In her vivid world, nothing is simple and everything appears pertinent. Even an average trip to the grocery store is a feat and cause for reflection. From being a dyslexic cheerleader with dyspraxia going the wrong direction, to bathroom stalking, to figuring out if she can wear that panty-free dress, Craft explores the profoundness of daily living through hilarious anecdotes and heart-warming childhood memories. Ten years in the making, Craft’s revealing memoir brings Asperger’s Syndrome into a spectrum of brilliant light—exposing the day-to-day interactions and complex inner workings of an autistic female from childhood to midlife.
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?
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." (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
<https://www.theguardian.com/us-news/2025/apr/22/rfk-jr-autism-nih>
Autistic people and experts voice alarm at RFK’s ‘terrible’ approach to condition
<https://www.theguardian.com/us-news/2025/apr/24/rfk-jr-autism-disability-services-cuts>
RFK Jr.'s autism study to amass medical records of many Americans
<https://www.cbsnews.com/news/rfk-jr-autism-study-medical-records/>
-- Michael
#autism #NIH #registry #PHI #privacy #medicalrecords #genetics #vaccines #HHS #RFK #aspergers @[email protected] @[email protected] @[email protected] @[email protected] @[email protected] @[email protected] @[email protected] @[email protected]
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.
"I was diagnosed with #Aspergers#syndrome, #OCD, and selective #mutism.
... ...
I think that in many ways, we #autistic are the normal ones, and the rest of the people are pretty strange, especially when it comes to the sustainability crisis, where everyone keeps saying that climate change is an existential threat and the most important issue of all and yet they just carry on like before."
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.
There's a real problem faced by "highly-capable" or "gifted" kids:
Things are easy for them, until they're not.
And when things get difficult, it's often because the kid coasted by on their IQ without developing the skills they'd need when things got more complex than they were able to brute-force with their brains.
I know this happened to me, and it's only as an adult that I learned more about why.
Autism is often co-morbid with executive function impairment and atypical sensory-processing.
Learning skills to help counter executive functioning issues and techniques to deal with over-stimulus when it comes to task completion can dramatically improve quality of life and burnout issues with tasks that suddenly seem to be too great to surmount.
Take this with some salt, I transitioned from psychology to computer science half-way through my college career.