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.

sorry! one more thing I want to say (this is something I feel so strongly about) - if you can afford it - bypass the NHS - sorry to say - but with this it is a mental health issue so for me we scraped together the money and it was a 3 month wait. The organisation we used really uunderstood female autism

GP first and probably a blood test to rule out hypothyroidism, iron deficiency etc

Regardless of autism or not hours isolated in your bedroom
is not good
my autistic dd, limit is 1 hour a day on phone and then it goes away and never ever after 8 pm

Do the usual look at bedroom and sleep teenagers need lots and calcium, multivitamin, vitamin D supplements etc

one step at a time
Good diet
decent bath
sleep

look at things she is interested in and give a choice
would you like to go to costa for an hour on Saturday at 11 am or swimming - neither is not an option but choices are good.

As an autism parent of a teen I say this kindly but your idea of what is normal and what is life happiness is will not look anything like what an autistic individuals does. You must stop projecting what you think she needs and start listening to her actual needs.

Going to mainstream school as an autistic individual is hideous. It is a massive sensory and social communication overload. Often that is all they can manage in their life. My son goes to an autism school now and it's allowed him to breathe easier at home and is more willing to go out for walks and activities because he's not so burnt out. The environment and support is completely different and he's got something left in the tank now.

The best you should try for is a short walk out the house or watching a TV programme together. A variety of clubs is unrealistic.

...if she is happy, she is happy.

You may be suprised by how fulfiling she finds her life. If her is ND then you have to remember not to hold her to your own life goals. Hers may be very different.

You sound like a lovely, caring parent. As others have said, don't worry too much. Time alone decompressing could be exactly what she needs. Hell, time being sad might be what she needs. Sadness (not misery or depression) is part of being human.

Having said that - I do get your wanting to mark her birthday. As well as classical music and boardgame ideas, might a walk in the country work? I know it's not conventional for a teen, but she's not a conventional teen. Is there a hill you can get to the top of nearby? Sorry if that's a daft idea but as a pretty similar early teen (who then became a happy, well-adjusted late teen with an excellent group of friends) I think I might have liked that.

Our experience of female autism on the NHS is positive, just to counterbalance that.

I also respectfully disagree with the poster who said regardless of autism, hours alone in the bedroom is not good. I wouldn’t be able to function without it.

i second what @exampleeleven said. My DD has just been diagnosed with autism and it takes me all my time to try and remember that the things i think would be good for DD probably wouldnt. Im having to try and react and think in a very different way now. It doesnt come naturally. And DD needs a lot of downtime afterwards whenever ive been able to persuade her to come out with me.

Your poor Daughter. Your treatment of her is shocking!

Could you consider putting some other rules in place around use of her phone? Limit her time on it/ make it a rule to only use outside of her bedroom/ it has to go on charge in your bedroom at 9:30pm. This may help the sleep issues too. Other things you could insist on are her joining you for dinner downstairs every night, her having set chores to do, and her taking an active part in caring for the dog.

Speak to her about why she doesn't want to do clubs. Is she currently happy? If you want to engage mental health support, she'll probably need to do some counselling or something which will involve 'doing something'.
Is there something regular you could do together if she doesn't want to do things on her own? (eg zumba/ yoga class/ swimming every week/ arts and crafts class). Maybe after some time doing a class with you she'd be more open to doing something on her own.
Can you work a bit more structure into her week to try and open her up to trying new things? (eg on Monday she helps you cook dinner of a recipe she has found and chosen on Saturday, on Wednesday you both do a youtube art or painting tutorial together after dinner, on Sunday you have a family board game afternoon with pizza).

Can you just insist she does go to Guides, and take her, for at least a full term ("I've signed you up until the end of this school year, so you'll be going every week. If you decide you don't want to go back in September that's ok, but you'll have to find another club to go to instead").
Obviously I appreciate these will involve lots of effort on your part, and it may be different if she's so unwilling that you'd literally have to drag her.

456pickupsticks unfortunately many/most of your suggestions are going to be at best unhelpful and at worst counter-productive if the OPs daughter is neurodiverse.

@Grimbelina I think it depends. Lots of neurodivergent people do well with structure and schedules, and I know quite a few neurodivergent children who do particularly well with a schedule set within limited choices (eg do you want to do swimming or gymnastics?), rather than total free choice (eg activities do you wanna do?).
OP is under no obligation to take any of my suggestions, but it doesn't sound like OP or their daughter is particularly happy at the moment, so surely some change is worth looking into?

Totally agree @FatGirlSwim
'I do get school is exhausting for her and she needs down time but I don’t think encouraging her to do a few clubs at school is such a bad thing.

It is if she is already at her absolute limit. Forcing it could push her into burnout and destroy her mental health.

what is healthy for her may not be what is healthy for a neurotypical person. Autism is a different way of processing the environment, it’s not worse, or better, just different, and what she needs to be healthy will be different because of her neurology.

she isn’t only interacting with parents though, is she? She is interacting with others 6-7 hours a day, five days a week. That’s a massive amount.

She is more likely to feel there’s ‘something wrong with her’ if she doesn’t realise she may be autistic. She will know she is different, not know why she isn’t enjoying the things you feel she should be enjoying. If she is autistic, that knowledge could help her to understand that there is nothing wrong with who she is.'

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Ditch the phone

I’ve come back to this thread as the past few weeks have been really difficult. DD is getting home from school and spending the rest of the evening in bed. Weekends are the same. She’s barely eating and is sad all
the time. I’ve tried to talk to her but she can’t or won’t talk to me.

I know she is lonely and wants friends. She was on the phone to an old primary school friend last week and sounded happy. It was the first time I’ve heard her laugh in ages. But this friend is at a different school and has loads of new friends & she never wants to meet up with my DD.

There is a new drama club the school have emailed about - external to the school and I asked DD to at least give it a go but of course she won’t consider it.

I think we need professional help. I am dreading the 2 weeks of Easter holidays with DD in bed all day. She still won’t do things like walk the dog with me or her brother.

I have tried to sensitively approach with her that she might be neuro divergent but she shut down. I have asked her if she wants to see a counsellor and she says no as she says no to everything. I have asked her if she feels depressed and would like to see a doctor she says no.

What the hell can I do?

What happens if you remove her phone? Do you check her social media every day?

Id personally suggest saying to her that her phone use could be making her depressed and that you think she would be happier without it for xx amount of hours a day.

I dont think its healthy for then to use phones so much at that age.

hi @Thebadfight did you manage to get her to th GP in the end? A checkup and a blood test to rule out thyroid and vitamin deficiences and then talk about a referral to her again maybe?
I really wouldn't force her to do activities, I know you are worried sick, tell her you are worried about her and love her and want to help her. She is maybe worried about being pushed into potentially scary situations and doesn't want to make a fuss or get a diagnosis. If you manage to get an autism referral, sometimes the wait is not as long as you think, the NHS are paying private diagnosis companies to help get the waiting list down in some areas and you might get lucky this way.

Hope this helps best of luck

sorry just read that she said no again about GP. Maybe you could talk to your GP about your concerns initially without her and see if they come up with a good strategy to assist ?

Hi OP, this sounds really difficult.

What is she doing on the phone? I think this is important. If she's fallen down a rabbit hole of unhelpful YouTube videos that's different to e.g. interacting with people on Roblox. She could be being cyber bullied.

Do you take the phone off her at night?

If she does seem to be playing games etc to self regulated, there's a service called MindJam you could look at.

What school year is she? Is she feeling exam pressure?

Are there other family members she might talk to about her mood? Her brother? A gran or grandad?

This is exactly like my dd age 16. Sje has friends at school, but never ever goes out. When l suggest it she gives me Pikachu shocked face. She tells me she just wants cats and not people. She seems very content.

My ds is autistic and has adhd something I've come to realise is me trying to persuade him to socialise or do something he doesn't want to do is about me thinking he should be doing something not about what he wants at all. So I've stopped doing it surely social occasions should be enjoyed not suffered through.

Using phones is how ASD people self soothe. My dd is on hers a lot. But it keeps her calm.

She also refused to go to the doctors. She has hierarchical communication issues. Phone appts are good as you can put it on speaker phone.

Mine won’t speak to teachers, gps, dentists or any medical person. At 13 she refused point blank. She is better at 16 now, but it’s still a struggle and l have access to her medical records. I ended up paying her to have an assessment as she recused point blank. It was the best thing l ever did. As she got older it’s been more and more helpful as she has school avoidance issues.

@ArseInTheCoOpWindow ive not RTFT but it was my understanding that OPs DD doesnt have a diagnosis.

From what i have read, it sounds like she could be a bit down in the dumps. Removing the phone would be a good idea in this instance.

She sounds exactly ASD to me even without a diagnoses.

Thats why l talked about her as if she needed one. My dd was identical.

Diagnosis