It’s 2009 and Senator Joe is Dead. But the heart of McCarthyism still writhes and gushes. Loudly. And messily. The Joe McCarthy Hollywood fretted over has replaced him with Jenny. Jenny McCarthy. Playboy model-turned actress-turned-activist-turned-writer. And like the McCarthyism of yore, the searchlight for suspects has turned on innocent bystanders, with unquestioning members of the public — armed with information on “The Cure” — taking up the witch hunt for wrong doers. And I am one of them. A wrong doer.
I have been one since I unexpectedly launched the arduous journey of raising a child with autism. One would have to be a gnome living in a moss enshrouded tree trunk in the middle of the woods of nowhere to not have a family member, close or near; or know someone who knows someone with the neurological disorder, or to have heard about it from countless media sources. Our numbers have zoomed to the heights of one in 150. My problem is just what and where have others heard about it and are they now, armed with flashlights, ready to blind me with their sure-fire hear-says that chocolate therapy works? A hug-a-day cures? That this complex brain-wired disAbility it is even curable? And if I have not tried the Cure Du Jour, then I must be a bad, very very bad, mother. Or that maybe there’s a dark hole in my spirituality. Like, I didn’t pray hard enough.
Dare I even admit that I embrace my child in all of her autism-ness? That I think she’s perfect just who she is, with a crazy mixed-up and unique bag of genes born into this world of myself and her father?
Truly, I have nothing against this beautiful mother who is crossing the country claiming her son has been cured. And who am I to say he is not? Science is rapidly morphing. Conservative researchers at my area leading university are changing their tunes. What we are finding is that SOME children, if diagnosed before Two, and met with intensive varieties of intervention, sometimes “lose their label.” But something’s still askew — a learning disAbility. A speech disorder. And what we don’t know is what these children will look like when they round the corner and plunge into Abyss of Autism Adolescence. Indeed, as I described the symptoms of my young teen daughter’s anxiety, the nutrition Ph.D. on the end of the telephone line noted, “Yes, we are seeing these [and other] difficulties happen with our ‘recovered kids.'” Hello? Could it be they never recovered? They just got better?Children with autism do get better. As a 12-year-veteran on the autism/disAbility journey, having criss-crossed the country myself, I, along with others ask: Where is the 10 percent of cured children? It’s more likely like one percent. Four in 400,000. I’ve met two adults who seem to demonstrate the phenomena of “passing through the autism spectrum.” Which is as mysterious as the subgroups that have yet to be parceled amid the 10 to 20 or more genes that scientists are decoding as contributors to the disorder.
What I see are children who are paraded as “cured” or “recovered” (what’s the difference? Inquiring minds really want to know). They show the same level of symptom “extinction” that my friends’ kids who just have the genetic coincidence of probably having a similar subgroup of genes and yet who didn’t do stem cell transplants, blood letting and inversion therapies. (I am not making these up!) They go to Kindergarten with their typical peers without an aide…and…ssSHHHH!…: They still have autism!
By embracing this differently abled child of mine, I have been likened, by the cure mindset, to the hypothetical mother who chooses to accept her child has cancer, “throws up her arms in the air,” and says “no” to chemo. Back in 1997 it was XYZ therapy. Hot, hateful debates and divisive finger-pointing rhetoric were hurled at mothers like me who chose another route for various reasons: lack of substantiated research at the time, adults on the autism spectrum who said the therapies felt abusive, the gnawing feeling in my gut that violently shook it’s head no.The belief that, despite her autism, my child still deserved a childhood.
A swift kick back into that era came in recent years when I appeared on a national talk show featuring the topic of autism. Grace and I were socked out on the behind-the-scenes studio sofa afterward. One of the anchors, known for her cheeriness, not, acknowledged me long enough, with seeming disdain, to ask in her characteristic nasal intonation: “Did you do XYZ therapy with your child?” I had to rehire my therapist over that. Here’s the problem. And it happens too often to families like mine and to others who have children with various disAbilities. It is so easy to read what Jenny did. What the mother featured in your home town paper tried. What you don’t know is the dynamics of the child. The financial constraints of the family. The emotional dearth of the parents. The support, the lack of support. The medical care that that child may be getting or unable to get. What caused a particular child’s autism? Most (all all) of the time we don’t know the latter. (And I don’t discredit environmental causatives, but there must be a genetic base or we’d all have autism, triggered by particular toxins we all receive, ingest, breathe, etc.)
Instead of spotlights searing the skies and beaming out from Hollywood or ubiquitous internet sites, or the popular rag…We. Just. Need. Empathy. Support. A kind word. A helping hand. Don’t assume we’ve had our collective heads in a hole and haven’t heard about controversial causes or treatments or that we haven’t tried them. (And, yes, while we need more than kindness and consideration, I know it’s more complex, but I’m dealing here with public perception, attitudes and gestures here.) If you’re just DYING to ask me if I’ve tried Turnip Juicing, how about prefacing it with: “I know you research a lot and know so much more about this than I do since you live this life everyday. I was just curious, have you heard of shadow dancing, and what do you think?” I’ll tell you. And, hopefully, I’ll be nice about it. But remember, I’m okay here. And I’m not alone in my perspective. I have chosen to wrap my heart around this gift of different-ness. Yes, it hurts too often. I had to reroute my expectations. It’s SCREAMINGLY frustrating sometimes. But I’ve discovered the Joy. I’ve unearthed the Blessings. And I have lots of Hope for my daughter with autism.
My daughter, Grace, will not be going to college with some of her other peers who have autism. (When a child is two, you cannot know what they will be like when they grow up.) But what I did do was to research, learn, discuss and follow convention only when it felt right. There was a lot that did feel right for this otherwise non-mainstream mama. And then I diverged. I did “crazy” things like allowed art into her challenged world. Her damaged brain, I rightly reasoned, might have a penchant for right-sided endeavors. She was still a kid, I challenged the conventional mode. She deserved the joys of art, music and dance like her typically developing peers. What I discovered at four was the artist that she has become. (www.GraceGoad.com) While she can communicate her basic needs, and we’ve just gotten a talk device to help her, she cannot yet carry on conversations at age 15, like many if not most of her peers who have autism. But art. Now that is her language. Is is not a language that needs a Hollywood McCarthyistic Cure. It is a language of beauty. Beauty that transcends labels and disAbility. And that, my gut, my head and my heart can embrace.
This post was written last 2008 as a guest post for the lushly written Velveteen Mind. But blogger Megan Jordan was barraged with life and more guest posts than she could handle during her version of NaBloPoMo (National Blog Posting Month — one post a day in November and Megan’s irreverent take on it, GoBloMeMoFo, of which I’ll let you figure out the meaning). So, I snatched it back quickly when I saw, Glory be, O, The Oprah Magazine had taken on it’s own Jenny McCarthy. (Sorry no online version available at blog publishing time.) I’ve written a letter to the editor and my vision that someday my yet published autism momoir will be featured on her show is restored.(Hey, we’ve already been on The View. Stop rolling your eyeballs. Anything is possible.) I thought Jenny had drowned out all the voices that weren’t Cure Mindset. Thankfully, Oprah and her magazine still honor diversity.