Waiting for assessment, but things seem better

[Devonmaid1844]

My little boy whose now 6.5 had a really tough year at school last year, with meltdowns several times a day when he was throwing chairs, being violent and having to be removed into a 'calm down room'. We would also see this behaviour at home, alongside other concerns such as he developed physical and verbal tics, he still has problems toileting, he struggles completing tasks and zones out when in conversation.
These continued over the summer with us and we decided to ask for a referral, we had the details back and it was 4 years locally for CAMHS and 2 years for the recommended right to choose provider. So we decided to pay the £3K for the private referral, which we really didn't have but didn't want him to absolutely hate school by the time he got more support, and it just felt like it couldn't continue with him being lifted out of the classroom multiple times a day to kick off in what was essentially an empty cupboard.
However this year so far has been like night and day, he's only had a handful of meltdowns at home and school. He's still having problems toileting, zoning out, and managing his emotions when playing with others, but seems to be a lot more settled. We've only had one serious meltdown at home, which was when he was already a little unsettled and he found his sister's leggings in his drawer and because they weren't in the right place this led to about 45 minutes of screaming, throwing items and rolling around on the floor.
I don't know if we jumped the gun on the assessment or if we're better at managing him, for instance we've introduced an hour long bath every evening for him which seems to really settle him and help with his very poor sleep.
Would really value any wisdom!

There is a book called Qigong for children with autism by Louise Silva. It's a massage you do on ASD children. I started this on my DD 4 months ago , she no longer has meltdowns, is toilet trained , sleeping well , understanding more. Give it a go. It's a miracle

Improved understanding leads to better management of difficulties as a result of autism. We've seen similar - dd has 'blips' but nowhere near as bad as when she was aged 6 and went through a period of school avoidance. Essentially, you are now better equipped to understand and help your son manage the things he finds most difficult. You've not jumped the gun. Autism doesn't go away, as I'm sure you're aware, but behaviour can wax and wane throughout life. You were absolutely right to get him assessed. A diagnosis isn't a cure, but it does tend to help others understand that there's a real disability there. We paid for 14yo ds to have an adhd assessment when he began struggling at school. Until we had the diagnosis, the school were treating him like any other child - despite us raising concerns and asking for support. Different story now he has a formal diagnosis.

This sounds amazing. I'm buying it right now! Thanks for the tip

Thank you, and this gives me hope about managing it. Our big concern was school as they were just expecting him to be like the other kids and we could manage at home by giving extra warnings about transitions, making sure he eats his snacks and food, because he doesn't notice he's hungry, etc. but they were just having multiple meltdowns a day. He was almost asked to leave after school club because of his behaviour, but luckily one of the kind people noticed he was absolutely fine if they made him eat in a calm part of the building before he was allowed to play or interact with anyone and that just turned it all around for him.

I'm really hoping that once we have details for them about the type of support he needs be won't go back to the place he was in, which was just not good for anyone.

@Devonmaid1844 does he have an ehcp in place?

No, essentially school have said everything is fine and he just finds being at school a challenge but when he accepts the rules he'll settle and be happier. We had discussed CAMHS referral with them and they said it wasn't needed until he turned 7, we decided to go straight to the GP as a friend who went through it said not to wait because of wait times.

I'm not even sure where to start with an EHCP but thought that came after an assessment?

*Edited to add the bit about CAMHS

@Devonmaid1844 EHCPs are needs based, not diagnosis based. We got one in place without a diagnosis. The legal threshold for the LA agreeing to an EHCP needs assessment is a low bar: Has or may have SEN and may need additional provisions to be made.

Ultimately, if you believe the school have a good handle on his needs then one may not be needed. But your paraphrasing of what the school have said has raised a red flag for me. It's quite a common assertion schools make, and many actively discourage parents from applying for EHCPs. In your case, I'd be concerned that without a thorough understanding of your son's needs, they are likely not to deliver the right support/ be held accountable for delivering it.

Neurodivergent children can struggle more at certain points in their educational journey. For example, many fall apart during transition to secondary school. Getting a needs assessment accepted opens up access to an educational psychologist to facilitate a thorough understanding of needs. And getting that EHCP can potentially open doors to alternative educational provision if existing arrangements begin to fail.

The government is considering changing the threshold/ access to EHCPs, so it's worth considering whether you want/ need to get one in place before any changes come in.

On their website, IPSEA has a model letter you can use to request an EHCNA.

EHCPs are separate from the diagnostic process. You don’t need to wait for a diagnostic assessment to request an EHCNA. For an EHCNA you need to show a) has or may have SEN, and b) may need special educational provision to be made via an EHCP.

Thank you @Whatafustercluck and @flawlessflipper will 100% look at this properly tonight. In a lot of ways I think the school have handled it well and particularly he still has great relationships with his teachers which has been comforting... But they've very much discouraged any conversations about additional support or assessments, instead saying he'll get used to school eventually, which was part of the reason we went for the private assessment as I thought it was the only way to get them to take it a bit more seriously.

Thank you! Super helpful

Things improving are irrelevant as to whether he has ASD or not, kids with ASD can improve just like any other child. It's clear you've put in all sorts of things yourselves that are enabling him to cope better - so a large part of it will be your great parenting! He is also that little bit older as well.

It's great that he's more settled this year at school but it might be that he just really struggled with play based reception class and finds the more structured yr1 set up much easier. The classroom might be a lot calmer and the teaching style might suit him more, if he is autistic it's probably not that surprising.

I don't think you jumped the gun at all. Make sure you keep a note of all the behaviours you've noticed with specific examples and everything you've put in place to help him cope. You think you won't forget but you often do and these things will be useful for assessment. Things like his sisters leggings in his drawer are very telling IMO.

DS got to 10 years old without any teacher ever suspecting or suggesting there might be any issues with him, he was bright and well behaved and they thought he was absolutely fine.

Schools often think bad behaviour is down to parenting issues, spoilt child, no boundaries at home etc Throwing chairs and being carried out of class to calm down is not normal. Saying he'll get used to school eventually is really not helpful IMO.

I would also continue on the road to NHS diagnosis as well as having the private diagnosis.

Thank you! That resonates a lot as we had multiple meetings saying we needed to have stricter boundaries and I kept having to explain that the home life they were imagining was not reflective of our relatively strict house (minimal screen time, routine heavy) because at home we find that helps with his behaviour!

The GP didn't discuss paying for the assessment as we hadn't realised the right to choose would take so long, but had discussed once we had a right to choose assessment they'll immediately re-refer to CAMHS for the ongoing support and it'll be a shorter wait time, so hoping to go down that route as we've used the right to choose provider recommended by the GP.

Genuine huge thanks to everyone - clearly I'm not hoping my DS has ADHD/autism, but it felt as clear as the nose on my face over summer due to all the behaviour and my family history... But over the last few weeks I'd just felt maybe I'd paid £3K to be told it was really just poor parenting/ something he had to grow out of. At least I don't feel crazy to have gone down this route now, no matter the outcome! And I've ordered the book and currently researching our local EHCP routes for self-referral to get some other bits of support on the go

Request another meeting with the SENCO. They should be providing support now.

IPSEA and SOSSEN are helpful starting points for understanding the EHCP process. Also, the SENCOP. Despite what some LAs try to claim, the process and law are the same in all LAs.