a sensitive question

[euphorbia]

I've name changed for this but am a regular. Does anyone have any statistics for the likelihood of autism occurring across families? What are the chances of a baby in one of my sibling's families being on the spectrum, seeing as DS has ASD? I've heard the 1:20 figure quoted for the chance of a recurrence within the same family but have never seen anything that referred to the wider family, iyswim.

This is so interesting, ds2's asd I had always assumed to be the direct result of brain damage (prematurity) as he also has CP, but he too had steroids & antibiotics, has severe asthma again I think linked to prematurity as he was ventilated.
But i have never understood where his bowel problems fitted, as a baby he would swing from awful diarohea(sp) to constipation, he still suffers from terrible constipation & bouts of awful stomach pains that don't seem to be in sinc with the constipation iykwim.
the only other ASD in the family has very severe asd also as a result of brain injury in early childhood so the DR's never counted that as an inherited link when assessing ds2.
There is lots of asthma, ecxzma etc in both sides of the family.
So maybe the brain damage is not the direct cause but the trauma of his prematurity the trigger???
Oh i'm confused now!

ds1 regressed following an infection (supposedly eczema herpeticum- can be fatal- although swabs were negative- the dermatologist was pretty convinced- he was blistered from head to foot) which was treated quite aggressively with steroids and antibiotics. It's quite a common history in 'biomedical' type ASD's. Something weird was going on right before though as he has a large(ish) mole which went all crinkly for a few months (was seen by a dermatologist who said it had become keratinised) and then right before he got ill swelled up like a large blister and started leaking a white fluid. The blistering started from there.

herpes itself is implicated in triggering ASDs as well - although usually via herpes encephalitis.

Allr eally interesting stuff!

mymatemax, does he have any food allergies? I am certain it cannot be coincidence that ds1, ds3 and I all have casein intolerances that were existent long before SN became a consideration- yet DH and ds2 (the NT one) do not. Severe stomach pains are very much a feature of this for me, with diarrhoea etc, but not on a totally predicatable basis- stress, all sorts can slightly affect the exact amount of casein we can tolerate.

DS1 also suffered birth trauma, from eclampsia and IUGR. And we have no idea what happened in my Mum's pregnancies, but she lost 4 boys at 28 weeks, then contracted rubella and lost that baby, then had me and my two sisters straight off- I was the eldest and came on my due dates. A rather strange obstetric history to say the least!

I definitely hold with the ASD is a definition of symptoms rather than one cause notion, I think there's an awful lot to be learned about the lines between HFA and AS- I think the language idea is probably the key but far too vague atm, I really believe its far more complex than can they talk at X age- DS1 could talk very young indeed, but even now his language shows huge idiosyncrasies and he won't talk at all in some situations, when his anxieties are high he just glues up all together.

A few years ago now I looked at some SPD stuff in psychology that indicated specific areas of damage in the brains ofsome affected individuals, and I noticed those were close to the aggression areas demonstrated in stroke victims- ever since I have felt it is likely that area was damaged in ds1's birth, as he has extreme aggression isues beyond the level of most ASD kids- his annual review forms came through alst week and his interaction with peers was rated as the lowest possible (1/10) because of this.

Some theories have suggested that the twinning process ( for identical twins) can cause chromosonal damage - as in the problem may arise when the embryo divides and it may result in only one copy of the DNA being damaged. This could account for the fact that ASD has not been described as being 100% for identical twins. There a statistically significant co relation between birth injury and ASD but no one has established a means of causition and it could be that underlying foetal abnormality causes the difficult birth.

I didn't know there was a link between autism and brain injury. Is it a well established link?

FWIW
There is no autism in my massive extended family. Following birth of DS1 I had PND and my immune system collapsed. Also DH had history of excema - asthma. DS2 regressed aggressively after MMR. He is pretty severe.
Worked on autoimmune system with DD and avoided vaccinations and she is NT.

Sphil a couple of people have pointed that out to me recently- a correlation (so they rise in frequency together, rather than being a proven link- statistical jargon in other words!)- apparently there's some stuff on the TEACCH or ABA websites? So somebody said but i forgot to look.

DS3's birth though was completely textbook. Maybe the birth thing is related to non regressive ASD?

All mine have had all their vaccinations, up to fds3's MMR which was due after ds1 was diagnosed. Next one is having separate jabs. I have eczma, its very severe in my family- one cousin spent several months hospitalised with it as a baby. BIL has verys evere asthma (and still smokes!), both my sisters have had arthritis since their teens.

There's a new journal that was published for the first time last week. Called Autism Research this month's carries an article on 'The Potential Role for Emergence in Autism' by George M Anderson. Not sure if you can get to see it without being a subscriber but it's interesting stuff. He talks about there being good evidence that 'autism is genetically heterogenous, with differing sets of risk alleles conbining in different groups of affected individuals'. There's quite a lot of talk in the paper about autism not being a single entity, which was nice to see.

I bet Uni sunscribe to that- will check their website

thanks yurt

Oh - would love to see that. Will google.

peachy I've never had him tested for food allergies but he doesn't have cows milk & I've cut out tomatoes.
He was given nutriprem formula from about 4 weeks until about 16 months before that he was fed (tpn?) by a long line in his foot, I have no idea whats in that.
He always had severe constipation & was given enemas etc, but also reflux so was on gaviscon, it was all blamed on low muscle tone.
Once he went on to cows milk he started swinging from constipation to the runs, we swapped to goats milk & the runs stopped. But he still has the stomach pains & not always when the constipation is worse.
We've recently cut out tomatoes as it makes him hyper & stimmy, he is usually so calm & passive.

Maybe i'm thinking too simplistically, but i can understand how the brain injury can cause the physical disabilities, learning & asd but I never have worked out why the food intolerances, i'd just assumed it was down to his CP & poor tone in the bowel.

Should I get him tested, what do I ask for??

If it's a casein intolerance (the same one ds1, ds3 and I have) it's still in goats milk etc- people vary in their levels of sensitivity but goats milk is a no-no here as much as cows milk. It's harder to manage because whilst there are plenty of actose free products, very few poeple are intolerant of casein in comparison.

How old is he? after the age of 3 it's OK to use soya milks, before that soy formula- but some kids are allergic to that (not that mine were though, soy formula literally saved Sam's life). I would give it a trial of a fortnight, take out all dairy (cows or goats or whatever) and use soya absed just for that time- if tehre's no improvement then it's not that. There are some amazing soy products out there now, the Alpro yoghurts are delicious for a start and easy to find in supermarkets.

Also, if tomatoes are out at some point salycylates might be worth an investogation as they contain the same chemical- but I would do casein first, it's easier trust me - Sam isn't supposed to have salycylates, casein, gluten- pretty much leaves us with a packet of crisps and slice of chicken LOL (but we skip the salycylates, there's a limit for everyone and that was mine).

I think the casein idea is that the proteins leak out through the bowel and cause damage to the brain, rather than brain damage causing the intolerance iyswim? The problem in my experience is that these things are often compound: there may well be kids who have what will one day be known as genetic ASD, but many have composite disorders and pulling them apart is always going to be virtually impossible. A friend of mine has a child who was premature, is blind, has GDD, Wilhelms (SP?) syndrome and has just been diagnosed with ASD as a primary diagnosis at 13!.

Goats milk is easier to digest though, and has a different form of casein than 99% of cows milk (same as guernsey cows though). It's not unusual for children with ASD to have digestions difficulties (which was the theory behind secretin) and that may be why some tolerate goats but not cows- they break it down more easily.

MM, makes sense- if I have goats, I don't get the stomach pains but still the diarrhoea. I can tolerate slightly more skimmed product as well simply because water levels are higher. Intolerances are about balance- mine is severe so I have to be very careful, ds3 has more enzyme than me so can have more (but gets the absences before any stomach problems materialise).

I think there is a growing consensus that many different gene mutations play many different roles in producing ASD symptoms - whether they arise in the first generation as spontaneous mutations or are passed recessively through unaffected females. It all adds up to a highly complex picture. The professor who dx'd my DS spent a long time discussing the separate heritability of ASD traits and mentioned that my DS might turn out to be like my brother. At the time, I was not sure as the ressemblance was not striking. Now as DS's personality has emerged more, I can see numerous behaviours, mannerisms and quirks that are a mirror image of my brother. Sometimes, it is like travelling back in time, as the similarity is so strong.

I do think that the genetics work needs to focus on the biomedical differences as well- especially those often seen in recessive autism. I'm not convinced about the focus on observable behaviours as being indicative of something cognitive. If you read the literature written by severely autistic non-verbal adults then they commonly describe movement problems as being at the root of their behaviours rather than say lack of interest in being sociable or even a lack of understanding of how they're meant to behave.

In my family, the theory that ASD is genetically inherited but also triggered by some other "insult" to the system might be true. My DH was married before - from which marriage he had two children, the second daughter being autistic. In our marriage, our second child is also autistic (my son). However, in both cases the autistic child ALSO has some other medical condition (in my son's case, a small hole in the heart). So it's as if all the kids might have had a tendency, but some other medical condition set it off??? Or, is it just that it affects some kids and not others, and it's the luck of the genetic draw (just like my son inherited the hole in the heart from me, but my daughter didn't). I gave my DS single jabs, due to the genetic risk, so I can't think it's vax in our case at least. By the way Yurt, on your last point, did you see that bit of research recently which shows that when people are imitating another person's accent, eg Scottish if they are English, the part of their brain governing MOVEMENT OF LIMBS is activated as well as the part of the brain governing speech. So it's as if, in imitating a non-familiar style of speech, the brain needs to activate physical and speech parts. Just thought that might shed some light on autistic speech delay and odd motor movements, if both parts of the brain are implicated in imitating speech. Or maybe I'm rambling!

Is that related to mirror neurons ancientmiddlemum? I find them fascinating- I don't think ds1's were working at all until he was about 7. He really changed once he learned to imitate- kind of understood his place in the family more.

I'm going to an international conference on ASD in May- am really looking forward to the talks on mirror neurons.

Thanks Peachy & Yurt, how you describe it does make sense. I think i'll stop the goats milk as well, he is 5 & we have just managed to stop his bedtime bottle i'd assumed his recent improvements & reduced anxiety is all just him maturing & stopping the bottle part of him growing up a little, but maybe his improvements are down to the big reduction in milk. Maybe stopping the bottle has been the trigger for some improvement.
His diet is very self limited at the moment so Isn't getting a lot of milk without the bedtime bottle.
Euphoria, sorry for butting in on teh thread but there's so much knowledge on here

MMM, is he the 'absent' type of autistic child? I only ask because its been noted by many people that if I have casein I slip away and can't be reached- very much like what the DS's experience, and I do think it's related. From my perspexctive it feels like there's a big sheet of soundproof glass between me and everyone else, and I can see things going on in a slightly time delayed sort of way, but I can't interact with them- bit like watching TV when you have flu iykwim? I'm extremely lucky in that a simple dietary change can eliminate that for me, I can't imagine being like that all the time. There's no way I could function at all.

(ah and yes you could be right about the anxiety- I gave into my MW's plea to eat mroe calcium yesterday, had some pizza with cheese on- and had a panic attack that lasted about 2 hours).

Peachy - your comments about 'absence' are v interesting. That's exactly what DS2 does - much less now he's on a restricted diet, but still when he's off colour or sometimes for no reason I can ascertain. Your description of how it feels is brilliant - tht's JUST how he acts.

And also - my anxiety is def related to diet - too much dairy and sugar in particular, but I think wheat plays a part too. I was on a diet two weeks ago (only lasted a week ) and felt very serene - if I think about it I'd cut right back on those three foodstuffs.