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New research on autism charities

Wordsmith

I just came across some interesting / disturbing research about how major autism charities regard autistic people. The research paper itself is on PLOS One and you can find a more journalistic discussion of it on The Conversation.

The researchers analysed the annual reports and accounts of 11 large autism charities, and the abstract of their paper reads in part:

Representation within these reports emphasises adversities associated with Autism, and the language chosen to portray Autistic people largely describes Autism as an impairment. In contrast, charities represent themselves as the solution to the ‘problem’ of Autistic people, and thus deserving of increased resources and funding. Government is largely depicted as ineffective and deficient. We argue that these Autism charities are thereby upholding – rather than challenging – the disabling barriers in society experienced by Autistic people. For Autistic charities to better represent Autistic people and improve wider societal understanding of Autism, there is a need for more positive portrayals that challenge the ‘charity saviour’ trope in charity communications.

I’d be interested to know what you think about this.

Parents

  • I can’t speak for other charities but it does seem that the NAS prioritises children and adults with high support needs and their families. This is an observation, not a criticism, but it got me thinking about ASD. The Spectrum is so large and it is as if each one of us is made up of multiple strands of a huge carpet, but we all share only some strands that are the same, yet they are of different lengths. So, how can a charity such as the NAS support us all, given the limited financial budget and expertise?

    This brings me to the medical definition of autism as a deficit, ASD. (I haven’t yet read the relevant bit in the article) The medical people can’t classify us as autistic without the deficit. We can discuss and argue over what ‘condition’ we have or maintain that we ‘Are Autistic’, yet we can’t be slotted into any other classification other than as a deficit, unless we/society decides a ‘Social Condition’ register or something like that were to be  introduced. 

    I am not sure what to think about the article but I have only scanned it—I need to read it properly and I haven’t time at the moment to research all the charities they mention.The journal publisher is based in California and authors are British based.

    This is what the US publisher has to say about itself:

Reply

  • I can’t speak for other charities but it does seem that the NAS prioritises children and adults with high support needs and their families. This is an observation, not a criticism, but it got me thinking about ASD. The Spectrum is so large and it is as if each one of us is made up of multiple strands of a huge carpet, but we all share only some strands that are the same, yet they are of different lengths. So, how can a charity such as the NAS support us all, given the limited financial budget and expertise?

    This brings me to the medical definition of autism as a deficit, ASD. (I haven’t yet read the relevant bit in the article) The medical people can’t classify us as autistic without the deficit. We can discuss and argue over what ‘condition’ we have or maintain that we ‘Are Autistic’, yet we can’t be slotted into any other classification other than as a deficit, unless we/society decides a ‘Social Condition’ register or something like that were to be  introduced. 

    I am not sure what to think about the article but I have only scanned it—I need to read it properly and I haven’t time at the moment to research all the charities they mention.The journal publisher is based in California and authors are British based.

    This is what the US publisher has to say about itself:

Children
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