Struggling with autistic teen DD

[87SPD]

Hi there,

DD13 was diagnosed with Autism last year after a tremendously difficult start to secondary school. She is so lovely and compliant and has never caused us any issues (apart from worry for her own wellbeing)

Anyway, since we suspected autism our whole approach towards her changed to be more accommodating to her complex needs such as level of volume, being in busy places, clothing she wears, expectations of socialising etc. We can preempt a melt down if she has socialised for a prolong period of time and navigate this really well now. She masks a lot at school and so we want to ensure she doesn’t have to mask at home and that we accept her true self and try our best to understand her.

I have felt on top of it for a long time but as she is getting older and in particular the summer holidays (I wfh full time) I am really struggling to be around her. She is constantly ranting about something but to an extreme level, it could be somebody who annoyed her at the park, another team winning at football, the ref of the football game, strangers, tv, the way her food is presented literally the most trivial things but it’s become unbearable for us to listen to!

She is very clingy with me and doesn’t respect personal boundaries so will follow me into the bathroom, sit extremely close to my face when I am getting ready ranting about my make up or worse messing with it and licking some of it (she has a habit of licking things that she likes such as lip gloss, labels, fabrics etc)

The other day it was really hot, I was going out straight after work to see a friend and my DD was just really in my face having a rant, thinking she is funny getting physically in my way when looking in the mirror etc and as soon as I left the house I just broke down crying. I felt so overwhelmed and frustrated.

Its such a difficult situation because of course I absolutely love every bit of her but I feel my own mental health has deteriorated and I am just a shell of a person because I am so drained from bending and twisting to make life easier for DD that I am too drained to focus on anything else.

My AIBU is I am thinking about introducing some more discipline particularly around personal space, but the problem is she gets so upset if my tone is off or she feels we are accusing her of being at fault for anything. She is a very anxious girl and I know when this lack of personal boundary and ranting intensifies it means she’s extremely stressed in herself.

YABU - she can’t help the way she is and as her mother you need to ensure she is secure and able to express however she needs to in her own home

YANBU - Even though autistic and compliant in most things she still needs discipline because the real world won’t be this accommodating for her

Any advice would be amazing, i am completely burned out and feel at such a loss.

My son has ASD, he’s 16, we’ve had lots of interventions and advice over the years. You’ve already done all the important stuff like acceptance and applying different parenting strategies. Something that sticks in my mind which I use regularly has been quite effective is to calmly say how you feel when they’re doing something they shouldn’t be doing or generally being annoying. E.g can you say something like when you lick my face it makes my make up smeared and then I feel I don’t look too nice? Obviously light hearted and calm, quiet tone of voice. Sometimes they may take a moment to process what you’ve said, sometimes not but maybe worth a try?

right there with you, with two autistic teens, I love them so much but I'm exhausted

I'm not sure "discipline" would be a good approach but boundaries are appropriate. One if the things autistic teens can struggle with is understanding how their needs affects others and whilst no one wants to go back to the bad old days where they were forced/trained to mask, an understanding of others needs is important.

It's OK for you to need space. And no one has the right to endlessly rant to another human being, so maybe searching for additional ways of "getting it all out" would be a good thing. Does she have any creative outlets.

Hello OP and I hope you’re doing ok. This post got me feeling absolutely exhausted so I can only imagine how worn out and worn down you must me. I’m awaiting a diagnosis of Dd the same age but we have already made quite a few decisions on how we will manage things either way.

the first one is we are determined to have the same rules and expectations of her as we do now ( and of our other 3 daughters) we will continue to push her to be her best knowing that sometimes this might cause her upset. What we will do ( and have started doing) is not delivering things or dealing with her behaviours in the same way we have in the past and we do with the others. Because we already know the outcome isn’t the same for her - she isn’t the same!

From what you describe I feel like you might be overcompensating ( and that’s really not a criticism I really do understand why) and now it’s become damaging for others. Especially you.! The personal space thing is a life skill she really needs to learn so that’s the first thing to work on. Physically move her away from you when she is too close, hold her hand and ask her to take 2 steps back everytime, to allow you to do what you need to do.

If you can’t Try everyday , with yourself and your well-being in mind , I am sure things will improve. Take good care of yourself.

My DD doesn't do small talk, she only does deep and meaningful 'conversations' not really conversations as she just tends to talk at me, often at 11pm when I want to go to bed.

Girls with ASD who are compliant tend to love rules and boundaries unlike their PDA counterparts. At the moment she is feeling untethered due to the change in routine from school and that stress is being shown in her behaviour.

Make a new schedule and stick it somewhere she can see make it visual if possible even if she's more than capable of reading. Make her stick to it so for DD she get ups, breakfasts and gets dressed, time to herself to go out with friends or I help her get bits out for painting etc before I start WFH, share lunch together, more time for her to do her own thing, then we often go for a walk where DD is more likely to talk and get out her gripes - she particularly likes nighttime walks. If your DD is clingy with you it would be good for her to see that she has time booked in with you everyday that will give her reassurance, but could cause bigger issues if you break it.

In schools students often use little red, orange, green cards to show how they are feeling, you could make some for yourself and DD to show when are happy to spend time together or if you are feeling red/need alone time when using the bathroom etc. A colour is easier to read than a social situation.

In terms of her ranting at you, get a sand timer, give her 3-5 mi utes to rant and out her system but once the timer is up she needs to move on. The visual timer will help her manage her time. There are also free timers online like countdown clocks that change colour as the time progresses.

You are not alone. DD14 Adhd and ASD it's a massive challenge and I often feel overwhelmed too.

Watching with interest.

My DD was diagnosed recently with ADHD and Autism, and while she doesn't do the 'in your face' thing, I'm finding that I don't know where to turn for advice on the type of parent I should be for her.

My instinct is not to parent her much differently; she still needs boundaries and to be told when she should back off a bit etc (with kindness).

But who knows? She was in a terrible place six months ago, took an overdose etc, and the last thing I want is her back in that place.

My dd is exactly the same and funnily enough, we had family around the other day and she was standing so close to me and putting her hands in my face and hair constantly as I was chatting. I found it really odd behaviour and discussed it with her after (not sure if that will make any difference) so what you described there reminded me of it.

Sorry to say but my dd is a bit older than yours and I can’t say she is any better now she is getting older.

Yes it is exhausting and the summer holidays are hard but when she goes back to school then we have the getting ready, the anxiety, the falling out with people, the uniform, the shoes, the socks, nothing will be right. Huge sympathies!!

Yanbu. I see it as our job to help teen dd with autism manage as she heads out into the world. While we can and should be understanding as to why she behaved is certain ways /finds things harder , I think we also have a responsibility to guide her in terms of acceptable behaviour and how to be around people

(DH, who has autism, agrees)

It was more the “she doesn’t do that at school so she must be able to control” attitude I was referring to. Agree with boundaries but can just say don’t do and leave it at that, need to assist child in finding an alternative that is more acceptable

Morph I knew someone would jump all over me for saying that. I do have children with asd. There are lots of things that they do that I just have to accept. My children are severely affected and also have learning difficulties which means they cannot understand the impact on others either. However this is not the case for all autistic people. It is highly unlikely that a 13 year old in mainstream school behaves in this way with her peers and has only just been diagnosed. Yes she may mask at school. She may chew her sleeves or her pen or whatever. It is likely that she has found her own alternatives if this is a sensory need. Yes the op should offer alternatives and should explain to her dd that the ranting in her personal space and licking her make up is not OK. It is OK to say that certain behaviours are not OK for other members of the family.

My dd is doing my head in today. She’s a bad sleeper, rejects all possible medication for it, then moans constantly about not being able to sleep.

It’s a bloody nightmare😞

I have the same with my eleven year old dd with autism. She can be bloody irritating, I know it's not her fault but life is very hard and stressful. She kicks off at the slightest thing, doesn't sleep etc.

A GP in the first instance perhaps, or whichever professionals are currently involved or have been recently involved with OP's DD's recent diagnosis.

If it’s anything like my area nhs is diagnose and discharge, gp doesn’t have anyone to refer to, they can try cahms but probably won’t meet the criteria and if they do it’ll be a 2 to 3 year wait

I agree that discipline is not the way to go here - that's just going to cause problems further down the line.

One thing you could do is appeal to her empathy - I'm sure you know, but it's a common fallacy that autistic people lack empathy; in fact, we often feel it too much when we spot a condition that warrants it. The problem is, we don't often spot it.

So...relating the things she's doing that upset you to things that she can't handle might help.

For example, the in-your-face ranting - relate that to a combination of any time that you've had to shout at her and the sensory overwhelm that she gets in loud/busy places.

Another one might be her licking your makeup, relating you having to use it to her having sticky hands (that's something I still can't stand, I must wash my hands 20 times a day...), or some other similar sensory experience.

With the food presentation...yeesh, this is sounding so familiar...perhaps get her to arrange the food on her plate, and explain why she's doing it that way? In fact, she can do that every time - it's an easy job, and it'll both make her feel involved and removes a source of stress. If she resists, simply explain that you don't understand the why of it in the same way that she can get confused with <insert social situation here>, but you want to understand more.

As it stands, though, it sounds like you're doing a great job - the things that you're doing for her are things I'm only discovering with my other half now, in my mid 40s. I, along with many other autistic folk, can only wish that I'd had that understanding earlier in my life; far from not preparing her for real life, you're giving her the awareness and tools to be able to deal with the outside world when the time comes for her to be more independent.

On a related “get advice” post, sadly there is nowhere. I realised my own naivety thinking there would be post diagnosis support for my DC. Now dealing with well meaning friends and family who now say on news of diagnosis “now X can get the help they need”. But it’s diagnosis and discharge. DH and I clinging on for a six week parenting course run by Barnardos (south wales) so don’t know if that’s an option for anyone. Other than that, it’s reading forums like these desperate for advice of any kind from other parents with teens with ASD that is my only source of help.

Exactly ! What help? I was given a leaflet after my dd diagnosis. Makes you wonder the point in getting a diagnosis in the first place. Zero help and support available.

There's very little advice.

We sent DD to a private counsellor, and the private clinic runs weekly webinars, but it's all so general and I didn't find it helpful really sadly.

I think the diagnosis was mostly for DD so that she could understand what had gone so wrong so suddenly, and to access medication (privately or we would be waiting until she was 16 and I don't know if she would have survived that long).

Beyond that...

Same situation here. Just so exhausted. Life is so tough for her. She wants a massive group of friends to have a laugh with, but people reject her cause they think she’s a little bit odd. I spend all my time trying to cheer her up, keep her upbeat that it sucks absolutely everything out of me. I’m just so depressed by the situation, but feel that I have to hide everything from her and put on a smile. It’s killing me.

Agreed, I was shocked by this. The long wait for diagnosis and then you're just discharged with a handful of leaflets!

I didn’t vote OP, as a mum of a similar sounding girl of a similar age I really do get it. It’s so fucking hard all the time. I love my children but their needs are intense and often conflicting and I feel like I live the whole of my knife spinning plates and dealing with their sensory, social, anxiety, sleep, food and overwhelm issues. Oh, and demand avoidance.

My brain never rests, I always have something to worry about and I’m constantly having to think for them, right down to making sure they’ve brushed their teeth and had a drink.

Today we visited a zoo. Nearly 12yo DD moaned all day that it was too hot (she has major issues with warm weather) then threw a tantrum when asked to go to the toilet before we set off home. She was in full PDA mode, saying if we made her go to the toilet she’d just stand in the cubicle and flush - we couldn’t make her have a wee.

Some days I feel like leaving the house and crying too!

Same for my dd it's utterly heartbreaking.