Autism is a dual condition in that it affects not only those born with it, but also those who are in close contact with it. Siblings can feel left out because of the extra attention that must be afforded their brothers or sisters, parents can feel that they are not doing the right thing either, by not paying enough attention to their neuro typical* children in the effort to bring out the potential of autistic offspring, or even by their autistic children for whom it seems you have to throw away the child rearing manual as everything appears to be turned on its head.

Sometimes parents can also feel like they are not doing the right thing by each other. I watched a program about two parents that had not one but two autistic boys and the effort required had virtually stopped them from having thoughts and desires about each other. It wasn’t that they didn’t love each other anymore, rather they were worn out by it all. In the mother’s case she also felt that she was hopeless at raising her boys.

It seemed autism was insidious rust eating her from the inside out.

Now autism is a benign word that means neither good nor bad, it simply describes a medical condition with no rhyme or reason to it that strikes randomly. To think it is bad or give it any other negative connotation, colours your thinking about the peoples affected with and by it. Autism is what it is, no more, no less. Mom-nos wrote a moving post about how it felt when someone carelessly used the word autism as if it meant idiot. Judging by the comments she received, all parents of autistic children have had similar experiences, I know we have - sometimes it’s not even a word, just a look can convey disapproval.

There are times we have all witnessed the badly misbehaving child and wondered why the parents seemingly have no control. If the child was neuro typical it may be a fair question, but what if autism was involved? What is acceptable behaviour for such a child reacting to painful stimuli, like noise for instance, or some other stimulation over which they are powerless to control? What is difficult for the outsider to grasp and also the parents of that child, often the stimuli is invisible and can suddenly unleash a meltdown from nowhere that makes sense to only one person. Imagine what it would be like for you if the very act of hearing was painful.

But the point is, if you saw an out-of-control child do you automatically label the parent, even subconsciously, as poor? What would you think if you witnessed my Friday afternoons when I pick up M from school and every week without fail, she would tell me to go away, that she hated me and only mummy could pick her up, with all the passion she could muster, crying real tears? Once it took me half an hour to actually drive out of the school grounds with her. Does that make me a bad parent? Have I somehow mistreated my daughter so badly that she doesn't want to be with me? You might just think that. If you were I, you might think that too. But I don’t. What M is railing against is the change in her routine, not me, it's just that as the embodiment of change her tantrum is directed at me. But it's all too easy as a parent to believe that somehow it's your fault that your own child is behaving like that and as days become years it can become part of your core belief system, rust eating away at you.

For three years I endured M's Friday afternoon anger. I understood what was going on and that M was not yet mature enough to deal with changes that weren't to her liking. But slowly, painstakingly, the wheel turned. Last Friday I was walking towards the school gate when M spotted me and bounded towards me and instantly wrapped her arms around me in a giant hug. I have never loved her more than I did at that moment, kissing her on the head and returning her hug. But what if the rust had eaten so much of me away that I was unable to respond? How would that affect my daughter and how would it have looked to the casual observer seeing a cold and distant father, not knowing the previous history?

One of the best things I ever did was a better parenting course. My wife D did the course first and I would have to admit that I was skeptical when she suggested that I do the course as well. After all I had raised three other children, parenting didn't seem that difficult that I would need a lesson and how could it relate to our autistic daughter? Don't autistic children need special parenting that can't really be taught by a stranger. A sort of learn-on-the-job deal. Earlier I mentioned throwing away the child rearing manual as if it only applies to neuro typical children. What is that saying saying about those with autism, that they are somehow different in a way that they don't respond like other children? Nothing could be further from the truth. In most cases, children with autism respond exactly like all other children to parenting, it's just that it takes longer to get them around. Sure my daughter is different, but not in any way that doesn't respond to parenting.

Autism will affect M for her whole life in ways that I probably won't fully comprehend, but autism hasn't affected the way I see her as a normal, loving child of whom I'm quite proud. Yesterday she was quietly drawing pictures and I was gazing at her. She looked up and I smiled at her, the return smile was everything that I needed.

*Neuro typical is a term to describe those without autism or other neurological disorder.

Edited to add: If you want further information about the Parent Program that I attended, email me and I will give details of new courses as they begin.

Labels: autism, parenting