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Aspergers smiling through everything!

(18 Posts)
Pootrouble Thu 12-Feb-15 17:24:34

Dd is 5 awaiting assessment for aspergers. The problem we have is she just smiles and gets on with it particularly at school. I've always assumed this was the case and it was highlighted further this week when she went along to a club she has recently started and looked a bit lost during the activity but was still smiling then from a distance I noticed a solitary tear rolling down her face despite her false smile �� it made me so sad. When I called her over she just broke down.

I have tried to explain this to school and they're not getting it at all. I guess my problem lies also with the fact that a camhs 'assistant' (so not even a fully qualified psych) will be doing a school observation as part of the ASD assessment and if she's just smiling along and mingling and getting on with things surely they will just think all is well!!

At home she is a screaming, crying , jabbering nervous wreck who is a prolific school refuser and whose anxiety is through the roof! But as soon as she gets to school it's like she's another child and she puts on a front.

I'm very concerned about how these high levels of anxiety will affect her mental health as she gets older particularly if they keep going unrecognised at school

senvet Thu 12-Feb-15 17:33:22

As lots of people here will tell you, keep a diary and, if you can, video and photo evidence.

The account you give is so moving. If anyone else there saw it, then ask if they would mind confirming what they saw in an email.

Are there other outside-school people eg relatives, carers, tutors, neighbours etc who have seen her grief and home-behaviour that lies behind the performance-smile? See if they can write you a note about what they see.

And with luck, polter and some of the others with good research info will show up and arm you with research about typical ASD behaviour in girls which will help your not-yet-qualified psych start her career in the way that we all want to continue.

You are right to spot the risk, but there are plenty of ways dealing with it.
Hang in there

Ineedmorepatience Thu 12-Feb-15 17:43:01

Feel for you poo sad

My Dd3 is 12 now and was dx'ed at 9. At 8 a SALT recorded that she has a "social smile" when she is nervous or doesnt understand! She still does it now.

It is really tricky and I wont lie, school has been very hard for us. We have tried to get more help for her but its hard when they mask so well at school. She is also unable to attend school due to anxiety sometimes, although it is less often than last yr but its still bubbling away!

Her dad and I have recently decided that if she cant cope some days we are not going to send her. I dont know if this will make the school help but even if it doesnt at least she will have had a break!

If you google Girls with Aspergers there are lots of articles written, all saying pretty much the same thing but very interesting!

I agree with senvet about the diary and video evidence if you can get it!

Keep coming on here for great support and advice, it really is the best place .

Good luck flowers

Pootrouble Thu 12-Feb-15 17:53:06

Thanks guys. I have no doubt that the ados test and the 3di interview should be enough to secure a diagnosis but I think they do the school interview first as a sort of screening which I worry will make them strike her off their books! Camhs here aren't great!
We have kept her off a couple of times due to high anxiety and will continue to do so when we feel we need to. Feel so sorry for her she struggles so much. I really thought she would enjoy this particular activity and although she does like aspects of it she tends to worry herself sick about it beforehand so looks like we may need to stop it

greener2 Thu 12-Feb-15 17:58:45

Message withdrawn at poster's request.

Pootrouble Thu 12-Feb-15 18:08:31

Ok will try and get footage. May try the next time she goes to this activity, it seems so wrong filming her though when she's obviously so upset :-(
I've just been talking to her about friends though as it seems quite a few kids are going to each other's houses for tea. I asked her if we should invite one of her friends back here for tea her reply "no way, they will touch all my stuff and mess up my shelves!"

senvet Thu 12-Feb-15 18:27:45

so maybe go out together for a cake or bowling or something....

See if you can find someone else to video her, then you can be there for dc and you will have a useful witness.

Once you have some of this stuff make sure that it hits the desk of the CAMHS person before the school screening

PolterGoose Thu 12-Feb-15 19:15:18

Message withdrawn at poster's request.

Pootrouble Thu 12-Feb-15 19:53:30

thank you ladies - helpful as always ;-)

ConstantCraving Thu 12-Feb-15 19:59:44

I'm at the same stage as you Poo. DD is also 5 and due her observation and ADOS on the 24th Feb (have waited so long - now dreading it). What you said about DD looking 'lost' sounds so familiar. My DD does the smile and has also learned to say she 'fine' to anyone who asks. I have got school to use 'traffic light' happy , ok and sad faces to identify how she really feels as her understanding / communication is disordered somehow (not sure how - just know it is) so she often says she's ok or she 'doesn't know' but will point to the right face. They have been shocked by how often she has chosen the sad face when they thought she was fine...

I agree with the others about videoing and sending it through - have sent the assessment centre loads of little clips of her jumping and flapping, lining things up etc (none of her melting down as I never seem to think to grab a camera at that point).

senvet Thu 12-Feb-15 20:19:28

contant well done,
video of meltdown? Not sure I would know where to begin
Good Luck

Ineedmorepatience Thu 12-Feb-15 21:12:49

No I never managed to video a meltdown either but its worth a try!

My Dd3 learned how to manipulate the visual system that her original school used to monitor the childrens feelings. She refused to place her photo on the "sad side" because if a photo was on the sad side the teacher would ask the child what was the matter!!

She has gone days without speaking to an adult at school over the yrs and has never been able to access help!

If I were starting again now I would teach her the language she needs for her fears I would "put the words into her mouth" because she hasnt learned to do it by osmosis like NT children do and she is still stuck as non verbal now as she was when she started school at 5!

If you know what your girls are scared of tell them! Teach them how to say it and praise them like mad when they use the words themselves!!

Poo I am in a similar situation to you at the moment, ds has his ADOS this coming Monday and has already had a visit at school from SALT who said he seemed "fine". My ds masks at school (although the mask is slipping a bit recently) and his teacher says that he is perfectly normal. It is incredibly frustrating, but luckily his SENCO, OT and paed seem to understand the concept of him possibly masking.

Because of this I have just sent his paed some videos today, it is really hard to video your dc when they are distraught, and especially hard looking through them afterwards, but our paed said it was a great idea to send them for assessment purposes if your child presents very differently at home. I have surreptitiously taken audio clips too when ds is having a meltdown so I am not winding him up further by pointing my phone at him.

It is heartbreaking seeing them trying to keep it together, I so understand it, but it sounds like you have a great understanding of your daughter and her needs, which is the best foundation for her in the worldthanks

bitbap18 Fri 13-Feb-15 16:03:58

My DD is very nearly 7, and only diagnosed last week. Mainly because at school she appears to be the model pupil - takes instructions literally, follows all the rules, eats all her lunch, tidys away everything etc etc. however beneath the surface, and once the psychologist went in to observe her, and commented to teachers, TAs etc on things, they could finally see what I have said for the last 3 years to them, and for 5+ years to GP/HV/paediatrician!

We've had to battle hard to get her diagnosed, because girls can hide it very well, and especially in high functioning/mild cases, it's not always obvious until 10/11/12 years old.

We were fobbed off by a paed who saw her twice, for 10 minutes at a time. But I knew deep down something wasn't right, and pushed for more checks. Eventually I had to do a complaint, after being told I was just an over anxious mother!

This resulted in us being referred to the best Pyschologist in the county, and she has been amazing. She's been so thorough and after 6 months of meetings, assessments etc, we finally have the diagnosis - Asperger's.

Now we have this, we will be referred to a support team, who will write to school, explain it to them (part of it is they are just not trained to see things in the right way) and give them advice etc for dealing with more challenging years to come.

My advice would def be video as many different aspects as possible, record things, triggers, melt downs etc, but also fight for things. You know her best, so stand your ground and get her the assessment she, and you all, need.

I've now got the added complication of my husband just being diagnosed with Aspergers too! Good luck!

Pootrouble Fri 13-Feb-15 16:31:31

Thanks it's so very hard to try and get any sort of help when your child isn't disruptive too the class

bitbap18 Fri 13-Feb-15 16:37:38

Totally agree, but I guess the help isn't to come from them anyway, it needs to come from the medical side. But even that's a battle! I could write a book on the battles I've had getting my husband and daughter diagnosed over the last 7 years!

senvet Fri 13-Feb-15 17:07:48

odd thing is 'disruptive' is not in the law. Neither is 'copes OK'.

So go for it poot. Honks etc

Carrie5608 Sat 14-Feb-15 20:31:27

My Dd is 13 and at secondary and we haven't had the ADOS or the parent assessment yet but we have had the school observation. Don't forget they won't look only at her facial expression but also at how she interacts with peers and teachers. They might observe some group work etc

I didn't see what they observed but I did see what the teachers wrote ( quite a few comments as she is in secondary) they said things like Carries Dd speaks to no-one in class but the teacher. Carries Dd speaks only when spoken too. Carries Dd uses a book to avoid talking to people.

My Dd had a social smile too (with hindsight) now she has a permanent sad expression.

I think even a CAHMs assistant will know happy children don't just smile they laugh and chatter and wave etc

flowers for you, this is so hard to go through.

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