I have had a wonderful time discussing The Politics of Autism at the Autism Law Summit. Thanks to Lorri Unumb and Mike Wasmer.
At The Atlantic, Joceyln Wiener reports on The MIND Institute:
Nearly two decades after the men first imagined it, the MIND Institute counts among its ranks 55 of the world’s premier scientists working on autism and other neurological conditions. Most researchers are based in two neighboring buildings on campus; the rest are scattered in departments across the university. MIND has research grants and contracts that total about $25 million annually, the majority of them from the National Institutes of Health (NIH). The state of California kicks in about $2.7 million a year.
Over the years, the institute’s researchers have made major discoveries in the fields of neuroscience, immunology, behavioral and language interventions, environmental toxicology and targeted treatments. “MIND and the investigators that are present there have been central to most of the significant developments within autism research within the last decade or so,” says Mathew Pletcher, interim chief science officer for the advocacy organization Autism Speaks.Their early goal for the institute—finding a ‘cure’ for their children’s autism—has become increasingly controversial.
What sets MIND apart, he and others say, has been its focus on collaboration: between experts from different disciplines, with other universities, and between researchers, clinicians and families. This type of integration was part of the institute’s founding vision.
Families have driven research fundraising for a host of childhood conditions. This is hardly surprising; nothing motivates parents like seeing their children suffer. In the 1990s, as autism diagnoses were accelerating but research funding remained sparse, parent-led research efforts emerged en force.
The small cadre of parents who formed MIND were especially well positioned. By the time their young sons were diagnosed with severe autism, many were community leaders in Sacramento, California’s state capital. They used their connections, influence, skill, and passion to amass funding and political support for the new institute. Their vision influenced everything from the organization’s research agenda to the color of its walls.
In the early years, these parents sat on grant evaluation panels, helping to decide which pilot research proposals would be funded. They pushed for the creation of the International Meeting for Autism Research, which today brings together more than 2,000 researchers, advocates and family members from around the world. But their early goal for the institute—finding a ‘cure’ for their children’s autism—has become increasingly controversial.