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Research that improves lives

longman

I've done this before, but it needs a periodic shout, how much research on autism is about improving lives? How much research is about making day to day living with autism better?

There is money going into research on autism, including central government funding. But how much of it is spent on research addressing issues of daily living for people on the spectrum?

The trouble is that most research money goes on high profile research, the stuff that might get a Nobel prize. Strangely, research on improving lives seldom figures in high profile research. The aim is to make a breakthrough - advance understanding of the causes autism, find a cure, or a means of prevention.

Secondly a lot of research money goes to sustaining research centres with big overheads - a multi-million pound scanner, or a large research team with international profile. Such research centres are out of reach of most of the newer universities or out-in-the-sticks universities. Most research funding goes to the big players.

Thirdly high profile research goes in the top academic journals. I'm afraid a project that helps a few adults cope better wont make more than a regional newsletter, or half a page in a popular magazine.

Consequently the only funding doing the rounds that will help with living with autism is a few thousand pounds here and there for a training aid for health professionals (how many of these have we seen?) that probably wont get written up as there isn't enough money even for electronic publication, and therefore adds nothing to understanding of autism needs.

99% of research money may benefit people with autism 10 or 20 years from now, if we are lucky.

That's why we still suffer from ill-informed GPs who wont do referrals for diagnosis, or care centres that are found to be treating people with autism very badly, and public services that don't recognise autism as a disability. There's no research cudos in improving lives.

  • D'accord, Longman. Nobody can see inside us and 'get' what's going on in there, and it seems that no-one's trying to. It is indeed our daily struggles that are so difficult to put across. I always think of this in terms of my functionality (that's why I have such a hatred of the term 'high function) because of the fluctuations I can go through, even in a single hour if the conditions are right.

    (Hi Mid, I guess you've got a definition of this phrase because you use it. What do you think it means?)

    I think that we've firmly established that there's little or no interest in our daily adult AS lives, and I'm convinced that it's because there are those of us who, through long exposure, can self-manage, according to NT criteria, and then get the highly dubious label 'high function' so we must be 'OK'.

    I still think that unless we establish a group identity, and 'speak' with some unity, we're just not going to get listened to and must wait for crumbs off the table. Now if only some researcher would start with a loaf...

  • I would go further by suggesting NAS publicises research that looks at day to day living with autism - depression, suicide, fear of busy and noisy environments, people not leaving their houses (or even their bedrooms), people having meltdowns and so on

    It could be done if NAS made it known they would publicise such research, people could contact NAS to tell them about it. There could be a page on the website dedicated to flagging up useful research on everyday life, and interesting examples could feature in Your Autism Magazine.

    It doesn't matter how small these research initiatives might be. The point is thery have started, are in place. Research often grows from seeds like this. Only when someone takes the first step do others follow.

    I do find it annoying that NAS often advertises big research projects with little obvious relevance to people on the spectrum. Perhaps these big research centres make a donation to NAS for the publicity. There is surely much more honour in NAS giving initiatives at the bottom rung a helping hand.

    I have been greatly concerned by the kind iof research NAS choses to flag. One about a year ago in Your Autism Magazine, that got two or three pages with colour pictures, showed that people with autism find it harder to visualise a memorable landscape.

    But how is that helping with autism? It is just a game with some research centres.

  • Very pleased to hear that you are doing research on autism and suicide. This really is a very important research area, almost entirely neglected by health professionals.

    Even though you are struggling to do this on a small budget, you are an example to others, and actual research initiatives, however small, through being up and running, do increase visibility of a research issue.

    I did pursue this with Government Departments last year, pointing out the high level of thoughts of suicide amongst people on the spectrum, and the high occurrence of suicides amongst some groups, notably people at the more manageable end. This concerns people finding it hard to cope when their behaviours are hard to identify, and therefore they endure recrimination because their difficulties don't merit a label, and therefore adequate accommodation.

    The answer I got was it was up to the research councils to decide how central government research funds for autism were being spent.

    I did approach several key funding councils and all I got back was being told to look at the wonderful research on autism being done by a certain unit in Cambridge (oops Mods will probably delete Cambridge! - it might imply something).

    But until someone makes a fuss there will be no change. At least you are making the commendable and admirable gesture of seeding a new but very important research area.

    Every good fortune in your efforts. Perhaps NAS could flag up that you are doing it.

  • You're correct Longman.  I am doing research into suicide prevention in working age adults with autism, as there is such a need.  My funding is coming from family and friends who have seen me coping with suicidal ideation from time to time and they want to support me.  I wonder if it will ever make a big publication.  It isn't there yet, in that I've just started my PhD.  The university put me down as a part time student, instead of fulltime, so as to reduce the costs for me each year.  But my student badge says I'll finish in 2022 - years away.

    I'm aiming at getting my work out there though.  Perhpas a small talk at an NAS conference - well I can think for the future.  

    At least I've got a diagnosis of high functioning autism, I didn't speak until I was 4 1/2 years old, but my parents said I made up for it since.  I'm now in my 50s and it is too late for me to make an impact on others' lives, but I hope not.

    Thank you for your post Longman, I always read your posts with interest.

    Margaret