Xavier Becerra
Secretary, Department of Health and Human Services
secretary@hhs.gov
Monica Bertagnolli, MD
Director, National Institutes of Health
monica.bertagnolli@nih.hhs.gov
Shelli Avenevoli, Ph.D
Acting Director, National Institute for Mental Health
shelli.avenevoli@nih.hhs.gov
Mandy Cohen, MD, MPH
Director, Centers for Disease Control and Prevention
jb7@cdc.gov
September 13, 2024
Re: Request to withdraw DHHS’s designation of April as “Autism Acceptance Month” for 2025
Dear Secretary Becerra, Director Bertagnolli, Acting Director Avenevoli, and Director Cohen:
This past spring, at the prodding of a corner of the autism community, President Biden signed a proclamation designating April 2, 2024 as "Autism Acceptance Day.” This was a controversial move, since a large portion of the autism community preferred its previous incarnation as the more neutral “Autism Awareness Day,” and find the “acceptance” movement a threat to scientific and social advancement regarding this increasingly prevalent, and often severely disabling, neurodevelopmental disorder.
However, our community was even more dismayed to see, without any public notice or opportunity for comment, Department of Health and Human Services agencies including the National Institute of Mental Health, National Institute of Environmental Health Sciences, the Administration for Community Living and Centers for Disease Control all greatly exceed the executive action to designate all of April 2024 as “Autism Acceptance Month."
As a consequence of this DHHS action we saw the federal government devote an entire month to announcements and events that took a decidedly trivializing and flippant approach to autism while systematically sidelining the grim and difficult realities of autism — and especially severe and profound autism. While the DHHS action may have appeased some in the autism community, the move simply did not align with priorities and values of a vast swath of autism families, many of whom suffer crises across many fronts, including cognitive deficits, challenging behaviors, financial distress, lack of treatment, lack of social services, and scant long-term care options.
We learned the quiet move from “Awareness” to “Acceptance” was prompted by the Office of National Autism Coordination on behalf of DHHS without any public input or process. The Director of External Affairs for ACL approved the change. ONAC thereafter directed DHHS agencies to “update any event titles, documents, blogs, shareables, newsletters, or other communications from your agency that mention the month.”
Predictably, as a consequence of this directive issued unbeknownst to the autism community, we witnessed a stream of federal messaging and actions that reinforced neurodiversity ideology at the expense the urgent issues that don’t fit the “acceptance” narrative such as cognitive dysfunction, aggression, self-injury, property destruction, elopement, pica or the crisis around treatment and long-term care. For some reason, autism was the only neuropsychiatric infirmity meriting a federal acceptance month — we have not seen, for example, a “Schizophrenia Acceptance Month,” or “Major Depression Acceptance Month.”
DHHS’ adoption of “Autism Acceptance Month” not only vastly exceeded the President’s modest action regarding Autism Acceptance Day, its month-long messaging ran counter to public priorities. We therefore ask DHHS to take action to ensure that April reverts to “Autism Awareness Month,” a theme that at least retains some modicum of national urgency over national complacency. However, if the Department chooses to continue to embrace Autism Acceptance Month, we ask that it be followed in the month of May by a "Profound Autism Month” to allow for a more balanced approach, featuring images, speakers and content relevant to the growing crisis around severe and profound autism.
National Council on Severe Autism (ncsautism.org) respectfully requests an online meeting with appropriate point persons to discuss the above and best next steps to ensure an open process throughout HHS and the specific needs of the severe and profound autism community. Please reach out to NCSA’s President Jill Escher at jill.escher@gmail.com.
We look forward to hearing from you and thank you for your kind consideration.
Very truly yours,
Jill Escher
President
Amy Lutz
Vice President
Jacquelyne Kancir
Executive Director
Cc: Dr. Susan Daniels, Office of National Autism Coordination