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?

@Givemeabreak88

I'm not convinced that it's always in people's best interests to be diagnosed, if it's mild. She deserves support whether or not she's autistic, and I'd hope that her family, teachers, etc. are providing that. If not, that needs addressing, but a diagnosis isn't necessarily that important.

Yes I 100% agree with this, since my daughters been diagnosed we’ve had no help at all. It’s made little to no difference, there really isn’t that much support out there and I feel alone with it all. My nephews school mentioned they would like to put him forward for an assessment but he does extremely well academically that she didn’t go through with it as she didn’t want to hold him back.

I was diagnosed at 40. I would have given anything to have been diagnosed as a child. Not knowing has had a detrimental impact on my life. Not being diagnosed doesn't make someone not autistic. Being diagnosed gives you a reason for being different and some of the things you struggle with. You know you're different. Not knowing why is a recipe for low self esteem, in my experience anyway.

I’ve think it’s different for different people tbh, after dd was diagnosed I started to believe I have autism, I see a lot of myself as a child in her, I would say I’m pretty certain, however I would never try to get a diagnosis now I just don’t feel the need for one. Not everyone wants or needs a diagnosis, it’s down to the individual and in this case the child’s parents.

It’s interesting that you feel you’ve “taken it in your stride” @Wellthatsmetold many people (actually everyone I’ve ever talked to about it) find the letter incredibly hard however sure they were of what it would say. I think given you’ve upset your dp to this extent it probably has changed your behaviour more than you realise. Give yourselves a bit of time. Dsd doesn’t need a dx any more urgently than she did yesterday, she may not need one at all, and she may not qualify for one EVEN if she displays some autistic traits. Focus on your child and your dp and what they and you need now. It’s a long walk on a different path, you are just starting out.

OP, I think you were perfectly sensible to flag up the information. I’m dismayed at so many people suggesting if autism is mild it doesn’t matter when actually it can still have a huge impact on a child’s life. My ASD son has mild autism but it has a massive impact on him, and us, daily. And assuming school would pick up on a child having autism is crazy. I think you are right to be considering what support might help your DSD through this lense. Good luck with it all.

I agree with @Ruralretreating. Schools aren’t great with this often. My DD is on the milder end and it still has a big impact. Like OP’s DSD it’s anxiety that’s caused the biggest issues (thanks covid for making it a hundred times worse). Because she has access to CAMHS we can get help for this anxiety, while other kids wouldn’t.

Like another poster, I can see some traits in me and don’t see the need for diagnosis, but recognising this has explained why life has been tough and that’s ok, although a shame I had no support or understanding as a kid.

DH almost certainly has ASD and I recognise the reaction as similar to him. He feels criticised because of it, me innocently thinking aloud or wanting to share new information can be seen as attacking. He also doesn’t really think about it much and doesn’t seem upset, possibly burying his head in the sand as it is too upsetting. His parents were totally in denial and tried to find evidence against his diagnosis. The complicating factor here is the sibling is a step child and there’s a whole set of other politics around that issue that people react to.

@Ruralretreating

OP, I think you were perfectly sensible to flag up the information. I’m dismayed at so many people suggesting if autism is mild it doesn’t matter when actually it can still have a huge impact on a child’s life. My ASD son has mild autism but it has a massive impact on him, and us, daily. And assuming school would pick up on a child having autism is crazy. I think you are right to be considering what support might help your DSD through this lense. Good luck with it all.

You think she needed to do this in the exact day that her DH was faced with this news about her son?

It was her timing that was terrible, not necessarily the question itself.

It's difficult to say the timing was off as there is never the 'right' time.

I do agree with others that from what I have seen with DD the traits can be hard to spot especially if close to the person.

My DD was diagnosed at 15 after a particularly bad self harm incident which had seen her hospitalised. She had been masking it and had taken out the change in anxiety which had lead to SH.

With a diagnosis she is able to get the help she needs when she needs it. She is open about it (at least with us).

I think he probably overreacted, but I also think you should stay out of his other child’s medical affairs. It doesn’t sound like she is struggling.

As an autistic parent of an autistic child you sound like you need to step back a bit and give your DH time to process this. He may well feel guilt at the diagnosis, I know I did and still do, even though it isn't logical.

You say you have repeatedly raised traits your DSD may have, and maybe he's struggling with that, but it's between her dad and mum what to do next. Lots of parents choose to do nothing once a child is older. I can't speak for the right or wrong of that as each child is an individual with their own circumstances. But if the parents aren't keen for a diagnosis, they may still give more and better support just because they have awareness of what might be.

I also mean this next comment kindly, although I'm struggling to phrase it well, but please reconsider using phrases like 'positive about autism'. It feels 'wrong' that people need to be positive about me, my child or anyone else with autism. On the day DC was diagnosed, DP made a number of 'positive' comments, it was extremely frustrating and made me upset and angry because it felt like he was denying the difficulties. Even some of what he considered positives I actually feel are negative when you're the one living them. This isn't a criticism, just something you may want to consider.

No, she might be struggling. Of course. But it isn’t the OP’s place to intervene in this unless that becomes a lot more evident.

Thank you all for the replies.

DayB1 I'm so sorry your daughter is struggling at the moment, I really hope things improve for her soon.

A comment DP made last night did stand out to me "if her mother refuses to have her assessed then there's nothing I can do about it"

It makes me wonder whether the topic of ASD has come up before and DSD' mum has not wanted to entertain it. It seems a strange thing to jump to, that she would be adverse to pursuing a dx. Unless he's just projecting.

He has hurt my feelings a little as even if my timing was insensitive or I shouldn't have said anything, there was no need for him to get as animated and rude as he was.

I have looked into rejection sensitive dysphoria and that could go some way to explaining his extreme response, but that makes it no easier to be on the receiving end.

This is the second time he has blown up at me in the past week, my crime the first time was asking about our plans for Christmas.

I also mean this next comment kindly, although I'm struggling to phrase it well, but please reconsider using phrases like 'positive about autism'. It feels 'wrong' that people need to be positive about me, my child or anyone else with autism. On the day DC was diagnosed, DP made a number of 'positive' comments, it was extremely frustrating and made me upset and angry because it felt like he was denying the difficulties. Even some of what he considered positives I actually feel are negative when you're the one living them. This isn't a criticism, just something you may want to consider.

I have taken that on board, I apologise if my wording caused you any offence. To rephrase things, what I meant is that I'm keen to make clear that I don't think autism is something to be ashamed of or feel guilty for. I don't mean to minimise or downplay anyone's struggles.

He's entitled to his opinion. Everyone gets grumpy /stressed/worried. You've said you piece, he's said his. Both of you need time to get your head around you're new future

I have looked into rejection sensitive dysphoria and that could go some way to explaining his extreme response, but that makes it no easier to be on the receiving end.

Do you ever wonder if your DP gets sick of being under your microscope?

Do you recognise that you hurt his feelings?

Do you notice that you've criticised him for not being able to read your mind whilst observing you don't know what's going on in his?

Maybe take a step back from analysing and blaming everyone around you and just deal with your own emotions and behaviour. It does seem a little like you might be focusing on everyone and everything else to avoid dealing with what's going on for you internally. You sound very detached from what's going on.

People don't need you trying to fix them or analyse them or labelling traits/symptoms as potential diagnoses (we can all have some traits/symptoms of plenty of things but that's not how diagnosis for anything works). Children with separated parents can experience anxiety as a consequence of that. They can find comfort from their anxiety in taking control of their environment, repetition and the other examples you listed as possible traits. Those aren't unique to ASD, humans use those behaviours for other reasons too.

You're not his therapist, you are not qualified to diagnose anyone, and you are just as capable of misstepping, misreading and upsetting other people as he is of you. I really don't think you're helping anyone - least of all yourself - by trying to pin some kind of diagnosis on every single thing the people around you do. (Would you like that done to you?)

You've upset him. You're not infallible. It's not ok for you to be upset either.

You use words like inherited, guilt and blame and these are all directed at your DH. Then you reinforce that by asking do you think your DSD has ASD too? He may already feel helpless if he knows his ex won't have his DD assessed.

Considering your DH is on the spectrum you know that is insensitive. This sounds as though you are reinforcing the fact that it is down to him and just incase he's not sure about that you need to remind him that both his children could be on the spectrum, just like him.

Why should he feel guilt? Why do you need to say you dont blame him?

There is a genetic link to ASD, you may inherit the genes but you dont inherit autism.

I dont think his reaction was extreme, considering he is on the spectrum himself and may well process information differently, which is why I'm surprised you needed to research rejection sensitive dysphoria. Do you need to analyse his response?

Im very pro diagnosis however there's a fine line between being aware and projecting. Sometimes it is about timing, sometimes its better left unsaid.

@Wellthatsmetold

I also mean this next comment kindly, although I'm struggling to phrase it well, but please reconsider using phrases like 'positive about autism'. It feels 'wrong' that people need to be positive about me, my child or anyone else with autism. On the day DC was diagnosed, DP made a number of 'positive' comments, it was extremely frustrating and made me upset and angry because it felt like he was denying the difficulties. Even some of what he considered positives I actually feel are negative when you're the one living them. This isn't a criticism, just something you may want to consider.

I have taken that on board, I apologise if my wording caused you any offence. To rephrase things, what I meant is that I'm keen to make clear that I don't think autism is something to be ashamed of or feel guilty for. I don't mean to minimise or downplay anyone's struggles.

Please don't apologise, OP, I'm not offended! I just wanted to put across a different viewpoint which may be a little of how your DH is feeling just now. He may feel very differently from me, of course.

Thank you for considering it, though, poorly worded a it was

OP it's really NOT a strange reaction and it's quite lacking in empathy to view it as such.

People who are upset can act angry.

Not read all replies, this is my response to the OP.

Yanbu and your DH overreacted. However, as he is undiagnosed it is likely that he has grown up considering all his autistic traits as personal failures, to be ashamed of, and having internalised a lot of self-esteem issues from that, sees the autistic traits in his DD as things she needs to overcome and learn to suppress rather than natural consequences of an unchangeable condition. With that kind of complex dynamic, suggestions that his DD may have autism may feel to him like a personal attack.

I have seen this dynamic numerous times within my extended family.

The way I see it your child has recently been diagnosed and now you feel qualified to diagnose others for that yabu .
I have a dc who has severe autism and what you are saying has some truth in it but if you do more research no autistic child is the same . There are many undiagnosed people out there the same but it's different levels .
My other non autistic dc can be socially awkward but she's a teenager so do I think she's autistic no .
I think a lot of people can have some autistic traits but does not mean they are autistic nor does it mean all the siblings are autistic.
I think you should concentrate on your own dc and not try and diagnose others only offer support if someone wants it .

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.

I'm somebody who wants to try and help people so that's what I believed I was doing at the time, I appear to have inadvertently put my foot in it and upset him but it wasn't my intention. With DS at the start of his journey all i wanted was to be listened to and have my concerns be heard. For somebody to acknowledge what I was seeing and to be on my side about it. I understand that isn't necessarily the case for everybody.

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.

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.

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

What is your relationship like with DD's mother? I'm not saying to undermine your DH by going straight to her, but if she's got any concerns about her DD's anxiety and other behaviours, knowing your DS has ASD and that it's genetic and girls present differently- well, that might be the final jigsaw puzzle. It also might be the push for her school not to dismiss it.

My DH refused to believe there was an issue with DS. He (DH) didnt spend much time with other kids and wasn't involved in the day to day grind. CAMHS put him right on our first appointment. However, he hasn't told his family as 'they wouldn't understand' and even this week, at DS's first college parents meeting the teacher was saying how DS was not speaking to or looking at her DH said "he's just very shy" and I had to say "and autistic" because it hadn't occurred to him.

@saraclara yes, I think when you get medical information that potentially affects another child that is a very sensible and natural time to discuss it. Appreciate this is a NT response though and clearly it’s okay for OP’s DH to feel differently.