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#Aspergers

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Email2Toot Psychology Bot

Email2Toot Robot. Please see entry below for author.

RFK/NIH Autism research

A Clinicians Exchange member asked:

"Hi all: Has anyone else been following this? I’m trying to sort through the ethics and legalities, but lack some knowledge about how this data might have been gathered in the past. Any thoughts?

npr.org/2025/04/23/nx-s1-53726? "

To which I responded:

Yes, I have been following this.

I can't address your question about how data was gathered in the past. That said, I believe studies generally involve either informed consent or entirely anonymized large data sets. (See also Autism expert quotes in 2nd Guardian article below.)

This study (which is supposed to find the cause of Autism by September!) is pulling from "several different federal and commercial databases" and "NIH... [is] also discussing a potential expansion of the agency’s access to data from the Centers for Medicare and Medicaid Services... The study also plans to link medication records from pharmacies, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers and data from smartwatches and fitness trackers." (Quoting from first Guardian article below).

So I think its fair to say there's little to no informed consent here, not counting the required 50 page EULAs people have to agree to for access to healthcare or to use their fitness trackers!

Going beyond just research, they are also keeping a registry of American with Autism! [So, no, not anonymous.]

"With this information being included in the database, the NIH is also reportedly crafting a new registry to track those with autism, per [CBS News.](cbsnews.com/news/rfk-jr-autism)" (Again 1st Guardian article below.)

This goes beyond Autism:

"Bhattacharya said that compiling this data could also potentially give health agencies a window into “real-time health monitoring” on Americans for studying other health problems beyond autism."

"'What we’re proposing is a transformative real-world data initiative, which aims to provide a robust and secure computational data platform for chronic disease and autism research,' he said." (1st Guardian Article below.)

The CBS News article below is worth viewing to see the graphic of just how comprehensive the NIH database will be and where all it is drawing from.

The 2nd Guardian article below should be read in its entirety (rather than me quoting 90% of it) as it goes into how its already known that 95% of Autism is related to genetics, how environmental factors are presupposed as a cause of Autism by Kennedy (including the vaccine for measles), and how the head of the study was found to be practicing medicine without a license in Maryland. Also how huge swaths of funding for existing Autism programs and the disabled are simultaneously being cut even as this study is launched to supposedly help those with Autism.

~~~

RFK Jr’s autism study collecting Americans’ private medical records
theguardian.com/us-news/2025/a

Autistic people and experts voice alarm at RFK’s ‘terrible’ approach to condition
theguardian.com/us-news/2025/a

RFK Jr.'s autism study to amass medical records of many Americans
cbsnews.com/news/rfk-jr-autism

-- Michael

#autism #NIH #registry #PHI #privacy #medicalrecords #genetics #vaccines #HHS #RFK #aspergers @autism @autisticadvocacy @psychology @psychiatry @psychtherapists @socialwork @mentalhealth @psychotherapist

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Silver Arrows

A bit of personal history. Apparently my doctor told my mum around 1999 that I might have #Aspergers, but she never told me.

This article in the May 2002 issue of #PCFormat was where I first learned about it. I could relate to a lot of this, and wondered, could this be why I'm so weird? But then I thought, it's #autism. I'm not #autistic.

Because unfortunately my first introduction to autism was the awful #BabysittersClub book about Susan.

@actuallyautistic @neurodiversity

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DC Books to Prisons

Judge Indira Talwani, who sentenced Jack Teixeira to 15 years in prison for leaking classified information, took the unusual step of recommending that the Bureau of Prisons make eight specific books available to Teixeira in prison. These books, including "Asperger's Syndrome and Jail: A survival guide" by Will Attwood, are intended to address Teixeira's autism and ADHD.

yahoo.com/news/judge-requests-

Yahoo News · Did you know Dighton Pentagon leaker has autism? Surprising way judge addressed thatBy Emma Rindlisbacher, The Taunton Daily Gazette
#autism#autistic#BureauOfPrisons
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Steve B

I need a #therapist!

My daughter is 26 and on the #autism #spectrum. Diagnosed years ago as #Aspergers. She fine, successful, masters degree, good job etc. but her procrastinations is starting to seriously impact her life. She has other issues, as we all do, but this is my main concern.

She lives/works in Belfast, drives, and I think would benefit from some sessions with a therapist.

Can anyone recommend a suitable therapist, either in person or online?

Please share.

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Nazo

So this is probably a dumb question and I probably already know the answer to it (and even if I'm wrong it may not matter since I may not be able to do the things that I have to do), but is there any way that someone without insurance might somehow be able to get a medical diagnosis for Asperger's Syndrome in America (and a not very nice state at that)? Just thought I'd ask anyway.

#Aspergers#Autism#Healthcare
Replied in thread
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MugsysRapSheet 🔩🐑🐘

@mike @mmasnick
People forget Musk has #Aspergers. He even praised #SNL when they invited "their first person with Asperger's to host the show."

People with Asperger's (a form of #autism) have difficulty understanding normal human interaction. They feel the need to boil every social situation down to a binary equation, but fail to apply that same logic outside of social interaction.

Someone with Asperger's has no business running a "Social Media" website (particularly one as big as Twitter.)

Replied in thread
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🗦 𝙴𝚞𝚋𝚒𝚎 𝙳𝚛𝚎𝚠 🗧（🦣)

@JeremyMallin @actuallyautistic

I self DX'ed as #Aspergers, if that counts, sometime in the 1980's during my 20's; never officially DX'ed with #autism because I was afraid of consequences (different times).

#ASD gallops in my family, both sides. All the members of my nuclear family, and half of my second degree relatives.

Knowing this provides insight.

Considering seeking official DX.

Thoughts?

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hugo.

This week's book review on the blog presents a slim but very informative title: "Neurodiversity Affirming Glossary of Key Vocabulary" by Helen Edgar, the founder of Autistic Realms.

As a teacher, I especially recommend it to educators, but everyone can benefit from it: from people wondering if they might be neurodivergent to experts working with people on the spectrum.

grammaticus.blog/2023/06/12/bo

The image shows the "infinity rainbow", a symbol representing the inclusive character of the neurodivergent community.
#asd#autism#aspergers
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