NCSA submitted the following public comment to the federal Interagency Autism Coordinating Committee for consideration at its October 11, 2023 meeting. Please learn more about the meeting here.
National Council on Severe Autism
September 18, 2023
To the IACC:
As a preliminary matter we wish to express our skepticism regarding the value of submitting a public comment to the IACC. Despite voluminous submissions over the course of this iteration of the IACC from parents, community members, and even elite scientists, we see little attention to the concerns they express and almost no meaningful responsive discourse in the committee. Efforts to voice important ideas and draw attention to serious crises seem to be rather in vain. We consistently hear how the community feels its priorities are ignored and marginalized by the IACC.
That said, we submit the following.
Nearly 30% of autistic children (the percentage among adults may be higher) suffer from Profound Autism according to the CDC. In addition, 61.4% of children with autism have intellectual disability (ID) or borderline ID, according to the CDC (38% have full ID).
Yet the IACC spends a disproportionate amount of time on issues and concerns from those with the privilege of self-advocacy, self-expression, and strong cognitive abilities. The needs of those who cannot effectively self-advocate and who need the highest levels of services and supports seem to be de-valued and ignored.
We therefore request that 30% of each IACC meeting be devoted to the urgent concerns of children and adults disabled by Profound Autism (IQ under 50, or non- or minimally verbal) and at least another 30% be devoted to the concerns of those with ID and borderline ID that does not meet the stringent criteria for Profound Autism.
These topics include: medical interventions for treatment of severe behaviors; the desperate need for more inpatient and outpatient programs for both children and adults; the need for crisis interventions in all communities; the need for more residential programs to serve children with severe behaviors; the tremendous need for more options and models for housing and long-term care of adults with Profound Autism, particularly as autism parents are aging; among others.
To underscore this point, it is unclear from the October 11, 2023 agenda how the featured topic of "Mental Health" will be addressed. The mental health concerns of those with normal IQs typically differs considerably from those with ID. For the former, issues around depression, suicidality, gender dysphoria are often prominent. For the latter, issues of aggression, self-injury, property destruction are often prominent. Anxiety, OCD, and sensory sensitivity seem to be areas of overlap, however, the experience of these pathologies across the groups tend to diverge very substantially. The agenda as currently written does not provide any indication of what is covered under "Mental Health."
Moving forward, to ensure the IACC is properly addressing the needs of those disabled by autism, IACC meetings should very clearly delineate the forms of autism they are addressing with their chosen subject matter and ensure proportionality. The desperate and growing needs of those with Profound Autism, ID and borderline ID deserve full and urgent attention by this committee.
Very truly yours,
Jill Escher
President
National Council on Severe Autism
NCSAutism.org