Wednesday, October 03, 2007

Responding to Dimitra Daisy

Dimitra Daisy delurked to write a long and very good comment on the previous post, Do disorders come in natural kinds.

If you want a good indication of whether Frankie has Aspergers or not (but only an indication!) look to see if he looks at people's faces to get information about things. Ifyou were frowning because you can't possibly hear another minute of talking about WoW, would he be able to tell? And, even if he can, does he look out for this sort of information? He might be able to tell you are angry, but does he check to see how you feel when he's talking with you? Does he do it consistently?

I want to answer these questions, and those of you who know more about Asperger's can give me feedback if you have any.

First answer: Yes, he can get information from faces, or at least faces with small noises. I gave an example a while back. He came into the living room with something messy and I made a little "uh" sound and he turned and looked me right in the face waiting for me to tell him what was wrong. I told him that the thing he had should stay in the kitchen. At the time I thought he was definitely "reading my face" but as I type this I wonder if he was really responding the distress noise.

Another example would be the other day when he asked me if I thought blood elves were "attracting" I said "Yes, definitely" with a total deadpan followed by a tiny smile. He burst out laughing. Again, he seemed to understand that my face was telling him something other than what my words were saying.

Most of the time when he is talking to someone he does make eye contact.

Second answer: not when he is caught up in an obsession or is frustrated. When he is worked up about WoW he does not check your face to see how you are responding to the conversation. You cannot get him to stop talking about it by giving him a bored face or annoyed face (not that I have tried that for long). I have always thought about it as the obsession/frustration being too strong to be stopped by a facial expression. Sometimes when we have told him that we need him to stop talking about something he has left the room -- not in a huff. It just seems like he knows that is the only way he can not talk to us.

I think it might be the case that he looks at our faces when he is asking for information and it seems like he can "read" them. When we ask him for information he is less likely to look, and when he seems compelled to tell us something he either doesn't look, doesn't "read" or doesn't use what he has read to guide his actions. If he has started to tell me about something he HAS TO FINISH even if I tell him early on "yes, I do know about that" or even "remember, I watched that show with you."

And a comment or two: Frankie has excellent eye contact for a kid in the system. Maybe it was because in the centers/institutions they made him. I know that at his current school they insist upon it. Maybe the group homes and treatment center were like that. In any case, Frankie generally does better than my other kids did. With most of my kids, direct and sustained eye contact was a pretty good indication that the kid was trying to deceive me.

Frankie does not monitor emotions like the other kids did. All the kids learn to insulate themselves from the emotions of others. Some try not to care about what you think. Others try to maintain a sense of control by keeping you wound up. However, they were all very aware of my emotional state. Part of how these kids survive is by watching the adults carefully. So though they might mistake me being tired and cranky with me being angry, they were always aware. Frankie though does not monitor and does not even notice more subtle emotional states. He also does not suspect me of lying if I tell him that I am just tired and not angry.


  1. PDD and autism in general come in such a wide spectrum that it truly is dependent on whether the evaluator wants to assign that diagnosis or not.

    My adoptive son has severe FAS and struggles with other symptoms which mimmick ADD, OCD, SID, etc. just about anything you want to attach letters to. Our psychiatrist had a very iontersting talk with me one day when Dustin was hospitalized. He said "Dustin is pretty definitely a child with PDD. But what I care more about is 1. what can we do to help him cope and 2. what medications can help him level out. I couldn't care less about what diagnosis we assign him.

    Dustin struggles with Schizophrenia when he is completely off medication, and is on the "mother of all anti-psychotics". You wouldn't think that that medication helps all the other symptoms more than anything else we have tried in 6 years, but it does.

    The more I travel this road with Dustin the more I understand it is all about chemical make-up and medication cocktails and plain old trial and error.

    You seem as though you are doing ALL the right things! Rely on your gut and educate yourself as much as you can. IMHO, forget about labels, they just confuse ya.

    (Maybe I am commenting way too much, I have a habit of putting in my 2 cents . . . okay maybe 20 cents) :)

  2. I have thought about this a lot, and, for what a lot of thinking by a stranger halfway across the world is worth, here's what I think:

    Frankie obviously displays (high-functioning) autistic traits. A lot of his behaviour fits the 'Asperger's' pattern. I could even say that your major objection (that children with Asperger's have difficult understanding other people's emotions and Frankie has trouble regulating his own) is not necessarily valid. Some people (well, the RDI people, but you can't find this on their website easily) think of autism as an information processing disorder; more specifically, that individuals with autism have trouble processing information in a fluid, dymamic manner. (There's a short explanation of this here if you're interested.) Not being able to process other people's feelings is a symptom of that. And Frankie (and anyone else) could be doing it but with difficulty, at great cost to his resources, inconsistently etc. and he could still be autistic, especially if he displayed problems in this sort of processing in general.

    Also, I have heard the proposition that the "relationship with the self" be added to the core deficits of autism, and Frankie definitely has a problem with that. And with episodic memory (which includes learning from experience).

    That said, so do many neurotypical people too. And my gut feeling (for what it's worth) is that Frankie may be displaying autistic-like behaviour but this most likely is largely a symptom of something else. I think the thing is, there's so many things going on inside him right now, you can't possibly tell them apart.

    Another question to ask yourself is whether you think he would be like this if he had had a more or less "normal" upbringing so far. Of course this is purely hypothetical but it might help illuminate the situation. Or it might not. I don't know.

    And finally, and perhaps most importantly: does the diagnosis at this point matter? (Probably not, as he has every other reason to get services anyway.) And, would you and other people working with him, benefit from understanding the mechanics that produce autistic behaviour? (Probably yes.)

    I hope this helps a little bit...

  3. Thanks Daisy. This is very helpful. I am looking forward to getting his psych eval done. I think that regardless of the diagnosis he is given the assessment of someone who has been trained to assess will help. We should at the very least have a better idea of his strengths and weaknesses.

    Just to be clear, and maybe I have already been clear, I don't have an objection to parenting a child with Asperger's. Having known a couple of people who do have Asperger's my initial response to the thought that Frankie might was just that he did not seem like them. Not a sophisticated diagnosis technique, I know.

    In any case, I am hopeful that the evaluation gives us insight and whatever labels are attached to him he will still be Frankie, and that could never be a bad thing.

  4. I don't know about anybody else, but it is very clear to me that you have no objection whatsoever parenting Frankie, whatever the label that is attached to him.

    And since we're making things clear, I wasn't trying to prove that he does or doesn't have Asperger's. I was just offering some of the information I have gathered over the years (years of obsessive blog- and book-reading and living with somebody who was so high-functioning, he didn't get diagnosed until he was twenty-six).

    Anyway. Good luck, to you and to Frankie!

  5. Daisy,

    I do appreciate your insight -- please keep offering anything you have!

    I don't know how much of the results of his evaluation I will share on the private or public blog. I would respond to you via email, but I am not getting yours when you comment.

  6. One more thing...I might write a post on this, but I'm not ready to.

    I do have complex feelings I don't understand about the different possible diagnoses that Frankie might get. Asperger's is the least stigmatizing thing that has been brought up. So much so, that I haven't even named some of the others.

    The statement that I would still parent him was an edit. I originally said, "I don't mind if he has Asperger's." I wrote that and knew it was a lie. I do mind. It would make me sad if that were the diagnosis.

    And I don't get it, because I think it offers a better prognosis than some of the other things.

    This is what I wanted to send you in an email. I'm not quite ready to have it in the blog though. Hopefully you will come back to this post and read it. Then I will either delete it or write about it.


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