# National Council on Severe Autism

The National Council on Severe Autism is an American non-profit organization that advocates for children and adults who require constant, lifelong supervision and support because of severe autism. It was founded in January 2019. It is seen as a critic of the neurodiversity movement and has been criticized by autistic self-advocates.

## Charitable focus

The charitable focus of the NCSA is the large fraction of people with autism who, whether due solely to autism or due to autism in combination with other disabilities, require continuous supervision and significant support. They often have intellectual disability (30%), are nonverbal, engage in self-injury, or are aggressive. They may need need lifelong total care, and in previous decades, their parents would have been encouraged to institutionalize them from an early age. The NCSA focuses on people who are so disabled that they cannot self-advocate, though they "fully support" self-advocacy and autonomy for those who are less disabled. This has drawn criticism from parents who dislike describing some people as having 'severe' autism and who consider the NCSA's blog posts about families' lived experiences to be "horror stories".
The creation of the NCSA has been welcomed by some parents whose children have a level of autism that, in the words of one mother, "nobody writes the 'feel-good' stories about". The NCSA advocates for policies, programs, and resources for these families. Critics, on the other hand, say that the NCSA wants parents to be too powerful, especially with autistic self-advocates claiming that these parents are taking the right of self-determination away from severely disabled people.

## View of autism

Autism awareness in the media and popular culture primarily depicts, and even glamorizes,$^{:230}$ people with milder forms of autism, while the people with more severe or more impaired forms are get less attention. The NCSA was formed by families of people with more impairments and more significant needs as an advocacy group to attract attention to the significant needs of people who require lifelong, round-the-clock services.
The NCSA opposes efforts to re-brand severe autism as merely a difference of identity or to replace medical terms such as disorder, deficit, risk, and symptoms with language about differences, traits, or characteristics, as the people with severe autism, unlike most people with autism, have a life-limiting impairment. They object to romanticizing autism. However, they also support people (who are able to communicate) self-identifying however they want, as autism can be an identity for some, just like it can be a disabling impairment for others.
The gap between the parents of children with severe autism and the autistic self-advocates can be traced, in part, back to the decision of the DSM-5 to merge all autism-related conditions into a single spectrum.$^{:228}$ By removing the distinction between severe, "classic" autism and autism without any verbal or intellectual deficits, the families living with severe autism felt they were being overlooked, and autistic self-advocates (some of whom were also unhappy about the DSM's suppression of their identity as an Aspie) felt they could speak for the experiences of people with severe verbal and intellectual limitations, as they all had the same general label in the DSM-5.$^{:228–229}$ Because of this, the NCSA is seen as a critic of the neurodiversity movement.
Some autistic self-advocates are concerned about the social and political effects of advocacy by the NCSA and parents for people with severe autism. They are concerned that awareness actions, such as social media posts showing an adult child with severe autism having an autistic meltdown or parents engaging in online sharenting about an older child who is not toilet trained, could imperil their efforts to reduce discrimination in the workplace and in schools. Because people with severe autism are in the minority, they say that showing this minority gives people a misleading impression of autism.

## Specific positions

The NCSA supports the use of restraints, in some cases, such as a padded helmet to prevent brain and eye injuries in people who self-harm.
They support sheltered workshops, which pay only a token amount of money to the participants, as an option for some people with autism, saying that earning money is not the primary purpose of workshops.$^{:69–71}$ Additionally, for severely disabled people, the realistic choice is between a simple job in a sheltered workshop or no job at all.
Like other organizations supporting evidence-based practices, the NCSA rejects all forms of facilitated communication, including the rapid prompting method, which are discredited, debunked attempts to communicate with nonverbal people by having a "facilitator" physically help them point to pictures or push buttons.

## People

Amy Lutz, a founding member, has written about her experiences as the mother of a son with severe autism.$^{:99–100}$ She opposed Medicaid's restrictions on funding home- and community-based settings.$^{:98–100}$ Autistic self-advocates and the American Civil Liberties Union have criticized many HBCSs for isolating residents from the wider community and failing to provide them with fully paid work.$^{:97–100}$ Lutz sees an institutional or institutional-like setting as not being inappropriate for adults with severe autism who "require more support than can be safely and consistently delivered in dispersed settings".$^{:100}$ Her experience in New Jersey, when Tyler Loftus eloped from a group home, and spent three weeks in jail while the state struggled to find another residential placement for him, convinced her of the power of parents advocating for the needs and safety of their children.
Jill Escher, a founding member, was the president of the Autism Society San Francisco Bay Area before founding the NCSA. She has expressed frustration with neurodiversity advocates who "cherrypick naive feel-good stories" and consequently minimize the reality of severe autism.$^{:119}$
Alison Singer, founder of the Autism Science Foundation, is also a founding board member. Other founding board members include Judith Ursitti of Autism Speaks, Feda Almaliti, Lisa Parles, Frank Campagna, Gloria Satriale, and Matthew Siegel.