If you are Autistic, living in one of the following US states, and you go to a doctor, you are liable to be put on a state register and may be involved in medical research without your consent
• Delaware
• Indiana
• New Hampshire
• New Jersey
• North Dakota
• Rhode Island
• Utah
• West Virginia
Petition the American Civil Liberties Union to challenge the laws that require Autistic people to be registered: https://www.change.org/p/tell-the-aclu-to-fight-mandatory-autism-databases
Thanks to @yourautisticlife for drawing my attention to this
#ActuallyAutistic #AllAutistics #petition https://mast.yourautisticlife.com/@yourautisticlife/110984149497536138
reshared this
Dr. Amy, Psy.D.
•Anna Nicholson
•@dramypsyd Happy to share it, though sad it’s necessary
I’m surprised it hasn’t received more support yet, as this seems to be a significant human rights violation
Dr. Amy, Psy.D.
•Anna Nicholson
•US state registries of Autistics
(CW: severely pathologising language)
Delaware: https://dhss.delaware.gov/dhss/dph/chca/dphnsp7.html
Indiana: https://www.in.gov/health/gnbs/gnbs-programs/birth-defect-and-nbs-condition-info/ibdpr-indiana-birth-defects-and-problems-registry/
New Hampshire: https://www.dhhs.nh.gov/programs-services/disability-care/developmental-services/autism-spectrum-registry
New Jersey: https://www.nj.gov/health/fhs/autism/public/registry/
North Dakota: https://www.hhs.nd.gov/autism-spectrum-disorder-asd-database
Rhode Island: [health.ri.gov site down currently]
Utah: https://health.utah.gov/cshcn/programs/autism.html
West Virginia: https://www.marshall.edu/atc/wvasd-registry/
➡️ That ACLU petition again!! ➡️ https://www.change.org/p/tell-the-aclu-to-fight-mandatory-autism-databases
#ActuallyAutistic #AllAutistics
Autism Spectrum Registry
New Hampshire Department of Health and Human ServicesHugs4friends ♾🇺🇦 🇵🇸😷
•Anna Nicholson
•The research implications of US state autism registries (as mentioned in @dramypsyd’s petition) are hinted at in some of these, e.g.
‘to inform the planning of service delivery to children with autism and their families and to facilitate autism research’ (Delaware)
‘To identify factors that might be associated with birth defects [including being Autistic!]’ (Indiana)
‘they are instrumental in establishing significant risk factors, potential causal factors, and cellular-level research results’ (New Jersey)
The third is from this linked paper (PDF), which also helpfully discusses the positions of all eight states, including a comparison table (attached): https://www.nj.gov/health/fhs/autism/documents/2016%20overview%20of%20States%20Autism%20Registries%20Brief.pdf
#ActuallyAutistic #AllAutistics #registry #MandatedReporting
Dr. Amy, Psy.D.
•Anna Nicholson
•Dr. Amy, Psy.D.
•Anna Nicholson
•Still having trouble with Rhode Island’s website, but this Spectrum article from 2011 explains what RI intended to do with its registry: https://www.spectrumnews.org/news/rhode-island-plans-statewide-registry-for-autism-research/
They wanted to register every Autistic person in the state – ‘an estimated 2,500 children from 1st grade through high school, as well as preschoolers in early intervention programs and adults with autism [sic]’
Despite mentioning adults here, there’s only one other mention in the article, when one of there researchers refers to ‘the support and services her kid needs’, the kid being, in the article’s words, her ‘adult son with autism [sic]’
They also intended to use ADOS, a very child-oriented diagnostic tool – it’s the one that uses the picture book ‘Tuesday’
‘Less than half a million dollars would enable the group to build a registry database and hire a three-person team to begin recruiting participants’, Daniel Dickstein of Brown University is reported as having said
#ActuallyAutistic #AllAutistics #registry
Rhode Island plans statewide registry for autism research
Sarah DeWeerdt (Spectrum | Autism Research News)Merry TC-hristmas 🎄❤
•Jimmy Havok
•Your Autistic Life FR/EN/ES
•I saw that in my notifications this morning, and thought "What did I do now???? I don't remember talking about any petition."
Then I followed the link to my post, and saw the relationship. I'm glad that my general observation sent you down that path. 👍
Rhombus Ticks
•ts 🚉
•Princeoflonelymt
•Superfreq
•Gen X-Wing
•How can this be legal? I have to sign plenty of documents before being allowed in a study (been in multiple ones) and if anything they are very careful and any change means a new bunch of papers to sign.
I can’t see this being used for good, feels very creepy and right wing.
Ian Molton likes this.
Ian Molton
I don't think the people with money care about legal much.
Illegal just means "legal if you're rich".
Gen X-Wing
•@spyro HIPAA isn’t terribly easy to break. This feels like christo fascists in government to me. Amazon, Alphabet, Meta, etc already knows this kind of stuff, so the rich people and corporations already has this.
Making the lists reeks of ideologies.
Ian Molton likes this.