This Theory of Mind stuff seems a bit odd to me. Mrs Turnip? Others? Thoughts?

[linglette]

My SALT is specialist and has a good basic understanding of DS2's needs which is what matters, but we have very different views on what he "is" and I do find her views limiting. I'm starting to think it's the fault of her training, not her per se.

She has frequently mentioned theory of mind problems to me in contexts where it does not fit at all with my experience of DS2. It seems to be an area where she is saying "he ticks my god-given boxes for ASD, therefore he must have a compromised theory of mind". These are some of the moments where I feel glad I have not allowed her/the paed. to diagnose my child with anything.

She very kindly sent me a copy of a training presentation that she recently attended (in order to assist me in writing social stories). The presentation takes it for granted that autism is essentially a problem of theory of mind. So now I see where she is getting her ideas from. These are presented to her as facts that she accepts and then tries to get me to accept. If I do not accept them, she thinks it's beause I'm "not ready".

I mentioned this casually to DH who is a philosopher of science (so working alongside professional philosophers of mind on a daily basis, attending their seminars, etc) and he said "oh crikey are they still into that idea of your brain having a special little module that deals with other people's thoughts?" as if it was all terribly old-fashioned. And Hanen describes theory of mind as something you acquire over time......something everyone has to learn, but some of us find it harder to learn than others.

I dunno - to me, everything about DS2 can be accounted for as sensory/processing issues leading to a non-standard learning style.
And if a child had major problems processing non-verbal signals, well how would they develop a theory of mind?

I suppose it doesn't matter. I've refused dx so I've drawn my line in the sand. But it bothers me that the NHS is training my SALT in such an oversimplified way, and presenting theories as facts. There doesn't seem to be any acknowledgment of how little is known or how controversial it all is. I'm sure it must drive some parents away or make them feel more distant from their child.

I'd almost rather they didn't attempt any theorising than select one and insist all kids with ASD have the same problem. I thought we were supposed to understand by now that kids with ASD are more different than alike?

"There are other kids who actually have pretty good resources available to them (by which I mean they can produce speech) but seem unable to use those resources. "

So these kids sort of have the icing but no cake?

Well I guess it reflects different underlying difficulties. They have developed certain resources but can't access them when needed, or maybe don't recognise when to use them (remember I'm working with the severe group). Other - like ds1 - are able to use what they have - and use it well and appropriately - they just don't have that many developed skills. If you're lacking the basic tools then you will of course have a communication disorder - if you magiced up those tools you may not.

It's one big problem I have with the autism diagnosis. Someone says 'it's autism' as if it's an explanation. It's not - it's essential to then assess what exactly is going on - what's driving the communication problem in every single case. Because it's going to be different and individual.

For example I had no idea that ds1 remembered where he lived when he was 2. He had no way of telling me. Once he found google maps street scene that changed and he now frequently uses google maps and pointing and vocalising and eye contact to share all sorts of memories with me from his time there. The problem wasn't anything to do with not understanding how to interact or not understanding how to share interests -he just couldn't because he didn't have the basic toolbox.

"Someone says 'it's autism' as if it's an explanation. It's not "

that's exactly what DH said last year....

Oh it drives me mad lingle. It would make such a difference at so many levels if people would recognise that autism is not one thing.

I've heard somewhere (or maybe it was on here ) that some people prefer to refer to their condition as 'an autism' rather than just plain 'autism'. In the hope that it stops this rampant over-generalisation in its tracks, I guess. Really like the idea but can't see it catching on.

I've noticed in the NAS magazine, they often talk about 'some' autistic children having additional language and learning difficulties (or some form of words like that) as if they are trying to re define autism (not meaning Aspergers) as not normally implying language/learning difficulties. I'm coming round to the conclusion that in some ways, autism is not really anything (heresy?) and that it's far more important just to assess language/learning level. I really don't find autistic that useful a way to describe DS1.

Agree cyber

when ds1 was diagnosed he fitted the autism 'concept' pretty well - but that concept has changed over the last 8 years and when I look at what is now defined as autism it is nothing like him.

So when people start applying their autism theories it's of bugger all use to ds1.

It was very refreshing to see the neurologist as we started to talk about what is wrong with him with no mention of autism at all. It made me realise that the diagnosis has been block for years.

The changing meaning of autism makes it hard to even place DS1 on the 'spectrum'. He does not have that much in common with 'severe' autism but is not near Aspergers either but if you are not even 'supposed' to have problems with language or learning, where does it leave him? I did once think he could be towards HFA as he has been verbal since 3, can identify and comment on a great deal, and can answer simple questions but I know feel he is more likely to be seen as 'low' because of the big gap with any typical or NAS autistic child. Oh well, who cares.

"I'm coming round to the conclusion that in some ways, autism is not really anything (heresy?) and that it's far more important just to assess language/learning level. I really don't find autistic that useful a way to describe DS1. "

I totally agree cyber. I feel ok saying it when you say it first.

For me, it's categorising the experiences of the observer (and not even the best placed observer at that), rather than the abilities of the child.

Mrs Turnip - I am even beginning to wonder about Greenspan's "split" between "remote/unaffectionate/unengaged" children = autism and "engaged" = not autism. If you cannot process some signals to do with body language/touch, you're not going to have that twinkle in your eye as you anticipate being picked up, are you?

Yes lingle - although I have another ' problem' in that some of the severely autistic children in my study group are very engaged and affectionate. They have trouble maintaining circles of communication but they're far from remote.

I see. none of these splits work do they?

I hope that diet does prove to be a key that unlocks another door trouble.....

Actually I've realised I've been misreprenting Greenspan. Although he uses the "non-engaged" criteria to define ASd, he also stresses that the level of engagement is not a static thing - a child qualifies for his ASD dx if they were non-engaged with primary carers at some point (eg age 18 months to 2.6). But once engagement is achieved, that engagement and that relationship with the primary carers is just as valid as if it had always been there.
He's still classifying by observer's experience but at least it's the key observers - ie primary carers.

Maybe judging 'autism' by the level of engagement is just another red herring though - Someone once told me about an Aspergers boy she worked with who was said to be 'completely unengaged' - However given that he had normal language, it's hard to see how he would have developed it if he had really not been paying any attention to anyone - whereas an autistic child who does not acquire language does not engaged with language because it has no (or limited) function for him/her but physical engagement has a function - to get needs met etc.

Mrs T I would be very keen to read your thesis too! I find ToM really interesting and have learned so much from the recent threads on here - like others here, I have often felt uncomfortable that it is just taken for granted that kids with AS will have it rather than looking at them and how they present as individuals. Please put me on your mailing list!

DS3 is MrsT's sewverly asd but enegaed type; soemtimes people struggle toa ccept he ahs ASD because they see asd as one type but it's not

Yes cyber, I think you may be right, it may be a red herring, because the whole term "autism" isn't an explanation of anything(you peel the onion layers away and there's nothing in the middle).

Greenspan has his own political agenda of course; vigorously opposing the extension of the dx criteria in the USA.

Theory of Mind is important to some people, my Dd1 and Dd3 have impaired Theory of mind and the impact of this is huge, especially for Dd3. She has no idea that other people do not know what is going on in her head. She has no idea that other people have different thoughts to her. The impact of these difficulties on family and day to day life is massive. As far as people empathising goes, thats a laff you try to get siblings to empathise with each other at the best of times without 2 of them having impaired theory of mind.

The only trouble with not giving a simplistic diagnostic label to the nonNT dc is the tendency for the 'lazy, naughty and/or stupid' label to stick instead. This really is a fab thread, I'll still fight to get ds a diagnosis but it's worth remembering how little it really means.

Thanks for putting this thread to the top again!

"About the only person still doing the single cause of autism=ToM deficit is SBC." [12th Oct 20:09] Turnip

About to go back to 'follow-up' bit of NAS Early Bird course. Unfortunately, it seems that according to the course leaders, the only person who has ever done any research on autism is also SBC.

Prize quote from the course. "An autistic child just wouldn't understand what a squirrel was thinking".

(To be fair they were all very nice and well meaning, and I don't think the squirrel theory was actually part of the official literature...)

Ha ha@ the squirrel.

I think the NAS' close relationship with sbc is part of the reason they no longer do a particularly good job of representing the severe end of the spectrum. Although weirdly they do provide some resi services that are suitable. I think that arm must be very separate from the political and education arm.

Fascinating, thank you, (no useful things to add, as I am still getting head round dx etc, but after starlight's "hi to lurkers thread" thought I would admit to lurking here and learning loads,