The National Council on Severe Autism (NCSA) is an American non-profit organization that advocates for autistic children and adults who require constant, lifelong supervision and support. It was founded in April 2018.[1] It is generally wary of the neurodiversity movement, which they say marginalizes "those with more severe needs",[3] and has been criticized by autistic self-advocates.
This bumper sticker warns first responders that they may encounter a child with special needs.
The charitable focus of the NCSA is the large fraction of people 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%[4]), are nonverbal, engage in self-injury, or are aggressive. They may need lifelong total care, and in previous decades, their parents would have been encouraged to institutionalize them from an early age.[5] The NCSA focuses on people who are so disabled that they cannot self-advocate, though they also "fully support" self-advocacy and autonomy for those who are less disabled.[6] This has drawn criticism from people who view the label severe autism as harmful and consider the NCSA's blog posts about families' lived experiences to be "horror stories".[6]
The creation of the NCSA has been welcomed by some parents of autistic children with high support needs.[7] However, critics (including members of the autistic community) have claimed the NCSA opposes the right of autistic people (especially those with high support needs) to engage in self-determination.[8]
Views of autism awareness
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.[9][10]:230[11]
The NCSA has opposed efforts to discourage the use of medical terms such as disorder, deficit, risk, and symptoms, claiming that avoiding the use of such words harms families for whom autism is a life-limiting impairment.[12] They object to romanticizing autism, that is, to presenting autism in an unrealistic, idealized manner.[4] However, they also support people (who are able to communicate[3]) self-identifying however they want.[12]
Some autistic self-advocates have expressed concern that awareness actions undertaken by the NCSA and its members, such as social media posts showing an adult 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.[5]
Specific positions
The NCSA supports the use of physical restraints for autistic children in certain circumstances, such as this child harness.
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.[6]
They support sheltered workshops, which pay only a token amount of money to workers, as an option for some autistic people, saying that earning money is not the primary purpose of such workshops.[13]:69–71
The NCSA rejects all forms of facilitated communication, including the rapid prompting method, which are scientifically discredited attempts to communicate with nonverbal people by having a "facilitator" physically help them point to pictures or push buttons.[14]
People
Amy Lutz, a founding member, has written about her experiences as the mother of an autistic son with high support needs.[13]:99–100 She opposed Medicaid's restrictions on funding home- and community-based settings.[13]:98–100Autistic self-advocates and the American Civil Liberties Union have criticized many such settings for isolating residents from the wider community and failing to provide them with fully paid work.[13]:97–100 Lutz sees an institutional or institutional-like setting as not being inappropriate for autistic adults who "require more support than can be safely and consistently delivered in dispersed settings".[13]: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.[8]
Jill Escher, a founding member, was the president of the Autism Society San Francisco Bay Area before founding the NCSA.[13] She has expressed frustration with neurodiversity advocates who "cherrypick naive feel-good stories" and consequently minimize the reality of severe autism.[13]:119
1 2 Guldberg, Karen (2020-05-11). Developing Excellence in Autism Practice: Making a Difference in Education. Routledge. ISBN978-1-000-07135-1. Critics of the neurodiversity movement point out that many autistic people are too affected by their condition to speak up for themselves. In California, for example, the National Council on Severe Autism has been set up. They state that their aim is to pursue awareness of and solutions for the individuals and the families of those who have severe autism. They exclusively advocate for individuals with autism who need high levels of support. This group is very wary of the neurodiversity movement as it claims that the movement marginalises those with more severe needs.
1 2 Bayat, Mojdeh (2023-06-27). Teaching Exceptional Children: Foundations and Best Practices in Early Childhood Special Education. Taylor & Francis. ISBN978-1-000-89086-0. ...a misconception that all or most individuals with severe autism have hidden intellectual abilities. In fact, several advocacy organizations, such as the National Council on Severe Autism (NCSA) object to the language, images, and depiction of ADS, which romanticizes autism as a mere "condition" and not a debliitating disorder: Severe autism presents a major and rapidly growing public health and social services crisis, and its manifestations deserve to be seen and understood in all of their complexity, which often include pathology of early brain development, striking dysfunction, intellectual disability, minimal language, aggression, self-injury, pica (ingestion of inedible objects), vocalizations and/or property damage. No reasonable person can deny that severe forms of autism are among the most alarming and serious of all disorders in the entire field of psychiatry.
↑ Fein, Elizabeth (2020-07-07). Living on the Spectrum: Autism and Youth in Community. NYU Press. ISBN978-1-4798-4816-4. Now, a National Council on Severe Autism is being formed by parents increasingly concerned that it is the needs of people with what is sometimes called "classic autism," on "the severe end of the spectrum," that are currently being left out of conversations about autism.
↑ Porch, Leigh Merryday (2022-04-05). The Scenic Route: Embracing the Detours, Roadblocks, and Unexpected Joys of Raising an Autistic Child. Penguin. ISBN978-0-593-32872-9. And parents of severely autistic children—who feel their children's many needs are being swept under the rug by those who are able to advocate for themselves. Some of those families have even formed a new nonprofit, the National Council on Severe Autism. Among their goals are to support policy, programs, and resources for impacted families.
↑ Friedlander, Robin; Proulx, Francois (October 2023). "Autism: Current practices and controversies". BC Medical Journal. 65 (8): 283–290. In the US, families of individuals who are more impaired with autism have formed an advocacy group, the National Council on Severe Autism, to focus attention on those individuals with autism who, by virtue of any combination of cognitive and functional impairments, require continuous or near-continuous lifelong services.
1 2 O'Dell, Liam (2024-11-21). Selling Out the Spectrum: How Science Lost the Trust of Autistic People, and How It Can Win It Back. Jessica Kingsley Publishers. ISBN978-1-83997-627-8. In December 2022, four individuals representing the Autism Science Foundation in New York, the National Council on Severe Autism in California and the University of Pennsylvania shared a commentary arguing for a "full semantic toolbox" in the context of autism research, and that the "censorship" of certain words has a "chilling effect" on the practice. Words such as "disorder", "deficit", "risk" and "symptoms" are just some of the terms advised against in previous papers, yet defended here by the four individuals. They claim removing words like these impact families for whom autism is "a life- limiting disorder rather than a divergence or identity".
Lutz, Amy S. F. (2024). Chasing the Intact Mind: How the Severely Autistic and Intellectually Disabled were Excluded from the Debates that Affect Them Most. New York: Oxford University Press. ISBN978-0-19-768384-2. Book by NCSA founding board member.
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