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Here are some suggested organisations that offer expert advice on SN.

autism/autoimmunity link

(21 Posts)
saintlydamemrsturnip Tue 14-Jul-09 08:39:09

no shit sherlock

Parents have been saying this for years- the whole time I've been on the autism scene (over 8 years now). Research into type 1 diabetes includes rafts of papers on the role of casein and/or gluten in triggering the condition along with a leaky gut (a model which of course is almost unpublishable in the autism field if you want your career to stay intact).

Family history here stacked with type 1 diabetes and a bit of MS thrown in for good measure. I will watch with interest.....

anonandlikeit Tue 14-Jul-09 09:11:40

Why won't the UK medical world accept this type of research & invest in carrying it forward?
Just a small sample on MN would seem to suggest a link, surely we are not that unique as a group grin

Iteresting for us the bit about prematurity.
I can remember when ds2 was dx with Autism, I asked the paed "is his autism caused by his prem birth" her answer "there is no link & no evidence to suggest it is the cause"

In our family history is full of rheumatoid arthritis, i'm not aware of any of the others.

troutpout Tue 14-Jul-09 09:13:15

Can't get the page to come up for some reason

saintlydamemrsturnip Tue 14-Jul-09 09:21:07

Oh really troutpout, have just checked and it's OK here. It's on the the USA today website (I found it via todays schafer resport). I will take time later to follow up the original paper.

anon - the UK medical profession as a whole is so ignorant about the biomedical/physiological causes of autism (general of course). It's still treated as something psychological - or at least contained within the brain. Of course the condition itself doesn't help as it is so complicated so there are probably numerous things going on giving the same end result.

So much of this sort of research is going ahead in the States now though - thank goodness.

anonandlikeit Tue 14-Jul-09 09:31:30

Thank god for the internet, otherwise how would you access the sort of research being done in the US.
Why won't the UK medics listen or join forces, is it purely down to cost as usual?

I actually believe that ds2's auism was caused by the brain trauma & his prematurity so i count ourselves as the lucky ones, we have a cause. But it could still be that he, like many others is predisposed (is that the correct term) to developing autism if given the triggers or environmental factors.

Maybe genetically there was always going to be that weakness just needed something to give it a poke iykwim.

saintlydamemrsturnip Tue 14-Jul-09 09:34:03

I think it comes down to the research work in a way. In the UK 90% of the research into autism is done by psychologists - nothing wrong with that, but it means that autism is thought about in a different way than it would be if there was also medical research going on. The conferences organised here on biomedical aspects of autism are organised and run by parents so not taken seriously hmm.

saintlydamemrsturnip Tue 14-Jul-09 09:37:43

Also of course the whole Wakefield thing. Because his model gave a role to the MMR (and natural viruses as well - but also MMR) this was unacceptable and so ground to a half.

In the States a lot of the biomedical research is funded by parent run bodies- these have huge funds now but are more likely to fund this type of research (at least intitially it then becomes more mainstream).

Here the NAS doesn't fund research but is influential and is now very much run by 'militant Aspies' who are are often very anti the biomedical angle to autism.

So it's probably politics rather than funding as such, but of course politics affects funding.

anonandlikeit Tue 14-Jul-09 09:44:55

I kind of guessed much of it may be political. I sometimes think NAS should be N aspergers S.
I went on a NAS course recently & I was the only parent there without an aspergers dx. They all had very real difficulties but very different to ds2.
Also they did seem to have strong family history of aspergers several of the families had more than one child with ASD.

However none of them had the bowel & digestive problems that ds2 has although on here it seems to be quite common.

troutpout Tue 14-Jul-09 09:49:21

Can you elaborate a bit more about your ds's digestive probs mrs turnip?
ds was such a sickly baby and toddler (was always blardy ill)...i've always wonder about that too

saintlydamemrsturnip Tue 14-Jul-09 09:52:07

aha! Don't get me started

I did bring up with the NAS head office why none of their courses are suitable for parents of children at the non AS end of the spectrum (except earlybird of course which is) and receieved the reply that 'parents of children with AS need more help'.

So I didn't bother renewing my membership as I didn't think they represented our family. Don't want to take help away from anyone but if they honestly believe that the other end of the spectrum has its needs fully met and families don't need support well they're completely clueless.

What you noticed about the family history is 'official' and becoming well understood. Often in AS there is a a family history and the broader autism phenotype is seen within the family. It seems to be caused by the effect of many genes.

Other types of autism- those with biomedical/regression etc features usually have no family history and the genetics appears to be different- more or a genetic susceptibility + trigger. They're different things.

saintlydamemrsturnip Tue 14-Jul-09 09:55:23

troutpout - mainly we see a reaction to foods which leads to stupid amounts of headbanging (hard enough to cause bruising & loss of hair) - it must affect pain sensation.

When ds1 was younger he had a lot of constipation and overflow so bowel movements were a constant daily nightmare.

He had other features of biomedical issues such as red ears, severe eczema and repeated ear infections. He did have a lot of antibiotics as a baby, so we did a lot of probiotic saccromyces and for him that worked well. His other biomedical issues seems less extreme than many cases.

anonandlikeit Tue 14-Jul-09 10:01:03

Ahh now it makes sense, see who needs NAS when there is MN & you grin

DS2 still has severe constipation at times but the swinging from constipation to explosions stopped when we removed cows milk from his diet.
We see a change in his behaviour if he has too much tomato, particularly tomato based sauces etc.
He also suffers from heartburn with certain foods.

Davros Tue 14-Jul-09 19:25:04

I went to a fancy fund raising lunch today at Cliveden for this charity http://www.autismspeaks.org.uk/ which exists to fund research into causes of autism and has a very biomedical focus. The other side to wanting such research is that it can tend towards "cure" and "prevention" which I don't have a problem with but some certainly do. John Major was great (didn't realise he has a 9 year old grandson on the spectrum) AND I won two, count 'em, TWO raffle prizes!

saintlydamemrsturnip Tue 14-Jul-09 19:42:33

Hey <high fives Davros>.

Yes Autism Speaks is of course parent run originally (I think grandparent run at the moment) and huge funder now - but much hated by the Mike Stantons and militant Aspies of the world (even more so for promoting Autism Every Day). They had a big presence at IMFAR last year and I thought they were fine. But I think these issues around cure and prevention are an argument for recognising the diversity within autism. For some cure/prevention is entirely appropriate (as it would be for brain damage) for others not so.

Did you talk to John Major? grin

jg3kids Tue 14-Jul-09 20:24:28

hi peeps

just wanted to share something. I read somewhere recently that simon baron cohen (NAS and Cambridge Autism Unit) said that autism is 60% genetic and 40% environmental. When my son was diag 2 1/2 years ago they said it was 98% genetic. When my neice was diag 12 year ago they said it was 100%! what I always wonder is - when they talk about the environmental aspects they never then discuss what they are????

J

p.s in my family we have ulcerative colitis, hypothyroidism, coeliac, rheum arthiritis - spread about on both sides of family.

saintlydamemrsturnip Tue 14-Jul-09 20:31:53

Lots of work going into environmental triggers (esp from Autism Speaks). SBC works on the subgroup of autism that has a high heritability (ie AS).

Davros Tue 14-Jul-09 21:21:27

Unfortunately I didn't get to speak to JM although I would have loved to (I've always had a soft spot for him). But I did ask a question after his talk, others were asking about politics of health care, war etc and I asked him where he stands on Steve Harmison! Brought a smile to his face and he would play him shock

PipinJo Tue 14-Jul-09 22:25:49

Message withdrawn at poster's request.

saintlydamemrsturnip Tue 14-Jul-09 22:39:37

Oh I need to email you PipinJo (sorry it's my not often used email so I forget easily). Will do so first thing tomorrow.

Ah of course you have the cricket connection Davros....

PipinJo Tue 14-Jul-09 22:42:43

Message withdrawn at poster's request.

saintlydamemrsturnip Tue 14-Jul-09 22:49:21

I know. I remember my Mum having gold injections in her car when I was a kid (she was/is a community nurse). They were beautiful!

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