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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Struggling with autistic teen DD

62 replies

87SPD · 20/08/2023 09:29

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.

OP posts:
GreenSalon · 21/08/2023 20:20

lollipoprainbow · 21/08/2023 19:59

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.

Show quote history

I try and focus on the fact that the diagnosis was to help my DC work out why they felt so differently from everyone else and found it hard to fit in especially when we went from cute quirks when they were younger to teen behaviour classified as slightly odd. By others - I still find some of them cute. But that rather than seeking help because there is nothing.
but dear goodness parenting this time round feels relentless and I have two other ND older teens just not with full ASD. Which is why I came on here to empathise with the OP.
As always, ive found some helpful suggestions on this thread - just sorry not to be able to offer my own to you OP other than I’m reading more about radical acceptance and trying to see if that helps the entire household……

Jellycats4life · 21/08/2023 20:29

I try and focus on the fact that the diagnosis was to help my DC work out why they felt so differently from everyone else and found it hard to fit in especially when we went from cute quirks when they were younger to teen behaviour classified as slightly odd

100% this @GreenSalon

People talk about a diagnosis only being valid to access support, especially at school, but in reality the #1 benefit of a diagnosis (for “high functioning” kids at least - btw I’m not really a fan of functioning labels but sometimes you need to clarify) is the self-understanding.

ArseInTheCoOpWindow · 21/08/2023 20:35

Morph22010 · 21/08/2023 16:04

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

Show quote history

I find this appalling. Why is it so different across the country?

My Dd was diagnosed last November at 16. Since then she’s seen a pyschologist who also attended a school meeting. 6 ND workshops with other ND teens, and an autism nurse appointment. She is now about to start 6 special one to one with a pyschologist. All in the 9 months since her diagnosis. They won’t discharge her until she is 18. We can contact them by phone at any time for aam emergency one off appointment and they ALWAYS call back.

This shoukd be available for every MD kid across the country. I’m stunned by the support we’ve been given.

NImumconfused · 21/08/2023 21:02

ArseInTheCoOpWindow · 21/08/2023 20:35

I find this appalling. Why is it so different across the country?

My Dd was diagnosed last November at 16. Since then she’s seen a pyschologist who also attended a school meeting. 6 ND workshops with other ND teens, and an autism nurse appointment. She is now about to start 6 special one to one with a pyschologist. All in the 9 months since her diagnosis. They won’t discharge her until she is 18. We can contact them by phone at any time for aam emergency one off appointment and they ALWAYS call back.

This shoukd be available for every MD kid across the country. I’m stunned by the support we’ve been given.

Show quote history

That's a fantastic level of support, and I really wish it was like that everywhere but it's a rarity! In our area like many others there is very little help post diagnosis. In fact as autism services and CAMHS are completely separate where we are (my DD was seeing both as she also has OCD and PTSD), they told us not to tell CAMHS she'd got an autism diagnosis as they would then put all her issues down to autism and discharge her!

GreenSalon · 21/08/2023 21:02

ArseInTheCoOpWindow · 21/08/2023 20:35

I find this appalling. Why is it so different across the country?

My Dd was diagnosed last November at 16. Since then she’s seen a pyschologist who also attended a school meeting. 6 ND workshops with other ND teens, and an autism nurse appointment. She is now about to start 6 special one to one with a pyschologist. All in the 9 months since her diagnosis. They won’t discharge her until she is 18. We can contact them by phone at any time for aam emergency one off appointment and they ALWAYS call back.

This shoukd be available for every MD kid across the country. I’m stunned by the support we’ve been given.

Show quote history

Wow!

Jellycats4life · 21/08/2023 21:05

I’m also wowed with that. I’ve never heard of post-diagnosis support as good as that anywhere. Here it’s definitely diagnose-then-discharge.

Hairymcclarytoes · 21/08/2023 21:07

Have you tried a social story, they are little stories that help explain what the plans for a day out are, or why we can or can't do things.that way its done though a story rather than what she might see as telling off.
I'm hoping this link will work and explain me better.
https://www.yumpu.com/en/document/read/26486744/what-can-i-lick

I'm at the stage where I think my older teen has asd or adhd but he's in denial and won't let me contact the school or doctor for an assessment or help. What can I do if he doesn't want to know apart from read these threads and put the ideas into place to at least subtly help him (which i can do for home, but he won't get the support he will need at school without being diagnosed)

BadBadDecisions · 21/08/2023 21:09

Wow.

DD took an overdose, got an 'emergency' CAMHS appointment a week later. The woman was awful, so confrontational, and said pretty aggressively when we walked in 'so why'd you try to kill yourself then?'

She then discharged DD because her response, which was to say 'I don't know' and run out of the room crying meant she 'would not engage with the service'.

It was disgusting and if I hadn't been fucking traumatised and devastated myself, I'd have complained loudly. But we had no diagnosis then and were in complete no man's land.

Morph22010 · 21/08/2023 22:09

GreenSalon · 21/08/2023 19:37

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.

Totally agree and to be honest because most people read up on autism so much pre and during the diagnosis process, speak to other parents and are basically living it day in day out you’ll prob find that you already know most the thr stuff they advice on the course, things like make a visual timetable etc. my best sources of advice have always been Facebook groups and also local parents groups where we meet in person, professional help is non existent

Morph22010 · 21/08/2023 22:18

ArseInTheCoOpWindow · 21/08/2023 20:35

I find this appalling. Why is it so different across the country?

My Dd was diagnosed last November at 16. Since then she’s seen a pyschologist who also attended a school meeting. 6 ND workshops with other ND teens, and an autism nurse appointment. She is now about to start 6 special one to one with a pyschologist. All in the 9 months since her diagnosis. They won’t discharge her until she is 18. We can contact them by phone at any time for aam emergency one off appointment and they ALWAYS call back.

This shoukd be available for every MD kid across the country. I’m stunned by the support we’ve been given.

Show quote history

Mine was diagnosed age 6 and we were immediately discharged, in fact we didn’t even have an mdt meeting for the diagnosis the paediatrician just phoned up and informed me of the diagnosis over the phone ( without asking if i was ok to talk first I might add and I was at work). We were having major issues mostly at school but got to the point where he was saying he wanted to die. Gp was nice but at a loss where to refer to. Cahms woukdnt take on as they said said issues related to previously diagnosed autism. Paediatrician wouldn’t take a rereferal as said we should access Austin’s outreach. Autism outreach would only take referrals by schools and autism outreach visits were chargeable to schools and school woukdnt pay as said it was a waste of money and Autism outreach couldn’t tell them anything they didn’t already know. Ehcp needs assessment was turned down as said they required there to be autism outreach input before. Far from diagnosis providing help it was just a case of going round in circles and everyone fobbing off onto someone else. He’s a teenager now and in a special school so we’ve come a long way but it’s been difficult to access

ArseInTheCoOpWindow · 21/08/2023 22:27

Hairymcclarytoes · 21/08/2023 21:07

Have you tried a social story, they are little stories that help explain what the plans for a day out are, or why we can or can't do things.that way its done though a story rather than what she might see as telling off.
I'm hoping this link will work and explain me better.
https://www.yumpu.com/en/document/read/26486744/what-can-i-lick

I'm at the stage where I think my older teen has asd or adhd but he's in denial and won't let me contact the school or doctor for an assessment or help. What can I do if he doesn't want to know apart from read these threads and put the ideas into place to at least subtly help him (which i can do for home, but he won't get the support he will need at school without being diagnosed)

I paid mine £300 quid. She wouldn’t talk to doctors ( situational mutism) so l said I’d talk and offered her the money to go without argument. It was the best money l’ve ever spent.

She was of course charming and delightful in the appointment, Like no other appointment EVER! We still got the diagnosis.

Despwrate situations call for desperate measures.

Radyward · 18/01/2024 21:57

My daughter is 14 , 15 next month..she is definaty high functioning Autism but no diag yet. She is poker faced at home. Very bubbly with her cousins which she loves. No conversation skills at all. Very bright . Is a high achiever . No friends. Is a loner at achool. Spends a lot of time in room.heres the thing
No meltdowns
Very obedient
Happy at family events
Moody
She looks at me like she hates me ( sometimes)
Cant stand the sound of people eating
Has highly sensitive hearing.
Gets excited about Nothing !!
What do you all think 🤔

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