Letter from paediatrician re ASD - can anyone help Greeny and dh interpret it?

[Greensleeves]

We had our initial assessment of ds1 (5) recently - with consultant paed - and she said she would need to get a report from the ed psych and do a longer assessment with us without ds1, etc before considering an official diagnosis, but that she would send a letter to the school/ed psych/our gp first to enable ds1 to access help if the school feel they need it etc.

Our copy of that letter arrived a few days ago and we are trying to interpret it, read between the lines etc. I thought maybe more seasoned and battle-worn MNers might be able to help....

the first thing in the letter is

'Working Diagnosis: Higher Functioning Autistic Spectrum Disorder/assessment in progress'

then there's a long series of sections incorporating his history, things we said, things he did during the assessment etc, I can't bore you with it all, it's really long

Then:

'Summary: I have discussed with the Greensleeves that there are many aspects of the history that would suggest Shortsleeve could well be a child on the autistic spectrum but within the group that would come under the Asperger diagnosis. I have shared that we need to do a more detailed assessment before looking at a firm diagnosis and this will include an assessment by XXX XXXX (the ed psych) with observation of him at school and a more formal assessment with Mr and Mrs Greensleeves by myself without Shortsleeve.

I have recommended that during this assessment that the school support Shortsleeve as a child on the autistic spectrum so that ihs hearing sensitivity can be recognised, and what might be initially interpreted as bad behaviour could well be related to noise sensitivity or related to his difficulty with social interation or literal interpretation of language.

Mr and Mrs Greensleeves have been lent Tony Atwood's book about Aspergers by a friend and I have strongly recommended this to them. I have also recommended the National Autistic Society website for further information.'

I suppose what we are asking is a stupid idiotic question - because nobody can diagnose ds1 one way or the other from reading a few excerpts of a letter on an internet forum - but are we right in thinking it sounds quite likely that she will diagnose him eventually? She seemed very definite when we saw her, which surprised us, we were expecting a long drawn-out process with probably nothing at the end of it (it's not that we WANT him to have ASD, just that we want to know whether he does or not and what they are going to do about it, so we can get on with enjoying our ds....iyswim)

.

In a word -- yes. It does sound like that's her initial assessment. Even if it's not the final diagnosis, treating him as if he has Asperger's because he's very like a child with Asperger's sounds a really good strategy.

I think I like your paed!

BTW, mine is 12, and he's been so lovely this week, I feel almost like congratulating you if he does have Asperger's. Happy to be shot down if that's really really tactless right now...

not tactless at all pussin!

yes, she does seem very nice and I think ASD is her special interest.

I just find the letter quite inscrutable, and I hate that feeling of squinting over details trying to extrapolate meaning.

my ds has no formal diagnosis Greeny, so we are in the same boat, he is being given lots of support - the consultant Paed said "he had ASD traits" to us ...

we have an appointment in June wiht the clinical psych and then a few days later we are seeing the consultant paed for the second time... so possibly, ten months between seeing the paed for the first time and getting a dx (which is how long he said it would take us to get an appointment with the clinical psych.)

I hope your ds gets more support at school now.

whereabouts are you aefondkiss, roughly, if you don't mind me asking?

I hate the process, waiting etc, I feel as though we have somthing horrible hanging over us (which is daft, because ASD isn't a really horrible thing)

I found out yesterday (when I took the boys to the playground, which was full of kids from our school/nursery) that the news about ds1's possible AS has gone out on the jungle drums, one mother told me another mother had told her about it, which I find strange because I hadn't said anything to either of them

the letter contains quite a lot of things I said about ds1 in the early months, relating to eye contact, bonding etc - stuff I said candidly in response to her questions, not realising I was going to see it word-for-word in black and white a few weeks later, and that the school/GP would receive copies of exactly what I said. Naive of me perhaps, but I would have been more circumspect in what I said if I'd known. I feel as though I've done something bad to him by saying things which so obviously point to ASD.

Hope you're feeling OK about it Greeny.

Like you say - just get on with enjoying him. I bet he's fab

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ok thanks, that helps. I still feel rotten that my comments (which were so personal, I don't know why I shared them with her) have been put down in black and white for everyone to see (his teacher doesn't like me, I hate the idea of her reading things about our early bonding and breastfeeding and all that)

but you are right, I think, that she will have seen so many children, she must know what she is doing whatever I said.

We thought it sounded as though an eventual dx of AS was likely, but we are wary of jumping the gun.

I suppose I should ask for a meeting with the teacher/senco then, to get their views on the letter and what they think we can do to make ds1's time in the classroom easier for everybody.

I am sick of the sight of his teacher tbh. I'm sure she must feel the same way.

yes- that letter is not the sort of thing they send out unless they will diagnose.

She sounds very switched on. Great to make a reference about noise sensitivity to the school.

she did seem very switched on, she also seemed to like ds1, which was nice. I like him. I find it very f*ing difficult when teachers etc just don't see how marvellous he is

ok so we should be expecting a dx eventually then, and be reading up/getting our heads around it properly now, rather than iffing and butting. That's what dh thinks too.

I am in the north of Scotland Greeny.

I hate filling in forms, that thing about saying something then regretting it once you realise quite a lot of people will read it, I did that too, it just isn't a comfortable process, ho hum!

you don't like his teacher, (I had that with my dd's first primary school teacher, dd loved her but the teacher didn't really like my dd.)

You know you sound so much more positive than I was when we first saw the paed, I was such a wreck, not capable of thinking that my ds had ASD... getting there, but I still find myself hoping this is just some silly mistake by the myriad of professionals who have contact with him every week,

Ah, I'm in South Devon!

Bloody form-filling. I am going to be much more careful from now on.

I do feel fairly positive, partly because I did have my own suspicions for quite a while, and partly tbh because I have had so much support and info and positivity from friends on MN and IRL that I have been able to adjust to the idea. I've still had my moments of feeling really pole-axed though. I have periods of thinking this is just some weird stupid fantasy of mine that I have superimposed onto ds1, and I am so clever I have managed to say all the right things to get the doctors/teachers to believe it too. But really I think that is just me being narcissistic, and not wanting to admit that I am a bit more floored by the ASD thing than I like to say.

The teacher means well, but is very old-school, took over this reception class halfway through the year and just hasn't hit it off with ds1 at all. And I may well have made it worse by going in like a bull in a china shop. I'm now looking forward to him going into year 1 and getting a different teacher.

Hook up with your local NAS Greensleeves. You're welcome to come to one of our meetings if you want as well (one lot on Thursday evenings so do-able). MOst of the parents who come have children with Asprergers.

Can I ask, is the paed RR?

If so she is absolutely lovely and really 'gets' children like ours.

Although you could be in another part of South Devon and I could be barking entirely up the wrong tree, but paed's like this seem so few and far between.

I want your paed

It's so nice to have one professional who is on your side and 'gets' your child. It will make things a bit easier.

Hiya
We're in the middle of a 6-8wk assessment programme for my DS (just 3), I know exactly what you mean about thinking maybe you have fantasised it and convinced everyone else!
I came up with the theory myself about a year ago after an aborted daytrip that had me in tears, did some research and he ticked so many boxes.
There is a kind of grief where you have to mourn for the fantasy child you never had or thought he should have grown into by now. Then you get back to the job you've been doing your best at all his life and try to think about the DX as a passport to support and new ways to make life easier for the whole family (and help you all understand/tolerate/forgive your DS when he's a PITA). Now I'm kind of worrying what if he doesn't get a DX?

In some authorities you will not ever get a firm diagnosis because they don't like to use "labels", also it varies as to who CAN give the diagnosis, sometimes has to be EP, other times a specialist ASD teacher so you might need to find that out for where you are.
Sounds as if this paed knows her stuff and telling the school to treat your ds as ASD is good advice.
Often on statements it is left as "ASD type" or some such euphemism (sp?)but he points for action by the school are the important things to focus on I think.

I am a little tbh. My paed was bloody useless and just kept saying Flamechick wasn't autistic (which I never said she was), and then told me after the whole meeting that he couldn't even start to think about AS until she was 7 and knew more about language

It does sound to me like you will end up with a dx and without a length battle

I know looks wrong, but having an answer imo is better than floating around in the dark. A yay or nay won't change Shortsleeve in the slightest, but it might get him more understanding as time goes on.

"Parenting an Aspergers Child" (or child with AS) is a good book - it is aimed at older ones, but having read through it a couple of times now I can see how much help it will be in the future.

greensleeves, with regard the personal stuff you said being reproduced in b&w. during our assessment, the psychiatrist didnt send out anything to the school until final dx and then I was able to edit out what went to the gp and the school if it was not relevant to the support of ds. Could you try this if the report has not gone out yet.

sorry to hear your paed was so useless Flame, it must be very frustrating

This has to be the definition of mixed feelings - wanting a dx is weird in some ways, but it would make life easier for ds1. In fact even this letter will hopefully mean that his teacher will have to take notice of his hearing sensitivity and not just punish him for it

It is that whole mix of relief that you're not insane and people might start listening to you, and that hideous sinking feeling that something is wrong, it isn't your imagination/parenting and that nothing is going to fix it.

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"I feel as though I've done something bad to him by saying things which so obviously point to ASD."

"I have periods of thinking this is just some weird stupid fantasy of mine that I have superimposed onto ds1, and I am so clever I have managed to say all the right things to get the doctors/teachers to believe it too."

• I felt exactly the same way, as did many others here, evidently.

DS has a working DX of Aspergers, but slightly different as we requested it. Assessment team were happy to DX Aspergers, but I felt that at 2 or 2.5 he seemed more likely Autistic than AS and now (at 4.5) is def more likely AS. I suppose I felt that in another year or two, he could present very differently again so wasn't ready for a definite DX. However, I can already see (as I adjust to his working DX) that he is/does have AS.

I would imagine that your Pead is expecting to DX officially on the results of your DS's assessments.

BTW, am at South Devon !!!