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What best to do for DS probably Aspergers

10 replies

Mumfun · 16/11/2008 09:43

Have chatted on here before previously about DS. He did have behaviour/social issues in nursery. And ed psych saw him and Aspergers was mentioned.

Now he is almost 5 and in reception. Behaviour has been good but tailed off a bit recently. But social issues have come majorly to the fore. He has no friends at school and is stubborn so also says he is happy playing on his own.

I think it is likely he has Aspergers now on balance. School have arranged for the Ed psych to again observe/talk to him and then have an hour with me afterwards - Ed Psych, his teacher, SN coordinator and me.

What I wanted to ask - what should I look for from thsi appointment and what should I be doing for DS myself.

Should I

  1. Try to get referral to developmental paediatrician or now or maybe later

  2. What should I want the school to do? I think DS needs major coaching as to how to interract with other kids - he seems not to know how to do it at school but is better out of school with kids he has known for a while.

They are putting him in a small group of 4 to do turn taking and some other social skill stuff but TBH DS has not got problems in taking turns and a number of the things they are doing - it is the actual soft talking to/reacting to other kids where he struggles.

What are the best resources to help a child learn social skills? I know the school do social stories but I think DS needs a bit more than that.

  1. I have told a few close friends but my instinct is not to say to anyone else at present. Or do you think it helps the child that others are aware. I havent said anythibg to DS himself- he isnt aware

  2. I take it I should read the Tony Attwood books - anything else? I have read a good number of the internet sites.

Thee school are supportive and he has a good teacher this year so is in a good place presently.

Any help appreciated

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Widemouthfrog · 16/11/2008 10:45

I would definitely push for a paediatric referral, even at this early stage - either through the EP, or via your GP. It sounds like he needs to learn to play with other children. Can school provide some 1:1 to help him learn these skills - maybe someone at lunchtime/breaktimes who can structure play to help him be included. Are they taking advise from an inclusion officer? This person was vital to us and coordinated all our agencies and made sure support was put into place. Can this be done through school action + (ie without a statement?). This depends on how proactive your school are. I would bear with the social skiils group. You may think he has no problem turn taking, etc, but these groups can help him learn how to initiate conversation, and listen to others, which will ultimately help him interact with his peers and start to form friendships.

You are at early days, but you obviously realise the issues already. I was at a similar stage this time last year - my DS had just started school and lots of social issues were flagged. We saw the paed before the Educational Psychologist, and both agreed he needed a statement, which we appplied for and now have. But first you will have to show that school has tried other measures that have not been sufficient to meet your childs needs.

I'm sure more advice will be along shortly

AttilaTheMeerkat · 16/11/2008 13:39

Hi mumfun,

Is your DS on any plan like SA plus currently?. Have you seen any of his Individual Education Plans (IEPs)?.

I would agree with Widemouthfrog re getting a referral from the GP to a developmental paediatrician at a Child Development Centre. Do this asap. EP cannot make a firm AS diagnosis and a developmental paed would be useful to have on side.

I would also urge you now to start applying for a Statement of Special Needs for him from your LEA. This documents is legally binding and will have far more scope than any plan like SA plus (which is also not legally binding). It will be easier to apply for a Statement now that he is in reception rather than say when he is in year one or two.

You won't likely get any 1 to 1 unless there is a Statement in place, let alone any lunchtime support.

Make the application yourself; you know its been done then (school can take an age to make such an application, also they have no right of appeal unlike parents).

IPSEA are very good at the statementing process - their web address is www.ipsea.org.uk. There are model letters on there you can use.

Would also suggest you contact the NAS (National Autistic Society) as well as they could advise re social stories and social interaction. I would also stick with the school based social skills group.

You are your child's best - and only - advocate.

amber32002 · 16/11/2008 14:53

Mumfun, I agree with the advice already given about getting a formal diagnosis and as much expert opinion as possible.

I have Asperger syndrome. I'm a married mum with a job. I've had to learn everything with no help at all for most of my life, and I won't say it was easy.

What would have helped me? Easy: Other people realising that they had to 'meet me half way', rather than making me (the one with the disability) do 100% of the hard work all the time whilst they carried on as normal or mocked me for the things I can't do. I'm really happy to help people by doing what I can to fit with their needs, but what helps is when people realise my differences and respect them. So, the school should be doing whole-school approaches to disability issues, teaching difference and respect and friendship. And enabling the friendlier children in the class to know how to include someone whose social skills are different.

In turn, a child needs to learn what other people do and don't find rude. This is hugely difficult for us, and even now I'm likely to get it wrong, as things that are 'just obvious' to others (body language, tone of voice, facial expressions, turn-taking in conversations) are completely invisible to me most of the time. That's why it needs to be a joint effort between the child and everyone around them.

We can't hear against background noise of other voices, we can't see if there's flickering lights in the room. We can't concentrate if something feels scratchy, tight or uncomfortable. Perfumes are chokingly strong for us. Those are generalisations, but they're often true. An average classroom is a battle zone for us because of all of this, not a place of learning. It needs structure, quiet. We need to be able to 'take time out' and just unwind from time to time, to think about the huge amount of information we receive from our senses all the time.

Who to tell, and when? Very much a personal decision, especially if there's no formal diagnosis yet. Go with your instincts. People's reactions are often not very useful at first (they're too busy denying it or being shocked!), so it's good to have all the facts to hand before you tell others.

Books? Have a good look at the recommended books on the National Autistic Society site, or Jessica Kingsley Publishers site. Find the ones that appeal to you, and have a good write-up about them. I like the Tony Attwoods, but some people don't. It's worth reading Freaks Geeks and Asperger syndrome for an insight into a child's life. Written by a teenager with AS, but he talks about life as a child and it's well worth reading (and very funny) (and no, I'm not on commission )

Keep asking on here - people are great.

Tclanger · 16/11/2008 15:26

This reply has been deleted

Message withdrawn at poster's request.

Mumfun · 16/11/2008 20:48

Just quickly -thank you all so much. Amber - thank you so much for your reply -you give such wonderful insight.

Attila - yes he is on an IEP and on what I think is SA plus. He just has one action to do on his IEP at present. They only give him one for a period of time. I suspect this may change with the meeting.

I dont know how to describe this but I think DS may be less AS than some others. I dont know if he needs help at lunch for example. He has less sensitivity issues than other AS people I have heard describe - for example he positively loves to travel on tube trains - doesnt mind the noise/smells etc. But he does on other occasions complain about noise/smells. It seems amazing to apply for him to be statemented as he seems so able in much of life but I completely take your points.

OP posts:
Widemouthfrog · 16/11/2008 22:46

Mumfun,

Bear in mind, how AS your DS is may change at different times and ages. I used to think my DS was borderline, but as he becomes older and is able to express himself more, he is very definitely and obviously autistic, however high functioning. It may be that you do not need a statement at this stage. I was shocked when I first saw the EP and SALT reports, as they observed difficulties I was completely unaware of. Stay open minded, get him assessed and take one step at a time.

Great to hear he copes so well though.

Mumfun · 17/11/2008 10:22

Thanks WMF - I did think about him changing with age.

I had another connected question which I forgot. DS has always eaten and slept well - no issues there. Is that likely to change with age? He is also pretty sensible ie in traffic and generally really. Would that change?

OP posts:
amber32002 · 17/11/2008 10:33

It can change, yes. Not sure of the research behind it, but I've certainly slept far less at certain times of my life, and I've had problems with foods occasionally. I've always been ok with traffic, though. Or at least, have learned to wait for a really big gap to cross in as my reaction time is pretty bad...

Widemouthfrog · 17/11/2008 14:11

My DS is fine with traffic, unless he is overloaded by something else, and then all rules go out of the window and he will just 'run' blindly. We also have a good sleeper. He eats well - extremely healthy, but it is very ritualistic, and he expects foods to look the same, and be offerred in the same order. This is not a problem until you try and eat away from home, and then you realise now strict his rules are. What we accomodate within our home routine is not always obvious until we try and take him out of it. How easy is it for someone else to look after him? I cannot leave my DS with anyone except grandparents, as he can quickly end up in meltdown - he is very inflexible.

Mumfun · 17/11/2008 14:19

DS is such a conundrum. He has so many AS traits in minor ways - the only really major ones are social, total determination that he is right and flapping/shaking. But he is totally unpicky about food and will eat happily anywhere. Will be interesting what the professionals say about him.

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