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?

I haven't had that from the Paeds here- they have amde comments about eye contact etc but have always ben happy to be referred to publications etc. What I am learning though is that whilst I felt very isolated with a non spcialist APed, there is a massive experienced and importantly interested (it seems the comorbity psych doesn't even get paid for her weekly session, she does it through interest- adults with LD is her paid work) team in there behind me. It it weren't for the complete absence of SSD support i;d be suggesting a great many people move over here LOL (just not to our school- plenty of decent ones outside the Church system)

My problem is perhaps the opposite in some ways. The paediatricians etc have been generally ok. Others seem to have a very fixed idea of what he should havew problems with - e.g. can he understand jokes, oh he can they say almost disappointed. There also seems to be a sense amongst teachers that if he is not bothering them, he must be ok and not need help. Perhaps their idea of ASD is catatonic children rocking in the corner or throwing tables around and not being able to read and write.

The fact that, at nearly 7, he sits and watches his 3 year old brother throw up in bed and doesn't think to tell anyone or that he hasn't a bloody clue what he's supposed to be doing whe n he first goes into class or that he sits chewing bark/twigs after break (or his feet) doesn't seem to raise alarm bells. Perhaps he could just stop that though cos it's not very nice to look at...... aaaaarrrrrggghhhhh bad week

Debs I can emptahise with that- the stereotype is so fixed and it bears little reference to relaity of ASD. On any spectrum,most kids won't be at any extreme- if they all were in one or the toehr I am sure it owuld be given different disorder names after all.

There doesn't seem to be much understanding of the idea of a continuum. Or that variable skills is often part of it,or that it is criteria absed- meeting teh criteria for DX in no way dicattes everything else on the list. Taht's why their are options for box ticking: that very fact presents an assumption that different children have different traits, no?

I wish ds1 would get jokes mind, some of the supposed humour he directs at us..... would make your eyes bleed!

"that very fact presents an assumption that different children have different traits, no?"

depends on what boxes we are talking about I guess.

If going through a big list of possible sensory/processing issues, ticking some and not others, then moving on to resulting behaviours and trying to link these back to the sensory/processing then yes absolutely I'd agree.

But not if ticking off the three "triad" boxes then making lots of assumptions based on that alone which is what I see happening here. My paed. spent an hour's appointment mentally ticking boxes and at the end of it I suspect she knew little more about Ds2 than when he came in.

Sounds like you have a great team there, btw, we are all going to be moving there!

sorry, meant that my paed. spent the hour on her "triad" boxes but didn't really get a picture of the strengths/weaknesses. So she was using the wrong boxes IYSWIM.

Demonstration always the way to go. I take video of ds1 now. Much more effective than me telling them (whilst they go 'yeah yeah mother in denial')

I've started taking pictures of ds1'sdevastation; it'seasy to write 'plays up a bit' or 'can be moody' but when the film is of a bathrroom totally trashed (monday) or a nine year old swinging a bat at the camera there may be a little more comprehension of the issues. I hope.

Shame I didn't get film of him putting water in dh's electricalequipment but maybe some things owuld scare them too much (he knew what he was doing)

I dunno, - round here all asd kids are the same OR different depending on whether it will have funding implications. They can be both the same AND different too, if it means they don't have to give you any resources.

We don't have the support issues that so many people have on here, and the Consultant Paed we have seen is old, and not desperate to put my ds in a box, he wants to see ds regularly but not in order to dx, just to see how he is coming along? Recommends we wait and see....

The psychiatrists are the ones who are wanting to dx our ds, I feel almost as if they want to get the numbers of dx's up, and are not actually interested in my ds in any way, cynical me?

I work with a young man who has a dual diagnosis of autism and fragile x and is on the 'severe' end of the spectrum and he has the most amazing sense of humour - his particular favourite joke is giving the wrong answers to questions e.g what did we see? and he answers 'cake' - this is the most hilarious thing for him and his laugh is so infectious!! It is a really lovely thing to watch - I managed to capture it on video and it always makes me laugh when I watch it - his use of eye contact is so communicative! Would also be really interested in reading your disertation Saintly!

That's the same sort of SOH ds3 does, he is a bit over the palce with re to severity,although is severe under CARs.

I wish I'd videoed DS2 tonight - he was trying to get down from the table while still eating his ice-cream and I was telling him to sit down. He kept moving his bum to the edge of the chair, catching my eye and laughing his head off.

Of course then I join in and start deliberately turning away and then looking at him out of the corner of my eye, which he thinks is even funnier - but doesn't really help the 'sitting at the table' rule reinforcement!

Hi
I'm a SALT and would agree that nearly every single 'theory' related to autism is overgeneralised and oversubscribed to. The difficulty with being an NHS SALT (as I am) is that unless you have the opportunity to work with a very minute caseload in great, great detail, you tend to see the general patterns rather than individual variation. I came to SALT from a background of being a home tutor on ABA programmes, which had the fortunate impact of making me question a lot of the 'givens', however even now I find I need to challenge my assumptions on an ongoing and continuous basis. Doing higher study helps, if for no other reason than it makes you realise how little you know. Very few SALTS have higher degrees e.g. MSc and this is a shame.. I would like to see our profession deny the title of 'Highly Specialist' to anyone who does not have an MSc as I think that research training is crucial here..

There is limited scope for seriously keeping up with research in the public health context anyway, and I fear that will only get worse as the budget strings tighten. Professionals need to have adequate research skills to filter through the vast amount of information out there in a critical and considered way. This SALT you speak of sounds like she is, like most people in the AHPs, accepting what she hears at training without question. That's something I think a great many SALTS are guilty of and I know I certainly was before I started my own MSc. I thought I was critical.. I just wasn't very good at it..

I think lack of training leads to lack of clarity and consensus among professionals. I have worked on a number of multidisciplinary diagnostic teams and have frequently seen two children with extremely similar profiles/scores on the ADOS come away with different dx - the reasons are often to do with 'gut instint' on some level, which to my mind is not really good enough in terms of giving someone a dx.

As anonandlikeit says:
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.

Time is pressured and condensed, people are poorly trained and so it becomes about the 'tick box'...

People also tend to view things through the prism of their current thinking.. so right now, this SALT believes in TOM as a grounding theory for autism. I did at one point, too. And I have met young people e.g. secondary school age) that seem to fit a profile of having specific deficits in TOM (though not just young people with ASD, also young people with specific language impairment) so I would say it is not utter rubbish as a theor, just not true for all and certainly not 'enough' as an all-encompassing theory for ASD. I can be critical of it because of my experience, perhaps your SALT hasn't had the experience to challenge it as of yet in her career? The process of altering your thinking and becoming more specialist is an ongoing one, too. My current 'thing' informing my own diagnostic practice relates to gestural development which I only recently realised I had misunderstood for some time - this is a new area of research and is as yet unproven but has some good theoretical plausability. I find myself focusing on this at present as people tend to do when they are assimilating new learning.. eventually, that learning will be subsumed by more learning and theories past and present will inform my future understanding of autism and its diagnosis.

The best thing is to truly get to know a child.. but there's so little time for this professionally, which is scandalous. Each and every young person I have ever met on the spectrum has been so unique, and with so many different overlapping patterns of difficulty and strength.. it's no wonder diagnosis is so flimsy.

Tom Muskett at the University of Sheffield did a very interesting PHD on how people find what they are looking for in autism diagnosis and that there is a great deal more individual variation and/or alternative ways of construing the deficits at the core of autism than the current diagnostic schedules allow for. I watched him speak and was bowled over..

"Tom Muskett at the University of Sheffield did a very interesting PHD on how people find what they are looking for in autism diagnosis"

I have often had thoughts alone those lines though don't have his experience. Is the PHd pubically available ?

we are just making our recent PhD's available, so maybe, or might be worth writing to him and seeing if he will provide a pdf, if not will be in the british library.

mrsbean78 - what an interesting post. Thanks

Yes it is a great post - maybe the OP could re post the text under its own thread title as this one has gone a bit stale (through no fault of OP but she was reviving an old one) and so not everyone is looking at it now but I think many on the board would be interested in what you have to say.

Should have said RP recent poster not OP

Interesting post, yes.

I think ToM is a good basic idea if we realise that once we have the stereotype of asd,all peoplewith it are humans and compeltely individual in how they present and are affected.

TM has been a great help tomein understanding things about myself, I'm empathic for sure and do think a lot about toehr peoples take on things- but it is almost alllearned rather than imprinted. I now that gried feels like X so so someone who is undergoing abreeavement or other loss should be shown sympathy and understanding, that opther peoples input and feelings are valuable so I ahve to account them in.... but although it is now automatic becuase I do it every day, my processing really does seem to differ from opther peopleand I think I am stillelarning just how much.

For example, I struggle with large gropups and yet again am going through the usual routine of 'she'snot exactly like us, burn the heretic (etc etc etc)' with some 'friends'. Formany years i thought that people should make the effort to accept me as I am (which is very far from a bad person,just- well if you could write a descrioption of Ms Librarian that would be me most palces I am not wholly comfortable IYSWIM). It is only now at 36 that I recognising the need for meto at elast try and meet them halfway and that my absolute rules of acceptance are if laudable, not based in the real world.
I may not be able to make smalltalk (why would you? Still dont get that...),discuss OK magazine and like hanginga round bars wearing pink feather boas and waving sex toys... but if I never do any of these things then I willfailtofall in with the group and eventually be forgotten and rejected. It's tribalism,really.

Likeliteral thining 9another thing I only realised I do, though i think it has been a masive boon academically) there are levelsofit that are far from absolute,and that includes on the spectrum. What we need isn;t a theory that allpeoplewith ASD can't do X Y orZ as that is clearly just not true,but an understanding that people on the spectrum may experience some effects from limitation of X, Y and Z: a far more fluid way of thinking with no less in the way of support for those with absolute issues but equally no failure to recognise those with part problems

I dont think that amde any sense, sory . I would post 'but I know what I mean' but heck,that would be poor ToM. sob.

And if you can read through todays typos, you deserve a medal

(grief not greed btw,I know about greed toothough sadly )

Gosh, I feel very lucky reading this.

I just got the dx yesterday. It was from a multidisciplinary meeting with ed-psych, clin psych, pead and SLT (forgive wrong nick names!). They have all met my son, 2 have been in school, one has been at home, he's seen them all in clinic.

They didn't really give much in the way of 'it must be this be cause of this' or give any impression of box ticking. My son has a very good sense of humour, great eye contact (when he's speaking, of course!), likes the absurd. Because he is very bright and we explain everything, he can explain what people might be thinking and feeling in different situations, and his verbal reasoning is really good. BUT despite these things that I thought might mask what I saw as AS, they still saw it.

He still shouts it his little sister playing pretend games in the same room as him because 'It's NOT a bun, it's a BALL' etc and refusing to take on board her world of fantasy.

I'm really lucky, I feel, as they really seemed to see the real him, and find what was wrong.

Very sad to hear that some of you struggle with such unimaginative people that you have to deal with. Can you ask to be referred to another person in some of those cases, for a second opinion etc?

Also, I may be confused, linglette (wouldn't be the first time!) but if you think he has AS, and the SALT thinks he has AS, does it matter if she disagrees with the specifics of how it affects him? If the dx would lead to further help and support you might need, surely that is worth getting? Or have I missed your point? Maybe you just don't want a label? (I know there are very good arguments for and against it).

I totally don't think you are in denial, though!

hiya!

glad you're getting good service!

that's the main thing!

it's too sunny to reply to the heavy dx stuff just now

Hiya again, it's not sunny any more so I can reply! Biggest reason not to get dx was of course that I didn't need to (he wasn't being branded as naughty, we were a happy family etc). It's only when you have that luxury that you can think about the theoretical side. I tend to think of these processing issues now in terms of how deep they go into the foundations of communication.

On top (level 1) you've got "mere" speech problems (though articulation issues are their own separate problem of course)- so it's not really a processing problem.
Level 2 you've got problems finding the word to use - so it's still just an expressive language problem but there's a processing element.
Level 3 you've got problems processing what other people are saying to you - receptive language problem - welcome to my life!
Level 4 you've got problems using gesture to show people stuff....(this was my DSs' deepest problem level).
Level 5 you've got problems following other people's gestures/eye pointing, etc. (Ds2 may have had a bit of this - can't remember)
Level 6 you've got problems following things like body language and facial expression
Level 7 you can't imitate.

The deeper it goes, the less good your theory of mind is going to be even if some of your top "levels" are quite good (as in Aspergers). Also, the deeper it goes, the more your key relationships are likely to be disrupted because the more you miss out on the signals that matter and perhaps overfocus on information that should be left till later (numbers, musical harmonies, etc). Greenspan defines the ASD borderline as the point where your relationships with your primary carers are disrupted.

This is why I now think that there's a kind of language-led autism that's exactly what me and my kids have - it just goes that bit deeper. So I think of them and me neither as autistic nor as "not-autistic".

Not sure if the NHS would have wanted to pay for the time it would take for SALT or paed. to engage with this point of view though!

Some of the Intensive Interaction therapists have highlighted research that shows that physical contact and our brain's understanding of it underlies all of this, and that our brains are very bad at wiring up those bits.

I was at a very good lecture last night from a scientist/autism specialist who has been looking at early interventions. He says there's now strong evidence that autistic individuals need much longer and better defined signals, contact, gestures, word-play etc from carers in the early years (and sometimes much longer) to build on the brain's links. It doesn't stop us being autistic, but it allows us to compensate for a reasonable amount of it.

Big research news out next month, we hear.

So, real two-way communication with others etc can't happen properly before the brain has wired up where its body is and what all those signals mean in the first place, and our brains are designed differently, so we take a lot longer and need much 'bigger' signals over a much longer timeframe than other people. Yup, I'd agree with that.

I don't think you can talk about 'autism' as one thing though. So I don't think anyone should be generalising. I agree with lingle that there is a group where language is a huge problem. I;m not sure that ds1's relationships with his primary carer's is that affected. He interacts with us fairly well - he uses eye contact and gesture. What he has is almost no language at all, so even when he's using everything he resource he has he is very severely disabled. There's nothing written about autism of this form though. There are a few children like it in my research. 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.

Every time my son develops and new communicative ability his interaction increases dramatically. So recently he has learned to point at himself it indicate himself. This has enormously increased his ability to get us to understand what he wants or is talking about. And he uses it all the time.

He is held back by the tools of communication. By not having speech, by not having receptive language by not having understanding of pointing. I presume some part of his brain dealing with language has been well and truly knocked out. I think if he had access to those basic tools he would use them, and appropriately.