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.

Or does this already exist?

Same here mindreader

To me masking suggests the action is conscious and deliberate whereas there is an automatic inability (physiological rather than psychological) to even speak in some environments and social situations.

DS1 started school at an Indi with a separate small reception and did not 'mask'. We moved him at the end of the year because the rest of the school was huge. As soon as he started at a village state school he was overwhelmed. It was not conscious or deliberate. But even in school my presence changes the environment as long as no one addresses him directly. I was viewing his work after school one day and he was talking nonstop as usual. He had not noticed the CT in the room. She expressed her shock as she had very rarely heard him speak in months.

DS2 never masks. I see it as a HFA -v- AS but this is only on the tiny sample of my boys . DS1 is a classic Jekyll and Hyde - sometimes he can control it more than others and then the masking is a factor but not always. Physiology and psychology rather than one or the other but with a much reduced role for psychology

But it is not just about environment per se but also individual response to environment - under/over sensitive.

Environment and response to it can be modified explicitly and deliberately provided we don't have a focus on innate or psychologically achieved resilience.

I don't think ds masks deliberately, it's more a reaction to what's going on at the time.
It's firmly on at school, less so in other situations and not at all at home.

Perhaps masking is a conscious but taken for granted coping mechanism. I need to know in advance so that I can mentally prepare. Once prepared I can cope with uncertainty but I would struggle to deal with the everyday if I did not have sufficient time to mentally prepare. Maybe I only learned to do this because I had experienced being over-whelmed (and mute) when faced with the unexpected.

Stress is physiological to my mind - I read an excellent book about 20 years ago called 'why zebras don't get ulcers' that explained the relationship between stress response and inability to speak. Basically - fight or flight hormones shut down non-essential functions like speech.

You're right Polter. I bought school a very good book (one I think you recommended). I don't think they've even touched it.
A reading list sounds good though.
And reward stickers as incentives to read them :o

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 :(

Learning to mask her difficulties was the absolute worst thing that ever happened to Dd3,

She like mindreaders Ds learned because she was frightened to be herself at school

She struggled from the very first full day at primary school, she had never masked at Pre-school and by the xmas of reception she had learned to hold her agony, anxiety, fear in side until she saw me.

Of course the teachers regularly saw her melting down in the playground but they assumed that it must be my poor parenting that caused it.

She was 9 before she got her diagnosis and she continues to mask even now, although she has begun to allow the real her to pop out every now and then at her new school, which is great for her.

:o Golden time :o

Interesting that you mention freezing, when ds is scared he freezes. He doesn't become unable to do anything, but is very quiet, passive and ultra well behaved. When Dh had his stroke nearly 2 years ago, family were very impressed how well ds was coping, but with hindsight he wasn't coping at all, he was terrified but didn't know how to deal with it.
He did the same when my dm had a suspected stroke this year.

Yy to the 'ultra well behaved'.
My ds is like a robot at school.
Every single teacher says they wish all the boys were like him.
He loathes them and is terrified of them.
BUT - he doesn't cause them 'any trouble' and that is all they care about.

Our school Senco and behaviourist don't believe in masking and claim they never miss any child who has genuine additional needs except my friend's 9 yo

Therefore I have accepted that DS will never get help/support from his school and is likely to remain unhappy and anxious for the rest of his school days. Daily stomach aches and lacknof sleep and nightmares have lasted ALL term so far. That is because I am a terrible poor parent according to school. But they can't explain my two school aged daughters who are beautiful behaved and NOT anxious at school

I am no longer asking for support, I am concentrating on what I can do to help him at home.

I do agree it would be good for all schools to be properly educated in masking issues.

Thanks Polter, I hope you are right.

babies so far we have had a positive experience of secondary school too.

Dd3 slipped through the net at primary despite having a dx!
She is coping much better at secondary and the staff are alot better at supporting her whether she is showing signs of any issues or not. Her primary always just assumed she was "fine"

Babies, that sounds a bit like ds's experience at the moment.
People have heard of masking, but still expect ds to show obvious signs of distress, which he doesn't.
When he does slip up occasionally, it's naughtiness and he's punished, even though the things he's doing are sure stress signals, but apparently he's doing it to deliberately derail a lesson.

We've been seriously considering moving schools, until Friday when I sent yet another email, but this time I begged for them to try to understand (I was actually crying as I wrote it ), and it might have worked, the SENCO has agreed to try the two things I've been asking for in the next term and see how it goes.

I hope it works.
I might collect some info myself about masking and print it out and give it to every teacher who has contact with ds, hopefully it'll make a difference rather than them see him as a spoilt naughty boy.