After Paed appt. Should I get a "report"? Questions re AS v HFA.

[bear73]

Hi

I posted on here last week as my dd (6) had her Paed appt. I have long suspected AS and he agreed when he asked me what I felt it was although thinking back he agreed when I said I felt she had an ASD and would be more towards the High Functioning end. When I said Aspergers he said something like "well you can call it that, some people prefer not to label it" - or something like that.

I didn't think much of it at the time but I was talking to a friend who said was the diagnosis for HFA or AS. Now, I assumed AS as he didn't correct me and from what I have read since they are both very similar but in HFA there is a language delay and in AS there is not. My daughter has exceptional speech and was talking sentences at 16 months so again I am leaning towards AS.

Also, should I be getting an actual report from the Paed? He mentioned getting an appt to go back in June but nothing about a report. I suppose i would like to have a diagnosis in black and white in front of me. She already has Sensory Processing Disorder, Dyspraxia and Hypermobility. They were all diagnosed through the OT at the same Children's Centre, but again never had an actual report.

Should I be getting all these things down in writing? I know Paed is contacting the Advisory service and my GP but no idea if I will be sent copies of letters.

Is it too early to call his secretary and ask if I will be receiving some kind of report? Appt was last Monday.

Thanks
bear
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That is a good idea. We are usuually copied into all letters to the GP but its a good idea to check informally with the secretary just in case it is not common place.

Thanks magso. Wasn't sure if it was too early to expect to be sent a report, don't want to nag them!

If anyone has any info re the HFA v AS thing then I would be really interested.

Thanks
bear
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Bear, you're absolutely right about the supposed big difference between HFA and AS. In AS, we talk at about the right time as young children, and in HFA there's speech and language delay. We usually grow up the same by the time we're adults though, so a lot of the specialists are wondering if it's even worth labelling the two things differently, or whether they should call it all HFA. More next year when the Big Chiefs have met.
I'd say you need something in writing, yes. Worth asking.

Thanks amber. I didn't think much of it at the time of the appt as I was happy that someone could see what I saw and we were on the same wavelength.

It was only when my friend (who has a son with ASD) asked if it was HFA or AS that I got a bit confused and realised that without a report or offical diagnosis I'm not 100% what the Paed thought.

I have written a short letter to his secretary just asking if I will be receiving some kind of report/diagnosis and also asking to confirm the DX of AS as opposed to HFA. I just said both were mentioned and I always felt AS but wanted to check as she didn't have the language/speech delay assocaited with HFA. Hopefully that will be OK.

I just want to be sure, I know myself she is AS but it's good to know everyone understands each other and there are no misunderstanding with something as important as this.

I hope they don't feel I am being pushy so soon after the appt. Is it usual with after an assessment from an NHS Paed that you get a written report/diagnosis?

Thanks
bear

With the NHS, who can tell what's 'usual'

Not sure, to be honest. I just think it woud be correct and polite of them, so I'd ask for one whether it's usual or not. I'm sure it's fine to ask this early.

Thanks amber. Will post letter tomorrow and see what kind of response I get!

bear
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My son's doctors seem unwilling to pinpoint his diagnosis beyond 'very mild autism'. Partly I think that's because there's a lot of disagreement about the criteria for diagnosing those terms, and whether those separate terms should exist at all (like aspergers, atypical autism, HFA). Incidentally, my son's psychiatrist told me that those with Aspergers sometimes do have a language delay - I'm guessing this is because they use the Gillberg criteria (as it's his unit we attend).

It's interesting you say that about Gillberg criteria - he dxd DS1 and he told us that it was impossible to predict the course of his future development or how severe his autism might be. He did say as a throwaway remark at the end that he had a hunch that he might have Aspergers which I thought was very surprising as he was non verbal (3) at the time. If you look at the original Asperger studies, most of the children did have speech delay or echolalia. At nearly five, DS1 has basic speech but not sure if anyone would think he has Aspergers.

I think Gillberg's criteria says that language delay may be present, but that there is more likely to be speech 'oddities' (repetitive, robotic speech, or speech not used in a social context?).

When your say your son has basic speech but your not sure if anyone would think he has Aspergers, do you mean that he seems less 'high functioning' than that, or that there doesn't seem to be a condition there at all?

There's an interesting interview with him here where he talks a bit about differentiating between high functioning individuals with autism and those with aspergers.
www.lookingupautism.org/Articles/ChristopherGillberg.html

Thanks, thats all very interesting.

My dd doesn't talk in a robotic way but reads in a very robotic stilted manner. She does have very adult speech and over enunciates her words and would probably come across as very well spoken. She also repeats certain words a lot to get her point across.

I suppose it doesn't matter what label they pin on it. She is at the High functioning end of the spectrum regardless of whether they call it HFA or Aspergers or whatever else. Sometimes its nice to know though especially when having conversations with other people, teachers, friends etc. If they ask about her problems it would be nice to knwo what I'm talking about!

Anyway, I will post the letter and see what response I get. I did think the Paed was reluctant in what he said, tending to veer more towards that dd fits a lot of criteria and lets add to her others problems that she now also fits criteria for an ASD at the High Functioning end. I suppose I should have asked more questions.

bear
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catski linked to an interview with Gillberg, above. Hope it's ok to put in a couple of paragraphs from it here, because it's so interesting:

"I think there is a mistake in the notion that so-called high-functioning autism is mild autism. There is another mistake, when people with Asperger's syndrome are referred to as mildly affected and therefore more sociable. My experience runs counter to that notion: ... I believe you can have severe mental retardation and mild autism. Whereas in high-functioning cases, such as in Asperger's syndrome, it is the autism which is severe. They are rightly perceived as high-functioning individuals, but some people I know with low- and middle-functioning autism are more empathetic than people with Asperger's syndrome....

(interviewer: ..people with Asperger's do have considerable language abnormalities, contrary to what is usually believed?)

CG: Of course, they often have excellent imitative language skills, and can be excellent speakers. But actually, when it comes to using language in an exchange of views, they are as impaired as low-functioning children."

Hooray for Gillberg. As I've said often, the only difference with me is that my use of language can get me into trouble ten times faster.

The language issue with AS vs HFA is a very interesting one IMO. Ds1 didn't really talk until he was 3yrs old and so has a dx of HFA. Ds2 was talking before 2yrs old so has a dx of AS.

What it doesn't take into account is what happens later. Ds1 had pretty much caught up with his language by the age of 5, was ahead by 6yrs and the people who work with him often comment on how great his language skills are. In contrast to this, ds2 still needs SALT as his language skills are so disordered. His spoken language is years ahead of where it should be but his understanding is a fair way behind.

IME the written reports usually take a few weeks to arrive. After an assessment we would be given the draft copies of reports but the full report would take anything up to about 6 weeks to arrive. For other Paed appointments it seems to take abot 2 weeks.

I think you have mentioned something like this before Amber - about being wary of what the label 'mild' really means. Because most people with Aspergers have an average of above average IQ I guess they learn how to mask their difficulties and are therefore seen to be coping. It doesn't necessarily mean that their autism is mild.

I assume though that you could also have a person with average/above average IQ in combination with mild autism. I would imagine they'd be virtually indistinguishable from someone considered NT.

I agree bear73 - I feel a need to have my own son's diagnosis pinpointed. I suppose I feel it will help me get a handle on it and perhaps what to expect in the future. Might you be able to ask for another meeting with the doctor so you can ask your questions? (although I did this with mine and it didn't really give me the answers I was looking for as he went all technical on my ass and I couldn't keep up ).

Well I actually sent the letter today. I know he is swamped with referrals so I thought it best to just send it addressed to his secretary. I just asked if and when I would receive a report/diagnosis and also if the diagnosis of AS v HFA could be made clearer as I was still a little confused.

Hopefully I will hear something back. I don't expect a report right away but I wasn't sure if I should even expect one at all. I honestly think the Paed was reluctant to make a firm diagnosis, he agreed she fitted criteria but when I said Aspergers he said "well you can give it a label" or something like that. Funnily enough my friend made a comment today that the Paed "doesn't believe in Aspergers". Now thats a funny thing to say, and I'd just sent off my letter, so no idea what she was on about. Will have to see what comes back.

Thanks for all your comments. Really interesting article about the speech thing.

bear
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Fascinating discussion. My DS1 has only basic speech so would not fit the more obvious profile of Aspergers but he is still only four so who knows what the future holds. We're very grateful for what we have so labels don't matter as much as they did at the time of dx. My brother has an average IQ as far as we can tell but in some respects, his autism is quite severe in that he neither asks questions nor holds conversations. On the rare occasions he speaks, his speech is stilted and unusual - without intonation or inflection of any kind. He does not participate in any social occasions and has no concept that anyone would mind. But he has got a maths degree ! (though it was a bit of a struggle)

Bear, glad you are on your way to getting answers. That must be a relief!

Can I ask a very vaguely related question? Does anyone know if the CHAT test for spotting potential ASD in toddlers covers Asperger's as well as other types of ASD? Just wondering if the more typical speech development in children with AS makes a difference in picking it up at this stage or if it's the non verbal clues that signpost ASD..