A Heavy Word

While I haven’t updated this blog since spring break, it has certainly not been for a lack of stuff going on. On top of all of our usual outings and activities, and the usual end-of-school year busy-ness, we’ve had somewhat of a development (for lack of a better word) with Zoey.

The University of Washington recruits families in the Seattle area to enroll their children in research projects being done by graduate and doctoral students at the University. All of our children have been enrolled since birth and all have participated in at least one study. They’re fun for the kids, usually disguised as play, and the kids get small toy prizes or t-shirts as rewards. I became aware of a study looking for babies Alden’s age who have an older sibling with Autism. As you may or may not know, having a child with Autism increases the chances that any siblings of the child will also develop Autism (as they are likely to share the genes involved with Autism). On a whim, I called up the study coordinator and told her about Zoey and Alden. I informed her that Zoey had a diagnosis of Sensory Processing Disorder, and had never been diagnosed or ruled out for Autism. We knew it wasn’t off the table, but also weren’t sure it was very likely. After all, Zoey is highly verbal and doesn’t exhibit many of the traits one usually considers “Autistic.”

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The study coordinator said that they would evaluate Zoey (for free!) to see if she has Autism. If she did, then we would qualify for the study, which would actually be for Alden. The study is looking at ways to facilitate early social and communication skills in infants at higher risk for Autism (such as those with an older sibling with Autism) who are too young to yet be diagnosed themselves. If the child does end up diagnosed with Autism later on, then they have already gotten a jump start on developing crucial skills.

Zach and I decided that a free evaluation – with no waiting months for an appointment, and done by the highly trained and knowledgeable people at UW – sounded great. We expected this would finally rule Zoey out for Autism and we could take that little worry and throw it out. In the weeks leading up to Zoey’s evaluation, however, I started to research Autism in girls and women after a friend suggested I do so.

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Wow. Have you ever looked into this? It’s relatively new research, most of it having come out in just the past few years, and it’s pretty shocking. It turns out that the common portrayal of Autism – what you usually see on TV or in movies – is the male version. It looks very, very different in females. I’ll post a couple of links at the end of this article, rather than go into all the details here (which would require another entire post). The thing was, the more I read about Autism in women – specifically Asperger’s – the more I thought, “That is exactly Zoey! That’s her to a T!”

It was pretty shocking, and I suddenly began questioning whether this evaluation was really going to rule it out for Zoey. Then I would question that, thinking “Even if she does have Autism, it would have to be so mild they couldn’t possibly see it in just a two hour evaluation.” My thoughts were a mess for weeks, honestly, constantly worrying and overthinking the whole thing.

The day of the evaluation came and Zoey enjoyed “playing” with the researchers although she was clearly quite worn out by the end of it. Afterward, we had to wait a couple weeks before we heard the results. Finally, one of the people conducting the evaluation called me with the results. Right off the bat, he said, “First of all, we want to tell you that Zoey definitely meets the criteria. She has Autism.”

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I was a bit stunned, and had to take a moment to process the news. I mean, we always knew it was a possibility, and I think deep inside I knew it was the case all along, but still. Autism. It’s a pretty heavy word.

He went on to tell me, in great detail, all the things that contributed to the diagnosis. Zoey’s overly-formal, somewhat stilted, and at times repetitive speech patterns, the “up talk” sound to her voice, her lack of emotional insight, her inability to carry on a conversation past a (very limited) point. All the examples were relatively mild, yet the sheer number of them overwhelmingly indicated: Autism. Specifically, mild Autism. He said that if it was ten years ago they would have called it Asperger’s, but it’s now all lumped onto the Autism Spectrum. Asperger’s. Just exactly as I had thought when I read about it.

Autism is indeed a very heavy word. Here’s the thing, though: it doesn’t change anything about Zoey to have one more word attached to her. She’s still the same kid as she was the day before we got the diagnosis. All those amazing quirks that I love so much about her just have a name now. And we have a diagnosis if she ends up needing a bit more help at school in the future. And a prescription for Applied Behavioral Analysis therapy if we think she could benefit from it (which the professionals doing her evaluation really thought she could). So, in a way, this word opens more doors for Zoey, rather than shutting any. And she is still our smart, funny, quirky, brave, amazing girl. I could not love her more, just exactly the way she is, and I would not change one single thing about her.

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4 thoughts on “A Heavy Word

  1. I’m really glad you shared about this development in you family. I hadn’t quite realized how significantly different autism looks in girls v. boys, but in reading your post it all made sense. I’ve been out of teaching for quite a few years but this information will help me in the work I currently do with families and children. And I have to say it makes me angry that in this instance, as in so many other situations in our culture, the information out there tends to be male-centered. Male privilege strikes again.

  2. You are amazing parents and I think that having that heavy word is a huge step. I have a daughter who was diagnosed at first with bipolar disorder, and then they labeled it more ADHD, but I am still not convinced fully. Thank you for posting this. Understanding the word you are deal with is so helpful.

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