I understand if it is hard to keep up with the news coming out of this White House. I don’t envy newsroom editors nor the White House Communications Office. With so much breaking news, you may have missed the episode this week where the President expressed his alarm with the growing rate of autism diagnoses. The President should be alarmed by what we have learned from the growing rate of autism diagnoses. As a former White House Presidential Appointee with a background of knowledge on both autism and how epidemics grow, I can tell you that he absolutely should be. But, it’s not for the reason that he thinks.
On Tuesday, the President held a Parent-Teacher Conference Listening Session at the White House attended by Vice President Pence, Secretary of Education Betsy DeVos, Senior White House Advisor Kellyanne Conway, and teachers and school administrators from across the country.
One particular exchange with the President caught my attention. It was with Dr, Jane Quenneville, principal of the New Kilmer Center in Vienna, Virginia.
The exchange was highlighted by Jesse Singal of New York Magazine:
“Have you seen a big increase in the autism, with the children? So what’s going on with autism? When you look at the tremendous increase, it’s really — it’s such an incredible — it’s really a horrible thing to watch, the tremendous amount of increase. Do you have any idea? And you’re seeing it in the school?”
Jane replied — again, in a way that seems a bit noncommittal vis-à-vis Trump’s claim — that the rate of autism is something like 1-in-66 or 1-in-68 children. To which Trump responded:
“Well now, it’s gotta be even lower [presumably meaning higher, rate-wise] than that, which is just amazing — well, maybe we can do something.”
“Those who advocate for sound, evidence-based research about autism are extremely alarmed about Donald Trump,” wrote Singal. Indeed, as principal of a school focusing on special education, Dr. Quenneville seemed visibly uncomfortable with the frame laid out by the President. The reason is that the ‘autism epidemic’ is a misnomer, and one that educators like Dr. Queenneville recognize is blocking focus on providing the services that autistic people need. The developing scientific consensus over the past few years is that the number of autistic people has remained static. What has increased is the number of diagnoses. This is due to our better ability to recognize autism in people either previously misdiagnosed with other conditions, or ignored altogether.
“Misdiagnosed, overlooked, and ignored by researchers: Older folks with autism,” tweeted journalist Steve Silberman last year. In his book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, Silberman laid out the scientific evidence that demonstrated that as diagnoses of autism have risen, the diagnoses of other conditions, previously incorrectly ascribed to autistic people, have proportionally decreased. There is no epidemic. What we have is an awareness. If this White House is to be alarmed by autism, it should be an alarm regarding the lack of services that our nation provides to autistic citizens and their families.
I raised the issue of the ‘autism epidemic’ one day a few years back just outside the Situation Room in the West Wing of the White House. I was having lunch in the White House Mess with a contact from the White House Office of Personnel, the HR office for all White House staff and Presidential Appointees. It was there that I disclosed to the White House that I had recently been diagnosed as autistic. This came after a years-long search with doctors to find out “what was wrong with me” (a phrase I used at the time, but now cringe at).
The response from the White House was surprising, and it changed my life. I was not only offered accommodation, but was encouraged to develop my autistic strengths in both service to my country and as an advantage in my career. Indeed, my contact whom I was having lunch with had known me most of my professional career and was able to point to the places where being autistic had been a benefit in my work. That was something that I had never seen before.
I wasn’t alone. In disclosing to the White House, I learned that I was actually the second openly-autistic presidential appointee in the Obama Administration (the first was Ari Ne’eman). I also learned that the White House had already taken steps to improve the support provided to autistic people so that they could lead our lives more fully.
I had wasted so much of my life struggling without the support I needed, and not tapping the tremendous advantages and strengths I possessed that came with being autistic. I now laugh when I realize how much money the federal government and leading industries spend on training critical employees how to ‘think autistically’ even if they don’t realize that is what they are doing. The truth is that a higher diagnosis rate of autism is a good thing. It means that we are recognizing autism in more people, and those people now have a chance to access early the services, accommodations, and coaching that I never had. The only autistic epidemic our country faces is not pacing our services to fully meet the needs of our autistic citizens.
If the President is alarmed, let us capitalize that. There is no need to make this a partisan issue. Let us make it a teachable moment.
Presidential candidate Hillary Clinton released a groundbreaking autism plan last year that should still be embraced. It focused not on a cure, but on providing services – especially to underserved autistic adults. Her sentiment has been echoed by Republicans like Ohio Governor John Kasich who has called for mainstreaming autistic people into society. “We’ve got to figure out how to fix it,” Kasich said last February in a town hall to the mother of an autistic child. The ‘it’ that Kasich referenced that we should fix was not autism itself, but the level of services that we provide.
This is not a partisan issue. One of the factors that has allowed me the support to grow in my confidence as an autistic adult has been a Republican friend with an autistic son. She presses politicians in her party just as I press politicians in mine, and where we can work together to provide a bipartisan voice – we do. In our current hyper-partisan climate, let’s not miss this rare opportunity to work across the aisle. Let’s work together to build political support for autistic services.
Even to those who believe that the rate of autism is rising, I say ‘Fine’. If you’d like to spend efforts on figuring out why, fine. But, first let’s work together to tackle the immediate need of providing the services that autistic people and parents are loudly saying that we need. Let’s start there. I think that is something on which we can agree.
After all, the President said himself at the roundtable:
As I said many times in my campaign, we want every child in America to have the opportunity to climb the ladder to success. I want every child also to have a safe community, and we’re going to do that very much. We’re going to be helping you a lot — a great school and some day to get a really well-paying job or better… it all begins with education.
It all begins with education. The President said it best himself. So, let’s take this time to educate not only the President, but all of our policy makers about the true autism epidemic: the need to increase services and support to autistic people and their families. Take five minutes to find your elected officials and write them. In an era where we are so divided, let’s savor this opportunity to work together.