Distracted Genius

So, April is Autism Awareness Month. I realize that we still have 8 days left of March, but I didn't want it to sneak up on you...My goal this April is to include a fact or story or educational tidbit about autism in every blog post for the month. That doesn't mean that I'll only blog about autism next month, just that all my blogs will contain a note in recognition of Autism Awareness Month. 

Feel like joining me? The more people we can educate, the better the world will be for my little Owen and everyone living with autism. 

Speaking of Owen, today was the big 3-Year IEP Reevaluation Meeting. 

First of all, I just want to say how much it annoys me that these meetings are always so f*ing disorganized. It's not like this is a party planning committee or a casual get-together with friends. Note to public school system: When I walk into a room of supposed "experts" to hear what you have to say about my son and his educational future, I expect you to have your shit together. This includes actually reading what it is that you contributed to the report so that you can speak about it intelligently rather than reading it verbatim (grammatical errors and all) off the sheet of paper I have in front me. 

Alright, now that I've gotten that off my chest, I should say that overall the meeting was good. Or, at least, the information given at the meeting was good. He aced the Wechsler Preschool and Primary Scales of Intelligence test (phonetically known as the "wipsy" by educators). As we've known for years, the kid is a genius, only now he's got a documented IQ score of 125 to prove it. (Alright, if you want to get technical, a 125 is actually just the "very superior intelligence" level, not "genius," but whatever.) The psychologist who administered the test added that she thinks his score might really be higher, but by the end he was tired and distracted, so he didn't score as high on the final sections. 

The gist of the meeting was the usual: He is brilliant and he is socially awkward and has trouble focusing. How will all of this play out as he gets older? That remains to be seen. He will continue to get social skills support. We will continue to work with him on when he has to exert every ounce of his energy on focusing and when it's okay to relax and be silly (or stare off into space). We will try to help him learn to interpret facial expressions so as to avoid some of the embarrassing and awkward situations that such misunderstandings can cause. We will just keep doing everything we can and maybe the school's well-meaning, yet sorely underfunded and understaffed efforts will help a little too. 

All I can hope is that no matter how hard it becomes to navigate the social structures and classroom dynamics as he gets older, he can hold onto the knowledge that he is exceptional and always will be. And that we love him just the way he is. 

For more information on autism or to find out more about Autism Awareness Month, visit the Autism Speaks website.

The Verdict

I meant to post a follow-up yesterday after Owen's appointment, but I guess I was just processing...the verdict is that he still fits the criteria for autism, not Asperger's.

The way the psychologists explained it was that children with Asperger's have typical verbal development, but display the social impairments associated with ASD. I had never heard such a simple description before. I don't know if this is a more advanced understanding than they had two years ago or what, but had we heard that explanation two years ago, we would have known that he didn't have Asperger's because even though he is very verbal, his verbal development isn't "typical" in that he did demonstrate echolalia a lot when he was younger and he still repeats a lot of phrases he hears in movies, etc...although he doesn't use those phrases to communicate, he just likes repeating them.

I don't know...it had been awhile since we'd had to go through this kind of evaluation, so I had forgotten how much of it really depends on your ability, as parents, to answers a barrage of questions about your child accurately. If your hands were full and you needed to open the door and you dropped something, would he step in to help without prompting? Well, I can't picture that happening since I would have been asking him to open the door as I approached it with my hands full...maybe?Does he use the word "between?" I had to think about that one for awhile...I don't recall any monumental occasion in which he used to word "between," but that doesn't rule out the possibility that he's used it...

I understand that these tests and questionnaires were developed a certain way for a reason, but it seems impossible to me that my ability to accurately recall every tiny detail of his speech and mannerisms (especially given that I have twins) has such a large influence on the diagnosis. There just seems to be a huge margin for error there.

Of course it wasn't just us talking, they played with Owen, too. They got to see firsthand who he is and how he acts...granted, it was only for an hour, but he was in a good mood, so I think it was a pretty accurate representation.

Anyway, I don't mean to sound upset about it. The gist is that he's doing great. He's made great progress. He's a sweet, charming and cooperative little boy. And yes, he has autism. It was a very long-awaited and expensive confirmation of what we already knew. 

But on the bright side, the doctors at Fraser were really great. I wish I could consult with them on a more regular basis. They not only understand autism, but they were great at picking up on all of Owen's strengths and really speaking as advocates for him rather than focusing on what he needs to work on. So overall, not a waste of time, but not as big of a deal as I had unintentionally built it up to be in my mind.

And then we all went and had cupcakes. The perfect ending to all appointments.

Btw, today is the husband's birthday. Happy birthday, honey! 

Nothing and Everything

After seven months on the waiting list, today is the day Owen will get his ASD re-evaluation. When he was diagnosed 2 years ago, the doctors recommended we come back in 18 months-2 years based on the possibility that he would "outgrow his diagnosis."

It's a strange concept, to simply outgrow a diagnosis...doesn't that mean it was the wrong diagnosis to begin with? But I have heard of it happening -- in fact, it just happened to one of the boys' best friends. Much to his mother's surprise, he no longer qualifies for any special ed services through the school district and seems to be developing into a fairly typical boy. His mother, of course, isn't sure whether to be happy or scared and who can blame her? It's all just someone's best guess, really. One day you have autism and the next day you don't? There's so little scientific evidence of anything that we, as parents, are left to rely on our own gut feelings and the opinions of "experts."

I'm not going into this evaluation today hoping that they'll tell me Owen doesn't have autism after all. I can see clearly that he is on the autism spectrum. But what I've never been clear on is where that line between classic "autism" (which is what he is currently diagnosed with) and Asperger's Syndrome is drawn. Based on what I've learned about Asperger's, that seems like the most fitting diagnosis for Owen. He is very verbal. He is very smart. And he's very high-functioning. So I guess I'm looking for that expert opinion to either tell me that yes, he does have Asperger's or to help me understand the difference.

Does it matter? Well, only from the perspective that I'd like him to be diagnosed accurately. It doesn't change who he is. It doesn't change who he will become. But, unfortunately, there is a lot of weight put on labels and I think it's only fair that his label be correct. I will admit that I think he would have an easier time in school with an Asperger's diagnosis. Right or wrong, there seems to be an understanding that Aspies are eccentric but also very smart and should therefore be given a little extra leeway. My experience with autism within the neurotypical education system is that they are quick to place limits on these kids...to only expect so much.

I don't think I ever blogged about this, but in our last IEP meeting, Owen's preschool teacher proposed recommending that in kindergarten, Owen be allowed to complete shorter assignments than the other kids. Her reasoning was that he works slowly and will get frustrated if he is behind all the other kids. Or, we suggested, perhaps he will learn to work more quickly. Plus, anyone that thinks he wouldn't notice that he wasn't doing the same work as the rest of the class doesn't know Owen very well. We refused to sign until that "recommended adaptation" was removed.

Anyway, I'm trying to be very clear with myself on what my expectations are for this evaluation today. The last time, I was hoping the doctors would tell me the school district was wrong, that he didn't have autism, that he was clearly just a genius. Obviously that's not what happened. Having learned so much since then, I want to go in with realistic expectations today.

I'm trying not to get my hopes up because hope seems like to wrong emotion...I want to believe that it doesn't matter what they say...it doesn't change who he is. But I can't help feeling like his life might just be a tiny bit easier with the label of Asperger's. And I think any parent would like to hear a doctor say that their child's disorder isn't as severe as previously thought.

So I guess I'm trying to go in with no expectations. Because when it comes to autism, no one can predict the future. And Owen doesn't want to be called anything other than "Owen" anyway.