Problematic Organization: National Council on Severe Autism

The National Council on Severe Autism (NCSA) is a not for profit organization that seeks recognition, policy and solutions for autistic people. They are anti acceptance. Calls our movement a hoax. As in the name, they breathe functioning labels. The community knows how harmful they can be. They believe in “many autisms” This goes back to Billy Mann’s “autism lite.”

NCSA was founded in May of 2018 by Jill Escher, Feda Almaliti, Amy Lutz, and Alison Singer (who left Autism Speaks to start this organization). Alison Singer is the president of the Autism Science Foundation. NCSA is the first group to advocate for “severe autism.” This is a controversial organization, which goes without saying. Its goals are medical treatment and additional support. They take away from other autistic people.

The main focus of this organization is to promote needs of “those affected by autism.” This includes any cognitive and functional “impairments.” This is for people who need continuous, lifelong services, supports, and supervision. People who fall under this category often are nonverbal and exhibit challenging behaviors. The supports are housing, developmental services and research. They push “interventions.” We all know this means ABA and other abuse therapies. They want us to appear neurotypical.

The NCSA has pushed controversial issues such as guardianship, crisis care, employment and what qualifies as a community based setting. They support the option of appointing a guardian to make decisions for a person who needs more support, when necessary. According to the NCSA, the number of studies on “severe autism” have gone down. Autistic people can advocate for themselves, if given proper accommodations. We as a community need to be able to advocate for ourselves. There are no autistic people on the board of directors. The neurotypicals think they know what is best for us.

Kimberlee McCafferty, a parent of an autistic child and a writer, wrote that as a parent of a “severely” autistic child, she supports the organization because it gives her the opporutnity to discuss challenges of “severe” autism. She says that the challenges are not protrayed in the media. They go on to say that autism can be dangerous (How?)

In January 2019, about 1,500 people signed up for the news letter and 2,000 people follow the facebook page. On April 18, 2019, the group has 4,500 members .

Why autistics do not like this organization:

According to Shannon Des Roches Rosa, the senior editor for Thinking Person’s Guide to Autism, NCSA takes away from the autonomy from autistic people. She says the organization wants parents or guardians to make decisions for autistic individuals. There are no autistic people on the board of directors. Amy Lutz, NCSA secretary, says that the people who they serve cannot advocate for themselves. “We fully support self-advocates pursuing the support they need, but this is completely seperate.”

Nothing about us, without us!

Refusing to Condemn the Use of MMS and other Dangerous “Treatments”

We are still waiting for NCSA to condemn MMS even when it made international news. They said nothing about the autistics and our allies workto get this done. They even go as far as to call us the “neurodiversity mob”
When confronted with this issue on my facebook page, they were quick to tell me I was wrong and when we asked when and where they condmn it, SILENCE. The silence and indifference says a lot about them. The post is embedded below:

Death by Severe Autism

You read this right. There was an article by NCSA written about when Feda Almaliti and her son Muhammad died tragically in a house fire. She did not say the fire killed them but “severe autism.” When autistics spoke out about it, they decided to close the article from comments because it got too real for them. Do not assume just because a person can type, they are able bodied.

NCSA Back’s Sia’s Misrepresentation of Autism

Thats right, NCSA defended Sia with her representation of autism. There was prone restraint, flashing lights and other sensory stimuli to cause seizures and sensory overload. This was supposed to be a “love letter” to the autistic community.
NCSA said to stop hating on Maddie Zeigler. No one was hating on her, we all felt sorry for her. Sia took advantage of her position with Maddie and talked her into doing it.
NCSA article:

  1.  “Business Search – Business Entities – Business Programs | California Secretary of State” Retrieved 14 February 2019.
  2. ^ “Who we are — NCSA”National Council on Severe Autism. Retrieved 18 January 2019.
  3. Jump up to:a b Opar, Alisa (24 April 2019). “In search of truce in the autism wars”Spectrum. Retrieved 24 April 2019.
  4. ^ Opar, Alisa (May 6, 2019). “A medical condition or just a difference? The question roils autism community”. Washington Post. Retrieved 12 May 2019.
  5. Jump up to:a b c d Opar, Alisa (4 February 2019). “New group faces backlash over its goals for severe autism”Spectrum. SFARI. Retrieved 4 February 2019.
  6. ^ Lutz, Amy S.F. “National Council on Severe Autism (NCSA) Launches”Psychology Today. Retrieved 18 January 2019.
  7. ^ Diament, Michelle (17 January 2019). “New Group To Focus On Severe Autism”Disability Scoop. Retrieved 18 January 2019.
  8. ^ McCafferty, Kimberlee (29 January 2019). “National Council on Severe Autism”Point Pleasant, NJ Patch. Retrieved 30 January 2019.
  9. ^ Taylor, Katie. “New Autism Advocacy Group Provides Hope For Some Parents, Infuriates Others”The Autism Site Blog. Retrieved 12 February 2019.
  10. ^ “NCSA Opposition Statement”Maine Autism Collective. Retrieved 2019-04-22.

3 thoughts on “Problematic Organization: National Council on Severe Autism

  1. Pingback: Rebuttal: Dangerous World of Marginalizing Autism Parents - Fierce Autie

  2. Pingback: Problematic Organization: Autism Speaks - Fierce Autie

  3. Pingback: Problematic Organization: Autism Science Foundation - Fierce Autie

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