Showing posts with label Reflections. Show all posts
Showing posts with label Reflections. Show all posts

Breaking Free from Popular Opinion

Opinions can guide us gently like a tranquil sea or be as destructive as a tsunami. Our ability to discriminate between beneficial and harmful opinions is crucial. By staying open to new possibilities instead of blindly following popular opinions, we pave the way for a more productive and satisfying life. 

In today's world, we are inundated with opinions from all sides. However, it is crucial that we do not allow these opinions to unduly influence our thinking. Often, opinions reflect the views of influential individuals or groups, but influence does not equate to correctness. It takes courage and conviction to think independently and not simply follow the crowd.

In the autism space, well-meaning professionals continue to adhere to misconceptions.  For example, just over two decades ago, it was believed that children diagnosed with autism would inevitably end up institutionalized. Parents were advised to send their children away before they grew attached, under the misguided belief that autistic children could not reciprocate affection, show emotions, think rationally, or learn meaningfully. Even now, the autism space is flooded with misconceptions. And the more impacted an autistic is, the more entrenched is the misconception about their capability and inclusion. 

But the fact of the matter is that NO ONE is an expert on autism, even those who may have extensive credentials or degrees. Else we would have seen many autism solutions by now, instead of just more 'experts' with degrees.

This does not mean that all opinions are harmful. Like the sea, they can be tranquil and beneficial or destructive like a tsunami. The human mind has the capacity to discern between constructive and destructive opinions. By being open to new possibilities rather than blindly following prevailing opinions, we can navigate our way to a more productive and fulfilling life



History is full of examples where prevailing opinions were challenged. Gandhi’s unique non-violent approach not only led to India's independence but also inspired leaders like Martin Luther King Jr. and Nelson Mandela. Galileo's heliocentric views were condemned yet, Stephen Hawking says of him, “Galileo, perhaps more than any other single person, was responsible for the birth of modern science.” Consider Hippasus, who discovered irrational numbers and faced death for challenging the belief that all numbers could be expressed as ratios of integers. His discovery was so shocking to the Pythagoreans of his time, that they allegedly drowned him. This tragic story illustrates the resistance that change can face when they challenge deeply held beliefs.

The people we admire and respect—those who have changed the world—often chose to defy conventional wisdom. The Wright Brothers did not accept the belief that man could not fly, and Thomas Edison persisted with his inventions despite skepticism. A mind free from the constraints of prevailing opinions is more open to possibilities, leading to creativity and discovery.







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.

Uncertainty and Autism - A Quantum Perspective

The uncertainty principle in quantum mechanics, introduced by Werner Heisenberg in 1927, teaches us that we cannot simultaneously know both the exact position and momentum of a particle. This concept revolutionized our understanding of the physical world, highlighting the inherent unpredictability in nature. Interestingly, it also offers a useful metaphor for understanding autism.

Complexity and Variability: Embracing the Uncertainty

Autism, like the quantum world, is complex and resists rigid categorization. Autistics experience and interact with the world in diverse ways, challenging traditional views. Understanding autism requires recognizing both strengths and challenges, and embracing the uniqueness of each individual while remaining aware of the real difficulties they may face.

Probabilistic Understanding: Flexibility in Approach

The uncertainty principle leads to a probabilistic approach in quantum mechanics, and similarly, supporting autistic individuals effectively requires flexibility. This means balancing strengths-based opportunities that highlight unique abilities with challenges-based solutions that address difficulties like communication barriers or sensory sensitivities or underlying medical issues. Acknowledging this diversity fosters better understanding and support.

Challenging Classical Conceptions: Embracing the Full Spectrum of Autism

Just as the uncertainty principle challenged classical physics, a more inclusive understanding of autism challenges traditional perspectives. Embracing the full spectrum of autism means valuing all individuals, including those who require significant support, and recognizing that their experiences contribute to the richness of our shared human experience. It also involves assuming capability, even when it might not be immediately apparent, and respecting each person’s potential. However, it also means being realistic about the challenges these individuals face and working to provide the necessary support to help them thrive through challenges-based solutions.

Technological and Methodological Advances: Innovation Inspired by Autism

The uncertainty principle spurred technological breakthroughs, and similarly, a balanced understanding of autism can inspire innovations in support strategies. These advancements should harness strengths-based opportunities while also addressing challenges to ensure all autistics have the tools they need to thrive.

Broader Implications for Reality: Rethinking Normalcy

The uncertainty principle reshaped our understanding of reality, and embracing the full spectrum of autism challenges assumptions about what is "normal." By addressing challenges with challenges-based solutions and valuing contributions through strengths-based opportunities, we can build a more inclusive and understanding society.

Refocusing the Autism Conversation: Beyond Terminology

Refocusing the Autism Conversation: Beyond Terminology

In his insightful book The Brain Inside Out, György Buzsáki highlights a significant challenge in scientific discourse: the tendency to create new terminology in an attempt to explain complex phenomena. He shares his frustration, echoed by his mentors, that these "filler terms" often obscure the true nature of the mysteries they aim to unravel. This practice can mislead readers into believing that a mechanism has been identified, when in reality, it remains elusive.

This phenomenon is particularly relevant in the field of autism, where debates over terminology often overshadow the more pressing goal of finding solutions. The discussion around whether to use "person with autism" or "autistic person" is a prime example. While language is undoubtedly important, the energy spent on these debates could be better directed towards understanding and addressing the needs of autistic individuals.

The focus should shift towards practical outcomes and real-world solutions. Instead of getting caught up in linguistic nuances, we should prioritize research that improves the quality of life for autistic people. This includes exploring interventions that address sensory processing differences, finding biomedical solutions to pressing health concerns, developing educational strategies that support diverse learning styles, lowering cost of support care, and creating inclusive environments that accommodate a wide range of abilities.

Buzsáki’s critique of explanatory terms serves as a reminder to the autism community: let’s not lose sight of our primary objective. By moving beyond terminology debates and concentrating on tangible solutions, we can make meaningful progress in enhancing the lives of those on the autism spectrum.

Impact of language choices in scientific publication on representation of autistic researchers.

The impact manifests in several key ways.

  1. 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.
  2. Bias and stigma. 
  3. Representation. Who is getting left out and who is getting included. 
  4. 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.
  5. Ethical considerations. Engaging the autistic community ensures that scientific discourse does not inadvertently marginalize or misrepresent groups.
  6. 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.




The end of Autism Month

April is Autism Acceptance Month.  

On April 30th there is a flood of emails and social media posts -  all pointing to the fact that its the last day of autism acceptance month. 

Does this mean that autism acceptance is not important for the remaining 11 months? 😔


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.

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. 

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.
  1. Autistic insights through a nuanced understanding of autistic experiences that cannot be fully captured by observation or second-hand accounts. 
  2. 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. 
  3. Increased relevance and application towards practical and relevant issues. 
  4. Empowerment and representation as autistics in leadership, challenges traditional narratives of them only being research subjects. 
  5. Reducing bias in data interpretation from a neurotypical lens. 
  6. Building trust among autistic participants that this research is likely to be ethical and beneficial.  
  7. 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.

Solutions not more talk or more labels

I would like to see ACTION on ACTUAL SOLUTIONS - communication, biomedical physiology (physical/mental health), sensorimotor, policy, funding, myriad equity of access issues. Level the playing field so that ALL autistics can make use of opportunities. Thats quality of life.

Simultaneously reclaim and destigmatize existing labels so they can’t be used against you, instead of airtime and resources creating more and more new labels /terminology and then more airtime arguing about which is good/bad.

Cognitive dissonance on ADOS


I was in an ADOS training this week. I can kind of get at the intended usefulness of this instrument. Its a screening and diagnostic measure that is widely used for Autism.

But disappointed at a few things that caused a lot of cognitive dissonance for me.

Video of kid who repeated back 2-3 words of one question of the clinician before responding - behavior marked as “echolalia”. But NT folks do this all the time, eg: common tactic in interviews as it buys you time to think. In the NT world this is called "active listening" Yet given as a negative label of echolalia in an autistic child instead of useful social strategy.

"Severe autism has reduced in the last 40 years." Not accurate!! It's just that autism includes many other dx since DSM-V and expanded to accommodate all ages, resulting in a bigger pool, so obviously that %severe looks smaller.

The type of ADOS module used depends on the oral level of the child. Module 1 is the one used for non-verbal/ minimally verbal kids.  Seemed to imply that oral communication mandatory for ADOS, cannot be coded if child uses AAC.

Justification given is that use of AAC means
  • "It changes nature of eye contact." 
  • "Are they modulating eye contact in some way"
  • "It changes the nature of what is happening." 
  • They are not making eye contact when they are looking at device.
  • They are not doing social engagement with you while looking at device
  • There may be some pre-made phrases on device they are making use of
Seems like a fundamental problem if you run the module 1 on a child but say , oh by the way, you can’t communicate unless you can talk with your mouth. 

So my question was whether ADOS then is not applicable to the 20-30% of autistics who have no to little spoken language.

Apparently ‘gestures’ are allowed but how much can you communicate with gestures unless you are fluent with ASL. And it is likely that kids with oral communication issues usually also have motor apraxia so their gesturing ability will not good as well.

Related Posts





If you know everything, you are not learning

 Something Professor Carissa Cascio shared with the lab today. So appropriate. 


Also accompanied by a message encouraging us to "be confident in asking questions and not worried about what they don't know. If you already know everything, you're not learning!"

Thank you for this assurance cuz my rather atypical educational path leaves me wondering (more often than not) if there are things I have missed out (through the typical NT education path,  NT social experiences/interactions/networking) which is now maybe impacting my knowledge and work. 



Crip Time needed anon

I've been feeling the need for Crip Time a lot recently. This semester has been rather grueling in terms of what needs to get done in a given time, and keeping up with my non-disabled peers and feeling productive.

[What is CRIP TIME ]
[related Post: AUTISTIC BURNOUT]

Autism Solutions Month


We are way beyond talk of Awareness, way beyond talk of Acceptance, way beyond talk of Inclusion

We need TRANSLATABLE SOLUTIONS that actually assists us.

And we need it now. 

I'm calling April,  AUTISM SOLUTIONS MONTH





The politics of studying the brain

I learned a little bit about the politics of research during a conversation with a professor, for instance researching the dopaminergic system belongs to people studying strictly study movement disorders. 

Which is a real pity really. I have wondered why that is not looked at in the context of autism. Its like the two are never considered together for autism. But disabilities like autism have so many areas involved. Like challenges in movement, is such a critical piece for autistics like me, and worth investigating. How else will we get to solutions.  

Fidget Stim Toys and Autism

Many autistics have sensory processing difficulties and may be hyper- or hypo-sensitive to environmental stimuli. 

Fidget stim toys (eg: stress balls or fidget spinners) have been associated with autism.

Do Fidget toys help ALL autistics? The answer may surprise you.

Research and the Testable Autistic

A fundamental issue in autism research is that again and again we are testing only a narrow band of "testable autistics." 

Essentially past and current research on Autism is oversampling the same ~30% of autistics, the testable autistics. Then we assume the results apply to all, when they do no. 

I was in a research stakeholder meeting last week where another autistic talked about the variety of different research studies she had participated in over the years. 

I was thinking of how many autism research studies where I've been a participant - it was ZERO, literally!! It was not that I did not want to, I was always in the exclusion criteria zone even in autism research. 

Growing up, I used to hear about what autistics are supposed to be thinking/doing, all based on the hundreds of studies that had already been done. And the thought was -  the results don't reflect me. Do I have the wrong dx?

We badly need to RETHINK RESEARCH METHODOLOGY along with new NEW TECHNOLOGY , so that we can expand this ZONE OF TESTABLE AUTISTICS so it's more representative of even those with high support needs like me. 

We can expand the range of testable autistics only if we use methods that don’t need fluent oral communication or fluent motor manipulation or expect a person to sit absolutely still. 

We need every neurodiverse/neurotypical mind thinking about this!!

So, what kind of methods can we use to extend the range of testable autistics.

We need to find answers and solutions for all autistics. THIS IS URGENT. 



Multilingual and Autism

Multilingual and Autism

Therapists often tell families to only speak English so as to not confuse the autistic child. I think that's not a good idea as it results in a loss of cultural identity. During my elementary years there was so much time spent on teaching me St Patrick's day (what relevance do green men and rainbows have for me) instead of say teaching me about Diwali (more relevant to me). Many of us have extended family who only speak their native tongue. Life exists outside of the special education classroom and therapy. 

Autism loves to get stuck on sameness, so you may be inadvertently encouraging that very thing. For instance, in my early years - I used to watch Thomas the Tank engine pretty obsessively. I would avoid the Ringo Starr narrated version but loved the George Carlin version - the Brit accent felt like an alien foreign language. 

It's good to also be exposed to different accents associated with the different languages for another important reason. We will be be surrounded by caregivers/educators with diff accents. No one thinks about this aspect. 

I had a class aide in elementary who's accent I never understood. She was a new immigrant who was barely learning to speak English herself and I just could not make out her high pitched accent. It was not due to cognition on my part, how could I respond if I have not understood the question/instruction which as far as I was concerned was in an alien language.  Sometimes I would try to watch her lips, trying to synchronize the visual of her lip movements with the audio I was hearing - it was a lot to process and it was often easiest to give up and engage in stimming behaviors (comforting) instead. Rather ironical as she was supposed to be teaching me. No one thinks about this aspect. 

Anyway, I did get over the Ringo Starr thing eventually. Interestingly, the accent thing is not so striking in singing. I love Beatles music (simple lyrics that you can actually get your mouth around) and i did not realize Adele was Brit till i saw her talk at an awards ceremony.

Love Each Other

An Apt message for the Times @Albany Waterfront Trail




The Albany Waterfront Trail meanders behind the Golden Gate Fields Racecourse in Albany, CA and hugs the bay as it stretches to a little strip of land, simply known as the “Albany Bulb.” It’s a chance to see the Bay Bridge on one side and the Golden Gate Bridge on the other, even as the sun sets over the silver ocean at dusk. Nature and the universe continue to shower their infinite love upon all us humans living on this beautiful planet that we call home.

As I was ambling along the trail, I came across this sign painted on a wood bench:

“Love Each Other, Wear A Mask.”

It is such a simple statement, just six words, yet profound in its own way. We live in a time of global pandemic due to the spread of a new virus that we have not yet quite understood, and wearing a mask seems like a very simple ask. Do we not wear shoes to prevent harmful microbes on the ground from entering through the skin on our feet; it's not foolproof, but it gets the job done for the most part. And, it’s not uncommon for us to wear a mask when we catch the common cold so we don’t spread the cold to others or when we have the flu; both of which are viruses too. Given that COVID-19 is a respiratory airborne virus, it seems logical that we wear a mask to cover our nose and mouth. It is not just about protecting yourself but also being mindful of protecting those around you.

But what is even more timeless, is the first part of the statement, “Love Each Other.” We all witnessed the hoarding of toilet paper and panic buying earlier this year as soon as the Pandemic began. But during this time of global crisis, we also saw unprecedented levels of altruism, generosity and kindness towards strangers across the world. We had almost reached a state of “Agape,” the Greco-Christian term for unconditional love of our fellow human beings or the Sanskrit “Metta;” in transcending consideration of the self into seeking what’s best for others.

It turns out that humans are innately built for love, goodness, kindness and compassion.

So how do we consciously move towards this state so that this innate goodness becomes a part of our everyday existence?

In my class on “Basic Issues in Cognition” at UC Berkeley, we learned that loving kindness actually begins by developing acceptance towards oneself, and if there was resistance, it usually indicated feelings of unworthiness. If you cannot love yourself, you are an empty cup with nothing to give to others.

Professor Davina Chan led us through a simple loving kindness exercise, which can be practiced daily for a few minutes.

Start with Loving Kindness towards yourself by repeating.

May I be happy
May I abide in well-being
May I be secure
May I dwell in safety.

This warmth is then directed towards others, first to people you care about then extended to acquaintances, strangers and even those you regard as enemies.

Regular practice of simple actions can thus lead to an avalanche of profound change within ourselves and the world. The wood bench on the trail, sums it up - “Love each other. Wear a mask.”

Let us begin today!



This post appeared on the neuronav website where I was a communications intern.  https://uniquelyhari.blogspot.com/2020/10/love-each-other-wear-mask.html


Vagaries of English Phraseology: Journey of An Autistic through GrammarLand


from 
https://www.dailycal.org/2019/04/07/vagaries-of-english-phraseology-a-personal-essay/

Vagaries of English Phraseology: Journey of An Autistic through GrammarLand


My introduction to the world of academics was rather late, since I learned to communicate via typing for the first time in my life only after I was a teenager. I was stuck in a silent, non-communicative world of autism until then.

My first attempts at typing were, at best, fragments. The focus was communication for this nonspeaking boy with autism. I’d never had conversations with the outside world before. I was as excited as a toddler just learning to speak. No one, least of all me, cared for the things called “punctuation,” “grammar” or “semantics.”

There would be odd spaces, words that ran together, an occasional comma or period, sentence fragments and all. Bursts of thought came gushing out and it was important to get the key words out rather than worry about a well-structured sentence. My impulsive and hyperactive body did not make for smooth typing either. My finger would accidentally hit the caps lock key and a few uppERcase letters would appear in the middle of the word as I slowly typed.

No one, least of all me, cared for the things called 
“punctuation,” “grammar” or “semantics.”

But communication was opening up my world, so I didn’t quite care. And when I started typing short pieces and poems, it was all in lowercase.

You see, using uppercase involved the use of two fingers: one on the shift key and the other on the letter key. But I was a one finger typer — a lone index finger on my right hand roamed the QWERTY keyboard, searching for and hopping slowly from letter to letter.

I soared in the power the written words afforded me. My written word substituted the spoken word. People never said pause or comma when they spoke so I figured I need not worry.

With the ability to communicate came the expressed longing for education. When the transition from special education took place, I leapt into eighth grade mainstream academics with anticipation and glee — straight into the arms of Shakespeare, algebra and biology.

An unexpected side of pedantics then reared its head — there was demand for these things called “grammar” and “punctuation.” Grammar was hardly the thing to teach in my former special education world. In special education, I was thought capable of only learning C-A-T spells cat and D-O-G spells dog, and single digit addition like 8+2 = 10.

My mind wrapped around a whole host of new terminology that was part of mainstream academics. Bits of sentences linked to grammar terms, however, simply had no relevance for me.

Grrr!  Gerunds were strangers that growled at me.
Modifiers dangled for some reason.
Mood was an imagined subjunctive
instead of happy every season.
Why were the verbs tensed?
I told them, don’t stress, just meditate.

“Is language not something to enjoy, rather than to be dissected like a frog?” I moaned. Did we have to reduce a sentence to a string of grammar terms?

Bursts of thoughts flow from the brain
Authority insists, must confine to rules
Macrocosm bound by microcosm chain
Drown in grammar phraseology
Lost in punctuation terminology

Essays needed punctuation and spell check; it was mandatory. I needed to bring my other index finger into play to hold down that shift key. Even punctuation like the lowercase comma had their issues. 

Sometimes the Oxford comma was needed by the teacher and at other times, it was a no-show. I wondered if the poor comma made the journey from Oxford, England to the Bay Area each time it was needed.

Word processor spell checks somewhat came to my rescue. I enjoyed the composition, literature and vocabulary parts of English.

but grammar terminology —
— definitely, not in my list of graces.
In a strange new world I was navigating.

It was in an American literature class that I first met e e cummings. The first poem I read by him was “in Just-.”

His poetry confounded me. A first glance, I sat up and wondered, “IS THIS WRITTEN BY A BOY WITH AUTISM — with poor fine motor ability like me? He uncapitalized, words ran together, there were white spaces and a general lack of punctuation. I was baffled and nonplussed, absolutely fascinated. I gaped and stared at the poem on the page.

What was going on and who was this person?

How did such a poem by a person with fine motor challenges make its way into my school textbook?

I soon discovered that e e cummings was a famous poet who intentionally decried grammar convention and punctuation. Even his name was all lowercase. No one had liked him initially, so he had to self-publish. But his unconventional style ended up being much admired by generations of critics thereafter.

There was meaning in his very lack of punctuation 
which gave me a lot of courage. Maybe I need not conform.

There was meaning in his very lack of punctuation which gave me a lot of courage. Maybe I need not conform. Perhaps my autism challenges could be transformed into strengths along the way. I just had to — had to — write in kind. I wrote the following poem in response to cummings’ assertions in his poem “since feeling is first“ and wrote it in the nonconformist style of his other poem “in Just-.”


noPeriods, Period
death’s no parenthesis
asserts e e cummings.
         actually
death
is
    a
        comma
                           an
   ellipsis
                                                                       whitespace
aPause
as the soulRenewsBody

life’s no paragraph
avows e e cummings
            just face it
life — is
   a
        smorgasbord
    no grammar syntax
       …just flows…..
    noPeriods. Period.
says  e e hari

I have to thank e e cummings for giving me additional perspectives on breaking the boundaries. “it takes courage to grow up and become who you really are,” he once said. 

I can break free to just be me.

Contact Hari Srinivasan at hari@dailycal.org.