Happy Autism Awareness Month!

Merry Autism Awareness Month?

Be AWARE!

Beware ...?

Whether you're "lighting it up blue," sporting ribbon magnets on your car, or are feeling kinda Grinchy about the whole thing, as I was this time last year, your perspective on Autism Awareness Month is appreciated and welcome here. If we're truly going to be "aware," we need to be honest. And my "awareness," I'll admit, has been an ongoing journey.

Last summer, I wrote a post called "Loving Lampposts, Curing Autism and the Dark Night of the Soul." It has been suggested by people who love me that I made myself sound crazier than usual in this post. I countered with the fact that it was in no way unusual.

Anyway, shortly after I wrote the piece, including my heartfelt wish that Tallahassee would soon screen the film Loving Lampposts, I got an email from the filmmaker. Todd Drezner, father of an autistic son about the same age as Billy, wrote to just say "Thanks" for mentioning the film. And he said he'd keep me posted if the film made its way Southeast. What a mensch.

Flash forward to Autism Awareness Month 2011 and guess what: Local screening of the now award-wining "Loving Lampposts: Living Autistic!" If you're local, details (date/time/place) are in the sidebar at the right. If you aren't local (or even if you are and can't be asked to attempt campus parking), you can now order the award-winning film on DVD (click on the banner ad above).

"Loving Lampposts: Living Autistic" follows Todd's journey as a parent from diagnosis of his son's autism to acceptance and beyond. He poses the question, "Is autism a sickness or simply another way of being and thinking?"

He introduces the audience to the recovery movement: those who think of autism as a disease that needs to be cured. Among their most notable advocates is celebrity Jenny McCarthy, a proponent of the anti-vaccine movement.

And he speaks to advocates in the neurodiversity movement: those who believe autism is simply another way of thinking and being. They promote the importance of support for and acceptance of autistic people. Speaking for this camp are scientists and autistic adults like the brilliant Dora Raymaker, working on her graduate degree in Portland, as well as Stephen Shore, a professor at Adelphi University. As an autistic child, Stephen was recommended for institutionalization. Now he teaches music to autistic children and lectures around the world.

I'm not giving away any more of the details of this moving film, but I highly encourage you to see it. As a parent of an autistic child, I believe the message of this film is important: The more we can do to introduce the world to real autistic people, the better prepared it will be to embrace and support their unique brains.

And now, because no holiday would be complete without presents ....

PRIZE! PRIZE! GIVEAWAY! FREE! FREE! PRIZE! ENTER! PRIZE! GIVEAWAY! FREEBIE! SOMETHING FOR NOTHING! FREE! FREE! PRIZE! PRIZE!

I'm going to give away a copy of the "Loving Lampposts: Living Autistic" DVD to one randomly selected reader. To enter the giveaway, here's all you have to do:

• "Like" LifeIsASpectrum.com on Facebook. That's easy: The button is right there at the top right-hand corner of the page.
• Post a message -- ANYTHING -- about autism awareness on our Facebook page. It can be a personal experience with autism. It can be an urging to "Light it up blue," or it can even be a "Happy Autism Awareness Month" song you've written. You can even write, simply, "I'm aware."

Post a comment on this blog after you've completed these steps, so that we can give you credit for them. That's all you have to do to enter.

BUT ... while not required to enter, you can get one ADDITIONAL entry into the competition for doing EACH of the following:

• "Like" Loving Lampposts on Facebook.
• Follow LifeIsASpectrum on Twitter. (Again, you can just click the Twitter button in the top-right corner of this screen.)
• "Like" sponsor Pea Green Solutions on Facebook.
• Follow sponsor Florida Commerce Credit Union on Twitter.

Again, post a comment here to let us know that you've completed any of these extra entries.

The winner will be announced on Friday, April 15, 2011. If local, that person will also receive reserved seating at our Tallahassee screening of the the film, along with their family.

I want to say thanks to a few people who helped make this screening happen:

Todd: I can't wait to see your next film, after seeing the thoughtful, honest and beautiful way you addressed our community and posed some very controversial questions.

My sister, Sam Strickland, CEO of Pea Green Solutions: Without your social network (and I mean that in the old-school "I have to actual KNOW people" kind of way) I'd simply be some nerd with a website ... whose son would be going to a school half an hour away.

Florida Commerce Credit Union: Board member J.R. Phelps spearheaded the sponsorship of this screening, and we couldn't have done it without him and them. FCCU is more than a financial institution; it's a community leader in Tallahassee. (And I'm not saying that just because I have two mortgages there ... wait, make that THREE mortgages.)

The Florida State University College of Motion Picture Arts is the best-kept secret in Florida. No, make that the COUNTRY. Seriously, this is one awesome film school, and I would go on and on about its phenomenal alumni and dude of a Dean, but you should really just enroll and find out for yourself.

And the CARD Center. Where do I even begin in thanking CARD (Center for Autism and Related Disorders)? From the moment we started suspecting a "problem" to our most recent IEP meeting, the CARD Center has been literally at my right hand. I always feel like I have an advocate, that Billy has an advocate, whether we're facing an autism diagnosis or the equally daunting challenge of potty training. CARD's commitment to the family dealing with autism is the reason we chose their Autism Foundation as the beneficiary of this fundraiser.

Everyone donating $25 or more to CARD's Autism Foundation will receive a copy of the DVD of "Loving Lampposts: Living Autistic." If you're local, we hope to see you there. If you aren't local and can't find a screening near you, click the banner ad at the top of this page and you can order your own copy of this inspiring and hopeful film.

I recently read a baffling post on an autism support group message board. In this post, a woman had provided a link to a story claiming that abortion cells in vaccines had been proven to cause autism. This article -- and I'm not going to post the link, because I don't want this non-science to do any further damage -- claimed that the EPA (Environment Protection Agency) had released a report stating this.

Before I go any further, let me just state right upfront that I'm not debating abortion here. I, like just about everyone else, have strong opinions about the subject, and I'd be happy to discuss those one-on-one with you any time. But in this forum I'm talking about autism. And occasionally about stupid TV shows I've watched.

So anyway, back to this baffling post. I was immediately suspicious, because this supposed EPA report hadn't been mentioned anywhere else. I know I'm kind of out of the loop, but that very morning, CNN had led with another story about a deer getting trapped in a Dunkin Donuts, so it didn't seem like they were aware of this report either.

I Googled every possible search term related to this, and the only places I found this link mentioned were on anti-abortion websites. You'd think it would have come up on some autism sites as well. But no.

I finally found a link to the EPA report in question, but when I tried to read it, my brain froze and I could imagine my head generating one of those little hourglass icons like my laptop does when it gets overwhelmed. Despite the fact that I am a big nerd and went to Science and Math Camp in the 11th grade, as I approach the age of 40, I find myself definitely NOT Smarter Than a 5th Grader, particularly when it comes to science.

But luckily, I know people who are. I emailed one of my favorite bloggers at Science-Based Parenting, and asked him to interpret for me. He went one step better: He emailed the guy who did the research and wrote the report, and asked him, "Hey, did you say that autism was linked to abortion cells being used in vaccines?" And the guy emailed back a lot of stuff but basically said, "Umm, no. I did not."

There are also no aborted fetal cells in vaccines. According to the Center for Disease Control, "The rubella vaccine virus is cultured in human cell-line cultures, and some of these cell lines originated from aborted fetal tissue, obtained from legal abortions in the 1960's. No new fetal tissue is needed to produce cell lines to make these vaccines, now or in the future. Fetal tissue is not used to produce vaccines; cell lines generated from a single fetal tissue source are used; vaccine manufacturers obtain human cell lines from FDA-certified cell banks. After processing, very little, if any, of that tissue remains in the vaccine."

Essentially, back in the 1960s, fetal cells from two abortions were used to grow vaccines. Whether or not you think that should have happened, rest assured that no further abortions have occurred in service of the vaccine industry. Even the Pope has said that getting vaccinated does not in any way mean that you support abortions.

Some of the sites that are claiming a link between vaccination and those original abortion cells cite the growing number of autism diagnoses that have happened since the 1960s as their proof that that's the cause.

Well, based on that logic, I could say that there's been a spike in autism diagnoses since the premier of the Law and Order, and I'm holding series creator Dick Wolf personally responsible and leading a boycott against procedural cop shows in general, just to be sure that CSI isn't part of the problem as well.

That's a ridiculous analogy, I know. But at least if that were my crazy theory, the worst that would happen is that there would be a slight dip in the Neilsen ratings amongst those dumb enough to buy this nutty rant.

But there are much greater dangers in following a half-baked scientific theory that leads you to not vaccinate your children. Not only to expose your child and others to potentially life-threatening diseases but as has been discussed here before, following this non-existent vaccination link any further wastes time, money and energy that much much much smarter brains than myself can be putting towards real research with the potential to reveal the real root cause of autism.

Cause and effect is an exhausting search for the parents of autistic children. We are always watching, searching for signs that anything -- a particular food, a drug, a color, an environmental factor, a sound, a vitamin or a new therapy -- will have any effect, good or bad, on our child's development. We rely on experts to tell us the truth, because we don't have the time or the energy to become experts on everything ourselves, and there are so many supposed experts lying to us for their own financial or political gain. There are also a lot of good people working tirelessly on real science and not grabbing headlines like certain celebrities that will not be mentioned again here.

Like I said, this is not a debate about abortion. If that's your fight, no matter which side of the debate you're on, leave autism out of it. Don't let pseudoscientists hijack your moral argument. It will backfire. Because when the facts come out, people will doubt your judgment if you've been, however innocently, lying to them.

Now because I feel like I've been on a soap box too long, and standing up here kinda makes me dizzy, I'm gonna tell you a Billy story that has absolutely nothing to do with any of this.

Billy has discovered the joy of blowing on Willow's tummy and making her laugh. It totally cracks him up. He's still laughing long after Willow has stopped. So the other day after blowing on Willow's tum for about half an hour, he finally said, "Blow on Mama's tummy!"

I was lying on the couch at the time and lifted up my shirt to expose my abdomen. He blew on my stomach for about 5 seconds, then stood up, pulled my shirt back down and shook his head. "This tummy," he announced, "is too big."

Out of the mouths of babes. Off exercise now in the hopes of shrinking my "too big" tummy into shape to meet my 3-year-old's tummy-blowing requirements.

It's time for Willow's one-year vaccinations. No mom likes "shot days," but for the parents of autistic children, it's particularly fraught with stress.

Despite overwhelming scientific evidence that there is no link between vaccinations and autism, the debate continues. Court cases continue. The number of parents opting out of vaccinations increases and the cases of measles and whooping cough increase.

I understand the fear. There are times I feel it, strong and heavy on my chest, pressing me to make judgment calls that conflict with my rational brain.

But that's not how I make decisions for my kids. If I did, I would never let them out of the house. The world is teeming with scary "what ifs?"

No, my kids, even my autistic son, will be vaccinated.

There was a time when I believed Billy's problems started at about 15 months. It's a fact that he said a few words at 11 months, and by 15 months, he had stopped almost altogether.

However, having a "neurotypical" daughter -- that's what we say in the special needs community to avoid using a meaningless word like "normal" -- I realize all the things Billy didn't do much earlier. He never pointed -- still hasn't, actually. He never handed me things and then asked for them back. His babbling, unlike Willow's, didn't sound like attempts to communicate. The sounds were more repetitive. And getting our attention -- or giving us his -- was never high on his agenda.

I'm fairly certain Billy's problems were there, in one form or another, from birth. Those challenges are just easier to identify as kids get older. Their differences from their peers are more apparent, because more is expected of them.

I'm quite literally tired of the vaccination debate. But it's a familiar tiredness. It's the same weariness that threatens to swallow me when I face many of the questions about autism: Is this therapy or that therapy actually doing anything? Is he making gains or am I just wanting to see improvements? Does this new treatment have any science behind it or is someone else just after our money? Do I need to invest the time and energy in educating myself about some new breakthrough -- or can I bribe Dave into reading about it?

We're willing to try anything. We've tried the gluten-free, casein-free diet. We've done Therapeutic Listening, music therapy, weighted vests, brushing therapy (imagine brushing a horse and then insert the image of a ticked-off three-year-old into your vision), fish oil, magnesium supplements -- there is no investment, financial or time-wise that we are not willing to make. We would happily bankrupt ourselves to save our child. I have taken a break from my career to be a full-time mom, and that has been the best decision I've ever made. Every spare minute we have we happily offer up to our babies with joyful hearts.

So when Jenny McCarthy goes on Larry King or Oprah and says that she "cured" her son's autism because she was willing to "do what it takes," I'll be honest, I want to punch her in the mouth. And I'd probably get beat up because she kind of scares me.

But she should know that my son's not still autistic because we weren't willing to do what it takes. We are. We so are. I have tried things (yep, brushing therapy) that would have made me laugh out loud a year ago. I have invested in things that two years ago I specifically said I would never try. I will not judge you for trying anything -- as long as it's not harmful -- to save your child.

So I'm not going to judge you if you decide not to vaccinate your children. I just want to put my position out there, because if there's some mom who is being pressured to avoid vaccinations and wants to hear from someone from the other side ... well, here I am.

I've read the science. I've debated the topic with my husband, with other moms, with therapists and doctors. I've wracked my brain and spent many sleepless nights sifting through the facts, the emotions, the fears. I've sought the opinions of friends and strangers in the medical and science community. I've listened, I've argued, I've questioned, I've read. And I've come to a decision.

If the science changes or evolves, so will my opinion. And if you'd like to discuss my reasons further, feel free to contact me. But not on Wednesday, because that's the day Willow's getting vaccinated.