To wonder how we can make school work for ASD 7 year old?

[Corilee2806]

I’m at the end of my tether and really need some advice from anyone who’s been through similar.

My almost 7 year old is autistic and also very bright (she was diagnosed privately earlier this year). We moved her to a new school at the start of this term because her previous school failed to support her, she was having daily meltdowns, tummy aches, and even said earlier in the year that she wanted to die.

We hoped this new school would help her start fresh, but half a term in, nothing meaningful has been put in place.
We were told there would be an Individual Support Plan, but it still hasn’t materialised. The SENCO is nice but things are slow-moving, and everything feels inconsistent, some staff are great, others don’t seem to understand her needs at all. There’s been no formal plan, no structured emotional regulation support, and communication has been very minimal since the first week. I don’t know if I’m expecting too much. It is a small school. How long should I be giving for the different stages of ADPR (which has never been formally done in the last year of challenges - because she is academically ahead)

After a positive start, mornings are again extremely difficult - panic, tears, saying she doesn’t want to go in. Some days she hasn’t managed to go. She can be ok once she’s in the classroom (typical masking), which makes it even harder to get anyone to take it seriously. At home she’s increasingly anxious, exhausted, and losing joy in the things she used to love.

We’re at the point where I’m wondering if keeping her home for a while might be kinder. I’m worried about her mental health deteriorating again, but I’m also aware schools and attendance officers can be difficult if you withdraw temporarily.
i don’t know what to do for the best.

Feeling very alone and like no one gets it, but I just cannot see her go through what she went through earlier this year again, and I can’t see how school can work for her in the current system.

I think that's smart. He will have a little bit more distance from it due to not being involved in quite the same way day to day. He could put all the useful bits into a Word doc. Depending how much info there is, he could maybe organise it roughly by the four types of SEN need.

I'm sorry the school treated you like that.

Dealing with SEN and school is hard enough without being blamed or disbelieved as well.

I hope this is the beginning of some improvements for you. I was really depressed 5 years ago but DD is 12 now and much better in many ways and she can often tell me what the problem is now, which she was completely unable to do at 7.

I would recommend OT that specifically investigates sensory issues if your DC has issues with labels or texture of clothes, seams in socks, food textures, sound, light as well as balance, difficulties learning to ride a bike etc. DS1 was assessed using SIPT. Will have to go private but well worth it.

DS1 also saw a behavioural optometrist in the NHS that also tested for retained reflexes which can contribute to anxiety - the body is constantly in a high state of alert due to emotional and sensory disregulation leading to a low tolerance for stress, hypersensitivity and fear of change. DS1 had several retained reflexes and we followed an exercise plan. Worth googling.

But for all we could do at home, the school played a huge role. DS1 was selectively mute at school but parents were never informed. We only found out when a teacher was present after school in a classroom where DS1 was talking 19 to the dozen proudly showing us his work and was taken aback because she had never heard him speak. He had been a pupil at the school for years.

It is very difficult to get support for a child that freezes (internalises stress) rather than fights (externalises stress) in school. But displays severe anxiety before and after school.

DS1 was not diagnosed as autistic (private assessment) and also had private EP, OT and SALT assessment until transition to secondary loomed. Transition failed, DS was out of school and we went to tribunal. Tribunal ordered specialist private school but he only managed to attend 5 terms. After SOS!SEN threat of JR he had tutors at home for 5 GCSEs plus SALT, OT and private therapy and NHS provided weekly visits from youth mental health workers. But all support ended when he became an adult - sooner because of Covid.

DS1 is now 24 and has been housebound for years only leaving the house when I drive him to a private dog field (we do have a dog) where no social contact is guaranteed. He locks himself in his room when trades people come to the house. Needless to say I am his full time carer.

Maybe it was always going to turn out this way. Maybe if he was diagnosed earlier he may have had more support and understanding. But that means that schools have to be willing to support non-disruptive DC that are meeting educational expectations for their long term wellbeing and mental health.

At present it seems that the SEN budget is spent for the benefit of schools to provide additional teaching to pupils not meeting expectation in tick box assessment of school performance or are disruptive due to not fitting in with current teaching policies and staffing ratios (or are undiagnosed waiting for school evidence and referral and long waiting lists) rather than using the SEN budget to support DC who they know have a life long potentially disabling condition and those being assessed or awaiting assessment.

OP is a case in point. The needs of her DD are overlooked in favour of DC prioritised by the school based on the need of the school rather than DC. If all these DC have EHCPs and this is the school’s priority then she needs assessment for an EHCP.

Diagnosis should not be needed for support but the report will often provide advice to teaching staff. The previous school can’t refuse to give information once a SAR is made. It is a legal obligation.

OP you have sufficient information to request assessment. This starts a legal process where you have right of appeal and the school and LA will have to collect evidence to prove that assessment is not necessary. Or that assessment shows an EHCP is not necessary or that an inadequate EHCP meets need. Once the process is started you have the ability to present further evidence as it becomes available through SAR and private EP, SALT and OT reports.

Given that your DD is 2e it may be a good idea for the EP to conduct WISC and WIAT which assess cognitive potential and actual academic performance. With a child who scored highly on standard IQ tests (I think DS was around 146) but only scores average or below average on performance then comparative scores may be statistically relevant in terms of EHCP assessment - ie less than 2% of those with the same cognitive ability would have the same performance scores.

Once you apply for assessment be prepared that the school will stop giving lip service to being on your side (whilst doing nothing, not doing what they promised and ignoring your emails) and will be on the side of the LA collecting evidence that DD doesn’t need an EHCP.

If school are helpful a “job” to get her over transition is probably the most effective in my experience. She might need to be in early to take the teacher the register, sort out the story box, put the date on the board and any notices, organise the apparatus for some event. If is happens for a week with a partner and then she’s so good at it she teaches the next pair how to do it, even better. Children only cling and cry if it’s the only way they are heard, so ultimately decide what you want to be her trump card and then make it work for her.

It may be a bit early for an EHCNA - even if the assessment is agreed they could still refuse to issue if EP and other advice is OA. I would push the SENCO for an EP/CCN report. With a diagnosis school need to be getting professional advice to support your child in school. Then use this as evidence for the EHCNA that needs are above OA. There could be a waiting list for this so get an IEP in place asap and request a meeting with the senco to set this up. Also discuss other options such as soft start, well-being room, time out. Generally with EBSNA/school anxiety advice is to try and keep going to school where possible (this is hard though) but you really need an EP/CCN

I wouldn't advise delaying in the current situation (the OP's situation and the general political situation).

It took us two complete academic years to get the EHCP because of waits for the refuse to assess tribunal and the refuse to issue tribunal. Those tribunal waits are significantly longer now.

I understand that in many areas the LA educational psychologists and OTs are only doing EHCP assessments anyway.

The biggest risk with a high masking autistic girl is the transition from year 6 to year 7 and I personally could have done without having to force an EHCP through in years 5 and 6 as well.

The bar in law for the EHCNA is low: may have SEN; may need provision to be made for SEN.

I wouldn’t advise delay either. There is no requirement of EP report before applying for assessment. It is highly likely that the LA will refuse to assess. It’s a delaying tactic. But you have right of appeal. My LA refused to assess but caved before tribunal because they knew they had no legal reason to refuse to assess. It’s just a means to delay assessment. Then they just have an EP observe but perform no assessment and don’t commission SALT or OT so they don’t know needs and then say EHCP is not needed. But you have right of appeal and can submit your own reports to show need and specified and quantified support required to meet them. Then the LA will commission counter reports which will likely agree with independent reports and you may end up with a decent EHCP. Then the school don’t apply it …

We don’t live in a world where LAs agree to assess where an child may have SEN and gather information from EP, SALT and OT reports that are specified and quantified and the LA issue an adequate EHCP within the timeframe and the school apply it. This is the problem.

Just as a general comment as it has come up a lot on this thread, I know schools often seem reluctant to push through EHCPs early but I want to point out that whilst parents can appeal decisions, schools cannot. The onus is therefore on schools to provide a greater amount of evidence in the first instance. Preparing for an EHCNA takes me around 8 hours as a SENCO (I'm allocated 3 hours weekly for the entire role). If the LA acts unlawfully and the parent isn't willing or doesn't have the capacity to appeal, there is unfortunately very little the school can do. I am always pleased when parents want to apply themselves and would support them however I can.

Thanks everyone for all the input and advice. It’s all quite overwhelming - we went from maybe DD is autistic in May to diagnosed by July and now we’re here - and still learning about the system, the acronyms etc. I learnt a lot in my last job before I stopped working as dealt with a lot of SEND casework, ironically not realising this was a world I would soon be in. I am expecting this to take a lot of time and energy in the coming years - my son is currently coping well but still young and also masks.

I’m really weighing up the pros and cons of applying for the EHCP now or waiting as there’s arguments for both, but slightly coming down on the side of now as we know it’s not going to be a quick process - she was never going to be the kind of child who would get awarded first time round. I know of several children with far higher levels of need (at least outwardly) and the LA has still refused to assess first time so we know this going to happen anyway. The SENCO’s reason for wanting us to wait and the school to do it is so we have less chance of going to mediation but I feel like surely this is going to happen anyway? And we just lose a few months?

@bus what is OA and CCN? Still a few acronyms I haven’t come across!

@PocketSand thanks for this - will definitely look into it, my daughter has a range of sensory issues mainly around food, noise and smell in terms of avoidance but also sensory seeking behaviours. I must look into retained primitive reflexes - my kids were both small and a bit early and I remember reading some research that said this can be more likely to be an issue and their nervous systems generally slightly less developed which could be a factor in a lot of their sensory challenges.

yes - DD is definitely freeze/fawn and we get the ‘seems fine’ a lot although also reports of things like struggling with the noise and hiding.

I completely agree with everything you say and reading about your experience with your son made me emotional. I’m sorry it’s been such a tough journey. You must wonder a lot if things could have been different. The system really isn’t able to support children like ours the way it’s currently set up. We try and do what we can at home and we’ve been asked several times if she’s experienced any trauma here but I can 100% say that all we do is try and create the most loving and safe environment we can so that she can try and cope at school.

she had the WISC as part of her assessment but not WIAT I don’t think. I remember the key headlines were her overall score was 146 but she was like 99.9 centile for verbal reasoning, which apparently can explain a lot of the anxiety. It’s almost like their understanding of the world is too much for their 6/7 year old brain to keep up with. I have no idea how to convey her levels to the school though - they just keep saying she gets extra challenge but she says she’s bored.

Thanks for this @Needlenardlenoo - I was looking at a similar doc the other day and trying to work out which areas she fits into, I think maybe some way in all of them, if you interpret learning needs as being giftedness as she needs differentiated learning. But definitely big areas are SEMH and sensory, and i would never have said language/communication but now understand that she needs support to communicate around feelings and emotions. I was continually told by the last school my children will never get one so still getting up to speed!

I think we've all heard "oh (s)he'll never get an EHCP..."

OA is "ordinarily available" which is one of those SEN oxymorons.

CCN baffled me too and I want to know to add to my SEN acronyms list, so hopefully that poster will come back and explain.

Sorry just wanted to add some practical ideas.

Will the teacher agree to let her into the classroom like 10mins earlier while the teacher is prepping for the day? I can imagine totally sensory overload going in with noisy kids.

Ask her where in the classroom she would like to sit - my auadhd daughter who is excellent at masking prefers the back so she can cast her gaze over everything happening and feels a bit more secure as she’s not as visible.

ask teacher if they will ask for ‘play’ volunteers and do a rota at lunchtime with different kids who are happy to take her under their wing for lunch.

help her prep for school

I have been there and my DD is now 14. I had “she’s not autistic” by 8 she had a diagnosis…you won’t get a EHCP…she got one first go aged 11, when secondary fell apart. To you won’t get EOTAS on first go without a special school first, yep we did (at tribunal). Now has a adhd diagnosis too. However she’s very academically able so after looking at all the special school options I quickly realised none could meet her academic & sensory needs. I was prepared to home Ed if needed but we do have a mix of in person tutors, and online learning plus activities. Trust your instincts, look properly at the local options - is there a special school that could meet her needs? If yes then your need a EHCP, if there isn’t then honestly your better off doing home Ed if you can facilitate it I would not go through the hell of getting a EHCP. There loads of options for learning now at all budgets. Also consider if you can afford a small private school I would not get a EHCP as they may rule you out as they don’t want to deal with it. Yet their environment may suit an academic able child who needs a quieter environment.

Have you considered an ADHD assessment for her? The treatment (medication) changed DS1’s entire school experience.

Can you look at private schools near you?

We managed to find a tiny private school not too far away, 10 children in a class. Very attuned to SEN. Less classroom time. It's been transformative for my DC and for many of their classmates, we were fobbed off for years at state school. Half the price of a lot of schools too so while a lot of money nowhere near the typical cost.

Early drop off in the class hasn’t been offered yet but could try that. They tried to get her to go to breakfast club but she wasn’t having that as not familiar. We’re going through all the motions of the different tricks and strategies to try but we did a lot of it at the previous school.

have considered private but I’d have to go back to work full time to afford it and that’s not really possible at the moment. We’re just outside of London so fees are high round here. It would have to be the right type, very small and nurturing, and a lot of flexibility with how they learn which i understand isn’t easy to find. But I am hopeful the right type of school environment is out there somewhere.

ADHD assessment is next on the list - that or OT, think both are really important for her.

My understanding re special schools where we are is they don’t really fit her profile - eg SEMH schools are for children with very challenging behaviours

@CosyMintFish about a quarter of her class?! I know the likely levels are higher than official data shows but this seems high. I would say about a quarter of the class have known needs - this is high in comparison to other classes in the school from what I know, or her previous class. I would be amazed if there were another quarter on top - unless I'm not understanding what you mean?

I agree with you in part but we know and have recorded evidence that her home distress is due to school. So we play our part and do what we can but I think in many cases girls like her are experiencing this level of distress vastly due to the school environment. I certainly haven't seen many children displaying such strong EBSA behaviours as her so it's not like she's completely hiding her feelings about school. She just goes into compliance mode once she's in.

I know schools can't cope with the levels of need. I don't know what the answer is. Today, I am just concerned about my little girl getting her childhood back.

Hi OP, in your location (similar to mine although you could be on a different side of the city of course), I'd say the positive is that with the high population density you will potentially have access to a lot of different schools for primary and later on for secondary. Many of these schools, you will not be aware of until you look. At least, that was my experience.

The other positive is that the cohorts of children are falling in size (peak birth rare was 2012-13) so places are opening up at schools that were formerly full. The downside is that the core funding is falling, as funding is per child.

I think you will find that the knowledge you gain from doing the ECHNA request (it's basically writing a narrative about your child) will help you evaluate some other schools. Your DD doesn't necessarily need a special school, but some staff with more expertise and experience. Despite the rising numbers of SEN kids, teacher training hasn't evolved much, and staff are often really young, so by definition haven't got that long experience.

If you PM me I will share my ECHNA request (names and places redacted) if you like.

A quarter of the class being on the SEND register really isn't that unusual. National average is something like 18% so it's only 2 more children than average. Add in children school are monitoring because the staff or their parents have concerns and it can easily be more like 1 in 3 children.

Back here because I feel like I’m going crazy. I was convinced (maybe against my better judgment) to hold off on the EHCP until the school can do a few cycles of ADPR by the school, other parents and a friend who used to work at the LA. So trying to finalise the ISP with the school, still not there and still no consistent morning plan. She’s not made it in for the first part of this week and we agreed just two hours a day. But every time this happens I’m told ‘it’s just the separation from you’ and ‘she’s fine when she’s here’

I feel like no one believes me and I have tried everything in the morning to get her in but without consistent support, safe adult etc it’s too hard and I promised I won’t force her. Over the weekend she said she’s not ever going to school again and she’s said she doesn’t feel safe there.

how can I convince them the truth of what is going on? She has a diagnosis but everyone seems to have forgotten it. I was told she was being controlling.

If you don’t have an EHCP you can’t hold them to anything.

if your child isn’t in school they can’t do cycles of apdr

apply for an EHCP. You aren’t going anywhere otherwise.

Can I ask why you chose to move to the small school OP?
not judging at all - but if it was for the nurturing feel and smaller class sizes, I’m sure that’s what some other parents of children with SEN thought too…. just like at my school. Then they told their friends, who also had SEN children how marvellous it was.
This happened so much that we started to say we can’t meet need as we really can’t, but the LA said ‘tough’ because we have spaces (theoretically.)
Now I have 15 out of 23 children in my class that need additional support.
Multiple EHCPs with so many interventions and targets that I literally do not have the hours in the day, multiple SEN plans, children that desperately need support who have no plans yet…. My TA went home at lunch time as she sobbed that we are letting down all of the children after a child ripped another child’s work. He has PDA and the child asked him to stop tapping his pen on the table.
I was called from my PPA the other day when the supply teacher left part way through the afternoon because she said she didn’t want to deal with my class.
I am regularly working 60 hour weeks planning and creating resources and adapting them multiple ways for each lesson , only for no learning to take place as I have to evacuate the room due to a child’s behaviour, or constant interruptions to my input so that no one understands what to do.
I miss my breaks, my lunchtimes etc as staff cannot do their job while at the same time look after these children.
If someone asked me to have their child 10 mins early I would have to say no - I can do no more.
Each day is a massive failure for us all …. No one’s needs are being met.
From talking to other teachers this is becoming the norm - we are just ahead of the curve and feeling it more due to our small size and relative lack of resources.
Our part time SENCO for 2 schools, also with a class of their own is on the verge of going off with stress- she is amazing and so supportive but expectations and workload are crippling.
Its horrific in schools right now.

@twinkletoesimnot yep you’ve pretty much nailed it I’m afraid. We had to move from the school they were at as it was harming my daughter - trauma and burnout, no support or recognition, refusal to authorise absences, accusing me of being over protective, ‘not seeing it’, my children will never get an EHCP etc. it was a big 2 form entry and both my children were overwhelmed by the noise and busyness of it. This school was our next closest and when I put the feelers out on local groups it was recommended a lot in part because of how small and nurturing it was, very much like you say. I had never even looked at different schools when applying for reception so did look around a few, had conversations with heads - some were very realistic and said they wouldn’t be able to support children with needs like mine, others said they thought they would be able to. I had no idea of a) my daughter’s profile (only got the diagnosis the week after we moved) and b) the level of need in such a small school.

Thank you for sharing this. You could be my daughter’s teacher, it sounds so similar and I know she is doing her absolute best but it’s impossible. I wish things were better for you and anyone in the education system at the moment - it doesn’t feel like it’s working for anyone.

Your DD sounds like both mine. Although this started for them after the move to secondary school as I had chosen the perfect primary school to manage their needs without (at the time) knowing what those needs were. (I changed my DD's school three times by year one. It was the fourth school that was the right fit. (One of these moves was due to relocating however). This ended up with DD1 having severe MH difficulties and two attempts on her life. She ended up not attending school in year 11 and sitting her reduced GCSE's at home with an invigilator. I can say confidently that she is now thriving at a college taking subjects that she adores with her aim on university. DD1 was off the charts clever in primary. Her GCSE results however were. Just ok. This was due to the masking, burnout and sheer trauma she had gone through throughout secondary.

DD2 is following a similar path although I removed her from school when I could see what was happening. I then started her at a new school as she wasn't able to study at home like her sister. This also hasn't worked. CAMHS said mainstream was damaging her so she is still on roll at her secondary school but hasn't attended since march. I'm constantly fighting to get appropriate education for her but there's constant reasons why she's not accepted. Mainly because she's bright, not violent, and hasn't actually made an attempt upon her own life yet. Oh, and she has a whole host of health issues but as none are life threatening, again she misses out on special provision.

it's hard. You HAVE to be that parent. Get an SAR. It's eye opening. Try off rolling her, look for different types of provisions. Look further afield. You sometimes have to get extremely creative. Print off the research about girls and masking etc. Offer to educate the people who willfully choose not to educate themselves. (Sounds patronising but I'm struggling to explain as I'm rushing now)

Just apply for the ehcna yourself op. They're just delaying, it happens all the time. If the LA refuse to assess appeal to tribunal. It's not that complicated, refusal to assess is paper based and 99% of parents win.