Asperger's is .... (with apologies to MrsF)

[binkie]

MrsForgetful, your message touched a chord and I really hope you don't mind me copying you.

For anyone who has an Asperger's child, or knows about the condition: can it be so mild that the symptoms are clumsy speech, naivety, and inability to follow group social cues (though OK one-on-one or when directed)?

So: no insistence on routines/rituals, no single-track obsessions (and instead lots of different interests which change), no sensory problems, loads of interest in stories and making up own (and very happy when other children join in)?

Ds is nearly 5.

Binkie, I really want to post a considered response to this and I just don't have time at the moment to do it justice, as have a lot on at work.

Would it even be helpful to meet up and have a chat, as you work so near me? I could do Wednesday lunchtime, or a very quick meet-up on Friday?

Maryz, he's managing happily at home where we're used to him, but there are starting to be school problems, sadly - although he's lovely on one-on-one playdates, group behaviour (classroom and playtime) is a worry.

Dinosaur, that is such a very kind offer. What I am doing is trying to prepare myself (whether or not this is the right way!) for what may emerge from ds's ed psych appointment in 3 weeks' time. Perhaps I could see that through and then come back to you?

Yes of course. Just so you know, my DS1 was originally diagnosed as high-functioning autistic, but the paediatrician who diagnosed him thinks that it may be appropriate to change the diagnosis to Asperger's Syndrome.

You might find Tony Attwood's website helpful - it's \link{http://www.briefjacquig.co.uk/\here.

oops - wrong link

here

Binkie we are in the same boat....so i'm glad you started this thread....you know EXACTLY where i'm at cos you're there too!!!

maryz - I've read that lots of professionals think the two terms are absolutely synonymous! But our paediatrician has a bee in her bonnet about two things. Firstly, she thinks that DS1 was too "language delayed" to be Asperger's rather than autism - but he was speaking in single words by two and sentences by three, and I have read that that is the guideline for whether a language delay is "clinically significant". Also she seems convinced that a child needs to be clumsy/dyspraxic to have a diagnosis of AS, and DS is not, although he is not and never has been physically confident - e.g. always screamed blue murder if I tried to put him in a swing, for example.

At the moment, like you, I am happy (well, sort of happy) to describe him as high-functioning autistic if I need to "classify" him. However I recently reread the DSM IV criteria for autism and I thought that DS1's communication skills have really come on so much now that he can't truly be regarded as having "serious difficulties" in this area.

Anyway, this has turned into a bit of an essay and I meant to watch the programme about who killed PC Blakelock, so must go.

Hi Dinosaur
I have a dd who is 4 and half and has a language disorder, which they suspect is a semantic pragmatic langauge disorder. I find it all so confusing as we have been told by all of the health professionals that our dd is not on the as, but the one thing that makes me think she is, is that she echoes language (delayed, not immediate) sometimes - which the health prof. know! Also, there is a huge debate as to whether SPD is As, but the medical profession (in general) are split as to whether it is a separate disorder or part of the "autistic continuum?" Confused - yes, very!
I also read somewhere that there is a grey area where language disorder overlaps with aspergers, something about round pegs and square holes!!!!
I mentioned aspergers to the paed. and he said that as dd didn't have any obsessions, routines etc and as her speech was severely delayed and not very articulate this was highly unlikely. Sometimes I think that things may become clearer as dd becomes older???? Sorry to waffle on but it is something I feel passionate and confused about!!!!!!!!

At ds1's preliminary assesment we were told that he almost certainly had AS. At the case conference the phrase used was "at the higher end of the autistic spectrum". The Paed knew about ds1's language delays when she diagnosed AS so I think she feels that AS and HFA are the same.

KPB - Ds1 also has a tendency to echo what people are saying. When he echoes he can speak in that person's voice, including their accent and intonation. When using his own voice he can only manage short sentences.

I sometimes wonder if he has inherited my 'delayed' hearing. Often when people are talking to me their words don't seem to register. It seems to take my brain a little while to filter the words through. After that I can almost hear their voice repeating the words.

I've always thought that HFA and AS are different. I don't know how they are classified. I believe that people like Temple Grandin (again!) and Roz Blackburn, Wendy Lawson consider themselves HFA NOT AS. There are two boys I have known since they were very young who have AS and I think their parents and most of us who know them could have picked out as being AS from the start although they both had ASD dxs. One has just been re-dxd as AS. I'm afraid I'm a bit skeptical about professionals giving semantic/pragmatic disorder or communication disorder dxs, I have know many times that this has emerged into an ASD diagnosis that has just been delayed (including my own son who is as ASD as you can get!). I don't want to depress you but I would keep digging at them. I think some professionals don't always pick up a lot of the ASD behaviours, hence MrsF's and this thread. Not all ASD behavious manifest themselves in the typical way and many are subtle rather than extremely noticeable. When I think of my AS sister there's things like her handwriting is attrocious and she can't spell although she's very clever. She often would copy other people, this was not empathy or theory of mind but because she couldn't make a decision herself and copying was easier.

This is such an interesting subject. Davros, I want to bring my DS1 to meet you now just to see what your impression of him is...

Ho ho Dino, sometimes I know WE can dx better than some of those soppy professionals. Why are they always trying to make things LESS than they might be, so what if they make a dx that is MORE than a child has, I can't see the harm and I've never heard of a child misdiagnosed as ASD or AS, only the other way round, i.e. NOT diagnosed as ASD or AS! I heard a quote many years ago that "its hard on a parent to get an ASD/AS (fill in the gap) diagnsosis for a child but its much harder NOT to"

Some children with language difficulties do have autistic traits/tendencies but not enough to warrant an ASD diagnosis. According to the health professionals they have to have a triad of impairments. My dd does not have firm dx of spd but does have difficulties in the area of semantic/pragmatics - which is common in language disordered children. We have had so many test done, seen so many people I am sure that one of them would have said that she has asd. Infact it has been quite the opposite they have all said No, when asked. Even the child pysch.! Where we are at today with her getting the right education provision, dla etc. diagnosis isn't as important so we are going to wait another year or so when things are clearer - if that makes sense!

It sounds to me as if we all need each other, and the professionals too. I am trying to keep away from this subject until the ed psych appt but the variety of signs and counter-signs are producing obsessive tendencies in me (ie as opposed to ds)...

I'm just going to put this down in case it is ever of use to anyone else, & then not post again till after the appt.

So: ds really doesn't like sustained eye contact in conversation (unless you're telling him a story); he acts deaf and speaks with a funny little high-pitched unfluent delivery & tangled syntax; will giggle foolishly at someone else crying; doesn't "get" why he should sit still at assembly if the song they're singing is one he's decided he doesn't like; failed Sally-Anne.

But: he loves role-play and is rather charmingly good at it; is keen on turn-taking games with little friends, eg hide & seek; takes obvious pleasure in his sister being happy; didn't give the right answer to Sally-Anne but was all excited and amused by the naughtiness of Anne.

Agree with Davros- I think AS and ASD are different. The AS kids I know are completely different from the ASD kids I know. family histories seem different, Medical type histories seem different. I feel like I know lots about ASD but almost nothing about AS.

A lot of adults autistics say the same. Is it Wendy Lawson (someone like her anyway- it may be Temple Grandin) who says she can't understand why they put AS and ASD together.

Have they scrapped PDD-NOS as a dx now?

Hi Binkie
What's Sally-Anne?
Thanks KPB

KPB, Sally-Anne is a test to see if a child has developed "theory of mind" - ie understands that other people have separate thoughts and feelings, which is thought to be a reliable marker for autism in children from about 5 upwards. Jimjams knows all about it - if you do a search on her recent posts you will find links. The result I got on ds may well have been confused by his language difficulties - that is, he failed, but I am not sure he really understood the key question - he sort of passed once I asked him the question in words I knew he could follow, but that meant he wasn't passing the test as meant. So since your dd has language difficulties, it may not really tell you anything (and also she might be a bit too little yet).

Hi Binkie
As I am new on here I don't really know too much about everyone. Does your ds have any dx? My dd has a language disorder and that is all they are prepared to say! Not sure if that's a good thing or not. KPB

I think AS and ASD are different. It is usually the language skills that are the marker - AS kids usually have good language skills, probably why the dx is made later. I do believe that you can have language problems such as SPLD without being autistic. My ds has both ie his diagnosis was AS along with a SPLD. In his case the two overlap. Think of it not so much as a continuum but as a Venn diagram with AS, ASD and SPLD overlapping. I got this from an interesting paper here - Autism, Asperger's syndrome and semantic-pragmatic disorder: Where are the boundaries?

KPB- I'd be interested to know about your dd's language disorder - I will start a new thread. Welcome by the way

KPB, welcome to you from me too. I'm pretty recent myself, but you get to know people and feel at home so fast, it's lovely. To your question, no my ds hasn't any formal dx for now apart from the speech therapist calling his difficulties "subtle verbal dyspraxia". I'm not sure it's only verbal, & subtle means "now you see the tip of a possible iceberg, now you don't" so my worries about him go from one extreme to the other.

Although ds has I think the opposite problem to what I think SPLD is - ie he has very high receptive scores & very low expressive (which actually makes sense if it is verbal dyspraxia) - I am very interested in SPLD too, so will follow on to Eulalia's new thread.

Interesting paper Eulalia.

I find it interesting to talk to adults. I think a lot tend to see HFA and AS as seperate. For example I know a married couple- one AS one HFA- and they insist there are fundamental differences between them. They were probably more different as children than adults though.

I my (limited) experience, the AS kids I know are far more rigid than the autistic kids. Much more rule bound. That may be because they are more aware. Meanwhile even the highly verbal autistic children seem to struggle with language more than the AS children (who struggle with the social rules).

The family histories also seem to be different (although I am aware that Davros is an exception to this) but in general most of the AS kids/adults I have met have a long hisory of "eccentricity" within the family. An uncle who collected picies of telegraph poles, a father who was very distant and lacked empathy and was probably AS. Meanwhile most of the autistic kids I have met don't seem to have that but do have a family history of autoimmunity, or the child themseleves has shown signs of an immune problem. Of course these are mass generalisations and there will be overlap but it seems to work as a general rule.

Of course there are many ways to autism/AS so there is bound to be overlap. Especially as defecits occur to different degrees in different areas. I rather like the idea of an autisic landscape- and idea pinched from Larry Arnold for anyone who knows him- he sees it as a 3D landscape with peaks and troughs and many contours.

Recently one of the lists I'm on had a discussion as to where do you draw the line. Dyspraxia sometimes gets included now- and to really push it dyslexia. Should they be included? My initial response is no.

I agree that someone can have a language and/or communication disorder without ASD but have never heard of ASD or AS that doesn't come with language and/or communication disorder IYSWIM.
Something I have noticied about the two AS kids I know and my sister is that they have VERY vivid imaginations, to the level of being inappropriate. One boy has his "own planet" with a name and its own language, he is 6 years old!
It is also very, very common in ASD to have good receptive language and poor expressive, my son is exactly like that.
KPB if you've tried to get a diagnosis and can't that must be very frustrating. I know diagnosis, i.e. a label, doesn't make your child or their needs any different but it is a way to start making sense of their "differentness", its not just the door to services although it is that too of course