On autism

It's been quite awhile since I've posted anything about autism and/or about how Kael has been doing lately.  Several things have come up lately that prompted me to write this post.

First of all I spent some time talking with a friend about her son who has been diagnosed with the same diagnosis as Kael.  I don't know her son well at all, but just having someone to talk with about all the IEP stuff, school decisions and things like that was really nice.  Her son is younger than Kael and I can so empathize with all the things she's going through as I have been there before!

Secondly, I have a friend and someone close to her has been displaying a lot of the same behaviors Kael did at that age. She hears me talk about Kael often and is trying hard not to overstep her boundaries as how to help this kid.  Having been called outspoken a time or two in my life, it's all I can do but to stay on the outside and offer suggestions when really what I want to do is butt in and say, "Get him some help! Get him diagnosed! If you think there's anything going on- there are so many resources and people out there who can help him!"

Lastly, Kael has been doing really really well lately.  Perhaps that's not as noteworthy as you think.  But his mood, his interactions with kids his age- all of that has been great.  Therein lies a great problem and my main motivation for writing this.

"Don't you think he just outgrew it?"

"Don't you think his diagnosis was maybe wrong?"

"Don't you think maybe he never had 'it' in the first place?"

These questions swirl around me and my family (of course, no one actually says this to me- they just talk about it when I'm not around) and I'm completely torn about how I feel about these comments.  On one hand I can't help but think, "Wow! Kael is doing so well and has worked so hard that his diagnosis goes completely unnoticed to the average person!" And I also can't help but feel a little proud.  I push him harder than he needs to be pushed.  I expect a lot out of him because I know he has a lot to give.  I hold him to an incredibly high standard because I know he can handle it and I know he benefits from my crystal clear expectations.  Kael's unnoticed daily struggles do not go unnoticed to me because I am there day after day, by his side, pushing him forward and cheering for his successes. 


On the other hand, I do feel a little frustrated when I hear these comments are being made.  Kael no more has 'outgrown his autism' anymore than he could outgrow his red hair.  The very day we received the diagnosis the doctor said to us, "He will never outgrow this diagnosis.  Essentially there is no 'cure', but Kael will learn how to cope and many of his quirks will not be as prominent in the future as they are now."  For example, a person who has poor eyesight will wear glasses to compensate for that disability. Kael's brain is actually different than that of a neurotypical peer so he has to compensate for those differences.  His brain is wired differently.  He perceives things differently than I do because his brain is different.  That fact alone will never change. Once I realized and totally accepted this fact, my life with Kael became so much easier.  Instead of trying to make him see the world as I see it, I learned to see the world the way HE sees it.  And for an autistic kid, this world can be a difficult place to navigate.

So when people think he's "outgrown it" or think he "never had it in the first place" my first urge (as a person who thoroughly enjoys being right) is to correct them.  "You're wrong," I'd like to say.  But I don't.  I smile and respond, "Yeah, he's come a long ways because he's worked so very hard." And that's the truth.

To someone who only spends a couple hours at a time with Kael, or to someone who mostly spends time with Kael when he's eating his favorite food (pizza, Mexican food) or doing his favorite thing (wrestling, playing Wii), I can see how it would be easy to assusme Kael has no struggles different than an average 6 year old boy.  But spend a full day with him.  Spend three.  You'll start to see that he operates differently than you and I do.  You'll see a full range of emotions that he works so hard to keep in check.  You'll see his need for a schedule.  You'll see him react negatively to a last minute change of plans.  You'll see him not respond to a question you ask, but instead bring up a topic of  something that happened three years ago as if he never heard you ask a question in the first place.  But what you'll really see is a kid with a heart bigger than the sky. A kid who is dying to please.  A kid who doesn't want to fit in our society's neat little box.

I don't want Kael to be "better".  I want Kael to be Kael.  I don't want him to "outgrow it".  He is a champion because of all he has accomplished given the disadvantges he's overcome. The greatest compliment you could give (either to me, or when I'm not around ;) wouldn't be "Kael doesn't even seem autistic" but rather, "Kael seems so happy." Because ultimately, that's what matters the most.