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.

I think first things first a trip to the GP is in order and potentially a referral to CAMHS to see if depression/anxiety are at play here. A lot of what you describe is normal teenager but it wouldn't hurt to get her a mental health MOT. School may have resources you can tap into also. Good luck.

I think your instincts are very good and you should be investigating ASD etc. However, it can be hard for teens to engage with the assessment process and some have real difficulty processing diagnoses. There are some very good and specialised services for diagnosing girls and women, some NHS and some private so it is worth trying to get a referral to these as girls can present so differently and as you say can be very good at masking. If you can afford it, do go private as the waiting list can be very long, years in some cases. Take a look at the Lorna Wing Centre in London (NHS and private). I also recommend Shropshire Autonomy if they are anywhere near you.

But what good would an assessment do? Even if they did diagnose some form of neuro diversity how will this help DD leave her bedroom and make friends?

My DD was diagnosed with ADHD at 10 then ASD, depression and anxiety aged 13. She was an expert masker until about age 11/12 when she could no longer control her emotions and things spiralled out of control, especially when she was at home in her "safe space."

We went to the GP without her with a long list of concerns and observations, they referred to CAMHS. She's now 16 and although we have the challenge of GCSEs this year, we have an amazingly supportive school and we have put many measures in place to support her.

Although waiting lists are long, they are currently reforming the system so that parents can access help and support without an official diagnosis. Best of luck to you OP, listen to your instincts and be prepared to be your child's number one advocate!

Does she actually want to and need to? Or is it you who wants her to?

If she is autistic she is probably experiencing sensory overload and needing the down time / alone time after a full day in school which is a nightmare if a sensory environment with forced socialising and where she can’t get away from people.

you’re making the assumption that her life would be better if she engaged in more activities / had more social time but this might not be what she needs. She might instead need to learn to manage her sensory needs and work with her brain rather than against it.

I can understand why you would feel sad for your dd if these activities are things that have enhanced your life but for her they may not be.

a diagnosis might help her to understand herself and realise that she is not broken, doesn’t need to be fixed and that it is ok to be her. It might also help you to understand her.

A diagnosis can be helpful in so many ways. If she is ND, she is probably wondering why she's different to her friends, exhausted from constant masking and possibly anxious and/or depressed. When DD was diagnosed things made so much more sense to her and she was able to understand why she was different from her peers.

The goal isn’t to make your dd leave her bedroom and make friends, the goal is to support her to lead a happy life, which may look very different for her than you expect it to.

please try not to make your dd feel bad for being who she is.

I’m autistic and groups, activities are really not a fun or life enhancing experience for me. I have joined things in the past because I felt I should or to please my mum, but I just dread going and can’t wait to come home.

overloading her is likely to cause her to shut down.

she’s probably working really hard to mask in school and cope with the environment, and has nothing left at the end of that. She probably needs to shut herself away to give her brain a break and let herself recover.

if she learns to pace the sensory demands that is likely to improve but that is difficult to do while in school all day. It’s likely to get better after she leaves school when she has more control and can choose a more solitary job, have breaks in the working day to regulate etc.

A diagnosis would enable adjustments to be put in place in school to make it easier for her. Technically a diagnosis isn’t essential for this but it can be hard to prove need without. Teens often don’t want to stand out and don’t want accommodations anyway. But in work when she is older, she might.

What you are asking her to do is mask for longer, and she can’t, imo.

Kindly, and gently, I think that you need to step back, just a little bit. Is she actually unhappy?

I was a bit like this as a teen, I didn't have many friends, or really enjoy any of the clubs that I went to, but my DM went on and on at me to meet up with people, go out and do things, and it just used to really stress me out and upset me.

Perhaps this is just how she is. I agree that a bit of an MOT, a trip to the GP etc would be helpful to rule anything out, but if you're meeting resistance, unless she's genuinely unhappy or looking to change it might be that you just need to leave her be.

I did not realise I could attend a GP appointment for her, but without dd. This may be worth doing. I do not want DD to think there is something “wrong” with her but equally I know she is so so unhappy.

I just feel spending all your time in a bedroom with no interaction with anyone apart from your parents is not healthy. 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.

I think a lot of teens are like this but yes ‘more so those on the spectrum’. My dd is now 19 and was much like your dd, she was never interested in clubs (we tried a few) and wasn’t interested in socialising out of school. It wasn’t really until the last year of 6 form she started to make friends and occasionally meet them outside of school. Dd has a diagnosis of Aspergers (no high functioning autism). She’s now in her first year of uni, still spends a lot of time on her own but she also has friends, most of her friends are also on the spectrum (ASD, ADHD), she hates coming home from uni because it means she can’t be as lazy as she can’t uni, I get annoyed when she stays in her room gaming all day and I do make her do things.

I think sometimes as parents we worry too much, especially when they are not as sociable as we were at that age. Some people are just not that sociable, some kids don’t like going to clubs or hanging out with mates after school which is fine as long as it’s their choice. Making friends can be hard of your on the spectrum but eventually she will find her people as my dd has.

@Thebadfight I understand that it feels wrong that she spends all her time in her bedroom, but forcing her into doing things she doesn't want to do right now will only make things worse. I spent a lot of DDs younger years oblivious to her actual needs which took a very long time to reverse. I'm grateful now that we have all to relationship and we talk a lot more than we ever did. But communication is key here, and she needs to be able to trust that she can open up to you when she's ready.

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.

Could she be being bullied? I don’t think I’m ND, maybe adhd but high functioning, but her behaviour sounds exactly like my own. I was being bullied and after a while, it eroded my confidence, self esteem and just get up and go and I became heavily depressed, could there be something like that going on?

Any ideas how I can handle her birthday? Last year as a family we saw a musical and had a meal. This year I have been asking her what she would like to do, suggesting musicals which she says no to, suggesting days out which she says no to. I can’t have her in her bedroom under the covers all day on her phone for her birthday, I really can’t. Appreciate it sounds like it’s all me me me but I just want her to be happy.

I don’t think she’s being bullied, I ask her about this and hope she would come to me if she was but then how would I know if she doesn’t tell me?

@Thebadfight it's her birthday, her choice surely? Even if it doesn't meet with your expectations.

Why not suggest a takeaway and movie night, or something else at home? She should be able to enjoy her birthday in whatever way she chooses.

My DD was diagnosed at 13 after it became obvious in year 7. In some ways she is very immature and others like a 40 year old!
The diagnosis has helped her understand herself and be able to understand that the playing on her phone is downtime and she needs that to function.
Have you asked your daughter why she is on her phone (non judgemental just curious). DD started drawing more when she started conciously looking for activities that made her feel calm.
I have stepped back on asking anything when she comes home from school and just letting her decompress which has helped a lot.

A diagnosis might help her to understand herself and realise that she is not broken, doesn’t need to be fixed and that it is ok to be her. It might also help you to understand her.

So much good advice above. A diagnosis is incredibly important in my experience (from the children and adults I know who received a late diagnosis) in understanding why they are the way they are, pacing, how to work to their strengths, understand what 'masking' is etc. etc. and of course for adjustments in educational and work settings (these are harder to get without diagnosis).

Your own awareness and understanding that your daughter's life might look nothing like another child's or your own is hugely important too.

Reducing the demands on her is more likely to enable her to feel interested in life again and to do things because they benefit her.

you clearly just want the best for your dd and want to help her. that’s really clear from your posts.

the thing is that an autistic brain doesn’t filter sensory input like a neurotypical brain does. All the sensory input, both from the environment in school and the feeling she is experiencing around it, will be flooding her brain all at once and she isn’t able to switch that off. So all the sounds and sights in the environment, the processing of conversations, etc will be really hard work. In order to process it and cope she will then need down time.

when the brain is overloaded like this, it shuts down and switches off the higher order cognitions like language processing and reasoning. She will be unable to learn or make friends or manage her own emotions once overwhelmed like this. Pushing it harder could leave her completely unable to function and make things worse, not better.

It might help to see the time in her bedroom not as wasted time, but as time that is allowing her to continue the social interaction she is having?

I was deeply ashamed about being bullied, i think there’s a bit of social stigma about being a tell tale and a snitch so I think it’s hard as socially we just want to fit in and that’s a sure fire way to make sure that group doesn’t like you. My school was hopeless at resolving bullying as well so it was a bit of a waste of time to say.

another reason I never said was that my mother used to tell her friends about it and sort of make fun of me, tell me to get a thick skin or to hit them, and it all felt trivialising so I didn’t bother. I’m not saying that’s you, but just in my case

I mean this kindly but how much of this stems from you wanting to be seen to being a good mum and how much stems from you listening to the silence and what your daughter isn't telling you?

If she doesn't want to leave her room why not work together to make it a really lovely space for her to spend time, kit it out with things SHE is interested in and be ready to support her explore the world on her terms. It's scary being a teenager when you're not as mature as your peers but you need to respect you're bringing a child up to be a fully functioning independent adult on their terms and not a pet.

Could a room revamp be her birthday present and treat? Go all out.

I can’t have her in her bedroom under the covers all day on her phone for her birthday, I really can’t. Appreciate it sounds like it’s all me me me but I just want her to be happy.

The thing is, what if being in her bedroom is what will make her happy? Why can’t she choose how she spends her own birthday?

Actually, this year on my birthday I was told that I was having a tea party when what I really wanted was to be left alone and have quiet. I spent it looking forward to the next day when I could do what I wanted!

A musical and a meal out are very overwhelming from a sensory perspective. So many things going on there and decisions to be made. Your dd might prefer to be at home with some of her favourite things. She may want to do a quiet activity. She may want to go for a nice walk. But please meet her where she’s at and not where you think she should be. If she is less overwhelmed, she will then be able to think of things she wants to do, and will do more.

@Ridikulus I love this idea!

Come on now. Have you read up on asd at all? Or even the differences between extroversion and introversion when it comes to natural personality differences?

Please stop pressuring her about her birthday. You should not be forcing her to "perform" for you. Can you see it from her perspective at all?

My mum did this to me all my life and never accepted that actually staying at home reading a book, playing the piano and cuddling my cat was a dream day for me. She always wanted me to go out, fancy dinner, friends of the family, doing a sad head tilt or even crying at me when I tried to say I just wanted to chill at home.

It's taken me decades to learn to love myself, don't do this to your DD.