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.
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
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.
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.
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.
Language Choice
Impact of language choices in scientific publication on representation of autistic researchers.
The impact manifests in several key ways.
- Inclusivity and Accessibility. Language that is clear, direct, and jargon-free is more accessible to a wider audience. Which means a wider spectrum of autistics can engage more fully with scientific content, whether they are authors, reviewers, or readers.
- Bias and stigma.
- Representation. Who is getting left out and who is getting included.
- Authorship and collaboration. Autistics may face barriers in scientific publishing due to implicit biases in what is considered rigorous or appropriate academic language. This can discourage participation or lead to under representation in authorship and peer review processes.
- Ethical considerations. Engaging the autistic community ensures that scientific discourse does not inadvertently marginalize or misrepresent groups.
- Policy and guidelines. Journals and publishers can influence language norms through their style guides and editorial policies. By adopting guidelines that favor inclusive and respectful language, publishers can lead the shift towards more equitable representation in scientific literature.
Role of Media in fostering inclusivity
Thoughts on the role of editors, journalists, publishers on fostering broader societal inclusivity
1. Irresponsible reporting: I absolutely am irritated by articles that to try to stir up old controversies or conspiracy theories trying to malign/discredit the most marginalized autistics, while pretending to be their champion. Its hypocritical and magazines should not be printing this stuff. In what way is this helping us. It's such a total waste of airtime, because the eye on the ball should move forward, towards progress and solutions so the marginalized can move forward.
2. Understanding 'Evidence-Based' in the context of Autism Heterogeneity: Blindly reporting that something is evidence based for autism is not helpful because practitioners and educators literally take that at face value, and do a blanket application for ALL of autism. In reality evidence based only applies to a small profile (discussed in my recent Time magazine article), which means Evidence Based Interventions have to be taken with spoonfuls of salt for the rest of autism.
Ergo, if "evidence based" does not work for an autistic, it's not the fault of the autistic for not progressing, it's a failure of research that has not found solutions for them.
Because the consequence for the autistic who does not improve with this evidence based stuff is extreme. They are basically written off and kept in special programs and group homes. And then we complain that this group is eating up resources and asking for attention.
3. Media needs to call out the Utter Lack of Action: An example is that GI issues were being discussed when I was diagnosed two and half decades ago. Earlier this year, there was an article which made it seem linking GI and autism was a brand new discovery. The sad part is that because there has been no movement in finding explanations and solutions on this front for two and half decades, it looks like it's a brand new issue when it's not.
4. Including a call to action. One magazine told me that I should not be including a call to action. Which kind of seemed counterintuitive because then these disability stories primarily become objects of pity and sympathy or inspiration porn. While this may increase readership, they don’t do anything to help us. We want the story to generate action because action is the actual impact.
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.
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.
- Autistic insights through a nuanced understanding of autistic experiences that cannot be fully captured by observation or second-hand accounts.
- 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.
- Increased relevance and application towards practical and relevant issues.
- Empowerment and representation as autistics in leadership, challenges traditional narratives of them only being research subjects.
- Reducing bias in data interpretation from a neurotypical lens.
- Building trust among autistic participants that this research is likely to be ethical and beneficial.
- 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.
Duke ACE Website Writeup
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
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.
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"
TedX Event: https://www.ted.com/tedx/events/56378
Tickets: https://tedxfolsomhighschoolyouth.ludus.com/index.php
Hari Srinivasan: "Pebbles in the Pond of Change"
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