06/05/2026
It’s unacceptable that federal IACC members come to the table having done no homework on past meetings or community priorities.
Katie Wright has been our official chronicler of the Interagency Autism Coordinating Committee since its inception. Below are her thoughts about topic of the critical threat of death from wandering from the April 28, 2026 first meeting of the new IACC. She holds feet to the fire like marshmallows on s’mores night at camp. It’s our honor to continue to showcase her writing. To see her catalog here at Age of Autism, go to: AgeofAutism.com/KatieWright
By Katie Wright
One after another, the IACC federal members stated that they “needed more time to do the reading,” before voting on a recommendation to designate a category for “Profound Autism” and declare wandering/ elopement an emergency.
“I have a son with severe autism. I am a single parent. I have two jobs and was up until 2 am at night finishing the reading packet, because this is so important.” Lisa Wiederlight responded.
Katie Sweeney, mom of a profoundly ASD young man stated, “Federal members have had twenty -five years to do the reading.”
Laura Cellini, “None of the related research in profound autism information packet is new. The seminal autism GI paper by Buie is fifteen years old.”
Federal members suggested holding another meeting with profound autism experts to further discuss the need to create a separate designation for “profound autism.”
I wanted to shout at the screen, “The experts are in the room!”
This is not Xavier Becerra’s HHS anymore. Becerra sat in his office for four years, doing little and saying less. The new HHS sheriff in town is Secretary Kennedy, and he wants action and deliverables. The federal IACC members repeatedly expressed apprehension that their boss might not agree with creating profound autism category. Additionally, and inexplicably, the Feds were uneasy about declaring elopement and wandering and national emergency. Every month, seven or eight autistic children die wandering. Kennedy, their boss, has frequently expressed a specific desire to help those severely affected with autism. There is no for reason for concern that HHS would disagree with recommendations to address the life and death concerns of this underserved population.
Detailed and extensive scientific research on co-occurring conditions was presented by Laura Cellini.
Catherine Lord
The Profound Autism subgroup are most likely to be affected by painful GI disorders, perpetual night wakefulness, seizures, death by seizures, death by drowning, self-injurious behavior, etc.… Since Dr. Catherine Lord, unwisely and irresponsibly, jettisoned the term “Asperger’s,” those on the severe side of the spectrum have all but disappeared in the research and the media.
Pre Lord’s disastrous reclassification, Asperger’s would never have been allowed to compromise 70% of all autism research, as it does now. There is an understanding that HFA people are a minority in the spectrum and have largely social and emotional challenges, not life and death problems. HFA population are the least affected by dangerous medical conditions like epilepsy and wandering. Because Lord collapsed all HFA and Profound Autism into one category, the easiest, least controversial research has been funded. Research on healthy HFA people now receives, incredibly, 70% of all NIH ASD funding! Not even federal members were arguing this is anything but unjust.
NIH federal member Dr. Andrea Beckel-Mitchener persisted, “I would like to convene a committee of experts and see what Dr. Lord has to say.” Why??? Lord created the problem, yet the NIH believes Lord, somehow, will acknowledge and correct her own mistakes?
Autism mom and public member, Laura Phillips discussed the consequences of the near absence of NIH funded research on autism’s co-occurring conditions. When treatment isn’t studied, the field doesn’t progress and ASD people and their families continue suffering. The gaps in the research are well known, and we cannot address them without a dedicated category.
Nevertheless, EPA federal member Dr. Elaine Cohen stated that we need a committee “to present evidence-based methodologies for classifications.” Laura Cellini and Dr. Fogel just spent an hour presenting that very evidence! Where were you? The research was also in the packets that few federal members bothered to read.
The federal responses made me want to bang my head on my desk. The feds did not read the research in their packet, are insecure about their familiarity with Profound Autism and want to create a new committee to spoon-fed them the knowledge they should already have. No can do.
Thank you to public member Bill Oldham who directed his comments at other federal members. Oldman stated, “Let’s not allow the perfect to be the enemy of the good. In reading the many pages of the very moving public comments, the need for this classification is crystal clear.”
Fogel gave a comprehensive review of profound autism. The acute and unmet needs of those with Profound Autism is severe. Most people with Profound Autism are affected by some, or all, of the co-occurring conditions detailed by Cellini. Medical problems and safety are central to these families. The parents and siblings of those with Profound Autism often live in constant fear of loved one’s self-injurious behavior and/or elopement. Few of these families can afford the professional security system they desperately need.
Dr. Fogel stated that federal members could abstain from the vote, but it was going forward. This wasn’t a vote on a controversial issue. This recommendation asks for a special designation for Profound Autism . It is an EASY call. There is no disagreement that the NIH have failed to address the urgent needs of this group. The neglect of those on severe end of the spectrum has only worsened since Lord re-categorized autism as one condition. Possibly a small minority of the ASD community will object to deleterious connotations of the word “profound,” but meaningful objections will be few.
The only risk was NOT voting for special designation of “Profound Autism.” In failing to support this effort, federal members revealed that few of them even bothered to read the pages of consumer comments. Federal members, once again, revealed their total lack of urgency, and their preference for “discussing and debating” for years on end.
Federal member Dr. Jennifer Johnson urged the committee to take time to “review the recommendations with due diligence in a deliberative process.” Dr. Johnson, you were supposed to review and understand the recommendations BEFORE the meeting. In the IACC agenda, submitted in advance to all committee members, “call to a vote” is clearly listed. Members should have arrived at the meeting having already read all relevant materials and been prepared to vote.
The vote on declaring the elopement of children with autism an emergency should have been the easiest of all! Dr. Fogel presented the need for a recommendation that the wandering and elopement of ASD children and teens be declared an emergency. Roughly, seven or eight children a month die wandering. Approximately, 100 autistic children die every year, via wandering/ elopement. It can happen to the most conscientious parents. I have a friend whose autistic son eloped out of a tiny second story window in the middle of the night.
The recommendation is simple: a Medicaid code for wandering as risk factor and a requirement to reimburse families for security systems/devices. Not one federal member disputed the stats on wandering or the importance of the topic, yet they “needed time to deliberate,” with their bosses. Why? What’s to deliberate? Just imagine if 100 children a year were dying of the measles? The reaction would be swift and comprehensive.
Thank you to the CDC’s Dr. Matthew Maenner of the CDC. Dr. Maenner stated, without reservation, he would be supporting both measures. However, other federal members expressed of multitude of, largely unfounded, concerns. Federal member Megan Kinnane, PhD, was apprehensive about the recommendations vote “following the law,” as if there would be legal repercussions if recommendation not acted upon?
Since the meeting, the HHS General Counsel found that IACC’s recommendations indeed comply with all FACA rules. It is unclear why federal member, Dr. Kinnane, Chief of Staff of the NIH, was so mistaken about FACA laws. Federal members’ lack of preparation has consequences. Kinnane repeatedly asked to delay the vote because she believed it did not comply with the rules. The result would have been many months lost waiting for the NIH to act on these critical IACC recommendations, so important to families.
It’s unacceptable that federal IACC members come to the table having done no homework on past meetings or community priorities. Over ten years ago I contacted a Florida policewoman who initiated a lifesaving anti wandering campaign in her community. The officer came to an IACC meeting and addressed members about the urgency of the issue and the need for home security systems. This was ten years ago! It is past time to recommend ASD wandering be declared and emergency.
Thankfully, both recommendations passed, although some, not all, federal members, abstained.
Thank you to Dr. Sylvia Fogel for leading such an effective meeting and one that resulted in official recommendations reflecting urgent ASD community priorities. It was terrific to be (virtually) introduced to the new HHS National Autism Coordinator, Diana Diaz-Harrison, MA. Ms. Harrison is long time and distinguished disability advocate. Diaz-Harrison has a son with profound autism, is an education professional and the creator and founder of six schools for ASD children in her home state of Arizona. It was wonderful to see the vast knowledge and experience among bother federal and public members. This is the first time IACC membership has reflected the depth and breadth of the autism community.
I look forward to the next meeting!
Katie Wright is a Contributing Editor to Age of Autism.
