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i can;t think of a title because i want to talk about lots of things!

10 replies

thisisyesterday · 27/04/2010 20:37

we've had some concerns about ds1, who is 5. I've posted on MN about him before, and had some good advice.

basically since he was quite small we've always described him as having "autistic-y traits". He seems, to us, like he is just a bit further up the spectrum than your average child.

he struggled settling in at school, and we've had to go in a few times to talk to the teacher about his behaviour, but now he seems to be coping better

I have spoken to a friend of mine who works with autistic children, and another who is a specialist CAHMS nurse. Both said that, on paper at least, he presents as a clear case of aspergers. I also did a diagnostic test online, that said nurse friend then scored for me- he said it indicated potential aspergers.

I guess what I want to know is where to go from here?
Do I push for an assessment? what does that involve?
Do I just leave him be and see how he gets on?

what are the pros and cons of having a diagnosis? I fear that he would be labelled as "autistic" and that could potentially affect his education and well, his whole life! But equally I don't want him to struggle because he is "normal" if he isn't.

I kind of swing from thinking yes, I need to get him assessed and know one way or another, to thinking well all I need are some tips on coping with his behaviours and making life easier for him. do you know what I mean?

right now he copes ok at school, but it has taken since september for him to settle down nicely. He moves up into year one this september, and he doesn't really do well with change, so i fear that we'll end up with the same problems and it taking a long time for him to settle only for it to happen again the next september.

sorry, this is so long. It's as much to help me think through it all clearly as it is a call for help!
i don't know what to do for the best for my little boy

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TotalChaos · 27/04/2010 22:08

assessment - often multi-disciplinary - most common combination would involve paed and ed psych and speech therapist. but diagnostic process varies from area to area. Sometimes it's done in one visit, sometimes in several.

In terms of pushing for an assessment - well I suppose it depends on whether he can get any support he needs from school system (and if necessary, NHS) without a diagnosis. It's hard without a crystal ball - you just have to make the decision on the information you have available now. problem with waiting and seeing is that it can take several months to get to the top of a waiting list once a child gets referred, so you don't want to wait until you are very worried iyswim.

You are quite right that a lot is down to us parents in terms of coping with behaviour etc, but without the DX, not all schools will take that extra trouble with him.

amberlight · 28/04/2010 08:36

Think of it this way...if you had a child who was blind, would it worry you to have people know that they couldn't see and give them the right help, assistance, understanding and resources to help them cope at home and at school and in wider life?

Same with autism. Yes, there's still some prejudice in society here and there, and there's not enough help, but knowing what it is really does help a lot of children. Otherwise people think we're just badly behaved/stupid/rude/attention-seeking and don't realise they're looking at the disability, not the person.

For me, diagnosis was a blessing. But each person will have their own views on that.

Autism isn't all problems - many of us do have gifts and abilities (not superhuman ones - just things we can bring to society because of the way our brains are wired differently: we tend to have three times better eyesight and hearing, for example - if we can learn to tune into it and use it!). Whilst any diagnosis is like being hit with a poleaxe to start with, and no autistic child is easy (!) , the future is getting brighter for many of us.

I'd maybe see if the school want to take it further, or ask your GP for a referral to an assessment centre. At least you'd know for sure one way or the other...?

lingle · 28/04/2010 16:55

"I kind of swing from thinking yes, I need to get him assessed and know one way or another, to thinking well all I need are some tips on coping with his behaviours and making life easier for him. do you know what I mean?"

yes I do. Getting and implementing the tips on coping is absolutely essential, both for you and teachers and also for him. If that requires dx, get one - keep it private from the other parents perhaps if you want. If it doesn't, fine.

"Knowing one way or the other" doesn't necessarily happen - you still have doubts - even if you become sure he has Aspergers, you have doubts about how serious it is, uncertainty about the future is the one guarantee in this game. So I wouldn't focus so much on that.

thisisyesterday · 28/04/2010 20:25

thank you for the replies, they're all really, really helpful

i just feel confused at the moment! :-S

I think what's holding me back atm is that right now he really is coping ok. we have situations he finds hard and we avoid those, he has got used to being at school and gets on well with his TA, and if even if he does have aspergers it isn't severe

i;m just not sure whether right now the pros of a diagnosis would outweigh the cons iyswim?
I'm not sure it'll give us anything extra... if he was struggling then i would have no hesitation at all.
but then i think, just because he isn't struggling now doesn't mean he won't in the future and then maybe i should be in the system now- as totalchaos points out

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flyingmum · 28/04/2010 20:27

The diagnosis will open far more understanding doors for him at school and will help professionals deal with his needs. You don't have to tell the world about his diagnosis - not because there is anything wrong with having that label as Amber has said and proved countless times (hiya Amber) but because of some people's preconceptions. However, given the amount of coverage that has been going on reacently - I am finding as a mum of an aspie and a sEN teacher that ASC is now the 'new dyslexia' ie, in a way that it was slightly trendy to explain any slight imperfection in learning as 'dyslexic' by the chattering classes, now any slight weakness in social skills is now 'Aspergic tendencies'. I'ts a yuck time getting diagnosed but do it earlier. To have the diagnosis later is much harder on you and the child. He's young. You don't even have to tell him yet. Mine didn't realise until he was about 9 when he suddenly clicked he was 'different' and it really helped him to know why. He is now, aged 15 watching the TV shows on at the moment and offering some very interesting analysis! The one thing you must realise is that whatever the diagnosis, just like ordinary people, all ASC sufferers are completely different. What they mostly all have in common is a high anxiety level and its all about managing that. Get that right and the 'quirks' get fewer and lessen in intensity.

All the best.

thisisyesterday · 28/04/2010 21:08

thanks flyingmum

is it best to go through the school with my concerns? or to the GP? the GP I saw last said i HAD to go via the school but that can't be true can it?
she also told me that she couldn't refer ds2 for a hearing test and that i had to see the HV instead, which i later found out was a lie, so i def won't be seeing her again lol

i worry that school won't want to help because right now he is coping ok there and i don't think they necessarily see the things we see

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moosemama · 28/04/2010 21:42

Hi thisisyesterday.

Dh and I went through all the feelings/thoughs you describe whilst trying to decide whether or not to go for assessment with ds1.

I was exactly the same, as although I 'knew' there was something wrong, I was also sure that whatever it was, it wasn't severe and maybe we should just try our best to support him rather than put him through an assessment process.

He too coped well in infants and academically he was fine, with just the odd wobble in September when he had to settle into a new classroom and get used to a new teacher etc.

Like you, we were worried about him being 'labelled', and wondered if he was better off just being thought of as quirky, especially as he seemed to be coping well at school.

Eventually I posted about our dilemma and got some wonderful advice from the lovely people on here and in the end decided to go for the assessment.

What clinched it for us was that he started coping less and less as his class was being prepared for going into Juniors (so at the end of year 2) and then really struggled when he went into year 3 and actually entered the Juniors . At that point it became obvious that he was going to need extra help to cope with the level of independence that is expected of them in Junior school compared to the infants. He also found it hard to cope with going from one dedicated class teacher to having 8 different members of staff teaching him at different times over the course of a week. (I have since found out that a high proportion of assessments are done on children when they go into Juniors at around 7/8 years old.)

He doesn't need a lot of extra help, but definitely needs support around organising himself, his books, sports kit and knowing where he should be and when etc. We did think that he might get used to all that eventually and settle into it, but realised that if he didn't/couldn't there was absolutely no was he would cope in senior school without a formal diagnosis and proper support plan.

Once we had decided to go for the assessment, we asked to see the gp at our surgery who specialises in paediatrics and went to talk to her without ds to discuss our concerns. She was lovely and agreed to refer him to a paediatrician. She asked us to prepare a briefing letter for her to send along with the referral request, detailing a bit about ds's history and what our main concerns were. We were seen less than 6 weeks later.

We saw the paediatrician with ds in January, he spent half an hour reading our briefing notes, then sat and chatted with us for about two hours, at the end of which he gave us a verbal dx of Aspergers (basically he said that he felt a dignosis of Aspergers would be appropriate, but that his feeling was that ds is extremely high functioning and only just on the spectrum, if that makes sense) and referred us on to the local multi-disciplinary ASD assessment team for formal assessment. We have just received a letter telling us he will be seen in 12 months time. He also had us do the CONNERS questionnaire to rule out ADHD (although he said he was pretty much 100% sure ds doesn't have it) and raised the question of dyspraxia, which is something we hadn't considered and didn't fully understand. Since researching it further though, we are now aware that the end result of the assessment could even be dyspraxia rather than ASD or dyspraxia with ASD as the two have a lot of similar traits.

Anyway, I digress. I think we really resisted going for diagnosis as we felt we would be labelling him and making his school years harder. Dh was particularly anti and it took me a long time to talk him round.

In reality though, it has been the opposite. Since getting the verbal dx, the school has tried very hard to help ds (they haven't always got it right - but they do try and they WANT to help) and we now have good lines of communication with the head, the SENCO and his teachers, which has made all the difference to him on a day to day basis.

We do feel better now that we are being proactive in doing something to help him and that alone is better than spending sleepless nights worrying about what the problem is and how we can help him.

Whether or not he ends up with a formal diagnosis is yet to be seen though.

At the end of the day its your choice to make and I don't think there is any right or wrong answer, as each case is unique as is their family situation etc.

Sorry to ramble on. (Tis my way I'm afraid. ) I hope I have said something helpful/useful in there somewhere and wish you good luck with making your decision.

thisisyesterday · 28/04/2010 21:49

moosemama, thank you for taking the time to write all that, it really is helpful. it's reassuring to know that other people go through the exact same thought process

I think part of me is scared that they'll say there's nothing wrong and i'm just wasting their time
the other part of me is scared that they'll say there IS something wrong!

it's interesting you talk about dyspraxia, because my mum and I have often remarked on how similar DS1 is to my brother. My brother is dyspraxic! back when he was diagnosed I think it was seen mainly as a physical thing, although they were aware of some of the sensory issues too, but now I think it has become quite closely linked with ASD hasn't it?

I think I might pop into our surgery tomorrow and ask if there is a GP who is particularly good on children. I have no idea who to ask for as we so rarely go!

this parenting lark is hard isn't it?

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moosemama · 28/04/2010 22:11

You're welcome. I'm just glad my verbose posting style didn't scare you off.

I totally get where you are coming from. Scared of getting a dx and scared of not getting one all at the same time. Its so confusing trying to work out what to do for best.

Definitely ask to see a different GP, especially if they have one who specialises in paediatric patients. It made a huge difference to us when we found out which one of ours was the best one to approach.

We found The Dyspraxia Foundation website really useful when we were looking into the possibility of ds having dyspraxia.

thisisyesterday · 06/05/2010 10:52

Thought I'd offer a little update. went to see the GP this morning, she was really lovely and listened to all my concerns (although since remembered lots of things I wanted to say but didn't) and why I think it could be Aspergers

She's going to call the school nurse today and talk to them about it and then go from there. She seemed hopeful that this would end in him being referred for an assessment and said she would write a supporting letter for that too

so now we wait!

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