Provided by Lisa Wiederlight, Executive Director, SafeMinds
April 19, 2018
It is my pleasure to speak to you and the members of the IACC on behalf of SafeMinds, a national nonprofit organization focused on ending the autism epidemic by promoting environmental research and effective treatments. A group of parents dedicated to identifying the environmental causes of the autism epidemic started our organization 18 years ago, and we remain dedicated to increasing the safety, health, and independence of people with autism and their families.
The problems facing the autism community are very serious and require urgent responses. Since the IACC was created, it seems the problems facing people with autism and their families have worsened. Autism prevalence has increased with no identified cause. We also don’t have any widely-recognized causes of autism, either.
It is imperative that the IACC focuses on urgency and accountability. Given the size and scope of the autism crisis in the United States, I was dismayed to find that the only strategic research plan available from the IACC is from 2016-2017. Do we not have a plan for this year? We’re in the second quarter of the year already. Don’t the taxpayers and other stakeholders deserve to know how we are going to affect this situation this year moving forward?
There are 23 new objectives in the 2016-2017 Strategic Research Plan, which recommends doubling the research budget from $343 million in 2015 to $685 million in 2020. Unquestionably, more must be spent on research, services, supports, and the like, but what justification is given? Why does the strategy fail to identify and quantify outcomes that can be measured and compared over time? We need a research plan that will support policies and programs that will ultimately make a significant difference in the everyday lives of people with autism and their families.
By way of example, one of the 2016-2017 Strategic Research Plan’s objectives is to “reduce disparities in early detection and access to services.” Reduce by how much? From what level to what level, over how much time? In which populations? Other terms used in the strategic research plan include, “understand” and “explore.”
Another example is, “What is the biology underlying ASD” and then the objective is to “support research to understand the underlying biology of co-occurring conditions in those with autism.” How is “Supporting research” measurable? Perhaps “Identify ‘x’ many biological factors that would contribute to the development of seizure disorders”, or gastrointestinal disease, or suicidality, or wandering, or sleep disorders?
If the IACC instead coordinated research that supported the policy goals of an Autism Strategic Plan, or the goals of participating agencies, our community would see significant changes. For example, one goal could be to reduce mortality rates by X percent in the next five years. The research supporting that measurable goal would identify the causes of and treatments for suicidality and seizures, which are the main reasons for higher autism mortality rates. Then, the agencies responsible for addressing them could measure the effects of policies and programs designed to reduce autism mortality over time. The IACC could also coordinate research into the gaps in knowledge and roadblocks to achieving that goal.
The same can be said for autism prevalence data. How can this data be used, if at all, toward informing policy objectives toward a measurable goal? For example, how many people with autism are over the age of 18 who can be employed? How many are employed, and what services are needed to decrease unemployment rates among people with autism by five percent in the next three years? What should and could that percentage be? How do the agencies represented in the IACC collaborate with the members of the IACC to formulate policies, programs, and metrics toward a stated goal that will positively affect our community’s safety, health, and independence?
This is the necessity of our times, in which
- The majority of people with autism experience gastrointestinal disease.
- A higher percentage of people with autism have seizure disorders than in the general public.
- People with autism are nine times more likely than their peers to ideate suicide.
- The unemployment rate among people with autism is at 80 percent.
- Autism is costing our country $500 billion.
Those are only a few examples of the unintended policy consequences of ignoring the urgency of the autism crisis facing our country, while not taking a measured response with accountability. SafeMinds hopes that the IACC presents a more accountable, effective, and outcome-based response for now and the future of our great nation.
Thank you.
