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Calls to Action

John Elder Robison Urges Autism Self Advocates to Embrace Brain Research

In remarks at IMFAR Stakeholder Luncheon, renowned autism self-advocate urges autism community to support brain-tissue research
May 16, 2014

John Elder Robison, renowned autism self-advocate and a neuro-diversity scholar at the College of William and Mary, called on the autism community to embrace brain research and the development of treatments that ease suffering. His remarks immediately followed the announcement of a new brain-donor registration site for Autism BrainNet.

The announcement took place at the annual Stakeholders Luncheon at the International Meeting for Autism Research (IMFAR), in Atlanta. The luncheon was co-sponsored by Autism Speaks and Autism BrainNet.

A year ago, the Simons Foundation and Autism Speaks established Autism BrainNet to collect, store and distribute the precious brain tissue needed to advance scientific understanding and treatment of autism. The new foundation grew out of the Autism Speaks Autism Tissue Program.

The day's luncheon opened with the announced launch of its new “It Takes Brains,” donor registration website.This included an emotional video vignette, “Meet the Matthews,” featuring a family who registered as future postmortem brain donors.

“That this mother  asking for a cure for her son’s autism is something that some will find to be offensive and attack on people like me,” Robison said in delivering his remarks after the video. “I want to assure you as a person deeply involved in supporting science that when a mother expresses to me a desire to cure the suffering she sees in her son ... that to me is relief of suffering, that to me is remediation of disability… It doesn’t mean that we’re up here wanting to wipe people like me or her son off the face of the earth.”

Robison went on to urge the attendees – including many individuals on the spectrum – to become ambassadors for autism science and the development of evidence-based treatments.

“When people say to you ‘we need acceptance of autistic people. We need supports for autistic people,’ you need to explain to them ‘that starts with brain tissue. That starts with science.’”

View Robison’s remarks in the video clip above. You can also read his blog posts from IMFAR on his website:

See more Autism Speaks coverage of IMFAR here.