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Anna Nicholson

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: change.org/p/tell-the-aclu-to-

Thanks to @yourautisticlife for drawing my attention to this

#ActuallyAutistic #AllAutistics #petition mast.yourautisticlife.com/@you

Change.orgSign the PetitionTell the ACLU to Fight Mandatory Autism Databases!
Public
Anna Nicholson

US state registries of Autistics

(CW: severely pathologising language)

Delaware: dhss.delaware.gov/dhss/dph/chc

Indiana: in.gov/health/gnbs/gnbs-progra

New Hampshire: dhhs.nh.gov/programs-services/

New Jersey: nj.gov/health/fhs/autism/publi

North Dakota: hhs.nd.gov/autism-spectrum-dis

Rhode Island: [health.ri.gov site down currently]

Utah: health.utah.gov/cshcn/programs

West Virginia: marshall.edu/atc/wvasd-registr

➡️ That ACLU petition again!! ➡️ change.org/p/tell-the-aclu-to-

dhss.delaware.gov Delaware Newborn Screening Program - Delaware Health and Social Services - State of Delaware Autism General Information
#ActuallyAutistic#AllAutistics
Public
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): nj.gov/health/fhs/autism/docum

Table 1 from the linked paper, headed ‘Autism registries: a review of eight states’, and showing data collected. Child’s name: all but NH and WV, which only collect the first initial of the child’s last name. Date of birth, race and ethnicity: all states. Place of birth: all but WV. Parent’s date of birth: IN, NJ, ND and RI. Date of diagnosis: all but DE and RI. Age of first symptoms: NJ and ND. Provider name: all but UT. Provider degree/specialty: NH, NJ, ND, WV. Link families to resources: IN, NJ. Mandated age range: all ages in IN, NH, ND and WV; by birth cohort in DE; a combination of those in UT; 0 to 21 in NJ; and 0 to 5 in RI. Collection method: provider submitted reports in all but DE and UT, which collect by active record review. A footnote for IN and RI states, ‘Some elements (e.g., demographics) are obtained by matching with other database.’
#ActuallyAutistic#AllAutistics#registry
Public
Dr. Amy, Psy.D.

@transponderings Thank you for this chart!! Is it ok to use in a blog post? I haven’t seen it laid out this clearly before

Dr. Amy, Psy.D.

@transponderings oh sorry I missed that part! Thank you for sharing it and for the source

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