A Different Kind of Different

I read the introduction of "Be Different" and I'm really excited. I can't wait to give it to Owen to read...the only thing nagging at me is how to explain Asperger's syndrome vs. autism (because John Elder Robison has Asperger's and writes specifically about Asperger's.) The simplest explanation is that Asperger's is the highest functioning end of the autism spectrum.

What trips me up is that Owen seems to be at the highest functioning end of the spectrum and yet he's been diagnosed with the broadest term "autism." This is supposedly due to the fact that when he was little he displayed echolalia, the condition common among kids with ASD where they repeat what you say rather than actually coming up with their own words (this only lasted until he was maybe 3). It's considered a speech disorder and, to my best understanding, kids with Asperger's don't have speech disorders, which means Owen gets put in the autism category.

According to Wikipedia: "The amount of overlap between high-functioning autism (HFA) and Asperger syndrome is disputed. Some researchers argue that the two are distinct diagnostic entities, others argue that they are indistinguishable."

The science in this area just still isn't altogether scientific...and the process of diagnosing autism is still very subjective. It's the combination of observation (usually by a doctor who has only known the child for a short time) and information provided by the parents. I can tell you that I did not enjoy the pressure of trying to accurately remember every milestone he did or did not reach from birth to age 3...especially considering I had twins.

Does it really matter whether Owen technically has autism or Asperger's? In the grand scheme of things, probably not - I'm well aware that the label has nothing to do with who he is as a person. But it matters to me in terms of helping him understand what exactly is so different about is brain. And, honestly, telling people your kid has Asperger's tends to be different than telling them he has autism (I've done both) - people tend to associate Asperger's with socially awkward geniuses, which is far less scary to the general public than "autism" which, unfortunately, a lot of people still don't understand.

I can't really blame people for being confused about autism since the spectrum is so broad. There's still that old picture of the child who can't speak and bangs his head against the wall or has violent outburts - and this is reality for some kids at the far end of the spectrum - but there are a million variations in between that picture and, say, Albert Einstein (whom many now think had Asperger's). There are all kinds of developmental delays, communication challenges and, most commonly, social issues that affect people with ASD.

There's no blanket approach to kids with autism because every single one is going to have his or her own quirks, issues, and gifts. Unfortunately, our world likes blanket approaches. Our public school system is built on a blanket approach to education. And corporate America is still pretty much built on a blanket approach to success. But with 1 in every 110 people in America now diagnosed with some form of autism, we're going to have to find another way.

Sorry, I went off on a tangent there. We were talking about Owen. My sweet, brilliant, funny little Owen. Whose traits I identify much more closely with Asperger's than classic autism...I don't know if there's a good solution to that dilemma. I'm guessing that as he gets older, it will become clearer and he'll be able to decide for himself what he wants to tell people. In the meantime, I can just keep being honest with him.

Panic at the nerd camp

The boys started science nerd camp today! To see all these little brainiacs arrive, carrying armloads of broken electronics, which they had lovingly stockpiled over the past year so that they would have more parts from which to realize the inventions of their little imaginations, filled my heart with joy. 

Plus, I knew my socially awkward children wouldn't have to worry about bullies. 

But, as with every new camp or class or lesson, came the dreaded question of "Do I tell them or not tell them?" about Owen's diagnosis. I've mentioned this question before, but it still remains an area of uncertainty for me. Take today...

We arrived at said nerd camp and met the boys' group leader, a maybe 18-year-old named Eddie. In this case, I'd already disclosed Owen's diagnosis on the many forms we were required to fill out in order to register him for camp, so I said to Eddie, "Maybe you already know this, but Owen has high-functioning autism." Honestly, I figured that in a science camp for gifted and talented kids, autism (or at least Asperger's) would be a familiar concept. 

The look of panic on Eddie's face suggested otherwise. Shit, I thought. Shouldn't have said anything. 

"He'll be fine," I continued. "All it means is that he gets spacey and might need some extra reminders - especially during lunch...I don't want him to run out of time and not eat." (This actually happened at a different camp last summer.) 

The color seemed to be draining out of Eddie's face. "He'll be fine," I repeated. "If he's not fine, you can call me," I offered, trying to make him feel better.

Well, apparently as I kissed the boys goodbye, Eddie had time to gather his thoughts, because on my way out, he came up to say, "I'll make sure he eats." Ok, good. Maybe next time I will just say he gets distracted during meal time and keep the autism out of it. 

It's not that I don't want people to know or that I'm trying to "pass him off" as typical, it's that I don't want people to freak out. Nothing about Owen requires any freaking out. 

And so I'm still left unsure about whether it's really worth it to tell people. Could a scenario arise in which knowing Owen has autism would help a person who clearly knows nothing about autism, help Owen? Or am I just setting him up to be treated differently unnecessarily? 

I don't know the answer to those questions. What I do know that both boys had a fabulous time at camp. I did, however, find a barely-eaten sandwich in the lunch box this afternoon...only this sandwich belonged to Aidan. 

Insight and Understanding

There have been times on this autism journey with Owen that I have wondered if we might not all have been better off had he never been diagnosed. He is generally so high functioning that his autistic traits usually appear more as quirks than anything and sometimes I wonder if this label that's he's been saddled with will do more harm than good. 

But then I read John Elder Robison's* blog today about the value of neuro-psychological testing and it reminded me that I am grateful to have a better understanding of my son -- and that he will grow up with a better understanding of himself -- and that it's not the label I hate, it's just the lack of understanding and support that goes with it. 

Obviously, that's changing and I hope that it will continue to change as Owen gets older. And I hope he can find inspiration in people like Mr. Robison so he can go forward knowing that being different can be amazing. 

*If you haven't yet read his book, "Look Me In the Eye: My Life with Asperger's," run out and buy it now. It not only provides insight into Asperger's, but it's just a really good story on its own. The guy toured with KISS!

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.

Haven't I Mentioned...?

An interesting thing happened as a result of my email and blog calling for donations to Team Owen on Friday. We've not only raised more than $1500 (and counting!), but several people have contacted me to say they didn't know about Owen's diagnosis.

It’s a little weird that people I consider friends didn’t know, but, of course, I am entirely to blame…

When he was first diagnosed nearly two years ago, I wasn’t exactly shouting it from the rooftops. In fact, I was in disbelief. I was scared and unsure and really, really sad. So I didn’t tell anyone – save for a handful of people from whom I couldn’t hide my breakdown.

Then, after doing the research and reminding myself he was still the same little boy, label or no label, I still didn’t tell people, only this time it was a test of sorts…I think I wanted to pass him off as “normal” thinking that if nobody noticed, then he didn’t really have it, or some such nonsense. I know it wasn’t the healthiest of approaches, but my heart was in the right place; I just didn’t want anyone to place any limitations on him.

Slowly but surely, I accepted the diagnosis and I did start telling people, but it wasn’t like, “Hey! Owen has autism, how are you?” If an opportunity didn’t present itself, I didn’t make a point of bringing it up. I just didn’t want people feeling sorry for me or for him.

Which brings us to the present, where apparently an opportunity still had not presented itself with a few of my friends and acquaintances. So I am all the more thankful for World Autism Awareness Day and Autism Speaks, because they gave me the opportunity to, essentially, shout it from the rooftops: MY SON HAS AUTISM!

And while it’s not what I would have wanted for him, it’s part of who he is. And I want to know why. And I want to know how to help him learn and live to the best of his abilities. And when he is old enough, I want to give him an explanation for his quirks. And I want it to be better than some vague disorder that people don’t really understand…I want him to have answers. He deserves that. Thank you for helping make that possible.