Feeling really desperate about dd - what can I do think she’s autistic

[Thebadfight]

I really need advice as I’m going out of my mind thinking about what if anything I can do for my 13 year old DD. I think she may be autistic. She masked well in primary school but the problems started in secondary.

She flatly refuses to do anything. Her weekends and school holidays revolve around her lying in bed on her phone. She refuses offers to walk the dog with me, go out for lunch, visit family or anything really. I totally get a teen doesn’t want to socialise with her mum but she doesn’t do any clubs or see friends outside of school so I am desperately trying to get her out her bedroom.

She has friends she hangs out with in school but when I ask her about meeting up with them outside of school she just says it would be too “awkward” to ask them. So I think maybe they are just casual school friendships. I spoke to pastoral support at her school and they have loads of lunchtime and after school clubs. DD refuses to go.

I have tried to encourage DD to at least join something. I said she needs a routine so maybe Mon go to the school library after school, Weds do art club, Fri do science club etc Anything to get her involved and meeting new people.

I have spent years trying to get her to do clubs outside of school and most recently Guides. Some friends from her primary were there and they were so pleased to see her. She went twice and refused to go back. I have suggested swimming clubs, gymnastics but she just says no.
The one thing she does is play the violin and I have suggested she gets involved with the schools music community which is large. She says no.

If is her birthday next week and we are in the same position we are in every year where she has no friends to invite and the pressure is on me to come up with something and I am flat out of ideas. People do want to be friends with her, I remember in primary loads of girls trying to talk with her and she would just ignore them.

I am worried this is her life forever. Sitting in her room on the phone going nowhere and doing nothing despite my efforts. The school are going to see a musical in the Easter holidays and of course she is refusing to go.

Should I take her to the doctors, what could they even do? I have thought about taking her for her sleep issues - she doesn’t sleep. When she was a newborn she was awake 20 hours a day and this hasn’t really changed.

I feel full of despair, I just want DD to be happy and I know she isn’t. She once said to me her life is school and nothing else but her refusal to do any clubs is part of the problem!

She gets in from school miserable and unhappy, I try to talk to her but she won’t talk to me. I know school is hard for her, having to interact with so many people, but I just don’t know what else I can do. My DS is 16 and goes to school, sees friends, does clubs, plays sport etc and now I am in this hell with DD who is the complete opposite and I just don’t know what to do.

This could be a good idea, as long as the dd doesn’t struggle with change. She may need her room to stay familiar. But a few things to make her room a nice place to be.

she may make friends online more easily. But honestly I do think you need to step back and let her figure this out. Let go of expectations as to what things should look like.

It’s about supporting her journey, not influencing the outcome and whilst you really clearly want her to be happy, you might need to realise that what makes her happy is not the same as what would make you happy.

A diagnosis obviously won't help with the friends thing but it will help her understand herself and open opportunity doors in the future. I was diagnosed as a child and I recently completed an adult internship that was only for autistic people, opportunities for support at university/college/school etc.
In terms of making friends, does she actually want to? Maybe an out of school club will be a lot less stressful than an in school one, with the opportunity to go a couple of times and no stress or worry if she wants to drop out after just a couple.
For her birthday, as another PP said what about something just low key like a takeaway of her choice and a movie at home?

I definitely wouldn’t go to the gp behind your DD’s back. They’ll rightly want consent to anything from her at that age and want to have a chat to her rather than you.

I would only do that in the most extreme circumstances, where life is at immediate risk. Otherwise it destroys trust between you and your dd. And takes control away from her. You want her to grow into an adult who has confidence in her choices and can advocate for herself.

I'll echo what others have already said. Sometimes what we envisage as a "typical" teenage experience with socialising, lots of friends, always out and about, may not be what your child needs. I have a 15 year DS on the spectrum and he is more than happy to spend his chill time on his own, quietly in his room, often gaming or just watching television.

He goes to a very big, very busy mainstream secondary school. He is holding his own there, but comes home exhausted from the sheer energy it takes for him to focus on his lessons, process the environment and to mask his traits. I kept pushing him into clubs and activities for years, thinking it would somehow fix his mood when, in fact, it had just made him more anxious and unhappy. I let him take the lead now, and he is much happier doing so.

With all due respect @FatGirlSwim if a parent is concerned about their child's welfare, they have every right to approach their GP in the first instance, with or without their child. I'm sure OPs child knows they are concerned about her, and nothing will happen without her consent, but you have to start somewhere.

Once we had a CAMHS appointment organised after our GP visit, we explained to our DD that we were concerned about her being unhappy and just wanted to see what we could do to help. She obviously wasn't keen on having someone discuss things with her that made her feel uncomfortable, but accepted that was part of the process.

I'm not sure what in your description would signal ASD. She sounds more depressed to me but equally quite a lot of teens are happy to sit in bed. School is exhausting and seasonal depression is no joke. Can you get her some Vit D, Iron and Ginseng supplements? They might help. A blood test would be my first port of call to rule out anything.

It doesn't sound like you daughter wants to be doing the extra curricular stuff you are trying to push her to do?? It sounds like something you want for her rather than something she wants for herself. I think if she is happy as she is then I would leave her be and readjust your expectations

MaggieMagpie357 oh of course they do have that right and I have been in the position of needing to do that myself. I’m just questioning here whether it’s the right approach, and I would definitely think that a collaborative approach with consent is best wherever possible.

If she's masking all day at school, then she is likely exhausted after school and doesn't have the energy to talk about her day, or to attend more social activities if she has autism. Instead of pushing that, you could try giving her some time every night when she is allowed to just destress and zone out on her phone, and then approach talking to her later on eg. Over dinner or at weekends when the pressure is off. School may be all that she can manage right now, and school is a lot more difficult for children with social communication difficulties. It's often the same with autistic adults, those who manage to hold a job do so at a personal cost. Masking is very taxing for them, so giving her the freedom to be her unmasked self at home is really important. Talk to her about what she wants to do for her birthday, you might find that she finds the pressure to have a big event really stressful as well, and would actually be happier with something she's chosen that's more low key.

What about something a bit more low key, an afternoon tea and the cinema? Or a day spa for just the two of you and a takeaway in the evening. I agree you feel desperate and panicky but you don’t want her picking up on that because it will confirm her fears that she is ‘wrong’ in some way (even if not ND I think many pre-teens/teens feel like this).

Her birthday might be a great opportunity for you to show you understand her and to get her trust, which you will need if you go on any journey to work out what is going on either depression, ASD whatever.

Is she not telling you what she really wants as she feels she will disappoint you? That is miserable. If she wants a cake leaving outside her bedroom door and some of her favourite foods with a card telling her you love her and she doesn't need to speak to anyone all day that's great, go with it.

Put the musical/cinema/dinner/decorating her room (my DC with ASD would find this very intrusive) etc. to one side. That is all for you not her. It is hard but we have to find a way to love/help/support the children we have, not the ones we want.

You sound like a lovely mum who really wants the best for her kids. I mean this very, very kindly - and totally agree with @FatGirlSwim - "please meet her where she’s at and not where you think she should be."

If she is ND and masking all day at school, a birthday 'treat' to a musical and meal sound like actual hell. The opposite of what I imagine many ND who crave quiet time (in fact, need it, to decompress after school/work). Unless she wants to see a musical/go out for dinner, why on earth suggest/force those?

I get that you want to celebrate her, make a fuss, etc. and that you don't feel she can sit in her room on her birthday. But there's a massive spectrum (no pun intended) between Sitting In A Bedroom and a night out at a musical and in a restaurant.

Agree with others - quiet take away of her choice (or fave meal cooked) and a film at home? Board game with family? Grandparents over for cake?

I think a diagnosis would really help both her - and you- understand who she is, and realise it's not bad. It's just different. And realise how to support her - which probably isn't by trying to make her do multiple activities and 'forced fun' if that really doesn't work for her.

How is she actually doing at school? Is she engaging and learning? You mention violin? Does she enjoy playing that?

She has friends to hang out with in school? Are they kind? Nothing you say suggests any bullying and you have talked to pastoral support which is good.

On sleep what are you doing about that? You say she has never slept well - has it changed or got worse or has she just never slept much? Does she go to sleep late, rise early? Do you keep phones etc out of her room?

How did she handle home learning in the pandemic? Some children thrived when the social pressure of school was removed and some academically able children kept up well a academically but were behind socially when they went back. Finding asking friends out awkward sounds like a lack of confidence - not automatically ASD, plenty of autistic people are very confident but in atypical ways. It could just be a quieter personality taking time to mature.

The birthday party etc are not important unless she wants a party and has no one to invite. Lots of people just don't like fuss. The sleep is a worry IF she is tired in the day time.

Don't compare with your DS. But whether she is autistic or not focus on whether things are actually making her unhappy and need to be addressed. If she is achieving at school, enjoys her music, gets on well with peers and gets enough sleep but needs lots of quiet time to decompress that may just be her and nothing to worry about. One of the wisest things my kids ever said to me when I was fretting about her friends is "I would worry about this less Mum if you weren't worried."

I was like this, and have just been diagnosed at the grand old age of 43 with ASD. Gently, you need to step back, I would have and still would hate the pressure of being expected to do things.

OK I need to step back, Thankyou everyone. I get that I could be making her feel worse although my intentions are good.

She hated Covid and online learning and said she missed school, although it was a small village school and her secondary is huge and is still expanding so obviously more stressful.

She is doing OK in school although she worries about not having people to sit with in some lessons. My DS is at the same school and says he sees her with friends laughing.

I guess I am worrying too much and need to let her be. I have fallen for the social media interpretation of teenage girls all hanging out, having sleepovers etc etc I need to accept this is not the case for all teens and it’s ok. I will ask her one more time what she wants to do for her birthday and not bombard her with ideas.

I fear this may be my daughter in a few years' time. She's just not that interested in socialising with her peers.

Just a thought from my perspective as a music teacher... I have previously set up two of my violin pupils to do duets with each other. Much less intimidating than attending a big group and can be really good fun. No need to 'socialise' as you're busy playing music...

I have very limited experience of ND, so forgive me if I'm out of turn. But she sounds like me as a teenager and I'm not ND, I was just introverted, shy and hated mingling!

@Thebadfight

How about a proper, grown up classical concert for her birthday? Something with a violin solo. Ask her music teacher for ideas.

I'm autistic.

Apart from the lack of friends outside of school, what else makes you think that she is?

Watch the first episode of the Chris Packham programme on autism. There is a lady on their who explains very well what autism is like for her.
I have family (boys) who are ASD and they present very differently. The 2 Chris Packham episodes allowed me to understand them both better.

The classical concert idea is a good one, Thankyou!

You sound like a lovely mum who really wants to help your dd.

This is my dd now she's 10 and was diagnosed with ASD three years ago. All she wants to do is watch her iPad in her pj's, hates schools and has no friends. Trying to get her out at weekends is impossible. Very hard.

Op you need to separate out the diagnosis here - it's really really vital that if your daughter is autistic she gets diagnosed.

This is so she can understand herself - so you can understand her - and so she can get support she needs.

My 8 year old has just been diagnosed and believe me it really does help when you are dealing with your child disengaging/ not responding to offers of friendship - it will help you understand why she is different

Being on her phone all the time is not good for her -and as a parent surely you can restrict that? But that does not mean she will want to come out of her room!

It may be that mainstream school is intensely difficult for her to cope with - step 1 is working out her specific neurodiversity so she no longer has to feel shame at not fitting in.

The first one explains female autism very well

It's so hard OP and I really really feel your sadness at comparing here with other teens - I do that all the time with my own daughter - but now we have the diagnosis I do it much less.

I no longer look at big groups of girls playing football and think why is my child not joining in - I can now explain to other young people that my daughter may not respond to eye contact or invitations but she does like to be asked.

It is so vital to allow that self understanding