Written Comment to the Interagency Autism Coordinating Committee

SafeMinds is pleased to provide this written testimony to the Interagency Autism Coordinating Committee for its October 2018 meeting. We remain concerned about the Federal government’s lack of urgency related to autism disability. Urgency and a commitment to rapidly improving outcomes are desperately needed due to the increased prevalence of autism over the past 18 years, from 1 in 150 in 2000, to 1 in 59 children today, and due to the significant mortality, morbidity, and lower quality of life associated with autism.

As these and other metrics worsen for our community, the Federal response seems to remain the same. There is little to no environmental causation research supported by the Committee, and little to no inquiry into effective treatments for people with autism today. Addressing autism requires research-based policies and programs to improve the safety, health, and independence of people with autism and their caregivers.

SafeMinds is also dismayed that the Federal response lacks full inclusion of all segments of the autism community and spectrum, and has little to no accountability to the American taxpayers who fund millions in research and services each year. This summer, SafeMinds, with The Thinking Mom’s Revolution and Talk About Curing Autism (TACA) designed and implemented
a 15 question “IACC 2018 Stakeholder Satisfaction Survey” to identify autism community stakeholders’ views on the efficacy, responsiveness, and accountability of the Committee.

During the two-week survey period, we received 1,405 unique responses. The autism community stakeholders we surveyed included people with autism, caregivers of people with autism, autism service providers, physicians, and others. The survey results were striking. Almost half of the respondents had not even heard of the IACC before they completed the survey. Of those who had
heard of the IACC, 46 percent stated that the work of the IACC had affected their lives either negatively or “not at all.” Less than five percent of respondents answered that the work of the IACC had a positive impact on their lives.

Respondents reported similar negative impressions when asked whether the IACC represented their interests when it came to addressing autism in the United States. Over half of the respondents (59.6 percent) said that the IACC did not represent their interests. An additional 33 percent said they “did not know” whether the IACC represented their interests. SafeMinds urges the Federal government to engage a more diverse group of stakeholders to find out why the IACC is not meeting community needs.

The survey results show that many autism community stakeholders feel disenfranchised by the IACC. Almost 94 percent of respondents said they had not provided comments at an IACC meeting. Of the respondents who did provide public comment, over 95 percent thought that the IACC had not appropriately addressed their concerns or issues. These respondents further stated that they were not given an opportunity to discuss their concerns with the committee, and were not provided enough time to properly explain the context and relevance of their issues.

Those who did not provide public comment cited two primary reasons. About 64 percent reported that they were unable to travel to the meetings in Washington DC, while nearly 33 percent of stakeholders said that they could not get childcare so they could attend the meeting. SafeMinds urges the IACC to hold meetings throughout the country, and to consider the use of technology that facilitates stakeholder-Committee interactions during the meeting regardless of the stakeholders’ locations.

These are only a few of the concerns which surfaced from the survey. A full report will be issued later this year. We would welcome the opportunity to discuss the survey with the Committee. The Federal response to autism must be improved, and robust engagement with diverse stakeholders is a necessary activity for improvement,

Respectfully submitted,
Lisa Wiederlight
Executive Director