Little doubts about AS dx
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| Thu, 09-15-2005 - 2:42am |
I know I've asked about this before, so please bear with me. Every time I read about how kids with Asperger's have difficulty with imagining things that aren't real, I feel really confused about my son's diagnosis. He's dx with Asperger's, and treating him AS IF he has AS has always been helpful...but he's so unlike any kids that are described in books about AS. He is ALWAYS pretending. He loves fictional books. In fact he gets pretty obsessed with them. But he refuses to read non-fiction at all. I've gotten him all kinds of books, like some of that DK series with beautiful pictures of colorful chemistry experiements and volcanoes. He flat out REFUSES to read it. He says, "It's boring."
But his imagination is just fine. I suppose, when I think about it, a lot of his imaginary play is based on a book or characters that he has already been exposed to...but it's not all scripting. There is a bit of that, but he pretends Luke Piewalker and Darth Shader come over to his house for a sleep-over and birthday party. That's pretty imaginative, I think. So many books on Aspergers talk about how AS people are unable to imagine. For that matter, I think he also has that "theory of mind" at least as well as any other 7 year old boy. A kid at school was miserable, and crying softly, and NONE of the boys near him seemed to notice, not just mine.
When I look at the diagnostic criteria, I really have a hard time seeing how could be diagnosed with AS, now that he is on a mood stabilizer that works (also dx with bipolar). He does "perserverate", and I suppose a lot of what he does could be calling "stimming", although I'm not even sure of that. And he certainly marches to the beat of a different drummer. Heck, he doesn't march; he spins and leaps! I'm trying to help his teacher understand him, but when I look at Asperger's books and resources, I find nothing like *him* in them.
Oh well, I guess the label isn't so important as long as he gets what he needs to be his best...but I'm not sure that he is. Any thoughts would be greatly appreciated.
Evelyn :)

Dear Evelyn,
What do we say ... If you've met a person with autism, you've met a person with autism.
I understand your thoughts completely, and sometimes Malcolm (age 8)seems so gosh darned NORMAL and then other times, well, NOT. His dx is PDD-NOS not AS because his language developed later and he had unbelievable echolalia when young. Now loads of language, almost never echolalia, uses his imagination and even interactively with friends, emphathises SOMETIMES with people he loves. He doesn't sound like a professor and doesn't obsess on factual subject matter, is able to carry on conversations much of the time,yet every once in awhile his sentences come out awkwardly. Usually once it comes out awkward, he then corrects the sentence.
Dawn Prince-Hughes, AS author, describes "theory of mind" as not being able to sense boundaries, having to work hard to know that not everyone is feeling what she is feeling and having to guess what they are feeling based on hypothesis and clues ... I see that often in Malcolm, but he is smart and figuring out other people and their feelings intellectually and with practise, even sensing others more. BUT when stressed, as in the last month after Day Camp, very hard for him to detach focus from his own struggles and pay attention to others. Listening to videos and books in his head, telling himself stories. He has needed lots of deep pressure and connection, alone time... Just now in second week of ASD school, back into full swing of therapeutic life, is he relaxing and beginning to interact all day again and WHEW! We are relieved. That stress stuff wipes us all out. Meltdowns, unfocused and far away, not listening, AUGH!
So, I see (again) that he is somewhere on the spectrum, sometimes more and sometimes less. He did so very well the first 4 weeks of camp sorting things out and making decisions for himself, but over time the confusion mounted.
Of course, PDD-NOS in and of itself is a catch-all dx, but I don't mind it if it helps people stop and consider what he might be up against in interacting with others. Except, of course, most people are so clueless about any difference in spectrium dx'es anyways. Autism, Asperger's, all Greek unless it's Rainman. If appropriate, I just say "mild autism" and I think that helps people understand more than any other description...
Just my thoughts,
Sara
ilovemalcolm
Evelyn,
If you have met one person with AS you've met one person with AS. Often the books talk about what is "typical". Sometimes I think they just get info from other books than actual experience with AS people. I have met loads of ASers and rarely do they fit those books to a T. There are some similarities but some differences too.
What makes a diagnosis is if they have enough of the diagnostic criteria to a significant enough degree. So make believe is one thing. And not all kids will have the same problem with Make believe as others. Sure some will be all into only fact type books and no fiction. If that were the main diagnostic criteria my hubby would be an Aspie and my kids would not, lol. They both do get into some nonfiction and obsessed with learning facts but they can (especially Mike) easily become obsessed with certain fiction. Not all but if it is an interest area like scifi he will.
Some, I would even say many, actually can get obsessed with certain kinds of fiction. How many aspies are obsessed by sci-fi type stories like star wars, harry potter, etc. Sometimes to a point (when young) that they have a problem separating what is fictional and what is not. Sometimes they will have a problem with novel imagination. In other words will re-enact those stories over and over but couldn't write thier own.
What really makes an autism diagnosis is the theory of Mind. Ok, you guys are going to hate me but I was actually talking to Candes about this yesterday so I can impart some of her wisdom. Folks can have a PDD diagnosis with various PDD trait but to have a true autism spectrum diagnosis you really have to lack theory of mind. Some theory of mind can be taught to a degree and some very smart ones will learn it some on thier own, but it is more a problem solving logic thing than natural. So for instance, sometimes my kids will expect me to know something when I wasn't even there. They have been able to learn through repetition that if I wasn't with them I don't know and they have to arrange thier conversation that way, but it was something they had to learn.
This would even be in school. "Mom, remember when I went to science...." "Cait, was I there?" "No", "Then how would I remember? You have to tell me about it".
In speech Cait is still working on conversation and how to relate information to another so they have enough information to understand but not to load them down with details. She will just go over a list of details expecting us to know what she is talking about.
Renee
I say 1st you must always trust your gut feeling about a situation. You will ALWAYS know more about your child than any other "expert."
That being said, it is terrbily hard to correctly diagnose these kids. Our school special education director said that many psychs. are now deliberately diagnosis "autism" - and something he called "educational autism," because there is now more funding money to get services for kids with this diagnosis as opposed to ones with ADHD, SID, etc. What this said to me was that "labeling" these kids is a kind of always morphing task.
The reality that we spoke of with this school consultant was that whatever diagnosis we had (or could have), the real concern is that our child is exactly who he is. A strange and quirky brew of many different traits, challenges and abilities. Somehow, we have to make a plan that fits him. I think this is probably true of any child who does not fall in the middle of that nice "typical" bell-curve.
What you have described so far sounds like SID and *something.* Whatever that something is, you are best equipped to deal with the subtle differences.
Does your son speak literally? Is he able to deal with abstract concepts - or does he follow your verbal instructions to the "word." For example, our AS boy is VERY creative. In fact, he seems to excel in poetry and drama. He loves fantasy books (yes, he obsses about them) and he always has stories running in his head. He can even seem very "normal." But, if you ask him to "Put that thing away right now...." it causes him to blank out and turn off emotionally. Why? Because everything about what I just said to him was not "specific" enough. What if he had something in his pocket and something in his hand - now he's wondering what "thing" I'm referring to. Also, "away" is way too ambigous. In his mind does that mean put it someplace far, put it in a drawer, take it out of my site, the options are too many for him and he stands there in confusion and inaction. "Now" can also hang him up a bit - if the place he thinks he's supposed to take something can't happen within the next 2 seconds, well, he has a logic problem that he can't resolve, and so he stands there not acting. He can't say to me "But what do you mean?" He can't even really tell me what about what I just said has caused him to shut down or become confused. In fact, once this has happened, his eyes are kind of spaced out and he becomes very "unavailable."
Prior to AS we had ADHD and Turrette's diagnosis - both these things were labels for specific "symptoms" that do exist.
In our younger son, we've had a diagnosis of ADHD and more recently severe SID. His school is considering getting an "educational autistic" diagnosis for him because he can be just fine until sensory stuff sets him off and then, for different reasons, he is very unavailable as well. His version of "unavailable" is more troublesome. He becomes manic.
It's a complicated recipe for sure, and if a diagnosis ensures you get services and help, I'm kind of reaching the point where I don't care so much what they say, just that they address our needs and keep our children thriving.
Jackie
Thank you, everyone! Jackie, you said some things about asking your son to pick up his toys, and boy did that sound familiar! I can say, "David, you need to pick up all those Harry Potter Legos" and nothing will happen. So I say, "David, please pick up all of those Harry Potter Lego pieces and put them in the Harry Potter Lego bin." Provided he is "available", he'll pick up the Harry Potter Legos and put them in the bin (reluctantly). After a LONG time, he'll say, "Mom, am I done?" I look and see that he has made a good effort putting the H.P. Legos into the bin, but there are still a small scattering of Legos still there on the carpet. When I ask about those, his voice goes up an octave and he says, "Those aren't Harry Potter pieces! THIS one is Alpha Team!! And these are Star Wars!! And this one is from Dad's Lego Mindstorm set!!"
A lot of times he will recognize that he's taking something literally, I think, and makes a little joke of it. Like, if I say, "Throw that in the trash can." he might smile and say, "Okay! If you really want me to THROW it, I will...and he'll pretend to throw it."
I think it was Renee who said that she thinks a lot of the books on ASD's get their descriptions from other books. It a good point, and I agree. The theory of mind thing still confuses me sometimes. Like, David sometimes shows empathy, like if his little brother gets hurt, or if he sees someone being unkind to another person. Then again, whenever anyone has a birthday, he INSISTS on getting them a Bionicle, because he can't seem to grasp the idea that Grandma likes knitting and needlepoint, but NOT Bionicles. In fact, you can't actually say that so-and-so "doesn't like Bionicles" because that seems to cause him great distress.
One thing that confuses me sometimes, is that a lot of the stuff I read about ASD behaviors makes me say, "What? *I* do that!" LOL! Like, when I was in high school, I was absolutely obsessed with Stevie Nicks. I had a whole collection of these totally inane interviews that I had memorized verbatim, with every little cough, and my room was wallpapered with posters. I remember playing my Fleetwood Mac records at home, and if someone started talking during a Stevie Nicks song, I'd feel all sick inside, because I wanted them to hear it, knowing full well that my mom was more into Luciano Pavarotti, and my sister was more into Ted Nugent. Have any of you listened to a Stevie Nicks song lately? Snooze!! What was I thinking!! LOL! And I don't think I do that anymore with anything...but I understand the feeling.
Anyway, thanks for all of your thoughtful responses.
Evelyn
Evelyn,
David is a smart guy and what you said about empathy is something that AS folks can and will do. In fact, it is similar type things that kept Mike from a diagnosis for years. There are also varying degrees of mindblindness or lack of theory of minds.
As for crying or someone getting hurt. Many can learn through a logical means the appropriate response to if someone is hurt or the signs that if someone is crying they are sad. But it isn't as automatic as it is with others. Oh it is really hard to explain. As for breaking the rules or if someone is unkind, ASers are notorious for having an extreme sense of right and wrong.
Examples I think will be clearer. Mike loves his little brother and wouldn't want to see hard come to him, but that doesn't stop him from hurting him. Once, Dave was using potty talk (breaking a rule). Mike didn't want Dave to get into trouble so he was smothering him with a pillow and dave couldn't breathe. He understood that it would feel bad to dave to get into trouble but he didn't understand how Dave felt scared and hurt when he was being smothered.
As for the rules, last year a boy from Emily's class told her to give him $10,000 or his mom would give emily 25 pink slips. Mike followed that boy for days perseverating on how that was wrong. He couldn't threaten his sister. It was unkind, etc. What Mike didn't realize was that he was scaring the bejeepers out of this boy and very nearly on the verge of suspension himself.
We all have some AS traits. Every human I think has one or 2 ASD traits. What makes ASD is when they have a signicant number of them to a significant degree that it causes problesm with thier ability to function. Then to be truly ASD one must be significantly mindblind.
Renee
Hi Evelyn,
My ds is also bipolar and since the mood stabilizer took hold