To not know if mainstream school is right for my DD? Querying ASD

[87SPD]

Hi there,

I have posted before about my DD12 and her struggles with what we firmly believe are signs of Autism.

She started secondary school last September and was initially great for a month but then she started to spend whole nights awake and crying about not wanting to go to school. I raised this with her head of year who was nice enough but didn't really provide much useful support. She gave DD a leave early pass so that she can leave the classroom 5 minutes before the others and avoid the busy and noisy corridors as she has sensory issues. However DD is so poor with communication that she wouldn't tell each teacher that she needs to leave early and obviously the school teachers can't remember for each lesson so that didn't really work.

Fast forward to this morning and her first day back to Y8, she has spent the whole night in floods of tears, literally 2 hours sleep! She can't communicate her feelings at all but I managed to get out of her that she feels like she doesn't fit in, doesn't know what to do when everyone is talking to her, can't focus, the buttons on her skirt and shirt are causing her stress, the loud noise and the change of lessons and teachers throughout the day. She didn't tell me all of that fluently it was little bits over several hours bless her. She denies that any of the children are being nasty or intimidating her and has no problems with any teachers.

This morning I called the schools SENCO department directly and they said they would arrange for somebody to meet DD at reception and take her to a 'flex' room so she can be calm and away from the crowd and that they will give her a temporary pass to this room until October. When DD got to reception, still sobbing, she had a full on meltdown, clinging on to me and begging me to not make her go in. It was utterly heartbreaking and I feel so guilty that she is there now in such a state.

The lady who collected her said the 'flex' room is a place for pupils to calm down in particular those who become frustrated or clash with teachers and need some space and that DD can use it a maximum of 3 times (lessons) per week.

AIBU to think that is not useful or appropriate at all for my DD? She is not showing frustration or clashing with anybody she is literally in emotional distress and going to sit in a room with frustrated pupils trying to calm down 3 times a week doesn't seem very productive for her.

I am at a loss now and feel that if she is not gaining anything from school should I take her out until real provisions can be made to accommodate her properly? We are seeking a private Autism assessment, do the school not have any obligations to provide additional support without a diagnosis?

My DD is the most gentle, tamest and lovely girl, she has gone under the radar because she has no behavioral issues so just seems a quiet girl. I feel so guilty that I didn't pick up on the signs earlier on in life for her.

Anyone with a similar experience who could provide any advice would be greatly appreciated! TIA xxx

Op, I would urge you to look in to alternatives. Mainstream doesn’t seem right for your daughter. This doesn’t seem like teething problems to me

Your poor DD. I wouldn't make her go, it sounds as if it is very traumatic for her. I'd start looking for alternatives.

You can get an EHCP (Education, Health and Care Plan) without a diagnosis. This should give more support and is the route to getting her into a different setting or to a mainstream school that might be further away. The charity IPSEA has a guide on how to apply.

For now though I would keep her at home, I know that's easier said than done, but that level of stress for your daughter is not sustainable

The school has a duty to identify her Special Educational Needs, and if you push like mad, they probably will. However it’s a long drawn out process and meanwhile your child falls apart.

So, here is what I would do:

• Put EVERYTHING in writing to school. You’re creating a paper trail and the first rule of SEN is we only write things down, we don’t “have a chat” with school about it.

• INSIST school call in the educational psychologist. Not a counsellor or Debs who did a mentoring course, get them to get the EP in.

• Pursue a private diagnosis with all speed. Consider also a private occupational therapist assessment for sensory issues of which there are clearly loads. Also consider ADHD (inattentive) as it often travels with ASD.

• Start researching other provision/placements right now. In all likelihood she will need either colossal adjustments to her current school or a different placement altogether. In order for either of these you will need an EHCP so have a good read about that too, start with SOS SEN, or IPSEA rather than your local authority SEN team. You need independent advice, not local guidelines.

• Find your (local) tribe, there will likely be a special needs Facebook page, start there.

• Breathe and be gentle with yourself. This will all seem overwhelming sometimes but you’re not on your own and it is possible to get through.

Hope that helps x x x

Does she have an ehcp ? Also can you afford a private ASD assessment ?
My dd is just off to uni and we had no idea she had ASD . She struggled all through secondary and college . We got a private assessment this year and if I had known I absolutely would have found a different option for her !

There is a school nearish which is for girls with HF ASD so I know they exist.

Dd sadly has depression , anxiety and anorexia as a result of coping too long .. we were dealing with the symptoms and not the reason so if you know and can help her please do .

I managed to get out of her that she feels like she doesn't fit in, doesn't know what to do when everyone is talking to her, can't focus, the buttons on her skirt and shirt are causing her stress, the loud noise and the change of lessons and teachers throughout the day.
Definitely sensory issues which often go hand in hand with ASD. It's really common for girls to fly under the radar and for things to become obvious around this age due to the increased complexity of school and social relationships. Sometimes it's even later, kids that mask well and don't have the more the profile that people think of as typically Autistic often end up with things coming to a head like this when it all gets too overwhelming. It can be really hard to see with some children, beating yourself up about not spotting it sooner isn't going to help anyone. You know she needs help now so focus your energy on that, on moving forward and getting her the support she needs.

My DD was much older then her brothers when she was diagnosed, she at 9, them at 4. I'd probably still be trying to work it out if her brother's hadn't been Autistic. My DD has been telling me for a couple years since reception that she didn't feel like she fit. Knowing she's Autistic has helped her, because she knows why she felt different to everyone else. Thankfully she's talking about wanting to die far less often since, but still dealing with anxiety and panic attacks.

Who your DD sees for assessment will be important if she masks well, she needs someone experienced with girls. It can be much harder to get a diagnosis for Autistic children who mask well, especially for Autistic girls that mask and are anxious and fly under the radar. As distressing as it is for you all of you, her not coping anymore will hopefully help you get a diagnosis more easily. The quiet, polite, follow the rules kid is a lot harder to get support for. Good luck with it all.

This is excellent advice.

I would advice also to contact the Education Welfare Officer at the LA and explain that these issues are preventing your DD from attending school and the only way to ensure her attendance is to get a support package in place. IME they can lean on school to get their shit together.

You can apply to the LA for a Needs Assessment to look at what support she needs. You don't have to prove what her needs are or even that she definitely has any, all you need to demonstrate is that she may have needs. Requesting it is as simple as writing a letter and there are some great guides online including templates. For my DC I used a template, wrote a bulletpointed list of what issues they were having, a paragraph or two of what support had been tried and its impact (very little and also very little) then a bulletpointed list of the consequences of this (basically a list of safeguarding, health, and wellbeing incidents that had occurred). If they refuse to assess you can appeal which again is just a form to fill in and you will very likely win the appeal.

Essentially, OP, the squeaky wheel gets the grease so you need to be a very squeaky wheel.

Sadly you will struggle to move her out of ms without an EHCP, and even then specialist provision is not a given. Speak to senco, inclusion officer and HOY again about how her needs can be assessed and met in her current setting.

Even with a ehcp doesn’t mean a special school, I’ve been forced into home educating despite dd having a ehcp because the LA wanted to put her in mainstream and my daughter had a full 30 hour 1:1 all the way through primary even in year 6 so wouldn’t hold your breath.

I don't have anything useful to add, but just wanted to say your daughter sounds exactly like mine. She's in yr 6 and I'm dreading the transition to secondary for exactly this reason. We are also pursuing an autism diagnosis.

As others have said you probably won't be able to get her a special school place. I dream i could send my daughter to the only girls only autism school in the UK but it's in Surrey. Nowhere near us.

I took mine out of school for similar reasons, although she is already diagnosed autistic.

OP an SEN school is unlikely (my 7 year old daughter has been attending one since reception as she had an ASD diagnosis at 3/4 and this September they didn't have a 2022 reception class due to lack of spaces) but there are plenty of mainstream schools that have great provisions for children/teens with additional needs. Maybe visit some other schools in your area and if your daughter "clicks" with any of them.

Also as pps have said you don't need a diagnosis of any kind for an EHCP. Your daughter's needs and traits that restrict her from gaining an education and what can be done to help are the focus of an EHCP not the cause of the issues. www.scope.org.uk/advice-and-support/applying-for-ehcp-without-educational-psychologist-report/

You are better off looking for a school with a dsp you won’t get a sen school my daughter was aggressive to teachers and pupils, only in class 10% of the time rest of the time at her work station reduced time time the lot and yet I still couldn’t get one like I said

Thank you so much for your responses particularly @Equallength I so appreciate it.

I just feel the school aren't 'getting' it!

@LunaAndHerMoonDragons thank you for your advice on the assessment I will mention that to them as she does mask well. However we have tried therapy too starting with group therapy and then 1:1 and she just doesn't talk unless it's about football which is her intense interest.

I understand that a special needs school is most likely out of the question I just feel that she needs a more fulfilling educational experience and the thought of her being so distressed pains me.

Would you agree that it would be reasonable to keep her off school until true and helpful support can be put into place? My DH is a teacher and comes at it very much from a school perspective and is adamant that she has to be in school but surely it's only causing more harm?

I am going to look at all of the advice on here and keep pushing for my DD, I never knew that you could get an EHCP without a diagnosis of any kind, all of this is so new to me, it seems I have a lot of research to do. Thanks again!

OP my DD13 has ASD and ADHD she is in a smaller school now with 12 per class and she is thriving.

Massive mainstream schools are absolutely shit for ND kids.

@jeaux90 thank you. Please may I ask if it was a struggle to arrange a smaller school and is this a special needs school? I really don't feel that mainstream is right for my DD.

My dd was like this and if there was alternative provision I would absolutely push for it. There isn’t in all areas of the country. We pulled her out and home educated which was exactly the right decision for her.

I feel your pain OP. My DS has also started year 8 and end of year 7 he started with anxiety surrounding school. We realised he has been masking all year ans as a result suffering from autistic burnout. The months of June and July were pretty distressing for us.

After a meeting with the SENCO and HOY it was decided that whenever he felt distressed he could go to student support to the SENCO/assistant where it's quiet and he could read/play games with them. In your situation I'd absolutely refuse the flex room as that would probably add to her distress. So DS spent a few lessons a week in there until we finally made it to the summer holidays. He was like.a different child over the summer.

We have not heard a squeak from the SENCO since he got back, despite their promises to support DS before the first day. The support just isn't in place in for most academically capable, well behaved autistic kids. I should add he has a diagnosis of ASD. Camhs aren't interested now and it's been a slog getting any sort of counselling for him which we are still waiting for. (huge waiting lists, being sent from pillar to post, extremely intrusive assessments from the local council etc). I'm convinced I will end up deregistering and homeschool sometime in the next few months because I can see the anxiety building up again and I'm not willing to put his mental health at risk.

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To answer your question OP

I went private. Not a massively expensive one but one that caters really well for ND kids. Two classes per year, 12 per class. (Believe me it's tight, I'm a single parent and work full time but felt I had no choice)

I went private for the diagnosis too, and didn't want CAMHS anywhere near my kid, give their current reputation and wait times.

My friend lobbied harder than me and got hers funded by the LA based on the EHCP. Her son is in a school specifically for SEN.

You say that she's allowed to leave lessons 5 minutes early but can't communicate this - does she not just have a card that says she is allowed to leave 5 mins early that she can just show the teacher? Or is the problem that she's not always aware when there's 5 minutes left? If the problem is just that she can't verbalise it them maybe you could tell school she needs one.

I really feel like you need to speak to someone at school face to face. Write down all the issues she is facing and any solutions that you think might help her - they may have ideas as well of things that have worked well in the past, but you know her better than them.

Choconut my dd has the card but isn’t able to use it. Using a communication card is still communication and that’s too difficult for her, in many children anxiety extends to non verbal communication. Mine really fear drawing attention to themselves so all the alternatives offered don’t really work,

Sounds like she may well have ASD and that this really isn't the right school for her, but just because this school isn't right for her, it doesn't necessarily follow that she wouldn't thrive in a different mainstream school who "get" her and do their best to support her.

I would be pushing hard for an assessment/get one done privately if you're able to afford it and look at other local schools to see if you can find one that will suit her better.

My DS has ASD. We moved him during year 9 to another school (this was pre diagnosis because the original school laughed at me when I asked them to get him assessed). The new school couldn't have been more different. When we went for an initial visit, the assistant head talked to him, rather than us about what he felt had gone wrong in the previous school and what would make things better and immediately picked up on the fact that he may be neurodiverse (said they couldn't get him assessed until they had some evidence). He had been there less than a term when they told me they wanted to get him assessed and asked if we would agree to this. They supported him as if he did have ASD from the very beginning though and he was much happier.

Like another poster above, we opted for a very small private school for my dd for secondary (she’s just started). It is a real struggle financially but so far they’ve been fantastic and she’s already far happier than she was at primary. Special school wouldn’t necessarily be the best for her as she’s very capable academically and really enjoys the learning - but she struggles with noise/busy places and other sensory stuff, and socially. The support she’d have got at our local mainstream secondaries wouldn’t have met her needs, she hates anything that marks her out as ‘different’ and struggles to communicate with staff (a TA following her around and having to go to a different classroom to everyone else would be something she’d find humiliating). Where she is now, the environment is calm and quiet and the staff are very nurturing, and there are other quiet, quirky students there so she’s making friends. It’s early days but I’m really hopeful we’ve found somewhere she’ll be happy. If it’s in any way an option for you, it might be worth looking at small private schools local to you?

Please can anyone pm me about tiny class private schools especially if they're not too expensive! Exactly what I'm looking for but struggling to find at secondary level.