We recently became aware of an organization called National Council on Severe Autism that was very recently established. Due to major concerns with the information on this organization, we felt compelled to take action and have penned a letter to a Maine psychiatrist that is a member on NCSA in hopes to gain his understanding and support for the autistic community. The letter on behalf of Maine Autism Collective can be read below.


January 26, 2019

Dear Dr. Matthew Siegel,

We are the Maine Autism Collective and we are writing to voice our concerns regarding the National Council on Severe Autism.  We have learned that you are a new member of this organization and we are reaching out to offer constructive feedback regarding various philosophies and agendas held by NCSA that we feel are problematic.

Autistic Exclusion: There are no autistic people on the council.  While we recognize that you and many of your colleagues have experience in caring for autistic people, we, as autistics, have an unmatched perspective and a lifetime of personal and sometimes also professional experience. Our voices are invaluable in lessening the struggles of our peers.  So far, NCSA has not responded to any concerns voiced by autistic folks on social media and consistently limits the scope of the “Autism community” to parents and professionals. This exclusion is a pattern. Our voices need to be prioritized in the conversation about our lives.

“Severe” Autism and Many “Autisms”: This hurts autistic people.  It creates a divide that is often used to push autistic self-advocates out of meaningful discussion by labeling them “higher functioning,” and therefore stripping them of their valuable lived experience and contribution. It fosters an environment of exclusion that robs people, both autistic folks and their supporters, of advocacy, insight, and innovation that could lead to a higher quality of life for everyone involved. 

Also, as the website states, “severe” autism cannot be defined scientifically.  How can an organization serve a population that cannot be defined?

There is only one autism and it comes with a large variety of traits within a spectrum.  Dividing autistic people up by their functioning labels is subjective and inherently assumes capability.  Doing this without consulting autistic people makes these assessments even less reliable.

NCSA Does Not Strive for Inclusion:  NCSA wants more hospitals, residential facilities, and segregated living environments for disabled people.  It supports funding that would make it easier for segregated living environments to open and operate.  This moves us away from community inclusion and the natural supports that diverse communities foster.

NCSA does not work towards inclusive education.  Instead, it supports the use of restraints and seclusion in schools despite the many instances of injury and death resulting from these methods.  These methods are also dehumanizing, disempowering, and traumatizing.

NCSA supports sheltered workshops and feels it is justified for disabled employees to receive less pay for their labor.  NCSA asserts that disabled people being paid less than minimum wage, and thusly relegated to poverty, is necessary and better for the economy.  Have you ever paid your bills on a disabled person’s wages?  We certainly do not work less hard for that money.  Accessible working environments should not cost us our livable wages and are guaranteed by law through the ADA.

“We face an urgent, mounting crisis”: Autism is neurological and genetic.  Neurology cannot be an epidemic.  Increased understanding and refined diagnostic criteria have led to an increase in diagnosis, but we have always been here.  Historically, autistic people were institutionalized or left undiagnosed, whereas now we are a visible part of our communities. 

We must also be careful about language that labels neurodiversity, especially when genetically related, as a disease that must be cured.  Aside from the fact that this is disturbingly close to discussing eugenics, it also points autistics and their loved ones in the wrong direction when seeking meaningful and safe support. Autism is not a disease.  It is our brains’ wiring.  If you “cure” it, you end who we are.

Treatment and Intervention: This is a great example of looking in the wrong direction for ways to help us and continued focus on these areas is a misuse of energy.  ABA has been shown to greatly increase rates of PTSD in autistic people, stripping us of self-esteem, autonomy, and consent.  This practice suppresses behaviors that allow us to communicate and self-regulate in healthy ways.  If autistic people were given tools and access needed for individualized, reliable communication, many of the “severe” challenges we see would be easier managed or vanish entirely.   Behavior is communication.  We may do things differently, but we are people who have the right to be different and respected. It would be easier and more efficient if non-autistic allies would recognize this.  Too much emphasis is placed on making us indistinguishable from our non-autistic peers.

Seeking a Cure:  NCSA openly seeks to establish a cause for autism.  This, coupled with the labeling of autism as epidemic, is troubling, as it lends itself to discussion of eugenics.  Eugenics is a real movement that has roots in disability culture. The words “cause”, “crisis”, “epidemic”, and “cure” are problematic.  We are not comforted by the specific way in which NCSA’s website defines eugenics.  Again, this is our neurology.  We find efforts to erase our neurodiversity and our lived experiences offensive.

In this same vein, we are concerned with NCSA’s continual assertion about the medical implications of autism.  Autism is not a medical condition.  Comorbid conditions associated with autism are separate from autism itself.  Lumping all these conditions together is inaccurate.  This includes intellectual disability, which is recognized as separate from autism everywhere except for the NCSA website. If you assume our capability, you limit us profoundly.  If you want to help, consider engaging with autistic self-advocates and organizations that are run by and engage directly with the autism community.  Our community is full of wisdom and insight.  We can help, and we are telling you that your organization does not work for us.

Respectfully,

Maine Autism Collective