The other day, Erin and I were talking about Henry, and marveling at how far he’s come since we got the autism diagnosis last year. I’ve written about it here a few times, but it’s absolutely worth noting how much hard work and progress Henry has been making.
He has a great relationship with his therapists, and we see him getting more flexible with change and more open to trying new things. He absolutely still likes structure, and loves going by the schedule and setting timers, but this is good. These are ways he feel more comfortable with things around him and ways we can better communicate with him.
Another thing we’ve been working with him on is trying new foods, which is often a challenge for any kid, and can be especially daunting for kids on the spectrum. Erin had the idea a few weeks ago of having Amelia pick out a new fruit to try each week, and its been a huge hit with both of them. What has really struck us is the fact that Henry jumps right in and tries these new things every time. Six months ago, even attempting that could have led to an explosion of epic proportion. Now he doesn’t always like it, but that’s OK. Just trying is a big part of the battle.
He’s also talking even more and, we feel, communicating his thoughts and feelings more and more all the time. I notice his word choice and phrasing getting more sophisticated.
Yes, there absolutely are still challenges. He still gets revved up and needs sensory input, so he’ll run around, jump and fling himself into walls sometimes. He does still have meltdowns and emotional eruptions, but seldom as bad as they once were because now we are better at working together to come back down. In the end, the most important thing to us is that he just seems happier and more comfortable with himself, his surroundings and his emotions.
Our goal has always been for us to understand Henry better, and hopefully for him to also understand us a little better, too, creating a happy space in between. Certainly, we have learned so much already and even with a long way still to go, it helps so much to have a better grasp on the meaning behind some of things we’ve been seeing for a long time.
For example, Henry often “stims,” which is shorthand for “self-stimulating behavior.” I think we all have tendencies in this realm, but sometimes autistic people are known to use repetitive motions like waving their hands or rocking to help regulate or self-soothe.
For Henry, stimming is very often humming. While playing, watching TV, or doing most anything, he’ll be doing it while humming various upbeat little ditties. They can be catchy. Other times, stimming for Henry will be running dialogue from his favorite cartoons.
We learned early on that all too often in the past, stimming was frowned upon and discouraged in those with autism because it seemed odd or different to people. We understand now that it can be an important regulator, so if helps Henry to hum, then hum away. If we’re working or on a call, sometimes we’ll have to ask him if he can hum in his sensory tent or maybe try something else to soothe, but we never want him to feel like he can’t or shouldn’t stim. It’s just another part of the complex tapestry that is our beautiful boy.
And while there is obviously a lot to say about how far Henry has come in the last year, I’m also struck by how much my own thinking on all of this has changed over time. For years, well before Henry got the diagnosis, we had a feeling he might be on the spectrum, but had a really hard time facing that possibility. We worried about a label and were fearful of the limits and difficulties it would put on our son. I remember when we went through the assessment, I started to have a feeling that he would be diagnosed, but I still hoped and hoped that he wouldn’t.
After he got the diagnosis, I remember talking to a couple of doctors who talked about kids they saw test on the spectrum, and later test out of it. Early in this process, I thought a lot about that. “Maybe Henry will be one of those kids!” I thought.
Something made me think of that in a conversation the other day, and that’s when I realized how far my thinking had come. Because now I honestly don’t think it matters what any test says, and “testing out of the spectrum” is not remotely on my my mind for Henry. What matters isn’t a score or diagnosis. What matters is our son being and feeling his best self.
Henry is who he is, and autism is part of that. The stimming, desire for structure and need for sensory input is just as much a part of him as his sly sense of humor, his infectious laugh, his enormous heart, incredible memory and his amazing sense of rhythm. The more time goes on, the more I see how all these things are interrelated and how they all contribute to his strength.
I was so afraid of the label, but now that I have a better understanding of what ASD is, I realize it isn’t anything to be afraid of. Like any of us, Henry will have to balance his own challenges and advantages in life, and just like we do with Amelia, we are doing our best to give him as many tools as we can to put his best foot forward. And from what we’ve seen already, I know he will. He makes us proud every day.
