Autism Diaries by Dr. Aditi Bandyopadhyay (Managing Trustee of SAMYA Foundation)

Autism Diaries by Dr. Aditi Bandyopadhyay (Managing Trustee of SAMYA Foundation)

Autism Diaries 13


It’s been more than a month that I have not penned down my Autism Diary.
Here, before I start this page of my interesting story, of course about my son Ishan who is on the spectrum, verbal and full of ideas and logic though facing challenges of social communication and comprehension in every instance at every level of increasing academic and social challenges. No, it’s not my attempt to glorify the beauty of so called HFA ( High functioning Autism)- since I believe now after a beautiful explanation of my respected senior Dr. Animita Chowdhury Saha that attributing the label of HFA undermines their hidden challenges. This incident is an absolute example of that. Also, I love to share his views and philosophy out of pure joy of motherhood and to speak out to the world the thought process of this ‘ neurotribe, a neurodiverse group’. I feel, Ishan is still expressing his mind through words, but there are surely many on the spectrum, whose challenges deprive them of this verbal expression but their minds and bodies still think and feel the same way respectively.

So, here comes our story. Ishan is obsessed with electrical circuits, switches, lights and fans. This is a known fact for many and also to those who have been following my Autism Diaries closely.
Since last year, he has been hopelessly obsessed about street lights, their subtle flickers, their times of ‘on’ and ‘off’ at dawn or dusk and things like that. This obsession had been kind of eerie to an extent that he would stealthily sneak out of his bed in the middle of the night, and go to the balcony, stare at the street lights ( our home is on the second floor and right on the main road). He would practice visual stimming by looking at the lights for hours by nodding his head and his eyes would move in a fixed horizontal manner ( much like nystagmus, though for him it was surely voluntary). Disturbing him then would result huge melt down and at times aggression and irritability. It had taken away our sleep too in the family. Over last six months, sincere work with ‘social stories’ and ‘structured timings for street light watching’ helped him cope with the challenges to a manageable extent such that this obsession has started taking the back burner.
Now why this advertisement is linked to this post???? 😉
Recently, Ishan had been following this advertisement observantly. I felt adolescence was slowly creeping in with his interest in romantic relationships. In fact, these developments give special parents a secured feeling, that certain developments are following the right track. Moreover, he is also bent upon being a good husband in future dreams a life with wife and children (  will write that story some other day).
Last evening, after watching this ad ( attached in the link to the video in this post) he smiled as usual jubilantly and looked at me and said, ( he knows Anushka Sharma and Virat Kohli and is quite a fan of the latter)

Ishan: Maa, Anushka Sharma is sleeping but Virat Kohli is awake at night. ( smiling). Wife is sleeping but husband is awake to watch Street lights 😊 ( he looked jubilant with the idea that Virat Kohli watches street lights at night!!!!)

Thus, I was proved wrong, and Autism won this time too, motivating me to share this simple and sweet story with you all…

 

Autism Diaries 12

This conversation between me and my son Ishan recently was the most intriguing of recent times.
Since a year, I have been talking to him about Autism, it’s overall spectrum, the challenges of being in the spectrum and the super abilities that are associated with it. So, now he is quite comfortable in accepting his special abilities, his anxiety and the reason for him to be in remedial classes in school.
So, very naturally crept in, topics of other groups of disabilities and challenges and the special skills and needs specific to them. He met few of my friends using assistive devices, wheel chairs, and having visible difficulties.
Last week, it was one evening when this interesting conversation happened:-

Ishan: ‘ Maa, what if I had three hands, three legs and three eyes. Would that be a disability?
Me: Yes, dear
Ishan: Why? I want to have extra limbs on my chest and my abdomen ( he uses these terms exactly, may be upon hearing from me)
Me: Then it would be difficult to walk, to eat or study. You would fail to read a book on the table with your third hand entering your field of vision.
Ishan : Would it be a disability? ( exact words much to my surprise)
Me: Yes, as it would be difficult to do daily activities.
Ishan: So, if I have one less or one more than the given number of hands, feet and eyes that would make me disabled?
Me: Yes, as there is a general rule for number of organs of the body. Any one less, or more would make it’s operations ( elaborated it for him) quite difficult. Hence, it would be a disability.
Ishan: But Gods and Goddesses at times have ten hands, ten legs, three eyes, three heads. So they should be more disabled. How come they have super powers??????

( in last few days after that conversation, I tried to explain it to him, that we imagine a God / Goddess & and draw Him / Her with a picture or make an idol or statue. They are so strong and powerful that they can do many works at a time. So, we frame deities in these forms. God has no real shape, form or gender….)
But our little guy is yet to come to terms with this new concept!!!

 

Autism diaries 11


With the cyclone ‘Phani’ devastating the places in it’s course, a little Autistic mind who dreads thunder and storms puts some thoughts which is not though directly connected to any scientific perspective. It’s a reflection of how this logical brain thinks, gets affected by systems that do not fit into his logic and how his thoughts fleet between ideas.
Now recently, Ishan has started reading mythologies from Amar Chitra Katha and Panchatantra etc, but mostly guided by me as he can’t hold his attention on the pages for long and prefers going back to the same pages already read. So it takes quite an effort to make him complete an entire story or even a movie. He prefers going back repeatedly to the pages read and pictures or scenes already seen.
Now, mythologies are filled with stories of sages undergoing austerity, penance and then acquiring powers but not patience and devastating mortals by mere looks into ashes. Ishan starts assessing ‘ good’ and ‘bad’ from such instances. To him ‘ Phani’ the cyclone is now one such great bad super power whom he thinks should be taught a lesson. So with words in news like ‘ Acchre porlo Phani ( Bengali) meaning the storm crashed on the sea shore’, Ishan reverted back ‘ Jhor ke tule ami achhar marbo ( means I will throw the storm on the ground) ‘. However, these are natural curious responses of most children, I guess and Ishan started thinking of them a bit later than his other regular peers’

Yesterday, I wanted to shift his mind from Phani and ways of combatting Phani to some other stories. Now, again mythologies are filled with characters practising polygamy ( mostly men). Ishan is big on planning his married life in future and desires to have a wife and a family 🙂. It was the story of King Sagara, grandfather of Bhagirathi. Earlier also he had read about King Dasharath and his three wives. Now here it goes-

Ishan: How come they have so many wives and you are allowing me to have one in future?

Me: Yes you can have one at a time ( explained keeping in mind the present social scenario 😉)

Ishan: I want to have more wives, for more fun😯

Me: That is not allowed these days. Legally cancelled. ( explaining wife is a responsibility and not fun, and such ethics wouldn’t work during such arguments. Short answers are best, and reasoning might come later when he would be calm)

Ishan: From when? Tell me the date from when having more than one wife was cancelled ( in tears)

Me: I don’t know

Ishan: You have to tell me. If it was cancelled once, it can again be started, that is why I need to know the date. It is very important for me. ( exact words and was visibly disturbed and angry)

Ishan has a big fascination of dates. Since almost four years now he has the calendrical skill of telling what is the day, if the date, year and month is known to him. Recently I met another Autistic child, who has the same skill. These apparent savant skills have no use, if their internal storms can’t be tamed. If any explanation is not upto their expectation that creates huge huge storms inside and for people around them. It seems funny, glorified pedagogy, parental projections of genius in child from the outside world, but only the family knows what we go through if they are unable to make them understand regular social norms.
These simple incidents cause even ‘ melt downs’ and then again being the Mom of a verbal ASD child, I understand the reasons behind such melt downs, as Ishan can speak out his mind in his own way, which most of his non verbal Autistic peers can’t. Thus we deal with such consistent continuous internal storms each day. Not trying to undermine the the disastrous effects of such natural calamities, but trying to put forward the storms of our lives, the pain of not being able to make your child accept a social norm or rule as a normal acceptable occurance……

 

Autism Diaries 10

Sharing a bit of profound wisdom, I learnt from my son in the most simple way. Many would question again, why would this fit in my Autism Diaries? Now, being Autistic doesn’t mean being intellectually challenged. Rather the power of logical reasoning and generalization of concepts and their practical implementation are the assets, which Autistic minds are gifted with and at times these skills are far more advanced as compared to their age group ‘typical’ peers who might be socially more appropriate and connected unlike the ‘ atypical’ minds working on other focus areas.

Well, getting into the incident. In his social studies curriculum in class 4, my ten year old boy learnt the four noble Truths of Lord Buddha where it said ‘ Desires are the root cause of all sufferings, and to avoid sufferings, we should get rid of desires. ‘ Happy, I was like all other Moms to know that my son has memorised it well, and would be able to put it on paper if the question on the topic was asked in the exams. I never knew, that he not only learnt it by heart but put his heart into realizing it, and to an extent trying to apply the philosophy in his own life.

Narrating the incident on the last day of his annual exams a few days back…

Ishan ( excitedly): Maa, this evening I will have battered fish fry cooked by my Granny, as exams are getting over.

Mom ( me): May be not today, but after a few days, please.

Ishan ( disappointed): Maa please today. You are making me sad. I am suffering.

Mom ( me): I know you are upset, but for certain things, we need to wait at times.

Ishan ( with despair in his voice): Maa the desire of having battered fish fry is making me suffer. I have to get rid of it.

( by rubbing his palm over his forehead he exclaimed) Maa, I took the desire away from my brain. Now my suffering will end. I have applied Buddha’s rule and my suffering is gone, now!!!!

I couldn’t help hugging my little wise man…

How beautifully he taught me the philosophy with his innocence in such a perfect manner. It is from them ( our children) we need to learn how to put knowledge and philosophy into practical life. We hear hundreds of spiritual discourses, attend retreats, read motivational books by life coaches, and yet we suffer and cry in pain when the crisis arises. Here, a ten year old, with significant communication challenges in expressing and understanding social norms, beautifully put his learning from a simplified chapter on Lord Buddha from his academic curriculum, and coped with his disappointment… ‘Proud of you my son. You are my true mentor guiding me through the journey of life ‘…..

 

Autism Diaries 9

I dedicate this ‘Autism diary ‘ page of mine to the lovely little soul Sambuddho, whose recent untimely demise has left all of us shell shocked. Most of us know how Sambuddho drowned and died in the pool of the hydrotherapy room of his school, which was unguarded and the active little one was probably unattended, the reason this happened in a matter of few minutes……

Sharing an incident that happened with my son Ishan ( turning eleven years in one and a half months) in a few days after that. So far, I had attributed my son as a ‘ high functioning’ autistic child trying to explain his abilities despite his challenge s, not knowing that this very term can undermine his challenges. Last Friday, after Ishan’s annual exams got over, I took him to Birla Industrial & Technological Museum after a lunch at Haldiram’s ( a vegetarian food chain) as was promised to him for days. Confident I was, that Ishan with all his verbal abilities and awareness would be able to navigate his way to the washroom, to wash his hands and come to the table ( as we are quite frequent customers at that eatery). So, I asked him to wash his hands and go to the table, where I was assembling our food items from the food counters. All of a sudden as I set my eyes towards the washroom corner, I saw my son almost ready to step inside an elevator. I literally dropped the food tray on a table and ran to him in despair and caught him before the elevator was taking off. As I brought him out, he was quite oblivious of his act and was upset about being stopped from embarking on his joyous journey. When I asked him why did he do that. He explained, ‘ there must be other washrooms in other floors, so thought of taking an elevator ride, wash my hands and come back’.

Now, this may appear as a very simple incident to many, especially to parents of neurotypicals, who would argue that his reasoning had proper sense. But, a neurotypical child would not do that keeping in mind fear of the unknown, fear of being alone in the elevator, and many such other reasons. In Autism, impulses take over the person’s priorities. My son, has obsession s for motion. Moving objects, rotating objects attract many Autistic individuals especially those who have stimming ( self stimulation). It is not that every Autistic will have the same stimming mechanism or will have the same fascination. My son for example fears water like anything, unlike many Autistics who feel a strong affinity towards water.

If that day, my son would have left in the elevator, there was no guarantee that he would come back, as something else might have attracted him in the process, which is why it makes our children more prone to danger. The reason, many a times Autistic individuals tend to get lost. Many a times, they might not be able to disclose their name, phone number and address. Motions of wheels, fans, ripples in water, smokes, and many such other things attract them like magnets. Hence, parents, school authorities, caregivers, teachers, therapists, and even neighbours should be more aware and cautious about the needs of Autistic persons.

Autism will be Autism, be it young or old, boy or girl, verbal or non- verbal, savant or severely challenged.Thanks for your patience in reading this post which might help you to better understand an Autistic person and help him/ her and the entire family.

Autism Diaries 8

Ishan asks: 0 has no value, but is it even or odd ?

 

Autism Diaries 7

In a very recent training that I underwent known as IDDEA module ( Identification of Developmental Differences and Early Action), I learnt a wonderful topic regarding stages of parental acceptance of a child’s special needs, which I would like to share today:

  1. Shock
  2. Denial
  3. Grief
  4. Guilt
  5. Anger
  6. Confusion
  7. Acceptance (or Rejection)???

 

I heard a Mom once disclosing, ‘ I LOVE MY CHILD THE MOST, BUT I WISH I LIKED HIM’

 

What about us ?

 

Autism Diaries 6

 

At Bagdogra Airport a few minutes back while seated at the lounge, Ishan witnessed a regular neurotypical child of his age throw a big tantrum with his Mom over getting a packet of snacks, which the Mom didn’t agree to buy him….the Mom slapped the child publicly with two three slaps and Ishan observantly watched all of that. Then he started, his wisdom

 

Ishan : Maa, this mother is wrong….I think she needs parent training.

 

Me: The child was misbehaving, so she chose to do that to stop him.

 

Ishan: That’s not the way. This child needed proper ‘social story’ from before. This is not right. God does not like children to be beaten up. Very wrong ( exact words)

 

Me : ( AWESTRUCK !!!! said to myself, ‘this is pretty cool )

 

Autism Diary 5

Ishan returned home after science exam and explained to me that, for quite a number of known questions he skipped due to his failure in constructing the sentences.

Me: Why didn’t you answer them?
Ishan: For those answers my Brain’s video recording did not work. Not my fault.

My heart wept. How nicely he explained his inadequacy. I don’t care if my son can’t manage exams which are never the true markers of knowledge. Who at his age can explain it so well, as he did? Love you my boy

P.S: Some of you might question the Auti component here as many neurotypicals fail to fare well in exams too due to failure to remember….but for my son, theAuti component does not allow him to link the salient points in any descriptive answer as his speech is discreet and most sentences are not connected. And also the Auti component helps him analyse and exactly explain his problem in the most specific manner which many will fail to do at his age for sure.

 

Autism Diaries 4

 

I write this section not only to talk about my Autism journey or that of my child’s but all the real life experiences related to Autism that I keep observing around me.

Today, I decided to relate three stories or rather three real life experiences that I came across in last two weeks and each happened in my Dance and Movement Therapy classes at SAMYA Foundation:

 

Situation 1:

 

It was Friday late evening after my class was over with adults and adolescents. A lady was waiting for me as reported by my assistant. She had found her way to the DMT center, upon watching special needs people entering there and upon meeting me questioned, if at SAMYA we have a vocational unit? I explained that it was only a DMT unit and our clinical services to be started soon. But, she was on the look out for a vocational unit for her 21 year old son, who was mentally challenged and had been taking him to some highly rated intervention units in the city, since his childhood. Now the young man was sitting idle at home, trying to get vocational training and was useless according to the mother. Then she said…

The mother : ‘Mam last year I got him married too, to a girl a little younger to her. Actually my son seems to have no problem in his appearance’

Before i could absorb this shocking statement the lady left the place in a haste, as perhaps she could guess what was coming.

 

Situation 2:

 

14 year old very very able and high functioning boy, coming to me but presently undergoing acute psychosis. His mother is a one time professional, but now a home maker and Dad is an accomplished physician.

 

The Mom tells me, ‘Mam, I am just so disturbed that everyday my husband being a doctor, keeps blaming me for my son’s Autism. My Grandfather had Alzheimers and he feels, that’s the reason for my son to be born with ASD. It has originated from my side of the family. We have a regular child too, and in front of both he uses abusive words for me and my family.

 

Me: But, he is a physician and should know, that cause of Autism is undetermined till now. Moreover, none of the proposed theories, speak about what he says.

 

Situation 3:

 

A Mom comes with her 13 year old daughter, talented in vocal music but has huge behavioral and emotional issues and had made numerous attempts to escape from home. In fact, for her we had to restructure our security system in class and make it more firm.

 

The Mom : ‘ Mam she was not this way until her Dad died in 2016 out of 15 days of illness. My child cries for her Dad who was her lifeline. She was also very close to my parents, her maternal grandparents who passed away in 2015, within three months interval. I left my job and am full time with her, to make her Dad’s dreams about her come alive.

 

Me: It must be hard for you. Do you have another child or any family support?

 

The Mom: No Mam, I only have her, and I try to stay happy for her. I cry in the bathroom, turning the faucet on, so that she can’t hear me.

Mam, for her I am a mother today, she is my ADOPTED CHILD. We were so happy the day she came into our lives. She brought a new meaning of life to me , my late husband, my late parents !!!

 

The situations are not unfamiliar to most of us. But , I have two questions here for myself and to you all…

 

  1. Who are the real parents here, the biological parents or the parents who embraced their non biological child?

 

  1. It’s again time to think. Whom should we blame for our ‘miseries’ ( as most parents

think). Autism and Society again?

 

It’s time to stand before the mirror…

 

Thank you

 

 

Autism Diaries 3

Nowadays, my son is in the spree of reading whatever, that comes across his way in English or Bengali. The news headlines running at the bottom of the TV screen mostly draws his attention. So naturally, words like ‘rape’, ‘gangrape’ (dharshan/ ganadharshan) which are gifts of today’s society to a child’s vocabulary, meet his eyes and he keeps asking for meanings of any new word.
When he had asked about the meaning of such words, ‘I had said that when a man or group of men together torture by hitting or hurting a woman physically it is called rape’ and as an extension to it I had also said, ‘ a good man never hits or hurts a woman’.

Now yesterday, we had been to a Birthday party of a friend of Ishan who is a girl with Autism and at times in her spells of frustration, she does hit her friends. Ishan was a bit agitated at her Birthday party last evening with a fear of balloons which he dreads as he gets bothered by the sound of balloons bursting. Something happened between the kids and the Birthday girl who was only a year older than Ishan, spanked Ishan. Ishan as a response held her hands tight before the next blow and fled from there. I could get that the slap was a bit painful for him.
I asked him after returning home, if was he hurt?
Ishan’s response was, ‘ Maa if she was a boy, I would have hit him back, but that could not be done as she was a girl, and so would become a woman soon. I will also become a man soon, and so to be a good man, I need to practice this. Remember Maa, you told me never to hit any woman.’

For a moment I paused, and then I did really feel proud of my son and moreso myself. Yes my son with ASD at age ten knows how a man should behave with a woman. I am proud of us.

Autism Diaries 2

This is about Ishan again. He keeps exploring scientific truths in his own way, as the scientific models or explanations in books, do not interest him at all.

This small experiment he started which I could record last evening just to give an idea of how these little minds work.

He calls on my cellphone from the cordless phone of our landline and puts my phone on speaker mode. There occurs an echoing, which is perhaps the usual feedback we hear when people call on television/ radio live shows and they are asked to move away from the television or radio, to avoid that disturbance.

Ishan explained to me in his own way, as I had explained to him once that sound waves reach the satellite from one cellphone, get reflected and then reach another cellphone, for which we can talk to each other at a distance over phone.

This was exactly his version…

‘Maa, the sound waves are going from the cordless phone to the satellite and coming back to the same point as I have placed two phones very close, for which the sound waves are fighting with each other and making the ‘oooaooooaooooaoooa’ effect (by which he meant echoes)’

I was surprised, as perhaps he meant interference of waves, though it may be incorrect for which i am placing this question before some respectable people from the field of physics and allied sciences- Sujit Bose, Bratati Choudhury, Malay Kanti Dey, Jhuma Das, Ananyo Bandyopadhyayand also others who might be related to the field.

My aim here is not to project any prodigal skills of my child, but I want to convey that if science is made interesting with experiments, if our curriculum is revised and customised as per needs of children, then every child can make use of his / her fullest potential. I was really taken aback at his explanation as this child fails to comprehend simple questions, has severe anxiety attacks before exams not due to studies but for changed environment of exam halls ( that’s again a big story related to unfamiliar situations), and has significant issues with rote memory like his Mom. :)….thanks to Raj N Halder, his art teacher for capturing the video last evening at our home.

 

 

Autism Diaries 1

 

Dear friends today onwards I decided that all my topics related to Autism, where I will express my views as an article, story or skit and my son Ishan’s views and perceptions, will all fall under this section….

Ishan has started penning down his thoughts. He prefers writing the number of sentences, as a heading before he puts down his thoughts. Surprisingly, he sticks to only the number of sentences previously decided by him. So, here it is. This morning, my little boy came up to me in tears and said..

Ishan: I will break this earth, when I grow up to be an astronaut.
Me: Why?
Ishan: Earth is bad, and so I will make people stay in satellites. People will live but earth will crash.
Me: But why is earth bad?
Ishan: It is bad, as it pulls us down and keeps us fixed on it. It pulls us down!!!

I wondered, does it really pull us down?. Well, this idea was my extension of his thoughts penned down on his copy which he showed to me.

Many would wonder that even typical kids think this way, so where is the Atypical part, for which it falls under ‘Autism Diaries’ !!! Well, Ishan is only ten, and he has significant problem in communication and understanding. Yet, his thoughts outnumber age and maturity of even his neurotypical peers and there lies the beauty of Autism. Autism is not always an intellectual disability, rather I call it ‘hyper intellectualism’ ( a word coined by me, a Mom from the Atypical world of children)

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