multi dis next tuesay, scared they are going to say no :(

[beverleyjayne]

hi everyone

my dd is 10 and is currently being assessed for aspergers. she hates school and we have tears every morning before i take her, but once there she holds it together. however she does not want to go out to playground etc and will not do pe now. she has already done her ados and i think she failed miserably at that, did not do anything she was asked etc,

however now that everyone has seen her in school, they say she could not mask it that much, it would be impossible! but everything i have read leads you to believe that asperger children can be really different at home and at school, my main worry is that they will say no, she has not aspergers and that will be it iykwim. my thoughts are that at least if there is a dx in place it will help her in school etc.

anyone with any words of advice?

thanks

bev

no one at school would accept (initially) that there was any issue with my dd until I wrote to them (you need to put it in writing) saying precisely how unhappy she was. I included direct quotes from her (the particular one that got them was "what is the point of being alive when you have no friends"). They then did start to listen and when I said that I thought that it was Asp they arranged for the ed psyc to look at her. Once she had seen her it was different as she asked us lots of questions and seemed to understand more that girls in particular can present differently.

You can also go via your GP. The ed psyc (and the school) are only really concerened with educatonal needs (this does cover social and communication needs though) so if she is fine at school (my ds is but frequent meltdowns at home) they are not interested. However your GP is concerned with the whole child so if you go to him (we did have to go to two before we found a sympathetic one) adn say that you are concerened then they should refer you to a peadiatrician/consultant/camhs (the child and adolesent mental health lot) and they can diagnose/at least look at your child based just on what you say is happening. If you can get someone to diagnose her tehn you can go back to the school with an official report. Hope this helps - I do know what it is like

I sat in a lecture last nightwith a ladyworking on the 2011 NICE asd dx guidelines, so someone who knows their stuff you could argue....

two things stuck out with re your post:

1. sheemphasisedthat asd is setting specific- so children can cope at home but not school or vice versa- my son is very like yours thatway (structure is the key)

1. she prefers to assess children in the playground as ther is a marked difference between that and classroom- likewise canteen

hth

thanks for your replies.
i am going to see the ed phy tomorrow at 1pm, she assessed dd last week, i think she did a lot of tests re work with her, but from what i can gather she was pleased with her. DD will not socialise at all now, just sits in her room, throwing a ball against the wall, while on her pc. when she is not doing that she is watching the simpsons- obsesses over them!! all summer she never seen one friend, doesnt want to and says her friends in school are different with her now!! i know they arent its just she cant seem to mix anymore . i think that is a very good point about observing them in the playground and i will bring that up tomorrow, hopefully its not too late.

today i just got the feeling that after the salt watched her in school today, and seen her smile that she has changed her opinion, she said that they couldnt mask it like that!! i did say that anything i had read on aspergers lead me to believe that they did mask it and could act very differently between home and school!!

i think i will have ran away by next week

i would love to have heard that women speak about aspergers, as sometimes i think the professionals dont even know what they are doing!

bev

Of course theyc an mask it! learned coping startegies are to be expcetd in ASD children with higher fundtioning abilities above quite a young age, definitely by ten.

hi peachy, thats my thoughts exactly!!!! however the professionals dont seem to think that . i am meeting the phy ed today at 1pm to hear her thoughts on my dd and my stomach is churning at the thought of it.

anyone with any advice or things i should be asking today?

thanks

bev

Hi Bev, If you suspect Aspergers do not let anyone try and talk you out of it. The thing with this syndrome is that kids learn form a very early age learn not to act up at school, and let rip when they come home.Plus as a casworker told me it is a credit to good parents that they do conform! It's a coping mechanism. They have to be so restrained to keep it up at school to not look different. I have experienced the very same argument by my kids school, so can completely sympathise. One thing to remember you know your kid better than anyone. You are not mad! Have you read Tony Attwood Complete guide to Aspergers Syndrome. The more info you have on this condition the more you understand that there is a reason for the way that these kids are. Of course She is not going to want to go to school it is the fear of the unknown. At play time and P.E she will be experiencing major anxiety, she probably has problems with sensory processing and is being overloaded in environments which can not be controlled. If she does not want to do P.E then she does not have to.
Ask that she have a quiet place in school for times when she is feeling overwhelmed she can take someone or do an activity she enjoys. Make sure she has a "time out card or signal" for lessons so that if she feels the pressure she can take herself out of the situation. Above all you know your child.
Hope that this helps if you need any more info get in touch.
violetfairy..

The prof who told you that is wrong; I say that as both a parent of a ten year old (almost) Aspie, someone with traits themselves, and also as someone studying for an MA in ASD 9although early stages).

If there's any doubt there are a few things worth trying:

1. Ask to sek a second opinion.

1. Some areas have tertiary clinics where the more subtle cases can be assessed, apparently ours does yet we still spent 3 years with now obviously quite severe ASD ds3 being shuttled about! only found out at the lecture last week. Enquire whethert hey ahve one, and if not suggest a referral to one outside the area, I know ours does accept these.

1. Look at the independent route; within that there are two avenues- a full independent assessment that can be expensive, is not always accepted by LEA / NHS but can asnwer your questions. There is also a middle road which is to be seen by a non diagnostic charity such as BIBIC (google it) who see a lot of chidlren with undiagnosed AS etc. Their very detailed assessments helped ds1 get a DX and despite operating utside the 'system' they emply a lot of regualr NHS staff and wellt rained professionals, and charge a very small amount (sometimes nothing) compared to independent diagnosis.

Ed Psych's and the like should be good, and some are excellent- the lsy I had the lecture from was an expert Ed PSych and one of the most relaistic, supportive speakers on ASD I have ever encountered. However, have also encountered some (usually employed by the LEA with a contract I guess contains targets....) that exist in another dimension; like the one who encountered DS1 and said 'he talks so can't have AS (a criteria fro AS is of course no alnguage delay- ds1 was 5!), the colleague opf that person who claimed ds3 performed all sorts of complex tasks he couldnt even do now 3 years on, or their colleague who (prior to being shifted elsewhere) suggested the way to deal wioth ds1's meltdowns was to lock him in a room and remove all the things he obsesses over, niiiice.

It migt be worth getting a copy of the TRIAD of imapirments from the nAS website and making notes yourself rpior to speaking to the assessors, or even getting hold surreptitiously of a screening test such as CHAT to try and work out for yurselfwhat is going on.

It is the case though that some peolpe do get a DX they should at first assessment, esp.once they have learned to cope- but I am not convinced that coping strategies does not lead on tot he negatives of as (depression, etc) through stress later on. the ones who do eventually get the help and dx are the ones whose parents keep knocking on doors, sadly. The others get- ????