Uniquely Hari

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

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.

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

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.

1. Dopamine

Pathways: Mesolimbic, mesocortical, nigrostriatal, and tuberoinfundibular pathways.
Roles: Dopamine is crucial for reward, motivation, motor control, and a plethora of behavioral processes.
Why Interesting: dysfunction is linked Parkinson's (due to loss of dopaminergic neurons in the nigrostriatal pathway), schizophrenia, and addiction. The balance of dopamine levels is crucial for mental and physical health.

2. Serotonin

Pathways: Originates from the raphe nuclei and projects widely throughout the brain.
Roles: Regulates mood, anxiety, appetite, and circadian rhythms.
Why Interesting: involvement in a broad range of psychological and bodily functions, as well as role in psychiatric disorders (e.g., depression, anxiety disorders) and the action mechanisms of various antidepressants, make it a key focus in psychopharmacology.

3. Glutamate

Pathways: The main excitatory neurotransmitter, widespread throughout the brain.
Roles: Critical for synaptic plasticity, learning, and memory.
Why Interesting: role in excitotoxicity and neurodegenerative diseases, as well as learning and memory, offers a dual perspective on its importance in maintaining neural health and function.

4. GABA

Pathways: The primary inhibitory neurotransmitter in the brain, it has widespread action.
Roles: Regulates excitability throughout the nervous system.
Why Interesting: GABA's balance with glutamate is vital for the prevention of neurodegenerative diseases and conditions such as epilepsy. Its mechanisms and effects on anxiety and sleep also make it a significant.

5. Acetylcholine

Pathways: Includes the nigrostriatal pathway and projections from the basal forebrain to the cortex and hippocampus.
Roles: Involved in learning, memory, and muscle contraction.
Why Interesting: role in Alzheimer's disease (due to the degeneration of cholinergic neurons) and involvement in the sleep-wake cycle.

Insights and more

Cell Press and The Lancet invite you to a free virtual panel examining 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

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