The complaints crammed into his diary each day. Another note on how Apoorva was being disruptive in class; wasn’t paying attention; was being hyperactive. Another rebuke about him not responding to a teacher’s call. Another memo on poor socialisation skills. The Chowdhurys just put it down to baby behaviour – their son was only four after all and all kids had their odd phases.
One evening while discussing their son’s habit of walking on his toes with friends they discovered commonalities. One had been diagnosed with autism; now, Arundhati wondered if her son had it too.
What is autism?
“Autism or Autism Spectrum Disorder (ASD) is a disorder in the central nervous system and a type of developmental disorder that begins at the early stages of growth and is associated with malfunction in the development of sensory and linguistic perception hence affects the ability of communication and social interaction,” explains UAE’s Ministry of Community Development.
Generally, autism comes to attention in the toddler age group (between one-and-a-half-to-two-years old. In less than one year there are subtle signs - the child may not be babbling, saying things like ma, da ba, which starts at six months to one year, they have a fixed gaze.
It affects more boys than girls, says Dr Puneet Wadhwa, Specialist Peadiatrician at Prime Hospital, adding, “Generally, it comes to attention in the toddler age group (between one-and-a-half-to-two-years old. In less than one year there are subtle signs - the child may not be babbling, saying things like ma, da ba, which starts at six months to one year, they have a fixed gaze.” Autism however is a spectrum and symptoms and degrees of affectation differ widely.
In then four-year-old Apoorv’s case, he was exhibiting – and was diagnosed – with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).
• Restricted eye contact
• Does not respond to name by nine months of age
• Limited facial expressions like happy, sad, angry, and surprised by 9 months of age
• Does not interact with others during play
• Limited use of gestures by 12 months
• Does not share interests with others (e.g., shows you an object that he or she likes by 15 months of age)
• Does not point or look at what you point to
• Does not notice when others are hurt or sad
• Does not pretend in play
• Shows little interest in peers
• Has trouble understanding others feelings or talking about own feelings
• Does not play games with turn taking
• Restricted or repetitive behaviours or interests
Most people with ASD have other characteristics. These might include:
• Delayed language skills
• Delayed coordination
• Delayed cognitive or learning skills
• Hyperactive, impulsive, and/or inattentive behaviour
• Unusual eating and sleeping habits
• Gastrointestinal issues (e.g., constipation)
• Unusual mood or emotional reactions
• Anxiety, stress, or excessive worry
• Lack of fear or more fear than expected
When Apoorva was diagnosed, he was put into occupational and speech therapy classes. “We were in Muscat when he was diagnosed – I put him in a mainstream school, with a shadow teacher. He was in first standard and in the evening, I used to take him to therapy sessions on school premises – occupational and speech therapy. I called a therapist to our home also for his sensory needs,” says Chowdhury, adding that these sessions were on a need basis and by no means a constant in their lives. “He grew up to be a functional child, he’s verbal; he can speak his needs. He can memorise things very well – he isn’t a classic case of autism. He’s a moderate case.”
When the family moved to Dubai, Apoorva tried a special needs school for two years, before heading back to conventional classes. The shift has had its challenges.
Missing a piece of the puzzle
Apoorva hates pats on the back. And hugs and accidental brushes with people. They agitate him. He doesn’t understand the context of the touch; it’s like a missing piece of a puzzle, confusing. “Mostly he thinks the other guy doesn’t like him that’s why he touched him. He asks me, ‘Why are you touching me?’. About school, he says, ‘I don’t like this teacher, I don’t like that teacher’, maybe the teacher patted his back and he took it in the wrong way and so he comes back and tells these things.
“He says, ‘That teacher shouted.’ Maybe the teacher didn’t shout –their intention was maybe not wrong, maybe they just raised their voice, used a firm voice to control the kids. He doesn’t know how to take it.”
Children with autism, says Dr Wadhwa, are very, very sensitive. “They are hypersensitive to touch and other stimuli – any verbal stimuli; if you shout for instance, they may avoid you.”
“They may show preferences to certain foods only – those that are soft or crunchy; they will develop a particular attachment to particular texture or colour – so they may like one colour so much or dislike it so much that they’ll want it all the time or never. Shape, presentation of food also matters – they get very ritualistic, they will eat the same food and don’t like to try new food, adding to the picky eater label,” he adds.
And they are sticklers for routine and hate change with a passion. Arundhati, sadly found this out the hard way when she was pregnant with her now six-year-old daughter, Aahana. As luck would have it, Arundhati was having a tough gestation period – her husband was in a different country and because of a high-risk complication, she was put on bedrest for months.
She mulls: “When the second child comes, the first one gets insecure, it’s natural. At that time was taking it lightly, thinking if I‘m on the bed then he will also just play on the bed – it was not like that; he was maybe under depression [because] he was very destructive at that time – breaking whatever he got his hands on. He was only seven - eight years old and very hyper. We’ve faced a lot to bring him under control.
“At the time, he was out of school because we were in the middle of a transition, my husband had moved to another country, and I was waiting in another country without my husband there… only my parents were there – so it was a traumatic condition for him and for us. We faced a lot because of this. He couldn’t understand why I couldn’t feed him or take care of him … changes bring a lot of issues in behaviour. For changes, you need to inform them [kids with autism] beforehand – I remember he was out of control at that time.”
Over time, Arundhati noticed her child lashes out more when she’s around – she attributes this to a sense of trust in her; that ‘mum will handle things’. But as he grew, so did the outbursts and finally, Arundhati had to make a tough choice: to medicate or to let things be. She had been advised medication before but had tried to manage without it; as puberty hit and he got stronger, she found herself reconsidering her position. “I can’t handle him when he gets angry – when he’s not understanding anything, hits others, breaking furniture, photo frames… I thought of giving him medication to control his own brain.
“You know, sometimes when he does these things – meltdowns – he also says, ‘I need help. I need help’. Maybe because he is unable to control his own mind, his own behaviour. That’s why I contacted a psychologist and she said, ‘Yes if the behaviour isn’t stopping and he’s becoming destructive, he needs a psychiatrist, he needs medication.’ It’s been six months since then and things have been calmer.”
- Difficulty in understanding indirect speech, jokes, and humour. This might lead either to recurrent fights or bullying occurrences.
- Difficulties in reading social cues which makes it more challenging to make and keep friendships.
- Difficulty in adjusting to a group setup, needing either to be in control or withdrawing fully from the group.
- Difficulty in emotional regulation leading often to meltdowns or increased frustration.
- Need for routine and sameness; small changes might lead to increased anxiety and difficulty in adaptation.
- Particular voice and use of language.
- Very high interest in specific subjects or topics. Some children might spend months watching videos about a specific topic, learning all its vocabulary even when it’s very technical or too complicated, and knowing all about the latest research in this field. On the other hand, their knowledge in other areas can be limited.
‘Not a normal family’
It hasn’t been an easy journey, says Arundhati. “There are definitely relationship problems. We got married and had an early child [with autism], so we couldn’t develop the kind of relationship a normal couple develops over time – because we were always tense, we were stressed, we have been dealing with lot of issues … all the time thinking about the child, which school will he go to? Where will he study?” she says.
But most of all, she wonders, “What is he going to do after us?”
The onus is on a six-year-old. “As a sibling – these siblings [of autistic children] are also different from other siblings – they grow up either more compassionate and helpful or very rebellious, if the parents couldn’t behave equally towards them. So we always to try to give equal attention to both of them. It’s not like he’s a special needs child so we need to give more attention to him. If the little one complains, we are not going immediately and punishing him – we ask her questions and then decide whether to react or not and how to react. We are maintaining balance. Both are equal in our eyes,” she adds.
There is a severe dearth of awareness of the disorder, says Arundhati. “When he got diagnosed we didn’t know, we were not aware of what autism is. That’s why he got diagnosed very late – he should have gotten diagnosed when he was around 2 years or 18 months old. But because I didn’t know what autism was, it was very difficult to see. Slowly, we’ve got to know about it.”
The diaries from school were not complaints, they were records of an undiagnosed disorder – a map to a diagnosis, leading to understanding and resolution; homework, of a sort.
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