What to do with daughter? So worried.

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Name changed in case anything identifiable so can’t link to previous posts!

I’ll try to keep brief.
DD is 11 (year 7 at school). She’s always been shy/introverted and that’s ok, however it feels like she’s gone beyond that now and is absolutely closed off from everyone and everything.
She barely speaks to us at home, she’s quite isolated at school and has very few friends who go through phases of leaving her out, but she doesn’t discuss this with us.

She will sit in her bedroom all evening and weekends and not interact at all. If we take her out she gets panicky and says people are looking at her.

She went to the GP for an unrelated problem last week and refused to leave the waiting room, wouldn’t speak to the GP.

She has what I’d describe as OCD tendencies or maybe just full blown OCD - won’t have anything out of place in her room, if anyone accidentally creases her bedsheet all hell breaks loose. Never leaves a single thing on her floor (trying to summarise here, I know it sounds a dream to have a tidy child but she is BEYOND tidy, it really causes her distress if it’s not how she wants it to be.)

Year 6 was a nightmare with school refusal, we went to MIND as she was having what appeared to be severe anxiety around school/social situations and was picking her skin. That was a disaster as we went 3 times and she refused to engage and wouldn’t speak and they didn’t seem to know what to do with her. She begged me not to take her back and so we stopped as I couldn’t see where it was going to go if she wouldn’t speak to them.

At that time GP said no CAMHS referral as she has no mental health concerns (not sure I agree) but having witnessed a CAMHS worker assess a teenager who had attempted suicide a couple of weeks ago, I am not confident in how useful they are either.

My DD basically seems to have checked out, she is going through the motions and almost seems to have no idea what’s going on around her. She feels like a shell of the person she was and I don’t know how to help her.

Before anyone suggests it, she may be autistic, I don’t know, she has some tendencies and it runs in my family. School have never raised any concerns, I think she’s so much in the background she just goes unnoticed and I’m so worried where this is all heading.

You are describing my daughter, she's 13 and now diagnosed autistic.

I would try to press for a diagnosis if possible as it will help to get support in school. Speak to the SENCO as a previous refuser she should be getting some support.

I'd also get back to the GP, the ocd traits are a clear sign of anxiety as was the school refusal and inability to engage in talk therapy. It really enrages me that a child has to be at breaking point before they can be seen by CAMHS.

For my daughter things have got better, she is now no longer educated at school as the environment was too much of a trigger for anxiety for her and she wasn't able to learn because she was in panic mode the whole time she was in. This obviously is not the answer for everyone.

Being withdrawn at home after overwhelm at school is also quite normal for children with autism.

This sounds like burn out. Maybe autism Maybe adhd or both.

Can you afford to go private?

Do you know, we probably could think about going private. Does anyone have any recommendations of where to look please? (North west based).

I would go back to GP and push for a referral.
I'd also ask to meet with her form tutor/head of year and SENCO. There may be some gentle interventions the school can introduce without any diagnosis. Or they may be able to refer on. They need to understand that however well she is masking at school it is coming at a cost elsewhere.
Basically you need to drag in support from wherever you can get it.

Alongside this I'd ask around locally if there are any girl SEN groups and ask about recommendations for a private diagnosis and/or helpful interventions. Facebook can be very helpful for this - look on home educators boards as well.

I'd also write down a timeline from when issues first arose - include as much detail as possible. It is handy to have when talking to new professionals.

I am sorry she is going through this - it is such an awful worry.

I recommend private therapy. We needed this for DC and it was £50 per session.
The difference was incredible.
CAMHS just too damn long and I was worried about it leading to self harm. It didn't because we intervened (had to work my ass off to afford it but it was worth it!)

We only needed about 10 sessions! If that.

Just to confirm, the therapy for this age was still "play based". I.e gentle chatting and sketching etc

Private also worked with the school and arranged a formal diagnosis etc

Sorry, I have ADHD hence all my bitty posts 😳

I’m sorry I have no experience of this but agree with other posters.

Perhaps try a deep dive into Google and look up good registered websites on Autism etc and see if it resonates with you. The more you know, the more able you will feel to find a solution.

I am very introverted and I had some odd behaviours as a child, but your child sounds more fearful than I ever was.

Best of luck.

Having autistic children i would say you DD is ticking lots of boxes for a girl with autism. It sounds like she's may also be suffering some autistic burnout too. I'd look into assessment asap and be very honest with your dad about what and why. If she understands herself she'll will be happier.

daughter not dad!!

Yes I can think of a few children I know that really benefitted from art therapy. No requirement to be interested in art but its a good distraction either whilst chatting or to funnel emotions.

This is my dd too. Especially feudal to speak to Gp which made the diagnosis even harder.

She was diagnosed at 16.

Knutsford therapy rooms, Lucy Korneki. She did my assessment alongside an OT. She's really down to earth and easy to speak to. They assess kids and adults for autism. Mine was done remotely as during lockdown.

I am sorry that your DD is struggling. I agree she needs assessment ref autism. My DGD had this and the diagnosis was clear. She shares some of the traits you are describing in your DD. Don't be fobbed off by school, nor by GP. I am afraid that getting the right help for a child with greater needs is quite simply a battle - that in itself is disgraceful - but you do need to ready to be ready to fight her corner.

DGD had a private assessment.

My child was similar at the same age. Severe anxiety which did improve after we eventually got cbt from camhs.
I'd recommend private assessment though as things even worse now

Thanks for all the replies! Making lots of sense to me.
Anyone who has a daughter (or son) who has been diagnosed at a similar age, can you tell me how it has helped, if at all?

Like a previous poster, I also was a very introverted child and I have definitely played down what’s happening with DD as her being “just like me” but she’s actually moved far beyond how I was as a child to a point where I can’t just say she’s shy now.

Lots of aspects of your daughter’s presentation speaks to how autism typically manifests in girls:

Skin picking / repetitive, self-injectors behaviour
OCD traits / controlling her visual environment
Checking out / autistic burnout and shutting down

Autism in girls without intellectual disability is hugely under-diagnosed (9:1). Girls don’t show up on the radar for loads of reasons - they have a predisposition to internalise their difficulties rather than externalise them, plus many aspects of autistic female behaviour, e.g. appearing shy or compliant, are considered socially acceptable in girls but not boys.

Allied Health Professionals who conduct autism assessments will likely have a good understanding of how autism manifests in girls, but GPs and teachers typically are less informed - therefore, I would say that you shouldn’t necessarily rule autism out on the basis of teacher / GP advice.

Chris Packham has a great documentary out at the moment which includes discussion of autism in girls which could be a helpful watch for you.

Good luck on your journey. I’m not sure where you’re based but I’m in Yorkshire and I could signpost you to some sources of support if you’re near me.