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 Socially he’s reserved, but not exactly withdrawn.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 Most of the kids I see are either withdrawn, overwhelmed to the point of not being able to interact, or socially anxious.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.


  1. I can relate a lot to this post. When my son (who is now almost 7) was younger, many people would basically try to talk me out of the autism Dx. Even now, I have people express doubts at times. I read "Overcoming Autism" and in it, the author asserts that the diagnosis doesn't really matter. What matters is that you treat the child's autistic symptoms in a way that will help him cope in life.

    I know it's still annoying and perplexing to have "experts" disagree, but that's the problem with diagnosing autism--it's so subjective. What's most important is that you are helping Wylie with the areas in which he's delayed. Trust your gut, because you know him more than anyone.

    PS. I found your blog on a comment you left on my post on the Thinking Person's Guide to Autism. Glad to meet you!

  2. Thank you for your kind words, Patty. Nice to meet you! At least my son's therapist agrees he needs the treatment. I guess I'm MORE concerned that we are not on the same page about his function level. My son is sooo smart, but he's so detached. I'm positive he can get there, but I'm nervous about sneaking him into a preschool without figuring a way to make sure his needs are met and they are equipped to handle him. Whew, thanks for letting me vent a little!

  3. If it helps any, we autistic adults get this kind of thing All. The. Time. I can't tell you how many people have said to me "You're not autistic!" or "You don't seem autistic!" or something else that makes my head very tired. And it's simply because we don't fit some sort of stereotype that people have in their heads -- and yes, professionals have these stereotypes just as much as anyone else.

    Like your son, I was very gifted academically. I spoke late, but I read very early (at 3). And I was always at the top of my class right through graduate school. It doesn't make me less autistic. It just means that I ought to get some credit for how hard I've worked to accomplish what I have!

    As your son grows, listen to him as he lets you know how he experiences the world. The internal experience is what counts. Plenty of us learn the skills we need to navigate the world, and can appear quite passably "normal," but inside, we live the experience of autism, and it's quite challenging and very hard work.


  4. Absolutely, Rachel, I would agree with you. I have very high expectations for my son and am proud of what he has already accomplished.

  5. I have a similar problem. I have a regular pediatrician who is not always sold on the autism diagnosis and a developmental pediatrician who is sold and them some and they are actually in the same practice. I will say...I think she doesn't understand spectrum disorders. Everything she was describing was right in line with an autism diagnosis. I also know that many children with autism are "bright". My son is very bright, but placing him in a regular pre-school with expectations that are going to be hard to understand and comprehend could be a very big mistake and a real setback for him. I think "pairing him with an assertive, bossy older child" is not rehabilitation. That comment was really scary to he could be bullied into interaction. I like the fact that you always consider the options but I don't think making sure your son gets all the therapies and services he needs according to his diagnosis is "robbing him of his childhood". People can get in your head and make you doubt yourself. It happens to me all the time.

  6. Aw, thank you, Jessica. Yes, you understand my real concern here... regardless of what she thinks, I have to weigh her advice to mainstream him by PRESCHOOL carefully. This is a great time to use one on one resources and really try to catch him up to his peers. Obviously mainstreaming isn't for every child on the spectrum, but with Wylie's functioning, I think there is a good chance if we get his language caught up enough, it will be a good fit for him. Someday. Maybe not preschool. (Shrug) but maybe. While I don't think it is necessary for him to be quickly mainstreamed and "passing for normal" I do want to make sure I always expect him to rise to the challenges he IS capable of... but I can't throw him under a bus, either, you know, can't leave him without any support. Thanks, Jessica.

  7. Hmm. For whatever reason, some comments from my last post were deleted, and some of my own were as well, so. Hope no one thinks I deleted something they said.. I appreciated everybody's opinions very much and even responded... But 4 or 5 comments are missing now. Just didn't want anything to check back on this and think I totally rejected their comment, thank you everybody for your input! :)

  8. That has GOT to be frustrating to hear. You know what your son is like. If you see that he is having severe difficulties, then he is having severe difficulties. It is often the case that autistic people can function one way in one environment but not in another. Could it be that he does appear to be higher-functioning at school than you know him to be elsewhere? This wouldn't mean that he is capable of functioning at that level all the time and is just "faking it" at home (as much as a kid that young could fake anything), but just that different environments, and even different conditions within the same environment, can cause us to act different ways, and each of those ways is 100% legitimately us.

    You are completely justified in wanting to make sure his needs are met. Whether that can happen in a regular preschool is something I hope you will explore but not feel tied to. You clearly want what's best for your son, and I'm sure you will find out what it is. It may take some trial and error, but you'd have that with or without autism :)

  9. That is an interesting point about the different settings. My son likes to know what "the rules" are and I could definitely see him having less problems in a formal school setting than, say, out at the playground. What really makes me wonder is that there are a handful of children at this school (the school is pretty small, so a handful would be a healthy percentage) that are quite verbal, pretty well behaved, and flourishing academically. Wylie is doing very well, but he definitely has a language delay and there are other things we are working to improve on as well. It would be interesting to know for sure if she ever suggested any of these OTHER children did not have autism. If she did, I might just dismiss what she says entirely. If she didn't, then maybe I have some things to think about concerning the role of his sensory issues on his behavior and maybe new approaches... (Shrug) knowledge is power, and all that...

    Thank you for your input! It really helped!