Skip to main content
Submitted by PatientsEngage on 8 April 2019

Sunita Mohanty, 48 from Bhubaneshwar shares her journey as a mother of a son on the autism spectrum, dealing with the social isolation and pity and the journey through denial and frustration to acceptance. 

Siddhant was diagnosed with PDD in August 2000.

Pervasive Development Disorder was simply a term which signified that the child’s cognitive, social and communication developmental milestones were lagging behind and were used to indicate an autistic spectrum disorder.

What were the early symptoms? What made you go see a doctor?

Being a first time parent, I really didn’t pay much attention to the fact that my son was not responding to his name whenever I called out to him. I simply put it down to his being more interested in playing with his toys. Also since he had an excellent developmental record for the first two years with his milestones being absolutely on track that I didn’t worry that he wouldn’t sometimes look at me or try and make eye contact or that his repertoire of meaningful words had dried up to a few shrill noises or baby babble. I simply put it down to his being traumatized by the hospitalization and was sure that he would bounce back. Another significant symptom which we should have paid attention to was that he suffered from frequent upset stomachs despite our utmost care in ensuring that the food was fresh, He developed a severe reaction to yoghurt and fresh fruit and vegetables and would refuse to eat or even touch them. This was a symptom which is now known as one of the signs of autism.

I was on a flight from Bhubaneswar to Mumbai when my son became really restless and unmanageable and I had a hard time keeping him still. I was seated next to a kind lady who kept trying to calm him by showing him pictures but he just kept shrieking much to my chagrin. Finally the lady told me that she thought my son was 'not normal' and that I needed professional help. I was very upset hearing this though she gently told me that she was the Principal of SNDT College for Special Education. I had no clue what Special Education meant and was really miffed. I didn’t speak with her until we reached Mumbai. As I was getting into my car at the airport, she approached me again and said that I could reach her anytime and gave me her card. I remember flinging it away in anger.

Two weeks later, my son was afflicted with fever and I paid a visit to a well-known Pediatrician near my home in Prabhadevi. He was completely disinterested in my son’s fever after a cursory check saying it is a viral one and kept observing him minutely and took an hour to check him out. As I grew increasingly discomfited by his sharp line of questioning, he grew more and more serious. Until finally he said, I think your son has Pervasive developmental disorder which is a part of the Autism spectrum and suggested the name of a Paediatric Neurologist at Hinduja Hospital for the next line of treatment.

Please describe your experience of managing his condition.

The first few months were a nightmare of mistakes, hurt, denial and finally acceptance. I do not know who struggled more, my child trapped in a world that was alien to him and to us, or my attempts to reach him and try with all my might and prayers to wish it away. I soon realized that it was not something that would disappear and with that sense came acceptance. My son could not chew. So feeding time was a struggle with my forceful attempts to feed him, and he was grossly underweight. He was also prone to physical violence and biting, so initially I had black eyes and bite marks all over, and almost gave up.

It was also not easy given the social isolation which happened overnight. Friends with kids of the same age kept away and always had an excuse ready to avoid sending their kids over. I saw one mother washing her daughter’s hands after my little one touched her. It was really bad. At times I railed against fate but then my son would look at me with unseeing eyes and my sadness and worry would make him more agitated. I realized very early on that I was going to be the primary caregiver as my husband was in complete denial. He worried about the quality of life our son would enjoy and also his future which at the age of two seemed insurmountable and indeterminate. As he threw himself deeper into his work and tried his best to be there when needed, I consulted Speech Therapists and Occupational Therapists who worked with my son and guided us into a sort of routine.

My meeting with the Neurologist was painful and brief. He confirmed the diagnosis and suggested that we go for counseling. He reiterated that the condition was irreversible and early intervention was the only option. In 2000, Autism was relatively an unknown condition and I pored over material from the internet, did the checklists for symptoms, felt happy when I could cross out the ones that did not describe him and then felt helpless when my son retreated into his own world and wouldn’t let us in. My sisters and parents walked the path with me every step of the way never letting me feel that my husband and I were battling this alone. My mom turned to prayers, fasting for his wellbeing and my dad and sisters were my constant support. When I look back at those dark days of despair, I am so grateful for the love and support my family gave us so unflinchingly.

Three years later, I gave birth to my second child, a boy who was "normal". I quit working and focused on ensuring that Siddhant and my younger one Sarthak bonded well. I feel blessed that my two boys are thick as thieves and it made me stop treating Siddhant with kid gloves. To enforce discipline, it was a uniform meting out of punishment and there were no allowances made for his condition. To my surprise, the method worked and Sid became more aware and struggled to toe the line despite occasional meltdowns. Both brothers have physical fights but timeout is given to both. They love each other and are each other’s biggest support. The younger one has slid into the role of being the responsible older brother. We have a Beagle dog who is the love of Siddhant’s life. He discharges his responsibilities towards her happily.

Sid’s condition showed a remarkable improvement when we relocated from Mumbai to the Philippines. The kinder and more accepting environment in a country that respects disability and sees it as a special will of God to care for a special soul made our lives so much easier. The caregivers and the help participated wholeheartedly in making him feel loved and cared and the change in his behavior was significant. I could almost forget most times that my son had a disorder. The International school that he attended pulled out all the stops and got a battery of educators specializing in special needs students to tap into his potential. He blossomed under their concerted efforts.

Both home and school and social life followed a seamless blend of love and caring for him. The ten years in Manila were perhaps the best years of our lives as my son started speaking at the age of 7 and could read and write fluently too. He discovered his love for computers and is the most tech savvy kid. We also discovered that he can calculate the calendar up to 100 years in a matter of seconds. He has a phenomenal memory of faces and names and dates and time.

How is is his present condition?

Sid is 22 years old and a young Adult. Physically he is strong and works out in the Gym regularly. He enjoys swimming and Dancing and loves to accompany me on regular walks.

He has many Behavioural issues which are related to his emotional make up. He reacts badly to a change in routine and sudden changes. He was prone to physical violence and was verbally abusive. His repertoire of cuss words is extensive which he likes to use indiscriminately. His hand -eye coordination which was an issue earlier has vastly improved with weight training as Autistic persons have weak muscles.

I strongly enforce the Action/ reaction/ consequence method with him to control his behavior. Any inappropriate behavior is met with severe consequences where he is deprived of his favourite things for a certain set period which is irrevocable.

Any related complications?

He had no sense of pain or sense of smell for the first ten years. He had acute food allergies and would harm himself physically. Also he suffered from night sweats and his pillow would be soaked with an oily secretion from his scalp. This condition disappeared a few months back.

Another distressing condition was that by the age of 6years, his genitals were like an adult. I was assured by the doctor that I needn’t worry, but I consulted a homeopathic doctor and his medicines worked like magic effectively normalizing his genitals.

What was his course of treatment? What medications is he on currently?

Sid was given no allopathic drugs until recently. The Neurologists had prescribed Ritalin when he was 2 years but I never used it as it was habit forming. I had consulted a well-known Neurologist in Kolkata two years back after my return to India, who placed him on a low dose of Arip MT. I discontinued it when he started getting auditory and visual hallucinations and became unmanageable.

Another consultant at Apollo gave him Serenace and some other drugs which resulted in a violent seizure in two days of using the medications. I discontinued it immediately.

Currently he is medication free and I intend to keep it that way.

What kind of specialists (including Physio/ Occupational therapist/ Psychiatrist etc.) do you consult and how often?

In the first ten years of his life, Sid attended at least twenty hours of therapy per week. He was attended to by speech, occupational and special educators who worked closely with him.

Since he is no longer on any sort of medication, allopathic or alternative medications, I haven’t felt the need to consult any other specialists. Since there are no symptoms except behavioural and cognitive issues, I deal with them just as a mother would with an unerring or sometimes flawed sense of intuition.

What would you do differently in terms of raising Sid? 

Yes, I feel each child is unique and different.

I wish I had the chance to work with him again armed with the knowledge I have now.

I would have stopped obsessing over dangerous internet checklists for developmental milestones.

I would have stopped lying to myself that my son is fine and would have tried to attend to his silent pleas rather than covering them with little lies that he is in a bad mood and is fine.

I would have stopped comparing and rejoiced in the little miracles that gently touched our lives.

Each effort would have been celebrated rather than ticked off a mental check list.

What changes have you made to your lifestyle because of this?

A special child impacts our lives hugely. I am always with him. If I have to run errands, I take him with me. If I have to attend social events where he is not invited, I ensure that my younger son and the servant is always present though I must admit that Sid is responsible and understands that it is dangerous to allow unknown people into the house. I have educated him with stories and visuals on security and safety. He has his own mobile and is connected with me at all times

Have you tried complementary medicine or therapies, like homeopathy or yoga? 

Homeopathy worked in the initial years. He enjoys gymming which lets him expend excess energy thereby making him calmer.

How did you mentally/emotionally cope? Did you see a counsellor?

My parents and my sisters and my husband and friends never made me feel alone.

I did not see any counselor or doctor. I never realized how the time flew. Each day was a battle and each night was a deep dreamless sleep. At times I was too tired to think but I knew that I needed to get my act together so that my son can cope.

How has your family supported you? Who has been your biggest support/companion through it all?

My parents and my sister without doubt have been my constant source of strength. My husband despite his busy work schedule and frequent travel spends quality time as often as he can. I have a dear friend who I turn to for advice frequently who has seen me through my darkest hours and I am grateful for the love and support given unstintingly by these special people.

How did your friends treat you? Were you isolated? Did you share your experience with them soon after diagnosis?

I experienced sympathy bordering on pity in the initial years. When you have a special child, you can sense the silent exclusion because they don’t know how to behave around you once they knew. I guess your pain is so palpable that people are uncomfortable. In my years in Mumbai after his birth, I was treated with extreme care by my friends as though I was going to fall to pieces. I was touched by their concern but also stifled. Manila was a breath of fresh air where we all blossomed in an accepting social environment.

What were some of the challenges you faced and your advice to parents who face similar challenges?

The challenges are numerous and ordinary and sometimes insurmountable. Even the smallest of chores become a huge task and we never know what lurks around the corner. But the trick is to take each day one at a time and give yourself some downtime as well.

My advice to all parents is to Never Give up, no matter how hard the terrain is and how many times you reach a crossroad. The path is mostly uncharted as the disorder is still a huge research area but you are the best judge of your child’s treatment. I firmly believe that with a special child the umbilical cord is only physically cut but the ties are as strong intuitively.

How has the diagnosis changed your life perspectives and ambitions?

I was a corporate communication consultant with a successful consulting career handling blue chip companies and was earning a monthly income of 4.5 lakhs. I quit working after the birth of my second son as I found it necessary to initiate the bonding process between the two. Also Sid showed massive behavioural changes when he saw the infant child and became insecure.

I don’t regret giving up a good career as my goals in life changed and I have made my peace with whatever is meted out to me as the Will of God.

What keeps you awake at night?

I think the same fear that inhabits all parents waking and sleeping thoughts. The thought of my special child making his way into the world on his own after my death is my greatest fear. As long as I am alive, I can shelter him from the storms that cross his path but once I am gone, how will he cope? The life skills that I have taught him, will not help unless he is in the care and protection of someone who loves him. My younger son constantly tells me that he will look after his brother and I know he will because he is a loving responsible child but he has his own life to live. I worry about his financial security as well and try my best to save for his future so that he can live a life of dignity after I am dead. I hope there will be a good assisted living facility for these adults in time to come.

Condition