SR 35, Caballero

[Henny Kupferstein]

Dear Elisa, 

I was referred to you about SR 35 that promotes awareness for a rare genetic disorder, tuberous sclerosis complex (TSC). As an autistic scientist and published autism researcher, I am appealing to you to meet with me. This bill is now law, but is based on fundamentally fake news. 

TSC does not have anything to do with autism. We are requesting that amendments be made in the next session to remove "and autism" in its two appearances, corrected for the record (suggestions attached). We must work together to bring neurodiversity into legislation. 

I welcome the opportunity to discuss this. 

• “Over the years, it has become recognized that between one-fourth and one-half of all children with tuberous sclerosis complex (TSC) develop ASD.”

• Autism is a lifelong developmental condition, and not a consequence of a genetic anomaly. Autism cannot be developed, but can be diagnosed at any time during the lifespan. 

• “The rate of ASD in the general population is substantially lower (around 1% of the total population), so there is clearly a very substantial increase in the rate of ASD in children with TSC.”

• Around 1% is so substantially low, that there is in fact no clear evidence to claim any significant prevalence. We do know that adults with ASD are approximately 2.6 times more likely to be diagnosed with early-onset Alzheimer's disease and related dementias compared to the general population, a representation of significantly correlating findings in the scientific method. 

• “Although this is a relatively low rate it is still clearly much higher than the rate of TSC in the general population, which is somewhere between 1 in 6,000 individuals.” 

• The Bill language claims the prevalence is “6,500 Californians… diagnosed with tuberous sclerosis complex (TSC).” By contrast, there are 1 million autistics in the State (myself included), which correlates with the 1% projected prevalence. The prevalence is so minimal that it cannot scientifically be proven as fact to be of relevance to people with autism. 

• “Either way, the overlap between ASD and TSC is clear.” 

• There is no proven overlap, and the global estimate of TSC Autistics is somewhere between 1 in 6,000 individuals with TSC, based on research estimates that 25% to 60% of people with TSC will have ASD, compared to 1% to 2% of the general population. Autism already is at an alltime high prevalence in the general population, such that it makes the 1 in 6000 insignificant to the 1 in 42 of autism prevalence. Lastly, . 

• “Additionally, there is a very clear link between ASD and cognitive impairment in TSC.”

This is baseless, not rooted in data informed evidence, and is contributing to fear and panic about autism spectrum disorders. Not a single one of the major or minor features for diagnosing TSC cross over to the autism criterion, while autism significantly correlated with Alzheimers.

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I am teaching autistics how to run for public office without fundraising!  Save a penny, VOTEHENNY.com

Sincerely,

Henny Kupferstein, Ph.D. 
Hennyk.com  &  Doogri Institute
Qualified expert on informed consent for nonspeaking, ASL, and AAC users ∞

📌 Author of the AGP Model AbleGrounded.com

AAC lessons | piano lessons |Peer Mentorship | College Readiness | Person Centered Planning 

   

[Stanley Krippner]

Good luck. \This is very well stated.

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