Several weeks ago, RFK Jr. was again in the headlines—this time for managing to insult almost anyone involved with at the autism community, while claiming to want to find the cause, and a cure for this disorder by September.
Forget for a minute that such a thing would be impossible, even if the Department of Health and Human Services threw billions of dollars into research, rather than cutting billions of research dollars and thousands of jobs of researchers— as this this Administration has done. What was most infuriating was his complete misconception of autism and disabilities in general.
Yes, people with autism may not write poems. But some do. And many "normal" (neurotypical) people do not. I doubt RFK or his boss have written one.
They may not get married. But many do. And many NT's (neurotypical people) do not, and those that do often have to try a bunch of times, and are abusive to their spouses, like he and his boss are reputed to be.,
He said people with autism will never "go out on a date." Many do. And if they don't, like the famous animal behavioral scientist, author and autistic person Temple Grandin, they may be very happy alone. Some NT's live alone too..
"They will never pay taxes," he said. Most do. For the ones that don't, they're just like Elon Musk and many billionaires in this country.
In my forty years of pediatric practice, I have talked with thousands of young people on with autism spectrum disorder (ASD), and with their parents, grandparents and siblings. I have learned that though people with autism are neuroatypical (NAT's)-- they all have characteristic difficulties with social communication, and interaction, may have stereotyped movements, sensory sensitivities, and often, some degree of intellectual disability-- they vary as much from individual to individual as do "normal" (NT) people.
Autistic individuals are often creative, bright, funny, and enjoy social relationships. They may be great musicians, dancers, scientists, engineers, teachers, athletetes, doctors or lawyers. Many of them communicate in unique ways, and they see the world through a different lens. Read The Reason I Jum: The Inner Voice of a 13-year-old boy by Naoki Higashida for a unique view of a non-verbal but bright and perceptive preteen with ASD.
But so did most of the men and women who made the greatest scientific and medical discoveries in history.
Many people with autism are kind and gentle. Some are not. Look at Musk--probably the most famous person alive who has "high functioning autism," which used to be called Asperger's Syndrome. He even said that empathy is the great downfall of modern democracies. HIs cruelty and glee in making hurtful remarks is legend.
When people on the autism spectrum say things that land wrong or misunderstand others, it's not usually out of meanness. It's that to many of them, the mirror neurons, those nerve cells that help us reflect on what others are talking about, are misaligned. To many of those on the spectrum, who are native English speakers, hearing English is like hearing a foreign language.
I've helped several of my patients with Asperger's who have studied foreign languages imagine that their English-speaking classmates and friends are speaking a foreign language which they have to learn how to interpret.
And for those children and teens who are non-verbal or nearly so, signing or tablets can save the day--as they did for Naoki. And, if they have highly focused special interests, we should engage them with our curiosity. I've learned a lot about washing machines from one boy with more severe autism. I also learned from his kind, patient parents, who became the experts who taught me a lot about ASD. And the techniques I learned to calm this young man's fears around exams and shots were helpful for me in treating other children.
If RFK Jr. were able to listen to the real experts on autism, those speech language pathologists, ABA therapist, teachers, doctors and parents who have devoted their lives to caring for these young people, and from those with ASD themselves, instead of the quacks who still push the discredited theories linking vaccines to autism, he could do a lot of good in his position.
And after listening, of course, comes funding, instead of cutiing. Sure research into possible environmental factors, though most of the etiology is thought now to be genetic. But funds for that research is being cut, not increased. We need increased funding for Medicaid and Social Security disability, and grants to help people with ASD make it in society. But that funding is being cut--dramatically. HHS should be hiring more experts to help those with autism, not firing them.
In the meantime, I'll keep speaking out and using my special skill in mind body medicine to help those with autism in any way I can. More on this in future posts.