A good learner need never be an expert – all that there is to learn, on any subject, always outweighs the sum of that which we have learned so far. That said, autism is probably my specialist subject (coming a hair’s breadth close second to making curry) and whenever I meet people with an interest I am happy to share my experience and exchange information and ideas.
I met and began chatting to a mother with a pre-school son the other day, and through the course of our conversation I established that this young man had recently been diagnosed with autism. The diagnosis was so recent that the Mum I was chatting to had not fully absorbed, and did not fully trust the expert’s opinion. Her words were an armour of defence; ‘he doesn’t say many words but he knows exactly what I mean when I’m speaking’ – ‘I know lots of four year olds who don’t like looking at story books’ – ‘if he wants to watch the same clip of the same show over and over on his ipad, nobody’s going to tell him he can’t’.
I nodded and smiled at these sentiments; I remember experiencing similar thoughts during the time that my children were being diagnosed. I would hop back and forth, back and forth. One day I’d be all for accepting autism (or asperger’s, or Daisy’s rare condition, Kabuki Syndrome), with a sureness that I and the world at large could adapt to any differences that the children might have. The next I would take up a defensive stance, how dare these people tell me that my child was abnormal? He had five fingers on each hand (or should that be four fingers and a thumb – he’s not a monster), five toes on each foot, the correct number of limbs, he walked, he ate mush, drank milk, cried and laughed, what did they want from him, blood?? And then I would go back to observing subtleties, the way that he would spin a toy car’s wheel obsessively, repeatedly, for very long periods of time, with little regard for the toy as a whole. The way that she ran around in circles, seeming oblivious to the other people in the room, happily shouting out little snippets of conversation from her internal, imagined world. The way that her bright blue, almond shaped eyes didn’t seem to fully focus on my face as I sang her a lullabye.
It being a school day, Lenny wasn’t with me on this occasion, as I chatted to the lady who pushed her son on the toddler’s swing in our local park. I told her that my son had received his diagnosis at a slightly younger age than hers. Lenny was almost three when it was officially acknowledged that he was autistic.
‘He must have been worse than…(let’s call him Oliver) then, if he got diagnosed sooner. How bad is he?’
‘I wouldn’t say worse, and he was never bad,’ I replied, ‘but he was very different from (let’s call him Oliver).’
‘So was he better than (let’s call him Oliver)?’ she asked.
I knew what she meant. Was my son closer to, or further away from the norm than hers? And if he was further away, did he grow up to be nearer? And if he was nearer to the norm, did he continue along that socially acceptable path, or did his development go askew, meandering between the ‘acceptable’ and ‘something to be worried about’ arcs of the much studied childhood graphs. If to be outside the norm is ‘bad’ and to reside within that terrifyingly narrow band ‘good’, and if there can be ‘bad’ autism or ‘really bad autism’ as opposed to having a child with a charming ‘essence of autism’ then what does this mean for our children?
I liked this lady a lot, and I fully empathised with her mixed feelings about the diagnosis that her son had just been given. I’ve heard many professionals use similar language over the years, though, and I feel less forgiving about that. Regarding my son’s toileting habits, in a development meeting, ‘he used to be really bad, but slowly he is getting better.’ ‘He’s never been ‘really bad’,’ I countered, meekly, ‘Just that he didn’t understand the necessity of toilets. He’s learning that now, which is good for us. Probably all the same to him, apart from the rewards he gets.’ A concilliatory smile from me (are you with me? are you on my side? are you on my son’s side? do you accept that ‘autistic’ and ‘bad’ are not interchangable adjectives? Are we all enjoying the meeting? Should I get my coat???)
In autism parent support groups (a meeting of minds that I now avoid like the plague) I have heard adults competing for most put-upon parent award. ‘He’s a nightmare.’ ‘His behaviour is horrendous.’ ‘Worse than Rainman!’ (Was Rainman ‘bad?’ I seem to remember Raymond Babbit being very polite, very well turned out, and exceptionally good at poker).
‘Bad’ means evil. If a person is ‘bad’ they have evil intent, they are wrong-doers, criminals with a disregard for all that we perceive as being ‘good’. If the weather is ‘bad’ it doesn’t suit us, we cannot wait for it to go away, and be replaced by something better. The words that we use with regard to our children are important, for many reasons, but chiefly because they are often by our side, listening in, building a picture of what it means to be themselves from the casual observations that we make about them.
My children’s behaviours are often unusual, chaotic, messy, loud, but I can honestly say that there is nothing ‘bad’ about them. Regarding my son’s autism, if I had to define it at all, I would use the word ‘classic’ like a well-tailored suit, the original and the best 🙂