A good book I’ve been reading lately is ‘The Autism Answerbook’, by one William Stillman. It’s meant for parents of those with autism, like so many on the market at the moment. But Stillman himself has Aspergers, and therefore takes a different approach to the advice he gives parents. While I don’t agree with all that he says (eg on the use of ‘person-first’ language) and he probably doesn’t go far enough in some other respects, I nonetheless think he makes some excellent points.
For instance, he tells them that autism is a “unique and different way of being”, a “natural variation of the human experience”; and urges parents to value and support the child’s ‘passions’ (which others call ‘obsessions’), rather than trying to suppress them. He tells parents that the real experts on autism are the adults on the spectrum, and to parents who might feel devastated by their child’s diagnosis, he points out that this may be due to popular images of autism or news stories that put a ‘tragic’ spin on autism, or unhelpful, gloomy pictures of their child’s future painted by those who gave them the diagnosis.
But I feel the best thing he does is to take a stance focussing on three themes –
1. ‘Presumption of intellect’. This means that even though an autistic child may not speak, or speak clearly, seems disinterested/detached from the people around them, and doesn’t respond to standard IQ tests, nonetheless you take a stance that they are aware and intelligent, comprehending in their own way what is happening around them. It means treating them with respect, eg by not talking about them in front of them, as if they are deaf or intellectually handicapped, especially if it’s to moan about their ‘deficits’ or the stress they are causing in your life. It also means parents ‘partner’ with the child in every aspect of their life, to allow them (obviously varying degrees of) input and control over decisions made about them. A very valid point, I think.
2. Prevention instead of intervention. This means learning to plan ahead for anything that might cause difficulty for the autistic child, rather than wait till afterwards and (try to) handle the sensory overloads, meltdowns, social disasters, etc. This seems like common sense to me – stopping things before they start is a whole lot easier than cleaning up the mess afterwards. But at least some parents don’t give it enough thought – they seem to just want or expect the kid to ‘behave normally’, even when that patently isn’t possible.
3. Fostering self-advocacy. While the child is young, they will need their parents to advocate for them, it’s true. But as they grow and mature, it’s possible to teach autistic children some degree of self-advocacy, ie learning to handle and communicate their own needs. Even for those deemed ‘low-functioning’, I feel this is an important point. Parents of ‘normal’ children (well the good ones anyway) do their best to foster independence, self-care and self-expression in their children, even if the kids are intellectually or physically handicapped. Why should our autistic children deserve any less?
I’d recommend this book first of all, to any parent with a child newly diagnosed with an Autistic Spectrum Disorder. It’s a great starting point, and a whole heap better than the ‘doom and gloom’ brigade, or books which only emphasize the child’s ‘deficits’ and ‘lacks’.