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 😢

Its not odd that she wanted those dx—its odd that you keep repeating that as though its inexplicable or a sign of something wrong with her. She’s no fool! She wanted a diagnosis which helped/protected her and she did not want to find herself stuck with a label that would signal her out as defective.

She is quite a practical person. I would approach her that way rather than fixating on how she “wanted” one diagnosis rather than the other. Of course she did! Because she is not stupid.

Just keep acknowledging the pain she feels while encouraging her to recognize the potential benefit of the diagnosis: increased opportunities, more tailored/supportive environments, more signposts for the road ahead.

Sadly I know this all too well from being a teacher.

Can I ask anyone replying to this who may have autism or their child does - is not being able to make a decision something that is a struggle?

This seems to have become more obvious as she’s got older and needs to make decisions alone rather than me making them for her but even things like what she wants to eat ( although she only eats a very limited number of food so perhaps this is why ) or what shop she wants to go into first usually gets a reply of “ I don’t know “

I understand - apologies, it was reading from some posters that she had been forced into an assessment but that wasn’t the case at all but yes she didn’t want the outcome she received and I need to support in the way she wants and if that’s never to mention it again so be it!

Decision making can be very overwhelming, I would try to limit choices where possible so instead of “what do you want for tea?” ask “do you want spaghetti Bolognese or sausage and mash” - it can make it less overwhelming than being faced with a big choice.

She is anxious and struggling to come to terms with life changing news. She wants to know that even if she’s awful you still love her unconditionally. Keep showing her empathy and support. She will come through it.

Anxious, perfectionist, people struggle with decisions not just autistic people. They fear (they overvalue) the risk of s wrong decision. They may also lack the time sense to develop urgency and choice can be related to urgency/scarcity. That is the ability to choose may require fear that choice will be lost through delay.

Can I ask anyone replying to this who may have autism or their child does - is not being able to make a decision something that is a struggle?

I have autism and so does DS, neither of us finds decision-making difficult. DD who has ADHD does though, and the bigger the decision, the more overwhelming she finds it. She is already stressing about picking unis to firm and insure later this year.

Yes, executive function difficulties make decision-making really difficult for me and my eldest. Lots of anxiety about making the wrong choice and overthinking possible consequences etc

My son will say I don’t know to most questions. So I’ll ask the question and then give limited options a or b so that he is less pressured. But he is a total nightmare just now. It’s not his fault but it’s so hard to handle. Doesn’t want to go to school, is boring/pointless/waste of time, which is the theme since he started. Wants to drink gallons of Dr Pepper and go to Lidl 10 times a day. His fixating on things and will not listen to anything/reason. It’s v difficult he also doesn’t accept his diagnoses- asd/adhd and says he’s ‘perfectly normal’ it’s everyone else.

it’s tough op, she loves you but I think testing you to see if you’ll still be there for her. Reassure and be there for her as you are doing I’m sure. It’s hard we fight and fight for diagnosis and support then they don’t engage - my son would get up and leave sessions, not speak, etc he’s similar with asn teacher he is struggling and I don’t know now to help him. It’s quite heartbreaking for a parent to see their child struggle and not know what to say or how to help them.

It is truly heartbreaking - you’re spot on there

That’s so interesting about the Dr Pepper as my DD would drink litres of that and walk about Lidl all day too!!!

I don't understand what assessment she's had.
Was it specifically for ASD?
Did she know it was for ASD?
Why did she think she would get a diagnosis of misophonia?

Who did the assessment?

Sorry for all the questions.

I have an adult son who is autistic so maybe assessments have changed.
He got diagnosed with what was then called Asperger syndrome in the 90's.

There is no formal diagnosis for Misophonia but it can be listed on an ASD assessment whether positive or negative a separate condition, the same aa social anxiety

She knew it was an ASD / ADHD test ( they do them together where we went )

You need to find your own support network. Does NAS have a local group? Especially a group for parents of girls?
You need people who get it and who you can vent to.
Her behaviour sounds normal.
D1 accused me at a similar age of just trying to diagnose her all the time. She know is cross that I didn't get formal diagnosis at the same age (and I knew it would give zero extra support to us at the time).
D2 was diagnosed at 9 and accepting of her diagnosis then at about 13 denied the diagnosis, she is now older and accepting again. (I got her diagnosis in order to prevent het primary school giving het a less helpful label.)

If you're on Facebook I would highly recommend the 'Parents of Autistic Girls' group for support. Even if you just read through some of the posts - it may help you.

Thanks I’ll join that now

Is that the GEMS group please? There seem to be quite a few?

@MessyMum123 @Patriciaspantry it's this one

Thank you! 😁

l