Newbie, possible ASD son

[Tiggles]

Hi
As a brief introduction I am a mum to 3 boys aged 8, 3 and 1. When the eldest started at school I became convinced that he had Aspergers. After lots of assessments by the community paediatrician she decided that he didn't and he had 'school related anxiety leading to Asperger type symptoms'. He had OT to help him with confidence relating to PE and general motor skills like eating with a knife and fork. As the paed had given him a diagnosis he was removed from CAMHS (who had just decided to send him for further assessment).
We then moved areas and DS after a period of HE started at a new school. I had been told that if he still had anxiety after 6months of living here to contact CAMHS again.

So after him suffering for anxiety living here he has finally been reseen by the local CAMHS team. They were great, and gave him a thorough review and decided that it is unlikely that he just has anxiety but is much more likely to have Aspergers. So he is now on another waiting list to have a full autism review which I guess will be in October time. It turns out that the paed decided he didn't have ASD by drawing a happy and sad smiley and asking if he knew what they were .

So I am now having to re-get used to the fact that he may have Aspergers, having spent ages convincing myself he didn't.

However, I do have a couple of questions, the first is that DH says he thinks it can't be Aspergers as DS does not always follow rules. However it appears to me that is usually as DS has already made up his own rule he is following eg we have asked him to eat quickly at the table he says he can't as he was told at his last school to eat slowly else you may choke. Also, he knows we have brought in a "You mustn't talk at the table until you have finished eating" rule which he often keeps, but if he does start to say something he HAS to finish what he is saying however mad that makes DH in the meantime.

Do either of those things sound Aspergery?

Sorry, just realised how long that is. Many thanks

what a rollercoaster ride, and glad your getting it sorted now. As for the 2 things you mentioned, its quite possible he could still be aspie even with those things as it is a broad spectrum. DD1 will always follow what ever rule she heard first. So if she was told to walk slowly in school but then someone told her to run, she would always walk, thats the first rule she heard. And as for needing to finish talking, DD1 does this alot, drives me mad, but she has to say what she needs to say as she knows she will forget it f she doesnt. HTH

Yes the having to finish what he was saying sounds very asd to me! Ds ( who has asd) does this too - he forgets our rules too but follows his chosen routines. Ds is kind of controlled by his need to control! Ds suffers anxiety which causes meltdowns which the paed says is due to his asd. It is most obvious at school because it is a difficult enviroment ( noise, business, people, unpredictable things happening) and cannot be avoided like other difficult enviroments (crowds, shops).
Ds was Dxed late ( after being told he could not have asd) and I frankly struggled - kept looking at the things that did not match the dx. Take your time and be kind top yourself.I espect your dh is struggling too. Dh took a lot longer to accept the dx.

I feel really bad now!

Why did I never realise that was why DD1 HAD to finish what she was saying no matter what. I've come down on her so many times about it without connecting it with her AS. Why didn't that occur to me?

Having to follow the first rule you heard is very familiar. We are constantly expected to follow school rules at home. I was even told the other day we should put our hands up if we want to speak

I would worry about a paed who seriously thought you could rule out AS because a child can recognise a sad/happy smiley. Some re-education called for there I think. Probably the kind of re-education which encourages them to refer when they don't know about a subject.

Have you read any of Tony Attwood's books? It may be worth looking in the library, especially for your DH to read. If not there are links to radio interviews and other info on his website which might help you.

yes to having to finish saying what they start saying.. ( makes me smile because this is a huge thing with ds2... Also if it's in his head.. It has to come out!)

rules.. Ds is a funny one on this.. Rules aren't alwaysas set by us or school... More what his perspective is regarding the rule... If you break it.. Boy do you know!

Deffinatley recommend tony attwoods complete guide to aspergers... Lots of different issues and stratagies and explinations as to why.
( I actually highlighted the relavent parts for us and flip though now and then to see howweare doing).

Drawing smiley faces??? Omg!

Ds2 is good at the big emotions.. Pants at the little ones.. The warning emotions are changing ones... So if your happy to start with.. Then you get a bit irritated.. Then you get angry.. And he doesn't see the warning bit.. As far as he is concerned .. He was doing something and you were happy.. Then boom! Your angry! What was that about?
We now over exagerate our facial cues and tell him what we are feeling!

He sounds just like my dd1 (6), her main problems are with anxiety. She also makes up her own rules and then expects people to stick to them. Dd1 often brings school rules home (the putting up your hand if you want to speak etc..).

Thanks so much
Making other people stick to rules - hadn't really thought about that. But all the time if say I tell DS2 to do something and DS1 is present then DS1 continually shouts out the 'rule' at DS2. It drives me potty!

When they are his own rules it gets him quite anxious/stressed if other people don't follow them. eg he mustn't touch the blackberry thorn bushes, if DS2 goes near them he starts anxiously screaming at DS2 to get away in case he gets hurt. The fact that he just knocked DS2 over and hurt him and he just walked off would be completely irrelevant.

Off to 'amazon' tony attwood

Will also be amazoning Tony Attwood.

similar situation here with ds1 also 8- sorry if sound a bit odd but we are wondering what is the point of getting a label (almost cert ASD here)- we just want someone to help us with how to help him and not just tell us it's alright to be like this. Because he still has to manage in life.

Am I off piste here? Loads of grown ups I know have all the symptoms but I don't think things got diagnosed in my day or at least where I came from - you were either clever or not. Clever being a high acheiver.

yep last comments sound spot on aspie.

My dad is asperger and forever making up rules that we had to adhere to whether we knew them or not. DS1 (4) asperger and is forever enforcing rules and makes his own up, esp on DS2. The talking, have to finish saying once started, often with a desperate urgency.

'It turns out that the paed decided he didn't have ASD by drawing a happy and sad smiley and asking if he knew what they were.' WWF, my ds1 knows this (learnt), but the details as to happy, sad, not so sure.

Tony attwood, v. good. if only i was brave enough to show dad, so many pages describe him perfectly.

Hi Eskimorose
When I first went back to CAMHS I was looking for info on how to help DS. However if they can given him a useful label I think it will help him mainly in a school situation. At the moment his teacher is very good with him, she coaxes him out from under tables when he is hiding from new situations, she will explain to him exactly what is going to happen if the routine is changing because she knows that otherwise he won't be able to participate - at his old school they were meant to go on a road safety skills course DS spent the entire time hidden under a table.

He really struggles working in group situations - if they don't go by his rules then tough.

I can only see these issues becoming more of a problem as he gets older. If he is labelled hopefully the school (Especially secondary school) will be more forgiving and more likely to help him. He is already worrying about going to secondary school - what uniform will he wear etc.
I don't want a label to say "ah well its his aspergers, can't do anything about it", I used to look after a child who as he put it "I am allowed to be naughty as I have ADHD". Err, no, you have to try harder to be good because you have ADHD .

sorry stupid me what is CAMHS?

I have 3 sons as well (8, 6 and baby of 5 months)!

My DS1 doesn't hide under tables - his issues are rather masked - his teacher this year has been great but is leaving - last year he was just thought of as lazy and naughty.

sorry but feeling very down and alone on this and thinking of how I haven't been as nice to him as I could have been

Eski.. CAMHS = child adolesant mental Heath service.. It's part of the nhs

As far as labels.. Well IMO it should help access to help and support for your dc and you as a family.
It might help with schools
but most importantly the reports will help determine where your dc struggles and where they do well.. And if you know this you can help them... Basically because you know what the issue is.

You know your dc's well and you will know or already do know when they are being plain pain in the bum.

Most of all you are not alone!

I suppose a label is just the beginning of a 'understanding how to understand and best support' passport. Life for us has changed mostly for the better since ds got the asd Dx. I and the teachers are better able to work out why behaviours are occuring, so we can help things along - and ds is able to enjoy life and acheive more.

Eskimo a label helps because a DX means the school can get extra funding for things like 1:1 support from a specialist TA, specialists like OTs and SALTS coming to the school and helping the child, funding for extra training ans courses for teachers and support staff to help.

Without a dx and a label this help will not be available.