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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 thik this is a wider problem with charities in general, they can appear posessive of what, in this case, autism is and is not and how to deal with and treat ND as a whole.

    To be honest I'm not entirely sure what work NAS does and I'm not aware of any other charities dealing with ND. I would cetainly like to see NAS leading from the front when anything to do with ND is in the media, I've seen numerous sections on autism on programs like Newsnight, but never have I seen a "talking head" from NAS.

    One of the things I've noticed about groups that deal with autism is that they concentrate on how to claim benefits almost to the exclusion of anything else, it's like they don't know what to do if you get the right benefits. I don't know if this is a common experience, or just mine, but the local group for North Wales seems a total waste of time and money, the "help" they gave me was a list of organisations to contact who maybe able to help me, a bit like a human google. They couldn't cope with my poor digital skills and after me telling a woman for about 20 mins of my difficulties she offered me a zoom type induction meeting, when I'd just told her I don't have a smart phone or anything else like that. 

    Another thing I'd like to see more about is how age and aging effects ND's, there must be a whole cohort of us coming up who will need geriatric services in the next decade or so and yet charities such as AGE UK and it's offshoots have no idea about ND and I fear that my generation will be the pioneer's who fall through the gaps in provision and understanding until theres some sort of scandal. My generation has already been unheard and unseen because ND wasn't recognised when we were growing up and it feels like we're being ignored again. I'd like to see NAS and other's actively engaging with other charities who support older people and agitating for better recognition of what is going to be a growing problem.

Reply

  • I thik this is a wider problem with charities in general, they can appear posessive of what, in this case, autism is and is not and how to deal with and treat ND as a whole.

    To be honest I'm not entirely sure what work NAS does and I'm not aware of any other charities dealing with ND. I would cetainly like to see NAS leading from the front when anything to do with ND is in the media, I've seen numerous sections on autism on programs like Newsnight, but never have I seen a "talking head" from NAS.

    One of the things I've noticed about groups that deal with autism is that they concentrate on how to claim benefits almost to the exclusion of anything else, it's like they don't know what to do if you get the right benefits. I don't know if this is a common experience, or just mine, but the local group for North Wales seems a total waste of time and money, the "help" they gave me was a list of organisations to contact who maybe able to help me, a bit like a human google. They couldn't cope with my poor digital skills and after me telling a woman for about 20 mins of my difficulties she offered me a zoom type induction meeting, when I'd just told her I don't have a smart phone or anything else like that. 

    Another thing I'd like to see more about is how age and aging effects ND's, there must be a whole cohort of us coming up who will need geriatric services in the next decade or so and yet charities such as AGE UK and it's offshoots have no idea about ND and I fear that my generation will be the pioneer's who fall through the gaps in provision and understanding until theres some sort of scandal. My generation has already been unheard and unseen because ND wasn't recognised when we were growing up and it feels like we're being ignored again. I'd like to see NAS and other's actively engaging with other charities who support older people and agitating for better recognition of what is going to be a growing problem.

Children
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