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To diagnose (AS) or not?

57 replies

bizzi · 13/01/2005 15:01

Ds 10 would most probably be given a diagnoses of Aspergers if we asked for a diagnoses. But am unsure what to do. He has asked why he's more sensitve, fussy, bossy etc. He struggles in the school setting, is regularly in trouble and intolerant of others, pupils and teachers. We struggle in other situations too, eg the dentist. We are moving area at Easter, he may well have to attend two new primarys before starting a secondary in Sept 2006. I think having a diagnoses will help me and him at the moment. But what about the future. I've been told he may be resentful, even angry about it.

OP posts:
roisin · 15/01/2005 08:55

Hi Bh. Thanks. I think it's just the idea that with every step you take there is no going back. We didn't think it was a big deal to have an EP report that explicitly mentions AS, but having seen some reactions to it, it clearly is. There is this huge chasm between paranoid parents wittering about mild AS characteristics, and a very experienced professional EP putting it in writing.
I don't know, I'm just feeling really down about it all today
Roisin

Blossomhill · 15/01/2005 09:07

Ah Roisin. I know it's so scary isn't it ! I think the main thing to remember is that whatever label they give (if that's the route you do decide to take) it won't change a thing about your ds.
I have been told by SALT's, ed pyschs, paeds, portage, physchiatrist (sp) that dd is not on the spectrum. However I have always had my doubts and had a chat with the head and she just said something about dd and the spectrum and I was taken a aback to be honest. I didn't say anything, just listened. They introduced a girl of 10 who was similar to dd and it was such a turning point. This girl has done so well and if dd does as well then that's all I can hope for. I went home and cried my eyes out and then thought I know that dd has something and to be honest to see dd on the spectrum somewhere makes a lot of sense to me and explains why she does the things she does. The school also said that dd will never get an asd dx as she doesn't fit the criteria for anything enough. So is a bit of a mixed bag to be honest.
I just really feel for you as I am still scared. Scared of what Bibic will tell me in March but as they said it's nothing I don't know already.
Hugs to you roisin but I really feel that sometimes dx open doors. I am not sure how you feel but I know that I need to know one way or another. Otehrwise I am going to continue analysing dd thinking is she/isn't she? Hopefully Bibic will provide some answers as they are going to do a CARS (autism rating)on her!!!!! Blossomhillxxxxx
So sorry if I have wittled on again

roisin · 15/01/2005 09:17

Yes it is scary. We are not planning to pursue a dx atm, and it may be we never do. But I do know that if he were assessed now, whilst they might not necessarily say "yes he does" they certainly wouldn't say "no he doesn't" either.

I've got to go now - dh has taken the boys to their swimming lessons, and I'm supposed to be cleaning the house So I better at least make a start before they get back!

Blossomhill · 15/01/2005 09:24

Hope you feel better Roisin

Blossomhill · 15/01/2005 09:25

You should see my house. Ds is 7 today and he has got toys everywhere!

roisin · 15/01/2005 10:50

Happy Birthday your ds! What are you doing to celebrate? Do you have parties planned for later?

Blossomhill · 15/01/2005 11:47

Well it seems that all of his friends have birthdays at the same time!
At the moment ds is with dh playing football as he is in a local team.
Later he is going to a friends brithday party. Next week he is having his birthday party at the local leisure centre, a football one.
He is so lovely with dd though and completely understands everything. It was so sweet last night they were both in dd's bed reading. I came up and told ds that he had to get into his bed and he said mum guess what has said. I said go on the..... Apparently she had said I love everything about you. The amount of kisses she gave him on his card as well. I just think they are so lovely together

redsky · 15/01/2005 13:32

Am i a 'paranoid parent wittering on about mild AS characteristics'. SORRY!!

Blossomhill · 15/01/2005 14:00

redsky - why do you think that? From what you have posted you do have genuine concerns! Blossomhill

redsky · 15/01/2005 15:07

Phew! Thanks BH. I was just wondering as dh has always seen me as a fussy overanxious mother - but I don't think I am. I just love my kids and want to do the very best I can for them - but gee its difficult to know what to do sometimes!!! Wish I had had MN 10 years ago!!!!

roisin · 15/01/2005 15:47

Oh crikey redsky - I didn't mean you by that phrase I meant me!!! Please, please don't think I was talking about you. Sorry I hijacked your thread a bit this morning to chat to Blossomhill. I was feeling a bit low, and she happened to be on here. I certainly didn't mean to make you feel bad.

What I meant is that when I have wittered on about ds1 having characteristics of mild AS I get mixed reactions, but when someone reads in an EP report the EP saying that "we may need to consider pursuing a dx in the future", suddenly everyone takes it very seriously!

redsky · 15/01/2005 16:11

Thank you too roisin!. Don't worry you didn't hijack anything - glad you had someone to talk to when you needed it. I wish I could come up with something useful to say to you. You are so right about the attitudes you get from people - a dx would make it all legit and official and everyone would sit up and take notice of it BUT BUT BUT would ds be stuck with a label of AS for ever more, even if it was no longer appropriate. Who knows??? Not me.

roisin · 15/01/2005 17:47

Phew! I'm glad I haven't offended anyone!

onlyjoking9329 · 15/01/2005 20:34

well my three have DX of asd but none of them are aware enough to see that they are any different to the next kid, DD one of twins aged 10 thinks all 10 year olds like tweenies ! as for if to tell your child,i know many kids with autism who say they were relieved to be told as they already knew they were different and once they knew then everything made sense and being able to read books about other kids with autism made them feel much better and they felt a sense of belonging, that said once you give a child the DX you cannot take it back

coppertop · 15/01/2005 21:11

My dh was a bit of a nightmare when it came to chasing a dx for ds1. I was pretty sure that there was something 'different' about ds1 but not exactly sure what. For a while I even thought that he might be deaf, even though he'd passed 2 hearing tests by then. When he didn't talk it just confirmed my suspicions. Dh thought ds1 was fine and that he'd be talking by 18mths...then 2yrs...then 2.5yrs... He wasn't at all keen on ds1 being referred for SALT. The most used phrase in our house back then was "There's nothing wrong with him. He's just like me!" Of course back then we didn't know that dh had AS.

The appointment with the Paed was the turning-point for dh as so many things clicked into place. Dh is now the one who comes home with print-outs about AS/ASD and is keen to talk about ASDs. I'm going through yet another is he/isn't he dilemma with ds2. Since his visit to the Paed a couple of months ago he has turned into quite a sociable little boy and is even starting to show an interest in other children. When I asked dh if he thought that my worries about ds2 were just me being paranoid he was keen to reassure me that he'd noticed the quirks too. I think sometimes fathers can find it more difficult to deal with (though not always) but it doesn't mean that they will always be that way.

binkie · 16/01/2005 10:48

I don't know if I've got anything useful to say, but have been thinking about this thread.

I wonder if part of the issue is the very breadth of the difficulties our children have. I have tried to pursue a diagnosis for my ds, maybe because I've been brought up with too great a regard for medical authority? Or because I'm not the sort to trust my own judgement? I don't know. Anyway, the consistent response I get from those who do seem to have the expertise is, no, we grant you ds is a bit of an odd bird but it's not AS - because x/y/z. So since he doesn't sit in that clinical territory there isn't a description for him - and maybe that means what he "has" isn't yet recognised, or maybe it really does mean I shouldn't be concerned?

And yet at the same time, everywhere we go his differences are noticed. The other day, someone who's known him from birth just about, who has a son of the same age, said to me "he's doing so well, isn't he?" It was well-meant, but it made me a bit cross inside - as in, he isn't just his problems, you know, he's more than that. So Roisin's post struck a chord, as it sounds like that's what the fixated lady was doing - seeing the issues not the child. (And that some people are always going to be like that, whether or not there's a diagnosis.)

Blossomhill · 16/01/2005 10:55

That's the same with my dd Binkie she doesn't fit. Although 100% has a langauge disorder and talking to the therapist at Bibic she said listening to everything that (LD) is possibly throwing out other symptoms such as adhd and asd. There are quite a lot of things that dd does that means she isn't asd but some that she does.
I just feel now that if we do find out she has some kind of asd then that is fine as it's part of her (in a way) and will help us and everyone else understand her more.

binkie · 16/01/2005 10:55

I should have said, to put it in context, that the person who said how well ds was doing is not someone I've ever confided in about my worries - so it meant they'd already independently come to a view about ds having problems. (I wouldn't have been cross if they knew my concerns and were being supportive!)

binkie · 16/01/2005 10:57

Yes - BH, in your place I would do the same, I'm sure. I am following your progress with lots of interest.

Blossomhill · 16/01/2005 11:00

Hi Binkie

Could you update me on your situation please as there are so many names on here!

Had a family gathering last night and I said I wouldn't change dd for anything. I love her the way she is. Her quirky, theatrical ways. She has got such a big personality and is so gentle and loving.
I just want to help make life easier for her

binkie · 16/01/2005 11:10

Gosh, and I always feel I hog these threads!

Ds will be six in April, in Year 1, doing "fine and more than fine" [quote teachers] academically but quite a few behavioural problems - very immature, inattentive, easily led into silliness, not good at understanding social rules like when not to call out in class or assembly - or (!!) that you don't try to hug waiters when they take your plate away . He's also got rather tangled speech with some odd articulations.

But he can understand others' points of view, is imaginative in a very normal "shared play" sort of way, and doesn't have any fixed routine type issues. So against the formal sort of AS criteria he doesn't "score".

Does that identify us?

Blossomhill · 16/01/2005 11:21

Binkie - sounds very like dd to be honest!!!! She was calling out in assembly only last week but to be honest I know she does it and I don't really get stressed about it anymore.

Blossomhill · 16/01/2005 11:22

Oh and dd will be 6 in August!

Blossomhill · 16/01/2005 11:23

But he can understand others' points of view, is imaginative in a very normal "shared play" sort of way, and doesn't have any fixed routine type issues. So against the formal sort of AS criteria he doesn't "score".

Binkie cut and pasted that from your post as that's exactly like dd!

roisin · 16/01/2005 13:26

Tbh atm I am feeling a bit mindboggled by everything. In the past 4 weeks I have read books and research papers on AS, dyspraxia, gifted & talented children, conversational pragmatics, philosophy for children, critical and creative thinking skills, ... It's all fascinating stuff, but I think I've overdone it a bit!

Some days I am utterly convinced ds1 is nt, other days I'm equally sure he is on the spectrum.

I think I need to step back a bit and take some time.