ASD / Autism - What do you think caused it in your family?

[Wanderingthoughts]

Inspired by my own experience and talking to two friends who's children are autistic.

My DS, 8, diagnosed ASD (formerly Aspergers, geeky-intelligent type). I think comes from his father (my ex). Their ASD traits are very similar and I think his father would definitely be diagnosed. DS also has ADHD which I think comes from me (I have lots of traits) and this is his primary diagnosis and much more prominent. So in our case, I lean towards genetic, although I was anaemic during pregnancy, had a low lying placenta and DS was born via induction and ventouse.

I'm pregnant with DC2, this time a girl, and my current DP has no ASD traits, and none I can see from anyone in his family. I am, however, anaemic again and this time facing having an iron infusion as the tablets haven't worked. I've read some research that low iron in pregnancy can be a potential cause of autism.

My friend has a 3 children, only one (DS2) is diagnosed Autistic. He has a more classical presentation, non-verbal, developmentally delayed and requiring a special school. She feels his autism comes from a long and traumatic birth, and she has no family history of ASD.

Ditto for another friend, she also has 3 children, and her DS1 is both Autistic and has learning difficulties. Her other two children are unaffected. Similar to my first friend, she thinks the cause of his autism was a long and difficult labour and birth trauma. No family history of ASD, although I can see some ASD traits in her DH!

What do you think the cause, if any, in your personal family experience?

Most seem to agree it's genetic, I wonder what causes 'severity' though? As in some families, you can have an autistic DC who is quite 'low needs', verbal, able to attend mainstream school, then a second autistic DC who is non-verbal, little awareness of the world, special school, can't be independent.

I don't measure severity. My DC are autistic full stop.

My 'low needs' DC sailed through the early years, started to struggle a wee bit later in primary and had to be taken out of high school, is now selective mute and now has very high support needs. At an age where she should be able to do basic independent tasks she now needs someone with her at all times. She will not leave the house. That's said they are ever changing; when her brother was in primary I didn't envisage an independent future for him. He was only in mainstream because I couldn't physically get him to the special school in the city but he had a support teacher and was rarely in class. He has now moved in with his girlfriend and is sailing through university.

The contrast between them and how they have literally been opposites of each others is astounding.

I think it’s primarily genetic but birth trauma is also a factor.

My kids are autistic and I am late diagnosed. I was also born very prematurely (it’s a known risk factor for ADHD). My husband also has numerous traits, inherited from his quite obviously autistic father.

I think neurodivergent people, diagnosed or not, find each other and have neurodivergent kids. I wish more research was done re. the impact of premature birth and birth trauma.

Cope how?
I'm sure you will tell me about people in America with non verbsl.autism who has written books or that professor who.was apparently non verbal until he was 11 and now teachexs at Oxford
however many non verbal people with autism struggle to communicate even their very basic needs ,my son has severe autism and is non verbal as do many kids at his school they struggle every day
As for the severity being down to co morbid disabilities not the autism how do.you separate the two.when they are intrinsically linked ?

Of course but my son can't even tell.me he's thirsty or he need ,s a wee

My DH is and I'd guess genetics. Although none of his family members have a diagnosis other than him. We have a DS, 17 months, and is so far showing no traits (he's very talkative, social etc) but I won't be surprised if he does eventually, as he's still so young. DH was diagnosed at 4. He had delayed speech.

A verbal autistic person with no other comorbid conditions is absolutely not facing or creating the same challenges as someone who has autism plus (insert specific here). I can’t imagine anyone would think that research into treatment or ways to reduce the risk of that incredibly difficult outcome is a bad thing.

I also think that the world would be completely different and worse if there were no autistic people in it. It’s also pretty difficult to experience people wishing for a world where you and your children don’t exist because that’s what no autism would mean. We are autistic, not people with autism, it’s in every part of us, it can’t be removed without removing who we are.

It leaves me afraid of research into obliterating autism either by avoiding it occurring or by treatment that turns an autistic person into someone else while also seeing the need for to something that would give a decent quality of life for the autistic people and their care givers who currently do not have that.

Lots of the time the "severity" is actually down to comorbid disabilities NOT autism.

They are not disctinct comorbid disabilities - they are all part and parcel of the one condition the individual has. Their condition may have aspects that are given names like ‘autism’, ‘adhd’, ‘learning disability’ but these are just descriptions of observable symptoms of their one conditions. Just like ‘hot flushes’, ‘brain fog’, ‘insomnia’ are all symptoms of menopause.

@Wanderingthoughts that's an interesting question. For the sake of understanding I'm going to preface this by saying that when I say less severe I mean someone who has a normal or high IQ, is able to attend mainstream school and/or live independently. When I say more severe I mean someone who has a low enough IQ to be classed as having a general learning disability, needs to attend special school and/or is unlikely to live independently. (I know there are complex cases and that anxiety and mental health can have complicating effects but for the sake of being able to discuss let's start there...)

I have one DC who is more severely affected and has a learning disability. I am told that learning disabilities themselves are also highly heritable, but there is no evidence for that really in our family history apart from a distant cousin (and who knows if that would have been called learning disability or autism today??). There is however a lot of evidence for less severe, 'Aspergers' type autism in the family history. So we are left with it being a 'de novo' mutation for that DC. It's not very satisfying to be honest. It is strange to think that, whether we as a family are mostly NT (what we used to think) or mostly ND (what now seems most likely) that DC is still about as different from the rest of us as they always seemed with their severe presentation.

Because that DC's disability was put down as most likely due to a de novo mutation, but no certainty, we were considerably in the dark about likelihood of recurrence for future DC. It hasn't recurred, but I don't know if the others being ND makes a recurrence of that severe presentation more or less likely in any hypothetical further children.

It does mean that I really struggle to see Autism as a benign thing the way that some less severely affected folks seem to do. If it was just the way our family is different, minus the severely affected DC, it wouldn't seem like that big a deal. But for that DC it really is a big deal. Slightly contradictory, but I also struggle to think of the less severe presentation as 'Disability' with capital letters when I compare other family members to the severely affected DC.

I know another couple of familes in a similar position with a lot of ND in the family and one severely affected DC. I wonder what the odds are, if a couple both have ASD, of having a very severely affected DC?

Last thought @FedUp1306, I agree that Autism isn't 'quirkiness' - ie it isn't just some funny harmless personality trait end of. But I do think that masking or coping behaviours can look a lot like 'quirkiness' to an outsider. I think 'quirkiness' is just a term for 'strangeness that we choose to find endearing'.

If you have an autistic child who is non verbal, violent, and who cannot use the toilet you are telling me you wouldn’t appreciate the heads up about that during pregnancy or new treatment’s available to alleviate or improve things?

@Quitelikeit

read my first paragraph. Of course I’m not saying that.

Genes, obviously

Low functioning autism is a cruel cruel thing to be born with.

If people don’t like saying low functioning maybe the ‘experts’ who come up with the terminology could think of a new word as it has to be described somehow and ‘autistic’ just doesn’t cut it

@Quitelikeit It's a tricky one as under the old terminology, those with Aspergers were assumed to have very little support needs, and so accessibility to support was harder.

BUT in saying that, my DS's autism is not comparable to that of my friends DC. You cannot compare the support needs of someone who is in mainstream education, can hold conversation, is independent but who needs support with social skills to a non-verbal, violent child who isn't toilet trained at aged 11 and whose parents are looking at residential placements. They have totally different support needs, and the diagnosis of 'autism or autistic' seems meaningless.

Neurologist suggested DDs ASD was down to her prem birth and brain damage. Believed that for 10 years but now DH has been diagnosed.

🤷‍♀️

I was premature and traumatically delivered via forceps.
My ds was overdue and perfect birth.
Neither of us officially diagnosed yet, but very much suspected.

My grandmother was incredibly bright, idiosyncratic, went her own way. She was also very unhappy at times. Her family is full of people who were 'off' somehow. I definitely see a link there.

Autism has given us so many incredible geniuses. However is it awful to live with sometimes, and I've contemplated suicide often and come close a couple of times.

So ASD is such a vague concept on so many levels. The boundaries have been adjusted and there’s the whole dubious co-morbid thang. At some point we are bound to return to more closely defined criteria

@mastertomsmum I would have thought so, the current criteria and diagnosis does seem too vague to be helpful in explaining what is now such a wide and vast spectrum.

Really interesting thread. Sorry if this is a silly question but why is the term autism used to describe verbal/aspergers people and people who are non verbal with very high needs? I know autism is a spectrum but these two conditions seem to have absolutely nothing in common (with maybe the exception of both don't like disruption to routine). It's like apples and oranges so why are they all lumped under the autism umbrella?

It’s interesting and when some parents have got DCs dyslexia, dyspraxia, ADHD etc. diagnosed they find themselves asked to get them checked out for ASD. It does not always seem logical

@mastertomsmum I think the thought process and current understanding is that many conditions involving that specific part of the brain can overlap, hence people end up with dual / lots of diagnosis.

I've met lots of people who are dyslexic, have dyspraxia or ADHD and definitely have 'autistic traits' - whether or not they'd meet the criteria for diagnosis is another question.

Agreed 👍🏼 Just now there does seem to be a fair few connections made that are leap

Yes, this has been my exact experience too.

My understanding of the current diagnostic criteria is that autism is a social communication disorder, therefore a diagnosis of autism would cover an individual who is non-verbal AND an individual who is verbal.

I have 3 dc with autism/Aspergers syndrome. Dc1 has Aspergers syndrome and generally manages quite well with support. We get a lot of comments about how he "doesn't look autistic" and you have to know him quite well to notice he has it. Dc2 has more obvious autism. He stims a lot and has mental health issues although he is very clever, especially in maths. Dc5 needs constant supervision at the age of 9. He doesn't have learning difficulties and is brilliant at maths. But he wanders out into the road given half a chance and can't be trusted with scissors because he will cut everything including his hair and eye lashes.

Dh has Aspergers syndrome. I think mostly it's genetic. But dc5 had a traumatic birth. He was induced and didn't react very well to the drip. He was in the nicu for 5 days and screamed all the time he was awake unless I was holding him. I think that is why my youngest is more severely affected than my older 2 who had very normal births and never had to leave me.

Boyfriend is extremely high functioning Aspergers. Both sized of his family have the traits and numerous members are on the spectrum.
His dead father and at least one of his paternal uncles were ASD.
His late maternal grandmother was also most likely on it and his maternal uncle has traits.
His mother has some traits but is good at masking it and has many other issues.
His maternal aunt's eldest DS has dyspraxia and BF 8s certain he has other issues. His maternal aunt being neurotic & favouring his younger brother did not help the older cousin in his development.
BF is extremely glad he can't have kids, as he says he'd hate to inflict any sort of autism on them. He had a tortured childhood with the double whammy of extremely high intelligence and often poor physical health - again most likely inherited in most part.

One of his best friends is more severely autistic than BF is and his eldest son is on the spectrum. Friend's father and possibly paternal grandfather were also on the spectrum. The father drank himself to death after being diagnosed as he couldn't cope with it.
Boyfriend, his friend and various about 25% of other boys who attended their special school were on Spectrum he reckons. Of those one has an autistic child. Many others have chosen not to have children because of the possible difficulties occurring.
BF's Dyspraxic cousin is unlikely to breed despite having a girlfriend currently (she is also special needs).

It's hard to hear him sometimes over the misery he's gone through. He's also extremely glad his sister's two sons show no signs of traits.

I don't think anyone in my family has any autism issues. It's hard to get my head around the struggles autistic people have to deal with. Sad 😢