Monday, May 9, 2011
"He doesn't seem autistic to me"
"He doesn't seem autistic to me" is one of those common phrases heard by parents of ASD children that can provoke all sorts of emotions. My fellow moms have expressed their anger, frustration, and sadness when an ignorant person makes a remark like this.
Today I heard this from the woman who runs Wylie's school- a wonderful BCBA who knows Wylie personally and often remarks how much he reminds her of her little toe-headed toddler who can also be spotted running around the building along with the other kids. She works closely with his team, monitors his progress, and has always been proactive when it comes to his behavioral treatment plan. When she said this to me, I was mostly perplexed.
I think she's wrong, by the way. And I argued with her. I’m not even that puzzled that a professional might say something like that about my son, but. I find it strange. I find it strange because there are other MUCH more high functioning children attending her school than Wylie. I think I have to pull the other parents aside and figure out if she’s ever said such a thing to them, as well. HAHA! The conversation I had with her went something like this:
“What specifically do you think is missing from his characteristics to warrant an ASD diagnosis??”
“Well. I just wouldn’t call his problems ‘pervasive’ in the strictest sense. I think he has more of a language disorder than anything else. Socially he’s reserved, but not exactly withdrawn. He’s laid back. Aloof. Most of the kids I see are either withdrawn, overwhelmed to the point of not being able to interact, or socially anxious. That does not describe Wylie. He just isn’t really motivated to be social.”
“Hmm. It’s a spectrum disorder, right? It could manifest differently with different kids, right?”
“Yes… but he just is getting everything academically. Everything we ask him to do, he does. He understands everything.”
“Hmm. He’s 2 and he doesn’t really get 2 step commands. It took us a while to get 1 step commands.”
“Language issue. Sensory processing issue, maybe.” (For the record, she has basically conceded that he has social, language, and communication dysfunctions at this point… now she’s bringing up sensory processing. Sounds… a lot… like autism… to me…)
This woman and my developmental pediatrician are, like, totally into each other, too. And my developmental pediatrician is always seeing Wylie in the WORST light, and seems to always bum me out using a pretty grim deficit model to describe him. Heh. They take each other’s opinions very seriously, and yet they are at opposite opinions of Wylie.
I’m just confused. It is really interesting how two different people looking at the same child from different perspectives can come up with completely different conclusions about him. I don’t find the BCBA ignorant or dense or less than diligent when it comes to her research or her ABA treatment. She has actually persuaded me several times when I challenged her course of action (most recently she has been suggesting replacing some of his one on one DTT (discrete trial training) hours with social groups and I originally opposed). It IS true that the people here seem to be more on the severe end of the spectrum. I don’t exactly see a lot of aspies at his school. Wylie is obviously intelligent, and even Mr. Pessimistic Developmental Ped has used the word “gifted” to describe him. He has no splinter skills and does not appear to be “profoundly gifted” or a “genius,” but he’s bright.
“I really think he needs to be in regular pre-school. I would even suggest not telling them about the diagnosis. I think he will easily get the academics of it. We are teaching him how to learn from his peers. The concern I have with Wylie is that he just seems like he could really care less about social interaction, and some pre-schools aren’t going to push that interaction. He doesn’t really have any serious behavior problems. We could go interview some schools together, tell them he’s shy, and see if they can pair him up with maybe a bossy older kid with an assertive personality to lead him around.”
Uh. Hmm. A little dumbfounded. But I think about it. Perhaps some preschool director WOULDN’T realize Wylie isn’t quite sure who “Mommy” is. I’m not really against hiding the diagnosis in this case, but it doesn’t really sit well with me that A) I think his therapist actually doubts his diagnosis at this point and B) I’m thinking he really wouldn’t “pass.” Then again, this isn’t really something that needs to happen tomorrow—I don’t think she is completely off base when she says he may be ready for preschool by the time he’s 3. He’s definitely a smart cookie and his language isn’t stagnant—he makes spontaneous requests for familiar items, his vocabulary has expanded since his 2nd birthday, he sometimes (rarely) strings words together… his stims are still quite severe, he screams and squeals and jumps and jogs in place… repeats nonsense phrases like “Tickletickletickle DAH… tickletickletickle DAH…” I could see him distracting a whole classroom.
Oh, anyway. Who knows. Structured Preschool with academic credentials sounds a little expensive, too. I’ll start looking into it. I still haven’t really perfected his current treatment right now— I still want to look at some additional speech therapy.
It’s a lot of work. Wylie, Mommy’s not trying to rob you of your childhood, I promise. But who are you kidding, you would waste a lot of it watching Spongebob reruns if it weren’t for me.