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❄️ ASAN December Update ❄️

ASAN December Newsletter

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Dear friends,

2022 is nearly here! Thank you for spending 2021 with us, fighting for a better world for the whole disability community. During the course of this year, you’ve seen how your continued support keeps our organization going. We’ve sent you updates about our events and campaigns, urgent action alerts, new resources, and plenty of information on how to join our fight for disability rights. We have big plans to keep up the fight in the coming year and beyond.

Unfortunately, some of our most important fights this year won’t end on a high note. ASAN is outraged at the DC Circuit’s refusal to reconsider a court ruling that allows the Judge Rotenberg Center to continue using electric shocks on disabled people. ASAN calls on the FDA to do whatever it takes to reinstate a ban by immediately reintroducing a new rule that would address the court’s concerns while effectively banning these devices. Our community has fought long and hard to end the Judge Rotenberg Center’s torture of disabled people. ASAN will continue to collaborate with state and federal policymakers, including the FDA, to end all forms of abuse against disabled people. We will not rest until no disabled person is subjected to torture in the name of “treatment.”

ASAN also responded to the Lancet Commission’s recommendation to establish “profound autism” as a classification. Self-advocates with intellectual disabilities and AAC users have long spoken out against the harm caused by functioning labels like “severe autism” or “low-functioning” autism; this new proposed term is no different. Instead of rehashing old, harmful arguments about functioning labels, we should focus on improving the services available to all autistic people — which is what the majority of the Lancet Commission report is actually about.

We’re still fighting for the inclusion of the largest federal investment in home- and community-based services (HCBS) in the Build Back Better Act. With so much at stake for our community, we’re not giving up on this desperately needed bill. There is still a way forward, but your Senators need to hear from you! Give them a call today.

This month, ASAN also released a statement regarding the updated autism diagnosis numbers. ASAN is not surprised to see the diagnosis rate increase. We believe this increase reflects better recognition and diagnosis of autism across the U.S. We expect that diagnosis rates will continue to rise as we work to address diagnostic disparities and improve access to diagnosis and support. The results of this report also make clear the need for improved study of rates of autism diagnosis in adults. While improvements in early diagnosis are important, substantial disparities remain, especially for autistic people of color.

December also brought new and exciting developments. We released our final toolkit of the year, “For Whose Benefit?” about autistic peoples’ perspectives on the ethics and purpose of autism interventions. It explains the ethical problems at the heart of the most popular autism intervention, applied behavioral analysis (ABA), as well as the lack of evidence to support ABA. “For Whose Benefit?” gives initial ethical guidance on what’s helpful and harmful in autism services and research in three formats: an academic version, an Easy Read version, and a Plain Language version. You can find them all here.

Also new this month is an addition to our accessible COVID-19 materials! COVID-19 keeps changing, but one thing that remains the same is the need for accessible information about what we can do to keep safe. There are now COVID-19 variants, or different kinds of the COVID-19 virus, some of which can spread more easily than the original virus. That’s why we have released this video and fact sheet in English and Spanish about the COVID-19 Delta Variant and other variants. 

Help ASAN get ready for 2022 by taking our annual survey! We’re excited to hear from you about what issues matter to you and what you’d like to see from us.

While we’re getting ready to ring in 2022, there’s still time to support ASAN through your end-of-year giving. When you pledge your support, you’re empowering disabled people to harness our power and be a part of the ongoing fight for our rights. Thank you for making our work possible!

With warm wishes for the new year,

The team at ASAN

Our policy team had a busy month to wrap up the year! Here’s an update of what we have going on behind the scenes:

  • In case you missed it: we hosted a webinar about medical discrimination during the COVID-19 pandemic! You can check it out here.
  • We signed onto a letter asking the White House and Congress to nominate people with disabilities for the judiciary. To date, there has not been a single nominee identified as a person with a disability. Representation in the highest courts is crucial!
  • We also signed onto a letter opposing the EAGLES Act of 2021. The EAGLES act proposes a threat assessment system in schools, which criminalizes children, further harms marginalized communities, and interferes with proven and evidence-based efforts to build positive relationships in schools and climates conducive to learning and child wellbeing. 
  • Our policy analyst Greg Robinson was elected co-chair of the Consortium for Citizens with Disabilities (CCD) Housing Taskforce! Greg joined ASAN after working in community program development around housing and community health for underserved communities, so this is an exciting opportunity to help set the agenda for CCD’s housing policy for the next year.

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pen on paperFunctioning Labels Harm Autistic People pile of masks next to the words "get your covid vaccine"Delta COVID-19 Variant Fact Sheet
a person editing a documentStatement on DC Circuit’s Denial of Rehearing in JRC Case a line of books stacked togetherFor Whose Benefit?: Evidence, Ethics, and Effectiveness of Autism Interventions
a person writing in a notebookTake ASAN’s 2021 Community Survey! a microphoneStatement on Updated Autism Diagnosis Numbers

 

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