Autism Cares Act 2024 Reauthorization

Key Highlights of the Autism CARES Act of 2024:

https://www.congress.gov/bill/118th-congress/senate-bill/4762/text

Reauthorization and Amendments:

• The bill reauthorizes programs and research related to autism under the Public Health Service Act until 2029.
• It includes amendments to improve the language and scope of existing provisions, such as changing "culturally competent" to "culturally and linguistically appropriate."

Developmental Disabilities Surveillance and Research Program:

• Extends the program's authorization to 2029.
• Updates terminology to be more inclusive and accurate.

Autism Education, Early Detection, and Intervention:

• Emphasizes culturally and linguistically appropriate services.
• Expands the scope to include both screening and diagnostic services.
• Promotes research on evidence-based practices and interventions.
• Requires a report on the need for developmental-behavioral pediatricians and the feasibility of expanding training programs.

Interagency Autism Coordinating Committee:

• Requires annual summaries and biennial updates on activities.
• Extends the committee's authorization to 2029.

Reports to Congress:

• Updates the timeline for required reports to 2024.
• Adds a requirement for a report on young adults with autism transitioning to adulthood.

National Institutes of Health (NIH) Research:

• Expands research areas to include psychiatry, psychology, gerontology, and other relevant fields.
• Requires the NIH Director to consider the various needs of individuals with autism, including co-occurring conditions.
• Mandates an annual budget estimate for autism research initiatives.

Technical Assistance for Communication Tools:

• Allows the Secretary of Health and Human Services to provide training and technical assistance on using federal funds for communication tools for individuals with autism.
• Requires an annual report on the technical assistance provided and advancements in communication tools.

Areas of Funding Priority:

• Developmental Disabilities Surveillance and Research: $28,100,000 annually for fiscal years 2025 through 2029.
• Autism Education, Early Detection, and Intervention: $56,344,000 annually for fiscal years 2025 through 2029.
• Interagency Autism Coordinating Committee and Related Activities: $306,000,000 annually for fiscal years 2025 through 2029.

These funding priorities aim to support comprehensive research, early detection, intervention, and coordination of services for individuals with autism spectrum disorder

The false ideal of independence

https://time.com/author/hari-srinivasan/

Essential piece by@harisri108 about autism and loneliness. By making "independence" the platonic ideal for all people, it can wind up breeding the type of loneliness that can harm #ActuallyAutistic people. via
@time

https://time.com/author/hari-srinivasan/

 

 

WITH MORE THAN 275 ATTENDEES FROM 12 COUNTRIES, THE PRESENTATION WAS AMONG THE HIGHEST ATTENDED IN THE 10-YEAR HISTORY OF THE DUKE AUTISM SEMINAR SERIES.

https://autismcenter.duke.edu/news/hari-srinivasan-delivers-2024-autism-acceptance-month-keynote-presentation

                              


On April 3, 2024, Hari Srinivasan presented the keynote address in the Duke Center for Autism and Brain Development's 2023-24 Autism Seminar Series, in recognition of Autism Acceptance Month.

A self-advocate, Srinivasan is a PhD student in neuroscience at Vanderbilt University, an alumnus of the University of California, Berkeley, a Paul & Daisy Soros Fellow, a NISE fellow at the Frist Center for Autism & Innovation at Vanderbilt University, and a public member of the Interagency Autism Coordinating Committee. He is a member of the Duke ACE Advisory Committee.

In his presentation, "Redefine the Table," Srinivasan illuminated the critical need for autistic individuals not just to sit at the table where autism is discussed, but to fundamentally redefine the table itself. He invited participants to consider a shift in perspective from binary views of autism to a more integrated approach that recognizes the complex, multifaceted experiences of autistic individuals.

Through his personal narrative and professional insights, Srinivasan underscored the importance of redefining the conversation around autism and disability to foster true belonging, inclusivity, and meaningful support across the lifespan. This redefinition calls for embracing multiple aspects of disability.

He advocates for both strengths-based opportunities as well as challenge-based solutions, acknowledging the diverse needs and potential of autistics across the spectrum. His talk challenged the audience to reconsider their perspectives around disability to achieve equity in social, medical, and research spaces.


WITH MORE THAN 275 ATTENDEES FROM 12 COUNTRIES, THE PRESENTATION WAS AMONG THE HIGHEST ATTENDED IN THE 10-YEAR HISTORY OF THE DUKE AUTISM SEMINAR SERIES.

A new angle

It was a thought provoking read about an angle that I hadn’t thought of. It is also beautifully written. 

https://time.com/6551520/loneliness-autism-essay/

The Pervasive Loneliness of Autism

 "It was a thought provoking read about an angle that I hadn’t thought of. It is also beautifully written."

https://time.com/6551520/loneliness-autism-essay/

Keynote at Duke ACE

Thank you for such a powerful presentation, Hari! As a mother of an autistic child, I found your insights deeply resonant. I'm grateful for the opportunity to learn from it. 

 

Processing loss and grief is even more intense for autistics.

Another excellent and deep article from Hari Srinivasan about how loneliness, lack of support, disruption in schedules and being the child of immigrants, can make processing loss and grief even more intense for autistic people.

https://www.psychologytoday.com/intl/blog/giving-voice/202402/the-spectrum-of-loss-grief-through-the-autistic-lens

 

Benefits of Solutions

https://time.com/6299599/autism-research-limited-essay/

 Media Mention by India Autism Center Nayi Disha

 

Public Voices Fellowship.

 

For those on the spectrum the range of mourning is even wider and complex

 https://www.psychologytoday.com/us/blog/giving-voice/202402/the-spectrum-of-loss-grief-through-the-autistic-lens

Hari, This is a VERY important piece. When our Dad died in 2017 (he was an amazing autism advocate), both my brothers on the spectrum dealt with his death very differently, and yes of course, they are very different from each other. Brother 1, who has profound IDD, had a very delayed mourning. He may have thought his father was going to come back. Finally a year+ after Dad's death, we had an additional memorial. This one reality hit him. He stopped eating, drinking, tons of crying ... it took around 6 weeks for the extreme mourning issues for him to subside. Brother 2 never once wanted to be seen shedding a tear. That had and has been very tough for all of the remaining siblings (there are six of us) and my mother to watch. So yeah, everyone of us handles grief differently. For those on the spectrum the range of mourning is even wider and complex. Thank you for sharing your wise insight and I am so sorry for your loss of both of your grandparents.

Societal Ideal of Independence

Independence = overrated! So many great points @TIME piece @HariSri108 

'The societal ideal of independent living for [#autistic people] translates to living apart from...family + being surrounded instead by a series of paid support staff' 

https://time.com/6551520/loneliness-autism-essay/

A nuanced understanding

“Addressing the loneliness epidemic in the disabled community necessitates a nuanced understanding of independence because in actuality, all humans live in a cycle of dependency.” by autistic academic @HariSri108 - Hari Srinivasan.

 

Leveraging AI

https://time.com/6299599/autism-research-limited-essay/

 Media Mention by India Autism Center Nayi Disha

 

A Dual Approach to Autism

 

I signed up today for a Twitter (X?) account for the first time because I read the Newsweek article "A Dual Approach for Autism." I'm married to an autistic man and my grandson is also autistic, and my hopes and wants for/from them are vastly different. I loved your perspective.


And here is the article https://www.newsweek.com/dual-approach-autism-opinion-1818062

Exclusionary Criteria

https://time.com/6299599/autism-research-limited-essay/

 Media Mention by India Autism Center Nayi Disha

 

Fortune Article

 

https://fortune.com/2023/07/27/flexible-work-critics-using-same-arguments-were-used-oppose-disabled-ramps-closed-captioning-equity-access-never-optional-remote-work-careers-hari-srinivasan/

Replying to @HariSri108 @FortuneMagazine and 7 others
Such a thought-provoking piece Hari. Thanks for sharing!

I got mentioned in a Time mag article and more

 

TIME Magazine (Sarah Kurchak), February 25, 2021

https://time.com/5942094/sia-music-disability-representation/?fbclid=IwAR2_vIUk9XFVF2Kt2AKlCUQ3KSIpIiPWZx-uKipLGWq18SOtOZksuIWVVYA

• ("In the interest of fairness, I did watch Music for the sake of this piece. I won’t evaluate it as representation, as I believe that non-speaking autistic people should be leading that conversation. (For more on the topic, I recommend starting with the short film produced by CommunicationFIRST and the essays by Mickayla and Hari Srinivasan.)")

The Independent (Helen Brown), February 25, 2021

https://www.independent.co.uk/arts-entertainment/films/features/sia-music-film-autism-maddie-ziegler-b1806871.html?fbclid=IwAR0ieF3bTTzDKilAQvAM254Hlzyg2qvIW_7x0tVV7rORboP7VJal1rQNtCI#comments-area

•  As the film’s final contributor, Hari Srinivasan, concludes: 'If you have a voice, you can use it to help bring dignity back for the members of the more marginalized autistics.' He says that we need to change the narrative around non-speaking autistics and improve visibility in society – and pop culture – so that more actors who might better fill a role like Music in Sia’s film can come to the fore and be seen, and I agree. It’s only those tired old stereotypes that deserve to be crushed.")

Canadian Broadcasting Corporation (Gloria Macarenko), February 18, 2021

• (non-transcripted radio clip) ("One of the big organizations, I believe they are called CommunicationFIRST, ... and they were completely ignored [by Sia]. ... That type of false promise is so damaging for trust in terms of a disability community or a minority community against a majority voice that is trying to talk over us." "As autistic AAC users like Cal Mongtomery, Damon Kirsebom, and Hari Srinivasan said in the film LISTEN, which was made in response to Sia's film, 'Ask nonspeaking autistics. Listen to nonspeaking autistics.'")

https://cute766.info/disability-visibility-project-montage/

Community Spotlight

https://www.facebook.com/photo/?fbid=1324643144411552&set=a.473050316237510

Spectrum: Autism at Cal

[Community Spotlight]

Our next spotlight is on Hari Srinivasan, who is Chair of our Education Committee for Spectrum: Autism at Cal.
Hari is a fierce advocate for autism and has also been the lead student instructor for the semester-long Autism DeCal course and writes about autism and disability for the Daily Cal. Hari is also on the board of the national autism advocacy organization, The Autistic Self Advocacy Network, ASAN. His wealth of knowledge, ideas, and experience has been integral in the growth of our organization.
A special thank you to Hari Srinivasan for his unique perspectives and wide support network; his significant contribution has allowed us to be where we are today

You can follow Hari on FB (Hari Srinivasan at Cal), Twitter (@harisri108), his articles in the Daily Cal (www.dailycal.org/author/haris/) or his blog uniquelyhari.blogspot.com.

“As a non-speaking autistic with significant other challenges that affect my daily life, I don't fit the traditional profile of the more put-together college going autistic. Today, I'm an undergraduate here at UC Berkeley majoring in Psychology and enjoying every moment of my interesting college experience which includes working at top notch research labs. So when I think of myself and about autism, the word that comes to mind is possibility, "Hari-as-possibility!" My road is uncharted for sure but without possibility there can be no opportunity. All of us, abled or disabled, want to be contributing members of society. So I hope to do much more in my life and continue to help others along the way.

This is my third semester as a student instructor for the autism course here at UC Berkeley. It has become an increasingly popular class with the initial class size of under 20 increasing to 25 and now to 30+. While acceptance of autism is still in its infancy, I am just so amazed, awed and encouraged by the students in the class each semester who want to expand their knowledge and perspectives on what autism is. My hope is that this will not only positively impact them in the way they come to view and interact with autistics in their future lives but also make them part of the solutions.

It was inevitable that I would be part of Spectrum:Autism at Cal here on campus, though I found out about the student organization only during my second semester, when I passed by the booth on Sproul Plaza. The experience has been very satisfying as the org has increasingly been working on increasing volunteering and community outreach and supporting local autism organizations in addition to raising campus awareness.”

Brian Liu

Thank you for everything you do Hari, and for being a great friend! You work so hard and have taught us so much

Debarshi Kundu

Thank you for being a fierce advocate for autism and autistic people, Hari!