Autism's Big Elephant in the Room
Autism awareness has come a long way, indeed. Even from 2000 (when our son RJ, a fraternal twin, was diagnosed at three years old) to today, there is such a more robust and accepted platform for this baffling spectrum disorder that affects more children than diabetes, AIDS and cancer combined. Millions of research dollars have been raised and there is much more dialogue and compassion in the U.S. about autism.
Yet, the elephant in the room is that despite all this awareness, NOBODY still seems to know what causes it—even a long 16 years after our diagnosis—and, yet, the prevalence continues to soar exponentially.
Imagine... A pediatrician rattles off a checklist of what your toddler will likely never be able to achieve in life: mainstream in school, have friends, play team sports, communicate properly, say "I love you, mommy" unprompted. Then, you are told doctors have NO answers as to why your kid is like this all of a sudden. You question yourself, "Did I do something wrong?"
The guilt and Monday morning quarterbacking were soul-crushing for me back then. Crazy as it sounds, for many years, people blamed autism on bad parenting. (I still hear this theory bounced around, sadly, by educated folks who should know better.)
The collective shoulder-shrugging by doctors and researchers at the question of causation wears on a parent and is a source of tremendous frustration, confusion, depression, grief, desperation and often rage.
To make matters worse, in the face of this absence of crucial information, when some autism parents who are at their wits end dare to doubt, question or voice their concerns and desire for more conversations and research about potential effects of environmental triggers—including inoculations, GMOs, pesticides and other things—it can be met with cruel indifference and mean-spirited name calling. The bullying of parents of children with autism is real.
I have experienced mind-numbing frustration about the lack of progress on causation. My hope is that there might be more compassion and empathy for those who have received this gut punch of a lifelong diagnosis for a child. Nobody can tell us why our kids became this way, and we are supposed to just accept that? Sometimes, we—OK, I—can express frustrations about this rather bluntly with little care about whose feelings are hurt in the process. It can be maddening, and I have developed mommy-fortified armadillo skin and, apparently, have become a bit "gangsta" as a mom (according to my husband... and kids).
I attribute that to the fact that as a rookie mom of twins, I remember feeling such intense feelings of helplessness and ignorance because I had no idea what autism was or where to turn. Autism surely wasn't in any of the parenting books I devoured. There was no Welcome To Autism handbook.
That helplessness turned into anger and resentment. I also remember feeling ostracized and excluded from the "mommies of typical kids club." They were concerned about how little Jeffie didn't get a perfect score on a spelling test, while I was celebrating RJ not melting down at a party for once, pointing at what he wanted or saying something unprompted. I couldn't relate to the other moms. I was a Bitter Barb and was baffled at their ignorance: One mom told another she wasn't sure if autism was contagious or not, so until then no playdates with RJ. Yep, that was in 2000. We've made progress, thank God.
When my son was diagnosed at 3, I thought I could love the autism hard out of him. My husband Rodney, then an NFL quarterback, thought he could coach it away. But ultimately, we had to immerse him in intense therapy and intervention and slowly try to coax him out of his autism shell. Thankfully, we had the resources to do that.
RJ is 18 now and has come so very far, with many struggles ahead. He has checked so many "nevers" off that hope-starved pediatrician's list in 2000. These kids with autism grow up to be teens with autism, and, oh, by the way, there was no manual for that either.
My anger and resentment morphed into advocacy and compassion for the autism community—especially those who are under-resourced and need better access to services.
Our journey on the "autism express" ebbs, flows, uplifts, deflates, depresses and endears. It has taught me patience, compassion, acceptance and tolerance in ways I could not have imagined. Even this gangsta armadillo-skinned mom can admit that!
So, this April (and every other month), if you come in contact with an autism parent, give them a big accepting and loving smile followed by a pat on the back. Even if you know you could never imagine walking in their shoes.
Tune in for an all-new episode of For Peete's Sake on Saturday at 9/8c.