This is from our day at the Whitney in NYC in August, in the elevator that looks like a basket, (so you ride in a basket up & down the museum floors) by Richard Artschwager. My kiddo loved it.
This is from our day at the Whitney in NYC in August, in the elevator that looks like a basket, (so you ride in a basket up & down the museum floors) by Richard Artschwager. My kiddo loved it.

 

 

 

 

And so it is Autism.

After years of appointments and therapies and treatments, here we are. He’s nine and a half years old. How did I not know sooner? I have plenty of familiarity with Autism Spectrum Disorder. Some of my friends have kids that have autism. I thought I knew what it looked like. I really thought I knew.

But I didn’t.

I’ve only known that we didn’t know what to do for our son anymore. We’ve sought all sorts of help since he was age two. And we still felt all sorts of stuck. We kept seeking more support. We tried one behavioral intervention after another. We changed our way of life and our expectations. We simplified our life in as many ways as we could. We stocked our toolkit to the brim with tips and tricks to help our unique son navigate life. But we still faced the adversary that didn’t seem to have the right name. We were told it was severe anxiety. We were told it was ADHD. But the things that helped kids that had those adversaries weren’t helping our son. In fact, he just seemed to get more frustrated. And it wasn’t for lack of trying.

Then in late November, after one week of refusing to attend school (an ongoing battle, but the first time 5 days in a row that smacked us down), we went to our scheduled appointment with his child psychiatrist. She’s impressed us with her expertise ever since we met her over a year ago. We discussed all we’d done for our son. We still seemed to be at square one for school anxieties. Then I described some of our activities during the week since he’d been home from school. And it was one little odd story, one that didn’t stand out to me as a red flag for autism but just said to me “hmm, that’s interesting about my kid, he sure likes to dig his hands into paint and smear it around in circles with no pictures in mind, isn’t that more typical of younger kids” and that’s what finally did it. A picture actually did start to crystalize. She asked, has anyone ever talked to you about ASD (Autism Spectrum Disorder)?

I was stunned. What!?!? No… not in regards to our son.

You see, I was really afraid when my sons were babies. For some reason, I felt sure I’d have a kid with autism (I’m remembering that as I write this), but it was probably more like a fear of it than a foreshadowing of the future. Then my older son reached all those milestones, and then so did my younger son. Eye contact. Pointing and indicating things with interest. Talking to and making friends. Loving make believe. I felt I’d dodged a bullet. Having autism seemed like the scariest thing. Really. But once we seemed in the clear, I didn’t think about it for my family again, even after little by little, after age 3 and 4, his strengths and qualities slowly changed. See, I was super aware that if there was a sudden change, that I should be alarmed. But instead, like when a lobster is put into warm water and it slowly reaches a boil, I didn’t see the signs, and I didn’t shout for that kind of help. Even if we’d asked for ASD evaluation early on, I’m not sure he would have been diagnosed. His increasing struggles seemed to happen over such a long period of time. We didn’t have a name for the subtle changes that happened over the years. I felt the heat rising. Our whole family did. Our stress has been at a boiling point. But we didn’t know why.

So we got the referral for autism spectrum disorder evaluation, and yesterday we left our house around seven-thirty in the morning and we got to our appointment in San Francisco by nine (thanks to Waze we were early!). Our appointment lasted until two-thirty. They weren’t slow, it’s just that my son had that hard of a time. The doctors were so very thorough. Even though I’d already sent in a huge pack of papers from old evaluations, from school testing results to report cards and teacher evals, they still went through our life with a fine toothed comb. They also spent time with our son doing cognitive games (um, he passed with such flying colors, my son was even making up tricks to make the game more interesting to himself; they had no need to finish the games), and doing a social evaluation thing that has a name like ADOS or something. My husband and I ended up being in the room because our son was too anxious without us there. Normally parents don’t get to watch. But now that we were in this ASD center and looking at my son in the ASD light… I could see it. I mean, I had a strong feeling going into the appt that ASD was the right track. I hoped to God they’d see it too, if that’s what he had. But seeing it in action at an evaluation appointment like this is a whole other thing entirely. It was so clear. I saw the way my son didn’t respond to social connections, the way he often used long quotes from television or YouTube shows to express himself, the way he demanded literal answers. And when us parents were interviewed separately from him, all the questions of “did he ever _____” regarding a milestone, then saying “yes, well, i guess he used to do that… I guess he stopped at some point” and realizing I was replying that way over and over again.

OMG. How did I not notice?

But we’re okay. We’re okay now, and we’ll keep being okay. I have so much to learn about the world as my son sees it. I want to help him join his world to our world. I want to help him make sense of it all. I want to appreciate his point of view. To know that the way I see it, the way most or many of us see the world, that it doesn’t make sense to him, but what he sees, that’s a thing too, it’s an important thing. I want to understand him better. And trust his actual intentions instead of only seeing the resistance and frustration. I’m looking forward to learning these things. That’s all for now. My son just finished his in-home school session with the teacher that comes out to our house. I’ll write more later. This is only the beginning for us.