NCSA Statement: HHS National Autism Missing and Endangered Person Alert Initiative — August 2026
For Immediate Release: August 22, 2026
National Council on Severe Autism
Contact: Jill Escher
info@ncsautism.org
National Council on Severe Autism Applauds HHS Autism Initiative
The National Council on Severe Autism (NCSA) welcomes the National Autism Missing and Endangered Person Alert initiative announced August 21 by the U.S. Department of Health and Human Services, in partnership with the Department of Justice and the Federal Emergency Management Agency. NCSA called for these measures in 2018, in one of the first position statements it issued.
That NCSA statement endorsed "the use of appropriate technological support, as may be needed, such as cameras, recording devices, door chimes, locks, and tracking devices, to help monitor the safety of persons with severe autism where safety requires persistent oversight." It supported "measures such as 'Kevin and Avonte's Law,' which allows Justice Department funds to be used to train teachers and first responders, as well as to provide tracking devices and other technology to families whose children are at risk of wandering."
The initiative announced this week takes up those same measures, with the federal reach and the interagency coordination necessary to bring vision into action. Wandering and elopement are not edge cases in this population. They are compulsions, common, and lethal.
The announcement also commits the Health Resources and Services Administration to increasing graduate training on recognizing diagnostic overshadowing and co-occurring medical conditions. For people with severe forms of autism and related disorders, sudden behavior change often signals something medical, neurological, or psychiatric that words cannot name. When clinicians attribute that change to autism itself, the real cause stays hidden and appropriate treatment is delayed.
NCSA has been vigorously working that gap. This spring, NCSA and the Autism Science Foundation co-funded a five-session Project ECHO on Catatonia in Autism, hosted by Nationwide Children's Hospital, training 52 clinicians from 36 learning sites across 15 states. That is a meaningful number, but training the medical workforce at national scale requires a federal commitment—one NCSA is proud to endorse.
“Parents often live in a state of constant vigilance, knowing they could lose their children with autism in an instant due to wandering and elopement,” said NCSA president Jill Escher. “Our children's lack of safety awareness, combined with impulsivity, can often be a deadly combination. We are grateful to see a federal framework to improve coordination to respond to these dangerous incidents.”
NCSA also provides families a one-page diagnostic overshadowing guide to take to providers and distributes the ER-IDD Stabilization Protocol, a quick reference guide for emergency department staff treating patients with I/DD. In 2021, NCSA executive director Jackie Kancir worked successfully to have the protocols developed and adopted through collaboration with multiple Tennessee state agencies and Vanderbilt TRIAD, drawing on the Prescriber Guidelines from the National Center for START Services.
“Lacking the capacity to identify where something hurts is a call for compassionate thorough diagnostics, not an assumption the visible behaviors are the problem,” said Kancir. “My family learned firsthand how diagnostic overshadowing can traumatize a patient and delay appropriate care, and I support any effort to prevent another family from experiencing that.” The protocols are now part of the Vanderbilt Kennedy Center I/DD Toolkit for medical providers, and they circulate nationally through The Link Center, the resource hub operated by the National Association of State Directors of Developmental Disabilities Services under funding from the HHS Administration for Community Living.
The August 21 announcement also cites recommendations approved at the Interagency Autism Coordinating Committee's April 28, 2026 meeting, among them a proposal to establish a "Profound Autism" designation.
NCSA's support for the safety and clinical measures announced this week is separate from the concerns it filed in Public Comment with the Interagency Autism Coordinating Committee on August 20. NCSA asked the Committee to restore intellectual disability as a qualifying pathway within the definition of profound autism, consistent with the Lancet Commission and the 2026 international Delphi consensus, and requested disclosure of the deliberative process behind its April 2026 materials. Those concerns stand.
Federal safety policy and federal research policy must describe the same population. The scientific consensus on profound autism is established. Building federal safety policy on a different definition would leave no way to measure whether these measures reached the children and adults they were designed to protect.
For media inquiries, email info@ncsautism.org.
________________________________
About National Council on Severe Autism:
The nonprofit NCSA is the nation's leading voice pursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders. More information: NCSAutism.org.
