Isaac - circa 1998

The debate on AP on vax and autism has brought back some sad memories. Joshua's note on AP made me think about the time when Isaac was first diagnosed by Dr Opitz so many years ago.

After mum had highlighted her fears - right at the chicken riceball place in Malacca (till today I cannot eat at the place without recalling that moment) - it was as if a light came on in my mind. I knew almost instinctively that was what was wrong with him. We all knew something was not right but could not put our finger on it. His temper tantrums were fierce and frightening and bewildering at times and he was exhibiting behavior we could not understand - we chalked it down to quirky but we were always uneasy. The word autism never occured to me. Apart from Dustin Hoffman in Rain Man, I'd never seen anyone who was autistic - and even then, Hoffman is just an actor. But once the words were out of mum's mouth, I knew that was it. It explained a lot.

I went home and did research on the web. What I read was sobering, terrifying and depressing. I saw Isaac in all those descriptions. He fit the profile. KH and I talked about it. Everything I read and knew about autism pointed to it being a life sentence, requiring lots of care. How would we do this? How could we afford this? What will happen to him next time when he got older? I felt angry that this happened to me, to my son, guilty because I thought I did not spend enough time with him, so maybe it was my fault. I felt sad for him and for us. I worried a lot. It seemed so insurmountable, so hopeless and so permanent. I never wanted to have another child - what if s/he turned out to be the same? It was not until Isaac was 5 and it was clear that the tide was turning that I felt optimistic enough to try for another child.

We were clear on one thing back then - we could not sit and wait and do nothing. So we called the Autism Association, we called special schools and everywhere the queue for diagnosis was so depressingly long. It was a lady at the Association who finally pointed us to Dr Vera Opitz at the BICC (Behavioural Intervention Centre for Children) at NUS. She agreed to see us, give us a preliminary diagnosis so that we could decide what to do from there while waiting on the KKH queue for a formal diagnosis.

I remember bringing Isaac and Gillian to the observation centre, a nondescript room in the Arts Faculty. Isaac and Gillian played with the toys scattered around while Dr Opitz observed him, tried interacting with him, watched him play, talked to us. I felt hopeful one minute and despairing the next, thinking sometimes: oh he doesn't look too bad - see he's not lining up cars now! And then my optimism would plummet the next when I saw that he was not even looking at Dr Opitz.

When the session was over, I remember feeling very tense as Dr Opitz spoke. Yes, she said, confirming our worst fears, he does display many signs of autism. Autistic tendencies, she called it, since it was too early at the age of 2 to say conclusively that it was autism. The good news is, one can do a lot with early intervention. She told me to read about Behavioral Therapy - Dr Ivar Lovaas' work. And she told me to read Catherine Maurice's book "Let Me Hear Your Voice". Maurice is the mother of two autistic children - who regressed into autism but who later 'recovered'. She had used a lot of BT and other therapies in her quest to help her children.

I went home, went online and ordered the books from Amazon immediately. Reading Maurice's experience, I could identify with her so well - the fears, the sadness, the bewilderness, the determination... but her story also gave me hope - her children recovered. Impossible though it was, they did.

But reading was not enough. We had to do something more concrete and that was behavioral therapy. Reading Lovaas convinced me then that BT would be the way to go since he had published a study which claimed that BT showed results. But who could do it? How much would this cost? How long? Maurice did BT practically everyday. But she was well-off compared by our standards and she had trained therapists coming everyday to do this. The research from Lovaas was also clear - doing BT everyday gave the best results. But for us, this would be a real drain on our finances. We honestly didn't know where to go and who to seek help from. So I called Dr Opitz.

And she sent me Melissa.

Quiet and observant, Melissa was there in the room interacting with Isaac during the observation. But I never noticed her. I was too busy listening to Dr Opitz and working out my emotions and thoughts that I never even registered her being there. But Dr Opitz recommended her, and she was trained in the principles of BT. (Years later, last year to be precise, when looking through our old photos taken during Isaac's observation session with Dr Opitz, I saw Melissa there! I showed it to her and we both marvelled at how things were back then!)

When KH and I first saw her, she was this young, thin, lanky girl with long hair with freckles, in jeans and t-shirt and a very teen-like demeanour. She looked like someone so young, so fresh out of school and so (sorry Melissa if you're reading this!) inexperienced. We wondered how she would do this, could she do this? Still, she came highly recommended by Dr Opitz, and the lines elsewhere for therapy and diagnosis were still as long as ever. There was nothing to lose, so we took her on.

I remember the first session - she would sit in the room with Isaac, door shut. I waited outside and listened to Isaac screaming his way through the session. Listening to him from the other side of the door, I think that was the first time I cried since the beginning when mum first hesitantly told me her opinion in Malacca.

Melissa first worked on trying to get Isaac to sit down and look at her. Because if he can't even sit, no work can be done. BT involves the use of behavioral 'drills'. Rewards are given for appropriate and desired behavior and adversives for non-compliant behavior. If this sounds very robot-like and mechanical, I suppose it is. It's not about reasoning or understanding, it's about getting the desired behavior (eg eye contact or appropriate social behavior) and eradicating the undesired behavior (eg stimming or echolalia). I don't like the use of adversives and I have read of therapists who use physical adversives on children. I am happy to say that we never got there because Melissa found adversives just as distasteful as I did!

She was incredibly patient with him despite his tantrums. She saw him twice a week initially. We could not afford more. She would write reports about the session (we still have files full of these!) and on our own, KH and I would try to practise the drills with Isaac.

Still, the tantrums and screaming continued for many sessions. Then one day, it just stopped. And change slowly began to happen.

Meanwhile, we also looked at other ways - Glenn Doman's Institute for brain-injured children in the US (a very costly option that included travelling there and going through therapy, learning what to do and applying it upon return - we could not afford this), diet therapy (tried the GFCF for a while but it did not seem to do much for him) and so on. So many ideas were coming out of the woods we didn't even know what was quack and what was kosher.

Isaac went on to have BT with Melissa for many years - all the way until he was in P2. By the age of 5 or 6, he had lost a great deal of autistic behavior. That was when we finally got to see the psychologist in KKH - gosh what a long wait! - and by then, the psychologist could not say conclusively that he was autistic anymore - he was reading well, slightly above his peer group, he had some eye contact, he seemed more social... but at the same time, the psychologist also could not say for sure that he was NOT autistic. Simply because there is no 'getting out' of autism. Once autistic, always autistic. And it was obvious from the notes that Isaac had many of the signs. Early intervention can do a lot - raise the functioning of many an autistic child to a higher level. But the understanding is, one never gets free of this.

We were euphoric then. We were, are, so grateful to Melissa. Till today she insists it was not her work, that he was just 'understimulated', but also admits that he did show a great deal of the signs of autism. She can't explain it and we can't explain it. But by the grace of God, Isaac has done very well.

Today, looking at him, I see a kid who is as 'normal' as they come. Everyone who meets him cannot see him as autistic, maybe will not believe me that he ever was. But being his mother, and knowing what came before, having seen him the way he was... I can only be thankful and say he's pretty much okay today and far better than he ever was.

There are still faint shades of old behaviour that I see - he still stims with his fingers, he still echoes faintly once in a while, he still appears aloof, not able to read social cues well, he still speaks in a monotone from time to time, his eye contact is still not voluntary (we have to remind him) and he generally comes across as 'eccentric' but not overly so. He's normal enough to gain acceptance in school, to make friends etc. But spend enough time observing him and you'll know what I mean. His teachers do. After a while, they all ask me if there's something not quite right with him. I say today that I think he is still 'autistic' but on a very high-functioning end. He certainly fits the definition of a high-functioning Asperger's boy.

I've talked to Isaac about his past, shown him pictures, Melissa still gets together with our family once in a while. I tell him he is one special kid. But I don't think I can forget how I felt back in those dark days.

So what caused it? Was it a genetic disorder? The fact that I didn't breastfeed? Was it the early cord clamping (which Morley associates with autism)?

I don't know. Could be all of the above? None of the above? But in terms of vaccines, I dare not say it was not and then blithely go ahead and give my other children all the jabs in the schedule. To me, that is tempting fate that lightning would not strike a third or fourth time in the same spot. Knowing what I know now, there are too many doubts about vaccine safety issues. My time with Isaac was frightening enough, I don't want to take the risk.

I think all parents must consider all the pros and cons well before they make such decisions. I say this on hindsight because as a first-time clueless mom, I never knew I had the right or power or the information to make such choices. As I posted in AP, if a child does get adversely affected, the ones living with the condition are the parents, the family, the child himself. NOT the government, not WHO, not the CDC or FDA in the US, not the vaccine manufacturers, not the doctors and nurses and paediatricians who would be so quick otherwise to condemn a non-vaxing mother.

Where I am in control and I can make the decisions, I will. If it is a genetic thing, then this is out of my hands.

I know vaccines do not stand alone - there may be other plausible environmental causes. But given the huge amount of information now coming out on vaccinations, knowing full well via my work in breastfeeding and birth, about how money and politics can subvert medicine and corrupt good intentions, I can't help but be sceptical. Until and unless I see a randomised controlled double-blind long-term study that proves vaccines are safe (there aren't any now and there very likely will not be any in the near future either), I guess my mindset will continue to stay this way. Ultimately, my main aim is to protect my child's well-being and if that means being kiasi or kiasu or anti-social... well that's just the way it is.