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a sensitive question

53 replies

euphorbia · 16/03/2008 17:50

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.

OP posts:
PersonalClown · 16/03/2008 17:53

Interesting!
I have no idea but am going to stick around to see if anyone knows the answer.
Maybe this is why my DBs are reluctant in wanting children.

moira199 · 16/03/2008 17:54

I think it would be very hard to be a figure on it given the range of disorders that display ASD features and that few of the genetic causes are known. Is the sibling male or female?

TotalChaos · 16/03/2008 17:55

not aware of any research figures on this topic, but then as both me and DH are onlies it's not really been a consideration!

moira199 · 16/03/2008 17:58

put a figure on it ! I meant

Peachy · 16/03/2008 18:06

Hiya

the definitive answer (unless Yurt knows better) according to Prof of ASD at Uni is- nobody knows. This is because ASd probably isn't a simlpe geneytic either or syndrome- there's usually triggers involved. What those are vary of course, otherwise we could just eliminate them.

The stats we have been given for thsi baby with 2 asd siblings vary between 20 and 80%, we're avoiding triggers as far as possible- I'm going GF / CF (bah!) when he's born, i've been careful about my intake of tuna etc (craved it with ds3), all the little no link whatsoever known things that vcaried in my pregnancy with ds2 (the NT one), sucha s he's the only one that ahd vitamin K orally so this baby having it orally too.....

Both my sisters have sons, I would say one is possibly Aspergers, but only possibly and his Dad is very like that too (I would say Dad is extremely anal as opposed to ASD iykwim). Dh's brother hasn't even managed to leave home at 34, let alone get himself shackled and acquire a family!

euphorbia · 16/03/2008 18:20

I'm talking about my brother and his baby is male too. He (my brother) possibly has a few traits of AS (as does my dad) but nothing I would have latched onto at all if it wasn't for DS (and I do have a tendency to see ASD everywhere!) They've been talking to me about vaccinations and I just don't know how 'alarmist' I should be. I know for a fact that if we had any more children I'd do exactly the same as Peachy, but I don't know if I'd do the same if it was, say, my sister who had the autistic child. They don't appear to have thought about a possible link at all and are nervous at the best of times, so I'm doing a bit of a balancing act atm between saying what I really think and not wanting to worry them.

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yurt1 · 16/03/2008 18:56

Depends how many questions they're asking really. There's no simple figures. If they want some recommendations I'd just suggest reading Richard Halvorsen's book -The Truth about Vaccinations. It's not about autism as such and is a book I'd love every new parent to read. He's an NHS GP, sensible but pretty outspoken. He seems to have thought about the pros and cons of the issue.

Don't think you can say too much though. Presumably they've considered it......

yurt1 · 16/03/2008 18:59

I do tend to think if a family shows autism traits then that autism is far more heritable than if a family shows autoimmune traits (when the autism is more likely to be triggered by something that affects the immune system such as vax).

In other words I think/suspect (broadly) that one form of autism (tends to be AS) is heritable in itself and the other form (can be HFA or LFA) the predisposition is inherited then triggered. No published evidence as such for that afaik, just seen it talked about and it makes sense to me in the families i know.

moira199 · 16/03/2008 19:06

I know what you mean about seeing ASD everywhere. I am becoming convinced that few people are not ASD I did once have a health visitor once who was 'severely neurotypical' in that for her life was about nothing but talking and constantly engaging with people to the exclusion of any interior life. About your brother, I don't think very much research has been done on a familial paternal link to autism (although a paternal link is seen when looking at mutation of genes) as it used to be assumed that male ASDs did not marry or have children. The risk is probably not high but in the worst case scenario, if the signs can be spotted, early intervention can make a difference.

euphorbia · 16/03/2008 19:16

Well if I'm right about the AS traits in my brother and dad then we have both genetic and auto-immune /inflammatory issues in our family - my sister is asthmatic and one of her four children has Crohns, whereas my Dad and I have IBS. My brother's baby has already shown some intolerance to formula milk which made my antennae go up a bit.

Don't know why I bothered to name change - if any of my family look in here it'll be perfectly obvious who I am!

I have a real worry about being seen as a harbinger of doom - think some members of my family think I'm totally over-reacting!

OP posts:
yurt1 · 16/03/2008 19:32

oooh I would be wary about crohns - hmm can see the concern.

Really I'd perhaps try and recommend RIchard Halvorsen's book. It's not about autism but it does talk about Crohn's.

Taliesintraction · 16/03/2008 20:22

I try to keep up with research and I am not aware of any suggestions that AS is inherited.

Actually that's quite odd, for most things there is someone somewhere suggesting they have found a genetic link.

mymatemax · 16/03/2008 20:32

But Talies it must be widely accepted that there are inherited ASd'S,
In all ds2's assessments all the questionnaires asked about, family patterns, ASD, etc.
For ds2 his (afaik) ASD is due to brain damage (prematurity) but the Autism paed was very clear in her questioning about ruling out a family link. In fact ASD would of been suggested earlier if there was a family history.

Taliesintraction · 16/03/2008 20:53

Remind me to have a decent look.

Questionaire type assesment stuff usually looks for family comonality but thats as likely to be because the medicos are looking for material for a conference paper as anything else.

I know I am a cynic....

yurt1 · 16/03/2008 21:09

There is a strong heritability for autism (shown by twin studies).

What interests me is that I strongly suspect there are 2 forms of inheritance. One for AS type traits (the vast majority of children I have met with AS report inheritance via undiagnosed parents and grandparents - antisocial grandfathers etc etc). The other for autoimmune/allergic type conditions- which appears to lead to a more 'biomedical' form of autism- triggered by various environmental agents. Very like this model described in Gut in 2006 - not for autism- a general autoimmune disease model, but very like reading some of the models proposed for autism.

Peachy · 16/03/2008 21:52

Tallies the MA Professor of ASD is quite adament that it's an inherited condition, and if you could only look at my family history you'd see it very clearly imo. Actually, as soon as baby arrives we are being followed by a study in a London hospital observing the early social interactions of infants absed on heritability of ythese disorders. Ds1 has a dx of AS / HFA (ita ctually states that on his dx letter), ds3 has probable HFA with severe SLD. FIL has some defini6te AS traits, MIL has OCD, my Grandfather ahs clear AS, as does my Mum and probably I.

staryeyed · 16/03/2008 21:58

Yurt1 my Dad has very odd behaviour I would think mild aspergers maybe not enough to be diagnosed but definitely traits. He also has auto immune issues galore. My brother also has auto immune problems (and was also very late in talking). My sister is similar to my dad with eczema. My partner and I have no known problems and my son has ASD. I also believe that Ds has had autism from birth but biomedical protocol is really helping him. I am not very clued up on these things but I always wondered if the aspergers was the inherited part and the auto-immune problems made it autism - just my own musing with absolutely no evidence.

Peachy · 16/03/2008 22:02

My own theory with relation to my 2 is that ds1 was taken off the milk with casein in at 4 weeks old, whereas ds3 was BF / fed with a rpescribed but not CF formula (was LF) until past 3- but he didn't show signs until then either. OTOH ds3 doesn't have some of ds1's other issues- such as the severe dyslexcia, indeed ds3 is showing a very advanced ability range in computer skills, way above that of either of his brothers or any other child in his school (and he's not yet 5 and has been taught nothing). Dh was having programs (for those funny Spectrum computers lol) published in his early teens though so there's indicators where it comes from....

Peachy · 16/03/2008 22:02

Oh and Grandad has been banned from most of the shops in his local seaside town due to the constant abuse / inappropriate comments he makes at people, definite issues there!

PipinJo · 16/03/2008 22:15

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ouryve · 16/03/2008 22:16

I have no idea what the stats are and I imagine it's hard to pin down for something so clearly multifactorial as ASDs. I know there is an accepted link, though

From a purely anecdotal viewpoint, even though this is the first generation to receive any formal diagnoses, there are very strong spectrummy traits right through my maternal family tree. In the current generation, my niece appears to be neurotypical, but my nephew is diagnosed with ASD, which got my concerns about DS1 taken seriously, leading to a diagnosis of autism, which in turn got my concerns about DS2, now 22 months taken seriously and he is now on the evaluation route.

It goes to show how different the disorder can be, though, even in the same family, because my two sons really are like chalk and cheese. DS1 is hyper, while DS2 is quite passive much of the time, DS1 loves food and can't get enough while DS2 is picky. DS1 is relatively only a little language delayed, but was clearly echolalic from an early age, while DS2 is still totally non-verbal. You get the picture.

Peachy · 16/03/2008 22:20

Used to nurse twins with ASD, one was extremelys evere- completely non verbal, extremelya ggressive, needed 1-1 care all through the day. His twin (identical) was in the lower care part of the unit- some language, less aggressive, some self care skills and just needed the higher end of supported living, always wondered what that signified

PipinJo · 16/03/2008 22:24

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yurt1 · 16/03/2008 22:42

Very very very generally Pipin - yes (my belief) but I think the 'triggered' form is far more variable in severity. Although obviously there are exceptions on both sides. Remember autism is not one thing though- it's just a collection of behaviours that might arise because of various different underlying conditions.

Whether it's inherited in a straight father to son with AS type way, or a genetic predisposition which is then triggered type way it is highly heritable.

sphil · 16/03/2008 22:53

This is so interesting. DS1 (6) has mild AS traits but is undx. He had all his vax, apart from MMR booster. He has no auto-immune problems at all. DS2 (5) has severe ASD. He had a life threatening staphlycoccal infection at 10 days old and was pumped with antibiotics and steroids. He developed eczema at 4 months (more steroids), asthma at 12 months (yet more steroids) and has multiple food allergies and intolerances. He too had all his vax.

The two boys were so similar as babies/young toddlers that I used to think - well DS2 can't be autistic because he's so like DS1, and he's DEFINITELY not autistic. Now I think that they both have a genetic susceptibility - but DS2's was 'triggered' and became severe ASD, whereas DS1's wasn't, so is either mild AS or the quirky end of NT.