This incredible TIME piece by Hari Srinivasan beautifully articulates so many of the complicated feelings I have about my son’s journey to independence.
“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. The perceived division between independence and dependence is a flawed notion. Embracing this truth could pave the way for a more inclusive society that transcends the limitations of societal norms and helps us build better support systems that result in enduring human social connections for people with autism.”
All humans live in a cycle of dependency
Autism Cares Act 2024 Reauthorization
Key Highlights of the Autism CARES Act of 2024:
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."
- Extends the program's authorization to 2029.
- Updates terminology to be more inclusive and accurate.
- 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.
- Requires annual summaries and biennial updates on activities.
- Extends the committee's authorization to 2029.
- Updates the timeline for required reports to 2024.
- Adds a requirement for a report on young adults with autism transitioning to adulthood.
- 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.
- 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.
- 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
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
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
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.
For those on the spectrum the range of mourning is even wider and complex
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
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
Fortune Article
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
- ("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
- 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.")
- (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.'")
Community Spotlight
https://www.facebook.com/photo/?fbid=1324643144411552&set=a.473050316237510
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