MAKE A STAND 4 AUTISM

Unlocking potential through advocacy, research & education.

[MAKE A STAND 4 AUTISM @MakeAStandOrg]

You know what is a human right?

Communication

[Sylvia Fogel MD @FogelSylvia]

It has now been more than a month since the April 28 meeting. During that time, I am aware of at least three deaths involving autistic individuals who wandered or eloped from caregivers. The IACC adopted these recommendations by a significant majority because the risks are real, ongoing, and often fatal. Every delay represents a missed opportunity to improve prevention, education, and emergency response. It is time for action. @NationalAutism

[Sylvia Fogel MD @FogelSylvia]

On April 28, the IACC adopted a comprehensive package of recommendations to address the serious public safety risks associated with wandering and elopement in autism. These recommendations included:

1. Use of the Missing and Endangered Persons (MEP) alert category within the Integrated Public Alert and Warning System (IPAWS) for autism-related wandering and elopement incidents.

2. Updating CDC Wandering and Elopement Webpage

3. Re-evaluating and Expanding ICD-10-CM Coding for Wandering to Capture Clinically Assessed Prospective Risk

4. Updating Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) and Bright Futures Guidance

5. Encouraging Consistent Coverage of Safety Supports under Home and Community-Based Services (HCBS) Waivers

6. Promoting Clinical Adoption of Wandering and Elopement Risk Guidance.

These recommendations can be found here. https://t.co/Og9jnJtBmw

[New York Post @nypost]

New urine test could diagnose autism in children: study https://t.co/QeK44Hz32B

[MAKE A STAND 4 AUTISM @MakeAStandOrg]

@PaulWhiteleyPhD Absolutely!

[MAKE A STAND 4 AUTISM @MakeAStandOrg]

“The major finding of this study is that approximately 8–9 out of 10 young children with ASD in this cohort had high concentrations of one or more microbially-related metabolites. These results are consistent with over 40 studies that have measured concentrations of individual MDMs in ASD vs TD cohorts.”

Brilliant work, @PaulWhiteleyPhD and team!
Love the recommended subtype name. The 4 new dx for kids in the study also caught my attention. You all just made a huge impact for those kids and their families by identifying their conditions! Excellent! If you found 4/50, imagine the impact of a better worldwide standard of care and appropriate screening!

Great work! 🌟

[Paul Whiteley @PaulWhiteleyPhD]

Elevated microbially-derived metabolites in autism: a possible diagnostic screening test for a distinct ASD phenotype https://t.co/3oI2cUJBsX Some fantastic work by some fantastic researchers. Years in the making.

[MAKE A STAND 4 AUTISM @MakeAStandOrg]

“We hope there is a reduction in stigma and shame associated with the condition,” said Flynn, who herself is a parent of a child with autism. “Sometimes diagnostic hesitancy happens because parents feel like they're not good enough parents and they're being judged. But that's not the case because if we can detect it in urine, it's a biology-based condition. Hopefully that will prevent any hesitancy on parents' parts to seek treatment and seek it as early as possible.”

[Paul Whiteley @PaulWhiteleyPhD]

New urine test provides simple way to screen for autism in children https://t.co/77CDOGBWsy

[MAKE A STAND 4 AUTISM @MakeAStandOrg]

“It is important to note that individual microbial metabolites may exert divergent biological effects depending on the physiological context. For example, indole-3-propionic acid has been reported to enhance immune checkpoint blockade responsiveness in adult oncology settings. However, such findings do not preclude the possibility that excessive or dysregulated exposure during early neurodevelopment—especially in combination with other dysbiosis-associated metabolites—may have different functional consequences. The present study highlights abnormal concentration patterns of MDMs in ASD children vs. TD children, and acknowledges that some MDMs may be harmful and others may be helpful.”

[MAKE A STAND 4 AUTISM @MakeAStandOrg]

@PaulWhiteleyPhD Also…

“To illustrate the potential neurological impact of these metabolites, we draw a parallel to ethanol, a well-known yeast-derived neurotoxin, which is commonly consumed by humans to affect their neurological function [59].”

Cheers! 🇮🇹

[MAKE A STAND 4 AUTISM @MakeAStandOrg]

“The major finding of this study is that approximately 8–9 out of 10 young children with ASD in this cohort had high concentrations of one or more microbially-related metabolites. These results are consistent with over 40 studies that have measured concentrations of individual MDMs in ASD vs TD cohorts.”

Brilliant work, Paul and team!

I love the recommended subtype name. The 4 new dx for kids in the study also caught my attention. You all just made a huge impact for those kids and their families by identifying their conditions! Excellent! If you found 4/50, imagine the impact of a better worldwide standard of care and appropriate screening!

Great work! 🌟

[Laura Cellini @LauraCellini]

My heart breaks for this family. This is the 3rd wandering/drowning autism related death that I am aware of that has occurred since the @IACC_Autism passed a recommendation to @SecKennedy to utilize the existing MEP system with specific criteria for autism related elopement. May God bless and comfort these families. https://t.co/tYNHZYfgen

[MAKE A STAND 4 AUTISM @MakeAStandOrg]

Use of the word "social" can be such a disservice to those with autism - especially profound autism.

It immediately implies someone is resistant to, or incapable of, adhering to arbitrary social frameworks. The reality of what we see in profound autism runs so much deeper. We are talking about a near complete inability to CONNECT with the world around you.

CONNECTION is a vital component of life - even of survival.

SOCIABILITY is HOW we connect.

[Paul Whiteley @PaulWhiteleyPhD]

Social functioning in autism: a systematic review and meta-analysis https://t.co/PlJQKK3JWA Just in case anyone doubts that autism is at heart a (pervasive) social communication disorder (also accompanied by a substantial dose of enhanced vulnerability). Not the 'TikTok autism'..

[MAKE A STAND 4 AUTISM @MakeAStandOrg]

Source: https://t.co/F2GYfwZghI

[MAKE A STAND 4 AUTISM @MakeAStandOrg]

"For medicine to progress, we must expunge ourselves of dualist language and frameworks, broaden our approach, and redesign our systems of care."

[Nicholas Fabiano, MD @NTFabiano]

The artificial divide we have drawn between mental and physical health is the largest mistake in medicine.

Maintaining this divide creates stigma and worse care for all.

[Sylvia Fogel MD @FogelSylvia]

The tragedy and trauma of self-injury in autism are a daily reality for many individuals and families. We need to do a better job identifying and treating contributing medical conditions and pain, while ensuring individuals have access to a range of appropriate treatments and supports. My heart aches for individuals and families living this reality.

[Laura Cellini @LauraCellini]

@SecKennedy @HHSResponse 2 weeks ago, the IACC voted on a recommendation regarding cases like this one of wandering and elopement. We proposed utilizing the existing Missing and Endangered Persons Alert System to have specific search criteria when the individual has autism. Searching nearby bodies of water is paramount. We view this as an urgent safety measure and hope it is enacted. Prayers for this little guy’s family.
https://t.co/Hyn0iInJYB

[MAKE A STAND 4 AUTISM @MakeAStandOrg]

We are all equally accountable for our actions and our claims.

We are okay with that - even grateful for that.

Are you? @_TheTransmitter @DaisyYuhas

[Sylvia Fogel MD @FogelSylvia]

Still have not heard back regarding my request to @_TheTransmitter to validate their reported attempt to reach me for comment about @DaisyYuhas’s story. I’ve now sent two emails without response.

I appreciate the corrections and additions made to the article, but given the seriousness of some of the initial assertions and implications, I believe follow-up and clarification are only fair.

[MAKE A STAND 4 AUTISM @MakeAStandOrg]

Hundreds of thousands sacrificed on the altar of Pharma. Business as usual.

[Sylvia Fogel MD @FogelSylvia]

This 2019 congressional report about the opiod crisis and Purdue Pharma is a masterful analysis of the pharmaceutical industry playbook used to promote products and shape medical narratives.

Purdue followed a familiar strategy: enlist respected physicians, medical societies, academic experts, and public health authorities (including the WHO) to reassure clinicians and the public, minimize perceived harms, and promote widespread use—often on the basis of weak, selective, or incomplete evidence.

This was not simply a story about one company. It exposed structural incentives and influence mechanisms that extend far beyond opioids.

The uncomfortable reality is this was not an aberration. It reflects the ongoing degradation of large parts of medicine and public health under the influence of industry, financial incentives, institutional capture, and manufactured consensus.

Hundreds of thousands sacrificed on the alter of Pharma. Business as usual.
https://t.co/VsAFpVvaMk

[MAKE A STAND 4 AUTISM @MakeAStandOrg]

💗

[Secretary Kennedy @SecKennedy]

MAHA Moms are the beating heart of this movement. You take responsibility for your children’s health and make the choices that shape their future. You show what it means to put family first—and to Make Children Healthy Again. Your actions don’t stop at home—they’re shaping policy and driving better health across America.

Happy Mother’s Day.

[MAKE A STAND 4 AUTISM @MakeAStandOrg]

Whatever this is…CURE THIS!
GIVE ME BACK MY DAUGHTER!

We are not playing games or semantics or virtue signaling or scientific elitism ANYMORE.

Make this right.

[MAKE A STAND 4 AUTISM @MakeAStandOrg]

“I do not think it is scientifically appropriate to simply assume that biological events temporally associated with major developmental changes are necessarily irrelevant or that the same outcome would have occurred regardless.”

When THIS is the before and after of post-infectious regression…it matters much more.