Help please, 15 years old daughter not in school

[Zapi]

Hi , first time here posting here, I would appreciate any advice and direction towards helping my 15 year old daughter. She has been unwell for awhile ,anxiety and low mood, starting to get worse beginning of this year. She is on the spectrum, diagnosed in primary school. She is not attending school at the moment with severe anxiety, stopped going in by February. She is getting online CAMHS therapy for a couple weeks now, early days. I will write the back story below but to get to the point where I need help with, I am going to have a meeting next week with school Educational psychologist, I would appreciate any advice how I should prepare for it to get the most out of it and I would like to hear from anyone who is willing to share their experiences with similar situations in secondary education, their kids not school what to expect and do next . Thank you so much for reading.

Just to give more information
My daughter is under the school’s SEN for ASD. She is and has been affected by anxiety all her childhood but not to the extent she is experiencing at the moment. She had received different talk and CBT therapies through school to manage anxiety in the past but none of them she has found helpful. She had a difficult start in secondary school with transition and adjustments, bullying, finding it hard fitting in and making friends, the usual challenges with most autistic kids. But , by year 9 she was doing well academically, catching up with her peers and in a friendship group with a few girls who are all very academic. In her current Year ten she managed to move up to top sets in most subjects. And then after Xmas break last year, she started having severe anxiety symptoms usually triggered just before any kind of assessments and school had to call me a couple of times to take her home because she couldn’t physically calm down, too agitated. It did get pretty bad quickly after that, she couldn’t attend lessons but stayed in the school, trying do lessons by herself, struggled to catch up and finally stopped going to school since February. School has been supportive, they have offered reduced time table, a slow build up to reintegrating my daughter back into school. None accepted by my daughter. She is totally disengaged from any kind learning and she doesn’t think she will ever go back to school. She keeps telling me she is unwell and I am not understanding her. To be honest she is right but I am trying. My focus so far has been getting her some support for mental health while encouraging her to work on her GCSE. But she is waiting to be cured first, her words. Understandably I am worried about her education and future.

That sounds very stressful for you both. Are her worries less now she’s not in school? Ie do you think she doesn’t thrive in school environment? If so lots of state schools fund online gcse tutoring through platforms such as Tute. Our local comp is sending gcse invigilators to homes of kids so they can do their GCSEs in their kitchen as it’s their normal way of working. I think there’s a fb gp called Not fine in school or similar. Interested in her “cured” sentence. I wonder what she wants to be cured from? What is her understanding of autism? What can she do at home that she loves? Is she able to connect with peers online or otherwise?

Thanks Elderflower, it is good to know there are options to explore. I think when she said cured, it is not in a sense for her autism, it is to do with her anxiety and the physical symptoms of it, they distresses her too much and I believe she has health anxiety too. Do you have any experience dealing with school educational physiologists?

The children I know who have had an Ed psych assessment either online or in person have found them very approachable - remember most of their assessments will be with children who are anxious so usually very flexible in the appointment. They will write a report and make recommendations of what they think the school needs to provide in order for her needs to be met. Might be useful to write a list beforehand of her strengths and difficulties. Does she already have an ehcp? Theoretically would you be able to stay at home if she didn’t return to school the traditional sense? Someone else will no doubt come along soon who knows the intricacies but I believe that whilst a child is on roll the school need to provide reasonable adjustments in order for them to access education. Next steps seem to be working out what that looks like in practice.

My DS has ASD and ADHD.

Similar story to yours - he just found being physically in school too overwhelming and despite being very bright was crashing and not passing any subjects.

So we took the decision to home educate.

We initially gave him 3 months off to recover and before the end of that time his thirst for learning was back.

Due to Covid we spread out his GCSEs over 12 months sitting some in May/June, more in November and again some in May/June.
This approach is very common among home educators as there is no rule they all have to be sat together.

He ended up with all 8s and 9s including in a subject he started from scratch 8 months before the exam.

We generally only did 2 hours of work per day / 5 days a week - increasing it in the 6 weeks prior to exams but never did any work in the evenings or weekends.

This gave him time to follow other interests and not feel overwhelmed.

If you want to PM me I can share some really helpful Facebook groups with you.
You will find many children who start home
ed in their mid teens also are neurodivergent.

Best decision we ever made - son has blossomed and is happy and confident again.

Her choice of wording is interesting: cured. I think you need to get to the bottom of what she really means. Verbalising it, or trying to, will help, so that she can try and explain to camhs online counsellor what it is that she wants. Tell her you suggest you both talk about this, again and again, to try and express it, put it into words so that everyone can help her. This will be tricky, but trying is actually part of the whole healing process.

This is increasingly common for ND teens. My DS has been out of school for nearly 2 years now, having been seriously unwell (and managed 5 GCSEs). Have a Google of autistic burnout.
Your DD needs an EHCP as she is not able to access school due to her SEND. Don't let them fob you off by trying to separate out mental health from autism. Keep repeating the narrative that she is autistic, which means that she struggled with the sensory and social overwhelm of school, and is unable to cope with the pressure of the assessments.
There are lots of options - online school, tutors, self study, special schools. Please prioritise her mental health and don't worry too much about everything else. She will get there in the end, even if it takes a while.
There's a great thread on the mental health board called parents of anxious teens - lots of expertise !

Could be totally wrong here, barking up the wrong tree, but : Cured is a defensive, negative viewpoint. It's like saying I want the relentlessness of my type 1 diabetes to stop. I want say eg tinnitus to just just stop, please. Go away. Just stop. But it doesn't, it can't. Things don't just stop, rarely get 'cured'.
She needs acceptance. Of herself. Her ASD, her anxiety, that is her, part of her. She has to accept that, and find practical ways of dealing with it. Verbalise what is really bothering her, and then adults and professionals plus fellow sufferers via online support groups, will suggests apps, books, adjustments to our way of thing about it, that may just help. And we have to keep trying different things until we find something that does help, even if it's only a tiny bit.

Sounds like a autism burnout, she most likely feels trapped by high expectations. I would stop nudging her gently, take a clean break with a clear deadline (her input) without any pressure during that time, but also a clear plan afterwards.

Considering the long break, it will probably be home education until GCSEs after which you can reconsider.

Curious what the school psychologist will tell you. They are paid by the school you know!

This exact thing happened to DD2. Also autistic, diagnosed early year 7 due to waiting lists.

She started with emotionally based school avoidance after the Christmas holidays of year 10, was put in R&R (small base), then didn't cope so was given a reduced timetable, then didn't cope, and eventually by mid February they told me to stop trying to get her to school because she was so obviously distressed.

I applied for an EHC Needs Assessment, then as that process was underway, she was offered a place at the local PRU in their 'vulnerable students' centre. It was part time with just 2 or 3 pupils per session.

Eventually she got her needs assessment and I requested a sensory OT assessment and a Speech and Language assessment as part of that. A bit of a battle, but we got them.

After all that, she was given a place in an independent specialist school. She has 3 children in her class, with a TA who accompanies them to all their lessons and is 'their person'.

The school is brilliant. DD2 went on her practice D of E walk this week. She was in a terrible state and we had to put a lot of things in place for her to attempt it. In the end, predictably, she didn't use most of the measures but for her, knowing they were available was what enabled her to push through.

The difference in her is remarkable. She actually talks at this school. She has weekly SALT sessions to work on her mental state and communication skills (although her language is ok, she finds it very hard to express herself and gets too anxious). She also has weekly OT sessions to work on her sensory needs. Her school has a farm, so she spends one morning per week at the farm, which she loves.

As well as studying her GCSEs in English, Maths, Spanish and Science, she's doing Functional Skills in both Maths and English, which takes the pressure off her GCSEs, and she's doing a vocational qualification in catering, a BTEC in IT, and a BTEC in construction.

DD2 is still struggling with anxiety. We're still on the CAMHS psychiatry waiting list. It isn't easy and she's not managed to be full time in school yet. There's a lot of damage to be undone from her last school. However, she's doing really well and she is improving.

Email Senco so there is a paper trail. Ask for urgent meeting. Basically say this clearly isn't working, so what are you going to do about it.

Pay for Private counselling?

How many GCSE's is she doing? Reduce the number, to ease the stress?

Hi. I know where you are coming from. DD was mid y10 when Covid hit, already struggling with mild anxiety. Fell off a cliff and never returned to school, missed all her GCSEs.

DD is not diagnosed with autism but has various SEN.
GCSE years they ramp up the pressure and kids previously just coping can buckle.

We when she didn't return in Sept we went private and she is on meds with counselling and is now in her second year at college doing a L1 course (pre GCSE level). If she hadn't been ill she would have aimed for a L2 course to start with.

Autistic burnout is a thing and I've read recently can take a year plus to recover from. She may need a bigger break from the world than you realise.

There's a Childrens Mental Health board on MN which might help, also the SN Chat board. The SEN board can also help you with EHCPs which she will need at some point.

Thanks so much everyone for your messages. I read them all again carefully reply and get back to each of you later. Thanks again, much appreciated.

Good luck OP. My academic autistic child was also out of school and is now thriving in a specialist placement. All the primary school teachers who told me he'd never get an EHCP because he was too bright/others need more would be surprised. Home ed/online school is probably the line of least resistance by this stage of Y10 but look into EOTAS and remember your daughter needn't be wedded to the usual school year structure. Taking an extra year or two to finish school can work really well.

I have no advice but wanted to tell you that you aren't alone and I really, really feel for you. I could have written your post almost word for word about my 14 year old son (year 10). The autism, the anxiety, won't get out of bed as in low mood, CAMHs, reduced timetable since February, total non engagement...we are going through this too. I know that doesn't help you but I often feel I am screaming into a void and knowing that I'm not alone sometimes helps.

If DD can’t attend school full time the LA should be providing alternative arrangements to ensure DD receives a suitable full time education. Are they?

Is DD Y10 or Y11?

If the ed psych assessment is part of an EHCNA you should request an EHCNA too. The benefit of an EHCP is it can include therapies that DC wouldn’t otherwise get, for a longer period of time, more frequently and without the need to sit on the normal waiting lists.

If you haven't found it already, Missing the Mark on FB is worth a follow.

@TeenDivided thanks for sharing. Very interesting re autistic burn out. Will definitely google more about it. I agree re long break, the way things are the moment my daughter will need it. Good luck with yours and wishing you all the best.

@SnorkelingInHawai thanks, I have sent you pm.

@Bubbleswithsqueak thanks, will check out MH thread you mentioned.

@PerSeer she is just resting, doing nothing to do with school or learning. Have to fight the urge not to tell her do something productive while waiting for help. Will try to feedback after EP meeting.

@Lougle thanks for sharing and I am happy that you have found a support that is helping and working for your daughter.

@Oblomov23 thanks, very good point. Re counselling she had some sessions but didn’t work for her, reducing the number of GCSE has already been suggested if she starts going back to school slowly.

@Piony thanks, I am happy you do is doing well now.

@BramblyHedge thanks, yes i agree it does help to know you are not alone. Wishing you all the best.

@ThomasWasTortured She is Year 10. I am considering the EHCP, mentioned it to school senco but advised it is too early to start the process now.

@Zapi it is not too early. The SENCO will have been told that they have to be doing the assess, plan, do, review cycle to evidence intervention. They are right in most cases. However, your DD has an established diagnosis, she's in a critical year of education, and she's now completely non-attending.

The only considerations for the LA of you request an EHC Needs Assessment are:

1. May your DD have SEN? (Yes, she has ASD)
2. May she need special educational provision through an EHC Plan to meet her needs? (Yes, she's deteriorated so far that she can't even attend school).

You can use IPSEA's model letter to make the request.

When I did DD2's request, I used the information I gathered from a Subject Access Request to support my claim, but at a minimum I would include:

Your DD's diagnostic report
Any school reports
Any communication with the school regarding your DD's absences or support given.

In our case, DD2 was given the independent school placement at the end of year 10 (we visited the school for the first time on the last day of three summer term) and then, later, the LA agreed to decelerate her, so that she got to start year 10 again.

@Lougle thanks so much, that is really helpful. I will get on it immediately then. I have contacted the LA a few weeks back and they have provided the link to the online portal to make EHCP application. Am I right in thinking the request for assessment precedes the application for EHCP?

I agree with Lougle. Request an EHCNA yourself. Don’t listen to the school, it is not too early to request an EHCNA. Unfortunately lots of schools do put parents off applying but parents go on to successfully apply themselves.

The EHCNA is the needs assessment you first request. The LA decide whether to assess or not and if they do they then decide whether to issue an EHCP or not. You don’t actually apply for an EHCP itself.

If the LA aren’t providing alternative education they should be. Email the Director of Children’s Services informing them of the situation and requesting provision under s.19 of the Education Act 1996. If the LA refuse, delay or ignore you email again reminding them of their statutory duties and threatening judicial review if they don’t provide provision. Then if that fails contact SOSSEN for help with a pre-action letter.

A therapy that relies less on verbal communication &/or taps into her interests might work better e.g. animal assisted therapy.

Senco said it was too early to start EHCP? FFS don't be fobbed off by her bullshit. Wise up to her bollocks. You need to be more savvy and fight clever.

My dd highly rated dbt therapy, she has in person now but found a workbook I bought online (dbt workbook for neurodivergent people or something similar) helpful. She missed a lot of school but worked from a laptop instead

@Zapi our SENCO point blank refused to help with an EHCNA. Categorically refused on the basis that she didn't believe DD2 met the criteria for an EHCP. When I applied myself, DD2 was granted the needs assessment before the deadline to assess, was assessed, was given the (very expensive) school place, then granted an extra year there. SENCOs her misled about the EHCP process, a lot.