MAKE A STAND 4 AUTISM

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MAKE A STAND 4 AUTISM

MAKE A STAND 4 AUTISM

@MakeAStandOrg

Unlocking potential through advocacy, research & education.

Katılım Haziran 2009
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MAKE A STAND 4 AUTISM
MAKE A STAND 4 AUTISM@MakeAStandOrg·
You know what is a human right? Communication
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Laura Cellini
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. wdrb.com/news/4-year-ol…
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MAKE A STAND 4 AUTISM
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 nature.com/articles/s4156… 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'..

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Sylvia Fogel MD
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.
Paul Whiteley@PaulWhiteleyPhD

Giant chronic subgaleal hematoma secondary to repetitive self-injurious head-banging in severe autism: A case report pmc.ncbi.nlm.nih.gov/articles/PMC13… The images included in this paper are not for the faint-hearted but they reiterate the very real damage that self-injury can cause.

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Laura Cellini
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. people.com/boy-with-autis…
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MAKE A STAND 4 AUTISM
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.

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MAKE A STAND 4 AUTISM
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.
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Sylvia Fogel MD
Sylvia Fogel MD@FogelSylvia·
I agree that autism is often innate and strongly heritable. But high heritability does not mean immutability, nor does it exclude environmental modulation, particularly when environmental factors may be widespread, shared, or interacting with biology in consistent ways. I also agree with much of what you are arguing regarding the potential importance of germline and developmental programming effects. But could you agree that even with a pre-existing heritable vulnerability, that environmental, metabolic, immune, or toxicant-related exposures could still influence developmental trajectory, severity, regression, or co-occurring medical burden in at least some individuals? There is substantial evidence that core cellular processes — including mitochondrial function, redox balance, immune signaling, oxidative stress pathways, and metabolic signaling — directly influence neurodevelopment, including synaptic development, neuronal connectivity, pruning, plasticity, network regulation, and broader cytoarchitecture of the developing brain. These are not peripheral issues; they are fundamental developmental mechanisms. One of the central questions in autism science is how extremely diverse risk factors — hundreds of genes, de novo mutations, maternal immune activation, prematurity, valproate exposure, mitochondrial dysfunction, inflammatory pathways, and other metabolic or environmental factors — converge onto overlapping developmental phenotypes. Clinical experience with many autism families has also reinforced my interest in neurodevelopmental regression and developmental trajectory. Regression does not establish causation. But 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. To me, this is about understanding how genetic vulnerability, developmental biology, metabolism, immune signaling, and environmental factors interact across development. And on a final note, I do not appreciate the suggestion that my views ignore the last 20 years of autism research or that I am uninterested in scientific input from others. Quite the opposite — I actively seek out perspectives from researchers, clinicians, advocates, and families with a wide range of viewpoints and expertise. I am also proud of the work accomplished at the first IACC meeting. The Committee advanced thoughtful, evidence-informed, common-sense recommendations focused on issues like safety, medical care, and support for those with profound autism — recommendations that passed with strong public and federal support. That is part of why the intensity of the public attacks and coordinated efforts to discredit the new IACC have been disappointing and, frankly, make genuine collaboration more challenging. I still hope we can find ways to engage respectfully and constructively around both the science and the needs of individuals and families.
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Sylvia Fogel MD
Sylvia Fogel MD@FogelSylvia·
@JillEscher , I so appreciate you. Perhaps we can serve as a model for how people can find common ground while still respectfully disagreeing. You and I are aligned on a number of important issues: the rising prevalence of autism, the significant support needs faced by those with profound autism, the importance of the prenatal environment, and the need for serious scientific inquiry. I’m also intrigued by your hypothesis regarding germline mutations, particularly as it relates to the growing recognition of the role of de novo mutations in autism. At the same time, we differ on a number of issues, including the potential importance of postnatal environmental exposures and illness, especially in relation to neurodevelopmental regression, co-occurring medical conditions, and overall severity. We also disagree about communication options for nonspeakers and the role of motor differences in that population, though I also want more research. At the end of the day, the autism community needs to focus on being on the SAME TEAM, and the relentless attacks by the same three or four people need to stop. We should focus on common ground and on the shared goal of helping children and families — not only our own children, but the many children and families struggling now and those still to come as prevalence continues to rise.
Jill Escher@JillEscher

Both @HelenTager and David Mandell have a history of flippant and group-thinky denialism of the staggering increase in autism and thus helped fuel the complacency that plagued @IACC_Autism. (Data below is limited to autism cases with substantial developmental disability — wake up people.) Halladay on the other hand has a sincere concern but unlike some current IACC members, rightly rejects vaccines as an explainer. @_TheTransmitter has a de facto editorial policy of denying the increase in autism. We all pay a whopping price for its cherished luxury beliefs.

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Sylvia Fogel MD
Sylvia Fogel MD@FogelSylvia·
To the Editors of the Transmitter: I appreciate and thank you for making updates to your story to reflect my comments and the corrections I provided in an email to editors@thetransmitter.org on May 7, 2026, at 7:37 AM ET (which I also subsequently posted on X). However, I take issue with The Transmitter’s continued assertion that someone attempted to contact me for comment by email on May 5 at 9:10 AM CT. I have no record of such an email in my inbox. I would appreciate a copy of that email so I can confirm whether it was sent to the correct address. I acknowledge there is a small possibility that I may have accidentally deleted such an email, although that would be unusual for me. If the email address used was incorrect, or if no email can be located, I would request that the story be updated to remove the assertion that I was contacted for comment. Additionally, the story states that the updates were made in response to comments I posted on X, without mentioning that I also contacted the editors directly at the email address above. While this is a relatively minor point, the omission has the effect of suggesting that I did not make a good-faith effort to engage directly with editorial staff. You have my email address, and I look forward to continued productive dialogue to resolve the remaining issues and to a copy of your email attempt to reach me for comment. This post is a modified version of an email sent to The Transmitter Editors at 2:57pm ET on 5/8/26.
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Ann Bauer Sc.D.
Ann Bauer Sc.D.@AnnBauerZ·
Check out the #Autism Innovation Coalition Leading scientists, clinicians, & policy advocates working together to uncover the biological mechanisms that drive autism-redefining understanding & care through systems biology, precision medicine & innovation autisminnovationcoalition.com
Ann Bauer Sc.D. tweet media
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Sylvia Fogel MD
Sylvia Fogel MD@FogelSylvia·
A systems biology framework—one that considers cellular metabolism, including signaling pathways, redox balance, and mitochondrial function, alongside the dynamic interplay among reciprocally regulating body systems such as the immune system—is crucial to advancing autism research. As researcher Robert K. Naviaux and others have emphasized, diverse genetic and environmental factors may converge on disruptions in cellular metabolism, resulting in systems-level dysfunction across the body. Historically, autism research has focused primarily on the brain. However, the high rates of co-occurring medical conditions, together with multiple converging lines of evidence, increasingly suggest that for at least some cohorts, autism may involve whole-body pathophysiology rather than isolated neurodevelopmental differences alone. Expanding research efforts to include underlying systems biology therefore represents an important complement to existing lines of investigation. This paper is a tour de force and underscores that perspective. pubmed.ncbi.nlm.nih.gov/41242673/ Visit the Autism Innovation Coalition for more of these perspectives. autisminnovationcoalition.com
Profound Autism Alliance@ProfoundAutism

“What’s emerging from this and other research labs is not just a shift in thinking, but the early outlines of new treatments.” washingtonpost.com/health/2026/04…

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MAKE A STAND 4 AUTISM
MAKE A STAND 4 AUTISM@MakeAStandOrg·
@PaulWhiteleyPhD I am 100% open to the idea of prenatal priming of some kind or even a genetic vulnerability that has yet to be discovered…but the post-infectious regression is a matter of fact and cannot be denied. This is the right way.
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Paul Whiteley
Paul Whiteley@PaulWhiteleyPhD·
Toward an immunological classification of autism spectrum disorder: A PRISMA-ScR–compliant scoping review sciencedirect.com/science/articl… Watch this space for something similar soon...
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MAKE A STAND 4 AUTISM
MAKE A STAND 4 AUTISM@MakeAStandOrg·
Wow! HUGE!! “Autism Spectrum Disorder (ASD) is a heterogeneous neurodevelopmental condition increasingly linked to disturbances in immune signaling and neuroimmune cross-talk. This PRISMA-ScR–guided scoping review synthesizes contemporary evidence to propose a structured immunological classification of ASD comprising six immune-related subtypes: immune overactivation, immune deficiency, autoimmunity-linked ASD, gut–immune axis dysregulation, post-infectious or immune-triggered onset patterns, and maternal immune activation.”
Paul Whiteley@PaulWhiteleyPhD

Toward an immunological classification of autism spectrum disorder: A PRISMA-ScR–compliant scoping review sciencedirect.com/science/articl… Watch this space for something similar soon...

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