After nearly 20 years of advocacy on behalf of an appropriate public health response to the public health emergency of rising rates of severe autism, I'm honored to be joined by mothers of teenagers with autism and full time, tireless autism advocates, Katie Wright and Lisa Wiederlight in writing a response to Secretary Hillary Clinton's "Plan to Support Children, Youth, and Adults Living with Autism and Their Families".
Nine years after her remarks in 2007 that autism is "one of the most urgent--and least understood--challenges facing our children today," autism prevalence has climbed from 1 in 150 to 1 in 45 American children, with no cause and no new treatments identified.
Secretary Clinton is a long-time child and disability advocate, so we were not surprised to see her be the first out of the gate with some concrete recommendations that will positively affect the lives of many with autism. Her insightful remarks in New Hampshire this month included recognition of autism's increasing prevalence, and the need to prevent and treat it. Specifically:
"I think we have to take seriously what seems to be an increasing diagnosis of autism. And we need to do much more research about what is causing it. We've got to do what we can to prevent it. And then when it is diagnosed, intensive treatment."
Secretary Clinton's Plan provides many necessary changes for improving the safety, education, employment, and housing of people with autism spectrum disorder (ASD). The focus on reducing bullying, banning certain kinds of restraints in schools, having appropriate transition plans for young adults, reaching out to underserved populations, and the development of the Autism Works Initiative deserves full support.
However, many families living with autism believe that finding the causes of autism is just as important as providing supports for people who have this condition.
Our nation must not accept an ever-growing number of Americans with severe autism and related conditions as a "new normal" to be met only with services and accommodations.
Finding the modifiable causes of autism will serve as the foundation for preventing future cases and developing biological treatments which change the course of autism towards reduced disability or even recovery. Reducing demand for the extensive programs and services described in Secretary Clinton's Plan through prevention and effective treatment is critical. Addressing and treating co-occurring conditions common among people with ASD, such as gastrointestinal disease, epilepsy, immune disorders, and suicidality are cost-effective policy priorities that are noticeably absent her proposal.
By way of examples:
• A University of California Davis study published last year in the Journal of Autism and Developmental Disorders found that the total costs for caring for people with ASD in the US in 2015 were $268 billion, and this number is forecasted to rise to $461 billion in 2025. Incredibly, the current costs of ASD are more than double the combined costs of stroke and hypertension. These figures don't take into account Secretary Clinton's proposed programs and services--the costs of which have not yet been released publicly.
• A study published in the November 5, 2015 issue of the British Journal of Psychiatry found that people with autism are more than twice as likely as their peers in the general population to die prematurely. The study found that the risk of suicide in individuals with mild autism is about 10 times higher than in the general population. Secretary Clinton's proposal to address bullying and provide fulfilling employment and safe and affordable housing will hopefully address this tragic statistic. However, the most common cause of death among people with severe autism is epilepsy. Epilepsy affects approximately 40 percent of people with autism. Secretary Clinton's plan makes no mention of this critically-important issue.
Many people with autism are chronically ill, with immunological problems, metabolic disorders, and digestive system disease. Many still have significant disability even after receiving high-quality, intensive behavioral therapies. Increasing research efforts beyond behavioral interventions and genetics towards medical protocols will result in healthier children and more cost-effective and sustainable programs and services in the next four years and beyond.
Secretary Clinton can find these paradigm shifts already being addressed by her former colleagues in the U.S. Senate. In the Report accompanying the 2016 Appropriations bill, the Senate Appropriations subcommittee responsible for the National Institutes of Health inserted the following language relative to the National Institute of Environmental Health Services (NIEHS):
"The Committee urges NIEHS to enhance its support for research, including experimental and observational research, on potential environmental risk factors that may play a role in the initiation or promotion of ASD at any life stage. Further, with respect to regressive autism, NIEHS is encouraged to focus research on the susceptibility of subpopulations to environmental risk factors and consider approaches to the mitigation of environmental risks associated with ASD."
This language signifies a necessary and significant policy direction change on autism research, away from the genetic and psychiatric approaches that have consumed nearly all federal dollars on autism causation research so far.
It seems to us, however, that Secretary Clinton's previously-announced platform to address Alzheimer's would be equally appropriate for addressing autism, if not more so, given the chronic, virtually lifelong nature of autism, autism's higher annual cost ($268 billion vs $200 billion for Alzheimer's), and autism's increased mortality rate. The Clinton Alzheimer's Plan, found here: https://www.hillaryclinton.com/briefing/factsheets/2015/12/22/an-end-to-alzheimers-disease commits $2 billion dollars each year for research "preventing and effectively treating Alzheimer's by 2025" and "invests the needed resources, organizes a broad national effort, and inspires leaders in the public, nonprofit, and private sectors to develop effective interventions to prevent and effectively treat Alzheimer's and related dementias".
We are grateful that Secretary Clinton's Plan addresses many salient points that will assist the autism community. However, the Plan must also address the foundational issues that underlie the autism crisis. It is a beginning, but families facing autism are looking forward to working with Secretary Clinton to make it even better.