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What if she can hide it so well

(9 Posts)
sweetteamum Thu 20-Sep-12 14:35:27

DD 11, (un dx'd asd), Dyslexia & Language Delay (more than 2 deviations from the mean).

Anyway, i'm concerned she's learned her behaviours so well over the years, that it's not going to be recognised enough, for her to get a diagnosis. At home she's very obviously asd yet when in her different situations, she adapts

CAMHS & Community Paed think there's definitely cause for me thinking this - as they think it too - but the school say she's coping really well hmm which, i'm sure if they give her some more time that she'll come undone, and the Ed Psych also made a passing comment. The lady from CAMHS actually said I didn't really need to record things at home as she saw the same things but I still feel like I need to back it up.

I feel like they all think i'm just an over anxious mum who needs to cut the apron strings a bit. But, I really am not. I' love her to be independent etc but she's not ready for it.

I'm havin a really off day and feel the world is against me. Sorry sad

porridgelover Thu 20-Sep-12 15:38:22

Hugs....
I know what you mean as I am currently looking at my DD in the same light.
Also feeling that what I see at home is so not consistent with how she acts in school etc. The cost of the fabulous behaviour at school is that, she comes home and crashes and has appalling behaviour at times.
I am not a bad mum.

I dont agree with the lady from CAMHS. I started using a spare diary to write stuff down recently and when its in black and white, its even more glaring to me IYKWIM. Would you try that?

spiritsam Thu 20-Sep-12 15:44:38

Hi i have DD of 4 recent dx of Autism alongside other things . Girls are able to mask things and fit in, they are harder to dx. Push for assessment you are the only one who will fight for your child . Also they can save the meltdowns for where they feel comfortable . Hope that helps a bit x

nothinginthefridge Thu 20-Sep-12 16:20:11

I know exactly where you are coming from as I am in exactly the same position with DS2 (12). SLI, Dyspraxia etc. I have asked for an ASD assessment of some sort. DS' paed, CAHMS and ed psych have also agreed that it should be looked at but school do not think so.

The paed made an interesting comment to me. "You have some still unanswered questions about whether he is on the spectrum, it's our job to give you the answers" Simple as that really. She was happy to refer him.

Fortunately the ed psych has also taken no notice of the school's comments and is coming around next week to fill in all the forms to get the ball rolling.

I explained to the ed psych that if my DS had symptoms of some sort of physical illness, would we not test for everything that it could possibly be with the hope of finding some answers?

I also said that as time progresses on, particularly as he left school and went into FE, I would always wonder whether he was on the spectrum and would regret not getting him tested.

Your DD is 11, the process can take up to 2 years in some places, by that time she will be 13 and deeply into the secondary school options choosing, exams etc. You need to get the ball rolling now imho.

I have also felt like an anxious mum but have now got my cast iron knickers on and don't give a thought to what the profs think. I am now very forthright in asking for what I want and will not stop until I get it grin

Ineedalife Thu 20-Sep-12 16:27:25

The trouble is many teachers have had no training in ASD so they often have no idea what to look for.

A very experienced teacher once said to me the she new nothing about Aspergers and have never read anything about it. Scary!!

My Dd3 would have been in her class this year if she had stayed at her old school, Even Scarier!!

My Dd3 is very very good at coming up with coping strategies but a few chats with the teacher and SENCO at the school she is at now have helped them to see when she is struggling and then they can step in.

After school one refusing to acknowledge her difficulties in any way she had been at school 2 for less than half a term before the SENCO and CT said to me "She sooo needs a diagnosis!"

Sadly you cant make people do extra reading or even take on board what you say, all you can do is keep the ball rolling at CAMHS and keep nagging the school.

Triggles Thu 20-Sep-12 17:13:12

A lot of times the teachers don't know what to look for, unless it is OTT disruptive behaviour. DS2 has a number of tics and "tells" that are definite indicators that he is getting stressed. Admittedly, he doesn't hold back during the school day either - he will fall apart/meltdown anywhere at all. But still, if you know what to look for, you can see specific behaviours start appearing and getting more frequent as his stress levels go up and up. (for example, blinking and winking, wrinkling nose repeatedly, running hands across his head in his hair, shaking his head back and forth, "signing" with his hand in the air)

Does your DD have any tics or tells that signal she is stressed? Anything the teachers can be looking for to see if they can tell when she is struggling to cope that might not be obvious in a normally busy classroom?

sweetteamum Fri 21-Sep-12 04:34:49

Thank you all so much for replying (I lost the thread) blush

I dont agree with the lady from CAMHS. I started using a spare diary to write stuff down recently and when its in black and white, its even more glaring to me IYKWIM. Would you try that?

Sorry blush, I meant recording her on my phone. I do keep a diary too but I feel like going in to school and playing all the recordings and saying . . YOU SEE!! DD IS STRUGGLING SO PLEASE HELP HER. .

The paed made an interesting comment to me. "You have some still unanswered questions about whether he is on the spectrum, it's our job to give you the answers"

I had that same comment, only yesterday. It's really true and I need to start remembering that.

I explained to the ed psych that if my DS had symptoms of some sort of physical illness, would we not test for everything that it could possibly be with the hope of finding some answers?

I will be adding this to my list of "Lines I can use when having to justify things to people" grin

A very experienced teacher once said to me the she new nothing about Aspergers and have never read anything about it. Scary!!

OMG shock

Sadly you cant make people do extra reading or even take on board what you say, all you can do is keep the ball rolling at CAMHS and keep nagging the school.

Yes, thank you. I'm certainly doing that smile

Does your DD have any tics or tells that signal she is stressed?

She mostly goes from 0-rage in a matter of seconds. However, she pulls/picks at her head, twirls her hair and i've noticed she does also put the cuffs off her jumper into her mouth.

joencaitlinsmum Fri 21-Sep-12 14:39:36

I work in school and know and see what training teachers and TA's in main stream schools get to support children with SEN - NEXT TO NOTHING!! especially for children with ASD so no wonder they "dont notice anything is wrong" espcially with children who learn to adapt.

My GP didnt have much clue either when I first approached her but luckily she took me seriously and did a referral.

I know when my DS has been anxious at school (most days!) as I have to replace his jumpers where he has bitten the sleeves to bits, his fingers are red raw and bleeding and his pencil case is full of chewed rubbers and pens.

I dont think ed psych's know much about ASD either going by personal experiences unless a child is physically distruptive they think all is ok, I still think Mums are a child's best advocate if only people would listen.

sweetteamum Fri 21-Sep-12 15:34:06

Thanks Joe - I think thats a good point. They all have an opinion of this child, who is a delight to teach, loves following the rules and is not disruptive. Why can't they just hold their hands up and say 'I'm sorry, this is out of my area. However, you are mum and all these pro's wouldn't be involved if it was a case of over-anxious mum'

Anyway, I had a call off another EP, who I first spoke to last year. It seems the others are off sick and we've just been left - again!! Although, he did say that he knew we'd applied for SA/Statement as he's caught up on all the recent reports.(I hadn't told anyone there). Turns out, he said he's going to fully support our application - to say i'm stunned is an understatement shock but i'm not holding any hope out that they'll agree!

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