NCSA Public Comment for January 2022 IACC Meeting

Note: The next federal Interagency Autism Coordinating Committee is January 19, 2022, 10:00 a.m. to 5:00 p.m. ET. This is a virtual event and can be accessed from NIH VideoCast: https://videocast.nih.gov/watch=44055
More information about the meeting can be found here

Request for IACC to carve out specific recommendations regarding U.S. population disabled by profound autism

To the IACC:

The IACC is congressionally mandated to advise the Secretary of HHS on matters regarding autism in the United States. Pursuant to statute, these matters include, among others, research on neurobiology, genetics and epigenetics, neurobehavior, causes (including possible environmental causes), prevention, services, supports, intervention, and treatment of ASD.

There is broad consensus among researchers and clinicians that "autism" is not a single disorder but rather a constellation of different impairments with varying intensities and functional capacities. Unsurprisingly, we see growing support for formally separating out subgroups in order to more accurately reflect clinical realities, improve validity of research, and facilitate identification of treatments, services and support.

In particular, the label of "profound autism" identifies a set of patients who suffer intellectual disability and such poor adaptive functioning that they require 24/7 support. This group likely exceeds one-third, and perhaps reaches nearly one half, of the autism population. According to CDC data, as well as data available from states such as California, U.S. autism rates continue to increase. Nearly 60% of children with autism have intellectual disabilities or borderline intellectual disabilities.

We urge the IACC to specifically attend to the needs of the profound autism population, needs which can diverge radically from others having ASD, particularly those who have the capacity for articulate speech, self-advocacy, and self-care.

As this body undertakes its congressionally mandated duty to advise the HHS Secretary regarding specified matters, we urge that it explicitly and intentionally identify research and activities targeted to the realities of profound autism. As mentioned above, pursuant to statute this should include, among others:
• neurobiology
• genetics and epigenetics
• neurobehavior
• causes (including possible environmental causes)
• prevention
• services
• supports
• intervention
• treatment

In recent years, several papers have been published pointing out the woeful dearth of research on this population. As one group of researchers wrote, “Those with intellectual disability or minimal verbal ability are often systematically excluded from research on ASD," resulting in “limited applicability to people who may need the most support.” Greater attention to the unique characteristics of profound autism will lead to greater advances in science and society.

We also urge this committee to add additional public members who are parents of individuals with profound autism. Having strong representation for profound autism — which is notably lacking in the current IACC — is the best way to ensure that appropriate recommendations are made about those who have the least voice and most acute needs.

Thank you for your consideration.

Jill Escher
President
National Council on Severe Autism
NCSAutism.org