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.
