ASD - Help feeling very confused

[claw3]

Ds definately has sensory issues. He has been seeing OT weekly since October 2008 and she suspects he has Sensory Modulation Disorder and that ds is gifted (apparently gifted kids are often over responsive).

We have also been seeing comm Paed for the last 2 years (4 visits) but we have never seen the same PAED twice. He was tested for autism about a year ago and ruled out.

We went to visit senior Paed last week (1st time we have seen her) and she is disagreeing with OT's DX. She suspects he has autism and referred for him to be tested again.

My ds's behaviour in general is that he is compliant, kind, helpful, very polite, he has an extremely high attention span. What are the behavioural signs of ASD?

I dont really care whether ds is gifted, as im sure this will become more apparent as he gets older, but i dont want him to be misdisagnosed because of it.

What do you think?

Claw3 - I really feel for you. This is a nightmare when you just want to know what it is that upsets your child.

Please keep me posted on what happens with your ds.

Mumslife - The very mild autism is what got me questioning in the first place. His sensory issues, especially the eating are quite severe.

Perhaps im just trying to be too logical about the whole thing. Ive been thinking if he leaves so many boxes unticked, could it be that he just doesnt have it or could it be something else if you know what i mean?

I can see where you are coming from completely. When you start searching around, some of what you read on this topic is a glaringly obvious match for your own child. I think that once they get to a certain age, the sensory issues in particular seem really out of synch with the rest of the child you know.

Yet, when you look at the other factors which seem key to a diagnosis, they just don't seem to match your child so you wonder what on earth it could be....

Also to be wrongly dx's with autism, if he is gifted and vice versa could be damaging.

For example in a gifted child they are encouraged to use their strong imagination and be creativity, whereas with autism they are to be encouraged to stop etc.

It's very difficult all this. I've read this thread with interest, I sometimes wonder whether ds1 is mildly aspergic. He certainly has some 'odd' characteristics but they are not overwhelming or especially inhibiting. He sensory seeks - he sniffs things, he used to hand wave but doesn't do this anymore, he's 11 btw, used to tic by doing this eye rolling, face pulling thing, he used to lick things too but that seems to have pretty much stopped. He'll always sit on the floor not on a chair when watching telly etc, fidgets.

I haven't done anything about a dx. I'm not sure what to do, or why I would. He's imaginative, highly verbal, occassionaly literal but not always - ie. I asked him yesterday to check if there was any ice cream in the freezer and he did. He checked. He didn't then tell me if there was any ice cream! But he's also learnt what is a figure of speech, he tells jokes, understands word play and punning.

He does things to death, in quite a fixed way but is also funny, has variable eye contact, isn't great socially at school- struggles with the give and take, can talk too much etc, doesn't always get the nuances or else actually doesn't care that much about others? I've been told he is 'gifted' by a teacher, but I don't know if he is - less so now he's older, I think, was startling when younger- and certainly he's better at languages than maths. I often feel that he doesn't see the 'whole' picture.

He doesn't melt down if routines aren't fixed to, he isn't obsessive or fussy about shoes and clothes or buttons etc or food.

So I wonder sometimes whether a dx is needed, or even actually if he would qualify. If it's there, it really is mild.

Some traits of your ds do sound like those of a child of high intelligence to me - and maybe those traits do cross over with mild aspergers? They might be lightly shaded on a venn diagram - but aren't that strongly shaded? HTH

Of course, Claw3, I completely understand what you say. I find it really worrying to think I might be promoting a label being attached when I have no control over what it might be.

But, if you are not sure about the conclusions drawn, you can always ask for a second opinion within the NHS. You could try and locate the names of experts in the field locally; the relevant professional body would be able to help you with that.

I got an out of area referral this way after DS was born. He had IUGR (mild) and was induced a little early. My local PCT agreed to fund it as it was causing alot of anxiety.

Don't know if that helps?

Hi ahundreadtimes - I was starting to wonder whether a dx was needed to be honest, especailly after we have been there, done that and got the t-shirt and still appear to be no closer!

His eating is started to affect his health and his 'odd' behaviour stemming from his sensory issues do cause him a few problems in school. Take lunchtime for example could become a nightmare for him, as he doesnt eat, now if i didnt have the backing of the OT, the school would think he was just uncooperative and 'make' him eat it etc, etc.

Many of the autism like characteristics are also gifted characteristics. OT thinks gifted, Paed thinks autism.

Debs - Thanks Deb, i will certainly try for a second opinion. I was thinking i might have a word with the OT and see what she suggests, she doesnt know that Paed hasnt agreed with her DX yet.

I just didnt want it to look like i was in denial and only wanted my ds to be 'gifted' and wouldnt accept anything else if you know what i mean.

Yes it's hard. And the sensory things make life difficult too. DS2 was diagnosed with dyspraxia, and he had more of those sorts of sensory issues. Couldn't wouldn't chew and anyway struggled with a knife and fork, rarely wore clothes when younger, hated messy play! He's 9 now, and tbh they seem to have cleared up in a way I'd never have thought possible - he wears itchy school trousers and has a shirt collar he has to wear done up. [faints]

I am in NO WAY saying don't get a dx. I did for DS2 - and actually his ed psych gave me information on aspergers and giftedness for him too. [yawn] It's hard sometimes I think I'm making all of it up tbh but I also don't want to overlook anything and fail them if that makes sense.

I think what I'm trying to say, is yes, I know how you feel, and also this is what I did ie. nothing! I think I'm being clear-sighted about him, I hope I am. I'm definitely NOT saying the sensory issues will clear up, it's just that with both mine they did, to some extent. I think it's just that I am in the 'mild place'. A friend of mine has a child who is HFA and another who is ASD - and I can see the difference. Does this make sense?

ahundread - I understand what your saying, i suppose im worried about the 'mild' place, turning into 'severe' place in years to come, its good to hear that is not always the case.

Well claw, remember this is a self-diagnosed mild place!

Keep going in the system I think. My post is really responding to your confusion - because I share it - not trying to make any prognosis.

My ds also loves to play tricks on me, just the the other day he said...

ds - I love you mum

me- I love you too

ds - I did'nt like you very much last night though.

me - why?

ds - I'm just joking

However he does not understand sarcasm, I suppose because he is very literal, a lot of the time I dont realise what I say can be misunderstood, a few weeks ago he had a friend stay over, the friend was staying in ds room, and ds wanted to sleep in my bed, so when putting him to bed I said, now dont touch anything of mine ok? Two minutes later I heard thumping on the floor, I went back up to find him stood in the middle of the room and sobbing, when I asked what was wrong, he said, you told me I cant touch anything, so I cant even touch the bed[sob]

claw
I can remember questioning the very same things about my boy in relation to a diagnosis. He also doesn't take things literally...he understands sarcasm..in fact he always seemed quite mature in that way (had an understanding of these things beyond his years).
When he was assessed i brought up these things with the cahms team. They felt that because he was 'very clever' he had worked these things out...and it was noted that he ofton made a joke out of literal things...like he had worked them out and turned them on their head iykwim.
He is also very accommodating...kind,helpful,good attention, very polite...but as he has got older..rather withdrawn at times (too busy thinking)
tbh with my boy...it wasn't untill he was past 7 ish that the subtle differences between him and his peers and the way they interacted became more apparent.
He is 11 now...and is very different from his peers...stands out a mile.

Can I ask in what ways troutpout?

I was told by ds paediatrician that aspergers starts to show itself much more from the age 7 - 9.

Hundred..

The expressions on his face...he's very unguarded. He has a very open face. He looks vulnerable ...it worries the hell out of me.At the same time.. sometimes he is rather 'mask like'...closed off..aloof and almost 'cool' looking

His movements...he moves without knowledge of how he looks when he's moving.

His pitch of voice and accent...he talks like someone who doesn't know/care how others would percieve him. He doesn't use slang.He is very formal.

The things he talks of.. and he has no desire to impress with the things he talks about...he talks for himself or to impart his knowledge to someone who may have asked a question which touches one of his specialisms . He likes being helpful too...so will always try to help with his knowledge.

His doesn't care if he is 'one of the group' (he doesn't give a toss) ...completely comfortable being by himself doing his own thing.Likes his small group of friends but equally does not respond to peer pressure..does not court admiration...doesn't give a toss if you like him or not...he only cares that he does the right thing and that he is 'morally' good. (He does not consciously choose to be like this..he just isn't capable of anything else)

he doesn't make judgements about you when he meets you...your appearance, dress,...he treats everyone the same. He is completely honest and very very loyal.

I think these are all quite apparent when you meet him or talk to him for a little bit. There are obviously loads more things but you have to know him a bit to see these things.

He's blardy lovely

ahundred - Thanks, im just feeling a bit deflated, took 3 and half years to get this far, only to have Paed not agree with dx and send us back to square one. Feels like a everlasting game of snakes and ladders

Trout - Your description above was very good, a real insight, that was exactly what i was looking for.

My ds doesnt seem to fit into the general autism characteristics, but when explained in detail, i can a little of him in there, if that makes senses.

mumslife - Thats interesting about none of his friends having aspergers etc. Do you ever feel the need to explain his behaviour to others ie parents?

hi claw and all
the following article is very interesting and I think it might apply to your boys - they seem lovely by the way!

news.bbc.co.uk/1/hi/health/7841808.stm

Cantputfingeron - Thank you, very appropriate name by the way!

Interesting that it does seem to be a boy 'thing'.

Can i ask whether anyone elses son is left handed?

yes ds is left-handed

mumslife - Ive had Dr's tell me, its bad parenting and even my GP. Kinda he would eat if you made him eat, its because you let him get away with it type of thing!

Must admit at times ds doesnt make it easy for me. Just the other day we were sat in the hospital waiting area and a baby starting crying, ds hands over ears, eyes shut and at the top of his voice 'mum tell that baby to shut up, i cant take it anymore'! mum giving me dirty looks