Anupama writes a letter to her 18-years old daughter. Read what she has to say.
Children with special needs, like this child with autism, are often misunderstood. Here is a searing self account of an autistic child.
I am a mother of two, a volunteer part-time teacher at a local government school, and an author of story books for kids. As a result, I find myself invariably drawn towards and reflecting a lot on the subject of Autistic Spectrum Disorders. Especially as a parent, and as a teacher, it is only natural to be familiar with this phenomenon and the implications, given the growing incidence of this condition, and going by the statistics, and the rising global awareness towards neuro-diversity.
I started with every intention of penning down my observations, learnings, and thoughts on this, in the form of an article. But as I begun, questions endlessly emerged, that eluded any answers. Questions that begged to be shared.
Neuro-divergent, high functioning autism, low functioning autism, Asperger’s syndrome, ADHD, socially awkward, special needs, sensory perception disorder, language impairment, Neurodiverse…Weighty terms that I see getting tossed around a lot, in this space.
What must it mean to think differently? So I attempt to don the voice of one.
With words below, I seek to glimpse and offer a glimpse into the world of a neuro-divergent.
Questions, concerns, feelings…to attempt to voice them from the viewpoint of an Autistic child – the child’s voice in italics, mine in ordinary font.
I am just an ordinary kid,
Assigned a special seat in the social grid.
I feel the same way as you do,
Though in varying degrees, I construe.
I feel happy and I feel blue,
I am as much a human as you are too.
Then why do you seek to brand me?
What is the need to slot me?
In a world so diverse….so finely partitioned,
On religion, race, caste, creed and more,
Why do you attempt to add yet another reason to discriminate?
Just another criteria for hate?
Maybe it’s a phase, maybe it is just the way I’m made.
Before you judge me ask yourself this…
Could my condition be the result of an inadequacy of the society around me?
All that exposure to technology, in its various forms maybe?
All those pesticides in my food and their genetic alteration?
Or is it the environment, with the rising toxic pollution?
Could it be an allergic reaction to a particular food or vaccination?
An excess of audio visual stimulation that sent my sensory perceptions into a disarray?
Or some yet to diagnosed disease that is holding me in sway?
Or is it all just an unfair perception of sorts, an illusion…
A confused interpretation of personality types which were always there,
But just getting noticed and observed in greater detail, in a world more connected and judgmental than ever!
Does the pretext of intervening and trying to help, fuel a booming industry?
Considering this condition demands an evolving body of research with more learnings and findings emerging every day.
Questions from a skeptical, judgmental human after all…
Or is it all in the gene…evolution at its best?
Nature rewiring us to seamlessly adapt to the rapidly changing environment?
Maybe it is time to give these questions a brief rest…
Instead, focus and explore deeper into how it must really feel to be different from a neurotypical…for a change,
As we attempt to touch on the conditions… that span a wide range.
So more questions to probe and prod, what it means to be neuro-diverse,
And speculations of what it must be like to be part of this mysterious universe.
Rather than make statements close-ended and terse,
I attempt to express in the form of a free-flowing verse.
You say it may manifest as a socially unacceptable difference, disability, disorder, deficit, impairment, special need, with a random gift, a talent thrown in…into this lot…
With the root cause supposedly pointing to an inadequacy of some shape and sort.
If you do insist on calling it a disorder or inadequacy,
And do not see it just as a difference perceived wrongly, a fallacy,
Then what if this inadequacy lies…
Not in me but in the adults who unknowingly influenced me in my early life,
What if their work-life balance situation prevented them from engaging in meaningful conversations with me?
Or maintaining the socially normal eye contact?
Or spending quality time with me in the true sense of the phrase?
Or ill-equipped with skills to teach me the three Rs,
Shaping me in my formative years…highlighted as the crucial years,
So maybe I mimicked two and three dimensional characters more,
Sourced by a TV, Tablet, Laptop or Video game,
What better babysitter than technology, if you ask me!
Screen, test and certify me if you must, to identify where on the spectrum I fit in,
If that will help you tailor my learning and nurturing requirements to my special needs, by all means do so,
But then do also answer the question that burns within…
Will you also neatly file away the results, store my records?
What if this is used to profile me as time moves on?
What if it stacks up the odds and not entirely in my favour?
What if I am targeted?
Not today but someday in the future.
I will let that question sink in,
While I steer this a different way,
Considering I digressed from delving into the feelings of one with special needs.
I might not always look you in the eye,
I may even prefer to shy away from telling a lie,
‘Cause what good can a white lie do!
Pointless to hear something that is not true…
When I ask you, I expect you to really tell me how your day was too!
How do I focus on your eyes, when I sense, see, hear and feel so much more?
Especially when the words you speak are at odds with the shadows in your eyes,
Or the reflections mirrored in them, that draws my attention to a far away place,
So I choose to look away, so I may listen without the distraction of looking you in the eye.
Fidgeting calms my nerves when there is too much emotion for me to take.
Not easy for me to sentiments fake.
Sleep doesn’t come easy,
With so many thoughts churning within, it is so uneasy.
My senses on high alert, seek release in activity you term as hyper.
Yes I sense, see, smell, hear more…
Be it the unpleasant ones like the censure in your eyes, the smirk on your lips, the smell of prejudice you exude, making me break out in goose bumps,
Or the refreshing ones like the nip in the air, the smell of freshly cut grass, the smiles and the laughter, the singing of the fan, the glare of the sunlight, making my heart expand and beat faster,
So much so that…my sense of speech can get locked!
The thoughts within bubble, overflow and collide, seeking expression through actions rather than words. Leaving me with an avalanche of emotions, without the standard outlet, as the common form of expression fails me…leaving me almost speechless, tongue-tied, I find myself devoid of coherent words.
I react and reach out in my own way and wait for you to reciprocate and connect with me at my wavelength…wishful thinking!
Your inability to understand me or your indifference or your disconnect from my reality, makes me snap,
‘Cause I’m human after all and seek a social connect, an innate need to be understood and accepted.
Then it happens…
A meltdown you call it, or a tantrum terrible!
An out of control little human is just not acceptable.
Dismissing this behaviour, as “kids will be kids” might be one end of an extreme,
Might have worked in the good old days,
But seeking to cure us, fix us would be the other end of the extreme surely.
So what would be the middle ground here?
Flapping composes me and relaxes and is well meaning,
When my awareness and alertness extends to every fibre of my being,
Repetition is comforting and puts my body in an autopilot mode leaving my mind to wander.
Always distracted, lost in my own world, filled with strange wonder,
You believe, I must be,
But it is just the opposite you see,
I am as aware as can be,
Of the world we both are supposed to inhabit so free…
My behaviour is only as contagious as a smile or a frown,
But mimic me you can, now why is that so bad?
Unfounded fear of contagion should not stop the adults from letting us hangout together,
Then why do they?
Numbers might talk to me as eloquently as words can,
Or it can be just the other way around,
Or maybe I will just let my overwhelming desire for sports do the talking,
Or let my craving to solve puzzles or build with blocks take over!
There will be scenarios where I hear you and respond in the way I understand your words,
But my response is not what you expected.
You find it off tangent and totally off the mark,
While I realize it is your question that is out of line,
Not just metaphors and similes that might throw me off,
But even your direct speech can…depending on the context I hear it in.
You insisting that I am wrong might just overwhelm and stress me out.
Maybe some patience and an action from your end to go with your words, to indicate what you mean, can go a long way!
I lack the empathy to connect and can’t read social cues you say,
What I sense is way too complex for me to process and react the way you expect me to.
My attempts to reach out seem awkward to you.
Why do you jeer at me, mock me and avoid me.
When I lash out, you gang up and label me a menace to the neighborhood and society
And blame it on my parents…and on upbringing.
Where is the empathy now?
How do I trust you enough to accept me and integrate me into the society’s fold?
Closing statements as I seek to bring some order to this flurry of thoughts…
I’m entitled to my quirkiness and my desire for orderliness,
Just as much as you are, to your conventional acceptability, in all fairness.
Our kind is growing the stats say. When I looked up today, it said 1 in 66.
Maybe it is time to approach this differently than as a difference, disorder or a disability that needs a fix.
Study, research, understand and seek to empathize.
The society’s inability to step up to this challenge or rise,
Cannot label our idiosyncrasies as deficits or disorders, and brand us unfairly, with a cause for hate or fear!
So why not strike a balance here?
Between, you, the neuro-typical and we, the neuro-diverse…or is it the other way around?
And trade empathy for empathy…for real,
As we try to adapt to each other’s needs, both equally special.
There will be more of my kind soon,
Treat it as less of a curse and more of a boon…
Respecting the other’s differences and attempting to understand, will go a long way in bridging the gap.
As the world continues to deliberate, ruminate and discuss endlessly about the finer aspects of neuro-diversity and seeks to integrate the neuro-diverse population with the rest of the society, to lead a socially normal and meaningful life, where does “classic autism” (for want of a more appropriate phase) fit in here?
The term “Autism” as it meant half a century ago, before the spectrum and neurology, terms and aspects crept in and the physical disabilities that characterized the classic Autism condition were just dropped from this current equation. The current equation that defines the broad spectrum of conditions that span social behaviour, communication skills, restricted interests, cognitive ability.
I end here with a humble appeal, as we attempt to bring awareness and sensitize the world…let us ensure that due consideration and emphasis is also given to classic Autism that is accompanied with physical disabilities.
Published here earlier.
Image source: By hepingting – https://www.flickr.com/photos/57570482@N06/5299266366 [CC BY-SA 2.0], via Wikimedia Commons, for representational purposes only.
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