School thinks DS has AS....LEA disagree

[reliantrobin]

Hello,

I had a pretty worrying meeting last Friday with DS's school. He started reception in September and had difficulties lining up, taking turns etc. They have built up his time gradually and with 1 to 1 support he has got over the initial problems and seems to be settling in well.

An LEA specialist in comminication observed DS a few weeks ago and thought that his issues were behavioural.

However, the school told me on Friday that they do not agree with the LEA's conclusions. They strongly suspect that DS has AS. The main reasons for this is that he has "responded to their strategies too quickly" for his issues to be simply behavioural and also that he has problems adapting if there is a sudden change of routine.

I have looked into the triad of impairments and can see that he fulfills some of the criteria. But he doesn't have motor problems, he makes good eye contact, no language issues, good imagination etc.

This is causing us a lot of worry. I wonder whether the school are right to go behind the LEA's assessment (they now want DS to see an ed psych). They have also asked the LEA to do another observation.

I'm starting to feel that we need to see a developmental paed now to rule out a DX of AS...but this will take a long time on the NHS or cost a lot of money if we go privately.

What would you do?

Thanks.

You said:
"I have looked into the triad of impairments and can see that he fulfills some of the criteria. But he doesn't have motor problems, he makes good eye contact, no language issues, good imagination etc."

It would be worth seeing a paed/psychiatrist for a full assessment with a view to AS. It might seem to you that DS has no problems in these areas but dig below the surface (often not too far down) and you may find that there is indeed impairment here. Remember, it's about impairment, not a total absence of these skills or abilities. Eg, impaired imagination doesn't necessarily mean that a child can't play imaginatively, but it usually does mean that they have difficulties with social interaction because they can't anticipate or read what another person means or says. Similarly eye contact can be TOO intense, rather than failure to maintain, language too can seem appropriate especially where a child has advanced vocabulary, but even that can be an indicator. There's a lot more to speech and language than meets the eye and it takes a skilled professional to pick up on it.

I would agree that you should see your GP or HV and ask for a referral. You will probably wait three or four months for initial appointments and it can take a long time to get a diagnosis but at least you'll get some answers. Can't help on going private, sorry.

hello reliantrobin,
As someone who has tried both the NHS and going private my feeling is that it can do you no harm to go on the waiting list to see an NHS psych/paed and then if you gont get anywhere you can always go private.
The good thing in your favour is that school is agreeing and saying there are problems which in our case with DS the school wouldnt acknowledge that there were any problems and we had to resort to going private in the end, but we saw a good clinical psych through the NHS and although she didnt dx DS she did confirm that he had autistic traits which has helped us in our fight with the LEA

HTH

Some of the language issues that define AS can be pretty well hidden to non- expert observers, so speech therapy need to give an opinion. Motor issues are of course not part if the triad but can be present (my DS gets through a pair of shoes a month minimum because of his gait) and not all AS kids fail to make eye contact, my lad can be selective.

If you contact the National Autistic Soicirety they will send lots of information to you, and also give you details of local private specialists you can talk to RE cost / school acceptance of their diagnosis (it can vary). Get on the NHS waiting list too; even if LEA won't accept private a good Consultant can use thier findings in making a diagnosis (ours did)

Thanks for your replies.

I tried ringing the NAS helpline today but they were closed for training!

Peachy, can you give me any examples of the type of language issues indicative of AS - that would be a great help.

Thanks

RR

Language issues: this is my 7yo ds, who has pragmatic language problems (something also typically associated with AS), talking to his new headmaster. Note how the answers just miss the questions.

HM: So, what year are you in at school?

Ds: I go to XXX School. The headmistress is called XXX.

HM: What year are you in, though? Perhaps your school doesn't call them "years"?

Ds: On the board it says ... [long pause] My class is called Y3D. That means I am in Ms D's class.

HM: Would you like to go up to your classroom here? Would you like your mummy to go up with you, or will you go alone?

Ds: [Pause] Mummy, I'll follow the instructions.

Hi Reliantrobin. My ds has AS diagnosis. He can make eye contact and speaks fairly well (though can be a bit stilted). He also enjoys imaginary games. Howevever he has temper tantrums, does not understand taking turns, can't do things like lining up up or following simple instructions. Its quite subtle really and I spent ages reading books thinking "he can't be AS because he does not take everything literally" or things like that. However his problems at school got more pronounced and in the end I felt it would be best to bite the bullet and get a diagnosis. The paediatrician said it was a broad spectrum and ds defiantely fitted into it.

Schools and ed psychs can't diagnose and they come at things with a particular angle. If you think your ds might have AS then I really think its best to pursue a proper diagnosis. Why go private? The waiting list shouldn't be much longer than six months and in the meantime you can pursue things with the ed psych and read up about the syndrome. That has helped immensely and the school are now aware of ds's problems. The main reason for getting a paediatrican's diagnosis is that it will help with getting a statement and also helps to say to schools "DS has Asphergers" then they can access appropriate reading material so they can deal with him better.

Good luck, its not easy having an AS kid as I know but ds does say the funniest things which make us all laugh (who says they don't have a sense of humour - another myth about AS kids!!!)

Hi Caroline3,

I have to say that your DS sounds spookily like mine!

I guess that I am at the stage you described - reading books and articles which seem to describe parts of his behaviour spot on but not others. It's always difficult though I think to try and stand back and analyse your own child.

My DS found it impossible to line up and take turns at school to start with. This seems to have greatly improved though. Do you know if that would be expected of a child with AS?

Thanks

RR

Hi reliant, sorry being off line for a few days.

Not being able to line up is an AS sort of thing, it all is part of ds not being able to work out what to do in a group situation.

Guess what - today ds went and lined up WITHOUT BEING TOLD!! This is a major breakthrough. He also went and chatted to another boy in his class (not his best friend) about halloween. He sounded like he was having a normal conversation. This has really cheered me up.

We went to a theme park yesterday and ds enjoyed it, but would only go on some rides (not necessarily the least scary ones). He got so excited and was flapping his hands quite a lot. However I think it is important to do "normal" things with him, I know I am really lucky that I can given the problems some people have. There were quite a few kids there with special armbands who were going to the front of queues (presumably autistic or something similar). They all looked like they were having a great time as well so it is good to see that some places are waking up to special needs now even if it is a slow process.

Do post again about your ds - its good to exchange notes with other parents I find.

Orry been ill for a few days!

langauge can vary, but Sam has formal pragmatic speech with literal understanding

the example we got in his speech therapya ssessment was

ST: what do you like to eat?

S: Chicken skin and cheese and pickle sandwiches

ST: I like cheese and onion sandwiches, do you?

S: I am nto interested in onion, therefore I would not like them

it's often referred to as Little Professor speech. He ahs trouble understanding things like 'raining cats and dogs' and such, though he can work them out with picture clues. he also fixates on small details- apparently there was a pic of a lady in horse riding gear going golfing, and when asked what was wrong in the picture, sam answered that she had a very tiny hole in her bag (actually a glitch in the photo).

Don't assume that all AS kids are behind with language though, Sam is (apparently) on the 90th centile for his age for most langauge use, and has a verbal age of 10!

Thanks Caroline3/peachy. Glad that the theme park went well.

The communications lady from the LEA will observe DS again next Monday. I will be able to have a quick chat with her afterwards.

If she does recommend seeing a paed, and if we do get a DX of ASD, is it likely that we would succeed in getting a statement?

Thanks

RR