Theory of Mind

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There is a reason that the problems with Theory of Mind is not in the DSM criteria for diagnosis. The majority of Theory of Mind tests were developed for ages 4-6. Most children have Theory of Mind at this level by age four. The problem with these tests is they can tell us if a child has a really low theory of mind if they fail the test, but they cannot tell us if they have a theory of mind lower than expected but not at the lowest rung. It is like testing reading skills using only a first grade reader. If they can't read the first grade reader, and they are much older, then obviously they have a problem reading. However, if they can read the first grade reader, this does not tell us if they reading at a third grade level in 7th grade. There are a few measures being worked on to measure Theory of Mind at different age level, but those measures are not developed enough for full evaluation purposes yet.

DS is 11, and sometimes he shows good theory of mind, but other times he doesn't. He would not meet your therapist's criterion, but he very clearly has AS because the interventions designed for autistic children work for him. We weren't sure about the AS diagnosis at first, but when we were given the ADOS, they went over it carefully and explained exactly how he met the criterion.

The bigger problem is that the interventions for ODD and the interventions for AS are different. While CBT can help for both, it only works for kids on the spectrum who are able to communicate well - DS's speech was just fine, but his pragmatics were so poor that talk therapy helped very little. DS also could not identify any emotional states besides happiness and anger - and thus would let himself get worked up into a fury before he started taking care of the problem - no help for that in ODD, but AS kids spend a lot of time in therapy learning to label emotional states.

I think this is what you need to bring to this doctor: will your child be able to use the tools offered to kids with ODD? If not, how do they explain that?

THIS /\/\ THIS /\/\ THIS /\/\

This is exactly what we are working on with him right now. Labeling his emotional states. We have always had to do this. He is either calm or he is furious. There is only rarely an in between, and probably we only see it at home.

And you are exactly right about the ODD. I was very adamant - you put that diagnosis in the hands of the wrong person and you have given them license to look at the behavior ONLY, apply their rigid ideas about how to deal with the behavior, and very much ruin my son. We had such a teacher in grade 2, who took the view that my son was wilful and naughty and that stringent behavioral guidelines (with no skill instruction!) would do the trick. I have just been reviewing his report cards from K to 3, and it is very apparent where the major problems behaviorally began occuring. The social issues were always present, from K straight through, but they were exacerbated in grade 2. The task refusal and shut down behavior really took hold in grade 2, it is very clear in the report cards.

I personally think it is irresponsible to consider putting that type of dx in a report when you know that is not what it is! All for a category? No thank you.

Unfortunately, though our son can show high verbal ability, he is also unable to grasp the concept of CBT at this time.

Thanks for your insight

cutiecrystalmom

We have tried everything. I have compiled reports from our mental health clinician, the school counselor (who wrote an excellent letter detailing how well my son can present in 1:1 adult situations initially but as time goes on you really get a sense of what his challenges are), occupational therapy, speech therapy. Perhaps I am crazy, perhaps I am in denial. It is difficult when those around us agree with us though.

And sadly, in our province, you cannot get a recognized diagnosis without the correlation of the ADI-R and the ADOS. So, if you don't meet the criteria on the ADOS, you don't get the diagnosis. My honest opinion is he will never meet the criteria on the ADOS.

Can you see if you can get a diagnosis for the things that put him on the spectrum separately? Pragmatic Language Impairment is a diagnosis in and of itself, and will get you the speech therapy and communication skills you need. Alexithymia http://en.wikipedia.org/wiki/Alexithymia is the word for not being able to identify emotional states.

The specific label and diagnosis themselves don't really matter - they're just words; it's the INTERVENTIONS you want to go for. What you need to do is piece together things so that you back into the therapies and support your child needs. If they want to call him a little blue alien from Mars, but they give him the tools to learn to label and manage his emotions, then I'd say go for it.

Misdiagnosis, as you are learning, is more problematic because you can get stuck with stuff that either doesn't work or makes things worse.

PS. Alexithymia can be a symptom of poor Theory of Mind. Make sure you bring that up, and ask them to explain how it relates.

There are many aspects to Theory of Mind. Emotional interpretation (social reasoning) is just one. Others areas where impaired theory of mind are apparent:
apparent rudeness
lacking introspection
literal interpetations
paranoia
pragmatic language issues
global problem solving issues
trouble reading facial expressions
rigidity and anxiety

The impairments that a good diagnostician should be looking for are "when contrasted with same aged peers", not whether or not they are present at all.

Tony Attwood states "Typical children, especially after the age of five, are remarkably astute at perceiving and understanding social cues that indicate thoughts and feelings. It is as though their mind prioritizes social cues above other information in their environment."

While your son might be able to accurately describe what emotion a frog is having within a story (children's books are usually very pronounced in their depictions) that doesn't mean he is lacking theory of mind issues.

I would go back to the diagnostician and go through the DSM criteria and find out which ones she does agree he has and which ones he doesn't so you can be more clear on your understanding of why he wasn't diagnosed.

I really like the idea of going through the criteria with her to find out why she doesn't think he fits. While we don't get to meet face to face again, I am going to compile a list of questions. One of my big things is that if she is going to dx ADHD Combined for her to tell us which areas of hyperactivity he fits in, because he does not meet anywhere near six of the criteria. So it would make sense that I also ask about the criteria for AS. Thank You!

I will look into this for sure. I am really concerned with her explaining it in the way she is wanting to explain it, given that no one else sees it that way, really. Perhaps she also needs to be really clear in her report about how his concrete, rigid (sometimes excessively), controlling behavior fits within her dx (and not just a random comment that it can't be explained by either anxiety or adhd, like the last assessment said).

I agree that this is most likely the problem. AS children are smart, and do learn certain aspects of theory of mind, just not at the same level and pace as an NT child.

The test given in the first post seemed inappropriate to me for the age of the child.

I think the later posts give some good ideas on how to approach the doctor about this.

I am so glad this thread got started! The above is exactly what we are seeing too. Of course our son is younger, but it seems knowing happy-sad-angry is about all he can identify. And yes, his two emotions tend to be calm or melt-down angry. Well, he smiles sometimes--kind of an awkward 'fake' smile and he gets very hyper, silly/laughy when playing with his sister and the cat. But that's mostly just some hyper, self-stimming behavior too.
We found out today they will do the ADI-R next week and then the week after that the ADOS. I'll probably make my own post on that sometime tonight.

I was reading this today and thought it applied well to the conversation at hand.

The universality of theory of mind deficits in autism have been questioned simply because a proportion of children with autism or the related condition of Asperger Syndrome pass first-order tests. First-order tests, including most of those reviewed above, involve simply inferring one person’s mental state, e.g., what John thinks. Happe points out that this need not challenge the universality claim, since there are no reported cases of autism spectrum disorder who pass first order theory of mind tests at the right mental age. Thus, an individual with high-functioning autism or Asperger Syndrome, who by definition has normal intelligence, should be able to pass such tests at 3-4 years of age. Typically however, they are older than this when they pass such tests. In children with autism, Happe finds that on average a verbal mental age of 9 years old is needed before passing of such tests is seen, and that the youngest mental age of an individual with autism passing such tests is 5.5 years (Happe, 1995).

from http://www.autism-community.com/wp-cont ... nd-ASD.pdf

Another point to the TOM discussion: many kids with Aspergers Syndrome are aware they are "different" and have learned to hide it. My son was often able to come up with the "right" answer, or the answer he knew was expected (which, I suppose, showed a certain amount of TOM in the same way that the DOCTOR computer program does...) He might have answered the frog question "correctly" without actually making the inference or understanding what the interaction was about.

Well, I have taken the morning and written a letter to the psychologist who completed our son's assessment. In it I defined why we believe our son fits on the spectrum and asked her for very specific information as to how she believes he would fit within ADHD - going through the criteria and adding comments on my son's behavior. I know it won't make any difference, but at least I have made my voice heard. Thanks everyone for your support

cutiecrystalmom

I do not know how the ADOS is scored, nor do I know it's strengths or weaknesses. Nor do I recall what I would have thought about this frog you speak of. However I could hold a conversation with an adult provided the adult actively engaged me or we were speaking of a subject of my interest.

I understood other individuals had feelings and I usually only had the most altruistic of intentions. I also understood my cat, and most other animals as well, were sentient beings. The issue was I did not always catch the non-verbal body language that was meant to communicate to me the status of others in certain situations, nor did the concept of what others thought of me occur to me much.

My daughter loves our cat Sophie, calls her "her cat", and loves on her a lot. But I also catch her being mean to her at times. I've caught her holding the cat dangling by her front legs and I've caught her squeezing her. When I tell her not to do that she acts like she doesn't think it hurts the cat. How can I get her to understand what hurts the cat?--the cat screaming doesn't seem to make the point. Either she doesn't understand it hurts the cat or she is purposely mean to the cat-I need to find out which one it is.

How old is your daughter? I was mean to pets up until I was in my preteens before I understood. I know most kids know better at that age but some don't. Even nine year olds understand too and seven year olds.