A recent NY Times opinion piece on toxins and autism has been making the rounds lately, and well, frankly, the piece bugs the crap out of me, and I can't quite figure out why. After all, it seems like, not just an excellent idea, but a complete no-brainer to want to ensure that that the products we use -- that go into our air and water and foods and bodies -- are safe and non-toxic. And it seems reasonable to be concerned, given the thousands of untested chemicals in use every day, about possible links to our health: from the way they affect our organs and tissues to the way they affect our neurological processes. And it seems reasonable to me to want to investigate what autism is and what causes it. And yet...

Maybe it's the fact that the first few paragraphs contain the words "frighteningly common" and "financial and human cost" and "burden." Words matter. And those words, rather than including my son Austen and others like him in the human family, set him apart, as a burden and a cost that the rest of us have to shoulder.

Maybe it's the focus on autism in particular. If the concern is truly about the effect of toxins on our health, why call out autism rather than talking about either cancers or neurological issues generally (both of which were mentioned almost in passing)? Instead, autism is set apart.  Autism is chosen to be the poster child for neurological issues; autism is the frightening specter from which we all must run; autism is the enemy; autism is the pawn in this political game.

Maybe it's that several paragraphs are spent on what pregnant women ought to be doing and only one sentence is spent on the mention that often, at least in the one quarter of autism cases that are genetic, there is nothing a pregnant woman could be doing differently at all. Maybe it's because I can already hear the same voices -- the ones who told me that the "costs" and "burden" of Austen being autistic were my own doing, because I vaccinated him, because I let him watch TV, because I had him when I was over the age of 30 -- now telling moms this is their fault for using the wrong shampoo or for painting their nails, when that may not be the case at all.  The factors are so complex and difficult to tease out that we simply do not know right now, and may never know.

Maybe it's that all of those things leave me feeling that autism is set apart, that my son and my family are set apart, that we are (and have brought on others) a burden and a problem to be eliminated, rather than being an integral part of a situation we all need to work through together.

My son Austen, like many other autistic individuals, does not like (or understand the purpose of) many of society's little pleasantries. He balks at words like hello, goodbye, please, sorry and thank you; anything that can appear in a conversation as part of a rote pattern rather than a unique communication. This can seem rude, especially when it comes to words like "sorry" and "thank you," which are supposed to convey emotions of regret or gratitude. It seems (at least to the neurotypical world) that if someone doesn't say "thank you," they don't feel thanks. That certainly may be the case at times, but Austen's difficulty in grasping the meaning of these stock phrases has made me realize how often I toss them out because it's what is expected, rather than because my own emotions are in line with the words.

A few days ago, Austen was picking up a bit of ribbon next to where our cat was sitting. The cat took this as an invitation to play, batted at the ribbon and scratched Austen's hand. It was a tiny scratch but Austen cried bitterly for fifteen minutes, stopping occasionally to inspect his finger and breaking into fresh tears each time he saw the thin red line on his finger. I sat next to him stroking his back and waited until he was composed enough to accept a bandaid. As soon as I had him settled, Janie and her friend Valerie came running into the room. Janie had fallen down and scraped the palms of her hands as she tried to catch herself. This was the time for saying neurotypical things like "oh, I'm sorry you hurt yourself" or "can I see your hand, please?" Austen's conversation didn't go that way, of course, but it was just as sincere.

"Let me see!" he said. Janie held out her palms. "Oh, you need two bandaids!  It's bad that you need two. See, I have a bandaid too. Kitty scratched me and I cried and cried. But good that you're not crying so much like I did. And you know what else is good? Valerie doesn't have any bandaids! Good that she didn't get hurt." I realized that all the things society wants to hear were there: "How are you? I'm sorry you got hurt. I empathize.  I'm glad to see you're going to be ok." But there was something else there that we don't usually celebrate: "You and I may be hurt, but let's be grateful that someone else we love is safe and well." In seeing the specific situation rather than tossing out the generic words I might have, Austen saw something that I would have missed: an opportunity for gratitude.

Of course, there are situations in which he does use the expected words (if in unexpected ways), and they're all the more meaningful for their rarity. A few months ago, I caught a stomach virus from Janie. I started to feel ill at the end of the day; Mark was on his way home and both kids were with me. On my way to the bathroom as the first wave of cramps and nausea hit me, I let the kids know that I was feeling sick like Janie had been, but that I was going to be ok and that Daddy would be home soon to help me take care of them. When Austen heard me vomiting, he asked from outside the bathroom door, "Do you have the throw ups, Mama?"

"Yep. I sure do, sweetie," I said.

"Oh, bad that you do," he said, and I heard him walk off. A few moments later, he wedged something into the door frame. It was a card from the board game Sorry!.

He said, "I put a Sorry card there for you, because I'm sorry you have the throw ups."

"Oh, I love that! Thank you so much, Austen." And that thank you, as I think Austen knows, didn't really feel sufficient to express my gratitude.

April is awareness month for two issues that are near and dear to my heart:

Autism

April is National Autism Awareness Month and April 2nd is World Autism Day. Of course, my family doesn't need a special month or day for autism; around our house (and many of yours) every day is autism awareness day! However, there is still much to be done to educate the general public about autism. To that end, this month I'll be making a donation to one of my favorite autism organizations: The Autistic Self-Advocacy Network. And of course I'll be blogging. Do any of you have any special plans?

Alcoholism

In addition, April is Alcohol Awareness month, and one of my favorite recovery sites, The Second Road, has asked me to share the following announcement:

The Second Road will be showcasing a recovery story every day during the month of April. We want to applaud those living in recovery while helping to bring awareness to addiction and to also make people aware of the strong community of support that exists.

TSR wants to salute the people who are battling alcoholism; as a child, a parent, a spouse, sibling, or as an addict. Be it 22 years or 2 days, we want to hear from the people making the decision to start a new path, to take the second road. TSR hopes this showcase will inspire not only those who are living in desperation, wrestling with the will to get sober, but also encourage those already working a program.

Community, support and inspiration are necessary on the road to recovery. If we can heighten the awareness of this disease, hopefully we can lower the amount of people living in pain.

Please, make YOUR voice heard. Submit your story to alix@thesecondroad.org.

Happy Awareness Month, everyone!

You may be thinking, "But what's wrong with featuring wheelchairs?" According to disability statistics from the University of California San Francisco, "Very few children (88,000, or 0.1 percent of the population under 18 years of age) use wheelchairs." And according to a study of the underlying health conditions of children using crutches and wheelchairs 43 percent have cerebral palsy, 12 percent have spina bifida, and 8 percent have muscular dystrophy. So, of those .1 percent using wheelchairs, an even small percentage are going to be the type seen on TV shows: kids whose legs don't work but are otherwise typical developmentally.

In their real lives, children are much more likely to encounter other children with autism, cerebral palsy (with or without a wheelchair), Down Syndrome, ADHD or even dyslexia than neurotypical children with non-functioning legs. Our family is friendly with several kids in wheelchairs, but we have yet to engage in a friendly game of wheelchair basketball or to look on in surprise when, after fun and laughter at the pool, a child climbs out of the water and gets into (gasp! I would never have guessed it!) a wheelchair. When my kids first spent time with them, I spent less time talking (to my daughter at least) about the wheelchair than answering questions about what it means why Suzy doesn't talk and what it means jerks her hands like that or why Bobby doesn't laugh when everyone else does. (Actually, my son was almost entirely interested in the wheelchair itself and not much at all in its occupant.)

Both of my kids have been able to accept and understand basic physical limitations quickly; but because we spend our days in a mix of autistic and neurotypical children, the ways people think, behave and communicate differently are topics we work on every day. I spend a lot of time having conversations with my kids about the different ways that people's brains work and the different ways people interact with each other and the world. And I find myself wishing, when we sit down together and turn on the TV, that the shows we watch could reflect true diversity: not just someone who acts and thinks and experiences the world exactly the way everyone else on the show does, but with wheels.

I have to say, Diane Sawyer made me roll my eyes with her patronizing pop psych analysis of parents as trying to put a good face on "heartbreak." As a friend of mine, who is the parent of an autistic son once told me, we all deal with the diagnosis differently. Some of us may throw ourselves into looking for a reason or a cure. Some may make it a personal mission to learn disability law. Some may try to hide differences. Some may try to change differences. Some may try to accept differences.

Call it a coping mechanism if you will, Ms. Sawyer, but if so, you've got to put all of us -- from the parents using chelation on their children to the parents who wouldn't cure autism if they could and everyone in between -- into the same pot.

Photo credit: by LoreleiRanveig on Flickr

Before I started blogging, I'd never heard of the neurodiversity movement, although I'd certainly heard plenty about autism in the mainstream media. It always hurt to hear autism referred to as "devastating" or "brain damage," since my son has always seemed different, not damaged to me. I don't mean to minimize his challenges (or ours); some of that difference definitely makes it very hard for him to function in the world. But some of that difference also means he can do and see things I can't.

I can't separate his autism from him. It's all part of who he is and always has been. I love him as he is: beautiful and whole -- and autistic. So, it was a delight to start reading blogs and discover the neurodiversity movement, which I truly believe is making the world a more accepting place for my son.

There is a good article in New York Magazine about neurodiversity, which provides an excellent overview and features several wonderful bloggers. (It also makes up for that bad article about sex and marriage the magazine published earlier.)

In addition, Angela at Memoirs of a Chaotic Mommy (who is so on top of the news, dang!) also posted an announcement that there will be a segment tomorrow on ABC's Good Morning America featuring Ari Ne'eman of the Autistic Self Advocacy Network, Kristina Chew of Autism Vox, and Dr. Thomas Insel of the National Institute of Mental Health. Sorry for the late notice, as I know most of you will read this too late to catch it, but at least I have it all set up to record. And I'm sure it will show up on YouTube eventually if you miss it!