Revamped Scientific Plan Forthcoming At Autism Speaks
As the nation’s largest autism advocacy group works to reshape its scientific agenda, members of the community are urging the nonprofit to prioritize work that affects quality of life for those on the spectrum.
Autism Speaks solicited input from members of the community — everyone from people with ASD to family members, researchers and other stakeholders — over the summer on the direction the group should take with a new three-year strategic plan for science.
The results, released this month, reflect a desire to know more about co-occurring conditions like sensory, sleep and gastrointestinal troubles as well as the overall health and well-being of those with the developmental disorder and an emphasis on transition and lifespan issues.
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More than 6,000 people participated in the survey, the majority of whom are family members of those with autism, the group said.
Compared to a similar survey in 2012, Autism Speaks found that respondents this year are more interested in the experiences of those entering adulthood and less concerned about immune dysfunction and environmental factors.
Many survey respondents specifically indicated that they oppose research on curing or preventing autism.
The findings will help shape how Autism Speaks determines what types of studies to fund and the impact could be significant. As of 2013, the nonprofit handed out $18.6 million in grants making it one of the largest funders of autism research, according to a federal report.
“Already, your input is guiding the formation of our strategic planning for the next three years, and it will continue to do so in the weeks ahead as we finalize the plan and share it with you,” Thomas Frazier, Autism Speaks’ chief science officer, said in releasing the findings.
An Autism Speaks spokeswoman told Disability Scoop in August that the organization does not currently have a “public-facing version” of its strategic plan for science.
Last year, the group moved to overhaul its mission statement opting to remove words like “struggle,” “hardship” and “crisis” as well as any reference to curing autism. A strategic plan for science that was intended to run through 2017 was designed to align with the old mission statement.