New Group To Focus On Severe Autism
Amid a bevy of existing autism organizations, a new national nonprofit is hoping to stand out by giving voice to the particular needs of people on the severe end of the spectrum.
The National Council on Severe Autism launched this month with an eye toward addressing the services, housing and policy concerns of people most significantly affected by the developmental disorder and their families.
Increasingly, those behind the new group say that autism is seen in popular culture through the lens of individuals who are high functioning like the surgeon portrayed on television’s “The Good Doctor.” At the same time, they note that changes to psychiatry’s Diagnostic and Statistical Manual of Mental Disorders in recent years lumped people from all ends of the autism spectrum into one broad diagnostic category.
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“Autism is often romanticized and sugar-coated in the media and social media,” said Jill Escher, the president of the National Council on Severe Autism who also heads the Autism Society San Francisco Bay Area. “For countless families devoted to the well-being of their disabled loved ones, the daily challenges can be overwhelming, and the prospects for the future extremely bleak. We will work to increase capacity and a range of new options for this population.”
The new group said it will focus on elevating the concerns of families of those needing continuous supervision. In many cases these individuals are nonverbal or minimally verbal, have co-occurring intellectual disability and have challenging behaviors.
“This particular segment of the autistic population is left behind because of the nature of their disability and the purpose of this organization is to bring a voice to that group that has been left behind because in many cases they have the most severe medical needs, they have very intensive service needs and we have to make sure that we remember them when we are talking about research, services and policies,” Alison Singer told the federal Interagency Autism Coordinating Committee during a meeting this week. Singer, a member of the federal panel, is the new council’s treasurer and also is the founder and executive director of the Autism Science Foundation.
Already, the National Council on Severe Autism has issued position statements on hot-button issues like guardianship, crisis care, employment and what qualifies as a community-based setting. And, they said a think tank on adult autism policy is in the works.
“We have no intention to duplicate the vitally important work of other autism advocacy organizations,” Escher said. “We aim only to add a strong voice for those who cannot speak for themselves.”