Where do you think autism research should be targeted?

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Inspired by the other thread- i'm interested to know what parents think should be under investigation as it seems there is big money around to fund this.
For me, I would like more research going into looking at those children who have improved and why this has happened.

Yes. what interventions help best. And find out if it is genetic - find the gene! or if it is something else. I don't know about anyone else, but I have always felt the need to know. Both mine have autism and I think it's genetic in their case, because there are many people in my family with traits, including me.

and improvements to early diagnosis, because it is certainly well known that early intervention gets the best results.

It would be great if they found a easier way of diagnosing it (through a bllod test, brain scan etc...) and then children would be diagnosed earlier.

I think things have come a long way in the past 10 years, there's more therapy on offer, some things are still a little bit new and are not funded by NHS (such as ABA and sound therapy) so more research could go into those to prove that they are worth funding.

yes find out if genetic, or if its something i did in my pregnancy or something i am giving him to eat that has affected him. I wish I knew why I had one baby with no problems and the next baby had lots of problems. I never did anything different but they were very close together, maybe my hormone levels were low or i did not have enough vitamins when i was pregnant second time round. I dont think I'll ever find out but I do always wonder why my little boy has differences to most other children and I worry for him so much. Also would like to have more children but cos dont know why this has happened im too scared to, incase it is in my genes and another child could have even more problems and then i might find it really hard to cope.

A clear idea of what interventions/therapies actually help. It is mind boggling all the possibilities and entirely impossible to try everything or even know where to start.

Cats, there is a pretty good book on the market already by two respected researchers, Leaf and Maceachin, which reviews many different approaches and treatments, giving you the lowdown on each in plain English.

Here.

There's plenty of research to support certain therapies, - what's the point of them if no-one is prepared to change the system to one the evidence supports.

Personally, I'd like some research into environmental triggers/causes such as toxins and intervention during labour and birth, with particular focus on the role of oxytocin.

A definitive biological test - though I don't know how likely that is if there's more than one cause.

I'd love for it to be easily diagnosable rather than all being down to opinion, it would stop parents being fobbed off for years by medical professionals and schools and would stop the whole 'quirky' children are labelled too easily argument as well.

Then they can look at causes, lol

There's plenty of research to support certain therapies, - what's the point of them if no-one is prepared to change the system to one the evidence supports.

Yes, the problem isn't with funding studies - the problem is with funding treatments!

The only stuff that every gets approved by the NHS is stuff promoted by drug companies who spend millions on getting it approved in the hope they'll make billions from it.

There is loads of stuff that helps. And the NHS does not want to know because they don't want to fund it.

yeah, we know what interventions work, there is overwhelming evidence. It is disingenuous for researchers to suggest that we don't know what works. Since at risk children are identified far earlier in other countries I'd suggest that we don't need more how to identify young children at risk research either.

How about research into why the interventions that are deemed to be the most effective, based on current research and evidence, are denied to children despite same evidence showing it to be cost effective, both in the short-term (if standardised and mainstream) and in the long term!?

Now THAT would be interesting!

Thank you for that link moondog think I will order it. It's been six months since ds's diagnosis and we've put lots in place but it is still rather overwhelming trying to figure out what we should be dOing for the best!

A definitive test which essentially means finding the gene. I think that the reason why interventions are poor is obviously down to funding. I dont think research is necessary to tell us what works well unfortunately.

Autism in girls, the prevalence and presentation. Is it really more common in boots by so much, or is it a case (in part) that more girls slip through the diagnostic net?

FWIW, 4 years after entering the black hole that is non-defined SN, I STILL think DD1 has ASD as part of her condition. I still think her selective eye contact and superficial social skills are pulling the wool over her ASD specialist consultant's eyes, and people still do the 'eyebrows shoot upwards' thing when I answer 'no' to the has she got ASD question.

If it helps Lougle the professionals have been divided as to whether or not my DS has ASD alongside his down syndrome for about 7 year, we are now about to go DX route after all these years.

I'm of the school of thought that believes that the "spectrum" is flipping vast it can't possibly be just one condition, but is probably around 20 different conditions with 20 different causes from violence/trauma in pregnancy to dietry intolerances & genetics.

I'd like to see the money devoted to 4 areas:-

1. Actually using what we DO know to help these kids>

I'd like to see more research into WHY the proven effective interventions are still so bitterly resisted by the health and educational establishment. I'd like to see the money put into embedding true accountability into the existing system, staff training so that EP's, Autism outreach etc don't perpetuate a culture of low expectations and achievement. Star said it better than I can!!!!!

1. Early intervention in reality, not just rhetoric.

I'd like to see HV's, primary teachers & nursery staff trained to recognise the "red flags" for all neurodevelopmental disorders (not to psuedo diagnose but just to know when summat isn't right & a child should be referred to the medical profesionals). It's not always great when a 2 year old spends every nursery session lining objects up & counting them iykwim

1. The development of new educational establishments - there seems to be a real dearth of places that are suitable for all girls and any male at the higher end of the spectrum within the state sector. I've met several adult women over the years diagnosed with severe depression that knowing what I do now, I think were probably unrecognised & therefore unsupported aspies.

1. Dietry interventions. The theory behind the GAPS diet & the research of David Horrobin fascinates me & I'd like to see it developed & explored further. Folic acid prevents spina bifida - will we one day find that omega 3 or zinc supplementation for preggo ladies can reduce the incidence/severity of autism?

Not much of this, is "research" as such, partly cos I feel strongly the whole UK SEN industry prefers endless navel gazing and tail chasing to getting off it's collective a%%se and actually HELPING these kids.

That does help, dev. A lot. I know that practically, it might not mean anything - DD1 is in a great school which educates the child, not the condition. But it would help me to know where she fits, IYSWIM, and reduce the pain when she admits that she doesn't care if I was hurt when she was so naughty, but she does care if I write about it in her book.

'I feel strongly the whole UK SEN industry prefers endless navel gazing and tail chasing to getting off it's collective a%%se and actually HELPING these kids.'

I'm with you on that one.

Another 'vote' for the dietary issues. Huge minefield, and naff all expertise. I'm finding myself reputedly becoming the local "expert" and I'm far from it.

Early intervention, yes, but it's sort of getting there, afaics. The pathway is there, the diagnostics and awareness have improved vastly.

Finally, AS sensory integration. More education for the staff in mainstream classrooms, more awareness, yadda yadda. Huge issue, pathetic attempts on the whole to even recognise it, let alone address it. Don't press the "play" button because I'll rant and rant on about it. If I ever get to do my doctorate, that's what my thesis will be. (Ed Psych). Grrrr.