I finally got someone to listen to me about Ds1 and possible AS

[SparklyGothKat]

Ds1 has many traits of AS, and I have asked many times about it, last time was told that even if he has AS, that it wasn't worth dxd him as he has a dx of Cerebral palsy and we get all the help we are entitled to. Anyway went to see his consultant today with a huge list of traits. She listened to my concerns and is going to write to the school and then arrange a meeting with me and DH to discuss it without Ds1 being there. We finally might be getting somewhere...

[Niecie]

Well done for persisting and finally getting somewhere.

I am no expert on CP but I would have thoughts the traits of that are completely different to AS and therefore they need to be handled differently so saying you are getting all the help you can already is not very helpful.

I hope you get some help soon.

[SparklyGothKat]

he is nearly 11. Ds1 knows exactly what AS means, I asked him and he said 'high IQ but has social skill issues'
CP is a physical disability so completely difference and yes we do get all the help (DLA, CA etc) but we need to know why he is the way he is. He handflaps, bites himself, removes himself in social situtions through choice, hates people being in his space, very bright, is obsesses with computers to the point that he knows more than most adults about them, and its all he talks about. Has low self esteem, talks about us being better off without him etcetc...

[Niecie]

He sounds a lot like my DS who has AS.

He is quite mild and the only help he gets is OT and SALT. Nothing for the AS as such.

It is sad though as the low self esteem is very common amongst AS children yet there doesn't seem to be a lot of help for the psychological effects, just the physical which, as you say, you are already getting due to the CP.

One of the reasons I wanted a dx, even though I wasn't happy about DS being labelled is so that we know what we are dealing with and can help with the low self esteem and social aspects.

[SparklyGothKat]

DS1 spent about 1 hour being angry with me yesterday, because I spoke to the doctor about him, he hates me talking about his 'issues' but me and DH managed to calm him down, and exlained that we are only doing this for him.

[Niecie]

Oh yes, DS1 hates people talking about him! Sticks his fingers in his ears and begs us not to say anything.

No good us pretending everything is alright though, is there? Has to be done.

Would he be happier if he was there too?

[SparklyGothKat]

omg he covers his ears too and also begs us to to say anything!!!

Went to the school and warned them that a letter from the consultant would be coming soon and the teacher looked at me like when I explained why.. apparently he is really popular..

[anonandlikeit]

Hi Sparkly my ds2 is 5 & has mild CP & ASD.

Even though he has always had OT, Physio etc for his CP getting the ASD dx has helped in terms of accessing Psych etc.
DS2 also does not like any attention focused on him, he doesn't have the verbal skills to tell me but will collapse on the floor crying the minute he hears his name mentioned in an examination room.
The OT has worked hard with him to help him accept social situations.
He also takes part in a social group at school each week.

Very different to your ds i know, but def worth pushing for assessment.

[Niecie]

That was a nice thing to hear.

I don't think a lot of teachers understand AS. It is perfectly possible for a child with AS to be popular and have friends, I think. The AS children just don't understand the workings of the social world in the same way as the rest of us but they still have a personality and a sense of humour and they can be kind, just like any other child, particularly if they are at the mild end of the spectrum.

I was trying to think if we had a long wait for the paed after referral by our HV (DS was 4ish). I think it took about 4 mths although the whole process from referral to final dx was 18 months

I hope it is quicker for your DS - it should be as he is that bit older and therefore there isn't the same concern that he might be just a bit immature for his age rather than having a disorder. Fingers crossed.

[SparklyGothKat]

he isn't immature, he had the reading age of a 12 year old at 7 (that was the highest the school could assess to, it was actually higher) he is very trustworthly and is very mature for his age. He had a speech delay when he was younger, and had to go to a SN nursery with a SALT unit attached.

I hope that we will get somewhere now anyway