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Big Talk, Little Actual Change for Autism Speaks’ Research Agenda

Last week, Autism Speaks released their new “Strategic Plan for Science 2018-2020.” The new strategic plan follows a wording change to their mission statement and a 2017 stakeholder survey. The survey was primarily about Autism Speaks’ research funding. The kinds of research they fund impacts autistic people, since according to an IACC document, they are the third largest funder of autism research.

According to many experts, it doesn’t appear that Autism Speaks significantly changed their strategic science planning. The survey results, published in October 2017, have some important highlights. One question asked about research areas to avoid; of the responses, “most indicated opposition to research aimed at curing or preventing autism.” A specific response included “Researching a cure or genetic markers of autism. Preventing or curing autism is a form of eugenics, which is an abhorrent idea.” A further trend of the survey included: “Opposition to cure/prevention/ABA; more focus on acceptance/support.”

“It’s important to point out that the majority of respondents to this survey were family members and providers, not just self-advocates ourselves–which means that our message is carrying farther than ever before,” says Julia Bascom, Executive Director of the Autistic Self Advocacy Network. The results indicated a shift toward supporting quality of life research compared to their 2012 survey. Bascom believes that these changes prove the neurodiversity movement is changing how most people think about autism and reframing their priorities.

Yet Autism Speaks’ first two list items on their new science plan are “Support research that uncovers the biology of autism to advance the delivery of personalized therapies and supports” and “Support research that translates basic discoveries into potential personalized treatments ready for clinical testing.” The list items detail how they will use genetics and genomics in such a way that “uncovers the biology” of autism, including genetic “risk factors,” gene interactions with the environment, and factors influencing outcomes.

Angela Geiger, president and chief executive officer at Autism Speaks, told Disability Scoop on December 14: “This plan renews our commitment to be an engine that drives cutting-edge science and paves the way for personalized care.” Personalized, gene-based medicine is increasingly popular. But for Autism Speaks, it may imply support of eliminating the genetic factors that cause autism.

The new Autism Speaks strategic plan still heavily includes prevention and treatment research, despite the survey results and long-time autistic opposition to causation and prevention research. But , as Julia Bascom says: “No matter how strongly Autism Speaks has resisted listening to autistic voices, we are making ourselves heard.”

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