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Comment on: “Why do autism ‘experts’ say such awful things?”

Shannon des Roches Rosa published a well-referenced and desperately sad blog this week about the scaremongering and self-aggrandising speech of all too many US “autism experts” (which then extends to the US media, as it seeks them out when planning a storyline related to autism.)
She asks why the harmful rhetoric continues. I have argued before that these false images have a damaging effect on the quality of life, and sometimes the life chances, of autistic people. The reasons for harmful rhetoric appear to quite often be about promotion of organisational profiles and fund-raising. Sadly, in the US this applies not just to those who may be selling interventions, but also to mainstream charities and university departments. And I suspect that a fair amount of the blame can be laid at the feet of marketing and PR consultants, who believe that there are so many messages out there competing for our attention that we must make ours extreme and memorable–even if that results in harm to precisely those whom the donations or research is supposed to help.
In the UK, greater involvement of adults with autism at the core of the National Autistic Society has resulted in organisational change, including visible and lasting change in both their messages and their mission. I would suggest that, while imperfect, the NAS holds up a model of how to talk about autism without creating a damaging discourse that demonises people with autism and encourages their parents to take desperate (and ultimately useless) measures.
And the way to change the message is clear: stop talking about autistic people, start talking with them. Start listening. And then start acting together.

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