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 will just apply, I was just told by so many different and credible sources (not only the school) that without any school evidence it wouldn’t be possible, but I know we will likely have to appeal every stage anyway. Will keep going and try and progress the SAR from the old school. I still have GP letters about her mental health at the time so I assume we can use that.

I am finding it really hard to be that parent as I feel like no one has my back, sure I’m not alone in that. But learning to live with it, will do whatever I have to do to make them understand.

Those sources aren't credible, they're biased. Get yourself on the Ipsea website.

One of them was our local autism charity that support a lot of families with applications, so I definitely took that one as credible. I can’t believe how much misinformation is out there.

I'm going to offer a slightly different perspective.
My DD is ASD. Diagnosed late teens. Clever but has found school challenging.
School is not a great environment for ND kids in very many ways. It's not a great environment for many NT kids either.
What schools are mandated to do is not always what's going to be in your child's best interests.
Schools are there to educate a broad range of things to a lot of children at once.
ND children often have very specific needs and wants and it's hard for that to be met - not impossible, but hard.
My DD is now at University so I have perhaps the benefit of hindsight and of supporting an undiagnosed child.
I now know DD masked pretty solidly at primary school and didn't really have much of a clue what was going on. She was however, articulate and creative and that pretty much got her through.
She's a rule follower so ditto with all the things she hated like uniform (sensory issues) she understood she didn't really have a lot of choice.
I now also think she's quite oppositional so being told what to do all the time wasn't great and unfairness would send her into a spiral.
She's had great support at home and has had friends who 'get' her (and many who don't).
It's been far from plain sailing but not everything is a battle to fight and she has learnt to live in the world and understand how to make that work for her.
Maturity has helped her immensely and accepting her differences and being happy (mostly) in herself.
COVID lockdowns came at the perfect time for her and several months out of school in yr8 I think kept her in school long term.
She's gone on to get amazing GCSE and A level results and I'm cautiously optimistic about how well university is going.
I've always tried to keep her in school but Tbh I don't think I would have battled to do so, sometimes they do need time to decompress. Anxiety is the crippling factor for so much of the behaviours around ASD. Keeping my DD mostly happy and stable has always been my goal.

My child is similar OP. Schools just aren't set up for children like these.
It's not necessarily a criticism of the school as they do their best with limited resources and many children with more pressing needs. The quiet anxious ones whose stress turns inwards just aren't a priority for those resources.

Looking back now I wish I hadn't forced my child into school at all.

And you will be labelled anxious mum who struggles to separate because child is fine (quiet and not bothering anyone) once in school.

Oh yes I’m very used to being called anxious mum already! As if anyone wouldn’t be anxious about their child’s mental health crumbling and seeing them fall apart on trying to go into school every morning.

Sorry OP I think I’ve read all your posts but I might have missed if you’ve covered this - have you considered home educating her?

I think you need to disregard other people minimising your anxiety. It's actually entirely reasonable to be anxious about your child's well being.
I've been thinking about this thread and chatted with my DD about it too. One thing I think that gets a bit lost in the practicalities of trying to deal with all of this stuff is how much of a delay there is for many of these children in their emotional understanding. DD is and always has been very clever but with hindsight I see clearly how socially delayed she was. It's particularly difficult to square the sense that this clever, articulate child is really a good couple of years behind their peers in both understanding and coping with the complex social demands of life. She was also assessed again in her teens for OCD and anxiety (she declined an autism assessment) and they said she scored very highly for both social anxiety and attachment - she always found being away from home very hard. She's learnt strategies for coping and is very much better at these things. Gentle practice and measured exposure over years has been important. OCD is and I suspect always will be a work in progress.

@MillsMollsMands yes I am considering home educating her. Still need to get my husband on board, he doesn’t have the experience of this whole situation that I do, both in terms of what he sees of our daughter and also having done the level of research I have. I do feel I need him on board. She is very self directed in terms of how she learns and I think it could suit her. I was thinking starting with requesting flexi schooling as we’re basically already doing that anyway.

it’s not really what I wanted for her but I would rather that than have her traumatised and burnt out, so if we cannot find any educational setting suitable that’s what I want to do.

We have your back, @Corilee2806.

Hang in there.

My DGD is exactly the same (also 7) and my DD stopped sending her earlier this year. She coped with pre school and reception but struggled from Year 1 when more demands were made of her. She is now at home with a home tutor and family support and has an EHCP but is educated in a setting other than school with support from an autistic support worker and OT. She was traumatised going in. She was masking, suffering from trauma of going in and high anxiety plus ARFID so just would not eat and had autistic burnout. She has a PDA diagnosis which often means school settings don't work for children like that. She too is bright and a special school won't work for her as often there are disregulated children which are triggers for her. It is very difficult and SEN is so tricky at the moment.

I don't agree with just sending her as ignoring her anxiety could lead to severe mental health problems.

This. School (until we moved) and LA were horrendous to deal with. Refusal to Assess, tribunals, barristers, the lot! We have a masker too - makes getting help initially even harder.

Also, have you looked into Sensory OT. We found it to be the single most helpful thing we did (we were in a similar situation). Do you need to get the private diagnosis ratified by the NHS for your EHCP? We did for the equivalent in our area, and this needs a seperate assessment from an NHS recognised qualified professional. This was the Sensory OT in our case.

You might get lots of quality responses on the SEN board too if you post your question there.

Look up 'Interoception' to understand the issues with identifying emotions. Sensory OT can help with this. My masking DC has lots of sensory differences, this being one of them.

I'm 50:50 on this one still after a number of years. We will see what is still to come.

If we had not stayed firm (but with compassion) on school attendance, we and DC would be in an even bigger pickle now. Getting DC in to school and working to get needs met is at least a part-time job, sometimes full-time. In our case we had the extra pressure of having had a very thorough Ed Psych evaluation done which highlighted that home ed was not the ideal option for our DC due to being very socially driven (oh the irony!). Rock and a hard place! I guess the right response depends on OP DDs profile and current state of health/mind, as well as intentions and redources going forward. I would also highlight the value of routine for these kids. In most, but not all cases, the routine helps to hold them. If it is a good routine, it can really support them to flourish. We had a wobble last week and this week due to a one day unplanned school closure. Now there is insecurity introduced into the routine, and we have to manage that and expectations going forward.
We did (and still do!) as much sensory and emotional regulation work as possible every morning to ensure that DC is well regulated before going in to school, and after they get home. We worked with LA/school/specialists to try to get appropriate adjustments in place. It is not perfect, it never was, but it has continued to get better (with a few bumps and setbacks along the way), and we have just been through a suprisingly successful transition from primary Y6 to Y7 in a big secondary. We are pleasantly suprised at how happy and generally well regulated he is atm. Not without issues, but so far pretty manageable. I am aware that this can (and probably will) change at any moment. However, the past four years of solid work and battle to get here is at least paying off for now. There is hope!

I home educated my (very bright) DS who was later diagnosed as AuDHD and dyspraxic. School made him miserable and I just couldn’t see the point when he was only 6. He was academically ahead but refused to do the tasks which he already knew (apparently it’s an autistic thing). He also got very depressed at having to go to school each morning.

I home educated him (and his neurotypical brother) until they were 11/13. Other DS did the 11+ and got put in the top band at the local grammar (so H.E. did him no harm). He has always had lots of friends and teachers love him. Elder autistic DS went to a local private school with small class sizes at 13 then into the local grammar for A levels as he’d acclimatised to school by then.

Home educating him meant that he could learn at his pace and via his interests. We joined several local home ed groups so we did drama, PE, French and dance in groups and we usually did one play date a week. The boys had plenty of socialisation but lots of down time for reading, watching documentaries etc. Both my kids say that it was much better than school. If you can afford it, I really recommend it. At least try it for a year or so. Give her some breathing space.

Join your local home education groups on Facebook. They are full of parents who’ve been through what you and your child are going through.

EHCP

Do you have the resources (ability/time/money/space) to home ed?

It is a very big step. It's a lot easier if she is self-directed as you say, that was definitely not the case with mine at that age in that situation. Unless you count directing himself to bounce off the walls! 🤣 Not an experience any of us wants to return to (even though he continued to ask me to do so nearly every time he hit a bump in the road at primary school - we are friends with a lot of home-eders!). Interestingly, having visited extended family who home ed recently, his view to this as an option was a vociferous "Hell no!" now that he is at secondary school. He is concerned about not having the opportunity to get qualifications (I know it's possible, but would not be easy since he is still not at all academically self-directed) and missing out on peer friendships.

We did it for a year (Y2) along with a couple of days of forest school. Forest school was fab for him, home ed was hell for all of us. He continued to flexi at the forest school for a year or two while at new primary (eventually reducing down to 1 day/week). In the end the LA persuaded the tribunal to drop the forest school element, which caused him some trauma, and was really regretable, but it was the only point we lost when we took LA to tribunal. He would not have been able to attend long term anyway, because they have an age limit, but it did come to an end sooner than ideal for him.

Have you considered getting a full Ed Psych assessment? If you can afford it, this might help you work out what would be the best path for her educationally, as well as be useful when preparing the EHCP.

Do you have any other DC? This would also affect my decision whether to home ed or not.

You are your child's voice in all of this. You are the one responsible for advocating on her behalf. Pay no attention to stupid labels that others want to put on you: "anxious parent", "That mum". Who gives a damn?! You've got a job to do, and the more you do it the thicker your skin will get. For an "over sensitive" person, I am developing a hide like a rhino to "certain" criticism from "certain" directions. Being a parent of a child with ALN/SEND will do that to you!

I agree with this. My DD had tears going into school and being sick whilst at school when really overwhelmed in year 1 and 2, meltdowns after school every day. We just had go keep going with it. She struggled again in year 6, but that was after covid lock downs, so huge change in routine. She is in year 10 now and doing well.

I'd put in an application and request an urgent meeting to discuss provision they can start immediately.

Few more ideas as I see you are already engaged with school (although they are jot being helpful as they could be)

Are you writing a diary?
And on the NHS waiting list
And see if you can self refer to OT
Does your local authority have an advocacy service. I found mine did.

And don't worry what the school think about you pestering them. Once my dd got the secondary, the SENCo said she didn't mind if I contacted her every day if I had too. The contrast to primary school was astonishing. (Still no EHCP but I didn't appeal as all the provision she needs is in place - finally)

Wow, thanks to you all for the thoughtful replies, I am reading them all and lots to consider. Just doing bedtime and will come back later but a few quick things

• the school seem to have decided now that this is behavioural/control related. It was the SENCO’s day today and she even saw us struggling at the gate but no comments or help, or reply to my email so the ISP remains as a theoretical draft - she now won’t be in again til next week. So i can’t keep in touch with her. There’s been a real change in tone.
• do I still need to get on the NHS waiting list? Is there likely to be an issue with her private diagnosis being recognised by the LA?

This sounds so similar to my daughter, we also suspect ARFID although not diagnosed yet. She eats the same thing every day, limited selection of safe foods which we cannot get her to expand (we’ve really tried!) and she was losing weight earlier in the year when in burnout as she was hardly eating. It’s a bit better now in that she hasn’t lost her appetite but she’s dropping off the weight chart - she’s always been tiny and I do worry, that was a source of anxiety in her last school as children were mean to her about it.

Yes we think interoception challenges and alexithymia are both part of her profile that cause some of her challenges. Have an OT sensory assessment booked in next month which I will be really enlightening - my son had one a year ago and it was the most useful insight we’ve got into his profile so far (he’s younger but sensory issues a big thing for both of them)