LOOKING through the family album, especially the ones with everyone doing their special poses and freestyles, I noticed that my niece almost always had her arms around her son; in almost every picture since he was 3 and until now that he has grown even bigger than her pint-size self — the grip, if anything, seems to be even tighter.
“Look at pictures of any mum with an autistic child. We all have the same pose, arms around our special children,” she said and I could almost hear her laugh, for what else could she do.
After the first wail that could be for anything from self-pity to self-blame since learning that her then 2½-year-old son was autistic, she and her husband and, in fact, the whole extended family began a journey of discovering and understanding a condition that was to become a preoccupation and a never-ending worry. Acceptance was never a choice and giving up was never ever entertained.
After the case of Ahmad Ziqri Morshidi, the 22-year-old autistic man who was detained for allegedly touching a young woman’s breast, I messaged my niece to discuss a fear that never strayed far from our minds.
“I am living it — I am living with that worry all the time,” she messaged back.
Her son is now 16. When her second son was diagnosed as being autistic, both she and her husband went to the Autism Treatment Center of America and followed The Sonrise Programme to learn how to cope. She gave up her job and concentrated full time on him.
“With autism the only predictable thing is the unpredictable,” she said.
No matter how equipped you think you are with reading materials and looking out for signs of moments of meltdowns, the unexpected always happens. No matter how tight the grip.
I remember the time when the whole family combed the neighbourhood when the then 8-year-old couldn’t be found anywhere in the house.
The grandmother ran around asking neighbours, the brother ran down the road calling his name, and the uncle drove around and finally found him queueing up at 7 Eleven to buy Slurpy.
Since then she sewed tags on all his items of clothing; with his name, contact numbers, as well as explaining that he couldn’t communicate like other children.
As he grew older, the great escape was the least of their problems but it overshadowed his other obsessions like peeling off labels from food cans in the cupboard.
Flapping his hands and farting loudly in public paled in comparison with what was to come.
Two days after Ziqri’s case hit the media, my niece was contacted by the school to say that her son had acted aggressively towards a teacher who, as a result, had to be sent to the hospital. Fortunately, she wasn’t injured and more fortunately, the school and the teacher understood his condition and didn’t take any action.
“That is my current worry. He doesn’t know his strength but he has figured out that he could use his strength to his advantage. Luckily, his meltdowns are few and far in between, but it is still a worry. What if he did it to someone in public?” she asked.
Ziqri’s case has highlighted how little people understand the problem of not only people with autism, but also their families and also people who are unwittingly affected by their actions, and in this case, the young girl. Apportioning blame seems to be easier than understanding the problem.
It has also highlighted how little we disregard the fact that special needs people, too, have to go through adulthood like everyone else. They too have raging hormones which even the best of us had found hard to control. And they, of all people, need help to address these issues.
“We have had sleepless nights about this,” she said, adding that being a member of a mothers’ support group does help. They exchange stories about a child who is obsessed with pulling out his teeth and another one who thought nothing about undressing in public and jumping into the pool.
The school, too, has been a great help in addressing the issues of adolescence.
“Since puberty, he has had mood swings, he sometimes cries. He has heightened sensory issues with extra hair in all the private parts that takes getting used to.
We could see signs when he started touching himself. The school has taught him and us a lot of things. He needs to know to address it appropriately and that it is something private. No hugging of other people other than family members.
Since he was small, he wasn’t allowed to be bathed or dressed by the maid.
“I believe that this way, kids, especially boys will learn the boundaries. They won’t think that they can touch women just because women touch them when they gave them a bath or dress them up. But it is not easy,” she added, mindful of the fact that even when she thinks it was all right to loosen the grip or let her guard down, the unpredictable would and could happen.
Tini Yahya knows all these too well. One of her six children is autistic. However, throughout her daughter’s growing-up years right up to puberty, she has had the benefit of free schooling and counselling in the United Kingdom where she was pursuing her PhD.
She remembers very well the great escape her daughter made on the London transport and the numerous times she nearly burnt the kitchen down because she wanted to use the microwave oven that exploded. But nothing beats the problems she has had to face as her daughter started menstruation.
Although the school had prepared her on how to use the sanitary pad and how to dispose of them, one must try to understand that a special needs child does not feel comfortable having a foreign material close to her skin at the best of times, and especially when she is battling with unexpected changes in her body.
“Since Marsya was 10 years old, every Friday she had a one-hour session at school where she was taught about puberty. They used picture exchange communication system.
“But she still doesn’t like the pads and I have to experiment with other means.”
Referring to Ziqri’s case, Tini hopes for better understanding, especially in dealing with people with autism — a complex neuro-behavioural condition with a wide range of symptoms.
“There’s still a lot that Malaysia has to catch up with,” said Tini, the picture of Ziqri being led away handcuffed playing in her mind. People need to be more understanding, more educated and less judgmental, she added.
Perhaps, both my niece and Tini should write the book that they had mentally drafted in their heads. Perhaps, their experience would help people to understand the world where the only thing predictable is the unpredictability.