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WWYD re DX when 2nd DC might have AS but might not

7 replies

Mumfun · 18/02/2011 17:00

DS Dxed with AS.

Never thought DD did have it. Seemed very social , happy and NT when in nursery.

Has struggled a bit in Reception. Does have friends and is much more socially successful than DS. In open and honest discussion with teacher who I know, we agree she has some AS traits - but they could be from her only sibling being AS and learning from him.

She is now 5. If going for DX I would really want to start now as in our borough it would probably take 9 months to get to CAMHS with probably another long wait for support - and a long difficult road to any statement. Our LA is very difficult.

I still think deep down she probably isnt - but am no expert. And dont want her to miss out on the support she would need if she is AS. (Influenced by fact that DS really needs support now but doesnt get it as whole process in this borough has been so slow)

WWYD?

OP posts:
ouryve · 18/02/2011 17:03

I'd get the ball rolling, now.

Al1son · 18/02/2011 17:09

I was in just this position at this time last year when DD1 was diagnosed with AS and I realised how much I could see in DD2.

I had an informal chat with the ed psych who told me not to do anything and it was all behaviour that was either normal or copied. I decided to go ahead and ask for a CAMHS referral anyway.

Lo and behold a year later she's being assessed for ASD/OCD/SPD and possibly even PDA. She's stopped making academic progress in school and is one very anxious little girl.

I am soooo glad I didn't wait and see.

EllenJane1 · 18/02/2011 17:30

It's so common to have more than one DC with ASD or AS. Remember that the triad can be masked in girls who are naturally more social, empathic and communicative. The important thing is to get her help if she needs it. A dx isn't always nec but can open a lot of doors to support.

IndigoBell · 19/02/2011 11:47

I was in your position exactly. Very worried about DS2 who I could see had heaps of signs.

He is 6 and in Year 2. I finally got the guts up to ask his teacher what she thought. And she said definately not. She thought all of his behaviour was learnt from DS1 and the way the house revloves around him.

I was not very impressed with that answer, but thought there is no point going for a dx yet if that's what school think.

Then almost straight after that talk - he changed! He's now fine and showing hardly any disturbing behaviour.....

So, I totally sympathise with you. And think maybe just watch and wait a bit longer before starting everything rolling. After all even if she does get a dx doesn't necessarily mean she'll need a statement.....

Marne · 19/02/2011 14:27

What traits does she have? are they effecting her? will she need support at school in the future?

Its a tough one,dd1 was diagnosed with AS at the age of 4, she has no extra support at school and seems to get on well, she has her ups and downs but only slightly more than most children, having a dx hasn't really helped much other than the school admiting that she has AS.

Dd2 was diagnosed with ASD at the age of 3 and needs a lot of support which she was already getting before a dx, a dx has helped and made it easier to access therapy and information.

If she's coping well i would be tempet to wait and see how she is in a years time.

moosemama · 19/02/2011 16:20

I go through cycles of thinking ds2 has traits that need investigating, then all seems ok, then back to worrying again. Ds1 is 8 and has recently been dx with AS, ds2 is 6 and in year 2.

Generally over the years I've been fairly sure that any of ds2's apparent traits or behaviours have come through having an elder brother with AS.

I know ds2 is sociable and more flexible than ds1 and generally an easier going child, but he does go through phases of being pretty rigid in his thinking and I'm pretty sure that of the three boys he plays with at school, two of them are most likely on the spectrum themselves. Its harder to tell with him, because he internalises a lot, whereas ds1 is very vocal and obvious if he's anxious or unhappy in any way.

I had taken the line, that as long as he's doing well academically, has lots of friends, is generally liked by the other children and has never been bullied, that even if he does have AS, he doesn't actually need any additional support, so I would watch and wait. I'm aware that not all children with AS need extra support, especially if they're very HF, it really depends how it affects them. As Marne said, in her dd1's case she hasn't really needed a lot of extra support as she copes well.

However, recently (since about December) he has seemed increasingly weak, debilitated, exhausted, oversensitive and tearful and is starting to struggle academically with things he previously found easy. All the outward signs (pale/greenish with dark circles under the eyes etc) are that he's physically unwell and that's the line the GP has taken in the first instance.

I can't help wondering though, whether this is all anxiety related, from him trying hard to cope and fit in and if I've been doing him an injustice in not getting it looked into sooner. He is just about at the age when ds1 started to struggle and things really went belly up when he moved into Juniors in year 3.

His teacher, who incidentally was ds1's teacher in year 2 as well, says she has no concerns about him having any AS traits - but then she failed to pick up on ds1's problems despite him being a lot worse.

I'm not much help really, as I'm in pretty much the same position as you in not knowing what to do for best.

As it stands, we saw the GP yesterday and they've asked us to see how he is after resting over the holidays, then bring him back and if he's not better, they will refer him to a paed for further medical investigations. At the first appoinment, they did mention the possibility of referring him to CAMHS for anxiety if the bloods came back normal (which they did, other than slightly low haemaglobin), but seem to have changed their minds about this now. Confused In his case CAMHS wouldn't be much help anyway, as they don't do the ASD dx in our PCT, we have a specialist multi-disciplinary team who do that.

I was thinking about asking ds1's Ed Psych to do an observation of ds2 and see what she thinks, as she's someone whose judgement I really trust.

Is there anyone you would trust to do an informal observation to either set your mind at rest or help you decide to have her assessed? What's the SENCO like, would they be any use in the first instance perhaps?

Tiggles · 19/02/2011 18:20

When DS1 got his AS dx, I asked about DS2, he had all the signs as a toddler - no speech, no pointing, not recognising name etc. Then he started 'playing' with toys in a way that DS1 never did - he actually pushes his trains around train track, so I thought it must all be in my mind. Having had DS3 I can now see that DS2 has rigid non imaginative play, it is just different to DS1.
Anyhow, the autism team said that they would happily assess DS2 for me (now 4) to put my mind at rest. I am just waiting to hear back whether the school age team will do it (although technically he isn't at school yet) as they know DS1, or if they will refer to pre-school age assessment team but they have a lot longer waiting lists.

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