It was a thought provoking read about an angle that I hadn’t thought of. It is also beautifully written.
https://time.com/6551520/loneliness-autism-essay/
The Access Ramp to Volunteering
From: https://www.dailycal.org/2018/04/05/access-ramp-volunteering
But being differently-abled puts a whole new light on this access. The fact of the matter is that people with disabilities are, more often than not, excluded from the arena of volunteering. Disabled folks are often regarded as the recipients of volunteering rather than the providers of service. In the past, I’ve had myriad high schoolers spend their time with me, helping me through art and dance classes or playing basketball and video games.
Many people traditionally think that volunteering requires social interaction skills and the ability to handle oneself physically well in face-to-face interactions.There are many nuances to volunteering — you may have to travel somewhere, meet people, explain, physically assist and have decent fine motor skills. Given my lack of verbal communication skills and my disorganized body, these requirements seemed like an impossible bar for me to meet.
For the longest time, I wondered if individuals like me would ever get the experience of volunteering. Fortunately for me, I discovered that there are nontraditional ways that one can volunteer — I just needed to not be boxed into the mindset of the traditional skill set. So I drew upon my writing skills as a source of volunteering. During my high school years, I embarked on projects such as image description for Bookshare. Bookshare is a resource that converts textbooks into accessible formats for folks with print disabilities. I was part of the team that created a detailed description of the diagrams in these textbooks so that they too could be included in the audio format. I’ve also done other volunteering tasks, such as translating data-heavy field reports about the plight of the children of migrant brick-kiln workers into web-friendly content for a literary project.
Volunteering in these nontraditional ways made me feel like I too am a contributing and productive member of society, no matter my disability status. I had expected to find more such opportunities when I joined UC Berkeley. After all, UC Berkeley is known for its activism and service organizations, so I assumed that there must be some role for me. A majority of the booths that line Sproul Plaza are aimed at service activity and actively seek student volunteers. I’ve even heard stories of students being overwhelmed by the number of flyers pushed on them as they walk down Sproul. Alas, I usually walk away from Sproul “flyer-less.” Apparently, the outward face of disability does not invite the receipt of flyers. A series of students walking in front of me are handed a flyer. But when I approach, the hand that is raised up to hand out flyers drops down to the side and the student very politely waits for me to walk past. I wonder whether there are subtle behaviors that precede the receipt of a flyer. Perhaps there is a certain level of eye contact, fleeting or otherwise, that takes place before a flyer is handed over. Making eye contact is not something that we autistics are known for.
Likewise, when I walk up to a booth to inquire about volunteer opportunities, I am usually met with bemused or skeptical looks. The presumption is that I would not be able to do it anyway. At the end of the day, it’s not so much the flyer we seek — rather it’s the opportunity to make our small mark on society. I’m still trying to figure out how to get involved in volunteering at UC Berkeley and what my role could be. I am not the ideal person for the “clean-up-the-park” kind of physical volunteering, but there must be existing tasks or potential tasks that do not require body coordination and verbal skills.
In the meantime, I’m trying to get involved in other ways. This semester, for example, I’m writing this column for The Daily Californian. An opinion column in a newspaper publication is not technically “volunteer” work. Nevertheless, I am excited at its reach in raising awareness about issues that differently-abled students like me face on a daily basis. If I have helped contribute toward improving the quality of life of even one other special-needs individual by changing attitudes of people around them, the effort on my part is totally worth it.
To the student handing out flyers on Sproul and manning the booths: Take a chance on the rest of us, even if we don’t fit the typical profile. Presume competence. There is actually a lot of untapped potential and new perspectives that can be gained when the differently-abled like me are involved and included in volunteering efforts too.
Diagnostic Overshadowing
Diagnostic overshadowing in Autism occurs when the symptoms and behaviors associated with autism obscure or overshadow the presence of other mental or physical health conditions. This can lead to misdiagnosis, underdiagnosis, or delayed diagnosis of other conditions, ultimately impacting the individual's overall care and treatment outcomes.
Key Points
Misattribution of Symptoms: Symptoms that might indicate another disorder are often interpreted as part of the autism, leading to misattribution. For example, anxiety, depression, or gastrointestinal issues might be seen merely as behaviors or characteristics of autism.
Challenges in Communication: Communication challenges and Alexithymia faced by many autistics can make it harder for healthcare providers to identify additional conditions.
Biases and Assumptions: Healthcare providers may have implicit biases or assumptions about autism that lead them to overlook other conditions. They might assume that all behavioral issues or health complaints are related to autism without considering other potential causes.
Lack of Specialized Training: Not all healthcare providers are trained to recognize the complex interplay of autism and co-occurring conditions. This lack of specialized training can result in diagnostic overshadowing.
Impact on Quality of Care: Diagnostic overshadowing can result in inadequate treatment plans. If other conditions are not recognized, the autistic might not receive appropriate interventions or therapies that address their full range of health needs.
Examples
Mental Health: An autistic person might also have depression, but their low mood and social withdrawal may be seen as just part of their autism or obstinate or noncompliance, delaying the correct diagnosis and treatment of depression.
Physical Health: An autistic experiencing pain or discomfort due to a medical condition like GI issues might have their symptoms attributed to behavioral issues, leading to inadequate medical evaluation and treatment.
Addressing Diagnostic Overshadowing:
- Comprehensive Assessments: Conducting thorough and holistic assessments that consider both autism and potential co-occurring conditions.
- Training for Providers: Educating healthcare providers about the risks of diagnostic overshadowing and training them to recognize and differentiate symptoms.
- Effective Communication: Developing better communication strategies to help autistics express their symptoms and concerns.
- Awareness and Advocacy: Raising awareness among caregivers, educators, and clinicians about the importance of looking beyond autism to identify other health issues.
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Celebrating 25 Years of the Olmstead Decision
Celebrating 25 Years of the Olmstead v. L.C Decision
Today marks the 25th anniversary of the landmark 1999 Olmstead v. L.C. case, a pivotal moment that ignited the de-segregation and de-institutionalization of people with disabilities. This case paved the way for community-based supports and services, transforming the lives of countless individuals.
Two years ago, I had the honor of participating in a White House panel discussion commemorating the Olmstead Act's anniversary. The significance of the Olmstead Act cannot be overstated. Just a few decades ago, individuals with significant disabilities, including "higher-support" autistics, were often placed in institutions, hidden away from society.
Back then, families were still advised to send their autistic children away before they became too attached. Many "higher-support" autistics, unable to advocate for themselves, were at the mercy of "well-meaning" professionals who claimed institutionalization was best.
As a child, I didn't fully grasp what institutions were, my only reference being brief scenes from the movie Rain Man. It wasn't until college, during my Disability Studies courses with Professor Victor Pineda, that I truly understood the horrors of institutionalization. On the first day of class, we watched the documentary Lives Worth Living, which highlighted the disability rights movement. One of the most shocking segments featured Willowbrook, an institution in New York where children with disabilities lived in appalling conditions. The doctors at Willowbrook were so alarmed that they invited reporter Geraldo Rivera to expose the situation, shocking the world.
I used to think my low-expectation special education classrooms were degrading enough, but the thought of living in such inhumane institutions is truly chilling. The 2020 documentary Crip Camp mentions a camper from Willowbrook who would overeat to the point of sickness because he never got enough food there.
This history underscores the profound significance of the Olmstead Act for people like me. While we have made significant strides in disability rights, there is still much work to be done. I am deeply grateful to the disability rights icons who have paved the way, making it possible for many of us to enjoy the freedoms we often take for granted.
Though challenges remain, we continue to move forward, inspired by the resilience and determination of those who fought for our rights. Here's to 25 years of progress and many more to come.
Related posts: #Disability_History, #Disability_Legislation #Disability_Rights, #Olmstead_Act #Policy_Law
Embracing Kuleana - Our Collective Responsibility Towards Autism
Embracing Kuleana - Our Collective Responsibility Towards Autism
(Jun 21, 2024 is Native Indigenous People's day)
In the Hawaiian language, the word "kuleana" embodies a profound concept, combining responsibility and privilege. "Kuleana finds you if you are open to it." (1). This notion can be extended to our approach toward autism, It is our kuleana—our responsibility and privilege—to ensure that the needs of all autistic individuals are met with empathy and understanding, including the needs of the most marginalized autistics.
This sense of kuleana aligns with the wisdom of the late legendary disability rights activist Judy Heumann, who reminded us that "disability only becomes a tragedy when society fails to provide the things needed to lead one's daily life."
Society has a crucial role in dismantling barriers and fostering a world where all individuals, regardless of their abilities, can live fulfilling lives. It means advocating for accessible education, healthcare and medical solutions, housing, care services, employment opportunities, and social inclusion. Embracing our kuleana towards the autism community is about more than just providing resources; it's about fostering an approach that looks at both strengths-based opportunities and challenges-based solutions.
By being open to kuleana, we create a more inclusive world.
- Hari S
(1) Aulani Wilhelm is the Chief Strategy and External Affairs Officer at Nia Tero, an organization dedicated to working in solidarity with Indigenous Peoples. The quote is taken from a May 30, 2024 webinar. Celebrating Conservation, Ocean Justice, and Climate Leadership in the Asian American, Native Hawaiian, and Pacific Islander Community.
(Jun 21, 2024 is Native Indigenous People's day)
In the Hawaiian language, the word "kuleana" embodies a profound concept, combining responsibility and privilege. "Kuleana finds you if you are open to it." (1). This notion can be extended to our approach toward autism, It is our kuleana—our responsibility and privilege—to ensure that the needs of all autistic individuals are met with empathy and understanding, including the needs of the most marginalized autistics.
This sense of kuleana aligns with the wisdom of the late legendary disability rights activist Judy Heumann, who reminded us that "disability only becomes a tragedy when society fails to provide the things needed to lead one's daily life."
Society has a crucial role in dismantling barriers and fostering a world where all individuals, regardless of their abilities, can live fulfilling lives. It means advocating for accessible education, healthcare and medical solutions, housing, care services, employment opportunities, and social inclusion. Embracing our kuleana towards the autism community is about more than just providing resources; it's about fostering an approach that looks at both strengths-based opportunities and challenges-based solutions.
By being open to kuleana, we create a more inclusive world.
- Hari S
(1) Aulani Wilhelm is the Chief Strategy and External Affairs Officer at Nia Tero, an organization dedicated to working in solidarity with Indigenous Peoples. The quote is taken from a May 30, 2024 webinar. Celebrating Conservation, Ocean Justice, and Climate Leadership in the Asian American, Native Hawaiian, and Pacific Islander Community.
Academic Psychiatry Day 2024
Presenting my autism research poster at Academic Psychiatry Day event.
Very happy at how I was able to handle myself. The room gets pretty crowded during the event (which can be overwhelming) and there are numerous people crowded around your poster. And you are expected to be by your poster the entire time.
Alexithymia
Auti Lexicon: Alexithymia
Alexithymia is characterized by difficulty in recognizing and expressing one's emotional experiences. It means having trouble recognizing and describing your own emotions. People with alexithymia often can't tell what they are feeling and find it hard to explain their emotions to others. This can make it difficult to connect with others and share feelings.
Read more at
Disability is both a cause and consequence of poverty
"Disability is both a cause and consequence of poverty.
We're more that 2x likely to live in poverty than non-disabled people"
Disability and poverty are intrinsically linked, creating a vicious cycle that exacerbates the challenges faced by the disabled. This disparity stems from systemic barriers in education, employment, and healthcare. Disabled individuals often encounter limited job opportunities, workplace discrimination, and inadequate support services, significantly hindering their ability to secure stable and well-paying employment. According to the National Council on Disability, these employment challenges contribute heavily to the higher poverty rates among disabled individuals (National Council on Disability, 2017). The lack of accessible education further compounds this issue, as it restricts the skill development necessary for competitive employment.
Moreover, poverty can lead to or worsen disability, creating a continuous loop of disadvantage. Individuals living in poverty often have limited access to healthcare, resulting in untreated medical conditions that can lead to further disability. The financial strain associated with poverty can prevent people from obtaining necessary assistive devices or modifications, further diminishing their quality of life and ability to participate fully in society. The World Health Organization (WHO) emphasizes that this cyclical relationship underscores the need for comprehensive policies and programs that address both poverty alleviation and disability inclusion simultaneously (WHO, 2011). Breaking this cycle requires concerted efforts to create inclusive educational and employment opportunities, enhance social support systems, and ensure equitable access to healthcare and other essential services for disabled people. Investing in these areas not only improves the lives of disabled individuals but also fosters a more inclusive and equitable society, reducing overall poverty and promoting economic stability.
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A plain language version
Disability and Poverty: A Tough Cycle
Disability and poverty are closely connected. This makes life harder for disabled people. Here’s why:
Education: Many disabled people don’t get a good education. This makes it hard for them to learn skills needed for good jobs.
Jobs: Disabled people often face problems finding jobs. There aren’t enough job opportunities, and some employers discriminate against them. Without good jobs, it’s hard to earn enough money.
Healthcare: Poor people often can’t afford good healthcare. This can lead to untreated health problems that cause or worsen disabilities.
Support Services: Disabled people need special support, like assistive devices or home modifications, but these can be expensive. Without money, they can’t get the help they need.
The National Council on Disability says that these problems make more disabled people live in poverty. The World Health Organization also says that we need to solve both poverty and disability issues together.
To break this cycle, we need to:
- Provide better education for disabled people.
- Create more job opportunities and stop workplace discrimination.
- Offer better social support services.
- Make healthcare and housing affordable and accessible for everyone.
When we invest in these areas, we help disabled people live better lives. This also helps reduce poverty and builds a stronger, fairer society for everyone.
2 versions of this post
NSFGRPF in the News
Been 2 months since award. But still good to see article.
https://www.miragenews.com/34-vanderbilt-students-alumni-earn-2024-nsf-1257672/
A total of 34 Vanderbilt University alumni, students and incoming students have been named National Science Foundation graduate research fellows for 2024.The prestigious fellowship program assists exceptional graduate students pursuing research-based master's and doctoral degrees across various fields, including science, technology, engineering, mathematics, STEM education and social sciences supported by NSF. Since its inception in 1952, the NSF GRFP has been a cornerstone of support for graduate students, providing financial aid through a $37,000 annual stipend and a $16,000 allowance for educational expenses, along with opportunities for professional growth and international research endeavors.
Vanderbilt's 2024 NSF GRFP Scholars:
......
Hari Srinivasan, Class of 2027, life sciences - neurosciences
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The rigorous application process demands thoroughness and collaboration with students' advisors, as students craft persuasive personal statements and research proposals. For the 2024 cycle, there were 2,037 fellowship offers in total, which is 518 less than the 2023 cycle. Additionally, in the 2024 cycle there were 1716 honorable mentions, 915 more than in the 2023 cycle.
Weak Central Coherence Theory
PlainSpeak for the Lay Reader
Caveat: There is no single theory that can fully explain autism.
Weak Central Coherence Theory
Definition: The Weak Central Coherence Theory suggests that autistics tend to focus more on details rather than the overall picture. This affects how they see and understand the world around them.
The Weak Central Coherence Theory tries to explain why autistics often excel at noticing details but might struggle with seeing the bigger picture. This unique way of thinking brings both strengths and challenges, affecting everyday tasks, social interactions, and work or hobbies.
Key Concepts
Detail-Focused Thinking:
- What It Means: Autistics are often really good at noticing small details that others might miss.
- Why It Happens: Their brains are wired in a way that makes them pay extra attention to these details.
Difficulty Seeing the Big Picture:
- What It Means: It can be harder for autistics to combine these details into a complete, overall understanding of a situation.
- Why It Happens: The connections in their brains might not work as smoothly to bring all the details together into one big picture.
Examples and Implications
Everyday Tasks:
- Strengths: They might be great at tasks that need attention to detail, like solving puzzles or spotting differences in pictures.
- Challenges: They might find it harder to understand tasks that need seeing the whole picture, like following a story with lots of characters and events.
Social Situations:
- Challenges: In social settings, understanding body language or implied meanings in conversations can be tough because these require seeing the whole context, not just individual parts.
Work and Hobbies:
- Strengths: Jobs or hobbies that require careful attention to detail, like coding or building models, can be areas where they excel.
- Challenges: Roles that need quick understanding of complex, big-picture concepts might be more difficult.
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Intersectional Lived Experiences
I'm grateful for opportunities to listen to diverse and intersectional lived experiences from Autistic leaders. Dennis Tran and Hari Srinivasan - thank you for your advocacy and service to the Autism Society of America! TheConnectionIsYou!
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