National Council on Severe Autism: Difference between revisions
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The '''National Council on Severe Autism''' (NCSA) is an American [[non-profit organization]] whose stated goal is to advocate for autistic children and adults who require constant, lifelong supervision and support. It was founded in January 2019.<ref name=" |
The '''National Council on Severe Autism''' (NCSA) is an American [[non-profit organization]] whose stated goal is to advocate for autistic children and adults who require constant, lifelong supervision and support. It was founded in January 2019.<ref name="McGovern">{{Cite book |last=McGovern |first=Cammie |url=https://books.google.com/books?id=9eAMEAAAQBAJ&pg=PA208 |title=Hard Landings: Looking Into the Future for a Child With Autism |date=2021-08-24 |publisher=Penguin |isbn=978-0-525-53906-3 |pages=208–211 |language=en}}</ref> It is generally critical of the [[neurodiversity movement]], including of opposition to genetic research (it considers the prevention of autistic births a "moral duty")<ref name="Guldberg" /><ref name="NCSA moral duty" />, and has been criticized by Autistic [[self-advocates]]. |
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== Charitable focus == |
== Charitable focus == |
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[[File:Special_Needs_(40637852834).jpg|thumb|This bumper sticker warns first responders that they may encounter a child with special needs.]] |
[[File:Special_Needs_(40637852834).jpg|thumb|This bumper sticker warns first responders that they may encounter a child with special needs.]] |
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The charitable focus of the NCSA is the large fraction of autistic 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%<ref name=" |
The charitable focus of the NCSA is the large fraction of autistic 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%<ref name="Bayat">{{Cite book |last=Bayat |first=Mojdeh |url=https://books.google.com/books?id=F6S_EAAAQBAJ&pg=PT224 |title=Teaching Exceptional Children: Foundations and Best Practices in Early Childhood Special Education |date=2023-06-27 |publisher=Taylor & Francis |isbn=978-1-000-89086-0 |language=en |quote=...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.}}</ref>), are [[Nonverbal autism|nonverbal]], engage in [[Self-injury in autism|self-injury]], or are aggressive. They may need need lifelong [[total care]], and in previous decades, their parents would have been encouraged to [[Commitment (mental health)|institutionalize]] them from an early age.<ref name="Coffey">{{Cite news |last=Coffey |first=Laura T. |date=13 August 2021 |title=Why there's a war between parents of children with autism and autistic adults |url=https://www.today.com/today/amp/tdna227565 |work=[[Today (American TV program)|Today]]}}</ref> The NCSA focuses on people whom they claim are so disabled that they cannot [[Self-advocacy|self-advocate]], though they have also claimed to "fully support" self-advocacy and [[autonomy]] for those who are less disabled.<ref name="Opar">{{Cite web |last=Opar |first=Alisa |date=2019-02-04 |title=New group faces backlash over its goals for severe autism |url=https://www.thetransmitter.org/spectrum/new-group-faces-backlash-goals-severe-autism/ |access-date=2024-10-24 |website=The Transmitter: Neuroscience News and Perspectives |language=en-US}}</ref> This has drawn criticism from parents who view the unofficial label "severe autism" as harmful and consider the NCSA's blog posts about families' [[lived experiences]] to be "horror stories".<ref name="Opar" /> |
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The creation of the NCSA has been welcomed by some parents of autistic children with high support needs.<ref>Rutan McCafferty, Kimberlee. 2019. “For Our Children with Severe Autism, Speak Loud, Speak Proud.” ''Exceptional Parent'' 49 (6): 40–41.<!-- via [[WP:TWL]] --></ref> 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]].<ref name=" |
The creation of the NCSA has been welcomed by some parents of autistic children with high support needs.<ref>Rutan McCafferty, Kimberlee. 2019. “For Our Children with Severe Autism, Speak Loud, Speak Proud.” ''Exceptional Parent'' 49 (6): 40–41.<!-- via [[WP:TWL]] --></ref> 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]].<ref name="McGovern" /> |
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== View of autism == |
== View of autism == |
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The NCSA believes it is the moral duty of the human race to prevent anyone from being born autistic or with any other neurological disability and supports genetic research to that end. Although it acknowledges that some critics ("neurodiversity proponents") label such research efforts [[eugenic]], it dismisses such criticism as "anti-preventionist."<ref name=" |
The NCSA believes it is the moral duty of the human race to prevent anyone from being born autistic or with any other neurological disability and supports genetic research to that end. Although it acknowledges that some critics ("neurodiversity proponents") label such research efforts [[eugenic]], it dismisses such criticism as "anti-preventionist."<ref name="NCSA moral duty">{{Cite web |last=National Council on Severe Autism |date=2021-09-09 |title=Our Moral Duty to Prevent Autism |url=https://ncsa-admin.medium.com/our-moral-duty-to-prevent-autism-f19933bce62d |access-date=2025-03-31 |website=Medium |language=en}}</ref> |
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The NCSA opposes efforts to replace medical terms such as ''[[Medical disorder|disorder]]'', ''[[Cognitive deficit|deficit]]'', [[Risk factor|''risk'']], and ''[[symptoms]]'' with language about ''differences'', ''traits'', or ''characteristics''.<ref name=" |
The NCSA opposes efforts to replace medical terms such as ''[[Medical disorder|disorder]]'', ''[[Cognitive deficit|deficit]]'', [[Risk factor|''risk'']], and ''[[symptoms]]'' with language about ''differences'', ''traits'', or ''characteristics''.<ref name="O'Dell">{{Cite book |last=O'Dell |first=Liam |url=https://books.google.com/books?id=QSXZEAAAQBAJ&dq=%22national+council+on+severe+autism%22&pg=PA51 |title=Selling Out the Spectrum: How Science Lost the Trust of Autistic People, and How It Can Win It Back |date=2024-11-21 |publisher=Jessica Kingsley Publishers |isbn=978-1-83997-627-8 |language=en}}</ref> However, they also claim to support people (who are able to communicate<ref name="Guldberg">{{Cite book |last=Guldberg |first=Karen |url=https://books.google.com/books?id=ueXkDwAAQBAJ&pg=PT266 |title=Developing Excellence in Autism Practice: Making a Difference in Education |date=2020-05-11 |publisher=Routledge |isbn=978-1-000-07135-1 |language=en |quote=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.}}</ref>) [[Autistic (identity)|self-identifying]] however they want.<ref name="O'Dell" /> |
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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 [[Workplace discrimination|discrimination in the workplace]] and in schools.<ref name=" |
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 [[Workplace discrimination|discrimination in the workplace]] and in schools.<ref name="Coffey" /> |
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== Specific positions == |
== Specific positions == |
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[[File:Special_Child_Harness_and_Reins_Designed_for_Older_(Early_Adolescent)_Children_with_Special_Behavioral_Needs_(2).jpg|thumb|The NCSA supports the use of some restraints.<ref name=" |
[[File:Special_Child_Harness_and_Reins_Designed_for_Older_(Early_Adolescent)_Children_with_Special_Behavioral_Needs_(2).jpg|thumb|The NCSA supports the use of some restraints.<ref name="Opar" /> A restraint such as this [[child harness]] may be necessary to prevent a child from being injured or killed{{Citation needed|date=October 2024}}, because some people with severe autism are unable to recognize dangerous situations, such as running into a busy street.{{Citation needed|date=October 2024}}]] |
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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.<ref name=" |
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.<ref name="Opar" /> |
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They support [[sheltered workshops]] (which pay only a token amount of money to workers) as an option for some autistic people, claiming that earning money is not the primary purpose of such workshops.<ref name=" |
They support [[sheltered workshops]] (which pay only a token amount of money to workers) as an option for some autistic people, claiming that earning money is not the primary purpose of such workshops.<ref name="Garcia">{{Cite book |last=Garcia |first=Eric |url=https://books.google.com/books?id=lnb3DwAAQBAJ |title=We're Not Broken: Changing the Autism Conversation |date=2021 |publisher=Houghton Mifflin Harcourt |isbn=978-1-328-58784-8 |language=en}}</ref>{{Rp|page=|pages=69–71}} |
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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.<ref>{{Cite book |last=Beals |first=Katharine P. |url=https://books.google.com/books?id=jTSAEAAAQBAJ&pg=PA234 |title=Cutting-Edge Language and Literacy Tools for Students on the Autism Spectrum |date=2022-06-24 |publisher=IGI Global |isbn=978-1-7998-9444-5 |pages=234 |language=en}}</ref>{{Citation needed|date=October 2024 |reason=source needed to support the claim that NCSA supports evidence based medicine generally. The source provided shows they don't support facilitated communication.}} |
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.<ref>{{Cite book |last=Beals |first=Katharine P. |url=https://books.google.com/books?id=jTSAEAAAQBAJ&pg=PA234 |title=Cutting-Edge Language and Literacy Tools for Students on the Autism Spectrum |date=2022-06-24 |publisher=IGI Global |isbn=978-1-7998-9444-5 |pages=234 |language=en}}</ref>{{Citation needed|date=October 2024 |reason=source needed to support the claim that NCSA supports evidence based medicine generally. The source provided shows they don't support facilitated communication.}} |
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== People == |
== People == |
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Amy Lutz, a founding member, has written about her experiences as the mother of an autistic son with high support needs.<ref name=" |
Amy Lutz, a founding member, has written about her experiences as the mother of an autistic son with high support needs.<ref name="Garcia" />{{Rp|pages=99–100}} She opposed Medicaid's restrictions on funding home- and community-based settings.<ref name="Garcia" />{{Rp|pages=98–100}} [[Self-advocates|Autistic 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.<ref name="Garcia" />{{Rp|pages=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".<ref name="Garcia" />{{Rp|pages=|page=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.<ref name="McGovern" /> |
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[[Jill Escher]], a founding member, was the president of the [[Autism Society of America|Autism Society]] San Francisco Bay Area before founding the NCSA.<ref name=" |
[[Jill Escher]], a founding member, was the president of the [[Autism Society of America|Autism Society]] San Francisco Bay Area before founding the NCSA.<ref name="Garcia" /> She has expressed frustration with [[neurodiversity]] advocates who "cherrypick naive feel-good stories" and consequently minimize the reality of what she and the NCSA term "severe" autism.<ref name="Garcia" />{{Rp|page=119}} |
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[[Alison Singer]], founder of the [[Autism Science Foundation]], is also a founding board member.<ref>{{Cite web |title=Who We Are - National Council on Severe Autism - Team — NCSA |url=https://www.ncsautism.org/team |access-date=2024-10-14 |website=National Council on Severe Autism |language=en-US}}</ref><ref name=" |
[[Alison Singer]], founder of the [[Autism Science Foundation]], is also a founding board member.<ref>{{Cite web |title=Who We Are - National Council on Severe Autism - Team — NCSA |url=https://www.ncsautism.org/team |access-date=2024-10-14 |website=National Council on Severe Autism |language=en-US}}</ref><ref name="Lutz">{{Cite web |last=Lutz |first=Amy S. F. |date=14 January 2019 |title=National Council on Severe Autism (NCSA) Launches |url=https://www.psychologytoday.com/us/blog/inspectrum/201901/national-council-severe-autism-ncsa-launches |access-date=2024-10-24 |website=[[Psychology Today]] |language=en-US}}</ref> Other founding board members include Judith Ursitti of [[Autism Speaks]], [[Feda Almaliti]], Lisa Parles, Frank Campagna, Gloria Satriale, and Matthew Siegel.<ref name="Lutz" /> |
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== References == |
== References == |
Revision as of 02:40, 2 April 2025
Formation | January 2019 |
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Headquarters | California |
Board President | Jill Escher |
Website | www |
The National Council on Severe Autism (NCSA) is an American non-profit organization whose stated goal is to advocate for autistic children and adults who require constant, lifelong supervision and support. It was founded in January 2019.[1] It is generally critical of the neurodiversity movement, including of opposition to genetic research (it considers the prevention of autistic births a "moral duty")[2][3], and has been criticized by Autistic self-advocates.
Charitable focus

The charitable focus of the NCSA is the large fraction of autistic 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 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 whom they claim are so disabled that they cannot self-advocate, though they have also claimed to "fully support" self-advocacy and autonomy for those who are less disabled.[6] This has drawn criticism from parents who view the unofficial 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.[1]
View of autism
The NCSA believes it is the moral duty of the human race to prevent anyone from being born autistic or with any other neurological disability and supports genetic research to that end. Although it acknowledges that some critics ("neurodiversity proponents") label such research efforts eugenic, it dismisses such criticism as "anti-preventionist."[3]
The NCSA opposes efforts to replace medical terms such as disorder, deficit, risk, and symptoms with language about differences, traits, or characteristics.[8] However, they also claim to support people (who are able to communicate[2]) self-identifying however they want.[8]
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 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, claiming that earning money is not the primary purpose of such workshops.[9]: 69–71
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.[10][citation needed]
People
Amy Lutz, a founding member, has written about her experiences as the mother of an autistic son with high support needs.[9]: 99–100 She opposed Medicaid's restrictions on funding home- and community-based settings.[9]: 98–100 Autistic 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.[9]: 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".[9]: 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.[1]
Jill Escher, a founding member, was the president of the Autism Society San Francisco Bay Area before founding the NCSA.[9] She has expressed frustration with neurodiversity advocates who "cherrypick naive feel-good stories" and consequently minimize the reality of what she and the NCSA term "severe" autism.[9]: 119
Alison Singer, founder of the Autism Science Foundation, is also a founding board member.[11][12] Other founding board members include Judith Ursitti of Autism Speaks, Feda Almaliti, Lisa Parles, Frank Campagna, Gloria Satriale, and Matthew Siegel.[12]
References
- ^ a b c McGovern, Cammie (2021-08-24). Hard Landings: Looking Into the Future for a Child With Autism. Penguin. pp. 208–211. ISBN 978-0-525-53906-3.
- ^ a b Guldberg, Karen (2020-05-11). Developing Excellence in Autism Practice: Making a Difference in Education. Routledge. ISBN 978-1-000-07135-1.
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.
- ^ a b National Council on Severe Autism (2021-09-09). "Our Moral Duty to Prevent Autism". Medium. Retrieved 2025-03-31.
- ^ Bayat, Mojdeh (2023-06-27). Teaching Exceptional Children: Foundations and Best Practices in Early Childhood Special Education. Taylor & Francis. ISBN 978-1-000-89086-0.
...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.
- ^ a b Coffey, Laura T. (13 August 2021). "Why there's a war between parents of children with autism and autistic adults". Today.
- ^ a b c d Opar, Alisa (2019-02-04). "New group faces backlash over its goals for severe autism". The Transmitter: Neuroscience News and Perspectives. Retrieved 2024-10-24.
- ^ Rutan McCafferty, Kimberlee. 2019. “For Our Children with Severe Autism, Speak Loud, Speak Proud.” Exceptional Parent 49 (6): 40–41.
- ^ a b 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. ISBN 978-1-83997-627-8.
- ^ a b c d e f g Garcia, Eric (2021). We're Not Broken: Changing the Autism Conversation. Houghton Mifflin Harcourt. ISBN 978-1-328-58784-8.
- ^ Beals, Katharine P. (2022-06-24). Cutting-Edge Language and Literacy Tools for Students on the Autism Spectrum. IGI Global. p. 234. ISBN 978-1-7998-9444-5.
- ^ "Who We Are - National Council on Severe Autism - Team — NCSA". National Council on Severe Autism. Retrieved 2024-10-14.
- ^ a b Lutz, Amy S. F. (14 January 2019). "National Council on Severe Autism (NCSA) Launches". Psychology Today. Retrieved 2024-10-24.
Further reading
- 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. ISBN 978-0-19-768384-2. Book by NCSA founding board member.
- Lutz, Amy S. F. (2020). We Walk: Life with Severe Autism. Cornell University Press. ISBN 978-1-5017-5140-0. Book by NCSA founding board member about her family's experience.