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Puzzled about what paed said about asd kids...

(25 Posts)
mysonben Wed 12-Aug-09 14:22:45

This morning we've had the second paed app. for ds (3.9), he is now being refered to camhs.

Although paed still maintain some of ds' behaviours at nursery , and at home, plus other issues with speech, sensory problems,... are strong indicators of (mild) asd, she cannot say for definate whether he has asd or not, and whether the issues could simply be linked to his speech delay/disorder (sli).

But she said he showed a good level of interaction with her, and that none of the autistic kids (under 5 y) she has seen in her clinic showed good interaction like ds did. hmm

I have to agree ds was been very good with her this morning, ...but i pointed out that he usually is better at interacting with a single adult than with a busy group of his peers (although he copes quite well in a small group of 3 or 4 kids.)

I really hope CAMHS will eventually provide us with a definate answer, because we're back on the rollercoaster of "is ? isn't he?"

Marne Wed 12-Aug-09 14:31:51

Your DS sounds similar to my Dd1 (AS) she found it easy to interact with adults and with 1 or 2 children, i was worried that they would not give dd1 a dx but we got a clear dx of AS. I hope you get some answers from CAMHS.

debs40 Wed 12-Aug-09 14:33:44

It is frustrating isn't it? I'm coming to the conclusion that unless dealing with 'classic' cases, the criteria are so wide and the definitions, and their applications, are so vague that these labels are nebulous and frankly meaniningless to a large extent.

As a PhD student, I have access to all academic journal databases and there are loads of articles disputing the finer points of dx. It's a minefield

You mentioned that you are hoping to get ds into a nursery which will help him without such a dx and I think the only thing you can do is concentrating on getting practical help

mysonben Wed 12-Aug-09 14:35:50

I meant "is he ? isn't he?"

DH and i got the impression she was saying " all kids with asd cannot interact to the same level as ds did this morning".

He was pretty good but still had to pulled from the chair he'd hidden under when she first called ds and asked him to come and play with her. wink

bubblagirl Wed 12-Aug-09 14:37:51

it is hard but my ds has always had great interaction on 1-1 or small group his just 4

i hope you get more answers really you cant take in what everyone says too seriously as we know all children on or off spectrum act in different ways and not all peads will have seen a child that reacts the same as another

just keep your thoughts on the possibility that he is and then if all ok then fantastic but if it comes back that he is you would already have accepted the possibility your ds sounds so much like mine its hard to say if he is or isn't but they are so alike alot of his ASD traits lessoned as his speech came along but his speech really took off at 3.6 and he fits in now in small groups without really standing out yet we know he is ASD from his actions so we know there is no misdiagnosis

just keep your chin up and wait for this horrible waiting time to be over the yr to dx was hardest time for me to and froed so many times to he is he isn't but stuck to he is in the end so i could look into extra things i could do to help him no help is too much help sn or nt and when we were told he was then it didnt hurt so bad as id got used to the idea

lets hope next time you get more answers to where you really are

mysonben Wed 12-Aug-09 14:44:24

Yes , getting the help that is needed at the right time, is our main priority indeed.

But still it is so frustrating at times, we (especially me) would like to know , be sure once and for all, as this state of "not sure" is really stressing.
We feel like yoyos , up one minute , down the next when it comes to ds these days. sad

bubblagirl Wed 12-Aug-09 14:46:29

i know the feeling well mysonben i was ill from it lost my hair in patches thats why i cant stress enough as hard as it is try not to keep questioning yourselves all the time the answers get no clearer until your where you need to be with the right people you will just make yourself ill as i did

good luck lets hope this time round you will get the answers you need

mysonben Wed 12-Aug-09 14:54:47

Thanks ladies for your wise and kind advice.
You are right.
Even the paed did see that ds and i were on edge, and said to us "enjoy your ds and let the professionals do the woorying!" wink
She was nice really and not at all stuck up and stuffy iykwim? grin

mysonben Wed 12-Aug-09 14:55:50

oops! "dh and i were on edge"...not ds.

cyberseraphim Wed 12-Aug-09 15:03:33

DS1 has good interaction - however would say that is good in a basic way and that he does not really do the 'subtle cue processing' that NT children do. Stress is natural but there is no blood test for ASD so will always be a judgement made at a certain point in time. Autism is just a word, DS1 would have been described differently 100 years ago when the word did not exist - It's really the underlying issues and problems that you need to identify and how to solve them.

bubblagirl Wed 12-Aug-09 15:35:16

hijack sorry but cyber i have received clippers thank you so much xx

Phoenix4725 Wed 12-Aug-09 15:41:10

see now ds interatcs with adults ok but kids forget it he will watch but no co play and very little eye contact with kids yet they said hes defintley not on the ASD yet if you look at the chat test he meets almost everyone

mysonben Wed 12-Aug-09 16:31:56

Phoenix4725, do you think or feel your ds might have been misdiagnosed ?
Have you ever questioned his dx (gdd is it?)?
Did they give you an answer as to why they found him not asd even though he ticks almost all the boxes?
Sorry that 's a lot of questions here for you smile i hope you don't mind.

Phoenix4725 Wed 12-Aug-09 16:39:49

honestly yes I do and yes several times think lot more going on than just a delay he does have one without a doubt .. he has several othe issues ongoing which guess muddy thewater but we been discharged by devlopment paed as he is goingto school so were going from useless dr to even more useless dr

but does not explain why he never pointed till he was gone 3 or waved bye bye till 3.6.Has problems with eye contact and does not play with other children

He also carrys asocial and communication dx they reckon lot of his problem are down to being non verbal and delayed recptive,.We have never had a recognised sd test guess problem is hes non verbal

Phoenix4725 Wed 12-Aug-09 16:42:09

oh ds j does not do groups prefers being on his own in fact if kids approach hewill walk/stumble away from a toy .This does not include his siblings though thm he adores

mysonben Wed 12-Aug-09 16:49:51

Cyber, yes i know what you mean about subtle communication cues, i see that daily with ds, who just doesn't "get it" by our tone of voice and fed up looks that he is getting on our nerves at times, and close to a slap on his bum until we actually start shouting and verbally tell him! Not that we slap his bum very often anyway grin
And other times we approach him a bit quick in a funny fake angry manner for playing and he totally freaks out and screams and cry with fear! shock at one point i told DH to stop trying to play like this with ds as he always ended up in tears.

mysonben Wed 12-Aug-09 16:55:46

Phoenix, thanks for replying. I can only imagine what a let down it all must feel for you.
ALthough i want to trust the professionals involved in all this , i still feel a good , proper dx does depend a lot on the competence of the paed / or team.

asdx2 Wed 12-Aug-09 17:17:26

Before five and even after Jack and Lucy didn't really interact with anybody tbh but if they had a toy that took their fancy they'd appear interested just long enough to swipe the toy from them and then either scoot off or turn their backs.
I remember at the intensive interaction course none of the six children actually acknowledged each other in fact when Lucy was grabbed by a little boy who had a thing for long hair she just stood stock still and the little boy wasn't interested in Lucy just her hair.
Jack on the other hand only went near anybody to get the toy he wanted which if not handed over immediately resulted in a meltdown after he had smacked, scratched and pinched first.

smallwhitecat Wed 12-Aug-09 17:46:27

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lingle Wed 12-Aug-09 18:12:05

debs40. Yes I agree. Really they should abandon the whole thing and start again.

StarlightMcKenzie Wed 12-Aug-09 19:51:52

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Phoenix4725 Wed 12-Aug-09 20:10:36

unfortunley her eits all in the dx a social and communication disorder doe snot allow me or ds to access any help at all not even ith GDD and physicla problems apparently hes not disabled

StarlightMcKenzie Wed 12-Aug-09 20:22:13

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asdx2 Wed 12-Aug-09 20:35:22

It's the same in Derbyshire without an actual autism diagnosis you can't access any of the autism specialist resources and even though LEA deny it support is weighted in favour of those with an autism diagnosis.
For this reason alone when Lucy at two underwent her MDA I made it plain to the paed that I wanted an autism diagnosis rather than social communication disorder, GDD and speech and Lannguage disorder which paed had mooted because of her age.
Paed did say that it shouldn't make a difference but acknowledged that in our LEA it did and so gave autism diagnosis rather than have me demand a referral to specialist diagnostic centre.
Phoenix Have you asked for a referral to a specialist diagnostic centre? May be a way forward

debs40 Wed 12-Aug-09 20:46:01

It's appalling if people are being denied help in this way. The services offered to assist with ASD problem areas e.g. OT, SALT etc should be accessible to those who need them because they also encounter these problems irrespective of diagnosis.

Legally, I cannot see a plausible explanation for denying a child with say SCD access to support e.g. SALT which would assist them if they would get it if categorised/labelled, with an alternative label. If it is acknowledged that a child has a problem which could be assisted, then the label is neither here nor there.

The provision of, and access to, services is legally challengable and LA's and Health Authority's must use their powers in accordance with the law, e.g. they are under a duty to act reasonably and exercise their discretion on a case by case basis (and not have blanket bans etc).

If you are encountering problems like that, I really would contact your local MP and ask them to investigate the lawfulness of such a stance. You could contact the NAS too.

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