Comprehensive data collection on accommodation implementation and retention rates would ensure accountability and help identify areas for improvement.
Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts
Accounting for Sensory Sensitivities and Communication Methods
"There may be apprehensions about whether positive psychology interventions can be effectively tailored to meet the unique and varied needs of all autistic individuals, considering our diverse sensory sensitivities, communication methods, and personal preferences." - Hari Srinivasan
Little research to help autistics like me
If I have not fully understood my own disability, it is, in part, because there has been little research to help autistics like me understand the full scope of it, as well as targeted education, medical, or therapeutic interventions that can help us navigate it.
-Hari Srinivasan, Time
UNCRPD
UNCRPD.
As an undergrad I had the opportunity to work on 42 case studies of the implementation of the UNCRPD by signatory countries. I learned so much about disability challenges, especially in under-resourced nations. Thank you Professor Pineda for that internship opportunity.
Disability Rights and both human rights and civil rights. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) represents a monumental step towards ensuring equal rights and inclusion for people with disabilities worldwide.
What is the UNCRPD… Read on
The Birth of UNCRPD
UNCRPD’s journey began in the early 2000s, rooted in a growing recognition that existing international human rights instruments were insufficient in protecting the rights of persons with disabilities (PWD). The Convention was adopted by the UN General Assembly on December 13, 2006, and it opened for signature on March 30, 2007 where it received an overwhelming response; with 82 countries signing the Convention on opening day, making it the highest number of signatories in history to a UN Convention on its opening day. As of today, there are 182 parties to the Convention, including the European Union, which signed as a regional integration organization.
The drafting process of the UNCRPD was marked by unprecedented collaboration between governments and civil society, particularly organizations of PWDs. The "Nothing about us without us" motto became a central theme, ensuring that the voices of PWDs were at the forefront of the discussions.
The first Conference of States Parties (COSP) to the UNCRPD was held in 2008 at the UN Headquarters in New York. This conference is an annual event where signatories gather to discuss progress, challenges, and strategies related to the implementation of the Convention. The COSP plays a crucial role in maintaining momentum and ensuring accountability among the States Parties.
Since its adoption, the UNCRPD has led to significant changes in legislation and policy around the world. Countries that have ratified the Convention are obligated to align their national laws and policies with its principles. This has resulted in greater awareness, increased accessibility, and more inclusive education and employment opportunities for PWDs. The Convention continues to inspire movements and advocacy efforts globally, reinforcing the idea that disability rights are human rights and that every person deserves to live with dignity, autonomy, and equality.
The UNCRPD is more than just a legal document; it is a powerful tool for change, reflecting a global commitment to ensuring that PWDs enjoy the same rights and opportunities as everyone else. Its history, structure, and impact demonstrate the ongoing efforts to build a more inclusive world where diversity is celebrated, and everyone is empowered to participate fully in society. The contributions of dedicated disability rights activists were instrumental in its creation and continue to drive its implementation, ensuring that the principles of the Convention are realized in the lives of persons with disabilities worldwide.
The U.S. and the CRPD
The United States signed the UNCRPD on July 30, 2009, indicating its support for the treaty's principles and its intent to promote and protect the rights of individuals with disabilities. However, despite signing the UNCRPD, the United States Senate has not ratified the treaty. This means that, although the U.S. has expressed its endorsement of the CRPD by signing it, the treaty has not been approved by the U.S. Senate and thus is not legally binding in the United States. The U.S. continues to adhere to its own disability rights legislation, such as the ADA, which served as an inspiration for the UNCRPD.
Main Sections of the UNCRPD
The UNCRPD is a comprehensive document that outlines the rights of disabled persons and the obligations of States Parties to promote, protect, and ensure these rights. It is divided into several key sections:
Preamble: This sets the context and outlines the underlying principles of the Convention.
General Principles (Article 3): Includes principles such as respect for inherent dignity, non-discrimination, full and effective participation and inclusion in society, respect for difference, and acceptance of persons with disabilities as part of human diversity.
General Obligations (Article 4): States Parties commit to ensuring and promoting the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination.
Specific Rights:
Equality and Non-Discrimination (Article 5)
Accessibility (Article 9)
Right to Life (Article 10)
Equal Recognition Before the Law (Article 12)
Access to Justice (Article 13)
Liberty and Security of Person (Article 14)
Freedom from Torture (Article 15)
Freedom from Exploitation, Violence and Abuse (Article 16)
Living Independently and Being Included in the Community (Article 19)
Education (Article 24)
Health (Article 25)
Work and Employment (Article 27)
Participation in Political and Public Life (Article 29)
Implementation and Monitoring (Articles 33-40): These articles describe the measures for implementation and monitoring, including the establishment of a Committee on the Rights of Persons with Disabilities to oversee the Convention's implementation.
Disability and Multilingualism
UNESCO is celebrating this International Literacy Day 2024 by highlighting multilingual changemakers on a global scale. Among them is Hari Srinivasan, a trailblazer for disability rights, who is a multilingual American child of immigrants
Read Full Article at unesco.org...
"The solution for such autistics cannot be... the liberal use of the psychotropic medications, which are unreliable Band-Aids with long- term health effects. Many of my peers in special education slowly disappeared into the black hole of being sent away to the modern day equivalents of institutions as their behaviors were no longer "manageable’ at home or in a community setting. Out of sight also means out of mind for society."
- Hari Srinivasan, Newsweek
Caught Between Tears and Stoicism
It is patronizing of social media to imply that expressions of emotion are "OK" after learning he’s disabled, as if society is willing to make the occasional exception rather than challenge its norms.
Read Full Article at
My Ted X talk titled "Pebbles in the Pond of Change
Hari Srinivasan, shares a powerful message about the power of small actions in creating ever-widening ripples in the pond of change. Drawing from personal experiences and the legacy of disability rights leaders, he redefines progress as a journey that starts with simple, accessible steps. His inspiring message encourages everyone to identify and act on their own "small pebbles" to drive societal transformation.
Relationship as a building block
I've had the privilege of listening to Hari Srinivasan share his perspective on various topics over the years. His ability to share his personal narrative paired with the current science is an incredible gift. As Mr. Srinivasan shares, "All humans, disabled or not, yearn for human connections that enrich their lives beyond a mere fulfillment of basic needs."
Indeed relationship is one of the building blocks of the PERMA+ theory of wellbeing (R=Relationships). Like Mr. Srinivasan, I too am looking to Vivek Murthy and his wisdom to help us all with his wise words, including, "While loneliness has the potential to kill, connection has even more potential to heal." Here's to 2024 being a year of connection. #wellbeingwins
Read at Time: The Pervasive Loneliness of Autism https://time.com/6551520/loneliness-autism-essay/
My other list of Publications: https://uniquelyhari.blogspot.com/p/published-work.html
Over Focus on Productivity
Mainstream discussions around remote and hybrid employment models often focus on productivity, or the perceived reduced networking and socialization.
Paradoxically, these very reasons serve to increase productivity for many disabled people, including the autism community.
- Hari Srinivasan, Fortune
Read full article at https://fortune.com/2023/07/27/flexible-work-critics-using-same-arguments-were-used-oppose-disabled-ramps-closed-captioning-equity-access-never-optional-remote-work-careers-hari-srinivasan/
It is not the same being given enough time to finish an exam, in a setting that is conducive to focusing on answering the exam
Article Link: https://www.psychologytoday.
In education and in the workplace, appropriate accommodations are crucial for people to learn and to perform at their best. This article tackles the "reasonable" piece of the ADA rule. Who decides what "reasonable" is?
Even when accommodations are nominally given, the quality of the accommodation can vary immensely. It is not the same being given enough time to finish an exam, in a setting that is conducive to focusing on answering the exam, than having "1.5x" the time in a room with noisy people, in the middle of a lab, or in the professor's office, under the professor's gaze.
The article was written by Hari Srinivasan, who is a fellow member of the College Autism Network
In-person employment in autism
https://fortune.com/2023/07/27/flexible-work-critics-using-same-arguments-were-used-oppose-disabled-ramps-closed-captioning-equity-access-never-optional-remote-work-careers-hari-srinivasan/
Disability and Multilingualism
Growing up, Hari Srinivasan remembers repeatedly learning about St. Patrick’s Day in his special education classroom—a holiday that, while interesting, felt disconnected from his own cultural heritage.
Read Full Article at unesco.org...
Genetic Differences Between Autism and ADHD—and Why It Matters
Genetic Differences Between Autism and ADHD—and Why It Matters
On the surface, autism and ADHD might look like they share some overlapping behaviors, especially in areas like attention and impulsivity. But beneath those similarities, the genetic research on each reveals fundamental differences. And with more people receiving both diagnoses (often called AuDHD), genetic research is starting to explore how these conditions interact in the same person.
ADHD: A Focus on Dopamine and Attention
One of the most consistent findings in ADHD research is the role of dopamine, a neurotransmitter that helps regulate attention and motivation. ADHD individuals often have differences in dopamine pathways, making it harder to focus and control impulses. Genetic research has honed in on genes like DRD4 and DAT1, which impact dopamine receptors and transporters, the mechanisms that manage dopamine levels in the brain. This focus on dopamine has led to effective ADHD treatments, such as stimulant medications that boost dopamine. But these meds don’t always work the same way in autism.
Another big area in ADHD genetic research is polygenic risk—the idea that many small genetic variations combine to raise ADHD risk. By studying these variations together, researchers are building genetic “risk scores” to better understand each person’s overall predisposition to ADHD.
Autism: A Complex Web of Genes
Autism, in contrast, has a more diverse genetic landscape. Autism genetics doesn’t just focus on one system like dopamine; it spans pathways involved in synaptic development (how brain cells connect) and sensory processing. Genes like SHANK3 and CHD8 are heavily studied because they’re critical for neuron communication, affecting social interaction and sensory integration.
Autism genetics includes both polygenic influences and rare, single-gene mutations. This mix shows that autism isn’t a “one-size-fits-all” condition and involves a wide range of genetic influences—making autism research complex but incredibly informative.
Why ADHD Medications Don’t Always Work in Autism
Since ADHD and autism have different genetic roots, treatments that work well for ADHD may not work the same way in autism. For example, stimulants boost dopamine levels and are effective for ADHD, but autism involves additional neurotransmitter systems like GABA and glutamate. For autistic individuals, boosting dopamine may not address their primary challenges and can even lead to side effects like increased anxiety or sensory sensitivity.
This phenomenon, called differential drug response, is why treatments need to be tailored more closely to each condition.
The Overlap- Understanding AuDHD
Many autistics also meet the criteria for ADHD, and research suggests they experience a unique blend of traits. Genetically, there are overlapping patterns, particularly in dopamine, serotonin, and synaptic pathways. This shared foundation is prompting researchers to think of autism and ADHD as conditions that can intersect within the same person, rather than existing in isolation.
Understanding the unique profile of AuDHD could reshape how we approach treatment. Right now, genetic testing and treatments for autism and ADHD often operate in silos, leading to medications being prescribed without considering their impact on combined traits. A focus on AuDHD could lead to integrated approaches that tailor interventions to address overlapping needs.
Bringing It All Together
In summary, ADHD genetics zeroes in on dopamine-related genes that influence attention and impulsivity, while autism genetics explores a wider range of genes involved in synaptic function, sensory processing, and neurodevelopment. For those with AuDHD, understanding these combined influences can lead to support and treatments that don’t just fit the condition but fit the individual.
This is the future of neurodevelopmental treatment—a future where we move from “one-size-fits-all” to “one-size-fits-one.”
Exclusion of those with more complex needs
"Key concerns.... oversimplification of needs and the potential exclusion of those with more complex challenges when focusing solely on strengths and well-being. This approach risks neglecting the intricate support required by many on the spectrum. " - Hari Srinivasan
"We must dispel the notion that any medical intervention is inherently harmful. Many autistic peers I know experience chronic sleep deprivation, multiple seizures, pain, autoimmune conditions... spend the entire night on the toilet due to gut issues... engage in intense self-injurious behaviors, aggressive behaviors, and frequent meltdowns, which leave them home-bound. Living in a state of chronic unwellness is not conducive for inclusion. The quality of life for such autistics is challenging, no matter what kind of societal supports (inadequate as they are currently), or opportunities are put in place for inclusion."
- Hari Srinivasan, Newsweek
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