This is an image of Donald Trump sitting at a table and speaking Betsy DeVos is sitting to his right.

President Trump, There is no Autism Epidemic

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.

23 thoughts on “President Trump, There is no Autism Epidemic”

  1. Do u think autistic children should be mainstreamed? I don’t. My grandson in 7th grade went from public to a special ed school. His math scores went from 2nd grade level to 7th grade level in 5 months. His social skills progressed steadily. Public school teachers simply didn’t have the skills or the time to work with him. I am all for special schools to work bring out the best in these children.

    1. I’m an autistic adult. I am happy that I went to a public school. Research actually shows that disabled students, including autistic students, do better in integrated settings. It better equips students for when they’re not in school anymore.

        1. There is 30 years of research on segregated vs. inclusive settings for people with intellectual and developmental disabilities. These documents share what best practices are based on evidence. And all of the evidence points to us living better lives when we get to live in the same neighborhoods, go to the same schools, and make the same choices everybody else gets to make. Even if that means we need a little extra support.

          “Most research studies examining educational
          outcomes have found positive effects for inclusion. Baker and colleagues reviewed three metaanalyses
          that addressed the issue of the most effective setting for the education of students
          with disabilities. A small-to-moderate positive effect for inclusive placement was found in all
          three meta-analyses (Baker, Wang, & Walberg, 1994). More recently, Waldron, Cole, and Majd
          (2001) investigated the effects of inclusive programs for students with high incidence
          disabilities and their typical peers. This two-year study found that 41.7% of students with
          learning disabilities made progress in math in general education classes compared to 34% in
          traditional special education settings, without the presence of nondisabled peers. Gains in
          reading were comparable in both settings. When comparing progress with their typical peers,
          43.3% of students with disabilities made comparable or greater progress in math in inclusive settings versus 35.9% in traditional settings. Similar academic gains were reported in a study examining the use of class-wide peer tutoring on the achievement of students with high incidence disabilities in inclusive classrooms. Significant increases in spelling, social studies and other academic indicators were observed (Pomerantz, Windell, & Smith, 1994). Positive educational outcomes are not in the area of academics alone. The National
          Longitudinal Transition Study examined the outcomes of 11,000 students with a range of disabilities and found that more time spent in a general education classroom was positively correlated with:

          a) fewer absences from school,
          b) fewer referrals for disruptive behavior, and
          c) better outcomes after high school in the areas of employment and independent
          living (Wagner, Newman, Cameto, & Levine, 2006).

          Meta-analyses and comparative studies examining the educational outcomes of students with
          low incidence disabilities in inclusive versus segregated classrooms have found either no
          difference in outcomes or positive effects for inclusion (Hunt & Goetz, 1997). There is a body of
          empirical evidence that shows students with severe disabilities are able to acquire skills in a
          range of areas within inclusive classrooms. McGregor and Vogelsberg (1998) report that
          students demonstrate higher levels of social interaction with typical peers, social competence
          and communication skills improve (e.g., Hunt, Alwell, Farron-Davis & Goetz, 1996), and
          academic gains are made (McDonnell, Thorson, McQuivey, & Kiefer-O’Donnell, 1997).
          For students with high incidence disabilities, a higher percentage make academic progress in general education classes compared to students in traditional, resource settings.

          In addition, Kliewer and Biklen (2001) found that inclusive learning environments facilitated the acquisition of literacy and adaptive skills as well as enhancing students’ social relationships. In this domain of social outcomes, Fisher and Meyer (2002) conducted a two-year longitudinal study to examine social competence for 40 students with severe disabilities in inclusive and self contained classrooms. Students in the inclusive settings had significantly higher mean scores on the ASC (Assessment of Social Competence) after a two-year period, and although students in self-contained classrooms made gains, they were not statistically significant. Falvey (2004)
          notes that “no studies conducted since the late 1970’s have shown an academic advantage for students with intellectual and other developmental disabilities educated in separate settings.”

          http://www.mcie.org/usermedia/application/6/inclusion_works_final.pdf

          The same is true when it comes to living and working with people who aren’t disabled.

          https://aaidd.org/docs/default-source/policy/community-living-and-participation-for-people-with-intellectual-and-developmental-disabilities-nbsp-what-the-research-tells-us.pdf?sfvrsn=0

          Anecdotally, if you ask any of us, particularly those of us who are now adults, whether we’d rather be in the same class as all of the other students or the separate special class down the hall or even in a different building, the vast majority of people who are capable of doing so will communicate they’d rather be with all of the other kids. I mean, wouldn’t you rather be treated like you’re normal instead of singled out and separated? We’re not that different from you.

          1. I do have a disability and my life is so very much easier when it is acknowledged that I am different and have needs that are different. I think that inclusion isn’t always a good goal and as a teacher of children with autism, I can tell you from experience- they most often prefer to stay in my classroom away from the neuro-typical children who can be unpredictable and scarey. I don’t think there is any TRUTH which works for everyone.
            I also don’t think it’s true to assume we all seek to be part of the included.

      1. Thank you for your thoughtful feedback. I feel the most important thing missing from dialogue about individuals with ASD are the actual insights of individuals with ASD.

        1. That is the entire purpose of this site. All of the articles are written by people who are autistic, developmentally disabled, mentally ill, etc.

    2. Additionally, autistic development is often pretty uneven — It’s called a developmental disability for a reason. I didn’t read until I was in 2nd grade. Then I picked up novels. Nothing “special” involved.

      Instead of a “special” school, public schools should be providing adequate support in the classroom. Every student is entitled to free, appropriate public education.

    3. It solely depends on the child and the community. This is not a “one size fits all”. Segregation of education of disabilities will make it harder to request integration into mainstream culture. Think of it this way, you educate your child and your child educates everyone who interacts with him and has the power to influence others.

    4. Where are these special schools? The public school system I’m Baltimore was the only place offering my daughter services?

    5. Bless your heart…my son was 2e, gifted and learning disabled. He’s really interesting, intelligent, and is more than able to think for himself, and to think critically. He just had trouble with output and memorization. I would have given the world to have sent him to a school started by a mother who had once been the director of Special Education in a public school district. I and my husband were Sped and regular classroom teachers in public school. There are some things they just can’t do. One of them is 2e kids. Just got to keep shoving them into those cookie cutter boxes. Things were pretty good, and he had magnificent teachers, but at the end of middle school, we had to bring him home and homeschool. At age 17 he went to tech school for the hands-on learning he craved. He now is a CNC programmer of machine tools. He would have flunked out of public schools. (Think John Elder Robison, his hero, who left school at age 14 and taught himself.) I am so thankful we had the wisdom and money to do what we were able to do for him. We couldn’t afford private school.

      We quite taking kids the vocational route, like we were ashamed of them. That’s when Autism-lite labels started rising. It’s a darn shame, too, because schools are failing them, both literally and figuratively. I look forward to and end to “Race to the Top”. College prep doesn’t prepare for the real, hands-on world. Somebody has to be able to create. It can’t be “all in the mind”.

    6. I just want to let you know that “special ed” schools are public schools. Students all have individual needs, that’s why we have IDEA and special education laws. Some do best mainstreamed and some do best in a special classroom or school. I’ve been a school psychologist for 32 years, and I have a son who has Asperger’s. I’ve worked with many autistic kids (and there is a definite increase that can’t be explained by a wider diagnostic category exclusively–there are genetic reasons that we are seeing a rise in numbers); each one is an individual with unique needs. I also wrote a book about raising my son and working as a psychologist. I think you will enjoy Beyond Rain Man!

    7. I think that autistic children should be mainstreamed. My 9 year old son, who is autistic, goes to public school and is in a mainstream classroom. He has been included in a mainstream classroom since he started school. He has his issues for sure but has done very well. He is in third grade and can do middle school/high math. Being in a mainstream classroom in a public school has done wonders for his socialization. So, has Cub Scouts. I constantly tell my son that he is not different but differently abled. My son thinks he is just as good as a “normal” child. I am all for public schools to bring out the best of my son and others like him.

    8. I am an autistic adult who went to public school. No, I do not think autistic children should go to public schools
      It was a nightmare childhood for me.

  2. I agree it’s not one size fits all when it comes to integrating autistic students into mainstream education. It depends completely on the student, the local schools, the teachers, the accomodations & services available to the student, any outside therapies that may or may not be necessary/unavailable. My son is in public school & because of where we live, the trained staff at his school & their willingness to accommodate him, getting lots of social interaction that he really wants ( it’s not always easy for him, but he is really social & gets depressed when he’s not around other kids enough) & the fact he’s on an IEP, I think public school is the best choice for him. We push him to try hard & he is at the top of his class in math & reading, he has friends, he participates in lots of school activities. If we lived somewhere else this might all be a completely different story. I’ve even considered homeschooling him but I know deep down that is not a good fit for him if I want him to do well in life & be happy. And I totally agree with this article- there has probably been no increase in autism- just a shift in awareness & diagnosis criteria; & with the growing awareness more people who fall within the set criteria are getting a diagnosis so they can secure services they need to live an easier, more fulfilling life. And isn’t that what everyone wants?

  3. I would like to share that Autistics and other disabled folks came to help transform the strange rules in teh manmade world. these rules are completely unnatural to our human life rhythms and are the cause of the distressed situations of the world. It isn’t about changeing us to live in the mainstream, We are here to be the change!

    Check out Permaculture, One Straw Revolution, Grid Beam, Small and TIny House Movements. Ecosystem Restoration Camps
    https://permies.com/t/61247/Ecosystem
    -restoration-camps-John-Liu

    there are so many ways to not mainstream someone and allow them to thrive and flourish in this world.

    EACH SOUL IS INDIVIDUAL. we each have our piece of the puzzle to share and it is of utmost importance that we are each honored and allowed to share.

    ~~~~~~~~~~~
    Folks think just because we are in a human form, that surely we must be able to AND REALLY WANT TO do all the ‘regular mainstream’ things in life.

    Consider AFFINITY THERAPY! this is about allowing the person’s affinities to help create their life.
    ~~~~~~~~~~~~~
    I am sixty year old Autistic 2e, growing up in the 1950’s through 70’s .with a hellish school history,. as well as a hellish adulthood filled with CHRONIC homelessness, Chronic illnesses, underemployment/unemployment and all manner of abuse in the mainstream world.

    (check out Aces Too High and resources for help with healing)

    Having been sexually abused as a child, this set me up to think that sex was normal at a young age, and so i acted out with heavy petting and intercourse from a young age. NOT safe or normal. and the teachers and all adults blamed me for this behavior, when boys were taking advantage of me.

    I experienced bullying from teachers, clergy, students, adn dozens of employers. as well as just in everyday life because i am ‘different’ in my communication and abilities to function in everyday life.
    ~~~~~~~~~~~~
    I need help with Activities of Daily Living. and much more.
    ~~~~~~~~~~~~
    Some folks are TOO GENTLE for this world and need other kinds of learning supports.

    I would have done so much better in a QUIET homeschooling or hands on/apprenticeship learning situation. or other type of learning, such as Grid Beam gridbeam.com is an amazing way to build things without having to have language or other skills.

    Growing Bamboo which has over 1500 documented uses. livng near bamboo and creating and building with bamboo would have created an entirely different life for me.
    ~~~~~~~
    i did horribly in a regular public school system, as all the main courses–all maths, grammar, literature, US history/civics, etc WERE NOT my propensities.

    THe only reason i was able to keep mysefl going to school was for my creative propensities of chorus, and such. .

    My talents were/are creative, non verbal, non linear.
    ~~~~~~~~~~~
    Everyone is SO GUNG HO about mainstreaming children into the Public School systems and the Allistic (non-autistic) Consumeristic Nightmare/how to control the masses.

    DO you actually know the origins of mass education of children?!? it is not pretty. MASS Nationalist Programming.
    Pledging our tiny young naive hearts and minds to National FLags. all this came about to control us, not to allow individuals to be honored. To grow us up to be obedient consumers.

    Read up about the Bellamy’s in the late 1800’s and the Theosophical SOciety ideas for ‘utopia’, among many others. I will give you a starting point and you can do your own DUE dilgence.

    rexcurry.net
    this is just a launching point. my brain is too tired to give more links. you are all good at researching online. so have at it.

    The ‘education/propaganda experts’ in the usa was where germans got their ideas for stiff armed Salutes to the Flag (Yeah, the usa used it from late 1800’s to 1930’s–before it was ‘sullied’ by the germans),
    unwavering/unquestioning loyalty to experts and leaders, the swastika, Eugenics, and Concentration Camps (the germans loved how the US made the First Nations peoples to live in dire circumstances, take and rape their Lands, kidnap their children to Schools/Institutions to abuse their heritage out of them. force them to speak English and take away their real names. Kill them and bury them in mass graves…us and canada…
    ~~~~~~~~~~~~~~~~~~~
    WE ARE ALL THE CHANGE. NEW WAYS OF BEING are birthing now.
    THE times, they are a changing.

  4. Every time I see the words ‘autism epidemic’ presented in a negative light I hiss like an angry cat.

    Because yes, autism diagnoses are rising. That is GOOD. But it does not mean there are more autistic children. It means that we have the resources and education to let fewer autistic children fall through the net.

    I got an autism diagnosis in my late twenties after two decades of not understanding why I didn’t seem to ‘get’ things that other people did and falling into a fairly typical pattern for un-diagnosed female autistics (eating disorders, mental health issues etc).

    I went through some of the criteria used to diagnose me with my mother, who is in her seventies. She’s very likely on the spectrum as well. According to her, one if not both my uncles meet the same criteria. In fact, according to her there have been a number of older, now deceased, family members who were labelled ‘difficult’ because of the same traits I exhibit. Diagnosing dead people based on my a variety of family stories is problematic, I know, but I’ve gone through the family tree. I have second and third cousins who have also been diagnosed.

    I was able to give my 70 year old mother a vocabulary she didn’t even know she needed but which has helped immensely. It’s helped me immensely, starting with the understanding that I am not broken.

    So yeah, I am all for there being an autism epidemic. I want every autistic child, especially female and non-white autistic children to get the help they need.

  5. The bureaucracy of the IEP process is definitely part (if not all) of the problem. It is used to slow roll the process of offering services.

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