Was I out of line? Regarding autism

[Wellthatsmetold]

My child has recently been diagnosed with autism, it's pretty obvious that he has inherited it from my partner who doesn't have a formal diagnosis but presents as very clearly on the spectrum.

I received a letter today from the paediatricans confirming his diagnosis in writing along with some information sheets.

On one of these sheets there was a paragraph about how siblings of a child with autism have a 1 in 5 chance of having the same condition.

I took this opportunity to tentatively ask my partner whether he has ever considered that his DD (from a previous) relationship may be on the spectrum and explained the statistics. There was a reason I asked, I have long since noticed she has some traits.

He reacted in quite a hostile way, raising his voice and saying "what do you expect me to do about it, I can't force her mum to have her assessed" then went off on a tangent about how he has few rights, not being the resident parent.

I was taken aback and said "hold on, I'm not saying you need to force anybody to assess her, I'm just asking you if you've ever thought it was a possibility"

Cue more ranting from him.

I wondered whether his anger stemmed from guilt but he ruled that out.

There is now a horrible atmosphere.

Was I out of line here?

I don't have a close relationship with DSD mum, we are polite to one another and exchange pleasantries but don't have the type of relationship where I would feel comfortable going to her to raise concerns about her DD.

She knows she's suffering with anxiety and is trying to support her through that but I'd worry she too would think I'm over stepping the mark if I began suggesting autism.

I may be wrong of course and she could be receptive but I'm reluctant to say anything now not least after DP's reaction.

People who have autism don't always react in the way you might expect. If your husband has autistic traits, it might be that the conversation about his daughter made him angry but for a completely different reason than what you're imagining.

Maybe he felt overwhelmed trying to discuss something so emotive and needed to process his thoughts (which could be why he sent you a text later). Maybe the timing of your discussion wasn't right - he might have been feeling stressed or overstimulated by the environment.

There was absolutely nothing wrong with you bringing the subject up. You were behaving in a way that was 'normal' to you.

To be fair if I take the spotlight off everybody else and look inwards maybe I am struggling with DS diagnosis more than I wanted to face on the surface.

Take time to do this and seek help. Some organisations run parent courses for coming to terms with diagnosis.

I've alot to learn where ASD is concerned and as much as I like to believe I know enough, I clearly don't and would benefit from gaining a deeper understanding esp with regards to how it impacts adults.

You dont need to learn all about ASD you only need to take it step by step with your own family.

Like I say I'm sensitive to him blowing up at me as it's not the first time lately, it's the second time this week and the third over the course of a week and a half. After listening to your POV's I can see why people think this occasion was justified but it doesn't make it any easier to take when it has become a pattern and the other occasions were certainly not deserving of such a response.

Because, just perhaps, your DH is really struggling too and doesnt know how to manage his feelings, same as you.

I won't be mentioning anything about DSD again and have told him as much.

Did you tell him in a, I'm sorry I was insensitive way or I won't mention her as I didnt like your reaction way. There is a difference.

I think I’m a lot like you, @Wellthatsmetold, in the way I handle these types of things - all the best with it all.
@BessieSurtees. Thank you for your post. It has resonantly with me and I found it a very useful read.

*resonated

What traits did you notice in your three year old which prompted you to seek diagnosis? If you don't mind sharing?

The genetic “link” between autistics seems to be massively inflated in most people’s minds.

@5zeds

The genetic “link” between autistics seems to be massively inflated in most people’s minds.

How so, if you dont mind explaining or expanding on your statement?

I don't feel very comfortable with the way you expressed yourself here. "it's pretty obvious that he has inherited it from my partner" and then this focus on his other DD. It sounds as if you might be coping by pushing your own DC's diagnosis away from yourself and focussing on DH and his family instead.

I've never spoken about (or thought about) it as something anybody should be ashamed of.

Just so long as your DC didn't "inherit it" from you or from your family? Children have two parents and many families have traits of autism or other connected MH issues somewhere along the line. Be careful about "playing the expert" with DH and his family as a way to normalise yourself and your side of the family.

You have sorted hinted it’s a trait that came from him. He hasn’t taken it well. I don’t blame him.

@AmaryllisNightAndDay

I don't feel very comfortable with the way you expressed yourself here. "it's pretty obvious that he has inherited it from my partner" and then this focus on his other DD. It sounds as if you might be coping by pushing your own DC's diagnosis away from yourself and focussing on DH and his family instead.

I've never spoken about (or thought about) it as something anybody should be ashamed of.

Just so long as your DC didn't "inherit it" from you or from your family? Children have two parents and many families have traits of autism or other connected MH issues somewhere along the line. Be careful about "playing the expert" with DH and his family as a way to normalise yourself and your side of the family.

I totally agree with this. It may come across to your DP that you are blaming him, whether this is intentional or not.

Very occasionally ASD occurs without a genetic link. (Please hear me out before should using me down!) My DS1 was born extremely prematurely (24 weeks) and of the 8 or 9 extreme prems that we know, only one of them doesn’t have autism. None of them have any family link to autism. The strong connection between ASD and extreme prematurity is becoming recognised, and every one of DS’s medical professionals (of which there are many) agree that his fairly severe ASD is as a direct result to his extreme prematurity. Of course, Dr Mumsnet has told me previously that I’m “talking shit”. Thanks for that, obviously you know far better than DS’s entire medical team.

Anyway, my point is that I’m sure DH and I are both guilty of ‘blaming’ DS’s prematurity for his autism. Neither one of us needs to think “well it can’t be my family, it must be yours” or needs to scrutinise other relatives for “showing the signs”. OP, even though I’m certain this isn’t your intention, your DP could very easily interpret you as “blaming” him for being the “reason” for your DS’s autism and for the possibility that his DD also has it.

*’should using’ = ‘shouting’

The strong connection between ASD and extreme prematurity is becoming recognised, and every one of DS’s medical professionals (of which there are many) agree that his fairly severe ASD is as a direct result to his extreme prematurity. Of course, Dr Mumsnet has told me previously that I’m “talking shit”. Thanks for that, obviously you know far better than DS’s entire medical team.

In our locality one of the first questions the paediatrician asks is about the birth, premature, trauma etc. They certainly consider whether there could be a link with very early babies, research indicates that there is.

It might be nothing more than you've poked that sensitive spot a lot of NR parents have, it must be hard not to be involved and you may have inadvertently highlighted it and caught him by surprise?

@BessieSurtees

5zeds
The genetic “link” between autistics seems to be massively inflated in most people’s minds.

How so, if you dont mind explaining or expanding on your statement?
Because there is nothing clear genetic marker/test for autism. It isn’t clear AT ALL that you inherit it in the way most people seem to assume or that having relatives with so called “traits” is indicative of a shaded gene pool where some get a few quirks and some get the full monty. We simply don’t know yet and it has been studied extensively for years.

As for the sibling statistics my understanding was that if you had an OLDER SIBLING (not half brother/sister) who HAD BEEN DIAGNOSED then there was a o in five chance you would get a diagnosis of asd too. The “why” this is true is not expressed. You might have parents who are more likely to recognise autism and an easier path to dx. Your parents will be older. You might copy behaviour from your home, and your parents might normalise autistic behaviour. You might be exposed to whatever environmental damage triggered the autism in your older sibling. Many of these influences may be immaterial or key, but lots of them don’t apply at all to an older half sibling of a newly diagnosed child.

One in five chance sorry

@flaviaritt I'm sure the OP appreciates your kind remark

Op I am autistic so is my DS. I am late diagnosed at 43. You did the right thing . Unfortunately a lot of undiagnosed autistic fathers are in complete denial about their and their children's autism. There is a lot of ableism and shame attached. It comes up a lot in autism groups both in real life and online. I hope he can sort this out for the sake of both DC. Good luck!

He probably feels guilty. He's bound to feel pretty crap if he thinks he's passed on a condition that will hamper his kids development and lives.

Not for one second did I tell him he needs to frog march her into an assessment I just said it's worth keeping an open mind.

open mind in what sense? He is not a he resident parent and cannot initiate assessments. It obviously not up to him to get her assessed. What do you want him to open minded about? in what sense?

Part of the problem is people equating autism with a condition that will hamper his kids development and lives autistic children develop into autistic adults and lead autistic lives. They are only “hampered” when expected to develop in a nt way into a nt adult and lead nt lives.

@5zeds autism affects different children/people in multiple complex ways - for some their lives will be constrained by these - it was explained to me as blends of features with varying degrees of affect & difficulty & for some people they will always need full time complex support.
As for inheritance - we know in our family that it exists - dd is within the spectrum & has a cousin & the cousins sibling has a child all well within the spectrum. I know there are also twin studies (Psychology)

It's not as simple as he is autistic and therefore your child "inherited" it from him. There are many genes which may predispose someone to being autistic, but having one (or many) won't guarantee them being autistic, and some people are autistic without having any of those genes. It's not like passing on e.g. brown hair to your children.

You (and/or his previous partner) may also have various autism-predisposing genes; often people with autistic traits end up having children together (assortative mating).

YANBU to suggest she might be autistic if you have observed those traits, and HIBU to react angrily.

@mumwon
autism affects different children/people in multiple complex ways - for some their lives will be constrained by these as does race sex or a whole myriad of features we are born with

it was explained to me as blends of features with varying degrees of affect & difficulty & for some people they will always need full time complex support. thank you for trying to explain autism to me. My son is autistic so I have a fairly good idea of what the dx describes. Not everyone who disagrees with you does so from a place of ignorance.

As for inheritance - we know in our family that it exists - dd is within the spectrum & has a cousin & the cousins sibling has a child all well within the spectrum. I know there are also twin studies (Psychology) that may be so though cousins and cousins once removed are not that close genetically. Your own parents, grand parents and siblings are of more significance. There are some genetic markers that are common to a small group of autistics but they also occur in people who don’t meet the criteria for autism. Realistically I think if there was a single genetic grouping or anomaly it would have been found by now.

@5zeds
dd is within spectrum as I mentioned
the person who used that description to me was specialized/working within the ASD community
the twin studies where mentioned in one of the lectures I attended at Uni in a module on ASD - this description was also used by a the NAS officers in one of their conventions - I did a fair amount of volunteering & working with adults within the spectrum.
DD is an mature adult - she has some support but when she was first diagnosed (v late - typical for girls at that time & even now) I was categorically told she would always need a great deal of support - they were wrong - but we researched & yes, privately paid for speech therapy & physio (she had quite severe dyspraxia which affected her in all sorts of ways - quite a common co-morbidity with asd)
Not only is there a deal of discussion/research on the diagnosis of asd but exactly which part of the brain is involved (note this is not dissimilar to the debate on what causes depression) There is certainly debate on whether other conditions (Attwood for one) can be related. I suspect that there is multiple strands of inheritance on the DNA rather than one - their is certainly - now - a discussion on how it affects people based on sex - when we did modules on schizophrenia & bipolar I found it interesting that the DSM criteria stated that women tended to be differently affected & at different ages. Many people are still not being diagnosed & v few adults over the age of 40 ever were or they were misdiagnosed as having other issues - mental health, learning disability ADHD ect - or in the case of dd - epilepsy with all that entails