My Autism Awareness Button

It's April, which means Autism Awareness Month. It's the month when we change our Facebook profile pictures to autism graphics, the month when we wear autism pins on our lapels. We wear puzzle piece buttons with pride, wanting to share autism with the world.

But how much can someone learn from a button, really? I mean, can a graphic of a puzzle piece really tell anyone anything about my sons? I don't think so.

It's spring in Arizona, which means the temperatures are close to 90 degrees. It's the time of the year when I get creative in my dressing, wearing lightweight long-sleeved shirts or toting along a lightweight cardigan to put on when I have to interact with someone (especially at work). It's a masking game I play, I suppose.

Tonight as I sat in my office, it was too warm to keep the sweater on, though I figured I could throw it back on if one of the tutors had to come in to talk to me. As I sat there at the table, I looked at my arms, my living autism awareness buttons.

It's my right arm, mostly--that's the one Nick prefers. It's covered in scars, scratches, and bruises. When people see it, they usually say nothing, though others ask about my cat. I usually let them think it is my cat, rather than telling them the truth.

My son *loves* me, more that he loves anyone in the universe. And because he loves me, he wants to experience me. A typical child might just snuggle next to mom to satiate the need Nick has, but his sensory system is under-responsive; he simply wouldn't feel anything from a gentle snuggle. He wants to pinch me and bite me--hard--so that he can feel and experience me.

Yes, I'm doing all the things the so-called experts have told me to do. Behaviorists say to ignore the behavior to extinguish it, but that doesn't work for Nick--I mean, it's not like he's doing the behavior to get a reaction from me, so the whole principle doesn't apply here. I am having some success with replacement behaviors--I'm teaching him to squeeze instead of pinch and to give super-hard kisses instead of biting. And he likes to push his forehead into mine to get that physical sensation he seeks. Slowly, we're replacing the destructive with the acceptable, but it takes time.

And so, for now, my arms carry the scars of my son's love, tokens that most parents never get to carry with them as reminders of how much their children love them. I think that for Autism Awareness Month I shall just wear the scratches and bruises uncovered as my autism awareness button. Perhaps not as pretty as a colorful puzzle piece, but far more accurate.

I'm going to step into the vaccine mess

Sometimes being in the autism community is like living in Port Charles or Salem--we've got as much drama as a soap opera.

Maybe you heard the news a couple of weeks ago, the news that stirred up all the drama and fighting all over again. Dr. Andrew Wakefield, the British researcher who published an article linking the MMR vaccine to autism, had his work retracted by The Lancet because of some unscrupulous research practices.

The publishing of the retraction might as well have been a bell ringing at a boxing match because as soon as many people within the autism community heard it, they were ready to rumble.

The community has been polarized, and viciously so. People on both sides are calling their opponents ignorant nutjobs. And it's everywhere I go in the autism community--on blogs, on listservs, on Facebook. People everywhere are writing angry, impassioned messages about how stupid the other side is.

I think, perhaps, the way this is playing out is demonstrating something about the roots of autism that Wakefield's research didn't address--that autism has genetic links. In these autism moms and dads, I see mindblindness, black and white thinking, and social impairment that are all indicative of the autism spectrum.

I can understand the people on both sides of the debate. Wakefield's research practices run contrary to all the ethical principles I adhere to as a researcher, and I am deeply concerned that medical journals do not require the authors of studies to disclose their financial stake in the research. (Ethics are incredibly problematic in medical journals: click here and here for stories from NPR.) And, honestly, before autism hit my boys, I thought that parents who assumed their children's autism was linked to vaccines were just grasping at straws to try to explain away (and blame away) their children's illness. Then my little Nick was born and had some auto-immune issues. He was on antibiotics pretty much constantly throughout his first year of life. Then he went to his one-year check up. He got all of his one-year shots, plus a flu shot . . . plus all of his nine-month shots all over again because the float pool nurse who got pulled in to cover that day didn't know how to read an immunization chart. About a week later, Nick had a dangerously high fever that even had the doctors scared, and then he lost so many of the skills he'd gained in his first year--waving hello and goodbye, kicking a ball, speaking a few words. About two years later, when I took him to a specialist who ran every test imaginable on him, I found he was *still* fighting an active measles infection.

Here's the thing that makes me sad: so many people will only read half of the above paragraph. They will see my critique of Wakefield's research practices and assume I'm one of the evil people after their savior, or they will see my narrative about Nick's post-immunization horrors and call me a loon for even thinking the shots and the regression could be related (even if medical tests showed an active measles infection).

As a scholar, I am passionately committed to what Krista Ratcliffe calls "rhetorical listening" or what Mark Osteen calls "empathetic scholarship." I believe that in order for us to make any progress, we need to listen to one another and understand one another's positions. In my scholarship and in my pedagogy, I make strong calls for such rhetorical listening; I demand that the neurotypical listen to and respect the neurodiverse. I find it sadly ironic that the neurodiverse and their advocates are failing to listen to one another.

And so here is what I propose: shut the hell up. Everybody. Stop calling each other names and listen, truly listen, to what others have to say. That is the only way that we can find a shared common ground that can be a true basis for change.

Saying "I love you"

Nick had slipped out of his bed, yet again, but he was being so cute that I didn't have the heart to say "night night, sweet Nick"--the words that always make him run to either his bed or mine and throw himself under the covers.

I was sitting at the dining table working . . . okay, I was harvesting some trees on Farmville, but I was going to start doing some work soon, really . . . and Nick climbed behind me in my chair as he loves to do. He leaned around and put his lips on my cheek, the trademark Nicholas pucker-free kiss, and then decided to climb up on my shoulders. I was struck by how funny a sight it must have been, Nick perched on my shoulders as I "worked" at the computer, and I momentarily thought about how I might capture the sight on my camera phone without letting Nick slip from my shoulders.

That's when he said, "Tee-cle!" My phonetic spelling *so* does not do justice to the the cuteness that is Nick saying "tickle."

"Hey, how am I supposed to tickle you when you're up there?" I jokingly asked. And then, with my right arm carefully wrapped around his leg in case he lost his balance, I reached my left arm behind me to tickle Nick's ribs.

He laughed and then said, "I wuf you."

(Okay, my eyes filled with tears again just typing that.)

Maybe he was saying 'I love you' because I say it to him all the time when I'm tickling and cuddling with him. Maybe he was repeating the words he'd heard so many times before without understanding what they stood for.

But one thing I do know: Nicholas knows what it means to love. My little boy loves me.

And tonight he said the words. They are the most beautiful three words I have ever, ever heard.

So typical; so beautiful

Nick and I were early. Noah's after-school science club meeting was still in session, so Nick and I made our way over to the playground. He climbed up on the play structure, then ran back and forth across the bridge in joy.

A couple of little girls came over and climbed up the steps to the slide then slipped down.

Nick watched them from the bridge and laughed. "Slide down!" he said and went over to join the girls in their play. The three of them slid down the slide, time and time again, and sometimes Nick would get so excited about sliding that sometimes he forgot to wait, sliding into the girl in front of him, laughing all the way.

*******************

Such an unnotable, typical day at the playground for just about any parent. Any parent, that is, except for an autism mom. I watched my child play and wanted to call every single person in my cell phone to scream out my excitement.

You see, six months ago, Nick would not have even noticed the girls. Six months ago, Nick would not have been able to say "slide down." Six months ago, Nick would have never gone over to other kids and joined them in their play.

It's the most average, typical things that are the most precious; they are the things I celebrate, the things that make me cry.

"That sounds far-fetched"

That's what I was told when by district transportation today when they finally called me back about my report that my child had been assaulted by seven children on the bus this afternoon.

"That sounds far-fetched."

You've *got* to be freakin' kidding me.

He made this judgment before talking to the bus driver, before interviewing a single passenger, before reviewing the video tape.

I guess that in the Amphitheater School District in Tucson, Arizona, the idea of actually investigating a group of neurotypical children attacking a child with autism on the bus is far-fetched.

I guess that believing the wounds on my child came from his bus ride home would be far-fetched.

I guess that thinking the transportation department that once dropped off my severely autistic, non-verbal son AT THE WRONG LOCATION would care at all about the children with disabilities that they transport would be far-fetched.

But if you have a child with a disability and you live in the Amphi District, I don't think it would be far-fetched at all to move. Right now.

Damned Lemon Blossom!

The boys and I were in the backyard as the sun was creeping down toward the horizon. I sat on the porch proofreading my book chapter (which Noah felt was wholly unimpressive) while Nick planted himself in the sandbox and Noah perched himself on top of a little ladder to check out the lemon tree.

"Mom, how does the flower turn into a lemon?" Noah asked as he touched a lemon blossom.

I'll admit, I was geeked. I was going to get to talk to my son about cool science stuff! I went over to the tree to talk with him about pollination.

In language he could understand, I told him about the sperm and the ovules and how bees fly from tree to tree bringing the two together. He already knew about a sperm and an egg coming together to make a baby, so I said it was kind of like that--the bees bring together the sperm and the ovules in the flower, and a baby fruit is born.

I was going to tell him the part that I thought was really cool--that less than one percent of flowers ever become fruit--when he asked me a question.

"Who brings the male and female parts together?"

"The bee, honey," I answered.

"No, not in the flower. With people."

I'm not uncomfortable talking about sex; many of you know this about me. But somehow, in spite of myself, my face flushed and I struggled to find words.

And so I skirted the details, and felt completely lame for doing so. I told him about how a man and a woman decide to mate and then bring their egg and sperm together.

"Do you know what 'mate' means?" I asked.

"Yeah. Marry. Mate. Then die," he answered.

I laughed warmly. It's actually not too different from the way many men I know see the reproductive cycle. "Where did you learn that?" I asked.

"In the butterfly unit at school," he answered. Okay, fair enough. I guess a butterfly doesn't live for too long after mating.

"But how does the sperm get delivered to the egg?" Noah asked.

I knew that I had to answer the question now. For some stupid reason I was still flushed. "It's something you can't talk about at school, okay?" I said, fearing the calls home I would get when a teacher heard him say something about penises on the playground. This stuff happens. Like when Noah got obsessively interested in movie ratings, and his dad made the mistake of telling him that X was the worst of the worst movie ratings . . . Noah had no clue what the content of an X-rated movie was, but next thing I know, his teacher is complaining that Noah is talking about X-rated movies at school.

Noah agreed not to talk about it at school, and then I started to explain. "The sperm comes out of the man's penis and goes into the woman."

"This is a weird conversation," Noah said.

I laughed. "I know, honey." And just then, with our joint admission that it was weird, the nervousness was gone.

I took my son over to my chair on the porch and sat him down on my lap. I explained the nuances of male and female anatomy and how the two came together. Noah listened and put the pieces together in his head, with just a little confusion when he thought at first the belly button was the opening I was talking about. And then, when he'd learned all he needed to know, he said, "Okay, time to change topics."

So we talked about video games, and I realized my son wasn't a baby anymore.

Hangin' with Nick

Nick's part of our world now. He's still Nick, and he still has autism--he loves lines, letters, numbers, and hand stims as much as ever. It's not so much that he's changed, but that he is sharing who he is with the rest of us.

He's become social in his own beautiful way. When people he likes come into the house, he'll look them in the eye and say "tickle!" And then they tickle him. No, it's not the neurotypical "hello," but I'd say it's far more cool and interactive.

And he's sharing things with me. He wants me to be part of his experiences. I love it when he takes me by the hand and leads me to whatever is interesting him at the moment, like a ceiling fan. He'll tell me about it in his limited language, "fAn!" with a long, high-pitched "a." It's a conversation, a social interaction, and I love it.

There's so much talk of being cure/anti-cure. One side says we should accept our children for who they are, the other side says we should do all we can to free them from autism. I suppose I found a third space that doesn't fit into that dichotomy. I love my son and embrace all the beauty of who he is, and yet I'm thrilled that he's connecting with the world and will do all I can to help him do it more.