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Advice please. WWYD?

(20 Posts)
HarrietJones Wed 29-Jun-11 19:57:10

We've been having some problems with dd2. Over the last couple of years she's become v anxious and obsessive mainly in/around school holidays. If she wears a watch she is obsessed with what time it is/is she late.
She is a collector and loves to have a whole set of things.
She gets upset if she thinks she is in trouble ( teacher asks her to stop talking etc). This is the only problem school report.also overly emotional about falling other etc(perceived failure)
She is v popular at school but will go off and play on her own if she wants to play something different( leader rather than follower)
She has had language & speech problems probably linked to severe glue ear/hearing loss as a toddler. She went through a phase of screaming & head banging.
She has v limited diet. She was seen by a dietician and made dramatic improvement earlier this year And then when she was discharged did a U turn again.
She has a best friend and they are glued together but said friend was blanked for 20 mins during Scooby Doo

Sorry all a bit random but I'm losing my train of thought.

HarrietJones Wed 29-Jun-11 20:00:20

She hides if she thinks she is in trouble/is told off.
She is top/ near the top of the class in most subjects.in reception she was at the bottom and she jumped up to the top practically overnight

Dh/I/xh/xh family all have extensive experience in SN and none of us think she is Autistic. But when I describe her she sounds it. Does it to you?

TotalChaos Wed 29-Jun-11 20:34:29

might be worth getting her hearing checked again? and do some reading around girls and aspergers, as girls can present more subtly. Then decide whether to talk to teacher, watch and wait, or go to GP about it right now.

HarrietJones Wed 29-Jun-11 20:39:23

I've read the stuff after a thread on here the other day. She ticks a lot of boxes. As do I.

Hearing is checked regularly but as it's intermittently iffy its never been properly diagnosed.

I've been talking to school/school nurse for a while. She is lying a lot and sticks to the lie whatever we prove otherwise. She also 'alters' rules/ instructions to what she thinks rather than what we said.

HarrietJones Wed 29-Jun-11 20:41:12

We are waiting for a referral to what appeals to be CAMHS litehmm.

Would it even help if we did have a diagnosis? We treat the behaviour as such anyway.

TotalChaos Wed 29-Jun-11 20:49:40

would probably help school deal with her more sensitively, and might help with transition to high school. might also help her feel better about herself too, if she can see herself as part of a group of people like her iyswim.

HarrietJones Wed 29-Jun-11 20:55:09

She doesnt seem to see there is a problem.V confident, is fine when she is in a routine (chool/holiday clubs) or when there is nothing happening. its the transition stuff that mkes her anxious (thats my weak point too-holidays!)

BlackL Wed 29-Jun-11 21:12:36

maybe a visual timetable at home would help? ds1 works with one as he was always anxious about what was happening next, he wouldnt focus for worring about what was happening next. Its works great for him. School are using it for all the kids in his class now and its really settled him. Might be good to write the times down and she can tell shes not late.

utah Wed 29-Jun-11 21:14:57

I have been facing this for the last 7 years with my son the salt and school believed he may be AS/HFA when he was 4 to 5. He is intelligent and TBH only really needs help with socially aspects and changes in routine. My son knows he is different and as his brother has autism he may even know he is. But he would be horrified to have a DX, he has from the age of 6 wanted to be a CSI or other various jobs all connected to the police. So I have always refused assessment, he is now in secondary school and still has his quirks but if ever the anxiety became severe then I would take action. The most annoying part is gauging his feelings as he does answer in what he thinks the answer should be. Myself and OH have constant talks are we doing the right thing. I guess we will never know and have to go on gut instinct. It is the same about when to tell him if we do. Yes holidays are a nightmare as he likes to have a timetable and it is all about time what time do we go and how long will we be there, what time is lunch etc,etc.

r3dh3d Wed 29-Jun-11 21:20:31

The thing that has become more and more clear to me over the last few years is that lots of conditions are co-morbid, and a lot of kids have a bit of x and a bit of y and a bit of z. It's hell to diagnose, partly because diagnosis is based on ticking one set of boxes on a questionnaire, you start ticking boxes all over the place and you end up with no diagnosis rather than several, and also because you can have traits of x and traits of y and traits of z and none of them are quite enough for formal diagnosis but the whole is greater than the sum of its parts. I get the impression that's particularly true of kids with late/mild/high-functioning presentation.

What I am trying to say is - heaven knows I know nothing about this, but could it be Aspie traits plus something else? At least for me that would explain why she is ticking Aspie boxes on paper but you and your family (with experience) feel it is "different" in kind. That would be something valid to explore with CAMHS; ime a lot of the questionnaires they use are actually for differential diagnosis so they should be pretty well equipped to have that conversation, and it would give you more tools to manage the behaviour if you see another angle to it than just ASD.

HarrietJones Wed 29-Jun-11 21:48:28

r3dh3d- that makes sense to me

We have used calenders etc but found it easier on all to not tell her until its time to get ready. otherwise we end up with coat & shoeson the door step at 7am !

utah- dd is very ambitious andI believe a diagnosis would stop her chosen career.

cheesetoastie Thu 30-Jun-11 06:52:46

She sounds a lot like my ds who has just been through a CAMHS assessment and a set of sessions with a counsellor. Their opinion is that ds has unusual ways of behaving due to his hearing impairment. He is having help from school and CAMHS mainly tryingto increase his self-esteem and confidence.

cheesetoastie Thu 30-Jun-11 06:57:32

Ought to say the original opinion from the CAHMS assessment was aspergers but after he had his 1 to 1 sessions they decided that the behaviours were not 'organic' but due to the hearing loss. We went to CAMHS originally as his anxiety got so bad he tried to harm himself.

purplepidjin Thu 30-Jun-11 07:32:01

I don't know what to suggest except to push for statutory assessment if you think her learning needs extra support.

Have let Marne know about this thread, she's experienced with girls and ASD <wracks brains for other people with girls...>

Marne Thu 30-Jun-11 08:41:31

OP, you have just described my dd1 grin, she gets very anxious, hates being told of at school (will dwel on it for days), hates falling over and hurting herself (really upsets her) and hates to fail anything. Most of her anxiety comes out at bed time which makes it hard for her to get too sleep, we use sticky notes to write down all the good things she has done during the day and we stick them next to her bed so when she feels anxious or sad she can see all the great things she has done, we also use worry dolls (which she puts under her pillow to get rid of her worries). As for diet, dd1's is very poor (unlike her sister who will eat anything in sight), we gave up a long time ago and she now eats what she likes (its a battle i can't win so not worth the stress), she survives on pizza and cheese sandwiches, we top her up with vitimans (multi vits).

School have been great with dd1 and try to push her at things she's good at (maths and english) and they remind her what she's good at when she gets upset about things she's not good at (mainly sport, playground games). She has improved and does not get as upset when she cant complete tasks or win games (it does get easier the more they expereance not winning but it just takes a lot longer than it would with a child not on the spectrum). Dd1 now keeps a diary which seems to be helping as she can write her worries down, i am allowed to read it which also helps me know when she has any problems.

We seem to have good days and bad days with the anxiety (but at the moment its more good than bad), most bad days are caused by something happening at school (someone not letting her play a game or getting told off for talking in class).

HarrietJones Thu 30-Jun-11 08:49:06

Thanks everyone. Marne you've said what I didn't want to hear wink
will look into the diary idea.

Marne Thu 30-Jun-11 21:36:13

Sorry grin

Focus on her good points, she sounds very bright, the anxiety can be worked on (just takes time). Dd1 is doing well at school (top of class) and i believe she will do well in life (go to uni and get a good job), she's very capable, she just needs people to be a little bit understandable (which they are as more people are aware of AS/ASD), girls tend to hide/control their traits as they get older to fit in and be sociable so they tend to do well.

I would say my dd1 has mild Aspergers (she copes well, none of her friends really notice that she has Aspergers altough she does come across as being slightly different), she has friends (mainly boys) and can just about cope with social situations.

HarrietJones Thu 30-Jun-11 21:46:49

Talked to dh this am & he didn't fob me off like usual. Lots of the things we talked about applied for me too. My concern is witha diagnosis she would lose the opportunity for lots of careers. I certainly wouldn't have my job if I had a diagnosis of AS.

Marne Thu 30-Jun-11 22:07:00

Its hard, dd1 was diagnosed at the age of 4, at the time we felt she needed a dx to help her and so we knew why she was like she was, at the time her problems were more severe. Sinse getting a diagnosis school have been more understandable but other than that we have had no extra support. Dd1 knows she has AS which i think helps her understand why she feels different than other children. Dd2 is a lot more severe (severe language delay but accademicly fine) so theres no way she could not have a diagnosis as she needs a TA at school (full time 1:1). It depends what you are expecting to gain by getting a dx, you can also get a dx removed as she gets older (if she no longer fits the dx).

There are a lot of employers that would happily employ a person on the spectrum as they tend to be on time, very bright and are honest (most cant lie). Alot of children with AS become engineers or end up in jobs in IT.

purplepidjin Fri 01-Jul-11 07:10:00

A diagnosis of ASD is the same as any medical diagnosis - confidential, and you only have to tell people you want to know. So while you'd have to disclose it on a medical form pre-interview, your colleagues wouldn't be told unless it was you doing the telling.

I've not known it hinder any of my ex-students unless they let it...

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