I am sharing this blog and adding my comments here because NOS Magazine tends to censor comments that may disagree with some of their opinions. I actually think this was a healthy discussion rather than a “fiery exchange” or terms that I have read about the conversation.
The comment that I attempted to post on NOS Magazine is below:
“I would like to respond to this article and to the IACC also with regards to the issues raised regarding the spectrum and does the diagnosis of “Autism Spectrum Disorder” really mean anything at all anymore.
After the engaging conversation between some self-advocates who identify as “autistics”, a mother of a severely affected child with autism and also guardian of her brother with autism, Director Dr. Joshua Gordon and Dr. Geraldine Dawson, it became very clear that these members realize there are some major problems with trying to reign in on the needs of this extremely heterogeneous population.
Dr. Gordon repeatedly stated comments about having a situation where we don’t know a better way to describe autism except as a spectrum and that we do not have diagnostic differences to create different labels within the spectrum.
Sam Crane then mentioned that the DSM V now uses the term “spectrum” because it also can be described as ASD with a specific characteristic. Dr. Geraldine Dawson then clarified that comment further by explaining that in the DSM V the diagnosis of ASD was meant to be used with specifiers.
• With or without accompanying intellectual impairment
• With or without accompanying language impairment
• Associated with a known medical or genetic condition or environmental factor
• Associated with another neurodevelopmental, mental, or behavioral disorder
• With catatonia
Even without the above specifiers there is also criteria within ASD that indicate 3 different severity levels based on social communication and restricted behaviors.
I would also like to add that in addition to the above information there are also many genetic syndromes which have autism included in some of the characteristics of that syndrome. The primary diagnosis for these people would be the syndrome and autism would be a secondary diagnosis.
For instance, I work with two young men about the same age who both have Fragile X syndrome. One of these men has autism and the other one doesn’t. There is a huge difference in their level of functioning based on the autism diagnosis. This person needs extensive supports (24-hour residential care) while the person without autism continues to live with his parents, has a job and is out and about in the community independently shopping and getting around on the bus.
Some of these syndromes also cause an intellectual disability and/or schizophrenia or other mental health disability. From what I have seen it is the people with a combination of various diagnoses in the DSM 5 that tend to need the most intensive support and may also be the ones who are not able to advocate for their own needs. This is why it is critical to have parent/guardians/caregivers or other advocates come to the table to speak on their behalf.
Update: As I expected my comment was not allowed to be published on the NOS blogsite. They practice censorship and exclusionary actions and do not tolerate “Neurodiversity” if it does not agree with their opinion.
On Tuesday, a fiery exchange took place between autistic advocates and autism parents the quarterly Interagency Autism Coordinating Committee meeting about inclusion, civil rights, and the usefulness (or lack thereof) of functioning labels. IACC is a government advisory panel responsible for setting federal research priorities. Only three of the 31 IACC members are autistic themselves.…