NCSA was founded in May of 2018 by Jill Escher, Freda 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!
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