A Father’s Journey with Autism- Chapter 23

In this blog, I want to share the most difficult times we faced when Simi went through a phase of anxiety disorder. Anxiety disorders in autistic children present a complex and often challenging aspect of their overall condition. Autism spectrum disorder (ASD) is characterized by difficulties in social interaction, communication, and repetitive behaviours. When anxiety disorders co-occur with autism, they can exacerbate existing challenges and significantly impact the child’s daily functioning and quality of life. As I write this, the horrifying experience is flashing before my eyes like a movie playing in reverse.

The incident happened in early 2017 when Simi had just become an adult. She had many dreams and aspirations, her hopes soaring sky-high. She looked forward to fulfilling many of her dreams, such as casting a vote in the upcoming election, going to see movies in the theatre alone, and attending nightclubs as she had seen in movies.
Simi used to browse my Facebook account since we hadn’t given her own account, fearing she might not be able to handle social media properly. This often put me in an awkward position, as she would accept all friend requests, some of which were undesirable. I regularly reviewed her activities on my account and deleted unsolicited friends at regular intervals.
Padmaja advised me to change my Facebook password so that Simi wouldn’t have access to my account in my absence. Instead, she suggested that Simi could use Facebook only in my presence, after I logged in to my account on her laptop.
As mentioned earlier, Simi was under medical supervision and was taking psychiatric medication to control her anger and other behavioural issues. However, after consulting with her doctor, she stopped taking the medication in December 2016, despite the doctor’s reluctance to fully discontinue it.
In April 2017, I was out of town for a week on an official assignment. During this time, Simi was unable to use Facebook because as advised by Padmaja I had changed the password, and she was told that she could only get the password after I return. Simi had been using my Facebook account only to log into many of her online sites and being unable to access these sites led to significant frustration.  As a result, she couldn’t sleep properly for five consecutive nights. Padmaja also struggled to sleep during those days due to Simi’s behavioural issues.
When I returned from my official tour, I found the condition of both Simi and Padmaja had become critical due to their prolonged sleep deprivation. Simi was in a different state of mind, frequently showing aggression, and for the first time, I saw her hurting her mother very aggressively (saying “sub jhoot bolte ho”) when I denied her not to use my Facebook. She was a completely different child from the one I had left just five days earlier. She lost her faith on us, as we did not keep our words.
I tried to contact her doctor, but he was out of the country. Through one of my friends got an  appointment with the head of the Child Psychiatry Department, AIIMS. I was advised to take Simi to the AIIMS Psychiatric OPD the next morning.
The next morning, we took Simi to meet the doctor in the OPD. As we waited for the doctor, Simi’s condition deteriorated further due to sleep deprivation, and her behaviour began to draw attention from others. A lady sitting nearby was observing Simi intently, which seemed to upset her even more. Suddenly, Simi tried to pull the lady’s saree.  This behaviour was completely out of character for Simi, as she had never shown any such before.
At that moment, the doctor entered the room and observed Simi’s behaviour. Without delving much into the details of our situation, he instructed his junior to administer a sedative injection to help Simi sleep. The junior doctor escorted Simi to a nursing room and attempted to administer the injection, but Simi resisted and had to be restrained to the bed. Despite the injection, Simi remained awake due to the unsuitable environment for sleep. We requested admission for Simi, but there were no available beds. After waiting for 30 minutes without any improvement, the nurse suggested me to speak to the doctor again. Upon returning to the doctor’s chamber, I found a different doctor present. Despite listening the situation, this doctor recommended administering another dose of the sedative injection without fully understanding the details.
After administering the second dose, Simi finally fell asleep. The attending nurse advised us to take her home as the OPD was about to close. Despite our pleas for her admission for proper medical supervision, our request went unattended. Reluctantly, we took Simi back home, but during the journey, she woke up again. The overdose of sedative injection had a severe impact on Simi, evident as her body started bending and she struggled to hold her head upright and she was shivering. By 9 PM, her condition worsened, and I desperately tried to reach the main doctor who had advised the first dose, but he was unavailable by phone. Resorting to any possible help, I messaged him on WhatsApp. Feeling desperate, I contacted one of my relatives who had completed his MD in Psychiatry and was pursuing his career in a government medical college Odisha that time. After explaining Simi’s situation and sharing all the prescriptions, he promptly suggested a medication and instructed us to wait for 30 minutes. If there was no improvement, he advised us to take Simi to the nearest hospital, as the overdose of sedative had severely affected her nervous system. I had also contacted to another relative who is also a doctor. he also advised me to take her to the hospital immediately if she did not sleep.
The medicine suggested by my relative worked wonders, and Simi began to show signs of improvement. I am deeply grateful to both of my relatives, which brought Simi back from a very dangerous state. Around 11 PM, I received a reply from the AIIMS doctor advising us to bring Simi to the Emergency department immediately. However, since Simi was already showing improvement and had started to sleep, we decided not to disturb her further and opted to wait until morning.
The next morning, we rushed Simi to the Emergency Ward of AIIMS. She was placed on a stretcher and accommodated in a cubicle already occupied by three other emergency patients. Simi underwent a series of  blood tests, we were repeatedly asked to explain her condition by the young team of doctors. The situation inside the emergency ward was chaotic and critical, with many serious patients. Overwhelmed by the sight of so many critical patients, we struggled to maintain composure.
We stood by Simi’s stretcher from 9 AM to 7 PM as there were no seats available inside the cubicle. Simi’s condition was also deteriorating. The attending doctor informed us that Simi needed to be kept under medical supervision for at least two days. However, at around 7:30 PM, we were suddenly asked to vacate the cubicle and relocate Simi elsewhere. Unfortunately, there were no available beds, and even the corridor was crowded with serious patients, thus no space to accommodate Simi’s stretcher.  Despite numerous attempts, we were unable to reach the attending doctor for assistance as he was on the round to attend other patients.
At that moment, I made the tough call to transfer Simi to another medical facility. However, the doctor in charge explained that releasing Simi wasn’t feasible as she was currently under observation. Despite encountering numerous obstacles, I persisted and provided a suitable written declaration to accept the risk and responsibility. Eventually, around 11 PM, I was granted permission to move Simi to a different hospital, VIMHANS. There, Simi was able to obtain a bed.
The ordeal did not end with admitting Simi to VIMHANS. In my next blog, I will share my experience at VIMHANS, New Delhi, which proved to be just as harrowing as our time at AIIMS, New Delhi

To be continued………………..


Author
Srinibash Mishra