Autism isn’t just “blue.” It’s a spectrum. Except that almost nobody’s including the pink. Talk about autism and you’re usually talking about men and boys. Too often, there is no girl talk. No from-the-inside-out women’s perspective. The girls are barely visible. The women are afterthoughts. Too often, I am a token. And my daughter is invisible.
And that’s not good for anyone. The impact of mis- and under-indentification is SERIOUS (read: eating disorders, self-harm, dating violence….big, bad, avoidable stuff).
Frankly, autism needs pink. Maybe some lipstick. Or not. I don’t really care how any particular woman “does” her own version of female, so long as we get to be part of the club.
Autism in Heels, (c) Jennifer O’Toole
It’s Autism Acceptance Week: what better time to announce that Skyhorse Publishing will be publishing my 7th book (here’s where you can find the others), the FIRST memoir of its kind: “Autism in Heels: The Untold Story of a Female Life on the Spectrum.” I am SO proud to work with Skyhorse as they share this story with the broader world. For the daughters, sisters, mothers, and selves yet undiscovered – I’m offering my life, real, unedited, and imperfect….from good to bad and secrets in-between – with truest hope that you ALL love what you read.
While we wait for the book, be sure to visit our “Girl Power Reboot” page, discover “Sisterhood of the Spectrum,” AND my series for Amy Poehler’s Smart Girls at the Party. And now, as my thanks for ALL of my readers’ support thus far, here’s a little taste of what’s to come in….
Chapter 1: The End of the Beginning
“I barely made it here today,” I admitted to my therapist, voice low and wavering. “You see, I’d thought it was me. But I’m not it. The link, I mean.”
Her forehead crinkled. “To their Asperger’s, Jennifer? Is that what you mean? You thought you might be the connection to your children’s diagnoses?” I nodded, wiping away a rogue tear. “OK, then. Tell me,” she pressed.
I opened my secret blue notebook and, words pouring out of me, began explaining all it held: months of research, unspoken personal details, disconnected stories of naiveté and never-saw-it-coming moments.
My tears spilt until my eyes fell away from the psychologist. I didn’t really need to reference the pages anyway. This was my life story I was telling. I knew it by heartache.
And then there was silence. Somewhere in the office, her voice murmured. “Jennifer?” she called. “Jennifer, why does it matter to you? The diagnosis?”
“Because,” I replied, “it would mean that I’m not a total failure at being human.”
She smiled gently. “You’re not a failure, Jennifer. And yes, I’m quite certain you do have Asperger’s.”
In so many ways, the last year or so before July 2011 had been rough. My best friend — my sister, really — had been diagnosed with aggressive, Stage IV breast cancer. She was thirty-one at the time and fighting for her life. My daughter had been a Make-A-Wish Kid after seven years in and out of hospitals. I’d given birth to my third child, and shortly thereafter, my two eldest children – Maura, 7, and Sean, 4 – had been diagnosed with Asperger’s Syndrome, which is on the autism spectrum. To top it all off, just today, my husband had unceremoniously told me that he had been diagnosed with Asperger’s, too. He’d come home from his psychologist appointment and said that, actually, they hadn’t been talking about the kids for a while.
“I had to fill out a whole bunch of questionnaires,” he’d said, popping open a can of Diet Coke. I’d sat in silence for a moment, then stepped closer. Nonchalantly, he’d pried a piece of Nicorette from its bubble pack. There it was. Teeth clenched, vein thrumming at his jaw. The giveaway. The clear, message: keep your distance. You are too much for me to take.
It was a sensation I knew well. From friends. Boyfriends. When my dad would light up or pour another scotch, or my mom would roll her eyes, telling me to get to the point. Something about me, though I couldn’t name it or change it, was always too much.
The Missing Link
Information has always been my life preserver when feelings get too deep. Give my brain something to grasp hold of and I will not drown. Which is why I reacted to my children’s diagnoses like a scholar. If I was going to be able to empower and embolden them, I’d simply have to learn everything I could about Asperger’s. Autism. ADD and ADHD and a plethora of other acronyms that ran together like a perverse alphabet soup.
I poured through the most respected books in a close reading, the likes of which I hadn’t done since graduate school. Family anecdotes, professional journals, to-do lists and teacher strategies. I attacked them all with fierce analysis, neon highlighter between my teeth and pencil in hand, scribbling in margins and filling every square inch of that blue journal.
All for the kids.
It wasn’t long before, neck-deep in all of this autism-self-education, I’d begun to recognize someone else in the stories and bullet points.
If my daughter and sons were what Asperger’s looked like, then surely, my father, who’d passed away only a few years before, had been their genetic twin.
Joe Cook was a brilliant man. An international commercial-litigator who couldn’t remember the names of the couples who’d been in his bridge group for fifteen years. Awkward and anxious in social settings, he’d managed, during a dinner event, to walk into the ladies’ room of a favorite restaurant. Twice. And, harder to swallow, on weekends I’d come home to visit from college or graduate school, he’d likely pour a glass or two of J&B Scotch, say some hellos, and then leave, heading out to spend a night or two on his boat. But reframing him — considering him in terms of autism — changed everything. Suddenly my absent-minded professor Daddy seemed a whole lot more human. Vulnerable. And easier to love.
Slowly, gingerly, a kernel of hope began to germinate. Maybe there was grace enough for two of us. Maybe autism hadn’t skipped a generation.
Cracking the Code: The Chick-list Checklist
Where were the girls? Heck! Where were the women? Asperger checklists were easy to come by. Most were very clinical, not any kind of “here’s what that looks like in real life” scenario. But I’d already worked through the techno-jargon-meets-actual-people conundrum for my children. By this point, I was pretty much bilingual in Autism-on-paper and Autism-in-practice. I lived with three “Asperkids” (a nickname I’d invented) and most probably had been raised by a dad on the spectrum, too. I didn’t need a portrait of an Aspie for my own benefit. I could go into a room and pick out spectrummy folks by instinct.
But instinct does not a diagnosis secure.
This lawyer’s daughter knew that, in order to go into a psychologist’s or psychiatrist’s office and articulately lay out a theory, she needed a precedent. An equally-bright-but-happens-to-love-lipstick-and-heels version of Asperger’s. The trouble was, no matter how hard I looked, I couldn’t find her.
In the early days of autism research — the foundational days, really — teams of all-male researchers, like Dr. Hans Asperger, observed all male patients, mostly children. Eventually, those clinicians’ observations became the basis of the autism profile. And more boys are, logically, going to fit criteria that came from observing and describing boys. No wonder I couldn’t find my someone. How was a catalogue of autism spectrum characteristics based on little boys in pre-war Vienna going to help me? In 21st century suburban America. In a minivan. And bra. With a predisposition towards glitter.
In all of the research I did, I found only one exception to the Mystery of the Missing Women: an HBO biopic about a scientist named Dr. Temple Grandin (she’s also now a dear friend and mentor — but I’m getting ahead of myself). Renowned professor and engineer, Dr. Grandin had spent the first part of her childhood without speech and had almost been institutionalized. As a world-renowned personality, she lives every day happily attired in bolo ties and rodeo shirts (she still is, and rocks them, thank you very much). “Eccentric” professionalism, she calls it. Sure. I knew there was no right was to be a woman. But I favor little black dresses and heels. So, at least on a surface level, Dr. Grandin couldn’t be the precedent on which to hang my handbag.
Mine was going to have to be a one-woman proving ground. If I was going to be able to add to the autism conversation, to translate male to female, then I’d first need to know WHY the boys did what they did. What behaviors might we, gals, employ that looked different enough to avoid professional notice, but might actually be serving the same purpose? How might autism present itself in a woman like me?
I began with what I knew: all human beings share the same fundamental needs. Of course, there are the basics like food and shelter and safety. But there’s so, so much more. Communication. Spirituality. A sense of belonging. Of purposeful work. Every culture in every age in every land has had different ways of addressing the specifics.
So what universal needs were those Viennese boys meeting? That’s what I was going to have to figure out in order to explain, coherently, why the Aspie profile glowed in the dark for me. Those dang train timetables weren’t the key. They were just one way of satisfying an obviously acute, common need.
Dr. Asperger’s patients, apparently, loved train timetables. Maps of their routes, too. Extrapolate. All I had to do was close my eyes and imagine. Forget the intellectual, go for the emotional – what would feel good about knowing which engine would be where?
The beauty of order. The reliability of fact. People are unpredictable. Facts, though, are sturdy. A display of pleasure without anxiety. That was the reason for the beloved train schedules and map-making. It was also the reason that, as a child, I’d memorized every genealogical and historical fact associated with Little House of the Prairie author, Laura Ingalls Wilder. The same reason that I’d chosen to write my honors thesis on Barbie and the particulars of twentieth-century women’s fashion. I’d naturally fulfilled the same need for security and predictability as the boys. Restyled, with a modern-girl makeover.
The parallels weren’t hidden to anyone looking. So, why wasn’t anyone looking? Peering behind what the boys had done and pay attention, instead, to why they were doing it? Had I lined up trucks or trains, preferring to admire and display them as a way of playing? No. But, in thinking about it, I had lined up all my Barbies for wedding album photo shoots rather than make up stories with them. Same end. Different means. This seemed like common sense.
So I carved out stolen moments, gleaning patterns from whatever I read, matching academic jargon up to the very-much-everyday experiences of my family. Pieced together, they were a real-life portrait of Asperger’s. A mosaic of ages and personalities. Well, I’d pleaded silently, was I part of the picture, too?
Clearly, not. My husband and I couldn’t both have Asperger’s, for heaven’s sake. Which meant that he had cornered the genetic link. That he would walk away with a map to himself, a clarity that had almost been mine. Just as I felt hope slip from my grasp — I was given the greatest gift no one expects to want: the words, “You do have Asperger’s.”
Everything else stopped. And for me, real life began. I had been granted grace, space to move and understand myself. I could breathe. I could come to love what I have been given.
Autism isn’t just blue. It’s a spectrum. Only nobody’s including the pink. Talk about autism and you’re talking about men and boys. There is virtually no girl talk. No from-the-inside-out women’s perspective, the girls are barely visible. The women are missing. Which means that I am missing. And my daughter is invisible.
Frankly, autism needs pink. Maybe some lipstick. I don’t really care how any particular woman does her own version of female, so long as we get to be part of the club. After all, we’ve earned our membership. Years ago, a reporter asked Ginger Rogers if she found it hard, keeping up with Fred Astaire. With a coy smile, she answered him simply. “Not really. After all, I did everything he did. Only backwards and in high heels.”
A Different Kind of Normal
After I was finally diagnosed, my daughter’s psychiatrist (for whom I have always had great regard) began a session by asking if she might first speak to “Mommy” alone. Nervously, I closed the office door and waited. What she said was completely unexpected. It was also powerful and powerfully courageous.
“Jennifer, I don’t know whether I ever said so, but I didn’t see your daughter’s Asperger’s at first. The boys? Absolutely. But not her,” she admitted calmly, and then leaned in. “But, you made the case, point by point, and asked me to stick around without judgment for a month or so. You were tired and had been through a wringer of psychologists and specialists and I’ll be honest, I thought you’d be wrong about her. Jennifer, you weren’t. Every observation was spot on, and four years later, not only do I have no doubt about her Asperger’s, you taught me what some of the world’s best medical schools couldn’t.” She smiled and sighed. “Be sure. By sharing your own journey, thousands upon thousands of girls will be blessed. You will be doubted, for certain, just as I doubted you at first. What I don’t doubt, Jennifer, is that you will do anything to to save hearts from suffering. So go out and teach the world, just as you’ve taught me.”
For those of us who spend so much of our lives estranged from easy forever-friendships and carelessly-happy Happy Hours, we, girls are outside the outsiders, still knocking on the door. In other words, while those of us with autism may all be skirting the edges of various bell curves, we gals ought to be dancing…on the beautiful edges of the “Belle” Curve.
It shouldn’t take half a lifetime — plus research and investigative work by the individual herself — to declare, “Congratulations! You’re not broken. You’re a different kind of normal. And you are not alone.”
Unzip time. Look backwards with me, and you will surely see the today of someone you know. And she deserves better. More than a life repaired in retrospect. She deserves a full life on the human spectrum.
OK…that’s my cue. It’s showtime for My Not-Your-Average, Sometimes-Beautiful, Always Real, Glitterously Female Life (With Autism). Tell you what? I’ll even let you peek behind the curtain. Just look for me/