Quiet

I've written about this before, recently even. But it's worth repeating.

There's a different C that most people don't see, and this is the C who comes out when it's quiet. I mean, really quiet. And not just when it's quiet, but when we're quiet.

Instead of unresponsiveness, C answers. Instead of silly talk, he is frank and funny, and sometimes poetic. For example, just after I took the photo above I asked him what he was doing (he was so intent and still, very unusual for him), and he said, "I'm listening to the quiet."

Quiet. It's hard to come by. But it's worth it when you can find it.

Whose journey is this?

I started writing this blog to give something back.

When C was first diagnosed with autism, I wanted to learn as much as I could. A big part of my research included reading ASD parent blogs, some of which were so helpful that, after a while, I felt I might like to share what I was learning, too.

Over time, however, I was reading fewer parent blogs and more blogs written by people with autism. As my son is still young, hearing from older people with autism was revelatory and inspiring.

And so lately I've been wondering, whose journey is this, anyway?

As someone who now follows autism closely — including the political, social, scientific, financial, and philosophical perspectives — I feel the focus is still mostly on us parents and what we go through, and not enough on the people who actually have autism.

Or, as Tommy Christopher recently put it, "Autism is not about you, Jenny McCarthy, Joe Scarborough, Autism Speaks, autism parents, and shitty reporters. It’s not about how hard your lives are, or what saints you are for not murdering them, or what bogus science you’re spreading. It is about the children with autism, and the adults that they become. If you love someone with autism, if you care at all about them, you need to fix yourselves. A good place to start would be to listen to them."

I'll continue to share my experiences as a parent, some of which are difficult. But as I write about this journey, I want to be careful to make it clear that this is not a tragedy, and we are not victims. Yes, the system is broken. Yes, there are challenges, just as there are challenges in any life. Yes, I have fears and frustrations.

But mostly I'm happy because my son is awesome, and on a daily basis I consider myself damn lucky to be his dad.

...

I started writing this blog to give something back.

I wanted to help parents just as I'd been helped by others. That hasn't changed. But what I've come to realize, and what I hope to share with others, is the perspective that what matters most isn't us parents, but our children...our children who will become teenagers and then adults.

This is their journey, and we're just along for the ride.

Standing Up

I read and answer questions in various autism-related communities. Recently, someone in one of those communities asked me to respond to this question:

What are the goals of the autism acceptance movement?

I don't consider myself part of any movement, and I don't have autism myself, but I thought I had something to say on the issue. Here's how I responded:

"I want help for my son, but I do not want to cure him. I want him to have the same opportunities as his neurotypical twin, but I also respect and appreciate the differences between the two.

"I know some parents of children on the spectrum want to 'cure' or 'recover' their children, but I also know many parents who have no interest in this approach. Like me, they just want acceptance and acknowledgement. They want communities and systems that are supportive of them and their children.

"Therefore, my part in any kind of movement is to stand up as a parent who accepts his son's autism, even when it's challenging, and to state my belief that autism is a distinct neurological condition, not a manmade disease, infection, or form of toxic damage.

"I want to share with others what I believe: that autism has always been with us, and that any increase in numbers is due to a broadening of definitions, greater awareness, and improved early intervention services."

Assume Awareness

Today is World Autism Awareness Day, so here’s what I’ve learned about awareness over the past couple of years: my son with autism is very aware.

He’s aware of me, he’s aware of you. He’s aware of a lot more than he lets on.

He might appear distracted, aloof, in his own world; he might not answer when spoken to; he might chatter on seemingly oblivious to whether we’re listening or not.

But rest assured: he's taking it in, this frenetic, loud world. If you get to know him, you'll see the signs, hear the words that demonstrate this awareness.

And that's another part of it: will you take his apparent lack of awareness as a sign that he doesn't want to connect? Or will you take a moment to say hello, acknowledge his existence, even if it doesn't come with an immediate payoff? Because, trust me: he's aware of your efforts (and so are we).

So, for this Autism Awareness Day, I'd like to suggest we all assume awareness.

Respecting a Birthday Wish

This year, unlike years past, we asked our twins to help create a guest list for their birthday party. M, our neurotypical guy, had a ready list of friends and classmates. In fact, he had more than we could reasonably accommodate.

C’s list, however, was decidedly shorter: “No one.” C is rarely so declarative, so we tried again a few more times, only to get the same response: “No one.”

We would ask around the question. “Do you have friends you like?” “Yes.” “Like who?” Names were offered. “Don't you want to invite them to your party?” “I don't.”

We know that C likes other children, even though he has yet to find meaningful ways to interact with them. But we also know he’s been having a lot of anxiety in group situations lately, retreating ever more into himself as the group grows in size.

We decided to respect his wish; we felt it was important for him to feel he was heard and his request honored. His birthday, after all, is his special day, not ours.

So we had a birthday party for the twins, and we invited friends — M’s friends. C, for his part, had a great time doing what he likes to do: running, laughing, jumping, rolling around. No pressure to socialize, no need to be there for someone else.

I hope that one day C will find it easier — and more pleasurable — to have friends. Until then, he will know that his wishes and needs matter, at least to us.