Research - do we benefit?

The NAS accounts for 2012/3 are linked to here:

www.autism.org.uk/.../search results.aspx

I am not great at reading balance sheets but to me its looks as if the NAS spends about 172K per year on funding research

I have heard from an acquaintance who is connected to the NAS campaigns department that they tend to cherry pick the things they think they can 'win' at.  I have emailed them in January and April this year regarding the growing problem of parents of autistic children suffering false accusations by state services and they didn't even respond.  There was a petition about it to Mark Lever on Change.org which gained 1,063 signatures too.

I've been trying to Google where NAS funding comes from but can't find anything.  I wonder whether the Government contributes funding and that the NAS is therefore very careful about which boats it rocks.

Wow, amazing that the article appeared on the same day as my post. I hadn't seen it, I'm just so down with the zeitgeist!

I have emailed my MP about this. We could also start a petition on change.org. Are NAS proactive with their campaigns? I'd have thought this issue was an obvious target for one.

Well spotted....The Conversation is not on my reading list. And thanks for the other links.

Thing is it is all talk, posturing. They've done a survey - been told that people feel they are giving information and not getting anything back, but they aren't saying what they are going to do about it. If they recognise the need, and the importance of consultation, there ought already to be an initial event in the making.

CRAE (The Centre for Research into Autism and Education) is the organisation she represents http://crae.ioe.ac.uk but it is not the right platform for getting anything done.

Some nice projects though - crae.ioe.ac.uk/.../understanding-the-lives-of-young-people-with-sen looks like a good idea. crae.ioe.ac.uk/.../a-future-made-together directed at real needs might get some answers. But they're small project funded - nowhere near the big battalions like Medical Research Council's £1.5m a year.

We need to collar MPs and get them to ask questions - NAS Campaigns could set something up for us......

Longer article here: http://ioelondonblog.wordpress.com/

And here is the project in question: http://crae.ioe.ac.uk/post/64979963005/a-future-made-together

longman said:

I don't see anything there about living with autism.

How funny Longman, someone else has flagged up the very same thing!

http://theconversation.com/autism-research-isnt-helping-people-live-with-daily-reality-25773

It's very good that the message is getting out there.

I think they can find a way around any boycott. A lot of research subjects are receiving treatment and are asked to voluntary submit to research - like they really have much choice. We would have to be pretty widely coordinated to have enough impact.

I looked at Autistica's website http://www.autistica.org.uk  They fund genetic, behavioural and neurological research.

Their research is directed at understanding causes, improving diagnosis, early intervention strategies, and databases. I don't see anything there about living with autism.

The causal research is the Autism Genome Project and how genes affect brain development. The diagnisis project studies genetic characteristic of siblings and language in toddlers. The intervention strategies include gesture training for 4-6 year olds to improve communication (I think using electrodes to monitor brain response). They are doing research on hypersensitivity and sensory sensitivity in adults, but its a postgraduate research project trying to find out if people with autism have sensory differences from NTs.

Now, to be honest I wouldn't want to obstruct or undermine such research. I just get the feeling the criteria dont really address people living with autism.

The Medical Research Council http://www.mrc.ac.uk has 11 current autism projects costing £1.5m a year. These include autistic traits and foetal testosterone, episodic memory in adults, pre-school communication, twins, developing dynamic gaze processing, functional brain development in human infants, and human functional brain development over the first four years, genome project, brain anatomy, olivioceleberal networks & motor behaviour, autonomic and neural analysis.

Again I'm sure this is all very important stuff. But there's not much in here about people living with autism and their everyday lives.

There is a danger that we end up as laboratory rats for higher level research with outcomes decades down the line. There's nothing here for people with autism now.

But I don't think boycotting will work. I feel this is something NAS needs to pursue. Are we benefitting at all in the short term from all this research?

Excellent points IntenseWorld and Longman.

My niece had a very bad experience with CAMHS -they weren't aware of the different way that autiism presents in girls and would not listen when we tried to inform them.

We often get asked here to participate in research but local groups get frequent requests too. There is a huge amount of research done that does little but help its authors up the academic greasy pole.

But I think we have the power to change the focus of research. We don't need the researchers but they need us - no willing autistic participants = no research project. If we only participate in research that has the potential to help us then we can shift the balance. We should be asking What's in it for us?

There are different types of research.

What tends to affect us most on here are undergraduates (and occasionally postgraduates) inappropriately using sites like this as a quarry for research material. That really shouldn't happen. Some of the perpetrators are at respectable universities that should know better. It undermines the credibility of more important research.

A lot of research seems to be about understanding the causes and finding a cure. Also this research tends to deploy use of electrodes to measure brain response, or scanning during tests, aiming to quantify the evidence - trying to get scientifically measurable results.

Some other research uses qualitative evidence, interviews and observations to examine behaviour. The operation of these researches seems to fall well below acceptable standards - we are seeing failure to provide confidentiality or obtain consent, or honour consent. The universities doing this are niot doing anyone any good.

Research that might help people on the spectrum to better manage their daily lives - sadly this sort of research is not remunerative. There are no sources of funding. So very little is done.

There is a curious aspect to research - it is about income generation - most universities and independent research centres are in it purely for the money, though they need to pay for full time and part time staff, and overheads to retain work space and equipment.

So any research that the funding bodies, including Health Science and Social Science Research Councils, will give money to, has to meet those research councils' specifications.

The specifications rarely have anything to do with human needs or suffering. The research has to be justified by academically defined outcomes.

The fact that the research councils and other funders get their money largely from the tax payer seems to be neither here nor there.

(My first post since the anti-spam device was imposed - I'm really bad at solving these puzzles - here goes.......)

I'll give you an example, when I attended a CAMHS meeting regarding the diagnostic process for one of my children, the most senior clinician (responsible for the autism pathways for the whole area of the UK where I live) pooh-poohed my statement that autism is genetically related to schizophrenia.  If you have a close relative with schizophrenia you are more than 300% likely to have an ASD.  She was clueless and there had been a variety of media articles about the link between the two conditions and three others, it wasn't only the research articles themselves.  They are just not up to date.  And even more so, on female presentation of higher functioning autism conditions.  There is no excuse for the level of ignorance and I am much more in touch with the research than most of the clinicians I have encountered.

I agree that researchers are often not autism-aware. And because of this they do not research things that would be of use to us in our everyday lives. Autistic adults get very little help in coping with the world and research could help us get better sleep, use our talents better, cope with social interactions better etc.

If we keep participating in pointless research projects we are doing ourselves a disservice. I think we should ask researchers who want our help to explain how their research will improve the daily lives of autistic people. Once research has helped us with the big problems, they can go back to measuring eye movements or showing us dancing triangles.

I don't think it's necessarily the research itself that's always the problem, but what is done with the research results - who it is transmitted to.  By far, the biggest single problem is lack of autism awareness and when this is from the very professionals that are supposed to be recognising and diagnosing the condition it is shameful.  They aren't made to keep up to date on research findings and often have very outdated and stereotypical views on it, which can prevent people getting diagnoses.  Some research is just stupid, such as the study that found autistic people don't daydream.  This is of course ridiculous.