An endless cycle of labels in autism

 Targeted interventions for autism don't need creation of more new labels.

The issues that need help, were present there before the label creation and still exist x years after the label.

In another 5-10 years, another new catchy trademarked label will appear

What missing is action towards actual solutions in the last 30 years.

Solutions not more talk or more labels

I would like to see ACTION on ACTUAL SOLUTIONS - communication, biomedical physiology (physical/mental health), sensorimotor, policy, funding, myriad equity of access issues. Level the playing field so that ALL autistics can make use of opportunities. Thats quality of life.

Simultaneously reclaim and destigmatize existing labels so they can’t be used against you, instead of airtime and resources creating more and more new labels /terminology and then more airtime arguing about which is good/bad.

Last Class at Berkeley

This day 2 years ago.  

OMG. My very last undergrad class at Berkeley. 

Berkeley Haas Scholars at work. 



Shoutout from FCAI


We are thrilled to announce that Hari Srinivasan, one of our Neurodiversity Inspired Science and Engineering Fellows at the Frist Center for Autism and Innovation, has been awarded the prestigious National Science Foundation Graduate Research Fellowship for his work in Neuroscience.

The NSF GRFP is a tremendous achievement and a testament to Hari's hard work, dedication, and innovative research approach. As a neurodivergent individual, Hari brings a unique perspective to the field of Neuroscience, and his work, with its potential to make a significant impact on the lives of the community, is truly inspiring.

At the Frist Center for Autism and Innovation, we are committed to promoting neurodiversity and providing opportunities for individuals like Hari to flourish in science and engineering. We believe that neurodiversity is a strength, and we are proud to support Hari and other neurodivergent researchers in their quest to make a difference in the world.

On behalf of the Frist Center for Autism and Innovation, we would like to extend our heartfelt congratulations to Hari on this well-deserved honor. We are not just proud, but deeply appreciative of all that he has accomplished and look forward to seeing all the amazing things that he will achieve in the years to come. Hari is an inspiration to us all, and we are grateful to have him as a part of our community.

hashtag#Neurodiversity hashtag#Neurodivergence hashtag#ASD hashtag#Autism hashtag#Strength hashtag#SocialModel hashtag#NSF hashtag#GraduateStudent hashtag#Fellowship hashtag#NationalScienceFoundation hashtag#GraduateFellowship hashtag#Congratulations hashtag#Awards
 

Autism Space seen as profit making space by Private Equity

 Autism Space seen as profit making space by Private Equity

This is a continuing and troubling trend in autism. 

'...private equity investments per year tripled or quadrupled from 2018 to 2021 compared to 2015.

 ...expected investment to continue at breakneck speed

“...They needed to start showing profits and revenue that match their valuation. … So at some point, [investors] need to start seeing a return on their investment,”

 ...autism therapy space could be at the point of the investment life cycle where investors are pressuring operators to shift from scale to efficiency and profitability.

...opening clinics that reach targeted patients while being “financially healthy,” Marsh said. 

https://bhbusiness.com/2022/07/22/why-the-massive-investment-in-autism-companies-created-a-ticking-timebomb/

Neurodiversity Misattribution

https://journals.sagepub.com/doi/full/10.1177/13623613241237871

While neurodiversity is popularly attributed to Judy Singer, it was in fact a collective effort of many autistic activists in the 1990s. A correct in attribution is overdue.

"For some time, the coinage and theorizing of the concept of ‘neurodiversity’ has been attributed to Judy Singer. While Singer published one early book chapter on the neurodiversity movement in 1999, she was only one of many working on theorising neurodiversity, and certainly not the first. In fact... ‘neurological diversity’ or ‘neurodiversity’ concept – and body of theory surrounding it – was collectively theorised and developed by autistic activists, primarily in the autistic community email list Independent Living in the mid-1990s. While much of this earlier theorising, and that which followed, has been lost due to being on now defunct emails lists, forums, blogs, and so on, in our view, it is important to clarify the multiple origins of the concept. This allows us to correctly show that neurodiversity theory arose and was developed collectively among autistic activist communities, rather than originating with any individual"

Its like the way I had attributed "inspiration porn" to Stella Young, who had used it a Ted Talk and thus popularized it. But the term was coined by comedian Maysoon Zayid. Thanks to disability rights activist, Rebecca Cokley who knows both was nice enough to correct the attribution.

A kinder ABA is a therapist driving you to the point of frustration, then offering to hold your hand

https://link.springer.com/article/10.1007/s40617-023-00833-w 

Good grief is all I can say. 

Adding the prefix of "Kind" to something does not automatically make anything automatically Kinder. As is peppering a paper with the word "Kind" to sublimely influence you that it must be kind. 

And a sample size of 4 autistics in the study makes this a valid method, how?

And what did this  "kind" translate to exactly. when a therapist drives you to the point of a tantrum in the first place, then offers to hold your hand, and saying "I can see you are frustrated."

Is this a new marketing strategy by the (massive-profits with no accountability) ABA industry to make even more profits of desperate families. 

Please don't joke around with studies trying to whitewash stuff. This is not helping.  




AAPI Autism


Save the date: Wednesday, May 29
Time: 10 AM PT
Event: Free Virtual Panel

Reserve your spot now at bit.ly/ambiv-events 

I am very excited to share that, alongside Kim Chua, we will be moderating the upcoming AAPI Autism Self-Advocacy Panel, an initiative by the AMBIV Collective to amplify the voices of autistic self-advocates within the AAPI community for AAPI/AANHPI/APIDA Heritage Month in May.

Join us on Wednesday, May 29 at 10 AM Pacific Time/ 1 PM Eastern Time for an empowering and insightful virtual discussion. Our incredible panelists, each with their own unique experiences, will be sharing their journeys of self-advocacy, exploring how they intertwine their rich cultural heritage with autism to foster change and understanding.

This panel is not just a conversation but a step forward in embracing the diversity of the autism community and ensuring that all voices are heard and valued.


Let's come together to support and learn from the experiences of the AAPI autistic community. I look forward to seeing many of you there!
Don't miss our upcoming online panel featuring inspiring autistic Asian American and Pacific Islander self-advocates! 🌟

Join us for an engaging conversation as they share their unique journeys, self-advocacy experiences, and insights on the intersection of autism and their cultural heritage. This event offers a valuable opportunity to learn, connect, and champion inclusion.






 

Interoception

Interoception refers to the perception and awareness of internal bodily states. It involves the ability to sense and interpret physiological signals originating from within the body, such as hunger, thirst, heartbeat, temperature, respiration, and the need for bodily functions. Interoception is crucial for maintaining homeostasis and overall well-being as it allows an individual to respond appropriately to bodily needs and emotional states. This internal sensory system plays a significant role in emotional experiences and self-regulation by linking physical sensations with emotional responses.

Relevance to Autism

For example, interoceptive awareness includes the ability to feel a racing heartbeat when anxious or to recognize a sensation of fullness to prevent overeating. In autism, this sense may be heightened or diminished, leading to unique challenges such as difficulty in identifying states of discomfort or illness, or misinterpreting signals of emotional changes which are critical in social interactions and personal health management. Moreover, the role of interoception in autism extends to fundamental daily activities; it influences everything from toilet training—where recognizing the need to urinate can be delayed or unclear—to managing anxiety and stress levels in response to overstimulation or environmental changes. These distinct interoceptive experiences can significantly affect how individuals with autism recognize and communicate their needs and emotions, thus requiring tailored strategies that address these sensory processing differences to enhance their quality of life and autonomy."

TedX


In the spirit of spreading ideas, TEDx is a program that brings people together to share a TED-like experience. At a TEDx event, live speakers and TEDTalks videos combine to spark profound conversations and connections in a small group.


The upcoming TEDxFolsom High School Youth event promises to be an inspiring experience. The speakers are prepared to unleash their inner selves, share their stories and emotions, and spread the one idea everybody has been waiting for. They aim to bring change to the community and show their spark to the world. The event will allow high school students to stand alongside adults and unleash their hidden power.

One of these speakers will be FCAI’s own Hari Srinivasan, Neurodiversity Inspired Science and Engineering Fellow. This event is open to the public, and tickets are available here.