Am I being ridiculous to think DS1 might have Aspergers?

[chocolatespread]

DS2 (5) has just got his 30 hour statement and is rated as having profound and multiple additional needs.

It has only very recently occurred to me the DS1 (7) might have Asperger's, though. DS2's behaviour is challenging, but in it's own way DS1's is similarly challenging. Here's why I'm thinking Asperger's (but I'm anxious I'm just being a hypochondriac by proxy):

*When he was born he actually averted his gaze away from us, to the extent that I went to the doctor about it. It righted at about 3 months so I thought nothing more of it.

*His language development was very, very forward, he taught himself to read when he was four, yet his attainment at school does not reflect some of his heightened abilities (although he is g&t).

*He really, really doesn't grasp certain social norms - not looking in other people's things, boundaries, etc. Every time we tell him, he genuinely looks non=plussed.

*He has overwhelming amounts of energy. He can't be just still - something is always twitching!

*He lays awake staring into the darkness for ages.

*He soils, though never at school.

*He has an intense interest in Doctor Who, and rattles off such trivia as how the 1st doctor's TARDIS differs from the 7th doctor's.

*He has very determined agendas which he has to complete no matter how inconvenient it is to those around him - the same can be said for random trivia which he just has to tell you whatever situation you may be in. He can get very distressed if he can't follow his thoughts through.

Sorry this is so long! He is very high functioning, so maybe I'm just being silly or excusing my inability to cope with him satisfactorily (he is, in his own way, exhausting to look after). Are my experiences with DS2 making me just look out for things with DS1?

Oh, and there was very lttle imaginative play as a toddler - my DD is two and her play highlights the difference. He does play Doctor Who at school, though.

I always say, go with your gut, its normally right :)
If it were me I would start a diary about everyday things for a few months, then you can gather how much this stuff is getting in the way of his everyday life.
I would also speak to school about their experience of him.
Have you looked at the Baron cohen test for him?

Doesn't sound ridiculous to me, though it's always hard to know where to divide traits from actual asd. I guess the answer is when it interferes a lot with life. Of course, if he does gave AS, he also has the huge advantage of parents who know what they're doing. It doesn't sound to me like you're making excuses for failing to cope... it sounds like you're doing a good job with a complex little boy.

A very wise mum told me she wasn't currently chasing a diagnosis for her ds2. Because she and the school had adapted so well, he didn't need one. It's balancing the benefits of diagnosis with the upset of going through all the 'is he isn't he' diagnostic kerfuffle and dealing with the emotional fallout if he's found to have it. We're trying for diagnosis.. and now have to wait weeks for the results.

ds1 is practically identical, except he soils at school as well.

he's 9 next month.

i don't think he has aspergers though. i think any specific dx really fits tbh. he's just a bit different. that said, we're doing the paed round-up again next week - so far asd, aspergers, adhd and odd have been mentioned by different people. none are really right, and i'm not actually bothered by anything apart from the wetting and soiling. that's why we're back at the paed's door.

our last gp just said 'he makes the hairs on the back of my neck stand up', so that's as close as we've got to a formal dx lol.

Thanks, both. lisad - I've submitted my thoughts to the SENCO but haven't caught up with her aout it yet. A diary is a good idea. His class teacher struggles to keep him on track. maria - I kind of feel that way: that I've raised it with the SENCO so they can be more aware of his needs, but I don't think he necessarily needs an official DX. Although, secondary school may be a different matter. DX might be useful then.

maria - I've just read your post again. Thanks for your kind words (the "complex little boy" bit).

madwoman - when did you start wondering?

mm, difficult to say really - he's always been very busy, he can't actually sit at the dinner table, he's always rocking the chair or kneeling on it with one leg, whilst the other one leaps around... i don't think i've ever seen him sit facing the table to eat properly, and he's always had some very odd sensory issues with food - used to touch it on his cheeks/ rub it around his lips. we have a bit of a battle with cutlery - he would rather eat with his hands. nursery picked up he was very bright when he was 3 - they tried to get the lea to assess him, but they refused, so they did their own thing with him and he sort of followed the yr r curriculum (it was a foundation stage unit) - which in hindsight was a bit weird - they didn't actually teach him with the yr rs, it just sort of happened that he was doing the same stuff... he could add and subtract, and play shops to work out change - work out how many ways you get 20p with a handful of change - that sort of thing.

anyway, every teacher he's ever had says 'goodness, isn't he bright' swiftly followed by 'goodness, isn't it difficult to get him to do anything?'

early years the teachers found him a bit of an amusing novelty - they loved that he has a really adult sense of humour, and said they could talk to him and it would go over the heads of the other children in the class - and would challenge him for his (and their) amusement. in yr 1 his spellings included stuff like 'fluorescent' one week lol, just because he was interested...

he's quite variable - one minute he is 100% engaged and has brilliant eye contact, very together, and the next he can be sitting rocking and won't make eye contact at all - will even turn his whole body around to face the other way and fold his arms. if life doesn't go his way he finds it really difficult to cope. recently he's cut some foods out completely, and is re-reading and re-reading the same books - finding it really hard to accept anything new. and he has a real sugar addiction - will steal sweets if they hidden anywhere in the house.

but it's the wetting and soiling that i find the most difficult. i do wonder how much of it is interlinked.

Think he'd get on well with DS1, mad! every teacher he's ever had says 'goodness, isn't he bright' swiftly followed by 'goodness, isn't it difficult to get him to do anything?' Did I write this, or did you? Could easily have been me. Sitting at dinner time, just the same. When he was six, he started rattling off -2 + -2 = -4, -50 + 50 =0, -2 + 3 = 1, etc, etc. I asked, "have you been doing this at school?", and he said, "No, I've just been thinking about it."

But, not understanding social norms and soiling is a real pain. And it's really hard to get him to do anything that doesn't fit in his scheme of things. Also, injustice, of even minor things, brings him to tears. If someone hits him he'll cry, not in pain (he actually manages pain really well), but because he's totally perplexed that anyone would be that mean.

I talked to the SENCO this morning and she said that, actually there had been some things she'd noticed, so we're going to have a meeting with his class teacher in early January.

I have one of these too. Maybe they're the Next Big Thing? After all, Asperger's has become a bit last-century by now.

We need a new syndrome name.

I don't think you're being ridiculous. Just depends on whether a label will be helpful or not. We finally decided that with ds1 a label of aspergers would be helpful (given that it was waved at us when we weren't sure we wanted to accept...), even though I think he's going to learn enough coping mechanisms in the next 20 years to be able to take advantage of his strengths and become a very useful member of society, rather than just flounder around in his weaknesses. The label will help speed up the process of accessing his strengths and making use of them to cover up his oddities!!!!! And if he's still perceived as a bit odd as a grown up, at least he's got a satisfactory explanation!

i'm still not sure whether a dx would be helpful - i'm still not convinced he does 'fit' anywhere... (we also have another nchild with sn, choc, dd2 has cp, and i've been around the system a fair bit, and headed up local pan-disability stuff, so know lots of children with all sorts of dx...)

that said - i posted on here when the new gp last year agreed with me and said there's definitely something going on, ASD or ADHD-wise, let's refer. i was definitely relieved that someone else had noticed. in fact i could have kissed him, because he said 'i bet he's harder work than dd2, eh? despite her disability?' it wouldn't have been the first time i'd burst in tears at any random doctor lol... so, i don't know. jury is still out here - but as i said, we have another paed appt on monday. it's primarily to do with the soiling etc, but who knows where we'll end up.

lancelottie - what shall we call it?

discordant syndrome?! (as in not being in harmony with the rest of the world, rather than disagreeing with it!).

ps I think they use PDD-NOS (pervasive developmental disorder not otherwise specified) in some countries for developmental profiles that are atypical but don't quite fit the criteria for a specific named condition. If only such a "label" could actually attract appropriate help for the identified problems!

Thanks, all, for your words of wisdom. I can really relate to a lot of what you've said. Rabbit - I like 'discordant syndrome'. Genius.

Good luck at the GP. If you're as clear to them as you are when posting here, they can just write it out verbatim & their colleagues will be congratulating them on their great referral letter .

Thanks, maria, needed that!