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 😢

Manipulative and bratty? A 13 year old girl struggling to come to terms with being informed of a life long disability and ‘abnormality’ after making it abundantly clear she wanted nothing to do with the diagnostic process?

OP - I think you were in the right as a parent to push for the diagnosis, but stop pushing for her to accept it. You’ve told her, she doesn’t want to hear it. Move on.

ive two with ASD - they like to close their ears to what they don’t want to hear. They take time in private to understand and gain trust. You’ve lost her trust - she’s told you to drop it again and again and you’ve refused.

her communication and understanding will be split. Of course she still loves you. What she’s telling you is that she doesn’t trust you. She doesn’t trust you to let her feel safe. To let her hold only what she can cope with. She doesn’t trust you to drop it when she asks you to, and then when she tells you to.

just ignore asd for now (in front of her) and work on bonding. It will take time.

Very tough thing for her to get her head round, it will have changed her whole perception of herself and her future.

Just keep being solid and reassuring her. It's a slow path to acceptance.

Is your question for me, Messy?
DC sounds very similar to your DD in everything you describe, but the misophonia which at one point ruled so many aspects of our lives gradually subsided and has now become part of a more general picture of sensory overwhelm. DC, who has a cluster of SpLD, has been told by EP and clinical paediatric staff that there is a likelihood there will be a diagnosis of ASD if we go for the assessment; DC isn't having any of it. Having steadfastly pursued assessment for the last few years, I'm now torn.

Hey OP
Happy New Year to you and yours.
I feel for you, I do.
Am also in education, know too much.
Also following with interest.
One of my DC is on the MAAT pathway, the other is undiagnosed.
I spent so long fighting for the former (and we're still God knows how long away from an ADOS) that I missed it in the latter.
Same age as yours. Knows it in herself. Keeps doing quizzes in a bid for it to come out differently. Sensory overload, massive anxiety (refused to go back to shoe shop as the assistant talked to her), socially awkward, shrill loud voice, clumsy, joint hypermobility, hates drama/music/any kind of performance, emotional dysregulation and this last term, school refusal.
Because of the latter I contacted the SENDCO. She hit the roof. She also escalated when I mentioned bullying issues to the Pastoral Support Worker.
I had to ask the school to tread very carefully as if she was directly spoken with, they'd make it worse.
She has made it categorically clear that she does not want to pursue a diagnosis.
She is high achieving (greater depth SATs) so has never had reasonable adjustments made and seems to manage exams.
I have made it categorically clear that she cannot refuse to go to school and expect me to do nothing. I'll lose my job, we'll face Attendance Officer/EWO scrutiny/fines, it's untenable.
Seven random reasons she wouldn't go to school: she had wet hair, she had a temporary fix on her glasses, she was going to be late, she had her period, she had got toothpaste on her blazer, she had P.E., she had drama.
Too tall and too strong to be physically forced to do anything or made to leave the house.
Even with a diagnosis, my own Attendance Officer says they seldom do part-time timetables/compromises on lessons now. Hands are tied when it comes to stats.
Not sure she'll meet the threshold for ASC even though impacts on a daily basis are seen by me. I've told school she doesn't want to pursue a diagnosis but thanks for the various links for anxiety help/mental health (she doesn't want to go to any of the courses or groups either).
I am trying to respect her wishes, that she'll pursue a diagnosis as an adult if she wants to, but that can only go so far if the school refusal continues. If the school realised just how much I have supported them behind the scenes, by walking her through her Sparx, by trying to minimise the drama practical triggers, by driving her to the bloody gates on multiple occasions.
But I haven't been completely open with them about all the issues as she begged me not to.
It sucks. I find myself stuck right now. You are my Ghost of Xmas Future OP.
Fwiw, I think you had no choice in referring.
Do you think the diagnosis will help your DD practically, once they have come to terms with it? Will it help the school understand them more? Is there any breathing space for you/what reasonable adjustments will be made for her?
Wishing you all the best for a hopefully onwards and upwards 2024.
Big hugs to you. I can only empathise Xxx

OP her behaviour sounds like the stages of grief - shock, denial, anger, bargaining, depression, testing, and acceptance.

Again I really suggest a counsellor to help her come to terms with the diagnosis and work through her feelings.

She sounds angry- she didn't want a diagnosis, didn't engage at all in the process and yet you and the school collaborated to get a diagnosis without her consent. Whilst obviously you've done it with only her best interests in mind, she probably sees it as a betrayal when it's not what she wanted.

At 13 most young people want to be just like their peers, they don't want labels that make them feel different.I agree with the pp's, you're her safe person so you'll bear the brunt of those feelings (and hormones!) for now, but try to not take it personally, orc she doesn't mean it, she's just venting.

I had 2 DDs who regularly hated me at 13 just for breathing in their air space!

My 15 yo dd (year 11) has a medical condition. She’s known about it since she was about 7… she actually had it from younger but I thought she’d grown out of it. Her heart stops beating and she has to take all kinds of precautions. Don’t get drunk. Be sick and if no one looks after you, you’re dead. Be incredibly sensible at all times, especially around water, etc. She has hated being different but is slowly accepting the way it is.

This is a really tricky time for your dd. Early teens is a developmental stage, when our children pull away before coming back to us. She is trying to process this whilst simultaneously trying to separate from you and find herself. If it wasn’t the ‘wrong’ diagnosis (as she sees it), it would be something else. Truly, it would.

My dd and I are turning a corner slowly but it will take time between us. She is starting to trust me and believe that I can know things and occasionally what is best lol. She found out this evening that back in October, I had a chat about something with a boy (and his mum) she dated a few months after things finished. I asked them both not to mention anything about dd as it was regarding her medical condition and she was highly sensitive about it at the time - I was tearing my hair out and very emotional because dd wasn’t protecting herself and hiding things from me. Had dd found out in October, she would have gone ballistic, it would have been seen as a massive betrayal. This evening, she was actually fine about it and found the whole thing amusing…

Things are by no means perfect but what a difference a few months make. I spent a lovely evening with dd and her friend, who I get on very well with. Edit - to add, dd and I really have been at loggerheads for the past couple of years a lot of the time as she pushed me away and I pulled her back much more than I would have done were she not a danger to herself due to the diagnosis.

Just hang on in there. You’re in for a bumpy ride by the sound of it. But like everything in life, nothing stays the same.

I came on here to say ,just this .
I'm 50 and was diagnosed 2 months ago.
Because I chose to go for diagnosis, because I was ready to hear why I spent my life struggling when others didn't.
So the diagnosis brought me contentment and peace and understanding to my life... because I was in control the whole time and could of stopped it at any time.

I'm very surprised that camhs diagnosed a teenager who was clearly saying no she didn't want to participate

Can I just clarify it wasn’t that she didn’t want to participate in any assessment - she absolutely did want her struggles recorded so that the school were aware.
The problem is - and I did tell her at the time is that an ASD assessment, whilst listing her difficulties that she very much wanted in black and white ( misophonia and social anxiety ) to excuse her from certain things, she just didn’t want ASD mentioned.
I highly suspected ASD would come back so I gently dropped this in repeatedly throughout but she was adamant that she had no such thing and the test would just clarify the above 2 things and therefore the school could not force her into x,y,z.

A diagnosis is very important for the secondary school she attends - it’s extremely large and the SENCO is brilliant, but expects children to come into secondary with a diagnosis, private or otherwise if adaptations are expected to me made.

We knew this from my older DD’s ( ADHD ) experience.

When we left the restaurant yesterday at lunch time because of the meat eating people and chewing noises and got back to the car she said “ Could you eat with that noise next to us? “ and I said I hadn’t noticed the noise but I am often distracted by what else is going on around me rather than being quiet so maybe that’s why and she causally said “ You likely have ADHD. You’re so disorganised and speak far more than needed “ and we had a little laugh together which is really really unusual for her to find something funny.

Seeing her struggle in so many different ways was my real push for the diagnosis - I knew she would start comparing herself to peers who can meet to wander around town together when she can not just in case someone kidnaps her and they can go on overnight trips with the school whereas she can’t as she can’t share a room with others because of their breathing noises.

We have a day of watching a musical today and a takeaway so hopefully she will enjoy that - small steps :-)

‘

The autism diagnosis process is exhausting and traumatising. She didn’t really want to participate and you all did it anyway. How would you feel if roles were reversed?

In a world where she already likely feels on the fringes, you removed her autonomy regarding diagnosis. I understand as a parent you were doing it in her best interests but she’s a teenager and won’t understand that for a while yet. In her mind you forced her to get something she didn’t want and she left labelled for life with something you’ll see daily on mumsnet alone is hugely stigmatised (despite progress) . Of course reality is she can ignore the label but you kind of have to be led by her from here on in with it. Control is a huge part of autism and she had that taken away. You need to gain her trust again and she needs to feel control. That is what she’s meaning when she talks about gaining her love, she means trust. She needs to feel safe with you again.

let her lead the conversations and listen to how you can gain her trust and respect again.

It is so hard as she did want certain labels - just not the one she got.

It’s very difficult as her way of knowing I love her seems to only be dependant on how much money I spend on her and whilst I would happily go without myself to ensure she has everything she wants, I don’t have an endless income as I can’t work with the amount of time she has off school.

Today is a request to go to the coast for a walk along the beach followed by hot chocolate so off we will go!

Well, that's not too bad for an autistic kid...it could be a lot worse.

Sometimes they can't cope with the big feelings and use really strong words...combined with general teen hormones you could be in for a tricky time. Good luck.

Being diagnosed with autism is pretty shit. Acknowledge her feelings on that. Trying to be positive may be minimising how she feels.

This was after the massive shopping trip yesterday!

I think she’s realising she struggles more than she’s been allowing herself to show as even in the house she struggles with her older sibling talking on the phone in another room and just told me to tell older DD to “ shut up because she’s affecting my disorders “

She needs some time out 100% but I’m worried about her going back to school tomorrow feeling so wobbly

I would avoid eating out. Let her eat separately. Pick up a take away as a treat. When she is less stressed (sadly probably when finished school) she may be able to eat in a noisier restaurant. (Can't distinguish the chewing over the music) but she may not ever like it.

You've got to adjust your thinking...(yes this is v difficult) things that should be a treat/ great for the general population may not be for your family. And it's difficult. (You might not do family meal time)

Get some good noise cancelling headphones. ( Sony are very robust, but sadly I didn't get to.rate the noise cancelling bit as they were borrowed permanently)

My daughter basically didn't attend school from February- August last year (2023 is last year!)

She needed that time. She just did. Without that break I'm not sure she would still be here, she was in a period of massive crisis and was suicidal on multiple occasions.

She's so much better now. She will never love school which is said to me because she's very very intelligent and an amazing writer. But that's gone for now and she's at school basically part time, and seems happy, which is all I need to know right now.

Any adult struggling to the extent your daughter is would get signed off work, I don't think there's much to be gained by forcing it. In our case it could easily have killed her.

Thanks for the further replies
Sadly she won’t wear any noise cancelling headphones / loops as she detests anything at all that makes her seem any different from anyone else - this is her big challenge actually which we are constantly working on.

It’s hard to know why she feels so strongly about this as her sister has always been seen as different due to her ADHD / learning struggles but maybe this has actually made her more against it all as she’s always enjoyed being seen as the well behaved and more intelligent sibling so any sign of imperfection she takes very hard

I agree re the restaurants and usually we never eat out but the shopping centre she wanted to go to was a long distance so she needed lunch but then is upset when she couldn’t cope so this is something to avoid in future

I do worry about her so much at school as I don’t understand how she copes in the chaos of it all and I wouldn’t be surprised if she ends up having to come out - I’ve allowed both children to be homeschooled if they felt that was what they needed but for different reasons they both decided to stay in school

I couldn't answer can't get on board with the idea of homeschool - I don't think she'd do the work and I don't think I'm capable of being a great teacher either. Plus we both need to work financially.

It's bloody hard.

Op! It’s so upsetting but do not take this personally! Step back and breathe.

Listen to the emotion behind the words and not the words themselves.

Your dd is feeling powerless and overwhelmed and is trying to counterbalance this by trying to exert control over you.

Ignore the bad. Notice and encourage the good.

Part of this is ASD and part of this is normal teen angst.

Keep telling her you love her unconditionally and that good parents risk upsetting their dc if it’s important enough. It’s crap parents who pussyfoot around and do nothing. Tell her you love her too much to not get her the help she needs and too bad if she doesn’t love you because you love her all the same! And back again!

This will pass op. Hang in there and distance yourself slightly from the emotional roller coaster. Be calm, steady and believe in yourself and your love for your teenager. Be the steady anchor she needs while she thrashes about and finds her equilibrium. She will come around I promise.

Feeling very emotional reading this response!

I do find it so hard to not be overly emotional with anything I can’t “ fix “ for the kids and my elder one actually loves me to just fix everything I can for her - she would take any label that meant less work for her!

I really appreciated the part about loving her too much to not seek help if and when needed as I’m from a very strict family and seeking help was bringing shame on the family so it’s difficult to know how much of that has affected me feeling such a desire to help the kids to such a degree they don’t always have time to process things maybe.

Taking a ( small ) step back from now on!

I am a teacher but homeschooling my own in lockdown was a completely different ballgame.

Even DD who this thread is about refused to do a lot of the work as it was “ boring “ or she just couldn’t get focused enough whilst at home.

Luckily in a way I guess, DD is exceptionally clever and worries that I wouldn’t educate her to a high enough standard!!

I think its odd the way you keep saying she “wanted” the misephonia and social anxiety diagnoses and didn’t want the ASD diagnosis.

I mean: she actually has misephonia and social anxiety and those are both diagnoses that come with some accommodation s and, compared to ASD, little stigma.

My daughter has a massive phobia for insects, misephonia, and social anxiety. The misephonia makes her miserable and she is very ashamed of it because she dies not like to constrain us or have to eat alone to avoid the pain/stress of the noise.

Your daughter is very young. Try not to take the mean or aggressive things she says to heart, she is figuring it out.

I would settle on a simple set of phrases

”Everyone has problems, and for every problem there is a solution”

”There are no perfect people, my goal is to be good enough.”

I understand it sounds “ odd “ that she wanted certain diagnosis’ and not others but I think she was desperate for a reason to not have to eat amongst other people ( at home or school ) or have to attend out of school clubs secondary school push for etc so those labels gave her a way out if you like - ASD does not - it makes her compare herself to other people she knows with ASD who are boys and their behaviour is very different to hers.

When we had the assessment done, we honestly didn’t know what the outcome would be.

Sadly, there is still stigma with an autism diagnosis. There are still stereotypes . Schools can be bad at stereotyping and roll out one size fits all autistics adaptions. There are three autistic people in our family and we are quite different in our autism presentation.