Every April, the White House will usually come up with a statement or proclamation for World Autism “Awareness” Day or Month. The White House may even decide to “Light it Up Blue” for autism and call other Americans to...
Image description: The White House in 2020 lit in blue for World Autism “Awareness” Day with a red x over it. For the first time since 2017, the White House did not “Light it Up Blue” this year or endorse Autism Speaks. Every April, the White House will usually come up with a statement or proclamation for World Autism “Awareness” Day or Month. The White House may even decide to “Light it Up Blue” for autism and call other Americans to do the same, despite many autistic people rejecting Autism Speaks for its long ableist history, and how the color blue for “autism awareness” is harmful and reinforces the false idea that more boys are autistic than girls, or boys are “more autistic” than girls. But while releasing a proclamation and recognizing World Autism Day, for the first year of the Biden Administration, the White House did not “Light it Up Blue” like the Trump Administration has during its four years. So, looking at this year’s proclamation, how does this year compare to World Autism Day proclamations of years past? Is there any actual improvement in the language of the proclamation or the proposed actions behind them, or is it all just usual lip service from a politician?
The White House first started to “Light it Up Blue” for autism “awareness” in 2017 in response to a promise that Donald Trump made to Suzanne Wright, a co-founder of Autism Speaks, before her death in 2016. The White House also released a proclamation that year for World Autism Day, April 2nd, which heavily emphasized “treating” and “curing” autism while talking little about quality of life issues for autistic people. While the statement did mention that “For generations, men and women living on the autism spectrum have made extraordinary contributions in the fields of science, technology, art, literature, business, politics, and many other professions,” it is followed later in the same paragraph with, “My Administration is committed to promoting greater knowledge of ASDs and encouraging innovation that will lead to new treatments and cures for autism.” The statement ends with, “We are hopeful that our Nation’s efforts will result in significant advancements related to autism diagnosis and treatments in the months and years ahead. Ongoing efforts to scan the human genome carry significant potential to better manage the disorder and, ultimately, find a cure.” The proclamation ended with former President Trump urging all Americans to “light it up blue” for autism.
The White House continued to “light it up blue” for three years after 2017, the last year they did so was last year in 2020, after which the Autistic Self Advocacy Network published a brief statement on April 3, 2020 criticizing the Trump Administration for continuing to fail the autistic community by continuing to light it up blue year after year. While still problematic, the proclamation for World Autism Day 2020 from the Trump Administration was significantly better than the one in 2017, and ended with, “Together, we will work to promote more meaningful connections of respect and build a society where everyone has the opportunity to succeed,” rather than the 2017 one that ended with, “My Administration is committed to promoting greater knowledge of ASDs and encouraging innovation that will lead to new treatments and cures for autism.” However, the 2020 statement still contained pathologizing language about autism and still emphasized the need to detect treatments for autism. It also discussed the Autism CARES Act (formerly named the Combating Autism Act), of which the National Institutes of Health has the majority of the budget for screening and treatment research of autism, and very little money from the Autism CARES Act in comparison had gone towards research towards quality of life issues for autistic people. The statement did mark some progress in recognizing that autistic children grow into autistic adults, and included statements about the needs of autistic adults including housing needs and independent living, but the Trump Administration simultaneously made budget cuts to programs and services that disabled people, including autistic people depend on, such as healthcare services and programs as well as programs like SNAP that provide financial support towards food access for lower income disabled people.
How does the Biden Administration in 2021 compare to the Trump Administration’s proclamations for World Autism Day? The first step in the right direction was that the White House, for the first time since 2017, did NOT “Light it Up Blue” for autism or endorse Autism Speaks in their proclamation. In their statement for the 10th anniversary of Autism Acceptance Month, The Autistic Self Advocacy Network applauded improvements to the proclamation from the White House for World Autism Day this year, including urging the public to “learn more about the experiences of autistic people from autistic people.” It also included a statement about including autistic people in scientific research about autism. The proclamation ended with, “Today, we honor those with autism and recommit ourselves to providing them and their families with the investment, support, and care they need to live independently, fully participate in their communities, and live fulfilling lives of dignity and opportunity.” However, this year’s proclamation was not perfect, either. Like in years past, it still uses mainly person first language, rather than the identity first language that is preferred by the majority of the autistic community. The proclamation did discuss the need for earlier diagnoses and interventions for autism, which raises concern about a continued focus on biomedical research into “treating” autism and into harmful strict compliance therapies like Applied Behavioral Analysis (ABA) therapy. There was also no discussion in the proclamation about the need to rebalance the overwhelming amount of money from the Autism CARES Act from funding research into “treatments” for autism by the National Institutes of Health, to quality of life research. The proclamation did include the disparities that autistic people face in health care, education and services, especially for underserved communities, and that the administration is “committed to addressing these inequities in partnership with the Interagency Autism Coordinating Committee and the National Autism Coordinator of the Department of Health and Human Services.” This is a good sign, but there was no discussion about improving autistic leadership and input in resolving these disparities. While there were more self-advocates appointed to the Interagency Autism Coordinating Committee in 2020 as part of the reauthorization of the Autism CARES Act, there needs to be a rebalance of research funding and priorities to actually address the needs of the autistic community.
So, how could the next White House proclamation for autism be improved? First of all, declaring April 2nd as Autism Acceptance Day, rather than the current Autism Awareness Day, would be a good step to recognize that simple awareness of autism is not enough, and that it takes more than simply being aware of autism to truly accept autistic people. It would also be great for to use and embrace identity first language that the majority of the autistic community prefers to indicate that the presidential administration is listening to autistic voices by using our preferred language to describe ourselves. Also, no presidential administration should participate in “Light it Up Blue” or other ableist campaigns by neurotypical-led organizations like Autism Speaks that have harmed the autistic community. Both the Biden and Trump Administration in their proclamations had statements on interventions and “treatments” for autism, and for the following year, it would be better to shift the focus from autism research that focuses on biological causes, treatments and “cures,” to autism research that focuses on quality of life issues for the autistic community, that involves and is led by autistic researchers. The most important step however is action to match the words in these proclamations. Words about commitment to serving the autistic community mean nothing without taking meaningful action and change to help autistic people throughout the year, not just in April. The White House 2021 World Autism Day proclamation was an improvement from years past, but there is still improvement and progress to be made to show a greater commitment to the needs of the autistic community. Acceptance is an action, and I hope the Biden Administration, as well as future presidential administrations, listen to our voices and take action to involve autistic people in decisions, discussions, and research about us.