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?

•SIDES not sized ... 🙄

Genetic, 99% sure

This is the nicest thread I’ve seen on here about autism. Lovely that people are asking questions and listening to other posters. There’s a lot of interesting insights. I hope that doesn’t sound condescending (I’m not an expert).

The 'in common' will be found in the diagnostic criteria. The spectrum shows how autism affects the individual. It's not particularly abnormal for people to vary despite sharing a 'condition' - so DH has osteoarthritis, how it affects him varies from how it affects the next person. People with diabetes have different experiences of how it affects them. Not every broken leg is the same. The key thing is that care providers etc treat people as individuals and look beyond any specific category they may be put in.

There is no way my DD who would have been classed as high functioning when diagnosed would fit that description now.

It’s just the genes that the person happens to have inherited
once one person in the family gets diagnosed it’s easy to see traits in other people.

i say that as the parent of an adhd child and an aunt of a severely autistic nephew

It's like apples and oranges so why are they all lumped under the autism umbrella?

It's not 'like apples and oranges' though. The ADOS is a test that can show up autism in a 6 year old and in an adult (as I was when diagnosed).

To give just one example, I was given a children's book with only pictures in it (to me the pictures were hard to understand). I was asked to construct a narrative for this book, which I found impossible to do. I was asked about what emotion one character was displaying, which I got wrong. So, even though I can understand adult narratives, when I have to make up one of my own I simply can't do it. This feeds into the imagination impairment criteria.

I don't have a learning difficulty and have a higher than average IQ but I wouldn't call myself high functioning because my lack of imagination is very disabling in various ways.

@Lemieux3 To be fair to @Ws2210 though, because of the wide criteria and spectrum of traits/deficits, two people can take the ADOS test, get what could be considered vastly different results, and both be diagnosed as Autistic. My son did exceptionally well in all of the imagination elements and also recognised the emotions from pictures age appropriately.

The ADOS test is also only suitable for an individual who is - for lack of better descriptors - 'High Functioning' and verbal - there is no way that it would be suitable for either of my friends DC, they don't have the capacity, verbalisation or understanding. They were diagnosed through observation.

Clearly, but I'm just giving one example to illustrate one thing.

I don't think being verbal makes you high functioning. Not at all. If you struggle with daily tasks as I do, you are not high functioning.

@Lemieux3 I do understand, and I only used high functioning because of a lack of other descriptors. Maybe 'the ADOS test is only suitable for autistic individuals who have a capacity to understand it' works better?

A diagnosis of autism - in my understanding - means a deficit in social communication and the 'triad of impairments'. That can still vary hugely. In my DS's case, he doesn't have any repetitive behaviours or restricted interests, so instead he was diagnosed on the criteria of having sensory differences (which actually disappear completely on his ADHD medication). One of my friends DC has an intense repetitive interest in the washing machine, they sit and watch it spin from morning to night. So in that very specific case of two children who received the same diagnosis, I don't think the phrase 'apples and oranges' is too far off.

I would disagree, as an autistic person with many differing autistic people in my family. This is a learning curve that I've been on for 20+ years. After a lifetime of problems that I didn't understand.

And what I've come to understand above all is that the apple and oranges point of view leads to ableism.

I don't feel that anyone should talk over an autistic person about their experience of these things.

In our case it was heredity. I always knew their dad was ‘quirky’ but it didn’t really present until we were out socially (didn’t happen often), he really has no interpersonal skills. However it wasn’t until our eldest started presenting traits that I realised he was his dads personality twin. Having kids means that masking becomes very difficult, a lot more traits in him became obvious such as sensory and echolalia (dad speaks in tv quotes when becoming uncomfortable with conversation). It got to the point where I was wondering how on Earth his parents hadn’t recognised it when he was a child (especially teen, the stories he told me about secondary screams ASD traits). Of course, a further deep dive made me realise he inherited it from them. They’re in total denial, say things such as ‘oh but doing x, y and z is totally ‘normal’ behaviour, we’re just more advanced than our peers’. Mmm, no.

But we don't need to break those things down. I don't think anyone needs a diagnosis so specific that it takes in individual behaviour, not least because they vary over time anyway.

Nobody other than the people involved in an autistic persons life and care giving need to know the specifics of their behaviour.

Apples and oranges may be different, but they are both different types of fruit.

@Lemieux3 I am not autistic. I cannot talk as an autistic person and I don't want to talk over anyone who shares their experiences as an autistic person.

With the deficits and triad of impairments ranging so widely, I do think different autistic individuals can have different self-perceptions. I say that because my DS - his own words - sees 'nothing in common' with my friends DC, for instance. That's not because he has internalised ableism, but because their impairments, needs and abilities are so different, that he doesn't see himself as similar. He may change his mind with age. Equally, I've read a lot of books and forums about the experiences of autistic people, and their experiences vary hugely too. There are some that see their autism as completely disabling and that every day is a struggle; others who see it at as an advantage because it has allowed them to hyper focus and excel in a very specific career.

I don't think he is supposed to see himself as similar to other people , he is an individual who has differences form others in the same way NT people do. Its not a game of autism snap.

@flagpie I'm not suggesting breaking things down, I'm not sure what the solution is, but as it stands autism does cover a huge range. I have found that this does make it difficult to communicate needs to professionals, such as the case with my DS, as one of two things happen:

• The professional makes an assumption about what DS must find difficult because there are specific traits and impairments associated with autism, this leads to unhelpful and wrong interventions that are completely unsuitable.
• We end up having lengthly conversations and meetings about exactly what DS's autism means for him and how best to support him.

In our case, actually the diagnosis of autism isn't all too helpful, as I just end up describing specific traits, difficulties and support needs anyway.

But you do need to have those discussions, there is never going to be a way to skip that over. What if you break the diagnosis into several subsets all that would happen if people would be misplaced and not get the care they need or you still have to go over the finer details individually anyway.

@flagpie Yes, I agree, that's why I said I'm not suggesting breaking things down as you are correct; several subsets are difficult and can lead to people being misplaced.

What I am saying is - with a diagnosis that is as broad and covers such a huge spectrum as autism - saying 'DS is autistic', is in most circumstances, unhelpful and we need to have lengthly discussions anyway. So it begs the question; why have the autism diagnosis in his specific case? He could just be described as having 'x' trait and 'x' difficulty. It would stop people from making assumptions that he must struggle in lots of ways that he doesn't. I can see how it would be helpful in some cases, but not all.

That's not me having ableism or not wanting to describe my DS as autistic, I want him to get the correct support that is most helpful to him, but what I have found is that having the diagnosis can be problematic at times. Every school meeting we have, the school has attributed certain behaviours to autism (because of stereotypes) whether DS exhibits them or not. It's very frustrating. Although I recognise that this is perhaps an issue with his school, and perhaps may not happen in another placement.

That's simply not true.

There is a great deal of research now that shows that environmental factors are a cause. The world's leading expert is also of this view.

Autism is absolutely not just down to genetics.

@Willyoujustbequiet That's interesting, have you got a link to the research or more information?

Yes I agree the autism stereotype is v unhelpful. Especially in the school context when they think oh such and such can’t have autism no way blah blah

what is also appalling is that laws were created in order to place legal duties in authorities to support children educationally and yet the authorities constantly fight and spend millions on lawyers to avoid putting in support

@Wanderingthoughts

There are so many influencing factors and an abundance of growing evidence that its difficult to pick just one but if Simon Baren Cohen is on record as stating it then that's good enough for me.

I think part of the difficulty is that the acknowledgment of the role played by environmental factors opens up an enormous can of worms for our society as a whole. Say for example if it's proven that exposure to air pollutants during pregnancy then can cause ASD then that has a bearing on government policy/planning/transport not to mention legal claims. And that's just one potential factor.

Sometimes it's easier to dismiss something as purely a genetic lottery than deal with the knowledge that the risk potentially could have been reduced/prevented and perhaps even our own choices potentially played a role. Its an ethical minefield.

https://www.hsph.harvard.edu/news/hsph-in-the-news/air-pollution-linked-with-increased-risk-of-autism-in-children/

I agree it's genetics, but other things are associated with an increased risk. Such as HG, pre-eclampsia and being induced. I had pre-eclampsia and was induced, and arguably had HG (if at the 'lesser' end of the scale, so didn't need to be hospitalised.)

I do see traits in certain family members, and DH and I didn't pick up on some things because they're things we do. (Disclaimer - still waiting for DS to be assessed but everyone involved thinks it's definitely ASD.)

My daughter has a diagnosis, scored a moderate score on the ADOS and has some high end behavioural issues at home after masking so much in school and her teacher refuses to work with us saying that she "doesn't seem autistic" to her 😩 even DWP were more supportive when we were on the phone about a DLA claim.

Genetics.

My dad's side of the family run on the nerdy side, and that has tipped into high functioning Autism at least once every generation.
My grandfather was an incredibly clever man, had a doctorate in Physics and then trained as a medical doctor, ending his career as a cancer consultant in a top London teaching hospital. But he was obviously and very clearly Autistic.

My dad passed in 2017, but the more I've reflected on his life since then, I think he probably was Autistic as well.

And my older sister is Autistic. Very intelligent, has obsessive interests, but has always really struggled socially.

I also suspect a cousin from my dad's side, but can't quite pin down what it is about him.