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?

Niecie there were people yesterdaya rguing for residualasd to make a re-emergence:I know nothing about it (hadn't even heard of it until yesterday but there do seem people on here who would benefitr from a term somewhere between ASD - straight and denial

glad you agree Mrs T. Your PhD is much needed and I will definitely read it please.

Funnily enough I never discuss these things in detail with DH as much as I do with you lot.

I did once attempt to explain the "triad" to him but I'm afraid he burst out laughing. Something to do with putting things in threes being a classic strategy to convince people of your theory.

Niecie, of course you can query it and perhaps you should if it means that incorrect assumptions are being made about his strengths and weaknesses.

"Even if they are only a year off the 'normal' age for acquiring the skill of being able to put themselves in somebody else's shoes, the fact that they are seen so early means that this isn't taken into account and therefore they 'fail' the ToM test."

I find that the fact that DS1 meets milestones late is often seen as proof in itself that he is too disabled to learn anything. His imaginative play is doing well and his speech is improving - but I get the feeling that professionals think 'Oh dear 3 years late, how awful to be so handicapped. I knew I was right about that one'

oh yes a three part list linglette. I think your dh is on the same wavelength. My supervisor loves three part lists so it's a bit of a joke between us when we spot one.

DS3 didn't lose skills peachy, he just looked a bit dodgy for a while- speech was coming in very strangely.

DS1 lost skills though. Particularly speech and quite weirdly speech sounds. So for example he used to do a great sssssssss if he saw a snake and a lovely qua qua qua when playing with ducks in the bath. He can't make those sounds now at all.

yes cyber that sounds very familiar.

Whereas Greenspan has a marvellous passage where he says "what does it matter when you achieve a milestone if the foundations are truly solid?".

Which is why I like him

Yep cyber, whereas ds3 meets many milestonnes on time, hasabsolutely zero imaginative play and lassive barriers to learning (very frequent absences being a big one), yet because he learnssometimes it isassumed hecan learn everything and develop equally in all areas, not so, esp. as hyperactivity becoming an issue.He can learn for maybe 5 minutes but after that no (he's year 2).

The absences are seen by some as daydreaming but I ahve them also and they are categorically not, they are completely different and affected my education also. Well i would wouldn't it, if you aren't 'in the room' for 3-5 minutes at a time frequently.

ds2 appears mild BUT is severly effected, his anxiety levels & needs for routine are so all controlling that it impacts every part of all of our lives.
Within his normal routine & within his own expectations ds2 can be sociable - because he knows what is expected, is this showing great ToM or is it behaviour learnt by repetition (sp) which is how he learns everything.
So he knows when in the school playground everyone chases each other about, so he does the same, sort of!
But actually he would not care if he never saw any of these people again, if I took him to the park with the same group of people, he wouldn't behave the same he would pace & cry & ask to go home. In fact i wouldn't get him out of the house in the first place!

Sorry just re read my last post, soundsliek alot of drivvle... just had a crap day.

Honestly anon,it didn't at all.

Sounds like he has developed coping skills within the familar world- not unusual with asd kids and a great thingg as an indicator of a potential to develop them more widely. Once you can recognise that for what it is (scenario specific) I think you can celebrate it. That's apprently partly what repetitive questioning etc is an attemp to do (just quopting a Psych I know now, no great research or anything LOL) - establish firm boundaries into which to develop the ability to predict and learn coping mechanisms.

Thanks Peachy - need to give myself a kick up the arse!
I suppose once i can get him to transfer those learnt skills & behaviours I've got it licked .

Really peachy, i always assumed his repetitive questioning was just seeking reassurance & a sign of his anxiety. I didn't realise it had a function beyond that.
He says very lttle, no conversation, but does question.

It's just one theory mind! But I like the reassuring theories LOL and fwiw this Psych does specialise in complicated comorbidity cases so failry up on it all

ds2's ASD is a result of his brain damage has mild CP, ASD & LD. Has been described as a complex case.
Right now i am just finding it particularly difficult.

Sorry linglette for the hijack!

This thread is brilliant. I've not got to the end yet but in my excitement just wanted to post something.

Since being abandoned by the LA we began a home programme of teaching ds things until he got his dx and therefore support.

We kept a record and one of the columns for evidence of understanding was 'understands a joke about it'.

So, when we were teaching him colours, we would point to 'red' one and say 'yellow'. DS would fall about laughing and say 'noooooo red', and then at another time that day point to something green and say 'purple' with a cheeky grin.

On another point, if I tell him off for touching our cds or something, he will drag me to another room, say to me 'sit down', and once I am there run back into the other room so he can play with the cds.

SO, - aren't these signs of ToM? Perhaps not advanced, perhaps not without problems, - but no-one can convince me that it is inexistent.

btw saintly I would be very interested in reading your PHD.

Sorry, - I'm so excited by this thread that I keep wanting to post as I read more.

I am in the lucky position of having professionals involved with ds who have such little knowledge of asd they don't know what he shouldn't be able to do. Never seen this as a positive before but I really think it is. Perhaps they can focus on him without being undermined by his dx.

brokenspacebar my ds has a dx because there is no way in a million years we could afford to get him the help that we are taking the LA to tribunal to get, and our case would be weaker without a dx. But I do plan to consider having it removed at a suitable time in the future.

I too have been told, by the education people, that ds will fall further and further behind because his peers are on a steep learning curve that he is not on atm. I agree with this only in that this is true should he not get the right support. What they are offering is negligable.

I have also been told that my expectations are too high and that my frustration at ds' progress is because I won't admit that the foundations need to be worked on before he can move to a higher level. The misunderstand. My frustration is that he isn't making fast enough progress on his foundation skills because their input is so little. I want to see foundation skills progress, not blimmin complex mathematics.

I suppose I am more able to accept a dx now, than I would have been when ds was 3, theory of mind is interesting, I wonder how it relates to my ds, poss HFA, language disordered. Empathetic from a young age(imo) - he would get really upset if others were crying, he would cry if dd was crying. He loves jokes, cheeky humour, slapstick, has recently started telling jokes.

None of these things preclude him from having autism imho, but I just worry that those who dx can be so blinkered, and limiting in their understanding and how that may affect my ds. I just want to protect my ds, and ensure he gets the support to reach his potential, whatever his issues are and the label that comes with these issues.

I am very tempted to try a theory of mind test on him - which adds nothing to this debate I suppose.

The whole diagnostic process is nebulous, subjective and vague (and looking increasingly pointless from where I stand). Still it keeps someone in a job I suppose and there certainly seems to be a plenty of work about in this field.

This is why it is so wrong when meeting children's needs hang on what dx they get.

Moving off topic a bit but getting professionals to admit there is uncertainty in any process they use daily is an uphill task.

Absolutely, i.e. my ds has autism, therefore he is a visual learner, therefore we will teach him PECs, - what was that love, - you say he can verbally request things? - well you don't KNOW that he can, oh you do?, - well you don't KNOW that he can do it when you are not there, he needs to master PECS anyway to initiate, - pardon, oh he does?, well he hasn't asked ME for anything so he obviously can't generalise and therefore needs PECS

and blimmin

ds1 also does what others are describing - show the wrong answer and grin teasing you.

When I first started reading up on asd the first thing I found was the triad of impairments. To me impaired means not functioning as well as others so someone who is hearing impaired can hear somethings but not as well as someone who is not. So surely someone with asd could have theory of mind but not the same as others.

Debs are you aware that in 2011 the NICE guidelines on asd dx will be published? So there are changes in the pipeline, just they take a long time.

I happen to know the pref of one person on the team is ADI R and DISCO but have no idea about the tohers LOL

Oh and thre's debate apaprently about whether sensory should be covered in DX, of course it bloody should!

"I am in the lucky position of having professionals involved with ds who have such little knowledge of asd they don't know what he shouldn't be able to do. Never seen this as a positive before but I really think it is. Perhaps they can focus on him without being undermined by his dx."

snort and smile . That's why teachers can sometimes be better than therapists.

Greenspan describes how, if a parent dares contradict the generalisations that are being made, they are "handed a leaflet" that explains why they are wrong. Reading that crystallised a lot of things for me.

Most doctors seem to think that our observations about our own kids are of the same value as a patient's theorising about whether they have cold, flu or a bacterial infection ie none.

sorry, wittering on.....

One thing that helped the paed. (generalist) "get" my challenge to her was when I said "if you were telling me you suspected he had diabetes, I would be entirely guided by your judgment, but this is different".

But what helped most was turning up with my box of visual tricks and showing her how they work. It was moondog's idea for me to demonstrate my greater understanding of DS2 rather than to assert it. Moondog is clever.