I have an idea (ASD and masking at school). Can I run it by you please?

[DishwasherDogs]

I am by no means an expert in any of this, apart from being the mother of a 9 yr old who is on the autistic spectrum and having to work out the best ways to help him.

This idea is following on from the thread in AIBU about AS and girls.

In the past few months I have read loads of threads on the SN boards that highlight a problem between parents and schools, more often primary schools. I get the impression that unless a child is struggling within school time, teachers can be very sceptical of the need to support and help some children, despite input from parents.

I include my ds in this - he looks fine at school, no-one can see an issue, but he comes home and goes to pieces and has significant problems.

I'd quite like to put together some sort of online document that could be used as a resource for teachers to learn what they can do to help children who mask their feelings. I'd like this to include experiences from parents, and possibly from experts as well, maybe some quotes from OTs, SALTs and others.

This may be the crappest of crap ideas, and I'm happy to be told so, or pointed to the direction of such a document if it exists (because I could really do with it right now!)

I don't want it to be a MN thread, much as I love MN I don't think it would be taken seriously by SENCOs or teachers.

Do you think this is an idea that could be helpful? Do you think it could work?

My family's experience of ASD so far has been made immeasurably easier because of these boards and the experienced posters on them, happy to share their knowledge, but the biggest thorn in our side has been school's refusal to see any issue, despite video and voice recorded evidence. I have had to fight for the smallest allowances, which makes an already stressful situation much worse, and I'd like to see if I can do something to make this an easier part of the process for children and their families.

I apologise if this is something that someone else has already done, or is working on.
I'm kind of thinking aloud starting this thread :)

You are preaching to the converted here! I am having the same problem. DC2 gets loads of support because of an early ASD diagnosis and a language and communication delay. Teachers can see the issues there. DC1 is really struggling but because he is very bright and masks it in school, nobody can see the problem.

I wonder why some children are able to mask and other's aren't?
DS has never masked, he is the same everywhere. Do they learn to mask as they get older or is just that some do it and some don't?

I don't know fairgame, but I have been told on here that ds possibly presents like a girl, he's very sociable and wants to be with people.
I've seen him in action at school and you would have to know him very we'll indeed to spot and signs of discomfort/anxiety/stress, so obviously a teacher who doesn't need to see it can't.
He seems to be able to slot himself into a situation (if he chooses to) and blend into the group, although it takes a lot out of him. If I try to enforce a situation, he backs out and isolates himself.

I have no idea why some children do it and some don't

Fair game I wonder the same as you dd2 aged 5 has never masked in her life , she does however have classic autism not aspergers

My dd2 definitely has anxiety , she just expresses it in meltdowns at thevtime

Zzzz masking is a term commonly used , my dd is in a totally inclusive environment yet still displays some challenging behaviours and I wonder why she lets it out whilst other children hold it in

Masking perfectly describes ds. Every morning before going into school he has a quiet few seconds where you can see him mentally preparing himself for the day ahead.
It is almost as obvious as physically putting a mask on.

I know that we know very little about ASD, and I'm sure I know less than most, but I'd like to think that there will be a time where schools have to acknowledge that parents know their children more than their teachers do.

To go by your football example, I know exactly why ds won't (metaphorically) play football after school, and I know how he could be included more successfully. I don't know why your ds won't play, and I would never assume I knew more than you about his reasons, which is precisely what some schools do.

Although we do seem to be making some headway with school, it has been quite a battle because they prefer to take the word of an expert who has been in the job for a year and who has a very broad, stereotypical view of ASD, over my word, when I live with ds and have had to work out his triggers and how to calm him down and how to help him when it all gets too much. They see nothing of this at school, but then presume that they know how to get the best out of him. That's what needs to change. But how?

Interesting question. I was able to mask at primary school, and to some extent at senior school. Although I eventually left due to bullying.

6yo DD masks like a pro at school and let's it all out at home. Although things are made harder because the paed refused to accept she had any issues and said my ASD has caused her problems. It couldn't possibly be genetics .

However, may have a trump card to play yet. DD's head said she was fine, when I mentioned I struggled at school she said I was clearly doing well and I shouldn't worry. Wonder what she'd say if I went in with my diagnosis and pointed out we can all appear 'fine' but still have difficulties .

Having said that I think it becomes easier to have ASD in middle age, no one bats an eyelid if you're an intoverted bugger .

Sorry for typos, I'm walking home from work!

That took me about twenty minutes to type out and post

Adapt fits well too, he does adapt most of the time, but unfortunately he is volcano like and can be dangerous.

Isn't there a quote that goes "If you've met one child with ASD, you've met one child with ASD"?
I've found that people expect ASD to be the same in each child or adult, they simply won't accept that it comes in different shapes and sizes.

I'm finding this discussion fascinating , I've just realised my son aged 9 with hfa doesn't mask either ,

Polter as ever I completely agree with you, I'm not saying at all masking doesn't happen , as was said up thread if you've met one Child with asd you be met one child. I have to say although there is clearly a huge difference in cognitive ability I see similarities between your ds and my dd2

I've learnt something her as I always assumed that all dc would mask to a certain extent. Interesting how different all our children are :)

Polter, I can feel myself mask too, some days it's harder than others, but I always have to mentally prepare myself.

Dishwasher , in the case of my 5 year she probably has some level of learning difficulty with the autism so she is like a 2 year old , so she doesn't care how she appears , my 9 year old son however I have no explanation for

So do any of you think there is a place or use for some sort of collaborated document, or is ASD far too diverse for it to be workable?

Masking is probably too general, but maybe it would be worth trying to pull together some sort of resource to get schools to understand how knowledgeable parents are about their child, and how helpful they could be, which in turn would hopefully make the lives of children with ASD easier.

My son masks.
Partly because he was so terrified at school he didn't dare not, iyswim?
He comes home and it all comes out.
School don't believe us, cahms don't believe us.
I wish he didn't mask so well :(