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Thursday, September 19, 2019

The Fight Over Julia

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

At WP, Lindsay Bever writes of the controversy over Julia, the autistic Muppet on Sesame Street.
The Autistic Self Advocacy Network (ASAN), an organization run by and for autistic people, announced it had cut ties with “Sesame Street” after the children’s program partnered with Autism Speaks to make the Muppet the face of a public service campaign encouraging early screening and diagnosis of autism. ASAN has accused Autism Speaks of using “language of acceptance and understanding to push resources that further stigma and treat autistic people as burdens on our families.” It contends that resource materials from Autism Speaks encourage parents “to view autism as a terrible disease from which their child can ‘get better.’ ”
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Autism Speaks denied ASAN’s characterization of its approach, or resource materials. Lisa Goring, Autism Speaks’s chief strategic initiatives and innovation officer, said the group’s job “is to empower families with the information they need so their child can be successful.”
Jeanette Betancourt, senior vice president of U.S. social impact at Sesame Workshop, said Sesame is “saddened” ASAN has ended its relationship with the children’s program as it has been “incredibly supportive of our efforts along the way and of contributing to Julia.”