Wednesday, July 1, 2015

Something To Say

Long time, no blog. Yeah, yeah. I know. I'm working on it.

I'll gladly give a little update on everything going on around here, but it has to wait. I have something to say here, and oddly enough, it's about...well...having something to say.

Specifically, it's about autism. And the indisputable fact that it IS truly a spectrum disorder.  Think about what that means for a minute--think about the color wheel. Another "spectrum", if you will.  How many distinct colors are there? Practically an infinite number there, many similar, but with slightly different tints, nuances.  Autism is the same--and more specifically, people on the spectrum are the same.  Just like ALL humans in fact, no two spectrum individuals are the same.  That means that we walk around on this earth, surrounded by people with autism, and sometimes we can spot them clearly because they "fit" the stereotype, and sometimes we can't because the characteristics that put them on the spectrum aren't as noticeable. And yet...just because these people don't stand out--because you can't see anything that you characterize as "autistic behavior" as you pass them on the street--doesn't make them any less autistic or less present on the spectrum.

Anderson is one of those people who doesn't always present as being a kid on the spectrum.  If you were to pass us on the street, chances are you might see a typical mother/child interaction.  He might ask what seems like a typical question, I may answer. He doesn't flap his hands; he makes eye contact. He doesn't run, or vocalize. He doesn't often melt down and he generally follows directions without too many requests. He can appear to be neurotypical.

What you may not see if you pass us on the street is what characterizes the vast majority of our interactions. Repetitive speech. Echolalia. Anderson asking the same questions over, and over, and over. Anderson asking questions that he wants you to answer in a very specific way, and Anderson asking you that same question over and over UNTIL you respond the way he needs. Anderson talking using all of the words that he has heard and knows but not having a clue about their definitions and context, meaning that what he says can be complete and utter jibberish. No, the words aren't "jargon", meaning not made-up words, but if you listen to his sentences, they aren't right! There's often no subject/verb agreement.

Does the fact that he can walk down the street, engage in appropriate conversation, and follow directions for the amount of time it takes to pass you, the average passerby, make him any less autistic? NO. Does that mean that our lives are easier than those of people with "classical autism"? Probably in some ways, yes. I do believe that.  But does that mean that our lives are a piece of cake? Absolutely not. To those people who believe that it is, I invite you to live with us for 24 hours. Check out the accommodations that we make to function. Try interpreting what he's really asking of you when the words come out all wrong. And God forbid he get upset about something. Figuring out what upset him will be, let's just say, a challenge.

I'm not complaining here. I absolutely love him--just as he is--with all of my heart. Many of the things that make him autistic are the things that I love most about him. His quirks are endearing and part of what makes him Anderson.  Yes, it can be difficult, almost impossible on the worst days, and we DO have bad days. But I wouldn't trade it for anything in the world. Anderson's autism has made me a more understanding parent and a better educator. I'm not complaining.

What I AM doing is begging you to please...PLEASE stop saying that you question whether he's on the spectrum. Please stop telling me things like "all boys have a hard time communicating", or "he's just a little quirky", or "well if that makes him autistic then my kid is on the spectrum, too". Just stop. Go and read the DSM-V.  Being diagnosed as autistic isn't easy and they don't throw the label around willy-nilly, despite what some people may believe. The disorder is a spectrum but the criteria are distinct. Trust me on this. Just because Anderson has words--and trust me when I say he has a lot of them and he isn't afraid to use them--doesn't mean he's any less autistic.

It is hurtful to me, as his mother, to hear you tell me that you doubt his diagnosis. It makes me feel that you think I have unfairly had a label placed on him, a label that you obviously feel is negative (which is a separate issue for another time).  It makes me feel that you're minimizing his challenges, that you believe I'm over-exaggerating the struggles that we have both at home and with him at school. It makes me feel like you believe that the entire context of my family's life is wrong.

I know I joke a lot about Anderson. He's a seriously funny kid with an amazing sense of humor.  Our family tends to deal with stressful situations with humor--you either laugh or cry, and we most often choose laughter as our way to deal with unpleasantries.  But just because we laugh doesn't mean that it isn't hard, or that we don't have strong emotions about all that he has to go through, both now and in the future.

Please. Before you tell me that "he doesn't look like he's autistic", or that your "kid must be autistic, too, if Anderson is", please stop and think. If you have questions about what makes Anderson a spectrum kid, by all means, ask! I'm happy to share! But please, don't say it. Just don't.

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