Thursday, April 26, 2007

Awareness - not just about severe autism

Recently after ABC's The View and MTV's True Life shows focusing on autism, I've been hearing a lot of parents complaining that the media is not showing more severe cases, with kids displaying more extreme behaviors. "They have to show what real autism is", said the mother of a non-verbal teenager that I know. However, I think the problem is quite the opposite. Before I had my own child diagnosed with autism, this is what I had learnt from reading newspapers and magazine articles, and watching movies and TV shows: autistics will not give you eye contact, do not show affection, rock their bodies and flap hands, hit their heads on the wall on purpose, and have little or no language. So when my child showed NONE of those characteristics, but yet had a very strange pattern of language development (echolalia), and did not point to show and make comments about his interests, I thought he had some kind of speech delay, and an independent personality, but autism was the farthest thing from my mind. "He gives me great eye contact, he hugs and kisses people all the time, he doesn't bang his head, he turns to us when we call his name, he doesn't get overwhelmed in crowded or loud places, there's no way he's autistic!" I thought to myself, after reading a few articles about the disorder. As a matter of fact, one speech therapist saw my son at 2 1/2 years old - when I was worried that he still didn't talk in sentences or answered to questions - and she thought he was a neurotypical that would just turn out to be a late talker.

It took a chance encounter with an elementary school teacher a couple of months later to open our eyes to our son's autism. He was a friend of a friend who happened to show up at our house, and expressed his concern to my husband when he noticed my son's repetitive play, scripted language, and aloof manner. That same week, the teachers at his preschool told us that while our son was very sweet and well behaved, and extremely smart with academics, he was always playing by himself and not engaging enough in communication with the teachers, and had a significant language delay. They didn't know what his problem was, but they urged us to seek an evaluation. We asked the pediatrician for an urgent referral, and meanwhile started researching feverishly on the internet. On the more informational websites, we could confirm that my son's autism should have been obvious all along, with the narrow interests, lining up of toys, echolalia and scripted language, hyperactivity, perseverative and repetitive behaviors, etc. Even his uncanny ability to read letters and numbers at 2 years old was very common in autistic kids! We didn't need to wait to hear the official diagnosis a month later; we knew right then he had autism.

Unfortunately, the more comprehensive lists of symptoms can only be found on websites that are read mostly by people who already suspect their child is autistic. Those symptoms are not common knowledge and very rarely the TV shows and magazines will talk much about the most subtle signs. The stereotypical image of autism IS the severe end of the spectrum, and very few people in the world know what moderate to high functioning autism looks like. And that's precisely the reason why so many children are falling through the cracks and not receiving the early intervention that they need in order to develop to their full potential. If I'd known more about all symptoms of autism, I'd have been able to diagnose my son as early as 12 or 18 months old! Instead, by the time we found out, he was almost 3; by the time bureacracy allowed, he only started receiving special education for autism at 3 years, 2 months of age.

The fact that some kids are not obviously autistic to their families and peers will also make these children vulnerable to abuse. Parents will think they are defiant or inconsiderate; peers will call them dumb or crazy. So, as we're almost at the end of Autism Awareness month, I hope that more and more people are learning that autism is a spectrum where even the most "high functioning" individuals will have to face extreme difficulties and challenges, and will need a lot of support and understanding. I hope that more educators and therapists will be able to spot the early signs of autism so our children will have more time to "catch up" on their development.