Newly diagnosed and a few questions (longish)

[Lizziesfolks]

we have recently received a diagnosis of Aspergers Syndrome for our DD

 

I have a few questions if you don't mind?

So now we have a diagnosis the question is what should we expect to happen now, with regards School and will this help us in our Annual Statement review as this is our Transition review to Secondary school

 

What is the right time to tell her she has Aspergers?What has been the response from the child when they have been told?

 

As for us and the news our daughter has Aspergers - well we are relived we have a diagnosis but will it really help us/her from an educational point of view.

As for me on a personal level, i would have to say that i have mixed emotions to say the least in some ways i/we new she was different but i have to say i personally am quite upset, like i am sure most if not all parents are when the find out that there is something wrong with there child.

 

Sorry to have a moan about this but one last thing how was everyone parents about being told there Grand Daughter/Son has Aspergers, i have to say mine were none to "understanding" when i told them,and as for my sister well i am still waiting for anything like a call/text back to discuss it or ask us what that means for DD

 

If you are still with me Thanks for your time

 

Chris

Edited June 7, 2008 by Lizziesfolks

[NobbyNobbs]

i wasn't diagnosed as a child, but for the following reason i'd say tell her. for as long as i can remember i knew i was different from other kids. i grew up thinking that i was going to be a serial killer or something because there was something wrong with me and i didn't know what it was, but i could feel it.

 

as for grandparents, my mom has had great fun telling everyone she knows, and the majority of them have been interested and said it explained a lot. my mothers side of the family now want a sit-down with me to discuss how they can help! (my idea of a nightmare so i'm putting that one off) do your family fully understand what AS is and how much it affects people with it? it does have a stigma of being an 'excuse' for naughty kids so perhaps giving them some info on it might help.

[Shnoing]

...

As for us and the news our daughter has Aspergers - well we are relived we have a diagnosis but will it really help us/her from an educational point of view. ...

 

You know your daughter already. She's the same person that she was before. The diagnosis is just helpful for someone from outside your family (teachers, etc.) who might misinterpret her behaviour. It takes some time to make the connection between what the child does in day-to-day life and the diagnosis so in due course it may help you not to get frustrated, e.g. when the child has difficulties to learn to ride a bike.

<'>

[Lizziesfolks]

Nobby Nobbs

 

Thanks for that,to answer the question about parents about 3 weeks ago when it was discussed before the final diagnosis i told them where to look on the web for more info and we have discussed it ourselves before that a great length as we thought she has an ASD and was awaiting and assessment

 

Chris

[Lizziesfolks]

Shnoing

 

Thanks for that - yes we do know our daughter as you say and it certainly explains a lot to us, like you say having trouble riding a bike

 

Chris

[pearl]

Hi Lizzie

I wont say anything about transition as my info probs isnt up to date as it happened to JP quite a while ago - I'm sure others will know.

 

I told JP when he was about your daughters age - but by then we had known about 5 years & had plenty of time to absorb it all. I'd wait till you feel confident you can talk to her without getting upset, then go for it (but dont leave it too long). JP took it v well, & many more on here will say it came as a relief to their child to know there was a reason why they felt different.

 

A diagnosis certainly made a difference to JP's education as it gave us access to specialist support from peeps who either knew about autism or were willing to be trained. Culminating in 6th form where they had a specialist Asperger team I am sure he would not have done as well as he did without a diagnosis.

 

As for how you are feeling, its normal to feel mixed emotions - you have an answer to what has been puzzling you for so long but you are now beginning to realise the magnitude of it all. Its very early days. Many of us parents on here have been through it & remember how it felt. And further down the line, when you have come to terms with the diagnosis, you probably won't see it as something "wrong" with your lass - but part of what makes her unique, different & fab. And she is still the same person she was before her diagnosis.

 

Grandparents In laws said it was our fault for babying him - knee jerk reaction to the shock, these days its very different. Grandad died a few years back but both he & Grandma had by then become very proud of JP. Grandma never fails to tell me how well he is doing whenever she sees me.

 

My parents took it much better. My Dad never got to hear of JP's diagnosis as he died just a few months before, but he knew there was something, & told me to fight for him. I am my fathers daughter, so I did.

 

Hope this answers a few of your questions. Lots of support on here, make use of it <'>

[Kathryn]

Lizziesfolks,

 

Diagnosis is a time of mixed emotions. For me it came quite late, (my DD was 15) so it was a relief, mostly to find there was an explanation for everything that had puzzled us for 15 years.

 

Whether it will help your daughter from an educational point of view - I hope so, but it depends on the school and the LA. Your daughter should be able to have access to ASD specific support services available to schools, but you may still have to push to get the extra support. Having a supportive medical professional on your side may help.

 

Grandparents - when my daughter was diagnosed at 15 my mother in law took it badly - was crying down the phone to us "I don't know how you cope!" and went into total denial at a time when we needed her most: but that was 4 years ago - now she is an ardent campaigner for services in her corner of the world. My father still hasn't really taken in any of it and probably never will.

 

K x

[Lizziesfolks]

Pearl

 

Thanks for reply, as for name thing not a problem i didn't even notice it until i read the note on meet and greet!! proves how awake i am

 

Chris

[Lizziesfolks]

Kathryn

 

Yet again, thanks for the really useful comments, all ammunition for our meeting in a couple of weeks with LEA

 

Chris

[bikemad]

Id say tell her-my lad used to feel(well still does)that he is a freak and oddball n weird n didn't know why-he still feels this but does say at least he kinda understands why things are how they are. As for parents I told mine n I just as well not have bothered cos they were just yeah whatever but my sisters have been fab n offer to help n have him over etc. School I couldn't comment on as my lad is only 8 so don't know bout the transition to Comp.

[julie1]

hi we were relived to get a diagnosis for our son as it ment we were not mad or bad parents that were getting it so wrong. How ever when we told our son he was around 10 years old, he new he was different at a much younger age or rather he would say whats wrong with other people why dont they understand what im saying. He sees it as the world is crazy and he is fine. Our son saw the diagnosis as an excuse for very bad behaviour because we were given a book that talks about autism and our son thought that he had to do every thing in that book because that is what he has autism. We then had to look very hard for a book that would help our son to understand more about himself. We also joined a local support group with other children with asd, that helped to show our son how all children regardless of diagnosis are different, and they do not all have to do exactly what a book says. He is quite proud of who he is now and nos that it is ok to be different. He does say sometimes that he wished he was not autistic but that is usually after a bad day at school. And no matter how hard we try i belive school will never change for our son as he does not fit in with other children. We do belive that things will get better when he no longer has to be in school.

[Lizziesfolks]

Bikemad & Julie1

 

Thanks for the info - different people perceptions of things and experience's really help

 

Chris