it. The fact is, we still don't know for sure what causes autism, but the best research suggests a complicated interaction between genetics and the environment. If we want to tackle autism, let's focus on pursuing scientifically valid leads – instead of reanimating debates over proven dead ends, like a link between the measles-mumps-rubella vaccine and autism.
Better yet, let's take a preventive approach that not only acknowledges the many people already living with autism in this country, but provides resources that enable people with autism to thrive in their families and communities. The need is great, for all with autism but particularly those in lower-income communities: for better diagnosis and screening, for early intervention and ongoing treatment, for better insurance/Medicaid coverage, for school supports, for respite care for caregivers, for housing and employment options once autistic people age out of the school system, and for embracing autistic people as full members of our society. I know firsthand that fighting for your child to get adequate treatment and appropriate education is a full-time job. I know – from speaking with many parents in my community – that it becomes much harder once your autistic child is out of secondary school and in the real world, where the employment rate for autistic people is abysmal and the quirks seen as "cute" in a young child are viewed in an adult as off-putting or even dangerous. And I know that I'm a privileged, well-educated woman with a decent salary – how much more overwhelming this fight for your child must be when you face additional discrimination or lack the resources to fully mobilize the limited systems and supports that currently exist? Instead of throwing money and time at a conspiracy theory that's long been stripped of credibility, let's devote our resources to equity for all with autism.
And let's work, too, on clarifying that autism is less a problem to fix than a way of being that the world needs to embrace. The biggest problem my son and family face, by far, is interacting with a world that doesn't understand or appreciate him. This is why some autism advocates say they were born on the "wrong planet." Autistic people struggle most with navigating a world that's not designed for them – a world that is too loud, too bright, too fast and often, too unforgiving of differences. Are autistic folks always blameless? Of course not. My son behaves in ways at times that he must be held accountable for – and he is. But it helps to have context and empathy, to understand where the behavior comes from, as well as the struggle he endures daily to calibrate to an environment that his brain isn't wired for.
If President-elect Trump is truly concerned about autism, there's a
lot of work to do in the real world. A good place to start is to seek
the counsel of those who experience autism every single day.
By
Jessica Berthold
19 January 2017
Jessica Berthold is the communications manager of Prevention Institute, a public health nonprofit in Oakland, California.
http://health.usnews.com/health-care/for-better/articles/2017-01-19/lets-get-real-about-autism
