I was wearing my autism awareness pin on my jacket the other day while I was in Andersonville, which is a particularly gay neighborhood.  In case you haven’t seen the autism ribbon, it looks like this:

So after I order my new favorite beverage — a cafe au lait — the guy behind the counter goes, “What does that pin stand for… everything?” It does kind of look like the gay pride colors, doesn’t it? They should make an everything pin — gay, straight, trans, you name it — all puzzle pieces that fit together to make society.

Aside and related, I like this bumper sticker:

Speaking of autism, I took E-Niner to a McDonald’s playland for a playdate with another friend over the weekend. The mom and I were talking about IEPs — she’s in the midst of doing hers for her son — and our conversation moved to autism. I was talking about E-Niner like he has PDD-NOS, because he does (learning to accept, learning to accept, learning to accept). “Wait a second,” she said. “Doesn’t E-Niner’s IEP classify him as Emotionally Disturbed? He’s not on the spectrum is he?”

And then I looked at him: interacting with the other kids, making eye contact with me like nobody’s business (“Mommy!!!! Look at meeeee!!! I’m back from the tunnel!!! You found me!!!!!”), smiling away and having the time of his life. I looked at her son, who is also on the spectrum. He wasn’t making eye contact, didn’t acknowledge me or E-Niner, doesn’t have too many words, walks on tip toes a lot of the time, and darted out of the play area every five minutes. I kind of felt like a fraud.

Have I mentioned I hate this PDD-NOS diagnosis? In comparison to her son, E-Niner’s “autistic symptoms” are pretty light. So light that next to a boy who has mild symptoms, E-Niner looks “normal.”

She didn’t mean anything by the comment — this mother and I are very good friends and have shared a lot about what it’s like raising kids like ours — but my own emotions crept up. I felt defensive:

“Did you hear how he said that I found him when he was actually the one looking for me? That’s one of his delays — he doesn’t always get who is who in a situation. And see how he’s being super-repetitive right now? Climbing up the ladder, running across the tube, going down the slide, doing the Mommy-you-found-me bit — it’s a very long, repetitive loop, but it is repetitive. He’s been doing the same thing for the past half hour.” Then I went into some long winded explanation about how he knows feelings, but doesn’t know what to do with them.

I wasn’t sure she bought what I said. Especially when you look at the two kids next to each other. Truthfully, after listening to myself, I had a hard time believing me. It was as though I was regurgitating what I’ve been told; the words weren’t coming from my gut. Oh, well. It is what it is.

That’s the point of the ribbon, I suppose, that autism in one child may look very different than autism in another child. Everything — mild, severe, high-functioning and low — gets a nod in that one, colorful symbol.

E-Niner has PDD-NOS, a disorder on the autism spectrum. I’ve always dismissed this particular diagnosis. He meets the criteria because he isn’t great at eye contact, does lots of repetitive behaviors and weird vocalizations.

I’ve always attributed those characteristics to anxiety or sensory processing disorder (also on the autism spectrum), but have not really wanted to fully accept PDD-NOS as a diagnosis. Plus, PDD-NOS stands for Pervasive Developmental Delay – Not Otherwise Specified. Considering this kid’s cognitive abilities are above average, I have trouble that his delays are pervasive.

Then I took the test that wrongshoes linked to on her blog.

E-Niner pulled up a high score, indicating that he has severe PDD-NOS. And here I was, dismissing it this whole time. The result showed, boldly, “Severe.”

That PDD-NOS pill I’ve tried so hard not to swallow? It’s materialized as a big lump in my throat, and I’m still trying to push it down.

Everything about E-Niner is severe. Severe ADHD, severe anxiety, even psychosis rolls right off my tongue. Why, after all we’ve been through with him, would severe PDD-NOS bother me?

In the early days of learning about E-Niner’s issues, we always patted ourselves on the back. At least he didn’t have autism or some form of it. All those parents raising all those kids with Autism — that’s the worst. You do so much work for the benefit of your child, and they can’t even show that they love you.

Isn’t love the one thing that mothers — that parents — crave?

To hear your child say I love you sounds like a song. To feel your child wrap his arms tightly around you, to feel him twirl your hair, to feel his tiny hands hold your face as he stares into your eyes (yes, I’m totally thinking of T783 right now!) — this is the stuff that makes the rough moments and all the work that goes into parenting worth it. It’s the “drug” that gives you that parent high.

E-Niner doesn’t hug me. He won’t let me hug him. He will let me kiss him — either when he’s fully medicated during the day or in the evening right before he goes to bed. But I have to kiss him on the forehead, it has to be quick, and he has to wipe it off. He’s never kissed me proactively, and when you’re forcing someone to purse your lips, it’s not the same.

E-Niner doesn’t sit on my lap. I recall a mom-and-tot music class we attended when he was two. The kids had to sit on their parents legs as we bounced them like a “horsey.” He didn’t want to do it. I looked around the room, and all the other kids were doing it. Not E-Niner. He had run away from me, off to explore other parts of the room. I dismissed it then — and even now — that he’s “all boy.” Boys generally aren’t that affectionate.

Okay, Okay, I know. Can we say denial?

I’ve spent a lot of time in denial about the whole PDD idea for many years, since his neurologist first introduced the idea back when E-Niner was two and a half. I may still be fully in denial right now.

Every time I get an Autism Speaks e-mail, I hit delete. “Doesn’t apply to me!” Yet. Yet I remain on the list. Yet, I ordered their welcome package and thought it was extraordinarily useful. Yet, every time I see a video on that site or I read messages on their discussion forum, I can totally relate.

But my kid doesn’t have Autism or any form of it. My kid? Nope. He’s got other things. Not that. Not that really bad disorder that makes it difficult to show that he loves me. He doesn’t have that, because that would suck.

But even if he does…even if I can get this pill down…in spite of whether he has PDD-NOS…and finally getting to the point of this post, guess what happened yesterday? Twice — twice — he sat in my lap for a long time (at least a minute and once, five)!

It felt so good, I had forgotten what I’ve been missing. He allowed me to cradle his hot, sad body in my arms. He allowed me to hold him until he felt better. He came to me for comfort! In the history of E-Niner, I can’t tell you the last time that has happened. It was heaven.