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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'm intrigued whether this is American or British. My little knowledge of American charities very much gives the impression of them being the solution to the "problem". Autism speaks is well known (although they've back tracked on it now) to look for cures and solutions. But I have no first hand experience being British.

    I don't know many in UK if I'm honest apart from NAS. I know there are local charities but I've never had much to do with them. I think the NAS does tend to put autistic people more at the forefront and does try to debunk the stigma. They do work to try and make schools more inclusive and give guidance to employers on how to make adjustments. And I'm not aware of them using language like impairments.

  • in reply to Expecto_Patronum

    I also think a lot of local charities are set up for those with higher support needs. Those of who are deemed "high functioning" are often forgotten.

Reply Children
  • in reply to Expecto_Patronum

    I agree EP, I think there are many of us who struggle, we struggle with things like transport and are less able to cope when it goes wrong. We may have a bunch of foibles and phobias, one of the things that comes up again and again are resonable adjustments, is it reasonable for me to ask for a different uniform or fabric because the one I'm provided with makes me feel as though I'm having multiple electric shocks? How do we cope with sitting next to someone who's perfume is overwhelming and gives us a sick headache, or just the lung cloying scent of febreeze? How many of us suffer socially because we find it difficult to talk to strangers, we have problems getting to ND social groups, we get overwhelmed by the noise of so many people talking and music in the background?

    When I was first diagnosed, I was told of a social group meeting in a bar in Bangor, I didn't go, for many reasons, but one was that there was nowhere safe to park my car, the nearest parking place was a supermarket carpark. I thought to myself, 'So I'm expected to do a 50 mile round trip, to go and sit in a bar with nothing I can eat, fizzy pop or water to drink, talk to people I don't know and who are probably a lot younger than me and walk through a dark car park and down a dark alley?' What surprised me was that people were surprised, just because I'm ND dosen't mean that I should be immune to basic personal safety.

    I was asked by a charity to donate money to help ND people, I asked them if they could offer me any help, I got a firm no, they don't deal with people of my age, only young people, I don't think they even believed I was ND. Us older people seen to be ignored and not believed and it's thought even by "helping agencies" that we're lying, with so much of this stuff, it sounds horribly reminiscent of how sexual abuse and rape have been treated, the way that black and brown people are treated and the LGBQITA communities have been treated historically. If we don't exist even to those who are designed to help us be heard, then who knows what goes on behind closed doors? Who will listen and take notice of us?

  • in reply to Iain

    This view interests me because actually, I'd say a lot of help already exists for those with the highest support needs. They won't live alone. Social services provide a lot of services like direct payments. They can claim pip. Many of us who visit here are those that lack support and don't know where else to turn. Yes we may be capable to a degree but what is very evident in frequenting this sight is the effect on mental health for many of us here is enormous. I also wouldn't say that those with high support needs are a majority. There are just as many, if not more autistic people with lower support needs, we are just massively over looked.

  • in reply to Expecto_Patronum
    Expecto_Patronum said:
    I also think a lot of local charities are set up for those with higher support needs. Those of who are deemed "high functioning" are often forgotten.

    This will be by design.

    They are working with those who most need the help as a priority and whatever resource they have left over (or have allocated) to help us will be secondary.

    The one thing this community has shown me is that many here are capable of helping themselves with a bit of advice, support and encouragement.

    There will always be outlying or marginal cases but I think the strategy of NAS will be to help the most needy and try to help as many others as is practical. They can't be successful every time.

    I'm sure when they were allocating the resources they will have looked at the distrbution curves of those with high support needs and positioned themselves to help the majority. This approach means the most are helped but there will inevitably be stragglers at the ends of the curve who are left out.

    As Spock would have said, "the needs of the many outweigh the needs of the few".