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

Yes I'm interested too. I thought they wouldn't be keen on anxious neuro diverse children...

My DD sounds very similar although diagnosed at 7.

Lots of good advice here. Definitely make an appointment with Ipsea. Also search for local charities to help. There will be likely be someone who can help to check paperwork. Get on your local Facebook group to get the lowdown on how your LA operates. Some are good, some are unlawful.

If you can, pay for a private joint ASD and ADHD assessment and a private OT assessment.The reports are usually in more depth. Get recommendations from your local support group.

In some places it can be worth getting a private EP report (as in some places the LA ones lean more towards what the LA will fund rather than what the child really needs). In some LAs they will insist on using their own LA EP report anyway so it isn’t worth paying unless you need to go to tribunal.

A lot of LAs are cash strapped for SEND and unless needs are severe will automatically refuse EHCP assessment. Don’t be put off, appeal it, you will likely win on appeal.

Ignore anyone who says they need to be behind academically to get an EHCP.

Could you consider education other than at school EOTAS if you can’t get a SEN placement? The LA could provide a tutor or there are online schools.

In some counties there is zero SEND school provision for academically able autistic children. Check your local offer (each LA has one) and do research on both the state SEND schools and section 41 schools. Also check out small independents.

Are you happy to say what LA you’re in?

We’re in the same boat. Anxiety started at the start of year 8 and she stopped being able to attend regularly.
now in year 9 and it’s going to same way. We are on waiting list for neuro pathways assessment (waiting times are not awful for us) but we wasted time with CAHMS, who were lovely but not appropriate.
School are looking into getting her a EHCP but not sure it will help. Unfortunately DD doesn’t want to go anywhere else and local provision is poor. There is an autism school but I don’t think it would be a good fit for her. I think the behaviour of other autistic children would be distressing for her and the children there are very high needs. She wants to be in a small classroom with well behaved girls. That’s her dream.
I would suggest home schooling but that is also distressing for her (it was in lockdown) she needs to be around other children.
It almost seems impossible.

The beginning of term is always harder, transition from one environment to another is difficult especially when they have been at home for long periods.

I would start by removing/reducing some of the sensory stimuli that are affecting her.

Have you considered noise reducing ear buds? The Calmer ones are discreet. Or ear defenders/noise cancelling headphones with music playing (you would have to speak to school to ensure they were aware).

Look at ways of reducing button irritation, t-shirt underneath shirt, changing shirts or skirts. You can get low sensory stimulus uniform with no seams etc, M&S do a range now.

Talk to the school about a buddy system for moving between rooms so that she can leave early and come in later with another student. That student could just prompt her to go when it is time or the teacher could prompt the buddy to leave with her.

School should make all teachers aware not to direct questions at her initially and to provide extra support when settling into lessons.

My daughter is similar in that she will not request to go out of the room, she doesn't want to be seen as different, she will just shut down, is anxious and exhausted at home from coping all day. We are in the process of re-referral for assessment, the waiting list is long, it was 2 years the last time primary school referred, but they didn't give her a diagnosis because she didn't want one at that time and was old enough to voice her own opinions.

My youngest has an EHCP and has a lot more support in place in mainstream primary, he has higher needs than my DD though and does struggle sometimes but with the right support he is doing well.

@Tigofigo where are you in the UK?

Mine is at an all girls private school in Oxford. It doesn't specialise in SEN but that's not what she needed. They do have a great SENCO though and have been brilliantly supportive.

Mine boards two nights a week for two reasons, one I wanted her to get a bit more resilience and independence but also I work full time and need to travel a bit.

It's really just about finding one that's not extortion level expensive that your child needs. I'm aware I'm in a fortunate position but it is tight as a single parent with a mortgage etc.

Another friend has been luckier and got their place funded by the LA.

Most of these things take time to implement. Her having to communicate her needs to do things like leave the classroom early would be problematic for a lot of Autistic children. DD loves her teacher, but will absolutely not tell her if anything is wrong, or even hand her a note. She doesn't want to stand out, can't come in late, wouldn't leave the classroom for a break. It makes it tough when you need to find ways to support them through the day that don't require them pushing through even more. Just getting there is a lot, is too much some days. Something immediate that might help would be a reduced timetable. Just coming in 1 hour each morning. One thing that can help with anxiety is to break the thing that's making them anxious down into little small steps and keep breaking it down till you get a step that's only a 3/10 anxiety level. This could be coming in for 15 minutes in the morning if that's achievable for her.

DD went through this for quite a while across 2020 & 2021, was doing better when the first lockdown hit early 2020 and set us back a lot. One thing for her was she'd spend all morning thinking about school, going over and over it till she was hysterical, panic meltdown. I couldn't take it one morning and a grabbed her tablet and told her to go watch something. She follows youtubers with Minecraft channels. So our routine became she got her tablet as soon as breaky was over, I got everything ready, lunch, bag packed, shoes and socks out, all beside her, she'd get dressed while watching YouTube then it was straight into the car, with her tablet till we got to school. This was all pre ASD diagnosis, she still has anxiety and panic attacks too. I had to get her out of her head, I have anxiety myself so pretty familiar with it and I could see she was caught up in those circular thoughts, fear feeding back on itself till it poured out her screaming and crying. If that's what she's experiencing you need some sort of circuit breaker. Homeschooling could be the circuit breaker she needs, but while you're working everything out a very reduced school timetable may help her. Even if you end up homeschooling it would be a positive for her to know she can get past it. Anxieties one of those things, the more you restrict what you do to stop the panic, the worse the panic gets. Pushing too much is also really, not too little and not too much, it's a fine balance.

Have pm'd you.

Excellent advice already about school on thread.

I also found working with my dc on their emotions and coping strategies to help them feel in control of situations. You might find 1:1 play or art therapist more helpful for dd or with her love of football someone who can kick a ball and chat.

Iv had to teach dc emotional language and expression. I cried last week when they verbally expressed their anxiety and thoughts.

Mine had earplugs things they were in the ear to take edge off the noise
www.flareaudio.com/products/calmer?gclid=Cj0KCQjw6_CYBhDjARIsABnuSzquS1AxiKmqJIJK8g_9y0Mr0Q-tn6sVO70zAuFLLupJHano6awQ6A8aAuh_EALw_wcB

I tailor uniforms and use velcro. Mine use tight underlayer top and shorts useful.

Thanks, I'm in NE Somerset but willing to move for the right school (within the south / South West). Would consider Oxford. I have a boy so all girl's school not an option!

I would not recommending upping sticks and moving hundreds of miles away for a new school. It is wonderful you are willing to make that sacrifice but…

puts an unbelievable amount of pressure on the school being a success. You dd is older enough to feel this pressure very very much so, irrespective of how many times you tell her otherwise

puts you in a position of presumably having no network, no friends and no chance of meeting people through work as presumably you must work from home?

Is it only you and your dd you need to consider? No other children? Partner? Her father?

@Tigofigo

I chose a single sex private school for my DD because girls perform better in them, there are some really good mixed ones though.

It basically comes down to small class sizes for ASD, and decent SEN provisions. Mine also has ADHD (medicated school days) and they are super supportive of her.

It took a bit of research to find the right one but well worth it!

I have PMed you.

It's not necessarily out of the question. DD2 was dx with ASD at 11. She has always struggled with school. I finally applied for an EHCP in February 2022, as she'd started school refusing. School wouldn't support the application, but then supported it once the LA agreed to assess.

It was a real fight to get SALT and OT assessments, but I managed. She had to go to a PRU for a few weeks, but long story short, she started at an independent specialist school last week. She has 3 in her class and 35 in her school. She has a tutor that attends every lesson with their class, so a consistent point of contact. The uniform is modified to suit sensory needs.