Uniquely Hari: Disability

Showing posts with label Disability. Show all posts

Harmony of the Autism Rhythmic Mind

Harmony of the Autism Rhythmic Mind

(Refrain)
In the rhythm of minds, we find our song,
Autism's beat, where we all belong.
Yeah, yeah. Uh-huh.

In minds unique, like constellations so rare,

Autism's mind, it's everywhere.

Questions bloom, in rhythm and rhyme,

Different beats, in every time.

(refrain)

In the tapestry, we find our voice,

A vibrant pulse, our unique rejoice.

Unfolding universes in our mind,

Patterns merge, understanding we find.

(refrain)

Autism's gaze, sincere and deep,

Into mysteries, fearlessly we creep.

In every question, a beacon's glow,

Autism's minds, together, we grow.

(refrain)

Embracing disability, let's learn and flow,

Autism's minds, new insights show.

In the rhythm of thoughts, dreams gleam,

In the poetry of life, we find our dream.

(refrain)

https://www.peasepress.com/product-page/essential-truths-the-bay-area-in-color

Inclusivity Mindset

Inclusivity isn’t a box to be checked, it’s a mindset to be embraced. Let’s approach each day, each decision, with the intent to foster spaces where every individual feels seen, heard, and valued - Victor Pineda

The Complex Terrain of Muscle Contraction - Insights from Disability

(Based on topic covered in Neuroanatomy Class along with some additional disability perspectives. )

In the world of biology, muscle contraction is a fundamental process, enabling us to move and function. The way our muscles contract, however, can lead to various consequences, especially when disrupted by factors like bacterial infections.

Muscle contractions are driven by motor units. Whether the contraction is strong or weak depends on how many of these units are activated. So a fine precise motor action requires small number of units activated and need little strength.

Tetanus, caused by bacteria, takes this natural muscle contraction process to an extreme, forcing every single motor fiber in a muscle to contract simultaneously, causing intense pain that is hard to put into words.

Understanding muscle pain takes us to the basics of cellular respiration. Muscles, like all cells, need oxygen, which is supplied through arteries. When a muscle contracts and restricts this oxygen supply, it creates a problem. The muscle cells continue to function, breaking down glucose in the absence of oxygen. However, this process produces lactate, leading to a burning sensation, indicating the body's distress.

This pain can have severe consequences. In intense muscle contractions, essential muscles like the diaphragm, responsible for breathing, can weaken. Chest muscles may become so tense that they hinder the natural process of inhaling and exhaling.

In the complexity of our body's workings, this delicate balance between muscle contraction and relaxation defines our abilities. Understanding these intricacies not only enhances our knowledge of our biological marvel but also emphasizes the need to appreciate and preserve the balance that allows us to move and function seamlessly.

There exists a parallel narrative, one that often goes unnoticed — the experience of autistics. Consider a autistic whose sensory perceptions are heightened and processed differently. The involuntary muscle contractions experienced by autistics might not only induce physical discomfort but also trigger heightened sensory responses, amplifying the distress. In such cases, the pain isn't merely a physiological phenomenon; it extends into the realms of sensory overload, creating an overwhelming and sometimes unbearable experience.

Understanding muscle contraction through the lens of disability offers profound insights into the human experience. It urges us to delve deeper, to acknowledge the diverse ways in which individuals perceive and process pain. In doing so, we foster empathy and compassion, paving the way for inclusive healthcare practices that cater to the unique needs of every individual, irrespective of their physical or neurological differences.

https://www.dailycal.org/2018/04/12/compulsion-complexity

https://www.peasepress.com/product-page/essential-truths-the-bay-area-in-color

Stims and Multisensory Integration

In the context of multisensory integration, autism stims or self-stimulatory can be understood as a way to manage and regulate sensory input from their environment. Multisensory integration refers to the neurological process where the brain combines information from different sensory systems to form a comprehensive understanding of one's surroundings. For autistics, this integration process can be atypical, leading to unique sensory experiences and responses.

Understanding Stims in Relation to Multisensory Integration:

Compensating for Sensory Processing Differences: Autistics may experience hypersensitivity or hyposensitivity to sensory stimuli. Stims can be a method to either dampen overwhelming sensory input or to seek additional stimulation to compensate for under-responsiveness.
Creating Predictable Sensory Experiences: Repetitive behaviors, such as rocking or hand-flapping, provide a predictable and controllable sensory experience in a world that can often feel unpredictable and overwhelming. This predictability aids in multisensory integration by providing a constant sensory feedback loop.
Facilitating Focus and Concentration: For some, engaging in stimming behaviors can enhance focus and help filter out extraneous sensory information. This self-regulation can aid in better integrating relevant sensory inputs.
Self-Soothing and Emotional Regulation: Stimming can be a way to calm oneself in response to sensory overload. It serves as a mechanism to regulate emotional responses that arise from difficulties in processing multisensory information.
Enhancing Sensory Discrimination: Certain stims may help autistics to differentiate between different sensory inputs. For example, tactile stims like rubbing textures might help in focusing on specific tactile sensations amidst a confusing array of sensory data.
Aiding in Social and Communicative Functions: In a social context, stimming might assist autistics in managing the multisensory complexity of social interactions, such as processing visual, auditory, and spatial information simultaneously.

Implications for Support and Intervention:

(THIS AREA IS STILL NOT WELL UNDERSTOOD & VERY MUCH A WORK IN PROGRESS)

Personalized Sensory Environments: Creating environments that take into account an individual's specific sensory processing needs can reduce the necessity for stimming as a compensatory mechanism.
Sensory Integration Therapy: In theory this therapy is supposed to help autistics develop better skills to integrate and process multisensory information, potentially reducing the reliance on stimming behaviors for sensory regulation. But there is a lot of confusing and conflicting information about what exactly constitutes SIT.
Educational and Behavioral Strategies: Incorporating multisensory learning and behavioral strategies that align with an individual's sensory preferences can enhance their ability to process information from multiple senses simultaneously.

Apraxia Dyspraxia and its connection to autism

Autism is a neurodevelopmental disability characterized by challenges with social interaction, communication, and repetitive behaviors. While apraxia and dyspraxia are not the core features of autism, they can co-occur in autism. The exact reasons for the overlap are not fully understood, but it's believed that shared neural pathways might play a role. And while we don’t know whether all the spoken communication challenges seen in a significant portion of autistics are exactly due to apraxia or dyspraxia, the fact of the matter is that many of us do seem to tick the some of checkboxes of the textbook descriptions of what apraxia and dyspraxia are at an observational level.

For instance, Apraxia is thought to be the result of impact to the part of the brain that plans the movements required to produce speech. You may know what you want to say, but your brain has difficulty in coordinating the muscle movements necessary to say those words. There may be inconsistent speech errors, difficulty in imitating speech and more errors when there are longer sentences or more complex words.

Dyspraxia affects motor skill development. It's not due to muscle weakness but rather a brain-based issue in planning and coordinating movements. So you may struggle with tasks like tying shoes, buttoning shirts, or any activities that require a sequence of movements. Or you might appear clumsy or awkward in your movements when you engage in such tasks.

Again we don’t know if apraxia and dyspraxia by themselves explain all the communication issues seen in almost a third of the autistic population. we don't fully understand how it connects to autism biologically. In other words, we don't know what parts of the brain, neurotransmitters, synaptic connections, and signaling pathways are impacted in those with autism with apraxia and without apraxia. We don't know whether the neurological issues that contribute to someone having autism also predispose them heavily towards having apraxia. Given that 87% of people with autism reportedly have some kind of motor issues, it is highly plausible that they are closely interconnected.

I think its more useful to use broader terms of what is happening with autistics like "movement differences" or "motor difficulties" till we can say on the basis of real science that the primary neurological condition impacting our movement issues is apraxia or dyspraxia.

Importantly, we do know that communication is a huge challenge and there is an urgent need to not only figure out what is going on but also an equally urgent need for translatable solutions.

Stereotype Prejudice Discrimination

Stereotype, prejudice, and discrimination are interconnected concepts that play a significant role in shaping attitudes and behaviors toward individuals or groups based on perceived characteristics such as race, gender, religion, or disability.

Stereotype refers to a widely held and oversimplified belief or mental image about a particular group of people. Stereotypes often involve generalizations and assumptions about the characteristics, behaviors, or abilities of individuals within that group. For example, the stereotype that women are less competent in technical fields is a pervasive belief that can lead to biases in hiring decisions and educational opportunities. Another prevalent stereotype is that challenges in speaking ability (a function of the oral-motor muscles) amongst many autistics must equal low cognitive ability. Stereotypes can be overly positive too (such as all autistics must be tech geniuses) and negative, but they tend to oversimplify and dehumanize individuals by reducing them to a set of assumed traits.

Prejudice, on the other hand, involves a negative emotional or evaluative response directed at individuals or groups based on their perceived attributes or membership in a particular category. It represents an attitude or a set of attitudes characterized by bias, animosity, or irrational dislike. Prejudice can manifest as feelings of hostility, resentment, or fear toward the target group and often results from stereotypes. For instance, a person who holds a prejudice against a certain ethnic group may harbor negative emotions and beliefs about its members, leading to discriminatory behaviors or attitudes.

Discrimination encompasses actions or behaviors that treat individuals or groups unfairly or unjustly based on their perceived attributes or group membership. Discrimination can take various forms, including institutional discrimination (e.g., discriminatory laws or policies), interpersonal discrimination (e.g., unfair treatment by individuals), and microaggressions (subtle, often unintentional acts of discrimination). Discriminatory actions can result from prejudiced attitudes or stereotypes and can have serious consequences, such as limiting opportunities, perpetuating inequality, and causing harm to individuals' physical and mental well-being. Addressing discrimination involves efforts to promote equality, enforce anti-discrimination laws, and challenge biased attitudes and behaviors in society.

Understanding these three concepts—stereotype, prejudice, and discrimination—is essential for addressing social and systemic issues related to inequality and bias. It is crucial to recognize the role these concepts play in shaping individual and societal attitudes and to work toward creating a more inclusive and equitable world where individuals are judged based on their unique qualities and contributions rather than on stereotypes or prejudiced beliefs.

https://www.dailycal.org/2018/04/12/compulsion-complexity

https://www.peasepress.com/product-page/essential-truths-the-bay-area-in-color

The Problem with DEI

DEI initiatives often assume that if you open the door, targeted people will automatically rush in. But these targeted population were told for so long that this door did not belong to them, or that its too hard for them, you are not intelligent /capable enough; if this has been the messaging of the last 100 years, there is going to be unconscious bias, where part of you starts believing this to be true (like when women are told prior to a math test, that women are bad in math, they end up doing worse on the test than if not told that info).

So the initiative has to be both opening the door and also nudges from other end saying, you can do this, we welcome you and will work to support you, demystifying the process of what the door is and how to go about even approaching that door.

And why don't DEI initiatives automatically include disability or when disability is included, its often as an afterthought when its pointed out that its probably not PC to exclude. Why is disability not recognized as a very very historically marginalized group at the onset. The fact of a childhood disability for instance means the exclusion starts in childhood itself which perpetuates and intensifies the exclusion as you age. (Somehow the fact of disability transcends even the color of your skin and you are pushed to the bottom of the food chain).

Stimming in Autism - The Why and What

Stimming, a common behavior in autistics, encompasses a variety of sensory and motor actions.

Types of Stims

Self-Stimming

Visual: Triggered by or seeking lighting change - including flicking fingers in front of eyes, staring at ceiling fans, and repeated blinking.
Auditory: Manifest as tapping on objects, snapping fingers, replaying songs, humming, repeating words or sounds, and tongue clicking.
Olfactory & Taste: Involving smelling objects (even unpleasant odors), eating non-food items like paper, and licking body parts.
Tactile: Such as rubbing skin.
Vestibular & Proprioceptive: Including rocking, toe-walking, pacing, jumping, rolling, spinning, and throwing objects.

Self-Stims leading to Self-Injurious Behavior (SIB)

Actions like head banging, biting one's own wrist, and excessive skin rubbing that can cause tissue damage.

Stimming on Objects/Activities:

Lining up objects (e.g., lining up toys)
Creating specific patterns with objects, rejecting all other arrangements.
Spinning wheels on toys. Looking at the ceiling fan spinning.

Why do autistics Stim? Stimming behaviors can serve various purposes, such as:

Reducing anxiety and calming oneself.
Aiding in sensory and emotional regulation.
Self-soothing, communicating, experiencing excitement.
Coping with overstimulation or boredom.
Avoiding tasks or seeking attention.
Stimulating senses
Expressing frustration, particularly in those with communication challenges.
Easing pain or discomfort
Could be indicative of seizure activity.

Differences Between Autistic and Non-Autistic Stimming:

The irony is that neurotypicals stim all the time too like the endless clicking of the TV remote, doodling, chewing the end of a pencil or pen, drumming fingers etc. NT stimming are regarded as "socially acceptable"

Autistic stimming often differs in its intensity and ability to be moderated/changed/stopped according to the situation.

How much stimming is too much:

While some level of stimming can be calming, crossing a certain threshold may lead to behaviors resembling Obsessive-Compulsive Disorder (OCD), further inducing anxiety.
What might a mild, controllable/adaptable habit in an non-autistic, could become an unmanageable compulsion in a non autistic.

Stimming in autism is a multifaceted behavior with various forms and functions. Understanding these behaviors is crucial for providing appropriate support and interventions. It's important to recognize the individual needs and experiences of each person with Autism, as stimming serves different purposes and requires a tailored approach in each case.

Stimming is not soothing

I wish folks stop saying stimming is soothing.

Stimming is soothing only upto a point. It quickly crosses over into OCD and is exhausting, mentally and physically draining, caught in this behavioral loop you cannot get out of.

My Op-Ed in Fortune on Hybrid as Accommodation

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/

Feedback on this article

Well said! I think you bring up important factor of hybrid work environments. I think that due to the pandemic and the proof that hybrid works and happens. I think a strong argument could be made for hybrid a ‘reasonable’ accommodation.

Hari! Great article highlighting an important issue that is impacting workplaces and activities like conferences nationwide. I will share with colleagues who are working on this issue.

Well done, again!

Wonderful article, Hari! Thank you! I shared it with my husband, who is a business owner and has chosen to keep the company remote post-pandemic. And I shared it with my son, who is a neurodiverse activist who has many friends with a range of neurodiversities. Really appreciate you publishing your perspective.

Love it

This is great Hari! We'll add this to our social media queue.

Congrats on this outstanding, informative op-ed!

Great article, congratulations!

Congrats on this compelling piece of advocacy! I've just tweeted about it.

Fantastic piece, Hari. I love your openness—I learn so much from your writing.

Hi Hari, Great article on an important topic that’s very relevant to all of us nowadays!!

Great Op-Ed Hari! It’s super interesting and compelling!

Congratulations, Hari! -- your piece raises so many important issues

So helpful to reframe return to inperson as part of lost opportunity to consider accommodations for autistic and disabled plus many vulnerable groups (parents!)

Congrats Hari! Great perspective and what a fantastic platform to share it in.

Congrats and great to see this piece published!

Hari, Bravo! What an honest op-ed that not only highlights the hybrid versus remote debate but also voices the predicament that academics/researchers with disabilities experience with travel and dissemination of their work.

This is such a thoughtful piece, Hari. Thanks so much for sharing it.

This is GREAT. Bravo.

Great article!'

Thanks so much for sharing Hari - an important article

Hi Hari!. Congrats on this compelling piece of advocacy! I've just tweeted about it.

Hi Hari, Congrats on this outstanding, informative op-ed! All the best,

Thanks for sharing this good paper.I love it

Love it

Thanks so much, for sharing this, Hari! Great article highlighting an important issue that is impacting workplaces and activities like conferences nationwide. I will share with colleagues who are working on this issue.

Thank you so much for writing this, Hari

Social Media Mentions

https://www.psychologytoday.com/us/blog/giving-voice/202307/dignity-remains-elusive-for-many-disabled-people

Psychology Today Article.

https://www.psychologytoday.com/us/blog/giving-voice/202307/dignity-remains-elusive-for-many-disabled-people

Looking at the Self

In the context of disability and autism, all the terms discussed below takes on a unique significance as individuals may grapple with challenges that affect their physical, cognitive, emotional, and social attributes. Understanding one's own abilities, limitations, and unique traits can be an integral part of developing a positive self-perception and fostering self-acceptance and empowerment within the disability and autism communities.

Self-Perception: refers to how we perceive themselves, including our physical, cognitive, emotional, and social attributes. It involves forming an understanding of one's own characteristics, abilities, and behaviors. Self-perception can encompass both internal aspects, such as thoughts and emotions, and external aspects, such as appearance and social roles. It involves recognizing oneself as a distinct entity separate from others and the environment.

Self-Reflection: involves the process of introspection and examining one's thoughts, feelings, and experiences. It entails looking inwardly and exploring one's own inner world. Self-reflection allows individuals to gain insight into their beliefs, values, motivations, and behaviors. It often involves asking oneself questions, considering personal experiences, and analyzing one's own actions and their consequences. Self-reflection facilitates self-understanding, personal growth, and the ability to learn from past experiences.

Self-Evaluation: refers to the process of assessing one's own abilities, performance, and worth. It involves comparing oneself to internal or external standards and making judgments about one's strengths, weaknesses, and accomplishments. Self-evaluation can be influenced by various factors, including personal goals, social comparisons, and feedback from others. It plays a crucial role in shaping self-esteem, as positive self-evaluation can enhance feelings of self-worth and competence, while negative self-evaluation can lead to self-doubt and low self-esteem.

Self-Awareness: is the conscious knowledge and recognition of one's own existence, thoughts, feelings, and sensations. It involves being cognitively and emotionally attuned to oneself. Self-awareness allows individuals to monitor and reflect upon their own internal states, behaviors, and reactions in relation to themselves and their environment. It involves recognizing one's own strengths, weaknesses, values, and beliefs. Self-awareness is a fundamental aspect of self-consciousness and is essential for introspection, self-regulation, and social interactions.

NASEM: Cultivating Accessible Educational Pathways and Spaces

Event by National Academies of Sciences, Engr and Medicine.

Disrupting Ableism and Advancing STEM:

Cultivating Accessible Educational Pathways and Spaces

THURSDAY, JUNE 15, 2023,

I was on the the panel that runs from 1:35pm ET - 2:15pm ET

Recording link

"This virtual session is a critical element of Disrupting Ableism and Advancing STEM: Cultivating Accessible Educational Pathways and Spaces, the fourth event in the five-part Disrupting Ableism and Advancing STEM conversation series. Overall, this event in the series will focus on the important role of education in preparing students with disabilities as they enter the STEM ecosystem. Discussions will focus on the need to challenge assumptions about who can learn and succeed in STEM and the need to make direct changes to policies and practices to facilitate positive educational experiences for students. Examples will include asset based approaches to learning in classrooms, laboratories, online, and in the field.

Got a nice feedback email today.

"My name is ____ and I work at a medical university in a northern town in ___Ontario Canada. I saw your presentation today on cultivating accessible educational pathways and spaces. I was completely blown away by your presentation. What you have accomplished is incredibly impressive. I not only applaud you but the professors who went out of their way to make labs accessible for you. I think as a medical school, we are behind the ball so to speak with regards to accommodating the needs of those with different abilities....... This entire series has been fascinating to me. Thank you for sharing."

====

On behalf of the planning committee, I want to thank you for being part of the NASEM Disrupting Ableism and Advancing STEM discussion series.

This event was very well received, and your panel’s discussion was truly fantastic. Thank you for your leadership and for taking time to share your insight and expertise.

It feels like a historic and meaningful inflection point for people with disabilities in STEM, and we are grateful for your role in driving that change.

======

On behalf of the planning committee for the Disrupting Ableism and Advancing STEM conversation series and the National Academies staff, I wanted to express my sincere gratitude to each of you for an informative and engaging panel session. We are proud to have brought together such an amazing group of individuals to speak about Lived Experiences: Listening, Learning, and Acting. I am certain that your discussion was greatly appreciated by the over 320 who attended on June 15th to learn about issues related to Cultivating Accessible Educational Pathways and Spaces.

Your expertise and insights were invaluable, and we are so grateful for the time and effort that you put into preparing and delivering your remarks.

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Media Mention

The need for global solutions. Disability is not an american phenomena.