The National Council on Severe Autism is a non-profit organization that pursues recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders. The organization was founded in May 2018 by autism advocates, which include Jill Escher, Feda Almaliti, Amy Lutz, and Alison Singer, president of the Autism Science Foundation. The NCSA is the first group to advocate exclusively for the needs of autistic individuals needing high levels of support. The organization is already controversial concerning its views on low-functioning autism, with some supporting its goals of medical treatment and additional support, and others believing that the organization detracts from autistic people. The NCSA has claimed that in their first year, they "changed the conversation about autism: severe autism is no longer in the closet and our growing national crisis is gaining the attention it clearly deserves."
Formation
The purpose of this organization is to promote the needs of those affected by autism, who, by virtue of any combination of cognitive and functional impairments, require continuous or near-continuous, lifelong services, supports, and supervision. Topics to be addressed include housing arrangements, adequate developmental services, and scientific research. The National Council on Severe Autism has issued position statements on hot-button issues such as guardianship, crisis care, employment and what qualifies as a community-based setting. The NCSA supports the option of appointing a guardian to make decisions for severely autistic individuals when necessary. Additionally, they note that the number of studies that focus on severe autism have declined dramatically. Kimberlee McCafferty, an autism parent and writer, wrote that as a parent of a severely autistic child, she supports the organization because it gives her the opportunity to discuss the challenges of severe autism. She claimed that those challenges are not adequately portrayed in the media, as the media tends to mainly focus on successful autistic individuals. Many parents have expressed support for the organization's existence, noting that severe autism can often be dangerous. Matthew Siegel, a professor of psychiatry who is on the board of directors, commended the group for providing appropriate support for severely autistic individuals.
Advocacy
The NCSA attended a housing workshop sponsored by the IACC where they discussed the need for more housing support for severely autistic individuals. They state that many of those individuals will live with their parents for the rest of their life. Alison Singer has also attended the 2019 INSAR conference to talk about the NCSA's goals. The website also publishes articles from professionals and parents of autistic children that discusses the issues associated with severe autism. As of January 2019, some 1,500 people had signed up for its newsletter, and more than 2,000 people follow the group's Facebook page. As of April 18, 2019, the group had more than 4,500 Facebook followers. In January 2020, NCSA has almost 7,000 Facebook followers. The NCSA has created a series of webinars in response to the COVID-19 pandemic to provide advice and answer questions about the effects of the pandemic on autistic children.
Criticism
Shannon Des Roches Rosa, the senior editor for the news site Thinking Person's Guide to Autism, claims that the organization will take away autonomy from autistic people. She claims that the organization wants parents or guardians to make decisions for autistic individuals, and that there are no autistic people on the board of directors. Amy Lutz, the organization's secretary, stated in response that most autistic individuals served by the organization cannot advocate for themselves, saying “We fully support self-advocates pursuing the support that they need, but this is completely separate.” The Maine Autism Collective wrote an open letter to the NCSA saying that they disagree with their view that autism is a medical condition.
