to feel so overwhelmed with ASD teenage daughter?

[StressedSuzie]

She has just turned 13 and is struggling massively with anxiety.
She refuses to accept any help such as therapy or medication and insists that if everyone just did as she needed then all would be absolutely fine.
Seeing her walk out of school each day, completely drained and almost mute due to being so overwhelmed is so upsetting to see.
What do you do when your children have sky high anxiety but won’t accept any form of help? 😢

Oh god I hope not.

Like @Octavia64 my eldest dropped out of formal schooling when the anxiety was too much, he was only 10 though so a lot younger. He's a boy but like Octavia's experience the anxiety then dropped off and he was able to engage in education and in therapy etc. He has got a place to study his subject at UCL this September having reintegrated at 6th form.

Some of the advice on here is very good but some is terrible. I also have an autistic teen daughter she has engaged better with some therapies, she is also home educated because school made her issues worse. I know this isn't an option for everyone.

Don't push her into anything she can't engage with it will backfire.

If she likes gaming Mindjam might be an option for soft/ gaming based therapy. It's recommended by the NAS.

https://mindjam.org.uk/

I agree. There have been children with similar arrangements in every school I've worked in. As for raised voices, school staff shouldn't be shouting unless they really need to, if someone is behaving in an unsafe way for example. It's not always easy but it's something we should all be striving for.

It's sad that some posters think forcing therapy or medication on an Autistic teenager is acceptable. I once worked with a parent who physically carried their reluctant tween DD into a CAMHS appointment despite her struggling and protesting loudly that she didn't want to be there, they then tried to physically restrain her in a chair to prevent her from leaving. They were genuinely shocked when the therapist said she wasn't prepared to go through with the assessment. I sympathise with parents in this position, but people forget that children have rights too.

I would never force her to attend if she really didn’t want to unless she was a danger to herself of course.

I tread carefully because I need her to feel safe with me, not like I am making all the decisions and she plays no part in it - I had an upbringing like that and it’s damaged my relationship with my mum even to this day.

It’s just so hard as she can’t see what she needs so the natural fixer in me wants to get everything fixed for her 😢

Those are the kind of adjustments that can work but also can creep and creep till they become more than the actual school attendance. The fear of anxiety becomes greater than the fear of the thing itself.
It is also obvious that she's expecting the rest of the family to accommodate her anxiety which can also lead her to become more anxious and creep the changes she wants to be more and more.
So it's rather like the difference between finding noise really uncomfortable and being afraid that people will make noise.
Anyway, the book I recommended explains it better than I can.

Sorry can you repeat the book please

@drspouse yes ! I totally agree. Really important not to feed the anxiety.

It's this

amzn.eu/d/790U5Ef

It is very stressful to see your child struggle. DD(15) is on the waiting list for autism assessment, last year was awful, she was self-harming and so anxious and sad.

Things that worked for us:
Counselling for me - initially some free sessions through my uni (mature student) and when these ran out I found a private counsellor, I appreciate that this has a cost. I found it so useful to be able to talk about my fears and worries with someone removed from the situation.
Art therapy for DD - school set up CBT for her but she just didn't turn up, was very resistant to any idea of talking therapy. After several months I managed to find a local art therapist, I introduced the idea very gradually, gave her opportunity to meet the therapist, reassured her she didn't need to talk. She loves art so this was a major hook for her.
Opportunities for joy - finding things that she really enjoys doing and helping her access them. She is fascinated by animals so this has included going to places like the city farm, my mum bought her a membership to the aquarium. Also found a new music teacher who is able to come to our house and is incredibly patient and has been great for her confidence.

She has all the usual accommodations at school, ear plugs/defenders, pass to leave lessons early, doesn't have to go to assembly etc. These have all made a difference but school is always going to be exhausting for her.

I’ve ordered that book so thank you 😊

Oh come on. How do you even get them in the car? I have a friend whose daughter is like this. Mum is at her wit's end. Daughter won't engage with any sort of help at all.

It's really been a life changer for us. We are going slowly but we have eliminated multiple checks of DS in bed after bedtime, nobody else allowed in the TV room, he's going to the park on his own or with DD, and various other things he couldn't do.

Also have the TShirt.

What worked:

Adjustments at school - hall pass, able to go to student services anytime, able to use phone to message me etc

Decreased timetable - no PE, trips, assemblies here either (though felt this was a bit of a cop out tbh - it’s hard to know what’s what isn’t it - who wants to go to assembly) and staggered drop off and pick ups to miss the crowds (didn’t mind this one, who loves the school run traffic)

Reduced GCSEs she dropped a couple of subjects

For me - stopped discussing it with anyone. My daughter attempted suicide at 13. So my stock answer to anyone who questioned anything was ‘better alive and <insert thing> for me’.

Joined Not Fine in School and Parenting Mental Health and realised despite what I thought I definitely was NOT alone in not just what was happening but how I was feeling - these are amazing support communities

Constant communication with school student services we were very lucky with ours. That woman changed my life and supported us when it was so hard for both of us. Forever grateful.

What didn’t -

CAHMS and therapy paid privately in the end and did over zoom but she wouldn’t engage (like she told me she wouldn’t)

‘Being a parent’ or whatever crap I saw up thread. Forcing and fighting and disciplining doesn’t work it makes things a lot worse.

Comparing us to ‘normal’ families or the old version of us. Accepting where we were and dealing with it day by day. Not looking too far into the future.

I do have a positive outcome story she’s happy and well and studying law and criminology at college where she has 95% attendance and is thriving and looking at Unis. She’s got good friends and keeps her bedroom immaculate and it’s all a distant memory when it felt like it would never change. It also bonded us together very much as we went through it side by side rather than a battle and she knows I’ve got her back no matter what no matter when and I love her anyway regardless of the situations we find ourselves in.

You’re doing a great job and she’ll always remember how you supported her when her life was in chaos

It’s been an emotional start to this morning so massively thankful for the further replies as I feel really down and defeated and currently hiding in the bath where I’ve been for the last hour!

I really need to be able to take a step back without getting into a spiral of worry every time she can’t make a decision - food is a major major worry as she constantly says she’s hungry but never knows what she wants to eat.
Most things on offer are completely refused until a takeaway is mentioned and she will always accept that - I just don’t have the funds to buy takeaways for 2 children every single night of the week 😢

Last night, after eating absolutely nothing all day it got to 11.30pm when she messaged me that she wanted maltesers.

Off I go on the 90 min round trip to 24 hour supermarket but then said this can’t carry on when I returned and spent all night being so upset with myself for blaming her for my tiredness and stress when she can’t help it.

This morning we’ve had a chat about it, I apologised for making her feel like she’s a problem ( that’s how she said I made her feel ) and she was happily showing me her new Taylor Swift album and asked me to take her shopping for a new duvet set ( she has 12 of them - this is another obsession of hers currently ) and then all of a sudden, she calmly says “ Why are you even in my room? I have nothing to say to you - get out “ and slams the door and locks it.

I honestly feel I can’t get anything right and my mental health is shot now 😢

I feel like she is ruling your life at the moment. I understand as my son has autism and he's 15, so I totally get it, but a 90 minute trip for Malteasers is crazy, not to mention the cost of the petrol. Next time just say the shops are shut but you'll put them on the weekly shopping list. It's hard but you need to implement some bounderies. Things like a new duvet cover need to be treated as something special, a reward rather than asking and getting. Same with the take aways. What home made foods will she eat?

Oh my gosh weekly shopping lists are hell on earth!!!
She comes with me every Saturday evening, picks all her safe foods and snacks for the week and then by Monday she hates them all, denies ever liking them
or finds something she no longer likes about them ( I’m not sure how as she’s vegetarian and lives off of beige carbs but apparently they taste different on some days - possibly because she’s eating them continually so her taste buds can no longer taste them? ) and then just refuses to eat anything at all.

There is literally no talking her around - at all.
She will just not eat if I don’t bend and go and get what she wants.

It is the most stressful aspect of her ASD / Anxiety actually as it’s the one thing I feel I can’t “ put my food down on “ in any way as I am aware of the eating disorders that can start like this but also because she is already thin - losing weight would definitely put her in the underweight category 😢

The problem with CBT in general and with autistic people in particular is that it is very easily experiences as personally invalidating (which is a harm) and requires someone to think of part of themselves (how they think) as 'the problem' that needs changing. Lots of autistic people are traumatised by their experiences, including extreme sensory discomfort, and requiring people to see their distress at this discomfort as the thing that needs to change, rather than the sensory environment being adapted, ends up just being another sort of conversion therapy.

*experienced

Neurotypical people expect to remain in their sensory comfort zone most of the time. Why should that be any different for autistic people?

I totally agree with you Buster. Suzie I really feel like you need to push back on your daughter’s demands. She’s Autistic I know but she must be able to see what is a reasonable demand.

If her daughter has demand avoidant features to her autism the professional advice will be to lower demands.

DS psychiatrist’s sessions are via Zoom (mainly for meds prescription )

i can send his details if you want

good luck x

@CasadeCoca agree but this behaviour does not sound demand avoidant. It sounds controlling and unreasonable. I know that there is a fine balance but sometimes it is necessary to push back on some demands to break the cycle. @StressedSuzie what worked for me re meals was getting my son to make the menu for the week on the understanding that we only had a certain budget. We have takeaway once a week only because that’s all we can afford. I had to make everything exactly as he liked which was using packet sauces and stuff - I guess cos it’s always the same. He also insisted on eating separately which was fine. In my head I was thinking - reasonable adjustments not Queen of Sheba demands. Teenagers are unreasonable at the best of times even when they are NT. Honestly dont give her everything she would like because you’ll end up very ill yourself and broke. *speaks from personal experience 😢

@StressedSuzie just wanted to say that you sound like a lovely mum. She is very lucky to have you. Look after yourself. ❤️

@MrsOnslow - controlling behaviour is the CLASSIC expression of demand avoidance, which is usually rooted in anxiety or trauma.