Reclaiming "Person with Autism"

I'm reclaiming the use of "person with autism" and am not offended by it. It is part of who I am. 

When you reclaim language as a positive, it cannot be used against you. Others lose the power to use it as a negative against you.

I am both 'autistic' and a 'person with autism'

IFL v PFL

Identify First Language (Autistic/ disabled) v Person-First Language (Person with Autism, Person with Disability) 

Seriously, with the amount of airtime spent on this topic,  one would think this is the only and primary issue facing autism. Can we move on already and just accept both. We have SO MANY CRITICAL ISSUE TO FOCUS ON and this is not one of them. 

Let me remind you, person-first-language was literally the language of the disability rights movement (DRM). Without that, none of us can even move about in society. All our legislation uses this language

• Americans with Disabilities Act
• Individuals with Disabilities Education Act
• United Nations Conference on Rights for Persons with Disabilities (UNCRPD)

These laws were meant to uplift us. So how can "person with autism" be degrading?

I was told that this was projects fragmentation, a separation of our autism from our human self. In fact if that is even possible, there are aspects of my 'undesirable parts of autism" that I would very much like to distance from, if that is even possible - like my behavioral challenges, mood swings, my OCD, my health issues. So that argument does not fly because I can't even separate those even if I want.  So why are we having these circular arguments. 

And if we think something is undesirable, instead of fighting it, let's take control of the narrative, let's own it, let's rebrand and repurpose it. When you reclaim language as a positive, it cannot be used against you. Others lose the power to use it as a negative against you.

The wheelchair user community have done this already - they have turned "cripple" into the very positive "crip" (Krip Hop, Crip Camp the Oscar nominated movie). That is such a BRILLIANT move and I am in deep admiration. I've heard one of my disabled professors, Dr Victor Pineda, being referred to as a "super-crip" by Stuart James (Exec Director of  Berkeley Center for Independent Living) and I thought that term was so super cool. 

Autism was a latecomer to the DRM and we adopted IFL later as well. 

If a person wants to use IFL, that's fine too.  

If a person want to continue using PFL that's fine too. 

I would say let's use and encourage both. 

Why is this important?

A few years back there was an NYT article that suggested re-introducing state run institutions. I think you will agree that institutions is "BAD" on so many levels -  negates the entire DRM efforts which fought to get people out of institutions. There was a twitter storm over the article. But the criticism was NOT about INSTITUTIONS, but rather over the fact of "person with autism" used in the article. 

How is "person with autism" more important than re-introduction of institutions? 

What is this obsession of the autism community with a narrow focus on this one little issue of person-first over everything else. Our priorities are SO MESSED UP. 

I understand that people can have preferences but seriously it does not merit the amount of discussion time it currently gets. 

LETS ENCOURAGE AND ACCEPT BOTH. Let's make both as positive for us, so we don't have to keep circling this one issue. 

Lets' move onto the real issues in autism please. 

I'm reclaiming the use of "person with autism" and am not offended by it. It is not diminishing who I am. I am both 'autistic' and a 'person with autism'

- by Hari who is both "Person with Autism" and "Autistic"

PS: Language usages

Brits say : I'm going to visit my friend"

Americans like to say: "I'm going to visit with my friend"

 

Did the additional "with" change the meaning. 

My Duke Keynote was one of the highest attended in the 10 year history of Duke Autism Summer Series

 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.

The role of the autistic in research

Thoughts around autistic people leading research rather than only participate by giving accounts of lived experiences.

I think rather than talking about one autistic or neurotypical being the leader, which seems to imply a position of dominance by one group, we should be thinking more in terms of what Judy Heumann used to term as Collaboration Cooperation. Both disabled researchers and non disabled researchers need to work together for meaningful change. And most research is a team effort anyway. What the non disabled researchers bring to the table is a lot of experience in how to go about research and they’ve had a couple of centuries of head start in this. When you combine this with collaboration and leadership of autistic researchers you get the following added benefits.

1. Autistic insights through a nuanced understanding of autistic experiences that cannot be fully captured by observation or second-hand accounts. 
2. Innovative approaches through distinct cognitive and perceptual experiences. This can lead to innovative research methods and findings that might be overlooked by non-autistic researchers. 
3. Increased relevance and application towards practical and relevant issues. 
4. Empowerment and representation as autistics in leadership, challenges traditional narratives of them only being research subjects. 
5. Reducing bias in data interpretation from a neurotypical lens. 
6. Building trust among autistic participants that this research is likely to be ethical and beneficial.  
7. Policy and practice impact as autistic researchers are more likely to advocate for changes that directly improve the lives of autistics. Their leadership in research can influence policy, educational practices, and therapeutic approaches in ways that are more aligned with the needs of the autistic community.

I'm giving a TedX talk

Apr 20, 2024 (In-Person) in Folsom, CA
TedX Event: https://www.ted.com/tedx/events/56378
Tickets: https://tedxfolsomhighschoolyouth.ludus.com/index.php
Hari Srinivasan: "Pebbles in the Pond of Change"

 

Upcoming

 

If you missed Hari Srinivasan at our Duke seminar series, there's another chance to hear more from him on a related topic in this webinar next week.

Insights and more

Cell Press and The Lancet invite you to a free virtual panel examining hashtag#neurodiversity within the scientific community.

Through a series of engaging presentations and a live Q&A, this event will feature insights from leading experts. Panelists Mary Doherty (University College Dublin), Hari Srinivasan (Vanderbilt University) and Axelle Ahanhanzo (LAUDACE) will offer insights into making spaces safer for neurodivergent people, discuss intersectionality and neurodivergence, and unpack the importance of evolving scientific language to reflect lived experiences while ensuring rigorous scientific investigation.

Gain a deeper understanding of the value of neurodiversity in propelling scientific progress.
Register today: https://lnkd.in/eMyh9dZe

hashtag#science hashtag#innovation hashtag#research

 

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.

https://www.dailycal.org/2018/04/12/compulsion-complexity

 

Midday Muddle

There is a total solar eclipse today and Nashville lies in the path of totality.

A fun poem poking fun at bats and the eclipse. 
 

Midday Muddle

Bats take flight in solar eclipse gloom.

The day must had donned its nightcap, zoom!

A dance of glee, a faux night delight

Till sunlight peeked, they fled in flustered flight.

But do bats really come out during solar eclipse thinking it's night?

The idea that bats come out during a solar eclipse, mistaking it for night, is based more on anecdotal observations than solid scientific evidence. Bats use a combination of cues for navigation and determining the time of day, including light levels but also their internal biological clocks. While it's plausible that the sudden darkness of a total solar eclipse could confuse some bats into thinking it's dusk or dawn, prompting them to emerge, scientific studies on this specific behavior are limited. However, there are reports and observations of animals, including bats, exhibiting unusual behavior during solar eclipses, such as birds falling silent or nocturnal animals briefly becoming active.

It's worth noting that not all bat species would react the same way, and the extent to which they become active would likely vary depending on the local environment, the species, and the specific circumstances of the eclipse.

Special Interests - Autism Humor on Autism Sterotypes

 

https://www.peasepress.com/product-page/essential-truths-the-bay-area-in-color

 

RadMad Shoutout.

 A shoutout from my old lab, the amazing makerspace UC Berkeley Rad Mad Disability Lab

Let’s give a round of applause to our alumni Hari!! Hari, previously our lead in Team Propaganda, has recently been awarded the 2024 National Science Foundation (NSF) Graduate Research Fellowship.
The RadMad Lab is proud of you!!