“Living with autism in the family brings with it a gamut of emotions.”
Raymond: Of course I don’t have my underwear. I’m definitely not wearing my underwear. Charlie: I gave you a fresh pair of mine to wear. Where are they?
Raymond: They’re in the pocket of my jacket. Here.
Charlie: I don’t want them back.
Raymond: These are not boxer shorts. Mine are boxer shorts. These are Hanes 32.
Charlie: Underwear is underwear, Ray.
Raymond: My boxer shorts have my name and it says Raymond.
Charlie: All right, when we pass the store, we’ll pick you up a pair of boxer shorts.
Raymond: I get my boxer shorts at K-Mart in Cincinnati.
Charlie: We’re not going back to Cincinnati, Ray, so don’t even start with that.
Dialogue from the movie Rain Main
THESE snippets of conversation between autistic Ray (played by Oscar-winning actor, Dustin Hoffman) and his brother Charlie (Tom Cruise) in the hit film Rain Man is a poignant window into how an individual with autism perceives life and the world.
In fact, Hoffman’s Oscar-winning portrayal of the autistic Raymond Babbit was based on close observations of two real-life individuals with autism. There is so much more to understand about this condition and this movie certainly did much to bring our attention to the cause.
As anthropologist Roy Richard Grinker stated: “The success of that movie, which parents of autistic children in every corner of the world have seen, certainly didn’t hurt autism awareness.”
AUTISM AWARENESS MONTH
Autism Awareness month kicks off this April with the aim to promote acceptance and to draw attention to the tens of thousands facing an autism diagnosis each year. The rallying cry of “Light It Up Blue” helps shine a bright light on autism as a growing global health crisis and give a voice and recognition to individuals diagnosed with autism.
Autism is a complex brain disorder that inhibits a person’s ability to communicate and develop social relationships, and is often accompanied by extreme behavioural challenges.
In 2007, the Centres for Disease Control and Prevention found that autism spectrum disorders are diagnosed in one in 150 children in the United States, affecting four times as many boys as girls. In Malaysia, according to the National Autism Society of Malaysia, it means that approximate 9,000 children are born with autism every year. The diagnosis of autism has increased tenfold in the last decade.
CDC has called autism a national public health crisis whose cause and cure remain unknown.
MYSTERY OF AUTISM
While the subject of autism is better known today than maybe years ago, it still remains a subject that poses more questions than answers. No two children with autism are alike. The term Autism Spectrum Disorder reflects that fact. Even though each individual with autism has difficulties in the areas of communication, socialisation and flexibility of thought, each has a unique combination of characteristics and so may seem quite different.
For every parent who has an autistic child, the journey is often fraught with challenges, endless research, trials and errors as they constantly seek out ways to reach out to their child. For a child with autism, the feeling of isolation can be overwhelming when one cannot communicate or understand one’s surroundings. It’s a journey that both parent and child take together to get past the murky isolated world that autism imposes.
Homemaker Gulshan Kaur, 44, recalls the difficult years when her son Harvind Singh, now 16, was first diagnosed as autistic. “When Harvind was born, we didn’t really notice that he wasn’t hitting the normal milestones as a child. We downplayed it and thought that it was probably normal for boys to develop slowly”
Soon after, there were unmistakable behavioural traits that pointed to something more serious. Harvind stopped talking and seemed to retreat into his own world.
“That was enough for us to take him for a thorough check-up, which included referrals to the paediatrician, ENT (Ear, Nose & Throat) specialist and a child psychiatrist. It was the latter who directed us to Calvary Victory Centre — we were staying in Johor Baru at that time — a non-profit organisation in JB which caters to the needs of children with ASD. Harvind remained there until he was 10.”
She adds: “When we first discovered that Harvind was autistic at 4, we went into denial for about a year. We just didn’t do anything about it, feeling overwhelmed that our son had been diagnosed with something we knew nothing about. Once we came to terms with the condition, only then did we get him the help he needed.”
“It’s definitely hard for parents to accept that their child has been diagnosed as autistic. Denial is a normal occurrence,” chips in Reshma Yousuf, a businesswoman and trainer, who had joined us on this sweltering afternoon to share her story. “It was tough for us as well. I remember having to deal with a callous paediatrician who bluntly told me that my son Zareen couldn’t be treated at all and that nothing could be done. He also pointed to my tummy — I was pregnant with my second child at that time — and warned that my unborn child could have autism too. I ended up crying in the parking lot of the hospital compound after that, feeling completely distraught.”
Pausing, she recalls: “Looking back, I had a difficult pregnancy with Zareen. It was also a difficult delivery and he was a colicky baby. He had a weak immune system but nevertheless, he was hitting all the normal milestones, walking really early at 10 months and started talking and singing nursery rhymes soon after.
“Then one day, he switched off. He disappeared slowly and gradually into himself. I remember coming home in the afternoon from work and instead of being greeted with a kid running around, I found him sitting still and staring fixedly at the grass. Soon after, other behavioural traits pointing to autism cropped up.”
Both mothers agree that resources and information back then were far and few between. Says Gulshan: “At the time Harvind was diagnosed, we faced so many challenges. Not just with the diagnosis, but the fact that financially it was challenging as well to even begin to address Harvind’s condition.” She adds that as a result of that, they were inconsistent with treatments.
Reshma recalls joining a small support group of parents called Parents for Autism (PR4A) in Petaling Jaya. “We heard about Applied Behaviour Analysis which was a widely recognised method in building useful learning skills for children with autism, which was not available here. We all pooled in our money and brought a consultant/therapist down.”
Adding, she says: “We put in lots of money and it took a lot of time. We get three days with the therapist and she tries to teach you everything, which you then have to continue on your own without any help whatsoever, with photocopied notes.”
RESEARCH AND INTERVENTION
Parents often have to scour through much information and dive into research to get the appropriate help for their children. Recalls Reshma: “Zareen is usually docile but there was a time when he was getting close to puberty, he started to change. From the soft docile person, he regressed to becoming rougher. He was also putting on weight to the point of obesity. I went on the Internet and found this carb-free diet which I put him on immediately.”
It took three months before her son recovered. “Everything that he had forgotten, he picked up again. We were amazed and pretty chuffed at this small victory”.
But it was a holiday to the UK that changed things dramatically. “He blew off his diet on this trip. When we returned, he had that one slice of cake which was the tipping point. Zareen went completely berserk. He started having massive meltdowns and even seizures. It was during that desperate episode I stumbled upon an article in the local daily by Marissa Bagshaw who spoke about Biomedical intervention and how it had helped her autistic daughter tremendously. What she wrote about resonated deeply”
She quickly made contact with the author, and did intensive research on the benefits of Biomedical intervention. Both mothers spoke at length about Biomedical intervention and how it has helped their children make progress. Confides Reshma: “I’m grateful for this method as Zareen was already at a tipping point. If we had not intervened, he’d have had a seizure that could have been fatal and we’d have lost him.”
Food sensitivities, vitamin and mineral deficiencies, intestinal yeast overgrowth, gut and brain inflammation, allergies, gastrointestinal problems, and heavy metals are among the litany of medical issues that can be associated with autism. Biomedical interventions are non-drug treatments consisting of vitamins, minerals, probiotics, essential fatty acids, amino acids and naturopathic remedies which seek to address these medical issues.
“Today Zareen has made remarkable progress,” says Reshma with pride. “He’s extremely independent. He was what I used to call non-verbal though I’d choose not to use that term on any autistic child because they do have language. It’s only hindered by what I believe is due to a lot of health issues that are not helping. Zareen’s language is now picking up and he’s doing a lot better now.”
With a smile, Gulshan adds: “Harvind used to have sensory issues when he was young. We couldn’t take him outside the house. Shopping complexes were a big NO. There have been tremendous breakthroughs since then, especially in terms of communication. There are times when we do recognise the words coming out from his mouth, and he’s learning to communicate. There have been challenges getting to where he is today, but we’re thankful for his progress.”
HOPE AND LOVE
The journey with autism in the family has given the two women added dimension to their lives. Says Gulshan: “Harvind has changed us a lot. He has taught us patience and compassion. My eldest daughter now wants to pursue a career in psychology.”
A brief pause ensues before Reshma continues poignantly: “I guess you learn to feel grateful for the simple things that you tend to otherwise overlook. I call children like Zareen ‘sages’ and they’re God’s little messengers to remind us not take our lives or the world, for that matter, for granted.”
Relating an experience during a recent family trip to Cameron Highlands, Gulshan shares: “A complete stranger, upon seeing Harvind hugging and kissing his father, remarked that this was the first time he was seeing love displayed in its purest form.”
As the minutes tick, Reshma concludes wistfully: “I hope that Zareen will eventually live a partially independent life. I’d love him to be fully independent — that’s my dream and I’ll never stop dreaming.”
Published in the New Straits Times, April 4, 2016