The month of April is upon us and we are commemorating Autism Awareness month. It pains me to the core that for a condition that affects so many people, so few people are aware of it.
I've stopped counting the number of times I've told people that my son was autistic and they asked, "What is that?" After telling them what it is, they go on to say, "Don't worry, he'll be fine. It will go away." That's the kind of ignorance I have to face more often than not.
One of the difficult things about autism is the fact that it's a condition that's not visible to the naked eye. A child that is autistic can look perfectly normal, and when he misbehaves, people just think he's a spoilt brat.
When people invite me to their homes, I'm always anxious about accepting the invitation if it means I have to take my son with. This is because he knows no boundaries. If he's hungry, he'll simply march into the kitchen and ask, "Whose sausage rolls are these? I'm hungry!" And as I desperately look for the nearest sandpit to go and hide in, the gracious hostess will pretend my son is really cute for being forthright. I hate to think what some people say about my parenting skills behind my back. But over the years I've learned to develop a skin the thickness of five rhinos to cushion myself from unwarranted opinion.
I'm up to the ears in unwanted advice on how to deal with my son's behavioural issues. I don't go around dishing advice to people on how to raise their children, so I don't understand why I should be receiving advice I don't ask for.
When my son was diagnosed at the age of four, I thought I would never smile again. I felt like I was walking in a dark, dense and scary forest all alone. I met one woman at Dischem Cresta who was with her teenage son. We chatted a little and she told me her son was autistic. I also told her mine had just been diagnosed before bursting into tears. She gave me a hug and told me one day I'd feel better, even though for many years to come I'd still cry sometimes. I didn't believe her.
Four years down the line, I do feel better. I will continue to have moments of sadness over the fact that my son has this condition, but I'm not weepy all the time anymore. I try to focus on and rejoice in the things that he can do, rather than agonise over those he can't. Because of him, I have become a very patient individual. If I had continued to be the person I was before, I would have popped a few veins because progress comes slowly, in his time, on his terms. I remember spending almost a year teaching him colours and failing to get through to him. But one day he just started pointing out the colours of cars driving down our road.
I have to be patient when he won't stop asking questions about what's happening on TV or around us. That's how he learns and acquires vocabulary.
It's alright for people to commiserate with families of children with autism. It really is a hard road to travel for most families. There are, however, things I wish people wouldn't say when they talk to parents of children with autism. Victor never forgets the names of people he has met. Sometimes we have to ask him for people's names after we've forgotten them, and he always gets them right. When he greets people by their names, some immediately have this funny expression on their faces and funny tones in their voices and say, "wow, he remembered me!" Who ever said he's incapable of remembering anything? Then there are those that think all autistic children will be able to compose music like Mozart. Others just look at him and declare he's going to be a mathematician because they watched the movie Mercury Rising, and are sure he's going to be like that little boy who deciphered difficult puzzles. But autistic people are about as identical in their behavioural patterns as chalk and cheese. If you see one autistic person, you definitely haven't seen them all.
I've also had a couple of weirdoes expecting him to line everything up as soon as they hear Victor is autistic. While obsessively lining things up is a tell-tell sign of autism in some autistic children, it's wrong to assume every child with that condition will do that.
I must have missed the memo that gave people the authority to psycho-analyse other people's children and talk about them in third person in their presence, something they wouldn't do to their own kids.
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| Lining toys up is one of the symptoms of autism, but not every autistic child does that |
And the line, ”God gives special kids to special parents, he gave you an autistic son because he knew you would be able to take care of him“ really doesn't do it for me. Would it be right to walk to a cancer or diabetes patient and say to them, ”Oh, rejoice and be glad, God gives special diseases to special people"? Of course it's wrong on so many levels. Why then should this line be shoved down parents of autistic children?
We didn't sign up for children with autism. Life is difficult enough without opinionated people bombarding us with their judgements and diagnoses on a condition they barely understand. It's OK not to be a Smart Alec about everything. Sometimes all one has to do is ask questions, or listen carefully in order to understand.
