This year at Autscape autistic activist Martijn Decker gave a presentation entitled “Pick a side: the dilemma of being an autistic parent” which examined the unfortunate fact that sometimes (often?) parents of autistic children are considered in opposition to autistic adults.
Earlier in the year many people told me to listen to iPM on Radio 4 saying it was moving and parents are giving “the other side” of the autism story.
I read the article on the BBC website and started to listen to the iPM programme. What was being discussed seemed to me to be a “straw man” type argument, where what was being argued against had never seriously been proposed in the first place.
So the parents were saying they felt oppressed by a relentlessly positive narrative about autism which did not fit their experience. However I think that this solely positive narrative is a reaction to the previous overwhelmingly negative narrative about autism (still prevalent in some circles a website calling itself Autism Independent UK defines autism as “the most severe of the developmental disabilities”). It is a classic pendulum swing situation and we need to recognise this and realise that the truth is somewhere between these extremes – autism is not one thing, nor does it go along a line from high to low functioning. To show the multidimensionality of autism I developed a constellation model (crafted by an autistic woodworker) to demonstrate visually how autistic peole are outliers in all directions.
It is quite frequent that parents have more than one autistic child. I would have thought this makes it clear this autism is genetic, so at least one of the parents is likely to be autistic. However myths and stigma about autism and/an autistic trait of tunnel vision often make such parents unable to consider they might also be autistic, with the result they propose that autism is totally a negative disorder, which has affected their children.
Autism is a natural part of human diversity which can confer both strengths and challenges. It is an atypicality that can be a gift or a disability. We should no more deny the difficult experience of parents who have autistic children with challenging behaviour than diregard the joy that autistic artists and scientists have given us.