Autistic History: The National Council on "Severe" Autism
Autistic History: The National Council on "Severe" Autism
{ID: Light grey background with a white dandelion that is on a dark brown surface with a reflection in gold of the same flower upside down, with text in red font that reads: "Every time I see a child suffering in the hands of extremists, I paint a mental image of a flower that is white falling to the ground in my head."}
CW: Ableism, Racism, Anti-Semitism, Transphobia, etc.
Huge content warning on this blog post.
Huge content warning on this blog post.
There is this notion that Autism Speaks is the only very harmful org in this society. Unfortunately, they are not the only ones. The NCSA, aka the National Council on "Severe" Autism are an organization run by parents of nonspeaking children. These parents are not autistic, they speak for their children regularly. If a parent is commonly speaking for their child, and not allowing that child to have their own voice (while refusing to presume competence), that is ableist. Children who are completely nonspeaking, as well as adults *do* deserve acceptance. And right now, this organization spends its days targeting the adult autistic community, rather than assisting or helping us receive equity in this country. They are very much a hate organization, and have referred to my community as "murder hornets". Yes, Alison Singer, founder of the NCSA is one who absolutely hates and detests autistic adults. The NCSA, unlike Autism Speaks, did not make any public statement supporting the ban of MMS in 2020 by the US FDA, which is proof that they are vehemently for and still are for eugenics. Eugenics is something that my community, still in 2022, faces, especially filicide. The Disability Day of Mourning on March 01, 2022 is coming up, and this blog post is on the history of NCSA's harm, as well as what they are currently doing to harm the autistic community. Yes, Autism Speaks worked with the Spectrum10k project, and more information related can be found here.
The NCSA is a nonprofit organization that "pursues recognition, policy and solutions for individuals, families and caregivers affected by severe forms of autism and related disorders," (source). We all know that functioning labels do much harm and damage to nonspeaking autistics, and these parents don't really seem to care. The organization was founded in May 2018 by Jill Escher, Feda Almaliti, Amy Lutz, and Alison Singer. All of these parents have extremist, nationalistic and fascist views about what autism should be in society. They routinely target autistic adults, threatening, silencing, manipulating, stalking, and harassing them. The NCSA is largely, if not completely, self-funded.
Board:
1. Alison Singer: She is the founder of the NCSA, and was formerly on Autism Speaks' board back in 2009. She is the president as well of the Autism Science Foundation, which is a pro-ABA, behaviorist focused company, routinely spreading misinformation about autism. She, in an interview with a documentary, titled: "Autism Every Day" back in 2006 (on May 9th) talked about driving her autistic daughter off a cliff. Proof? Here you go, but don't say I didn't warn you that the video is very potentially triggering for autistics reading this blog post, as well as parents. On May 17, 2006, she wrote an article talking about a cure for autism with Autism Speaks, as an "Article of Understanding". A lot of NTs and allistics don't know this, but Alison is one of the main reasons why a LOT of autistic people do not support or enjoy autism speaks. And, she's one of many that people protested in the early 2000s. In 2007, Alison was appointed by the IACC to be on their committee as a public member. Examples of how those meetings run can be found here. Alison "helps" out with strategic plan reviews and is on a subcommittee for that. She is also currently on the following:
Yale Child Study Center Associates Committee: Board Member
2. Jill Escher: Jill here is the President of the NCSA. She is the one who refers to autistic people as "murder hornets", which we all know is a psychological projection of hers. Jill is a parent, like Alison. She wrote an article through the San Francisco Autism Society to intentionally target autistic children and adults, titled "The Autism Matrix". Here is why the whole article she wrote is just not accurate. Jill and several others have been profiled, thankfully, by Autism Against Fascism. She works, like Alison does, with the autistic dark web, who are a bunch of extreme right wing fascists and nationalists. Some more of her work can be found on NCSA's site. She is also the president of the Autism Society in the San Francisco Bay area. She also serves on the governing council of the Environmental Mutagenesis and Genomics Society. Rebuttals to her rhetoric against the Neurodiversity movement can be found through the autistic community, and here is one example.
3. Amy SF Lutz: Amy is a founder of the NCSA, and the current Vice President. She lives in Pennsylvania while her son is being institutionalized at the Judge Rotenburg Center. She writes about autistics in a very ableist way at Inspectrum for Psychology Today. She is also the author of Each Day I Like It Better, which is an ableist book. She is one of the founders of EASI Foundation: Ending Aggression and Self-Injury in the Developmentally Disabled (not including a link because it promotes ABA, and it really doesn't help. If anything redirection needs to happen, but autistic children act out because of environmental stimuli, not because of their marginalized identities). She has spoken at the IACC (Interagency Autism Coordinating Committee) and ISEN (International Society for ECT and Neurostimulation). Rather than help us, she would rather promote a cure and eugenics. She is currently pursuing a PhD in History and Sociology of Science at University of Pennsylvania. She is the mother of five children, including one autistic child. In 2020, she wrote an article called "When Autism Advocacy is Partial", attacking neurodivergent folks for promoting and encouraging acceptance and neurodiversity. Amy has worked, unfortunately, with Judith Newman, who is the author of To Siri, With Love. I wrote about her in this blog post here. Judith is not on the board of the NCSA, but regularly works with Amy and others. She is a huge supporter of the Autistic Dark Web, and the book she wrote is on the subject of *Forced, Non-Consented Sterilization*, which is abusive. She forced her own son to become sterilized. Judith is mentioned here in this times article, written by Amy Lutz.
4. Feda Almaliti won't be talked about for a bio because she isn't white, nor white passing, and I'm white, and I don't want people going after her. However, what I will STILL continue to say is that this link is accurate and more reliable on the subject of what harm she actually has done, and is written by someone who is middle eastern. She's not listed publicly on the board for the NCSA, but is a founder of the NCSA. I am agreeing with the folks who aren't white because their voices matter. But also, because I am amplifying Black folks like Emma, and others like Aviva, Morenike, Lydia, Alice, etc.
There are others on their board that are there involved, but not as loud online. Any of them can be found on NCSA's site.
NCSA have done a lot of damage regarding supporting and encouraging Sia's abuse directed at autistic folks. There was prone restraint, flashing lights and other sensory stimuli to cause seizures and sensory overload in this movie, Sia called someone a "bad actor", supported and invited Autism Speaks to the film project to work with her, etc, for funding. When Autistics asked Sia to take the restraint scenes out, she said she would, but never actually did, and this was all back in January of 2021. Come January 21st of 2022, Sia has a relapse, needs actual help, and blames the whole community for her suicidal thoughts. No one deserves to have those thoughts, but blaming an entire community when we all know Sia did harm says everything about Sia, and I will never support her work again. Sia had an ally, Kathy Griffin, outright target people and attack people on Twitter for causing Sia's thoughts, even though the suicide risk is at 72% right now in the autistic community. Sia, therefore, is not a victim in all of this, nor is Kathy Griffin, nor the NCSA. Sia is allowed to feel a certain way, but acting out on the harm like this for her is pretty ableist, and racist. She does a lot of harm targeting BBIA autistics by saying these things. This was supposed to be a “love letter” to the autistic community. The NCSA said to stop hating on Maddie Zeigler. No one was hating on her. Rather, we all felt sorry for her, as I was literally there witnessing tweets on Twitter that week that Sia targeted all of us. Sia took advantage of her position with Maddie and talked her into doing it. When THAT many autistics speak out against her behavior, no its not a dogpile, it's online activism, meant for accountability. People were masking, being respectful to Sia and she lashed out at us.
The NCSA also regularly work with the Autistic Dark Web, including folks like Thomas Clements, Varg Vikernes, and Johnathan Mitchell.
NCSA's logo, here:
The NCSA is a nonprofit organization that "pursues recognition, policy and solutions for individuals, families and caregivers affected by severe forms of autism and related disorders," (source). We all know that functioning labels do much harm and damage to nonspeaking autistics, and these parents don't really seem to care. The organization was founded in May 2018 by Jill Escher, Feda Almaliti, Amy Lutz, and Alison Singer. All of these parents have extremist, nationalistic and fascist views about what autism should be in society. They routinely target autistic adults, threatening, silencing, manipulating, stalking, and harassing them. The NCSA is largely, if not completely, self-funded.
Board:
1. Alison Singer: She is the founder of the NCSA, and was formerly on Autism Speaks' board back in 2009. She is the president as well of the Autism Science Foundation, which is a pro-ABA, behaviorist focused company, routinely spreading misinformation about autism. She, in an interview with a documentary, titled: "Autism Every Day" back in 2006 (on May 9th) talked about driving her autistic daughter off a cliff. Proof? Here you go, but don't say I didn't warn you that the video is very potentially triggering for autistics reading this blog post, as well as parents. On May 17, 2006, she wrote an article talking about a cure for autism with Autism Speaks, as an "Article of Understanding". A lot of NTs and allistics don't know this, but Alison is one of the main reasons why a LOT of autistic people do not support or enjoy autism speaks. And, she's one of many that people protested in the early 2000s. In 2007, Alison was appointed by the IACC to be on their committee as a public member. Examples of how those meetings run can be found here. Alison "helps" out with strategic plan reviews and is on a subcommittee for that. She is also currently on the following:
Yale Child Study Center Associates Committee: Board Member
Autism Baby Siblings Research Consortium: External advisory board member
Seaver Autism Center at Icahn School of Medicine at Mount Sinai: Executive Board Member
Marcus Autism Center at Emory University: Executive Board Member
Autism Research Center at University of North Carolina: Executive Board Member
CDC Center for Birth Defects and Developmental Disabilities: External Advisory Board Member
New York State Immunization Advisory Committee: Member
Scarsdale Board of Education: Vice President
National Institute of Mental Health’s Alliance for Research Progress: Member
Mental Health News: Board member
American Academy of Pediatrics New York State Immunization Coalition: Member
International Society for Autism Research (INSAR): Public relations committee chairperson.
International Meeting for Autism Research (IMFAR): Program committee member Community Advisory committee member.
Simons Foundation Spark! advisory board: member
SFARI launched Simons Foundation Powering Autism Research (SPARK), an online research initiative designed to become the largest autism study ever undertaken in the United States. For researchers, SPARK provides a large, well-characterized cohort of genetic, medical and behavioral data, and will result in cost-savings for researchers by reducing start-up costs for individual studies.
***Note: All the language above is cited, but in no way do I condone the ableist language.
Source: International Badass Activists
***Note: All the language above is cited, but in no way do I condone the ableist language.
Source: International Badass Activists
3. Amy SF Lutz: Amy is a founder of the NCSA, and the current Vice President. She lives in Pennsylvania while her son is being institutionalized at the Judge Rotenburg Center. She writes about autistics in a very ableist way at Inspectrum for Psychology Today. She is also the author of Each Day I Like It Better, which is an ableist book. She is one of the founders of EASI Foundation: Ending Aggression and Self-Injury in the Developmentally Disabled (not including a link because it promotes ABA, and it really doesn't help. If anything redirection needs to happen, but autistic children act out because of environmental stimuli, not because of their marginalized identities). She has spoken at the IACC (Interagency Autism Coordinating Committee) and ISEN (International Society for ECT and Neurostimulation). Rather than help us, she would rather promote a cure and eugenics. She is currently pursuing a PhD in History and Sociology of Science at University of Pennsylvania. She is the mother of five children, including one autistic child. In 2020, she wrote an article called "When Autism Advocacy is Partial", attacking neurodivergent folks for promoting and encouraging acceptance and neurodiversity. Amy has worked, unfortunately, with Judith Newman, who is the author of To Siri, With Love. I wrote about her in this blog post here. Judith is not on the board of the NCSA, but regularly works with Amy and others. She is a huge supporter of the Autistic Dark Web, and the book she wrote is on the subject of *Forced, Non-Consented Sterilization*, which is abusive. She forced her own son to become sterilized. Judith is mentioned here in this times article, written by Amy Lutz.
4. Feda Almaliti won't be talked about for a bio because she isn't white, nor white passing, and I'm white, and I don't want people going after her. However, what I will STILL continue to say is that this link is accurate and more reliable on the subject of what harm she actually has done, and is written by someone who is middle eastern. She's not listed publicly on the board for the NCSA, but is a founder of the NCSA. I am agreeing with the folks who aren't white because their voices matter. But also, because I am amplifying Black folks like Emma, and others like Aviva, Morenike, Lydia, Alice, etc.
There are others on their board that are there involved, but not as loud online. Any of them can be found on NCSA's site.
NCSA have done a lot of damage regarding supporting and encouraging Sia's abuse directed at autistic folks. There was prone restraint, flashing lights and other sensory stimuli to cause seizures and sensory overload in this movie, Sia called someone a "bad actor", supported and invited Autism Speaks to the film project to work with her, etc, for funding. When Autistics asked Sia to take the restraint scenes out, she said she would, but never actually did, and this was all back in January of 2021. Come January 21st of 2022, Sia has a relapse, needs actual help, and blames the whole community for her suicidal thoughts. No one deserves to have those thoughts, but blaming an entire community when we all know Sia did harm says everything about Sia, and I will never support her work again. Sia had an ally, Kathy Griffin, outright target people and attack people on Twitter for causing Sia's thoughts, even though the suicide risk is at 72% right now in the autistic community. Sia, therefore, is not a victim in all of this, nor is Kathy Griffin, nor the NCSA. Sia is allowed to feel a certain way, but acting out on the harm like this for her is pretty ableist, and racist. She does a lot of harm targeting BBIA autistics by saying these things. This was supposed to be a “love letter” to the autistic community. The NCSA said to stop hating on Maddie Zeigler. No one was hating on her. Rather, we all felt sorry for her, as I was literally there witnessing tweets on Twitter that week that Sia targeted all of us. Sia took advantage of her position with Maddie and talked her into doing it. When THAT many autistics speak out against her behavior, no its not a dogpile, it's online activism, meant for accountability. People were masking, being respectful to Sia and she lashed out at us.
The NCSA also regularly work with the Autistic Dark Web, including folks like Thomas Clements, Varg Vikernes, and Johnathan Mitchell.
NCSA's logo, here:
Source: Here
Right now, the NCSA is doing a terrible thing by trying to change the autism definition in the DSM, which could take away services for other autistics and only would benefit folks who are entirely nonspeaking. This is a cult-like agenda, for several reasons:
*Autism is not quantitative
*Autistic folks' support needs can fluctuate
*Folks who are entirely nonspeaking do not deserve to be institutionalized, shocked, restrained, etc.
*Attaining an autism diagnosis here in the States is a privilege and women, trans, and nonbinary folks have a much more difficult time getting diagnosed, especially autistics who are Black, Brown, Indigenous, and Asian, as well as Pacific Islander.
*Autism self diagnosis is valid, and we need to start providing more folks with diagnoses, so they can get the services they need.
*There are red tape barriers in place currently for folks who are already diagnosed, and not enough folks are educated, or aware that Neurodiversity training exists, but needs to be led by neurodivergent folks, and not non autistic/non neurodivergent folks.
*Applied Behavioral Analysis does not work, as reported by the US Department of Defense.
*Natural consequences are not ABA, therefore ABA is not within every behavior, and the arguments that the ABA therapists make are ableist, racist, etc.
*Defunding ABA and providing alternatives, as well as other certifications in therapy for ABA therapists who want to leave the field are critical and vital right now.
*These parents don't speak for the community, at all. They can speak *with* their children, but they don't have the lived experiences and cannot speak for.
Please if you have the time, submit a public comment to the IACC ASAP before April 2022! The Interagency Autism Coordinating Committee needs to hear more neurodivergent voices, so please help us out. Thank you. If you are not autistic, but still want to comment, please comment in support of Neurodiversity, etc.
*Autism is not quantitative
*Autistic folks' support needs can fluctuate
*Folks who are entirely nonspeaking do not deserve to be institutionalized, shocked, restrained, etc.
*Attaining an autism diagnosis here in the States is a privilege and women, trans, and nonbinary folks have a much more difficult time getting diagnosed, especially autistics who are Black, Brown, Indigenous, and Asian, as well as Pacific Islander.
*Autism self diagnosis is valid, and we need to start providing more folks with diagnoses, so they can get the services they need.
*There are red tape barriers in place currently for folks who are already diagnosed, and not enough folks are educated, or aware that Neurodiversity training exists, but needs to be led by neurodivergent folks, and not non autistic/non neurodivergent folks.
*Applied Behavioral Analysis does not work, as reported by the US Department of Defense.
*Natural consequences are not ABA, therefore ABA is not within every behavior, and the arguments that the ABA therapists make are ableist, racist, etc.
*Defunding ABA and providing alternatives, as well as other certifications in therapy for ABA therapists who want to leave the field are critical and vital right now.
*These parents don't speak for the community, at all. They can speak *with* their children, but they don't have the lived experiences and cannot speak for.
Please if you have the time, submit a public comment to the IACC ASAP before April 2022! The Interagency Autism Coordinating Committee needs to hear more neurodivergent voices, so please help us out. Thank you. If you are not autistic, but still want to comment, please comment in support of Neurodiversity, etc.
{ID: “(Waves in greeting.)
I see tons of #ActuallyAutistic folx chiming in on #Sia today, & I hope that you all will devote the same fervor to going to this link: https://iacc.hhs.gov/mee.../public-comments/submit/index.jsp to quickly make Public Comments for the upcoming US federal autism IACC meeting in April 2022. /1”
“I realize making Public Comment about #autism research & policy is not trendy nor exciting like celebrity news, BUT it’s a platform: https://t.co/bMRDiNJmVB to potentially help influence important issues impacting the lives of millions of autistic ppl & their families. /2”
“These “warrior moms” clearly feel threatened as this is the 1st time in its 12+ year existence that there have been more than 2 public IACC members who are openly autistic. They stop at nothing to disregard & discredit us so they can push their segregationist eugenic agenda. /4”
“They’re very focused. They rally their (handful of the same) supporters faithfully, who, in true obedient brainwashed sheeple fashion, flood the Public Comments with repetitive remarks about how much they are suffering because of autism & various causation conspiracy theories. /5”
“Go back & read the current comments. Read the archives. These ableist, narcissistic people are FRONT & CENTER, engaging ppl at the highest levels of government re autism bemoaning their circumstances & getting their voices heard with only us 7 autistic members to counter them. /6”
“And when we do so, they resort to manipulative emotive tactics. Pull a Karen about how they’re being “bullied” & call us “fake” or “high functioning” autistics. Then they blatantly exploit their children’s sensitive moments & challenges, & when need to, resort to abled tears. /7”
“Their tactics, though underhanded, are effective AF. Month after month autism parent “advocates” pressure the powers that be to consider regressive “solutions” that disempower the most vulnerable people in the autistic community while many of y’all are nowhere to be found. /8”
“So if you have 90 seconds to tweet & retweet about Sia, your @$$ has time & spoons to make a freaking public comment. At least balance out the d@mn voices. We need people to press for funding for AAC, comprehensive in-home & community supports, for services over the lifespan. /9”
“I’m #AskingAutistics to denounce harmful practices - yes, they’re still torturing disabled people who look like me & my kids, even if the #StopTheShock hashtag stopped trending. (Grateful that @Russell_Lehmann took the time to make a comment this month about the #JRC abuse.) /10”
Read balanced, thoughtful public comments from Oct & Jan from @autselfadvocacy & @IEC_IDD. From @LindseyNebeker & @shannonrosa. From parents concerned about safety; the huge racial & cultural inequities; the lack of services. And add your voice https://t.co/bMRDiO0XN9 /end”
“Just quickly amending the thread as I realized that it might be helpful to give some additional context! For those unfamiliar or who’d like a refresher, volunteers are appointed to serve on the IACC to advise on all federal/national US autism efforts: https://t.co/S7xl2LPzJL /PS1”
“The IACC is federally mandated to exist to advise on autism related matters nationally. There are 20+ members appointed who represent different federal agencies & there are 20+ members who represent the public. The newest group will serve until 2024: https://iacc.hhs.gov/news/2021/iacc-new-members.shtml”
“The link provided is one possible resource with templates/ideas/tips for drafting public comments (in general, not #autism-specific) that people, whether #ActuallyAutistic or not, might find helpful: https://publiccommentproject.org/how-to”
This url: https://t.co/NvUhXFsrim shares links to read current IACC public comments as well as past (archived) ones from Jan 2022, Oct 2021, July 2021…all the way back to 2007. An ongoing, obvious theme of ableism & eugenics & almost no counter-narratives or opposing views. 😞”
“(Apologies for any duplicates.) Public comment is for everyone - the comment from the “regular” person living their life is of tremendous value because you bring “lived expertise.” Here’s another optional, more user-friendly template: https://t.co/xf4vu7TvLX”
"The link provided is one possible resource with templates/ideas/tips for drafting public comments (in general, not #autism-specific) that people, whether #ActuallyAutistic or not, might find helpful:"
“Quick tweet to express my gratitude for everyone’s support in making public comments & RTing. I’ve tried to type this many times, but my words keep failing me; I don’t have the vocabulary to convey the depth of my appreciation. All I can offer is thank you, truly, from my heart.”}
All I ask is that you, reader, speak up and use allyship to the best that you can.
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