Behaviour - Your opinions please?

[shaz298]

Hi All,

Am after some advice about my little man ( again ).

For a long time - years actually, I've thought that he perhaps has Aspergers but he doesn't quite fit but has lots of traits. Fits ok with ADHD too. I'll list them below:

?Is very busy, morning til night, like someone has wound him up and let him go
?Uses a wobble cushion in school to help with fidgiting
?Is never still, unless he's asleep. Even if he appears to be still, his fingers or toes will be furiously wiggling
?When he comes out of school, he HAS to run right up to the top of the playground. This is the same if he's been anywhere where he is contained, i.e. cinema. As soon as he gets out he just needs to run
?He can be very impulsive, running out on road etc, if he wants something he wants it NOW!
?he can concentrate on things he's interested in but struggles if he isn't really interested
?Needs lots of support to stay on task if doing homework etc, but is happy to do it iykwim
?Can't predict what is likely to come next in a story
?Seeks out adult company
?Has huge control issues
?Has transient tics ( teeth grinding is the latest)
?Gives a running commentary on what he's doing - constantly. Even continues when he goes to the loo and we're in the living room! Talks most of the time
?Doesn't like waiting and is impaitient and struggles if he has to wait his turn for anything or to have his say
?Gets stuck on things ( i.e doesn't want to go in the shower and keeps repeating over and over, crying 'I don't want to go in the shower,' he continues this as he strips and when he's in the shower. often after he's out, dried and has his PJs on he is still saying 'I don't want to go in the shower'. Doesn't change the tense to 'I didn't'
?If he get's stuck on something - like above, there is no getting through to him. He seems completely unable to hear what others are saying to him
?Has extensive vocabulary but often gets it quite muddled - i.e 'that's what I was meaning about' rather that 'that's what I was talking about' or 'that's what I meant'
?He has big sensory issues, both aversive and seeking
?Lots of big hand/arm flapping if excited
?High pitched voice, even more so when excited
?Doesn't like new situations ( i.e. for him to get anything out of a trip to a theme park we need to go twice. Went to thomasland and day 1 he just looked and wouldn't do anything, day 2 he did the rides..........
?Doesn't do goodbye. When someone arrives he asks continually when they are going. Whne asked he says he doesn't want them to go, but as soon as they say they are going, he completely ignores them!
?Isn't good with endings in general. Using a 5 minute alarm helps a lot.
?Is a stickler for the rules ( goes down very well with teachers), but can't help himself from correcting others who are breaking the rules.....
?No sense of embarrassment
?Has recently been having lots of anxieties ( am thinking hormonal but not sure ...)
?Is very literal in his translation of what people say ( Teacher recentyl said that when doing mental maths she tell the children to hold a particular number in their head. She says looks at her as if she is mad and just doesn't get it, but if she says think of the particular number he's fine.
?Very ridgid in his thinking.
?He is very good with the computer
?Is obsessed with Thomas and friends( knows each train by the sound of it's whistle even!)
?Has an amazing ( almost photographic) memory except for names which he is terrible with- which doesn't help with the medical stuff!
?He does not need an exact routine to function, but if he is told the plan for the day he gets really upset if it has to change (use picture timetable each day in class)
?Does lots of repetitive play, round in circles, walking with his fingers.......
?Fantastic imagination if playing alone with his trains, will make up a story and be each character and play out the story. But ask him to make up a sentence and he struggles
?He plays well with other children, IF they stick to the rules!
?Manages much better ( as do most children) with clear boundaries and routines
?If he does something one day, he thinks it will happen every day
?Is very conscious and needs reassuring about what day it is and is it the weekend..
?Can be very sociable but at other times can't cope with social situations at all.
?He has really secure attachments with us and wider family, and can be very affectionate
?Does make eye contact but doesn't really seem that comfortable with it, p\articularly if you ask him to look at you.
I'm sure there's more.... The thing is that it's all quite manageable just now and I think that is in part down to how we parent ( use lots of strategies automatically due to previous work/training), a very understanding and caring teacher and he isn't looked after by anyone other than me or Dad.

A bit worried that things which are ok now will become more of a problem as he gets older ( hand flapping etc) and maybe doesn't have such an understanding teacher.

My question is this ( sorry for taking so long to get to it and thank you for getting this far!) Should I be asking for some kind of assessment for him now, to ensure that if problems do occur that they can be put in place quickly? Or should I wait until things become difficult. Or maybe there is nothing and it's all down to all the medical stiuff he has endured?

I don't want him to have an unnecessary label, but I do want to make sure he has the best chance in life.............

Your thoughts would be very much appreciated. Feeling a bit out of my depth with this one and really not sure what to do.

Thought I might type up the list ( and ask teacher if she's anything else to add) and give it to Ed Psych at nexty meeting and ask what she thinks? Or should it be community paed??

Will stop now and await your word os wisdom.

Thanks all and apologie to anyone who has read this on another forum :)

i had my dd tested at 2 then again at 5 and yet again at 7 and 11 but they told me she didn't have asd. we moved county when she was 15 and within a year got a dx of asp,asd. camhs organised this test as we had been lied to by other doctors. one had diagnosed asd but as the dx had to be agreed by 2 doctors and only one had said yes and the other wasn't sure, my dd had no help as she didn't have a dx. we just kept getting told dd was just an awkward dc. go to gp and insist on referal to pd

Shaz,

I would be asking for an assessment; what you write re your DS certainly warrants further investigation. Also your instincts are screaming that something is amiss here, you have had concerns for a long time so address them now. Do you in your heart of hearts think that your DS could be somewhere on the autistic spectrum?. Have you read the National Autistic Society's website?. Certainly don't wait until things get difficult!. Act sooner than that!!.

"I don't want him to have an unnecessary label, but I do want to make sure he has the best chance in life............."

He won't get an unnecessary label, they don't give out such things easily or quickly. Assessments all take time, months usually.

Labels should only be seen as a signpost to getting your DS more help.
You as well are his best - and only - advocate here in order to get him the help he needs. If your bury your head in the sand then that won't help either you or your son in the short term let alone the long term.

"Thought I might type up the list ( and ask teacher if she's anything else to add) and give it to Ed Psych at nexty meeting and ask what she thinks? Or should it be community paed??"

You need to give the list to a developmental paed; community paed may or may not be of much use here so should also pass you onto another paediatrician. Your GP should refer you to a developmental paed. EP and teachers CANNOT make any official medical type diagnosis. EP can only advise on DS's educational needs and teachers are just not trained enough to recognise many types of special needs.

I would also be now looking at applying for a Statement from your LEA to help him more at school. This will be particularly valuable in the long term as well.

If i were you shaz, i would ask for an assessment for him now. Your his mum and know when somethings not right. I'd definetly use list same as you have here as this will give them something to go on. I know what you mean about unnecessaary label, however as you already know it will get him the proper help that he'll need for his future. My ds diagnosis came from community paed, so thats where i'd try for assessment. However saying that, if you can speak to ed psych first then that would be an option too for another opinion. Have you asked his teacher what she thinks? Good luck :)

Thanks All,

Don't need to do the statement thing - thankfully as we're in scotland. Her already has full time 1-1 due to medical/feeding needs ( completely tube fed) . She is very good , as is his teacher, but I do think they make lots of allowances for him because of the other medical stuff so not necessarily pickingup on everything, which is why I wanted to show them the list.

I forgot to say - he's 6yrs old.

I have thought there's beens something amiss for a long time and like I say so far we're managing fairly well. He isn't showing any signs of aggression at all, the opposite in fact. His meltdowns are more crying episodes and getting 'stuck' like mentioned above.

I don't mind the labels tbh, in fact if we could get a label for the physical stuff then that would be fab, but that's not going to happen any time soon. He's had every genetic test going and they still can't find anything.

Cognitively he is very, very bright which is fantastic since we were told when he was a baby that his brain would be 'mush' !

The reason I haven't pushed it before is that we were so busy trying to keep him well, surgeries, loads of emergency hospital admissions that I really didn't have the space.

I just didn't want the docs thinking ....here she comes again with something else!! Luuk is physically/anatomicaly unique so I'm always asking them to look at this/that.

Am feeling more confident that it's not just me looking for things but that there is actually something going on - so thank you all :) xx

Just had a thought. Through lots of hospital admissions we know the ADHD/Autism nurse and she's lovely. Think I'll pop in and ask her who is the best person to talk to re DS's behaviours, and a potential assesment.

xx

Shaz, you know we can't DX here, and your DS has other medical issues which may complicate matters, but your list of concerns/behaviours sound very familiar. My DS2 has an ASD DX and we have friends with DSs with AS or ASD DX and every thing in your list describes something at least one of them does!

I'd get him assessed ASAP. It's a long old process but a DX will get the school understanding his needs better, not just his medical needs. It's great that he's bright, any deficits he has in natural social skills etc hopefully he will be able to learn.

I'd go down the medical route as well as the educational one as both can take ages, but concerns recognised by either will support you getting the other to take things seriously.

Your DS has a lot of the same behaviours as my DS2, who is being assessed with a tentative dx of ASD, ADHD, speech and language delay, plus a few more specifics. I definitely agree that an assessment is probably a good idea. It can only give you more information and open up more support avenues to you and your son. I think the paediatrician route is probably the simplest, as far as getting things rolling. But I would still continue through the school as well.

Best of luck.

Thanks everyone. Am sure now that he should be assessed and it's not 'just me'.