Controversy within advocacy communities

May 9, 2021

The term neurodiversity was officially coined in 1998 by Australian sociologist Judy Singer, according to Steven K. Kapp’s book Autistic Community and the Neurodiversity Movement. ASAN has worked to weave this ideology into every part of their work, from policymaking to their motto, “Nothing about us without us.”

“A brain not functioning in the way that everyone else’s does is not an excuse for eugenics, a lack of human rights, or pushing people into institutions,” Pervez said. 

As Pervez referenced, organizations have faced criticism in the past 20 years for vilifying autism spectrum disorder (ASD) instead of working towards acceptance. 

Founded in 2005 by Bob and Suzanne Wright, advocacy group Autism Speaks’ revised mission aims to support people with autism and their families through increasing understanding and enabling access to screening. 

Initially, the organization aimed to research genetic variants to find a cure or treatments for autism. They released a commercial entitled “I am Autism” in 2009. In voiceover, the commercial said, “I am Autism […] I work faster than pediatric AIDS, cancer, and diabetes combined […] if you are happily married, I will make sure that your marriage fails.” 

A notable initial investor was Bernard Marcus, the co-founder of Home Depot. Marcus won the William E. Simon Prize for Philanthropic Leadership for his involvement with Autism Speaks in 2012. On an administrative level, Marcus, doctors, and family members of people with autism fill most of the leadership roles in Autism Speaks. As of 2020,  three neurodiverse people had served in any of the organization’s executive positions

“We’ve seen autism portrayed by different groups as scary and bad, but those narratives were coming from people outside the community. The global perception of autism needs to include autistic people because you can’t have autism without us”, Pervez said. “This starts by putting autistic people of all backgrounds into positions of power.”

In response to its controversial history, Autism Speaks is working to adapt its organization to best serve the autistic community.

 “For the Record,” a page on their website, provides information on their opposition to eugenics and specifics on budget allocation and funding.

“Since Autism Speaks was founded, research has shown that there is no single autism. Science also tells us there will be no single cure. Today, Autism Speaks is not looking for a cure. In fact, in 2016, the word ‘cure’ was removed from our mission statement,” said Kelly Bertenthal, Autism Speaks’ senior area director in Northern California. 

Additionally, Autism Speaks launched their kindness campaign designed for the classroom, home, and work environments. Its goal is to create a more empathetic and understanding society.

This starts with respect. 

 

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Controversy within advocacy communities