But Why?!!

 But Why?!

Rekha and Ravi counted every passing minute as they waited for the clock to chime ten. The passage of time took on a different dimension when waiting for an appointment in a developmental paediatrician’s clinic , waiting to be told what could possibly be wrong with the apple of your eye, who was all of two and half years old . Nidhi, the said apple of the eye, stood near the window, rocking , and completely oblivious to what was happening around her .

‘You can go in now’, said the lady who manned the front desk .

Rekha and Ravi walked into Dr Shreya’s office with Nidhi in tow.

‘Good morning and please sit down’, said Dr Shreya, even as she observed Nidhi do a quick recce of her room before choosing to go and stand by the window , ‘Nidhi’s EEG and psychological assessment reports have come.’

Rekha and Ravi took a deep breath, bracing themselves for the worst .

‘Nidhi is on the Autism spectrum’, said Dr Shreya

Rekha’s world came crashing down when she heard the A word . Her worst fears were confirmed . After all, Nidhi wanting to eat only mashed food ,wearing specific type of clothing and refusing to make any eye contact whatsoever or attempt to speak, were clear red flags that prompted Rekha and Ravi to seek an assessment . And here they were, facing their biggest fear.

Rekha tried hard to hold back her tears as she asked Dr Shreya, ‘So does that mean Nidhi will not be cured? Will she ever talk at all?’

‘To begin with’, said Dr Shreya, ‘autism is not a disease for it to be cured . It is a disorder . Put simply , Nidhi’s brain is wired differently . Autism is a very wide spectrum encompassing a wide range of abilities and challenges . While only time can tell if Nidhi will speak , what we do know is that early intervention does help acquire vital life skills and goes a long way in achieving better prognosis . Please get her started on occupational therapy and speech therapy, besides an appropriate pre school program .’

Ravi, Rekha and Nidhi headed home in complete silence . The one question that kept playing in Rekha’s head in a loop was , ‘But Why?! Why me and why my child?!’

Soon, Rekha and Nidhi’s lives became all about therapies . Their day was filled with trips between  the pre school and multiple therapy centres, leaving them with very little energy for anything else . Nidhi’s sensory challenges made socialising an unpleasant experience and this left Rekha feeling lonely .

Social media made things worse . Most of Rekha’s friends flooded their feed with photos of vacations in exotic locations and spoke greatly about their children’s achievements . As for her, she had nowhere to go and nothing to brag about , except the consistent but slow progress that Nidhi was making in therapy . But who would want to hear about that ?

It was on one such day , when Rekha was wallowing in self pity , that a thought occurred to her . As per the latest statistics , 1 in 100 children in India were autistic . That meant , she was not alone in this journey . All that she had to do was to find her tribe ; parents of other autistic children who would celebrate her little victories and lend an ear during tough times . And what better place to look for your tribe than social media ?

Rekha decided to document Nidhi’s journey with autism on social media . She created an account and began populating it with photos and videos of Nidhi doing different things ; eating different types of food , having a hair cut , riding a bike , writing for the first time - photos and videos that were a testimony to how far Nidhi had come . She even decided to throw in a video of Nidhi having a meltdown , with a view to raise awareness about the challenges of living with autism .

This social media account grew at an exponential pace , unlike Nidhi’s skills which progressed at a rather slow pace . The validation that Rekha received in the form of likes and comments encouraged her to post more and she soon became an unofficial expert of sorts who would dole out advice to other parents . Rekha soon began perceiving herself as an advocate for the rights of autistics . 

Nidhi, in the meantime , picked up the ability to talk , read and write and got admission into a mainstream school with shadow support , when she turned eight . School was a mixed bag of experiences and Rekha documented every bit of it on social media . 

Nidhi going away to grade school also meant that Rekha had more time on her hands than ever before. Inspired by the success of her “advocacy” work on social media and the kind of advice she doled out to parents, Rekha decided to do a course in counselling and start her own counselling firm. With time, Nidhi stopped needing shadow support and Rekha’s counselling business grew in leaps and bounds and the social media account was gradually forgotten.

One day , the twelve year old Nidhi came back from school, feeling particularly upset . Most days something or the other would happen that would make her wish that she didn't have to go back to school the next day , but go back , she did! for resilience was her middle name . Roopa was the biggest bully there ever was in the history of Empower International School and Nidhi was her favourite target . There were, of course , snide remarks about the what she spoke and how she spoke and the minor side issue of nobody wanting to be friends with her ; that was something she had gotten used to . Writing was something that Nidhi abhorred , not because she was lazy , but because she found it sensorially uncomfortable . Her school had decided to allow her to type her assignments on her laptop and print them out for submission . The school was nice and in the words of the co-ordinator was one where , ‘we do all that we can to make inclusion a meaningful experience.’

Nidhi knew she was quite different from her peers even before the word ‘autism’ was introduced to her when she was eight . After all , growing up , the kids around her did not seem to struggle with things that were a challenge for her . They played in the sandpit amidst a bunch of others, all making noise , wore pretty dresses with pokey embellishments , ate different kinds of food and most of all , seemed super comfortable in their own skin! Clearly , autism had changed the course of her life!

There were things that Nidhi was really good at. Academics , for most part , was a cakewalk , especially since she now had the permission to type out her assignments . But, this did not sit well with Roopa who perceived this as an unfair advantage . 

Nidhi had worked very hard on her English assignment - a book report . She wanted to print the assignment during the snack break , after the music class and left her laptop on her desk when she headed out to the music room . 

When Nidhi came back from the music class and tried to login to her laptop , she realised that it was locked because someone had repeatedly keyed in the wrong password! Didn't Roopa leave the music class early feigning menstrual cramps? But she surely would not own up to doing it, would she ? Nidhi was super upset and burst into tears. She even reported it to her teachers. But what was the point? There was no way for her to submit the assignment that day. Thankfully , she had the habit of saving her work on the cloud . At least she would not lose it .

Nidhi went home feeling quite upset . She ate the snack that her grandmother made , headed to her room upstairs and shut the door . 

Nidhi loved coding . To her , the activity was much more than writing a few lines of code . It was a way to find the elusive calm. The world of codes was predictable and problem solving was easy . Nidhi took the laptop out of her backpack ,kept it on the table and began crying . After all, she could not write a few codes when she needed to do it the most…

Nidhi went to wash her face and she suddenly remembered that her mother's old laptop was still there and she could use that to write codes . She rushed to her parents’ room and fetched the laptop . Nidhi connected the power cord and turned it on . She thanked god for her razor sharp memory and keyed in the password only to observe that her mother had not logged off her google account in the laptop that she had not used in a long time . ‘So much for lecturing me about Internet safety’, she muttered to herself , ‘I need to tell Amma about this when she comes back from work.’

Nidhi clicked on the Google icon , when she noticed notifications for a popular social media app . Curious, she clicked on it . What met her eye shocked her . It was an account in her name and was full of pictures and videos that documented her growing years, content that was a testimony to her struggles , videos that captured vulnerable moments and photos that she wished random people didn't have access to . Yet, that is precisely what had happened . People who she had never met and would probably not meet ever, had access to a lot of information about her. They knew what her childhood was like. They knew about  her small victories and big failures and her journey thus far . Nidhi felt betrayed and devastated . It hurt ,coming from the person she loved the most , it felt like someone had sliced her heart to bits and left it for the wolves to devour. She took a deep breath and decided to read the comments on the posts . Nidhi spent the next hour reading the comments . There was a clear pattern to it . From being a mode to vent about the challenges of raising a child who was so different to becoming an unofficial counsellor of sorts!! ‘ Amma, did you use my childhood experience to build your career?’, wept Nidhi, ‘But why?!’

———————————————————————-

I was a part of a social impact fellowship last November and as a part of the fellowship, we were divided into teams, and each of the teams had to run a social campaign . My team decided to run a campaign to raise awareness about autism among teens and foster social inclusion . I was the only neurodivergent in the team and my team members were not very aware about autism . So I decided to share a few reading links and videos to help them understand autism better . The cursory google search led me to a video of an eight year old autistic boy having a meltdown in a supermarket, uploaded on YouTube . The identity of that little boy and some of his most vulnerable moments were out there for the world to see .

It got me thinking about the scores of accounts on social media that document the lives of autistic children, some as young as three or four years old . Majority of them are posted by parents or other primary caregivers, thereby pushing the concept of consent to a grey zone, because hey, these children are not old enough or mature enough to provide informed consent to their lives being discussed in public domain, not to mention the obvious risks associated with sharing personal information on the Internet .

It got me thinking about how many of these posts cross the line between raising awareness and gaining fame . That , to me, was a disturbing thought.

We autistic self advocates talk about living with autism, to raise awareness and promote acceptance . But it is our own experiences that we choose to share . We make an informed decision about how much to share and where. It is not the same when someone chooses to share the journey of a young child in detail ,even if it is the parent, because that young child has no clue what this is all about. 

Everyone, including young autistic children , are entitled to their identities being protected and struggles remaining private. I hope this leaves you with some food for thought.