Not sure how to get support for ds - masking in school.

[PhilPhilConnors]

Ds has HFA/PDA.
I spoke to Ds's head teacher this morning, as we're still having loads of anger and meltdowns at home following school, and got what I feel are some very unsatisfactory answers.
In school O completely masks, comes across as NT (although can be rude).
Academically he's doing ok.
He gets on with his teacher as she's generally PDA friendly, tries to get the best out do all the children. He doesn't like it when he's told off and will be angry at home most evenings, and it will be difficult to understand what it is about as from the teachers' point of view, the day will have gone fine.
He has problems with certain teachers, not sure why exactly, maybe they are a little stricter, not as familiar, speak in a way that he takes offence at, but won't show any signs of this at school, but melts down at home.
The HT says they need to carry on as they are as this will help him learn that he has to do as he's told, particularly as he will start secondary next year, and no-one will take the time to word things differently, or take a different approach.
I feel that certain strategies, different ways of wording things (strategies that we've found in the PDA resource website), need to be put into place so that he doesn't feel as anxious.
We know at home he only learns to do as he's told when demands are stripped away and he is allowed some control. At school things tend to build up until he's more suicidal and making threats against those he dislikes.
Because no-one in school can see any behaviour, and he is unable to tell them how he feels, even when 1:1, they don't think he needs support.
So what do I do?

(If you've seen this post somewhere else, it's because I'm trying to get as many thoughts as possible, we're so worried about ds, as masking isn't the same as coping, but no-one in a position to help will listen!)

I often wonder why some children mask and others don't.
With ds, he can't physically show people (by behaviour or telling them) how he's feeling, it's not a deliberate thing he can turn off and on.

I also saw something on fb recently. When 'they' use the "they're fine" line, you could try stating that when they've had an argument with whoever, are in a bad mood, have pmt, or merely don't like their co-workers or boss, do they actually show it to others ie our children, or do they mask in school and get on with the day, until they can release at home?

Why do these people expect our children to be capable of more than adults would be capable of, in a similar situation?!?! Gets on my nerves.

That's a good idea Mrs, I'll do that, thanks!

I have had a school that never believed me. Really awful. You have my every sympathy.

I really wish you lots of luck. It's very difficult for those of us with 'high functioning' children - that term is very misleading, yet our children can actually be much more complex than a 'lower functioning' child.

Yes, I think they want ds to blow up in school so they know what they're dealing with.
I think his signs are definitely there, but difficult to spot, and in a classroom, if he's not needing lots of attention, they're not going to see it.

Thank you

Shady, has a letter to the MP helped?

There's some interesting stuff on this page, particularly that children are likely to fall behind academically (or behind their own potential anyway) and the other bit further down about potential signs they're not coping. I feel like compiling a list and distributing it!

Nice, that's brilliant, thanks.
I've C&P'd part of a post and added it to my epic letter!

The HT is either going to find the information thought provoking or she's going to think I'm an absolute pain in the arse!

I suspect the latter
Ds is worth it though.

If it's the latter, you're doing a good job as a mum and advocate

I only sent it on Friday, so will wait in anticipation for his response!

I found that link helpful Nice, my daughter has traits of PDA but not enough to diagnose. Sometimes though her demand avoidant features are the reason for her meltdowns, they escalate very quickly. She's had an awful week this week, lots of anger and violence and explosions.

There's something seriously wrong with the school system for children like ours.

Just seen this.

Did lol at needing him to explode at school - that was exactly how my DS got help. I did have to do lots of priming talking through that it's ok to let school know he's angry.

I think that it's a case of keep on providing evidence to them and if you can provide evidence of meltdown. I never wanted to betray my DS but what I did was set the voice recorder on iPhone for a pick up. It recorded his reaction in the car - the sudden change and the things he was telling me about. I decided as it was to get him support it wasn't unethical to do it.

Youaren't, not long ago I voice recorded a journey home where I had to stop three times due to him lashing out. I played it to the HT who looked unmoved. I suspect it added to her opinion that it is home that's the problem (after all, he's fine at school ) rather than ASD being the problem.

I can't say that things are perfect at home, but we are getting better at spotting things and dealing with things. I can't shake the feeling that things would be much easier if he was less anxious at school.

He is happy there, we moved a year ago, at the old school he was regularly school refusing, having more and more outbursts (that still looked naughty rather than autistic, and definitely no violence).

You can't shake the feeling because it's true.
I had a similar conversation with DS HT before half term. I said when his needs are met in school he comes home relaxed. When they aren't his anxiety levels slowly increase until he has a meltdown. I said I knew from home behaviours his needs weren't being met. I could see him heading for a fall. I got nods of agreement - you know the ones?!
The very next day he had a meltdown in a lesson and bolted from class.

I sat on my hands as not to send a "I told you so as I can spot the signs" email!

It's like they think they know our children better than we do!

In a way I would like him to blow up at school, but I can't encourage him as Sod's law he'd say "Mummy told me to". I do say that it's ok to let people know how he's feeling, but he says he can't in school.

I can spot as soon as he comes out what sort of night we're going to have. At the old school other parents could spot it too, but funnily enough teachers never could.

I've offered to go through his signals, but think it makes me seem neurotic, as they are normal child behaviour, but in ds it means more. He goes still, or he starts getting frustrated, rolling his eyes. Demand avoidance takes the shape of saying he can't do it, being rude, engaging other children to chat and pull funny faces to rather than working or listening (good lord, a child with ASD is engaging other children, surely that doesn't happen!). His eyes go red underneath (sure sign of meltdown ahead), he can sometimes talk in a funny voice, but I've seen him go round to every child and teacher in the playground saying things in this voice and no-one bats an eyelid.

It's really difficult isn't it!

I sent the letter. Fingers crossed it works this time.

Frustrated update:
Letter sent, no response as yet. Not going to push it right now as I've got a meeting with specialist services next week, and will give her a copy of the letters I've sent and see what happens from there.
Contacted SOSSEN (who were brilliant) who advised me to contact an independent ed psych who could help put things into place and also support if we decide to go for an EHCP. Contacted one today, and have just had a reply that as ds masks in school and doesn't show any behaviours the LA won't support anything so they can't help.
I've emailed the psych we saw and hope she can recommend someone.
It's so bloody frustrating.

Thanks Polter :)
I was worried that this might be a typical response.
I can completely recommend SOSSEN, the lady I spoke to was brilliant, really knew her stuff and explained loads to me.

I had a really productive day, and this has really knocked me.

OP

I'm in almost the exact same position as you. I have my thread here.

I'm so worn down, we can't take much more

Why are our dc left to suffer?

I read your thread frazzled.
It's shocking.
I really feel now that no-one gives a shit about children that cover up their feelings.
It doesn't matter how many times I tell them what he's struggling with, offer to provide evidence, it hasn't made a jot of difference. They don't care.
Emotional well being? No, not important apparently.
Mental health? Ditto.
A tiny bit of understanding and a few little tweaks could make the world of difference for ds and others, but no, he's "fine" so no-ones going to do anything.

Sounds like a terrible EP!! . Do you think someone would go in to assess and pick up any 'subtle' behaviours - more a behaviour specialist?

The diagnosing psych has recommended someone who is experienced with PDA, I've sent her an email.
Fingers crossed!