Having spent so much time with Duncan this week has given me time and space to think about him and autism and expectations. He was a very restful companion in many ways. There wasn't a need to chat incessantly. He did talk a lot, but not all the time. Often I missed what he was saying as he spoke too quietly in the noisy surroundings and he didn't want to repeat himself. His observations were probably not aimed at me anyway, he was likely just musing to himself. When we relaxed in our room, he pottered about, playing with his toys or splashing and telling himself complicated tales in the bath or he snuggled beside me and watched the TV. But it was very quiet and peaceful.
In the parks, he sat in his buggy with his long legs folded up and his stuffed Donald Duck clasped in his arms. He had his cap pulled low over his face and on the second day, despite the heat, wanted to wear his green hooded top. He wore his ear defenders about 1/3 of the time.
I know that I have been described as lazy, a lunatic even, and as having "given up" on Duncan, or for thinking I have "missed my chance" to apply some sort of early intervention that would supposedly have minimised his autistic difficulties. That is why, it has been said of myself and others like me, we speak out against the quack "cures" foisted on some autistic children and the false blaming of vaccines and toxins for having caused their condition.
But that's nonsense. Duncan is who he is. He is autistic and there is nothing I can do to change that. I can parent him and teach him, I can help him like his siblings to learn more as he gets older, to develop more knowledge and skills, to change from a helpless infant into a man as competent, self-reliant, decent and as capable of continued learning as he can be. There was no missed narrow window of opportunity. He will learn best when he is comfortable and feels safe and appreciated. I do not have to make him suffer by cutting off the place of safety his buggy has been.
I thought about the autism therapies marketed, the Floortime, RDI, ABA and Son Rise. I thought about what I have read about each of these. I have not followed any of these autism therapy programmes. Well, I did use PECs with Duncan, but only for a short time and not exactly as instructed in the manual. The cards were very useful for a time though.
But for the others, I bought or borrowed books about them and though in a few of these books, I picked up a couple of useful ideas to try, none of them appealed to me as something to do wholesale with Duncan. None of them have any good evidence of their effectiveness beyond parent testimonials. Though ABA is less bad than the rest, it's main claims are still based on a badly run study over 30 years old the results of which have not since been replicated.
I know many people have found some of these ideas have helped them and their children. That's good. But I dislike the marketing of each of these therapies. I do not think that it is necessary to follow the trademarked and expensive therapy of some guru to be able to teach an autistic child. As Duncan enjoyed the parks in his own way, I though about what I read in the RDI book for example, that you're supposed to make every moment a time for developing those relationships, for making the child interact with you enough to overcome those pesky autistic deficits and change their neurology. The thought of pushing myself into Duncan's inner world at every opportunity and distracting him from all his own thoughts and observations with my own desire to make him talk and ENGAGAE is abhorrent to me.
I thought about how much of these therapies are based on the idea that autism is so terrible, that autistic people are lesser people. I don't agree with that. I witnessed my son enjoy perfect happiness. He was doing what he wanted to do, we negotiated so that my needs were also met. We both had fun. I may be making a circular argument here for which I apologise. But it comes down to my acceptance of him and his autistic way of being. It might be harder in some ways to deal with the aspects of life that present fewer difficulties to the parents of non-autistic 8/9 year olds, but that's how it is and in some ways, I have to admit, it is actually easier. But then, no-one chooses to become a parent because it's easy.