An autism dad’s honest story of managing adoloescence and puberty with a positive attitude. Journalist Bhanu Pande shares his experience of pro-actively preparing himself and his son for growth spurts and physical urges to raise him into a responsible and independent person. #FathersDay
It’s hard to be an autism dad. And there’s no getting around it. I had turned reclusive during our early days as a newbie, in autism land. Let alone my interaction with my friends going through parenthood, I had limited interaction even with autism families.
My son, Tanmay, has autism. His behavior was distinctly ‘different’ from regular kids. His hyperactivity and non-verbality had been a constant source of embarrassment for me. Today, I can look back with amazement at my own thought process of being socially embarrassed.
Shedding the Negative Attitude
Thankfully, as Tanmay grew older, my negativities started giving way to a more positive attitude towards his diagnosis of autism. I began to socialize a lot more with autism families, especially Dads - sharing notes, my apprehensions, listening to their experiences and absorbing their ways and methods of dealing with every challenging situation. I made it a point to specifically keep contact with autism fathers, whose sons were much older to Tanmay. They would give me practical advice, feed me with faith and encouragement about how his future years might unfold. Most of the time, it turned out to be true. After all, they were years ahead of me.
Clearly, forewarned is forearmed.
Challenges of adolescence
While these interactions helped immensely, they also brought with them a sense of apprehension to watch out for during the adolescent years. Regular teenagers have their own hormonal changes during adolescence resulting in rebelliousness, irritability and condescending attitude towards authority. With Tanmay it was bound to be challenging as he is non-verbal, low on cognition and faced difficulties in expressing himself leading to many frustrating moments.
We all know people with autism have multiple sensory issues which they often find difficult to cope with. Hence they resort to aberrant and repetitive behavior patterns (referred to as stimming) like swinging, jumping, flapping and spinning which helps them ‘feel better’. Besides, adolescence also brings with it both visible and invisible changes in the body that makes it a double whammy for the person with autism and their families. This is true, for both autistic boys and girls.
As Tanmay was about to step into his teens, I happened to engage with a father whose narration left me petrified. His son was uncontrollable, aggressive and violent, sometimes self-injurious. This 14-year-old boy was experiencing severe challenges in social situations, and the neighbours had completely alienated the family. That was just one anecdote, but I heard many such adolescent stories over the next few months about autistic teenagers and often saw their behavior and issues with my own eyes, at Tanmay’s intervention centre. I was disturbed and paranoid.
Seizures and autism
Tanmay finally turned 13. He was now officially a teenager and an adolescent. Another worrying fact that I had learnt that left me jittery was that 40-50% of autistic teenagers, mainly boys, have instances of epileptic seizures. And that happened soon. Tanmay had his first seizure barely 6 months into his thirteenth year. We got a call from his evening school about the seizure and that set me off on controlling his movements for some time. His uncooperative behaviour at the hospital that day with doctors, also gave me a cause for alarm. That was the time I began living a life on the edge as an autism dad of a teenage boy.
Preparing to be a dad of a teenager
There were many other things that crowded and cluttered my mind then. Tanmay was a big boy with a good physical frame. As his body was growing fast, a female caregiver could no longer be a solution. I was against the idea of a full time male caregiver as I had heard gory tales of sexual abuse in the past. We needed to explain the bodily changes to this non-verbal boy, with his poor cognition skills. But I realized that it was critical now to hammer the concept of privacy, sexuality and his needs. Any inappropriate behavior would have snowballed into a social issue.
Even though, we were a family of three (Tanmay, my wife, Mona, and I) with a robust support system of brothers and sisters, I still felt lonely. This was a task which had to be taken on much more by me. We discussed this at home and were clearer that these years of Tanmay needed me to take a lead on getting involved with his daily living skills and give him an entire support system which will help him tide through his growing up years.
Emerging physical urges
Thanks to all learnings from other parents and fathers and with some really great inputs from his teachers, we were proactive with Tanmay’s puberty with a strong physical and social story programme for him. We consciously increased his structured activities which kept him busy from 8 am to 7 pm with a combination of at school and at home activities. We were successful in seeing him pick up swimming and move towards independent walking-running. We had failed attempts with skating and cycling, but we took a lot of help from OT (occupational therapist) specialists to help Tanmay use his energy levels and get a good night's sleep, as advised by people with knowledge and experience with autism. Home visits by the OT to give him deep pressure and joint compression massage also helped him calming a lot.
Similarly, ‘touching himself’ had also surfaced for some time. But we would restrain him either by simply holding his hands or with a simple “hands out” command. And, sometimes, even if I remotely feel that he wants to ‘relieve’ himself, I command him to go to the washroom and manage himself in privacy. We have tried our best to not make a big issue out of his urge to discover his own body. Somehow Tanmay has been responding very well.
Teaching concept of privacy
We had actually started working on the concept of privacy much earlier with Tanmay, thanks to my wife’s growing awareness about autism, Tanmay’s school and parent training workshops. Use of the washroom and bathing was our first goal. We worked for 6 months to get him completely independent, which meant arranging all his shelves with clothes, toiletries, towel stack, etc. in a structured and predictable way. This independence has ensured that no one enters the room when Tanmay goes for his bath time. It brought so much dignity and independence to his entire concept of privacy during an important activity. Over time, I can see that he has learnt to enjoy this time and be responsible about it, like putting his dirty clothes in a wash basket and hanging the towel to dry out in the balcony.
Small acts but it helps us see him responsible just like any other 18 year old should be. Though parents of regular 18-year olds find Tanmay much more disciplined and compliant, which is another story in itself.
I haven't done anything pathbreaking, but used some bit of common sense along with special education inputs from Tanmay's centre and OT intervention.
Yes, we didn't push or overload Tanmay.
Bhanu Pande is a freelance journalist with 24 years of experience in business journalism. He wrote for The Economic Times and Business Standard.
