Loved your talk Hari! Couldn't agree more about how much needs to change!
Monotropism and Special Interests - what you need to know
In plain language for lay audience
When we talk about autism, two important ideas often come up: monotropism and special interests. These ideas help explain how autistic people focus on things they love, but they mean slightly different things.
Monotropism is a way of thinking that means autistic people tend to focus really hard on a few things at a time. Imagine being able to dive deeply into something you’re really interested in, like a favorite hobby or subject. This can make autistic people very knowledgeable and passionate about their interests. But it can also make it tough to switch focus to other things they find less interesting.
Special Interests are those specific things that autistic people get really excited about. These can be anything from dinosaurs to trains, from art to computers. These interests often last for a long time and can bring a lot of joy and comfort. They’re a big part of who they are. Sometimes, though, other people might not understand why these interests are so important to them.
So, what’s the difference? Monotropism is about the way autistic people focus their attention, while special interests are the actual things they focus on.
Scientists think that the way autistic brains work makes this deep focus possible. It’s not just a quirky behavior – it’s how their brains process information. This means autistic people often put a lot of mental energy into their favorite things, which can make it hard to deal with tasks they don’t enjoy as much.
By understanding monotropism and special interests, we can better support autistic people. We can appreciate their focus and passion while also helping them with strategies to manage tasks they find challenging.
Two Versions of this post
Research headed to SfN 2024
My research abstract accepted at Society for Neuroscience, SfN 2024 conference.
Dear Hari Srinivasan
Thank you for submitting a Scientific Abstract for Neuroscience 2024 taking place Oct 5-9 in Chicago.
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For more on my conference experience in Oct click on the link below
Understanding the E - I Imbalance Theory of Autism
In PlainSpeak for the Lay Reader
Caveat: Always keep in mind there is no single theory that perfectly explains autism. The Excitatory-Inhibition (E-I) Imbalance idea says that a mix-up between signals that excite and calm the brain can cause the sensory, thinking, and behavior issues in autism.
What Can Cause the E-I Imbalance?
Too Much Glutamate and Overactive Exciting Neurons
Glutamate is the main chemical that makes brain cells more active. If there is too much glutamate or the exciting neurons are too active, it can make the brain overly excitable. This can cause people with autism to be very sensitive to sounds, lights, and other sensory inputs and make thinking and processing information harder.
Not Enough GABA to Calm the Brain
GABA is the main chemical that calms brain cells. In autism, there can be less GABA, problems with GABA receptors, or less active calming neurons. This means the brain doesn’t have enough calming signals to balance the exciting ones, making the E-I imbalance worse.
Problems with Exciting and Calming Neurons
Neurons are the cells in the brain that send and receive signals. Exciting neurons make other neurons more active, while calming neurons reduce activity. In autism, there might be differences in the number, function, or connections of these neurons. For example, changes in certain calming neurons can disrupt the brain’s local circuits, leading to more excitement and less calming.
Important Development Periods
The E-I balance is especially important during key development times when the brain is growing and changing rapidly. If the balance is off during these times, it can affect brain development and function in the long term. This can impact learning, memory, and the formation of proper brain connections.
Changes in Synaptic Proteins
Proteins like neuroligins and neurexins help brain cells stick together and send signals. In autism, changes or problems with these proteins can lead to abnormal connections between brain cells, affecting the E-I balance.
Ion Channel Problems
Ion channels help neurons send signals by letting ions in and out. Ions are tiny charged particles, like sodium, potassium, or calcium, that neurons need to function properly. In autism, problems with these ion channels can change how neurons send signals, affecting the E-I balance.
Problems with Synaptic Plasticity
Synaptic plasticity is the ability of connections between brain cells to get stronger or weaker over time. This is important for learning and memory. Long-term potentiation (LTP) is when these connections get stronger with activity, helping with learning new things. Long-term depression (LTD) is when these connections get weaker, which helps remove unnecessary information. In autism, problems with LTP and LTD can make it harder to learn and remember things.
Role of Supporting Brain Cells (Astrocytes and Microglia)
Astrocytes and microglia are supporting cells in the brain that help maintain E-I balance. Astrocytes manage levels of glutamate and GABA, while microglia help prune synapses during development. Pruning is like trimming a tree; it removes extra connections between brain cells to make the network more efficient. Problems with these cells can lead to too much excitation or not enough inhibition.
Genetic and Epigenetic Factors
Our genes, which are like instructions for how our body works, can influence the E-I balance. Changes in how these genes are turned on or off can also affect the brain. Many genes linked to autism affect how brain cells connect and communicate, leading to differences seen in autism.
Environmental Influences
Things in the environment, like exposure to toxins, infections, and stress during pregnancy, can impact the E-I balance. These factors can change how the brain develops and works, leading to long-term effects on brain signals.
- 2 versions of this post:
- For the Scientific/Academic Audience
- PlainSpeak / Plain Language for the Lay Reader
Predictive Coding Theory of Autism
Predictive coding is a theoretical framework in which the brain is modeled as a hierarchical system that generates predictions about incoming sensory data, constantly updating its internal models to minimize prediction errors. Autism, in the context of predictive coding, is hypothesized to involve atypicalities in how the brain generates, updates, and weights predictions and prediction errors, contributing to sensory sensitivities, repetitive behaviors, and social difficulties.[Read in more detail]
PlainSpeak: Predictive coding is the idea that the brain works like a prediction machine, guessing what’s going to happen next and adjusting when something unexpected happens. Autism might involve the brain having a harder time making and adjusting predictions, which can lead to challenges with senses, routines, and social interactions. [ Read in detail. PlainSpeak Version]
Read in More Detail about Predictive Coding Theory of Autism
For the Scientific/Academic Audience
PlainSpeak Plain Language for Lay Reader
This is pretty horrifying to read
All kinds of trigger warning for this post.
https://www.newschannel5.com/news/newschannel-5-investigates/tennessee-dcs-sued-for-abuse-violence-against-children-with-disabilities?utm_source=maropost&utm_medium=email&category=homepage-showcase&utm_campaign=WTVF-Newsletter-Headlines
A new angle
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.
Versions of this post
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
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