Another possible Aspergers thread - advice please!

[woofie]

I've been lurking on the SEN boards for a while now reading anything that comes up on AS, as I have concerns about ds1 that fluctuate in severity, but which I can never quite get rid of. I think the time for action might have arrived... While I'm not expecting a diagnosis from any of you, I'd really appreciate any views on whether my description sounds like AS to you and how you went about getting help.

So, ds1 is 4:7.

He's a very cheerful child - we don't have to deal with major tantrums or behavioural problems. He will almost always do what he's asked, and seems to like to please us and other adults. He will sometimes get a little upset if someone else does something he always likes to do (open the front door when we get home, set the microwave etc) although he's better able to deal with this as he gets older.

His language has always been good, and he always seems to have hit the milestones on time. It's only as he gets older that it seems, well, a little different from his peers'. He has a very wide vocabulary, which he doesn't always use appropriately. The way he constructs sentences can be really convoluted, and unfamiliar adults often struggle to understand him. His speech is quite unclear, and he has a fairly pronounced lisp. He often uses a squeaky 'singsong' intonation, which was cute when he was younger - but I guess I thought he'd have grown out of it by now.

SOcially... he's very happy in his preschool setting, and looking forward to starting primary school in January. He is definitely interested in other children, although he just doesn't seem be able to interact with them 'typically'. If he decides he wants to play with another child, he might well go about it by tickling them a lot or chasing them wildly... Sometimes this goes down OK, and sometimes other children are clearly a bit freaked out. He used to always insist on going first, but is getting much better at waiting his turn. Other children seem to like him, but he doesn't really have a bona fide friend yet (apart from another little boy whose mum and I have worked very hard at getting them together every week... Their relationship is funny - they hug and say that they love each other, but don't really interact or 'play' together)

He does very little imaginative play. I've been trying to do some with him recently, and once the scene is set (eg let's play farmers), he will go with the theme and enjoy it. But left to his own devices, it's numbers, maps, puzzles, computer (would spend all day on it, but is rarely allowed). He's hyperlexic - was reading words at 2 and 'fluently' by 3. I've always been concerned that his comprehension might not be up to his decoding, so have tried to encourage this with gentle questions when we read together. He could definitely tell you the basic narrative of a story he'd read independently, but I don't think he always 'reads between the lines', or gets inferences that other children might. He's fairly literal in other words.

Apologies for the massive post. I'm just unsure as to the best course of action. He's happy and bright, and I don't want to pathologise him if there's no 'problem' in terms of behaviuor or wellbeing. On the other hand, I was expecting that several of the traits I've described would have resolved by now (eg speech, strange interactions with other children) and if I can access early intervention that would help him then clearly I'd like to. Do you think I should seek an assessment for him and if so, where do I start? GP?

TIA

I would see the GP with a view to getting a referral to a developmental paediatrician. Do not take no for an answer!. There are things here (i.e speech, being very literal, his interactions with other children) that require further investigation.

See a "label" for him as a "signpost" to getting him more help, you are not pathologising him here by seeking more answers.

I did think AS when I read your post but of course you will need proper confirmation from a person like a developmental paediatrician.

What does nursery think?. What have they done re his speech and socialisation difficulties?.

How do you think he will manage at school?. He and you by turn may run into problems so you need to consider that now. It may be a step too far for you to consider at this stage but I would think ahead and start applying asap for a Statement of Educational Needs for him with regards to him receiving extra support at school (A statement can also be issued for social and communication needs as well). IPSEA is a good website regarding SEN and statementing www.ipsea.org.uk.

THanks for your reply attila.

I'm a bit glum, but not surprised, that my OP said "AS" to you - clearly my niggles are not going away, and I think deep down I have an instinct that there is something that needs to be addressed.

He's been at his preschool for 14 months now. It has an excellent reputation for SEN, with several specialised teachers for ASD and language disorders. Nobody there has any concerns whatsoever. I've raised my concerns about his socialising - they say that he does like to play independently, but not unusually so given his age, and that he will interact/negotiate with other children when necessary. His group teacher also says that he has become much more interactive over the last year. He spends an hour a week in with the headteacher doing 1-to-1 problem solving puzzles - sudokus etc, which he absolutely loves. Re his speech, again it's not bad enough for them to flag it up to me, but I know a bit about language development, and am sure that there are some (fairly mild) abnormalities in articulation and pragmatics. It's just all very borderline... I think they see him as a lovable eccentric!

I think seeking a statement probably is a step too far for me at the moment, though I'm sure it would be a sensible thing to do. I need a bit of time to get my head round things, and a referral to a developmental paed is clearly a good place to start.

THanks again.

My now 13 year old was very like your child at a similar age.

He is AS. He is also fabulous. Kind. Decent. Loving. A Good Soul.

But for many years we denied his diagnosis and possibly inhibited his development by doing so. When (aged 11) he finally received a diagnosis (and a statement, and specialist education) his relief was palpable.

See GP. Ask them for a referral to community paed/communication disorder team. These provisions vary according to local provision. You plainly have already researched thoroughly, and already know where you are going. Well done. You are already many steps ahead of where I was. It took me about a year to get diagnosis. It may take you longer, but you have started younger, and that is important.

Good luck!

I think it's worth asking for an assessment.

Have you had an opportunity to speak to the staff who will be teaching him in January? If not then it's a good idea to ask for a meeting to dicuss your concerns.

I would also mention the hyperlexia to them. They will hopefully concentrate on slowly building up his comprehension skills, which in turn should also help with his use of spoken language.

The environment and expectations at school will be different to those at pre-school. Starting school can often highlight the issues a child may have, so it's helpful if the staff are aware that your ds might find things difficult.

Good luck. :)

Hi Woofie,

Re your comment:-

"I think seeking a statement probably is a step too far for me at the moment, though I'm sure it would be a sensible thing to do. I need a bit of time to get my head round things, and a referral to a developmental paed is clearly a good place to start".

It would certainly be a sensible thing for you to apply for particularly if your DS is diagnosed with AS or is somewhere on the ASD spectrum. He has additional needs that an Infants school may not be able to fully address hence my suggesting that.

Am v glad to read your DS is at a good preschool and note they have specialist staff. This will not always be the case particularly when he enters the state system and you and your son may well run into difficulties as a result of any additional needs he has not being met.

Coppertop's suggestion of talking with the school staff well is helpful on many levels.

I would also urge you to get a statement in place asap and particularly before he starts proper schooling in Infants.

Thanks everyone for the replies. Sorry I haven't managed to get to a computer today until now.

retiredgoth - yes, ds is all of those things too. He's very loving and affectionate, kind, trusting, funny... I guess that's one reason why I've been hesitant about seeking diagnosis - but really that says more about my stereotypes of ASD I suppose. Should know better. Can I ask what form your ds's specialist education takes? V glad that getting a diagnosis has been such a positive experience for your family.

Coppertop - yes, that's a good point about approaching his reception teacher. I've thought about it a lot, but have put it off so far, on the basis that I don't want to cloud her judgement of him, but rather let him make his own impression. The head of his preschool has been in touch with them to let them know about his reading, number skills etc - according to his preschool he is simply very advanced in 'academic' skills, but I know from reading other threads that this is a common impression of young children with AS - it's as they get older and their social/pragmatic skills lag behind that the problems become more obvious. So maybe I should contact his school now. Fwiw, I think he'll thrive at school in many ways. He loves the routine of preschool, music lessons etc - loves to know what's happening on each day of the week. A lot depends on how he can negotiate his social position with his classmates I suppose.

Right attila - I will make an appointment with the GP today and look into the statementing process further.

Thanks again, everyone. Feeling a little teary and daunted by it all, but it's great getting some input from people who know what it's like. Whenever I mention it tentatively to rl friends, they all say that he's fine and I'm worrying about nothing. But the niggles don't go.

He surprised me today with an imaginative conversation... Someone asked what he wanted to do when he grows up last week. He replied that he wants to be Father Christmas's mapreader Over lunch today, he reassured me that he'd still come and visit me when he was living at the North Pole, but that he'd have to talk to me via Skype because he didn't think FC had a telephone...

Hi Woofie, your ds sounds lovely!

I echo the advice that the others have posted on this thread, it's very good.

I also wanted to add that I found the dx process scary and full of uncertainty, most of all I craved reassurance that 'everything would be ok' in some shape or form however, I think it's about re-framing and seeking support.

This is a very supportive board, someone always has a helpful suggestion or encouragement or whatever you need really so you won't be going through the process in a vacuum.

My ds2 was dx about 3 yrs ago, he is puppy mad atm and delic; getting a dx has been extremely positive for him and us x

Thanks for the v nice post helensmelons. It's good to read that going through the assessment/diagnosis process has proved positive for many of you. Does your son receive extra help at school?

I should add that one reason why I'm perhaps a little hyper-alert to every possible indicator is that I strongly suspect my brother (32yo) is undiagnosed AS. He is very 'bright' - went to Oxford to study classics (excellent decoding skills like ds1!), but dropped out after 2 terms because he just couldn't cope with the social side of things. Since then he has never found his feet in adult life. He has moved abroad, and sadly we're very really in contact. I brought up AS with him tentatively a few years ago, but he smiled and nodded and didn't take any notice at all! As I remember it, there were more obvious signs with him as a child (rocking, shutting himself in his room when visitors came to the house, even as a young child), but of course ASD was very little recognised back then. So... I suspect that I have a family history, and am very keen not to see history repeat itself. So assessment it is.

rarely in contact

Yes, Woofie, ds2 attends a specialist speech and language unit attached to a mainstream primary school. He also has had severe s&L difficulties; however is progressing very well, he is now in P6 (aged 9) and it would appear from his education plan that he is no longer having individual 1-1 sessions but all group work - particularly focusing on emotions - understanding his own and others; so it should be very interesting.

I also suspect family history with us as well. I have found it so helpful having a dx and nowadays, certainly, where I live, there seems to be very good support for students at college/uni on the spectrum.

Tony Attwood has written a good book about aspergers and also if you can get hold of a copy of Coping, A Survival Guide for People with Asperger Syndrome by Marc Segar is also extremely helpful. If I can find the link for that I will post it x

Thanks helensmelons - yes, I've actually got a copy of the Attwood book sitting on the shelf, which I haven't got round to reading properly yet. I'll google the Segar book. It sounds like your ds is receiving excellent help.

Ds1 would, I'm sure, not qualify for a specialist s&l unit. It's more little oddities than obvious difficulties, plus the fact that he doesn't always picking up on social cues re when to speak etc - but it's difficult at this age, because the same could probably be said of many NT 4 year olds. He has an unusual turn of phrase, and doesn't always articulate clearly when he's carried away and talking quickly. But he can make all of his sounds (with the exception of lispy /s/ /sh/ and /th/). I think his comprehension is generally ok. He can certainly hold a conversation with adults, although they will sometimes have to ask him to repeat what he's said. He does have 'selective hearing' - doesn't always tune in when someone's talking to him - but again fairly common at his age.

I think it's more social interaction that concerns me - does anyone have any experience of intervention/support at school with this side of things? And how successful do you think it's been?

THanks