
National Council on Severe Autism

The National Council on Severe Autism (NCSA) is a non-profit organization that pursues recognition, policy and solutions for individuals, families and caregivers affected by severe forms of autism and related disorders. The organization was founded in May 2018 by 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.
Formation.
In an article on Psychology Today, Lutz wrote that the Council was set up to advocate for suitable housing arrangements, adequate developmental services, and scientific research. The National Council on Severe Autism has issued position statements on 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. 
Advocacy.
, 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.
Responses.
Support.
Many parents have expressed support for the organization's existence, noting that severe autism can often be dangerous.
Opposition.
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.