Autistic dd getting worse since diagnosis

[Twelveforty]

Hi, I’m wondering what is going on with my DD. She’s 17 and has recently been diagnosed with autism.
since her diagnosis she seems to be far more sensitive to noise, noises which never bothered her before are now making her furious

I kind of feel like she’s holding it over me almost, kind of like “you don’t know because you’re not autistic”.
To be honest she’s getting on my nerves with it. We just went out to eat and she said “make sure you eat quietly” (which I always do as noisy eating is one of her triggers). I told her that it was quite rude to say that and that it had put me off eating and made me self-conscious. She knows it’s rude to say as she sits there fuming when we’re eating with relatives but doesn’t say anything then. She said she didn’t know it was rude “because she’s autistic”.
I feel like she’s almost enjoying it. She likes to use words like “sensory overload” and “hyper-fixation”.

I’m probably being a massive bitch and should let her enjoy the relief of having a diagnosis. I just don’t want her to be using it as an excuse for being rude or making people (me) feel uncomfortable. She seems to think she’s the only person in the family who’s allowed to be angry or irritated by noise etc. I feel like I have to walk on eggshells all the time because she’s autistic.
It was never this bad before she was diagnosed officially.
Do I just need to wind my neck in and let her go with it? Will it settle down once the novelty wears off or is this how she is now that she can allow herself to be autistic?
I guess we’re all adjusting to her diagnosis, I’m just struggling with her seeming to become more and more autistic every day when really nothing’s changed.

It's a huge deal to get a diagnosis, it takes a lot of processing even if it's something you expect and really have known for years and are an adult. I was diagnosed a couple of months ago and I'm still all over the place from it and I'm nearly 40, it must be awful for a 17 year old. I would guess she isn't 'becoming more autistic' at all, just that she is hiding less of her behaviours as she doesn't feel the need to do so anymore, or just because it is overwhelming, and if you are upset it can be harder to mask. A diagnosis can be great, but it is also a medical report from an expert listing all your failings and confirming that you are indeed strange enough to achieve an official label. It's not necessarily a relief. A relief for the parent more than the child maybe as you have probably been arguing with school and GPs etc for years to get to this point. Having said that, there is a community of people online who will encourage her to take the view that the world is completely against people with ASD to the point where its really not worth trying to fit in, get a job or have a relationship with anyone NT etc. So I guess I am saying, yes cut her a lot of slack now, especially if it's a relatively recent diagnosis, but be careful she isn't spiralling towards the extreme views that are out there that could make her very isolated and ultimately put her mental wellbeing at risk.

She's not 'more autistic'. Your DD has always been autistic. What the diagnosis often gives is validation, along with allowing oneself to be who they really are instead of masking to try to fit in and suit everyone else's narrative of who they are.

Your DD has very likely struggled her whole life and post diagnosis is a particularly difficult period.

I recall my post diagnosis comment on getting back into the car to be driven home by DH, which was that I was going to remove my mask and stop pretending to be someone I wasn't. Post diagnosis was quite a turbulent period in our relationship; however, he understood that I was struggling, that I could not change who I was, that I'd spent decades masking and I was exhausted from this. We had some support from an autism charity and also went for relationship counselling with a counsellor who specialises in NT/ND couples.

Your post sounds unkind and intolerant. Please speak with your daughter and see what you can do to help her adjust and what situations cause her additional problems. She lives with you, so compromises have to be made. If she struggles with noise from other people eating, the solution would be that she eats alone, in another room or before/after everyone else has eaten. Your DD has a responsibility to herself to try and manage her hypersensitivity, avoid triggers, and that responsibility includes telling you, in a reasonable way, what causes her stress/anxiety etc, so it's vital that you start communicating effectively.

@Clarice99 @Jenn3112 Thanks for replying, it is really good to hear a different perspective.

My DD’s diagnosis was just a few weeks ago and we initially both felt very relieved. She continues to feel relieved and, to be honest, actually likes it when we talk about her strange obsessions and things. She has an NT boyfriend and has told me she likes it when he thinks she’s quirky. I think diagnoses are quite the fashion at the moment amongst her group of friends (who have potentially gravitated together because of their quirkiness).
I however now feel terrified and gutted that this is going to be something she’ll have to live with forever…will she manage uni? Will she hold down a job etc?
I am aware my post sounded unkind and unsupportive, but believe me I am totally her emotional crutch. I wake up to 5 or 6 texts every morning. Then take the verbal battering of 2 or 3 phone calls on my way to work because she’s not coping and I can’t say anything right…”I can’t cope with going out today” “so have an in day, relax, you can go tomorrow or we can go together at the weekend” “I CAN’T GO AT THE WEEKEND, I HAVE TO GO TODAY” etc etc. I have battled school for reduced timetables, quiet spaces etc. She never eats with the family, always takes her meals upstairs. So I am doing my best to support her and always have done.
I guess the point of my OP is that I feel like every “you don’t know because you’re not autistic” and the general “nobody can possibly feel as bad as me, ever” things feel like a slap in the face.

My DH is now going for a diagnosis too as definitely has autistic traits. I guess living as NT with two who are not is really hard. Their disinterest, lack of affection and inability to see any other view than their own is really difficult to live with.
I know that it’s not about me. I know she has had a lifetime of struggling. I get that, I was there for it all.
I suppose while I could put a lot of her issues down to teenage angst, it felt like there was a light at the end of the tunnel and now that light has been well and truly put out.
If either of you can think of any small things that would have helped you post-diagnosis it would be great to try to see a way through.
Thanks (sorry I sound so self-pitying, it’s hard to hear that your beautiful daughter might not be able to live as normal a life as you’d hoped).

Having read your following post, I think you will benefit from setting some boundaries.

It's fine for your DD to say she can't cope with going out today (or whenever); however, she has to learn to accept that other people have lives/commitments and people (you, family, friends etc) are not there for her sole purpose. Being so demanding, that she's accommodated no matter what, is not going to stand her in good stead for the real world.

I can totally relate to how your DD is. I am like that too; however, I am a much older woman who has not had a life of being pandered to, or even people being kind to me. I had an abusive childhood and beyond, left 'home' (kicked out) at 15 and learnt strong coping strategies very early on that have helped me to accept that it's never going to be 'all about me'. Being in a long-term relationship/marriage (35 years) with a neuro-typical husband, I have had to make compromises and although it does not come naturally for me to show affection, appear interested, make compromises etc, in order to make my relationship work, I have had to put in a lot of work, apply critical thinking and communicate with DH. This will always be work in progress.

I think that your daughter's age has a lot to do with her current behaviour, her lack of self-awareness and her demands of you. Boundary setting and encouraging her to be mindful of her behaviour would be a good starting point. After all, she wouldn't be texting and calling her boss or her friends in the way she does you, demanding XYZ, so she has to accept that you have limitations too.

@Clarice99 Thank you for taking the time to reply (again). It sounds like you’ve had a rough time, I’m sorry for that.

You’re quite right that she’s been demanding and has been pandered to. We’ve all been so mindful of her levels of anxiety and stress levels (she’s had times of self-harming) that we’ve found telling her it’s not always all about her quite difficult.
I think you’re right that gently letting her know that we all have our stuff going on is the way forward. And am so hoping that you’re right about the teenage thing also being a possibility.
Thank you x

I think you need to go and work on how you feel about it. I suggest the Sen chat board for parents of children. You are not sounding sympathetic but acknowledge that you are struggling with the whole thing and that board may be a better place to come to terms with the diagnosis.

In the mean time remember she may be operating at approx two thirds chronological age emotionally IE about age 11.

Also think that she is asking you to please don't do that thing that hurts me. (and yes it does hurt physically when you eat noisily)

And give her a free pass to not eat with the relatives. She is probably sitting there looking cross as it hurts to be subjected to their noise.

Hello @Twelveforty I'm in similar position 17DD with regard to being theemotional crutch and several texts and phonecalls some days, my DD also struggles with maintaining friendships but we encourage her to go to social groups which she enjoys. Also struggle with the "inability to see any other view than their own is really difficult to live with."
I was just wondering how things were for you all now and what things have helped because I know my DD feels like 'we dont get it, though like other poster said perhaps that's part of teenage angst. Any tips or suggestions? Thanks

Hi, we’re actually in a much better place now. My DD dropped out of college and we took all pressure to do anything at all right off her. She learnt to knit and sew and has spent 6 months playing on her PC, occasionally meeting friends, reading etc.
Whether it’s that which has helped or that CAMHS have put her on sertraline for her anxiety is impossible to say. It’s maybe just that we’re 8 months post-diagnosis and she’s got used to the idea.
She now has a part time job, which she’s managing really well, she’s planning to go back to college in September and is far more positive.
She still has meltdowns if noises trigger her or if something is stressing her out but she’s so much more pleasant and thoughtful. She’s helpful, and she tries to go about things in a far more demanding way. I never wake up to texts from her anymore.
It’ll be interesting to see how she manages college. I’m so hopeful it doesn’t set her back.

@Twelveforty Thank you for replying that is encouraging to hear, my DD has just finished first year at college,found it difficult and nearly quit but managed with persuasion from us & tutors as she was doing well to stick it out, but is very unsure whether to continue. It sounds like backing off helped and yes the sertaline, not heard that mentioned on camhs. I'm glad it's worked out well & all the best for the future.

Thanks. We had to get an EHCP for my DD so that she can do her A Levels in her own time. She’s just starting with 1 in September. She will also get support with time management, sensory breaks etc which will hopefully help.

I hope your DD will be okay.

Of course this is never going to go away, but hopefully they’ll both find their ways to manage.
All the best x

Masking is exhausting and demoralising and autistic women are trained to do it from birth to try to fit in. The diagnosis gives us permission to stop masking and exist authentically. The relief is off the scale. It's the psychological equivalent of wearing shoes or a bra that are too small for years and finally being given ones that are the right size and realising that it's neither normal nor necessary to be in pain and trying to bend your toes all the time to relieve the pressure on them.

I hate eating with other people, I don't know where to look and the noise of people chewing makes me feel sick. Diagnosis was when I realised that other people don't experience communal eating like this. It's not that everyone feels this way and just puts up with it in some kind of masochistic group ritual, it's that I experience it differently. Why would I continue to put up with it needlessly after that realisation? To make other people happy at my expense? How selfish are other people for expecting that? If I did something that made other people feel sick and awkward whilst eating, like, I dunno, serving up roast dog, they'd soon say "hell no". I'm allowed to say "hell no" too.

Your daughter is now setting limits to protect herself from sensory overload and other needless suffering. This is healthy. As you are finding, she is figuring out how to engage with the world at a pace she can manage.

The self-harm comes from constantly feeling not-good-enough and broken without even knowing why. It will pass in time as she realises that she is good enough, just different from most other people.