to be so upset by my 13 year old daughter?

[MessyMum123]

Recently diagnosed with ASD after lots of eating issues and misophonia arose ( an intolerance to people making noises - chewing / breathing )

She refused lots of the assessment as refused to answer but between me and school she got her diagnosis which she has completely refused to accept no matter how I word things / spin everything into a positive etc

Shes not taken to saying that because I upset her so much ( by telling her about the autism diagnosis ) she no longer loves me, that love is not unconditional and that I’ll have to earn it back 😢

Did she have any counselling sessions before hearing the diagnosis? Are you planning any after?

Where I live an unrelated condition, Huntington's, requires you to have counselling sessions before even being tested for the disease. If positive, the outcome isn't good, even if symptoms may be decades from appearing.

I feel it's quite similar to your daughter's position. She's been given a diagnosis that will impact her life at a time when she is going through a lot of changes already. I'd feel betrayed as well to be honest and the relationship would likely never recover for me. You've done something she didn't want. She's got an outcome telling her she's not "normal" at an age she's desperate to fit in. Have some empathy for her. Arrange support so she has someone she can talk to about how she is feeling.

@MessyMum123 when I used the word betrayed, I meant that from her perspective. That is how she feels. @SecretSoul has very articulately expanded on that, and though I understand why you felt obliged to persist with the assessment, you cannot move forward in mending the relationship without accepting that this is how she feels.

Now that you've given more detail about how severely her condition impacts her life, I can see why assessment seemed vital. You were between a rock and a hard place. This situation is traumatic for you both. I wish I knew how to help.

The problem is your having to deal with two things at the moment. The situation as you see it and are living and the situation as she sees it and is living. Although on the surface you’re both facing the same in reality it’s very different.

does she have a trusted third party adult she can talk to? Someone who is a step away from the day to day reality? If not I really would suggest pushing for some sort of counselling for her to help her come to terms with things at her own pace.

can you find local parent support groups for you? Somewhere you can talk about things with others who have lived through similar?

the main thing is don’t take things personally. It’s not about you it’s about the situation she has found herself in.

My DD was diagnosed this year out of the absolute blue. Much of the year has been hard and sad and scary, and she's been angry and spent a lot of time on her own; I felt like she needed that to process.

The last few months have been so much better, and my girl is back! What actually helped was not going on about it too much but dropping it into conversations here and there and even making light of it. Like, she said something to a stranger that she didn't realise sounded rude and I said 'well that's because you're a liiiiittttle bit autistic' and now we can use that phrase to unlock some difficult stuff.

Give her time. Getting a lifelong diagnosis at her age must be wild.

I’m really sorry to drip feed but just in response to some of the replies I want to add that whilst I completely understand how she probably feels violated, she wanted the assessment to show “ misophonia “ so that she didn’t have to eat in the same room as people at home or at school and she wanted “ social anxiety “ so that she wasn’t forced to participate in drama classes as she can’t be on stage performing without feeling sick with nerves etc.
She wasn’t forced into an assessment with no say - she just didn’t want it to say she was autistic as she’s currently unable to see that the things she struggles with are linked to ASD - she sees them on their own if that makes sense.

I didn’t get a diagnosis for any other reason that to try and help her get through secondary school - I knew without a diagnosis she would really struggle to have things bent her way ( or at all ) as I am a teacher myself.

I only got my older DD diagnosed with ADHD just before secondary even though it was obvious to us as parents from a really young age, when she started to suffer at school because of a lack of understanding by teachers.

I appreciate all of the comments particularly the mention of me trying to logically fix something as that is 100% my personality and usually it works as she doesn’t want to be in control of things ( can’t decide what to eat for instance even though there are only a few safe foods she will touch ) so I hadn’t considered her feeling a loss of control.

I think I do need to “ make it up to her “ in her own way somehow so she can see I am sorry for upsetting her with the information but that it’s not directly my fault if that makes sense - how I do that is difficult as she’s currently for a upper ear piercing that she won’t be allowed at school to make it up to her!

You have nothing to make up for though. Certainly it would do no harm to have some sort of treat day because it's been a shit time, but I wouldn't go along with the notion that it's your fault and you alone have to assuage her feelings.

And a piercing? 🤣 She's playing you on that one.

You don't need to make it up to her and you don't need to fix it or make it better. In fact there is nothing you can do to fix it or make it better and as a parent that is actually really hard to come to terms with. You need to just be there and let her feel how she's feeling.

I desperately tried to fix things and make things better for my daughter when she got a diagnosis. For example, I let her get a smart phone at 8 (which I had always said I wouldn't do). I was just desperate to make her feel better. She liked the smart phone but it didn't make her feel better about her epilepsy, because having epilepsy is spectacularly shit at times. And by trying to fix it with things, I was saying that what she was feeling could be fixed with material items and then when it wasn't, she felt she was somehow wrong for feeling how she did. Actually it's a storm and you need to ride it out, and be there for her and let her feel all those feelings without trying to fix them or make her feel better.

F

Exactly @LeanIntoChaos

I once read an article that said the first year after a diagnosis is chaos, and after that you all start to settle into things. That's been my experience.

I have probably treated my daughter to a lot of things, but actually that was mostly about time - spending time with her alone, talking about it or talking shit about Harry Styles, it doesn't matter.

Our relationship is better and I can see she feels more settled - I've tried to help her feel that her home and family are her safe spaces in life.

She’s struggling op and she’s 13. Not only is she struggling but she now feels even more different.
You’ve done nothing wrong and in time she will be glad she has a diagnosis.
Just keep being there, being supportive but holding boundaries. Try not to rise to it. Is she now getting support? Is school a struggle atm?

The only way you can ‘make it up to her’ is calmly say you’re sorry it’s upset her so much, you love her and want to help her. You’ll always be there for her even though things are hard. Give her time, give her space. All easier said then done. Just be consistently there.

Ignore the unhelpful comments from posters who have no empathy or understanding of children struggling with ASD or in general.

So difficult for her. She wanted social anxiety and misphonia, and she got autism

A good lesson for the future (we don't always get what we want), but that lesson isn't helpful now

None of this is your fault, but she has to blame someone, and you're easier to take it our on than the doctor/diagnoser

No to piercing 😀

Lots of 'I love you' and 'I'm here for you'

Time will help her get her autistic head around it (processing in her way)

www.autism.org.uk/what-we-do/support-in-the-community/family-support

Have you checked out the Teen Life Programme?

It is a lot to process. She is in denial. And she feels violated.

The only thing you need to do is to show your daughter that you can withstand her rage. That is it. Love her; don't take it personally; but also have clear boundaries about what is acceptable and what is not.

Thank you for all your further replies.
I will check about the above link when home later as currently we are on a shopping trip at her request.

It was £50 to go here and spend OR the earring at the top of her ear so I went for the former

I hate thinking she feels violated as I totally understand why that would feel so awful to her but we did need an explanation for some of the behaviours she had as it was becoming harder and harder for her to be in social situations and I was desperately worried about her transition to secondary school - so much so that I met with the school SENCO before she began who said in no uncertain terms that they couldn’t accommodate any movement in things unless there was a diagnosis and preferably an EHCP.

It was all to help her cope with things I knew she would find hard and to get her out of things I knew she absolutely wouldn’t cope with.

Being a teacher has probably gone against me in this case as I know full well how hard it can be for NT kids never mind those with extra needs so it was important for her to have the support in place.

I keep repeating how much I love her but currently she says “ No you don’t as you told me I am not perfect “

YANBU to be upset 💐

But this diagnosis is often a huge shock for teens especially - it’s often easier for younger children to adjust, and adults who get assessed usually do it because they want an answer. I do autism training for a SEND charity (I’m autistic myself as are my DC) and I hear that teens tend to be upset or angry about their diagnosis more often than younger children.

In the nicest possible way, remember this isn’t about you 💐

However you are bound to have your own feelings about it all too - no feelings are wrong and you need to be kind to yourself, just try and put that aside when letting your DD process her feelings (that’s not meant to sound patronising, sorry if it does)

You didn't tell me her that. And nobody is perfect but everyone is loveable.

The poor kid. And poor you - it's really hard to navigate their emotions. And hard to know what's typical teen stuff and what isn't.

There’s a lot of talk about grief for SEND parents - processing their child’s diagnosis, realising their child won’t have the life they imagined and that they might struggle more etc. But I think teens grieve too, they’re old enough to know how different they are and that’s bloody hard. One day she will be glad she knows - growing up wondering why you are different is traumatic. But at the moment she’s had the rug pulled from under her.

She is not a brat and I think you need to be the bigger person here. Put aside the things she said, yes they were hurtful but she was hurt.

A diagnosis is scary, it's somebody saying you have this and that's never going to change. It's being told you are different, something most teenagers hate. A label can be so confusing, she perhaps might be questioning her future, who she is and from the sounds of it this wasn't her choice and she has been forced into being diagnosed.

The actual diagnosis won't make any difference to her, it doesnt change who she is or who she has always been. It might help her access support, maybe even understand behaviour in the future, but at the minute she isnt receptive to that. I would stop bringing it up until she is ready, you and school now have the information you need. I would just spend some time building her self esteem and confidence.

I hope you and your daughter have some time to repair your relationship. I'm sure she loves you, she's just confused and needs her mum.

You’re right - she feels confused and has been quite tearful today instead of angry.

The shopping trip was a success but lunch wasn’t - we had to leave as the people sat next to us were eating meat and chewing loudly ( according to DD ) so she couldn’t cope with that.
We ended up with her having lunch in the car and me leaving mine.

It’s things like this that made it hard not to tell her 😢

Tell her that's fine and you will love her anyway.

There are a lot of negative associations with autism. I would have rejected the diagnosis that age as I thought it meant learning disability/low intelligence/etc. I got my diagnosis as an adult and even then it took some digesting. It takes time to accept you are different and she's just 13 dealing with this.

Also she's probably got experience of different presentations of autism and she doesn't want to be associated with it. I have two autistic kids, my son is high needs and very challenging, my girl is very different. She says she doesn't want to be autistic because she's not like her brother or the kids at school who are autistic and exibit challenging behaviours. I get where she is coming from. Took her a while to accept she's different amd that autistic isn't lesser and I honestly think if I wasn't autistic myself and clearly capable and not violent/weird/embarrassing she would have rejected the diagnosis. I've had to say well I'm an adult and I've learnt alot I was obviously different as a child but I've got on in life fine; being autistic doesn't mean you can't achieve look what I e managed.

Positive autistic role models will probably help you. Don't make a big thing of it just mention they are autistic and let her see for herself

Massive eye roll. Seriously? A 13 year old gets a life changing diagnosis that is still viewed with a lot of stigma by many and they are a bit pissed off. Manipulative and bratty is the very least I would expect. Fair enough in my mind, but also not easy for family. This too shall pass I hope.

You're one diagnosis ahead of us, and I predict pretty much exactly what you have described when our turn comes. DC(13) is finally approaching top of waiting list for ASD assessment and is desperate not to be autistic ‐so much so that I find myself questioning whether we should go ahead, even after years of waiting to be assessed and literally all the wheels falling off in the last couple of years. For all the reasons stated here, I can't help but to wonder what we would gain by a diagnosis when I know it will crush DC, at least in the short term.

Following with interest.

What are your reasons for needing an assessment?