Mumsnet Talk

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?

I think this is a real problem in every discipline relating to ASD. Some professionals are better trained than others, some have more experience and are more able to see nuance, some stick to what they were taught ten years ago and never update or widen their schools.

However, as a lawyer, I know that this is also the case in all professions!

I think it can be very difficult dealing with professionals who seek to give definitive answers when they perhaps aren't even asking the right questions. Especially if a programme of action is based upon it.

I've just seen a SALT who thinks DS's language is fine (which it is) but didn't even notice his obvious baby voice (the community paed who saw him did) and although she noticed a whole host of social communciation problems, said that she doesn't need to be involved any further - I could just show him pictures of people smiling in books.

But this is not specific to SALT. I remember that when I was pregnant with DS and he had interuterine growth problems, that the level of information and knowledge amongst the professionals I was dealing with was scandalously poor and I found out more from the internet than from my consultant (who was about ten years out of date).

Heh ho

widen their schools - or skills even!

They are all different...but i've always thought of it like a graphic equaliser...some areas are turned up high and others low. Those ones which are high maybe mask out the lower ones sometimes?. I do think that with masses of experience and much repetition of the same scenario, ds has learnt to predict what certain people may do (dd mostly because he knows everything about her).
They have to start somewhere though don't they? They have to be able to say 'we find that children on the spectrum can have problems in these areas'.
There are certain areas that ds has never fitted either and yet the paed seemed eager to add them to his assessment report.
Actually i've always felt from courses i've been on that there was a definite acknowledgement that they were still trying to work this one out...that we as parents were the real experts and that they were eager to learn.

troutpout - that is very promising! I admit the better doctors (like our community paed) have shown that attitude too. Not all do though

They have to be able to say 'we find that children on the spectrum can have problems in these areas'.

Yes that's fair.

My SALT goes much further than that though which is a pity.

It would bug me a whole lot more if I'd consented to dx because then I would really want it to be right. As it is, it's just comments......

I agree with your dh There's a good paper written by Stuart Shaker (part of the ICDL lot) in Theory and Psychology - your dh probably know the paper- which I think gets it the right way round. He says that ToM develops from interactions (actually Tony Wootton at York says the same) so in interacting with people you learn about other minds. Of course if your interactional skills are compromised then you will have some theory of mind difficulties. If you want the paper let me know I can send a copy (or email Stuart Shaker, he was happy to send me one).

Most of the work on theory of mind has been done on hugely complicated false belief tasks which require v. good language to get 'correct' (and no overthinking). And can only be tested in the v. high functioning group. And anyway even if you give the most complicated test a certain % will pass it.

I am writing a chapter at the moment about severely autistic children teasing. Now in my research work I have observed children doing things like being asked a question, then getting it deliberately wrong - but making it clear this is deliberate. Now these iare children who doesn't have the language to even be given the Sally Anne test let alone answer it but there's quite a lot of mind reading that has to go into that sort of thing to pull it off. And these are severely autistic kids doing this sort of thing without much, in some cases any, spoken language. And very skillfully too.

About the only person still doing the single cause of autism=ToM deficit is SBC.

It is hard to train soemone using diagnostic tools for a condition that cannot be seen or tested for.
Sometimes I think professionals can be guilty of loosing sight of the inividual & focusing on the text book & that can never be helpful.

More often it becomes a problem when children don't show enough of a problem in one area the triad to warrant full dx even when struggling in the other areas.
But then is this truly Autism?
So many conditions overlap, if it wasn't for the strict criterea various agancies use for allocating support & therapy, would any of us be worried about a name for our childrens disability.
There was a time when rightly or wrongly children such as my ds2 would have been labelled simple or backwards.
As for theory of mind, I don't fully understand it myself.
My ds2 definatly believes everyone else sees the world as he does. I don't think this makes us feel more distant but it does make life interesting.

And linglette - I share your frustration. Because there is almost no research work on children with severe autism I have seen things written like 'well because high functioning children have problems with false belief tasks then it means that those low functioning ones- who lets face it don't do very much- must have no theory of mind at all'. Eh? Such a sweeping statement without anyone even looking.

And then as a parent you remark 'oh he's been teasing me' and Miss Theory with no Hands On Experience at all marks 'in denial' next to your name.

If you actually look at severely autistic children interacting with familiar partners in familiar settings you find them doing all sorts of things they 'shouldn't'. I showed a very big autism name a short thirty second clip of a non-verbal child seeking permission before eating a cake and she was surprised at the competence and at how unlike autism it looked. Except did look just like severe autism. It's just no-one ever does look. They 'know' that severely autistic children don't do this stuff.

In the course of writing this post my son has dragged me away three time to show me some lampposts he particularly likes on some of his favourite YouTube videos. I have to make appreciative noises before I'm allowed to come back to my laptop. Except of course I must be imagining it because severely autistic children are incapable of sharing interests aren't they?

Have you read Lucy's Story (by Lucy Blackman) or Autism and the Myth of Being alone (especially Lucy's chapter) - Lingle- I think you would find it interesting.

Actually lingle when I have finished my PhD I will email you a copy because it is going to end up being in a big part about competence and exactly the sorts of issues you identify. (And you're probably the only person who would ever be interested in reading it )

It'sinteresting- I've sat trhrough several lecturers with uite highly regarded ASD diagnosticains (sp) this monthn (one on the NICE committee) and the only person who raised ToM was a SBC obsessed fellow student (who also thinks the AQ should replace ADI R etc).

The emphasis from the end at which I am getting it is firmly ojn the interaction of diagnostic criteria being rpesnet, rather than any pone style of being IYSWIM.

I think Lingle also would ahve liked it due to the emphasis on parental belief.

Saintly, we were first told that ds2 copuldn't be autistic because he ahd a good sense of humour.

Yes I was told that anon.

And then when he was diagnosed I was told I was imagining it and in denial.

It just reflects that most people who diagnose have bugger all hands on experience or experience in its day to day reality.

I am still reeling from the expert who stated at a conference that he knew everything about autism as he had diagnosed over 2000 children. The person next to me choked as well.

I know bugger all about autism, but i know my son.
Because ds2 gets jokes & laughed when the psych put a pair of trousers on her head, she said oh well he's obviously bright he can't be autistic

Anyone that claims to know everything about anything knows sod all.... IYKWIM.

We were told that about ds3 as well.

Luckily our team are pretty good at taking their time to get to the real answers. Eye contact is the other one they trot out IME.

ds2 has great eye contact with me & familar people but zero eye contact with strangers.

I have heard it quoted by ill informed gp's as a reason not to refer - oh but he makes good eye contact. So what!

y,y we have the eye contact one as well.

My current teasing chapter is all about the use of eye contact by children with severe autism. Two children I know who are completely non-verbal use eye contact as one of their main ways of communication.

good paper to read for anyone interested :autistic children's co-ordination of gaze and talk: re-examining the 'asocial' autist.By Dickerson et al. It's in a book so not that easy to get hold of, but worth it.

Slight thread crash here, but I'm really interested in books that people can recommend on ASD (DS2 has supposedly AS, but I suspect more like HFA/PDD-NOS).

Nothing too academic. I know you were doing a book club Lingle weren't you. Was it with Greenspan? I've read Tony Attwood. But not much more.

DS2 had his birthday party on Saturday afternoon - bouncy castle in our garden. In the morning two of my friends with autistic children brought their kids for a bounce, so that the castle would be quiet and not full of screechy NT children .

It was so interesting to observe them. DS2 -generally seen as most 'severe' and certainly the one with the least language - was the one who was playing/interacting most with the other children, including playing a rudimentary game of hide and seek round the side of the castle which involved extended eye contact, response, laughing when he 'found' his friend etc. He really seemed to be demonstrating ToM in that he was initiating the game and responding to the other child's actions. He was also approaching the adults and requesting/initiating games. The other two children have far more language and their learning abilities outstrip DS2's by a mile - but socially he's way ahead. I find it fascinating but I wish I understood the reasons!
Put me on the mailing list for your PhD too MrsT

sphil that sounds like a lovely moment.

This is a good thread, some people here have articulated some of my reluctance towards my ds going for a dx - the professionals involved with my ds have already labelled him, just not formally.

I find it difficult to trust them, even if they have spent years doing what they do - I just worry about the dx being limiting to my ds's potential - but if they have already labelled him, his potential is hindered anyway, by what they think he can and cannot achieve.

Recently my ds's ms teacher said that ds would start to fall behind his peers in the next few months [academically
] - this annoyed me because it feels like a self fulfilling prophecy iykwim.

I feel like I can't really talk about it to anyone either - the whole denial thing looms on one side, and then I feel guilty too, I am lucky my ds is bright, healthy and happy. I just get myself tied up in knots about it all, never mind ToM.

I do regret having a dx now. I am in the same boat I think having been on the receiving end of professionals ticking boxes about my DS and making a judgement based on those rather than on him.

DS has dx of AS but the consultant clincial psych said his social communication difficulties weren't severe enough to be called AS and yet 3 professionals at his dx meeting, who had never met him slapped a dx on him all the same - just because of the boxes ticked.

And yet I really really don't feel he has AS - I've read the books, trawled the net and it just isn't him. I think he has dyspraxia, acknowledging the overlap in symptoms with AS and the fact that he does clearly have social comms difficulties but I think they have looked at their little check list and came down on the wrong portion of the venn diagram of diagnosis. Clearly they aren't deciding with reference to DS as they hadn't met him.

But as some of you have said, you can't query these things because you look like you are in denial and burying your head in the sand. I was the one who thought he was on the spectrum in the first place - if I now don't believe that is right it isn't because I am denying it, it is because I know more now and really don't believe it is correct.

Brokenspacebar - I totally understand how the dx is a self-fulfilling prophesy. Having a label means that the school have already decided what my DS's limitations are and what he can and can't do without ever giving him the chance. Plus, he gets away with being lazy or not trying sometimes because they seem to think he couldn't do things anyway and that it is not always true.

I am not surprised that ToM is now seen as an evolving skill, acquired over time. I would have thought that intuitively anyway. It quite obviously can be taught but as the OP says, some find it harder than others.

Niecie that sounds quite similar to our situation. I really don't think DS has AS - I've read quite a bit too and met quite a few AS kids and it doesn't seem right to me.

But like you, don't want to be accused of 'in denial'. I think our Paed was sort of trying to be helpful and thinking that he was more likely to get help at school with a 'recognisable label' and I suppose I would rather have something than nothing and no help. But it is misleading I think, as doesn't actually acknowledge where his real difficulties lie.

Does he have ToM? - hmm. in a very small way. Does he have commuication difficulties - yes, in spades. I'm sure they're linked. If we work on the communication, I bet the ToM stuff will improve.

"The other two children have far more language and their learning abilities outstrip DS2's by a mile - but socially he's way ahead. I find it fascinating but I wish I understood the reasons! "

Sphil - I think it's because in many cases of more severe autism (eg your ds, my ds and many others I know) the problem is with being able to control movements, and being able to act as you intend, rather than as your body propels you. This is something the severely autistic individuals who have learned to type all seem very clear about. At the severe end of the spectrum autism is primarily about impulse control and movement difficulties. I also think there are often problems with an understanding of time - but this is something that is poorly researched.

When I showed the big name the video she did remark that the child in the video looked more socially able than the high functioning kids she works with. She like me though thinks there are various subgroups within autism and that it isn't one thing with one single cause.

You're already on the list sphil

The thing about ToM as well is that children seem to start acquiring it about the age that a lot of our children get their dx (3/4/5 yrs old).

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.

Box ticked, dx made,job done.

The fact that you may then query the dx since the criteria don't hold any more (or maybe never really did) is seen as the denial thing again.