13 year old daughter suffering bad

[layhazsoph]

I just wondered if there is anyone out there in a similar situation to myself and my family

Our 13 year old daughter has has anxiety since she was in year 3 in primary school and since she started secondary in year 7 her mental health has drastically declined

She has probably been to school for 5 weeks in total in this whole academic year.

She has no friends, doesn't leave the house, has developed ocd and displays sensory issues and cannot bare to eat with us due to the sound of food being chewed and is very sensitive to the smell of other peoples food. She has covered her window and curtains with a blanket to stop any light getting through. She will not leave her room other than to get food and take it upstairs, and I have just discovered she has been sitting in her wardrobe with pillows because it is too noisy for her else where.

Does this sound like autism? Has anyone experienced anything similar? If so where are you and your child at now?

We have an appointment with camhs soon

I want to offer you a hug and a handhold, because I know how incredibly tough this is. Also - whether this is autism or not, don't blame yourself for not being able to fix it. As parents we try our utmost, but most of us aren't MH or neurodiversity experts, and it's not your fault that we there is such inadequate provision for struggling kids.

With the usual caveats about not taking online advice as gospel - it sounds very much like the autistic burnout my son went through in his mid teens. He masked all day every day all the way through primary school and the stress and anxiety built up, then in secondary school he was bullied and ostracised. The gap between him and his peers widened, masking wasn't possible any more because of the massive sensory nightmare that school was for him - the noise, the light, the bullying, the corridors, toilets and changing rooms were awful for him, he had a whole new range of teachers who weren't all understanding of autism and the school had a very rigid behaviour policy which made no sense to him. He was terrified all the time and his mental health just collapsed. He was hiding under tables and self harming, developed an eating disorder and hated himself for not coping.

If you can afford a private autism assessment, I would do that as quickly as possible. She needs an EHCP and access to support in school. If you can't, take her to your gp and get her on the waiting list for an assessment, make sure the school know that she is going to be assessed and ask them to contribute evidence for the process. I would also ask for a meeting with her HOY and Senco to make a plan for supporting her to return to school - they should be able to treat her as a child on the autistic spectrum even before she is diagnosed, and there are adjustments they can make to make school more tolerable for her.

At home, I would just provide lots of love, time and acceptance. Don't push her to talk but let her know that you want to listen. Home needs to be a safe haven where she can be herself and do whatever she needs to do to heal herself - if that means sitting in the wardrobe, fine. You could get her a pop-up tent in the corner of her bedroom and fill it with cushions and fairy lights, whatever she needs.

This sounds very much like my 13 year old daughter, before lockdown she was really hyper and I was convinced she had adhd and then after lockdown her anxiety and confidence just got worse and worse, she made it to year 8 and then we’ve had to homeschool her because it’s got so bad. She has clear sensory issues, food problems will only eat lunch and pasta and hotdogs, she too will only sit in the dark, even if she comes into the living room on the rare occasion she shuts the curtains, eats in her room, repetitive talking, talks really fast, will only leave the house with me, walking extremely close to me at all times, if it’s to crowded or she coughs or sneezes etc and someone looks at her it’s back to the car to go home, she’s obviously to danger while out, can start crying for no reason and pretty much relies on me like a much younger child, while at home she is hyper and talks non stop and outside of home there is no confidence and has anxiety. I’ve always suspected asd / adhd but I’ve always been told she’s never had enough symptoms for a referral and now she’s been taken out of school camhs and school have both said it sound like she’s neurodivergent 🙄 she has a mental health assessment with healios tomorrow which is through camhs so it will be interesting to see what they say, if they suspected asd / adhd those assessments will follow but for now I just need to get her to a place where she’s feeling better about herself, apparently girls with asd get to 13 and it shows as mental health because they’ve masked for all that time that they find it hard by that age.

First of all I just want to say I'm sorry to you guys going through what sounds like a similar situation to ours, I really feel for you. On the other hand, for me I'm glad my daughter isn't the only one as this means we have a little extra support from you guys.

Up to now we have been seen by Inside out who offered high intensity cbt, we have had tonnes of meetings with school who have been brilliant throughout this process and have tried to accommodate us and even have a part time time table which was a great thought but for my daughter it was still too much. I then self referred to camhs and we have our first assessment in 2 weeks with check up calls once a week.

She spends her days in her room. That's the top and bottom of it and I know it's not 'normal' but we are totally helpless at the moment.

I'm so sorry you're going through this.

I have no great advice, but just wanted to say that autism and OCD do often co-occur. So having one of them makes it much more probable that you might have the other.

The OCD UK website is a very helpful resource for OCD sufferers and their families

https://www.ocduk.org/

I would suggest considering the possibility of PANS / PANDAS as well to everyone dealing with mental health struggles in their children as I wish somebody had suggested it to us - https://panspandasuk.org/

It can often take a long time to piece together that PANS / PANDAS is at least part of the puzzle. The PPUK Facebook support group is excellent.

OP your first port of call is to your GP to say all the things you’ve written here. Your daughter sounds like she has a lovely caring mum and she’s lucky to have you. But she sounds like she will need some extra support. And you can ask for what support there is for parents in your area because this is stressful. It does sound a lot like my autistic DD.

Camhs have said it sounds like neurodiversity and at our initial assessment with inside out the lady also picked up on some traits of autism.

My worry now is how long is the waiting list? School have informed me it is 2 years minimum at the moment, and I've looked into going private but that's £4,000 we don't have right now

Thanks for all the advice guys

School will still have a duty to provide your daughter with support based on your daughter’s needs even if you haven’t got a diagnosis

Hi guys

I just wanted to give an update, the children's mental health service is a joke. CAMHS is a joke. The fact we get fined for our children not attending school due to Ill mental health is a joke.

Tried everything and back to square one. No medication for anxiety is allowed. The therapy for anxiety most likely will not work due to suspected autism.

One whole year of my daughters life and education ruined.

Feeling so exhausted and deflated.

More needs to be done for our suffering children

That’s aload of rubbish, who told you that? Camh getting help or doctors? At my daughter’s mental health assessment they noticed adhd / asd traits and she’s waiting to have 8 counselling sessions, which they will also monitor at the same time for referral for adhd / asd. Keep pushing until they listen if you feel your child needs to be seen. My daughter ended up being taken out of school because her mind got that dark it was the safest option, I’ve always known she’s got signs of asd / adhd but I’ve always been told it’s not enough to get diagnosed and now all that masking at school has made her ill from them not listening

Feel so sorry for you, we have been there. Give up on Camhs, find a private psychiatrist. The ND diagnosis might be useful but it sounds like your daughter needs medication regardless to cope with life.

We felt so bad about the lost 2 years waiting for camhs but that was during COVID and didn't have much choice

My DD is ADHD and prob ASD. We had to pay as wait list is three years here.

Yes this is my dd12 too, she was diagnosed as autistic in 2021. She barely tolerated primary school but the wheels came off totally last September when she started secondary. She hasn't been in since November. We are in the process of finding her an semh school as written on her ehcp but it's impossible. She spends all day in her room, won't leave the house, no friends either it's heartbreaking 💔

This must be so difficult for you and honestly i am not a mental health specialist so i cannot suggest anything to you, but the number 1 most important thing is to give your ongoing support and love. It might be helpful to consider why her mental health has been in drastic decline and if there is any way that that can be helped to solve her issues.

Honestly if you can afford it at all go to a private psychiatrist.

Camhs are useless. Over worked. Cbt isn't great therapy for ASD anyway.

She has trauma now and likely burnout and won't be able to engage anyway

She will need a care plan that's consistent and fit for purpose.

Where in the country are you?

@layhazsoph please check out https://www.asdchild.co.uk/. They did my daughter’s assessment last year. Cost us £1200 (ish). Worth every penny. They comply with the NICE guidelines and their diagnosis has been invaluable both from the point of view of helping my daughter understand herself but also getting all the accommodations she needs. Secondary was hell for her but her new sixth form has been amazing and I can honestly say every day is a happy one.

Do you get DLA yet? If not you should apply now and be super, super honest and list ever my single thing that needs you to support. That money could go to accessing private support. I put this off for years and really regret it and now that you’ve had it awarded we are using it for private therapy and seeing some really positive changes.