This post is by Mark Roithmayr, Autism Speaks’ President.
Earlier this week I had the honor and privilege of traveling to Washington, D.C., for special ceremonies to commemorate the 20th anniversary of the Americans with Disabilities Act (ADA).
The term “landmark legislation” is greatly overused, but like the Civil Rights Act of 1964, this law literally changed life for millions of people. The ADA has helped level the playing field for people with disabilities in this country, providing important civil rights protections and equal opportunities in the workplace and elsewhere.
As I took part in ceremonies at the Capitol Rotunda and, later, the White House, standing among other advocates for various causes, I found myself reflecting on those past two decades.
Twenty years ago, America barely recognized the word autism, nor understood what it meant for individuals to live with autism. Autism was absent from those founding moments two decades ago. Yet during the ceremonies this week, autism was acknowledged over and over again by elected officials, colleagues and advocates alike. From the floor of the House, Representative Patrick Kennedy referenced autism as one of two federal imperatives for increased funding. Later at the White House ceremonies, President Obama’s Domestic Policy Director Melody Barnes cited the autism movement as a being the central part of today’s disability movement. Next, actor Robert David Hall –himself a double amputee following a devastating car accident – took the opportunity to discuss his twin nephews, both on the autism spectrum, while introducing President Obama, poignantly telling the story of how his brother and sister-in-law have to “climb mountains every day.”
Listening to the group of eloquent speakers, all I could think about was how incredibly far the autism advocacy movement has come in just a few short years. Not only was the day remarkable for the recognition of autism and its overwhelming prevalence in our society – our 1 in 110 children – our 1 in 70 boys, but that these numbers have climbed to new heights being diagnosed more often than childhood cancer, juvenile diabetes and pediatric AIDS combined. There is no doubt that autism is now at the fore of the public’s consciousness as a disorder that is recognized as a national health crisis and a top public health priority
But the ADA ceremonies were about something even larger than our autism movement. It was a day to recognize disability rights as a core civil rights issue and a cause not for partisanship, but for uniting humanity at large. The quotes ran from Thomas Jefferson to Martin Luther King. President Obama honored President George H. Bush who passed the original legislation. Representative John Boener (R, OH) applauded James Langevin (D, RI) – the first quadriplegic to serve in the U.S. House of Representatives – who served as Speaker of the House for the day, the first time that Congress was presided over from a wheelchair.
Reflecting, I truly believe the ADA commemoration was about building on our autism victories, small and large, toward our collective future. The abilities of our community, our children, our teens, our young adults and our adults, are extraordinary and we have the collective will and the moral imperative to create an even better future. The path is clear.
- Our autism community has the ability learn – but we need to ensure accessibility to education through the life span.
- Our autism community has the ability to work – but we need to ensure accessibility to jobs.
- Our autism community has the ability to live independently – but we need to ensure accessibility to housing; and not least,
- Our autism community has the ability to be part of the wonderful social fabric of America – but we need to ensure access to community resources.
In the words of Thomas Jefferson, “the pursuit of happiness is an inalienable American right” and the autism community deserves no less.
We also encourage you to read Celebrating the 20th Anniversary of the Americans with Disabilities Act with Substance blog post by Kareem Dale.
“Rest assured, you have the attention of the President and the White House”
My first meeting as a public member of the IACC
By Geri Dawson, Chief Science Officer
Last Friday was my first meeting as a public member of the Interagency Autism Coordinating Committee (IACC). It was a particularly momentous meeting for the IACC because, for the first time, Kathleen Sebelius, Secretary of the Department of Health and Human Services (DHHS), attended the meeting along with two colleagues from DHHS, Howard Koh, Assistant Secretary for Health, and Henry Claypool, Director, Office on Disability. In addition, two representatives from the White House, Michael Strautmanis, Chief of Staff to the Assistant to the President for Intergovernmental Relations and Public Engagement, and Kareem Dale, Special Assistant to the President for Disability Policy, attended the meeting. Moreover, Francis Collins, Director of the National Institutes of Health, addressed the IACC. It was an auspicious beginning to my experience on this committee, to be sure.
The Secretary began by welcoming five new members to the IACC, which included Gerald Fischbach from the Simons Foundation, Marjorie Solomon from the MIND Institute at UC Davis, Ari Ne’Eman from the Autism Self-Advocacy Network, Denise Resnik from the Southwest Autism Research and Resource Center, and me, representing Autism Speaks. Secretary Sebelius began by telling the committee members that we “need to leverage all of our assets” and “work together across all agencies” to address the “alarming increase in autism rates” as well the need for “top notch research and services.” She promised that she will be taking very seriously the recommendations that come from the IACC. She told the committee, “Rest assured, you have the attention of the President and the White House.” Kareem Dale reiterated these themes, remarking that the White House’s goal and mission are to give autism issues the “highest level of attention.”
These encouraging remarks were followed by those of Dr. Collins, who also previously served as the Director of the NIH Genome Institute and the Human Genome Project. He began by stressing the need to understand the causes of autism and ways of preventing and treating this challenging condition. “I get the sense of urgency,” Collins remarked, a point he said was especially made clear to him during an earlier meeting he held this year with parents and members of autism advocacy groups. “Parents are never happier than their saddest child,” he remarked, “and if we can help with our resources, that’s what we want to do.” He noted that the IACC is distinguished among other government committees by its membership and activism, a fact that reflects the passion and urgency of the autism community. Dr. Collins shared his enthusiasm for the important role of genetics in the discovery of causes and treatments for autism, noting in particular, the exciting results of the Novartis clinical trial that was featured on the front page of last Friday’s New York Times. He stated that he didn’t think that the whole story is DNA, however, and that environmental factors and their interaction with genetic factors play key roles in understanding the causes of autism. In this regard, he described the National Children’s Study, a huge NIH effort to follow 100,000 children from conception through adulthood to discover how environmental exposures are influencing children’s health outcomes. He explained that autism is one of the stronger reasons for investing in this expensive effort. He also noted that research on behavioral interventions for ASD continue to be important. The necessity to avoid conservatism in the types of grants NIH funds, especially during hard economic times, was highlighted. Collins encouraged “out of the box” ideas that can open new perspectives and directions for autism research. He ended by again expressing his awareness of the great suffering that is experienced by many people with autism spectrum disorders and their families, ending with a quote from Winston Churchill – “If you are going through hell, keep going.” “Let’s all keep going,” he urged the IACC members, “because on the other side, there will be more understanding and more hope.”
I had the pleasure of giving the first talk after Dr. Collins. I reported on the activities and achievements of Autism Speaks’ Autism Treatment Network (ATN). I described the goals of the ATN, which include improving access and quality of medical care for children with ASD, developing evidence-based treatment guidelines, providing clinician training in the medical treatment of ASD, and conducting research on medical treatments. I described the network of 14 academic centers that comprise the ATN, which provides care for over 5,000 children (with over 2,000 now part of the ATN patient registry). Based on data collected through the registry, I described the common kinds of medical issues that many children with ASD face, including GI problems, sleep disturbances, neurological conditions, among others. I also described the vision for the ATN, which is to increase the number of centers nationwide, improve quality of care through training and guideline development, and provide empirical support for novel and effective treatments for ASD. After my presentation, several people remarked that they were not previously aware of the extent to which medical conditions affect the quality of life for individuals with ASD. To read more about the other presentations at last Friday’s IACC meeting, click here.
It is an honor to serve people with autism and their families on the IACC. I will do my best to represent all those who are suffering because of autism. My first charge will be to do everything I can to persuade our government to keep the promises made at Friday’s meeting of the IACC.
We applaud the Obama White House for its continuing support of individuals with disabilities. Through the stimulus act, the administration committed additional funds to autism research, on top of the existing National Institutes of Health funding and Combating Autism Act funding.
Kareem Dale, Special Assistant to the President for Disability Policy, blogged yesterday about another move the administration made to support those with disabilities. Read more here in his White House blog. We applaud all their efforts to move the disability agenda ahead and we look forward to seeing what’s around the next corner for autism.