Haunted and Helpless – A journey in Autism

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6 years old, tall, skinny and handsome, and yet, Arjun can be a monster. The world has to know what happens in the lives of people who care for him. So, Hema began shooting a video of him in the van. She didn’t care that her van was in the drive thru at Wendy’s and that it was 4 in the evening.

A few seconds at a time, she would train her phone on him as he jumped up and down in the back seat while screaming at the top of his lungs. The next minute she would focus the camera on her 10 year old, Aditya, who was sitting in the middle row seat silently with tears rolling down his face. He seemed to be mouthing, “Stop it, mom.” 

A few haphazard movements later, she switched to recording two employees at the drive thru window asking her to “Ma’m, please move the car out into the parking lot and wait.” She doesn’t speak and continues to tape Arjun still screaming and thrashing in the back seat, his seat belt unbuckled. A few seconds later there’s a knock on the passenger side front window, and the video shows the store manager requesting her to please pull to the side or else he will have to call the police.

Hema uploaded the 6 minute temper tantrum video onto Facebook from the parking lot of Wendy’s and waited for her world to implode. The manager came back with her food, but Hema was too busy consumed with what the reaction to her video would be. Aditya took the bag of food from him after leaning over and rolling down the passenger window. He thanked the manager who asked him if there’s anything else he could do for them. “Can you please call daddy and ask him to come here?” Aditya wanted to ask the gentleman but didn’t. “No, thank you.” He said and sat back down in his middle row seat. 

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Until 4 years ago, Hema exhibited the confidence and charisma that came with the feelings of having it all. She was from India where she had studied very hard to become a physician. Her mother was not the one to accept her three children to become just anything. They had to become doctors, she would not settle for anything less. And just like her brother and her older sister, Hema got into one of the top medical colleges in her state with almost a full ride. But compliments for accomplishments were rare to come by. And so, Hema, like her siblings, never fully understood if her mother was proud of them for what they had become. 

America, however, was a place that publicly acknowledged her hard work and perseverance. In South Side General Hospital, Mrs. Hema Gunnam was one of the most well known doctors. She was also somewhat of a star in her Indian American community. She conducted health fairs for free at temples around Metro Atlanta and visited multiple cities in the South East as a consulting physician. She donated her time to Doctors without borders to build schools and latrines for poor children in Cambodia. 

Word was even out that she would be the new face of South Side General Hospital on a billboard 2 miles from home in Cumming, Georgia. The same city in Forsyth county which was called out by Oprah just 25 years ago for not having a single black man living in it for 75 years. So, at 38, she had made it. In just 14 years, Hema had married and come to America with her husband, bought a 7000 sq. ft home, became a mom of two lovely boys and a well known physician in South East America. 

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And then it happened one day in 2013, after 6 months of denials, violent eruptions at parties and reports of anti social misbehavior from the day care. The doctor looked at her and said. “We think he might be on the spectrum.”The first day at therapy was almost like Hema was watching a sad movie. “Touch your nose. Touch your nose, Arjun. Touch your nose for me, please.” The therapist went on and on but there was hardly any reaction from Arjun. “Can you play with this car on the red slide for me, please? Can you come give me a hug? Look at me Arjun, look into my eyes and tell me how is your day going?” 

A few sessions later, the doctor’s diagnosis was official. “What he has is not reversible, but only manageable. He will need therapy for a long time. He will need help with navigating social aspects of life for the rest of his life. 1 in 50 will be diagnosed to be on the Autism Spectrum Disorder this year. The chances of occurrences of developmental disorders have always been high in boys. ” 

That evening Hema called her mother. It was early morning in India and she told her what the doctor said. “Amma, Arjun is autistic. He’s on the far extreme side of the spectrum. They call it, CDD – Childhood disintegrative disorder. He’ll need special classes at school and also hours of therapy every day for the rest of his life. And Srikanth is in denial. He’s not treating this like its even an issue. I’m worried its going to affect Aditya’s life too. It feels like I’m in a nightmare.” Her mom said, “Don’t worry Hema, I’m sure he’ll get better. Remember how he started walking only when he 15 months old? And look at him after that, we can’t stop him. He never sits down! You are always so worried that he’s not mouthing small words and saying his alphabets. But he’s just 2 and a half. Give him some more time. Some children take their own sweet time to develop. Let me know if you want me to come and help until things calm down.” 

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Almost very rapidly in a few days after that, Hema started seeing a difference in the quality of her social life. She had made the mistake of confessing in a “good” friend and invitations for parties and social events soon evaporated. It didn’t help that one day, a couple of months in January, a neighbor had knocked on their door to complain that if “Your boy doesn’t get back in the house right now and get fully clothed, I’ll call child protective services. Its freezing outside!” When she looked over the shoulder of the neighbor who was yelling at her, she could see Arjun running and singing at the top of his voice in the cul-de-sac with just his shorts on. That day would turn out to be one of the coldest days on record for Atlanta’s winter. 

Hema continued living like that expecting things to change. But, the leader that she was, she asked around for people who were parents of children with developmental disorders and started a Whatsapp Group for them. While regular parents exchanged stupid jokes and seasonal greetings, the parents on her group sent one another statistics on autism. “By 2023, the autism related expenses for America are estimated to be 26 billion dollars.” or “Most children of autism of the 1990’s are now spending their adulthood severely medicated in psychiatric homes. Many have been homeless because their aging parents can’t afford to take care of them physically and financially.” or “There’s a severe shortage of group homes and government provided assistance for young autistic adults in their early 20’s. Something has to be done.” 

Along with those statistics, she learnt a lot from the other parents who were on similar journeys. She found out that most of the parents were very high functioning like her and had very stressful careers. Especially, the mothers, who were almost always doctors or scientists and had relatively late pregnancies. Those facts haunted her. “Was her stress during her consulting career as a jet setting physician the reason for autism in Arjun? ” 

What about the other mothers, some of them had pretty stressful pregnancies too. A couple of them were doctors who were in their residency program and later gave birth to children who were diagnosed with autism. She found comfort in parents who had both their children diagnosed with being on the spectrum. “Atleast, I don’t have it as bad as them.” She would feel pity for herself and them that this is the kind of parental comparison she had resorted to. 

She took Arjun for 6 hour therapy sessions and counseling. She looked for enriching after school programs for him and Aditya and drove them everywhere. Aditya was a video game wizard at such a young age, she would often hear Srikanth say. Strangers and teachers at Aditya’s school were telling her about how gifted he was. He also had won the county’s Science Olympiad competition. And taking him to the state level championship meant a lot of sacrifices, but she was going to do it. She did all this while working full time and on call some weekends for the hospital. She cut down significantly on the number of hours she worked, but that was her only outlet, her identity – being a doctor. And she could not give it up entirely, not just yet.

For 10 weeks in 2016, she had even taken a sabbatical and moved to Jacksonville, Florida for the summer to enroll Arjun in a very special program for severely developmentally challenged children. Srikanth would drive Aditya every weekend to Jacksonville to visit her and Arjun in their apartment, but that only meant more work for Hema. Srikanth must be in complete denial because he was emotionally unavailable to her and her boys, especially Arjun. Atleast that’s how Hema felt. Without any emotional support from her husband, she felt like she couldn’t keep up with this life style after summer. So, she packed her bags and came back home with Arjun after 10 weeks. 

Her favorite time with her boys were when they would all cuddle up in their basement and watch Telugu movies. They did this mostly on Friday and Saturday nights. Sometimes Srikanth would join them too. That was the only time when she would sit peacefully between Arjun and Aditya without worrying about Arjun’s next move. The boys would sit there wrapped up in fluffy blankets and be transfixed to the screen. And during those couple of hours, Hema would wonder if there was a chance for her life to become normal once again. 

There were other good times too. Only two of her normal friends had stayed in touch after the diagnosis. Their children were good friends with Aditya and Arjun way before all this happened. And Arjun was still welcome to walk into their homes. These friends had told Hema that she should not worry if Arjun was touching or throwing or breaking any stuff. And even if he did, it would all be OK. She would always walk out of their homes wondering if she could have been that friend if the roles were reversed. 

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Nothing happened even after a few hours into her Facebook post. Just one like from an uncle in India. “Did he even notice what Arjun was doing to our family?? ” Hema was irritated at that thought. And then her phone rang at 7 in the night just as she was driving back home from dropping Aditya for a sleepover at his friend’s house. Hema’s mom must have seen the video. She pulled over to the side of the road and parked before answering the call. Arjun was in the backseat mumbling something. “Hema, what’s going on? Why did you post that video? Please remove it. Arjun is a nice boy, he is just being naughty. People will misunderstand.” Hema’s mom sounded agitated. 

That was it. Hema didn’t hold back anymore. Mom, you always ask me to calm down about my expectations of my children. Mom, Arjun can’t even tell his numbers from 1 to 20 and he’s 6 and a half years old. I want to show the world how my world really is. Because a friend asked me yesterday night about what’s wrong with Arjun, ‘He looks so normal, he doesn’t even have that down syndrome face, you know.’ Mom, you always had high expectations of us and always demanded that we become doctors. You never asked us what we wanted. All our lives, all your three children have been working to meet your expectations. But, now you don’t want me to have any expectations from my children?? All I want to is to have his attention a few times a day and tell me ‘I love you, mom.’ How can it be too much to ask??” And then she hung up. 

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