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

403 replies

Wanderingthoughts · 13/06/2023 11:00

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?

OP posts:
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BaseDrops · 13/06/2023 21:11

BaseDrops · 13/06/2023 21:08

Ok, Where do you think autism came from in your family?

Wide open neutral question. It won’t stop people inferring whatever they want from it.

I’ve (4 different NHS neurodevelopmental diagnostic process and 2 private experience - not an expert ) had any professional speculate on causes. But none of those were for anyone with any other tangible differences. Maybe it’s different if there are other things in the mix.

Should say never had a professional speculate on causes.

ontetwo3 · 13/06/2023 21:16

My eldest son is autistic, my husband is autistic and it is almost certain that my younger son is also autistic (he is diagnosed with GAD).

Neurodiversity tends to run in both our families, so the autism is probably genetic.

blueshoes · 13/06/2023 21:17

BaseDrops · 13/06/2023 21:11

Should say never had a professional speculate on causes.

It is not speculation at all. It is finding out the scientific evidence-based reasons for autism developing. Unless you are saying we should never investigate the causes at all.

blueshoes · 13/06/2023 21:19

blueshoes · 13/06/2023 21:17

It is not speculation at all. It is finding out the scientific evidence-based reasons for autism developing. Unless you are saying we should never investigate the causes at all.

Perhaps those are the wrong professions for me to name. But I would not go so far as to say that we should never look into the causes of autism.

Bobbybobbins · 13/06/2023 21:20

Two DS with autism, learning disabilities, ADHD, one is non-verbal. No ND on either side of our family. It's very bizarre.

Singleandproud · 13/06/2023 21:29

I have no doubt DDs ASD is genetic my dad, Dbro and several other of my paternal family members would probably fit a diagnosis.

What I do find interesting though is that DDs head developed like a rugby ball (long and thin, not Hey Arnold) in the womb from my 20 week scan and I had extra scans to keep an eye on it until it magicly righted itself at about 38 weeks. New research that came out of Israel in 2021 suggests this pattern of brain development in the second trimester and then disappearing is seen in many children who later go onto be diagnosed with ASD and it could be an early potential biomarkers.

Goldencup · 13/06/2023 21:44

BaseDrops · 13/06/2023 21:11

Should say never had a professional speculate on causes.

The NICE guidance specifies that genetics is mentioned at diagnosis.

blueshoes · 13/06/2023 21:47

My dd 19 was recently diagnosed with autism was born with a congenital heart defect. Apparently there is a strong link between CHD and autism developing. There isn't anyone in our family who is autistic (maybe some traits) nor have a heart defect.

So the fact that both appeared in my dd could just be random genetic throw of the dice. She was deprived of oxygen at birth for about 15 mins leading to a crash section. I sometimes wonder that was a factor but reading this thread, perhaps not.

BaseDrops · 13/06/2023 21:50

blueshoes · 13/06/2023 21:17

It is not speculation at all. It is finding out the scientific evidence-based reasons for autism developing. Unless you are saying we should never investigate the causes at all.

Your post

“What do you think are the factors which gave rise to autism in your family?

Don't know if that is much better

How would proper development paediatricians or psychiatrists (probably getting my professionals wrong) who diagnose autism phrase it? What neutral terms do they use?”

A clinician asking a patient or patients carer what they think are the factors resulting in autism is asking someone to speculate. It’s definitely not gathering scientific evidence based usable data.

I have not expressed an opinion on whether autism “causes” should be investigated. I did state my experiences. If someone is investigating autism and is looking for non-genetic correlation I would want it to be done using appropriate rigorous methodology. Correlation is not causation, shades of Wakefield.

BaseDrops · 13/06/2023 21:51

NICE guidance is not followed in every country in the world, they are specifically for England.

blueshoes · 13/06/2023 21:58

BaseDrops · 13/06/2023 21:50

Your post

“What do you think are the factors which gave rise to autism in your family?

Don't know if that is much better

How would proper development paediatricians or psychiatrists (probably getting my professionals wrong) who diagnose autism phrase it? What neutral terms do they use?”

A clinician asking a patient or patients carer what they think are the factors resulting in autism is asking someone to speculate. It’s definitely not gathering scientific evidence based usable data.

I have not expressed an opinion on whether autism “causes” should be investigated. I did state my experiences. If someone is investigating autism and is looking for non-genetic correlation I would want it to be done using appropriate rigorous methodology. Correlation is not causation, shades of Wakefield.

If someone is investigating autism and is looking for non-genetic correlation I would want it to be done using appropriate rigorous methodology.

Thank you. We can agree on this. Although I am still not sure why we are tiptoeing around the use of the word 'cause' . How can you be so sure autism is not caused by something as opposed to just correlation? Correlation in itself is meaningless until you actually get to a cause and maybe you never do but that still bears investigation.

Just because Andrew Wakefield's approach is deeply flawed does not mean there could not be some other non-genetic cause that we do not know about (but investigated using appropriate rigorous methodolgy of course).

autieawesome · 13/06/2023 22:06

Genetics. I had straightforward easy birth. I started to recognise signs of asd when my son was around 10m

BaseDrops · 13/06/2023 22:16

There is rather a lot of actually scientific research focused on autism. Some of it is even not sponsored by the likes of Autism Speaks whose self stated original was to cure and eradicate autism. I (autistic) Even the most struggle to not hear that as you are a blight on humanity and we don’t want your dodgy genes being reproduced.

Have a look here https://www.spectrumnews.org/conference-news/

“cause” because it amused me to allude to the controversy of caused in your title rather than objecting to the word in that context.

Conferences

https://www.spectrumnews.org/conference-news/

IWillNoLie · 13/06/2023 23:14

Autism is not a single condition anyway - it is more like a common symptom of a range of different syndromes. There have been loads of autism linked genes identified and a lot of the research is pretty much ‘pure’ research - learning how the brain works and develops and how genes impact this. For much of this autism is simply a point of difference to help explore neurodevelopment.

exhaustedlongtime · 13/06/2023 23:37

@Quitelikeit my friends children high functioning. Me and my siblings high functioning. Out of 15 families I know, one family have two non verbal children.

DyslexicPoster · 13/06/2023 23:43

Genetic soup. I'm possibly autistic too. My traits are strong. However we have two borderline ASD kids and two kids I sen school both of whom have an I herited duplication. We are in the dcd study.

There must be genes at play somewhere. Our dna is our building code. No one knows. Right now. But that isn't saying this will always be the case

SummerSun04 · 14/06/2023 00:02

CaramelicedLatte · 13/06/2023 13:36

His diagnostic report. HTH.

In regards to why we now diagnose more, I agree that we are better at recognising ASD, but I disagree hugely that there is less stigma. If anything I think there is now more stigma, with the gammons who assume ASD diagnosis is 'an excuse for bad behaviour/parenting.'

I think changes in education have also had a negative effect: it's much harder for children with ASD to cope in mainstream education than ever before, and those who would previously have masked heavily, or just gone unnoticed due to not causing a fuss in class, can no longer do so in the current environment.

JMO.

When and what is it specifically in mainstream education that you think makes it harder for children, that wasn't an issue before?

Purplepeaches123 · 14/06/2023 00:09

I have three children. Eldest is severely autistic with severe learning disabilities. Ocd was diagnosed at 14 and epilepsy around 14 too. No family history. I had a long traumatic birth with. Low apparently at birth. I actually have my Labour notes which I got going through an education tribunal and it makes difficult reading. He’s an adult now but I still can’t read through all of the notes. I’m not 100% but do wonder about the birth.

Tigofigo · 14/06/2023 00:24

DC2 had a straightforward actually pretty good birth but has an ASD dx, no other signs of ASD anywhere in either family. DH had some sensory issues and is dyslexic which is a type of neurodivergence, but not ASD. No ASD anywhere else in wider family across countless cousins etc.

DC's presentation is low need / more Asperger's end and I'm not actually sure they are autistic. I think maybe sensory processing plus dyslexia plus trauma / anxiety looks like ASD?

Wanderingthoughts · 14/06/2023 09:42

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. Is it just the activation of different genes or an environmental reason that cause the different presentations?

Another thing I find interesting is, anecdotally from these replies and what I've seen from friends and family, it seems the 'higher functioning / Aspergers types' usually have family members who are 'higher functioning autistic' albeit undiagnosed, whereas the more 'severe' presentations of autism seem to blindside people more and they cannot see a family link? (Perhaps there are autistic family members but the presentations are so different it's hard to see the connection?) Interesting.

OP posts:
Tigofigo · 14/06/2023 09:47

I think "severity" is a weird one.

You can be verbal and appear NT on the surface but be really really struggling internally.

Or you could be non verbal, but actually cope well.

Which is the severe one?!

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

Davros · 14/06/2023 09:50

My DS is severely autistic. There is only one other boy on the "suspect" side of the family, all my cousins' other kids are girls. The other boy is also severely autistic. One of the girls in this generation is diagnosed with autism but much higher functioning (if we're allowed to say that). In my own generation, one of my sisters is definitely autistic (Asperger's), as is one of my cousins. Our grandad was extremely "unusual"! There is also lots of dyslexia all over this side of the family. Although people say that dyslexia is not connected, I can't believe that, I see it as a processing issue and distantly related. So I'm saying genetic too

Wenfy · 14/06/2023 09:54

Tigofigo · 14/06/2023 09:47

I think "severity" is a weird one.

You can be verbal and appear NT on the surface but be really really struggling internally.

Or you could be non verbal, but actually cope well.

Which is the severe one?!

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

Do you know anything about autism?

Being non-verbal often means kids can’t communicate at all & can’t cope. My DD was NV for ages and couldn’t communicate what was wrong - I had to often hold her through tantrums to get her to calm down. When she began to talk it changed everything and she began to do things I never expected or imagined.

FastAndLast · 14/06/2023 09:58

Tigofigo · 14/06/2023 09:47

I think "severity" is a weird one.

You can be verbal and appear NT on the surface but be really really struggling internally.

Or you could be non verbal, but actually cope well.

Which is the severe one?!

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

I agree with this. My 8year old was diagnosed at 2.5. He’s never spoken a single word, and is still in pull-ups, attends a special needs school. He’s fine with change of routine (we’ve just moved house and he’s completely fine, he doesn’t mind a change in routine, he’ll eat almost anything…
My cousin’s stepson is verbal and attends a mainstream school but struggles so much more than my son because of his autism.

SouthCountryGirl · 14/06/2023 10:00

Wenfy · 14/06/2023 09:54

Do you know anything about autism?

Being non-verbal often means kids can’t communicate at all & can’t cope. My DD was NV for ages and couldn’t communicate what was wrong - I had to often hold her through tantrums to get her to calm down. When she began to talk it changed everything and she began to do things I never expected or imagined.

Many of us who are verbal do have a lot of problems communicating though. (Even if you ignore my hearing difficulties)

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