I think it's AS - how do I perduade DH we need to push for dx (when I am not sure either)?

[mrsbaffled]

Hello, just got back from hols which has been a real eye-opener for me. SIL has told me that she is almost certain DS (8) has AS. She and BIL noticed it years ago (they have been trained to spot things like this in their work) but didn't tell me as I wasn't in the right place to hear it, but now I have been reading up about it and have come to have my own suspicions it was now the right time to broach the subject with me.

(Background: SIL's DD was dx with AS last year. DS has some motor planning problems, but not bad enough for dyspraxia dx, sensory problems, and SpLD in spelling, writing and fine motor control .... so has been through lots of tests already. He also had eye tracking problems, but VT has fixed those and RRT as part of that has really helped with some of his coordination problems).

The thing that shocked me the most was that SIL and BIL considered AS with DN as they could see AS so clearly in my DS, and they know it's partly genetic

So.......help! Now it's been said, it's obvious I am looking at a child with AS. It just fits. DH sees traits too, but he says that he can't see the need to push for a dx. Do we bother? What difference will it make??

Also, having been through the dyspraxia process last year and coming away with not a lot (apart from an IEP that's not being fulfilled at school so I am doing it), and my other DS looks like he may be on course for a dx of Tourettes I am a bit loathed to go to the doctors AGAIN for fear of him labelling me paranoid or seeing things that aren't there. I am serously worried about being seen as that kind of parent (especially as my mother really is that kind of parent and took me to the docs hundreds of time for things I didn't have).

I am considering speaking to the (new) SENCO in Sept about it, but TBH I don't think school would say they have seen anything worrying behaviour. He keeps it all in at school, then lets rip at home. Seriously jekyll and hyde. His old class teacher was the SENCO before, but she never said anything. However she did used to say things like "He's quirky", "I forget he's only 7 as he's so grown up in the way he talks" etc etc.... but never any more than that.

Sorry it's long - feel like a bomb has been dropped on me!

Well, you don't need a dx. You can research it, assume he has it, and do any therapy / diet / parenting style you want to without a dx.

And I'd def recommend you do all that. (And you probably know I'm going to recommend you start with Tinsley House, or his book Is That My Child - which you will really like. :) )

However - school can't do any of that stuff without a dx.

I would view a dx as insurance. Insurance, so that if he does start to get bad at school, especially as he gets older and bigger, you have the dx so that school can understand that he's not naughty, but has SN.

The problem with not getting a dx, as school might start to view him as all sorts of negative things when he's no longer little and cute.

I always find this hard to answer if your DC can 'pass as normal' because my DS2 cannot, so a HF ASD DX for him has been nothing but useful. As Indigo says, it would be a very good insurance to have up your sleeve if you need it. DC with AS seem to stereotypically suffer from anxiety and can really struggle as the gap between them and their peers widens. By secondary age a DX may be essential.

Also children with AS or higher functioning ASD often seem to cope until they meet a challenge such as transfer to secondary when their difficulties come rapidly to the surface. As the diagnostic process can take quite a while, it might be worth starting the investigations now.

I think the point of a diagnosis is to get help (e.g. if you thought your child were short sighted you wouldn't think twice about going to the opticians), and so that others recognise that your child is not just trying to be difficult, but is behaving in a certain way because they have neurological differences.

However if you can't identify areas where your child needs help and they seem to be coping perfectly well, there may be no need for a diagnosis, and I think you would find it difficult to get one. On the other hand, if your son does have difficulties that get in the way of his participation in every day life, even though he may not be able to tick enough boxes in any particular category to get a 'labeled' diagnosis, that does not mean his problems have miraculously disappeared and he shouldn't be entitled to help.

What makes your SIL and BIL think your DS should have a specific AS diagnosis? Difficulty with social skills, for instance, can be a symptom associated with many neurological diagnoses (although most often associated with AS disorders).

Anyway, in summary, if your son is still having difficulties I would carry on trying to get help, because as others have said it can be a long (often too political) process. However, I would do this to ensure he gets the help he needs, not because your BIL and SIL have 'diagnosed' AS.

I don't think a dx of Aspergers does bring any help with it. Certainly hasn't for me.

I think it brings with it understanding.

You've already done so much for your DS (vision therapy etc). Think how much more you'll be able to do for him once you know more about his problems.

I would pursue a diagnosis (not purely however, on the basis of what your BIL and SIL have been saying) and ask your GP to refer you to a developmental paediatrician. This is so you fully know why things are with your son the way they are, no point scrabbling around in the dark wondering and not knowing why.
Also a dx can open doors that would otherwise remain closed. A dx as well will show school exactly why he is as he is. Its not a thing to be feared.

Also secondary school in particular can be bloody tough for children whose additional needs are not being met and he's only 8. From what you write as well his needs in school are clearly not being met now. Bottling up all the frustrations of the school day only to kick off after school is a manifestation of that as it having a school that is not following the IEP. Have you challenged school on this as to why they are so inactive?. Many schools as well do not recognise many children with additional needs simply because they are not trained or skilled enough to do so. In a class of 30 some children often go unnoticed or ignored simply because they are just about getting by in terms of trying to conform and overall behaviour.

I think, sadly, because of limited resources, for many teachers the question they ask is "does this child stop me from delivering the curriculum to the rest of the class", not "are this child's needs being met?".

The NHS specialist asked us and school to fill out this questionnaire when we mentioned asd (ds already had an ADHD diagnosis).

I would 'blame' your ds-i-l and db-i-l for the return trip to the GP, and even bring one of them if need be. Perhaps say you're worried after seeing your DN's issues that you might have been a bit in denial? perhaps relieved to grab the dyspraxia-SpLD-sensory diagnosis and not consider whether or not there was anything underlying it?

[am massively projecting here, I was so pleased when ds's ADHD was confirmed as to me, that meant he didn't have any ASD... live and learn]

I suspected DD had AS when she was ten. I went into school thinking that they knew about this kind of thing. They said that she was well behaved and a high achiever. They had not noticed social problems (because she picked on weaker children and bossed them around all the time. It looked like they were friends). So I thought I must have it all wrong even though it was hell at home. I have since discovered that they have no knowledge or training on AS and have no motivation to do anything if the child is well behaved in the school environment and performs academically. (They especially know nothing about AS in girls. The female presentation involves making yourself disappear into a crowd, deflecting attention away from yourself to avoid social confusion).

My nagging feeling would not however go away, so off we went to CAHMS and yes, after months of interviews/tests were given the dx - Asperger Syndrome.

Was it worth it? Absolutely, utterly and completely. Because her peers outgrew her and she could not cope when she went to secondary. I could not have got any help for her at secondary school without the diagnosis.

I think you will know when you need to do something. In the meantime keep a diary of anything that strikes you as different, quirky, excessive or particular to him. When I started to note down everyday difficulties, no matter how small, a picture started to emerge. And please remember no two people with AS are the same. They are all different. There is no definitive checklist (eg my DD often does eye contact, doesn't mind loud noises but has many other issues). This is a syndrome with many possible behaviours/symptoms that need to be viewed as part of a bigger picture by professionals.

Good luck.

Thank you all so much for replies. I am taking it all on slowly and am sound-boarding off my close friends at the moment x