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Got an exact diagnosis today for ds

21 replies

beccaboo · 24/05/2005 17:47

We went to a meeting at the CDC today, a follow-up to the dx of ASD in January. After about half an hour of discussion, we were told that the official dx is going to be Aspergers. We were so surprised! We questioned them about HFA at the previous session and they said no, he couldn't be classed as high functioning.

It was a different person we saw today, a specialist SALT who can dx. Maybe they've changed their minds because they've had the IQ test results back, I'm not sure. I think he's very young to get an AS dx though, he's 3 years 5 months. Anyone else been dx-ed at this age?

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Fio2 · 24/05/2005 17:54

what a day for you then beccaboo! i always find these kind of appointments a bit of a whirlwind tbh. Hope you are feeling positive. i am sure someone who knows about Aspergers will be along soon to reassure you x

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Socci · 24/05/2005 17:58

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maddiemo · 24/05/2005 18:10

A boy in my sons class got an Aspergers diagnosis at the age of 3. His mum knew it was the right dx as she is a SENCO with a lot of AS experience.

Socci I thought that an AS dx is given when there are no significant learning difficulties and that high functioning autism is the dx when there is a degree of learning difficulty.

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JakB · 24/05/2005 18:32

How do you feel love?
I think there was a debate about aspergers versus high f autism on another thread. Isn't it to do with language delay? (ie: it is present with HF autism but not with AS)?

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coppertop · 24/05/2005 18:52

I'm glad you've finally got a definite answer beccaboo.

No-one seems to be sure about the difference between HFA and AS. Ds1's Paed gave us a verbal dx of AS but a written dx of HFA. He has no learning difficulties but developed language/speech fairly late. Ds2's Paed talked about possibly giving ds2 an official dx of AS when he is re-assessed sometime after his 3rd birthday. Ds2's language had started to develop by the age of 2yrs after some early intervention. Ds2 has no learning difficulties either according to the Psych and Paed.

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monica2 · 24/05/2005 19:19

Hope your are feeling ok beccaboo, think I confused everyone on the other thread with my ramblings on differences between HFA/AS, but for us, the diagnosis of AS(not until age 7) was a tool to access the well needed support and help for dd, all of which is the same (and adapted to the individual childs needs), whether the "label" is HFA/AS.

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Socci · 24/05/2005 20:43

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Davros · 24/05/2005 20:44

maddiemo, that's not correct as you have have autism but no learning disability. As for differentiating AS, I dunno!
Becca, hope it helps you somehow and hope you're not feeling too battered.

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maddiemo · 24/05/2005 21:23

I suppose you can get autism without learning difficulties but surely then you are more hfa?

I think I am getting more confused.

Socci My son is classed as having moderate LD,, based on IQ and assessments carried out which gave him an IQ of around 60{I can't remeber exact number now.} However IQ testing for people with autism isn't easy because they tend to have uneven profiles.
My son is able to read simple ORT books and is good at number work. However he has considerable problems with language{constructing replies which make sense] and comprehension and memory which make him appear less capable than the level of reading etc he is at.

I am not sure that makes any sense either.

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Davros · 24/05/2005 22:30

Sorry maddie, that sounded a bit categoric. I believe you can be dx ASD without learning disability, e.g. Temple Grandin who I think is classified HFA but not AS. At the moment I believe there is no such dx as HFA, it is either ASD or AS, all those other versions, e.g. autistic traits, on the autistic spectrum are all covered by plain old Autism or ASD. I saw something recently about a new diagnostic tool that has been tested to differentiate more within the spectrum but I think DSM IV is Autism/ASD and nothing else unless its AS.
Sorry about that, went off on one a bit!

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Socci · 25/05/2005 08:21

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Socci · 25/05/2005 08:22

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beccaboo · 25/05/2005 08:29

Thanks everyone. Actually, I don't feel battered at all, I feel slightly elated. I think that this is the correct dx for him, and they were so positive about the prognosis that I feel like a weight's been lifted off my shoulders. I know it's probably a temporary state of affairs but I'll enjoy it while it lasts!

He was referred age 2 because he only had a handful of words, but now age 3 he has 'phrased speech' as they call it (talking in phrases). Apparently this means that although he did have delayed language to an extent, it is not enough to be clinically significant.

If I remember correctly what they said, it's this, combined with his intelligence being in the normal range, that makes the dx Aspergers.

By the way - Jimjams if you're reading this, the SALT we saw is a specialist, she only deals with ASD children and has been working in the field for 20 years. What a wonderful woman.

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maddiemo · 25/05/2005 09:56

Don't worry Davros. Thats fine, it is so hard to categorise and again I think dx is dependent on where you live.

beccaboo Yes I would say that in my sons case his learning dificulties are related to language rather than true difficulties with learning. He is also very reluctant to write as I don't think he can see the point of it.

I am glad you feel relieved, its like you can move on a bit and decide what to do next.

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beccaboo · 25/05/2005 10:12

As i understand it, when a paed says 'learning disability' they mean an IQ below the normal range.

Like you say Socci, this is difficult to test. Also, in ASD kids there's often a big discrepancy between verbal & non-verbal IQ and you end up with an average of the two.

The person who runs our local support group says that ASD is itself a learning disability, and I think I agree with her. If you can't access the normal channels of learning - social communication being an important one - then you're not going to learn at the same rate as your peers.

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dinosaur · 25/05/2005 11:11

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Jayzmummy · 25/05/2005 11:18

We were told the same as dino.....J had significant language delay so therefore can not meet diagnostic criteria for a dx of AS and can not be dx with HFA because he has a low IQ.....so hence the dx of Autism which we received.

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KarenThirl · 25/05/2005 12:05

Hi Beccaboo. Glad you've got the dx and are coming to terms with it. Categorising learning difficulty does seem to be a tricky one. At J's parent's evening last Nov I suggested to his teachers that he had a learning difficulty because you simply can't teach him anything that he doesn't want to learn, and they agreed with me. However, he's just completed his IQ/psychometrics and although I haven't had the report back his IQ was 'high'. So does this mean he has a LD or not? Who knows?

BTW, I was also told by J's psych that the difference between AS and HFA is language delay, which is usually absent in AS.

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artymum · 25/05/2005 12:14

My son was diagnosed as having aspergers at about 2.5 years. He is 7 next month. In our experience although he has made significant progress, it gets HARDER for AS kids as they get older, much harder. When children are toddlers, they all have their unique quirks, so AS kids don't stand out too much, although they are much more rigid and don't play co-operatively & don't communicate well. As they get older, the gap between normal and AS grows rapidly and very careful intervention / help is needed to stop AS kids getting socially excluded.

By 4.5 my son had retreated into an autistic state as he found school so overwhelming. He started having daily toilet accidents, started self harming and had symptoms of severe depression. (And of course learnt nothing except coming home saying, I'm dumb, I'm thick). The head teacher blocked all attempts to get him help, and I had to deregister him from school in desperation. I've been home educating him for 2.5 years now, and it has changed his life. I have been able to tailor a learning environment which suits him, something mainstream primary was not able to. His doctors and health team did not recognise him after 6 months at home, he was so much more responsive and happy.

I would love to have him at school, but there is nowhere suitable locally. Him doing well in a very controlled environment means that its far harder now to access the level of support he would need at school to continue to progress, sigh. He would have to go back into a mainstream class & develop all the problems he had before, all over again before he would get help. (The Ed Psych's opinion).

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macwoozy · 25/05/2005 13:05

I'm just looking at the psychology report from when my ds was first diagnosed a couple of years ago. It states that my ds seems to fit the criteria with an ASD, but that the psychologist is unsure whether an alternative description such as Aspergers might be more accurate. He suspects that he has some elements of both. Confusing eh?

At the time of the meeting I had asked if he had Aspergers, but he informed me, as kindly as possible, that my ds wasn't intelligent enough to have Aspergers. He was 3 at the time, but phschometric tests showed his intellectual age being 10 months below. At the time his receptive and expressive language was 'significantly impaired'.

Just lately, however, he's emerging as an intelligent little boy, still has problems with communication but his vocabulary has vastly improved. The latest meeting with his SALT described him as having ASpergers.

I read in 'ASpergers Syndrome' by Tony ATTwood, that there is a distinct profile of language skills recorded with Aspergers children. The pattern often (but not always) includes a marginally late onset of speech but when the child does learn to talk parents are exasperated by the incessant questioning and one-sided conversations. That is exactly what my ds is like, so it seems that his diagnosis is changing the more he's progressing.

I've often wondered whether a different diagnosis will have any drawbacks in terms of the help and support he'll recieve.

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heartinthecountry · 25/05/2005 14:00

beccaboo - glad you are pleased with the diagnosis.

I've still got your book by the way .

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