There was a time before I was a parent, long before I was an autism parent, when I thought I knew what autism was, and what I knew was that it was scary. It was described as an epidemic. (I have even seen sympathy cards for autism, if you can believe it!) I saw commercials and videos of children lost to this disorder hiding under tables and in corners, crying or staring, rocking, pulling away from their grieving parents. I was not yet a parent, but I followed these stories just the same, heartbroken for them, terrified by the idea of what they were going through. I couldn't imagine the pain of watching the light go out of your child's eyes, of having your precious baby stop communicating and start avoiding your touch, silent and suffering. I prayed that if I ever had children, they would be spared.
When the time came, with that fear still the back of my mind, I watched my children grow. I saw their quirks and oddities, and I read articles and checklists, comparing, wondering because this is how I deal with uncertainty: researching, reading, asking professionals, reaching out to understand. I noticed that my first child preferred to sleep alone than to sleep in my arms, that she often arched away from my cuddles. I noticed that she didn't say "Mama" or "Dada" or "dog" or "ball" at 12months, and that when her first words came between 12 and 18 months they were simply "ah-choo", and "uh-oh". I noticed as a toddler that she could endlessly entertain herself without any input from me, although she'd welcome me if I chose to join her. I noticed that when she was really excited about something new (a carousel ride, a pony ride, etc) she didn't smile or laugh like other kids, but was perfectly stone-faced, only showing emotion when she had to be torn away from the exciting thing. I noticed that by three she spoke like an adult, and could have screaming melt-downs that lasted for hours for no apparent reason. She loved going to preschool, but didn't always recognize her teachers or classmates if we saw them at the park or in the supermarket.
I asked questions, but the pediatrician said she was just fine. Friends said she was delightful. Preschool teachers said she was precocious. She was happy too. She laughed a lot, she wasn't very physically affectionate but she'd accept hugs (often backwards), loved tickles, and loved talking and visiting. She was playful and curious and tenacious. She couldn't be autistic, because whatever she was, it didn't resemble the withdrawn, sad, lost kids I'd seen and read about in those stories.
Fast-forward four years and I have another baby girl. Like her sister she doesn't talk by 12 months, or 18 months, but she is cuddly, happy, content. She laughs a lot, she looks me in the eye, plays with my face, snuggles for comfort when she falls. She is also good at keeping herself occupied, and loves to explore. She teaches herself how to walk earlier than her siblings, and can climb and balance on anything and everything. She's relentless about figuring out the things she loves, like setting up toy animals in groups or playing with letters and numbers. She doesn't always look at me when I call her name, but she has amazing focus on the thing she's doing. She doesn't point, but she pulls me around to show me what she wants and needs. She doesn't wave bye-bye, or pay much attention to visitors, but she'll play with you if you join her, and she's hugely attached to me. She's my happy, sweet side-kick. But she's not talking. Again, the pediatrician isn't expressing concern; she reminds me that my kids are late-talkers, and she'll probably start talking in full sentences soon. Physically my baby's robust, healthy and happy - she probably doesn't feel like she needs to talk.
But of course, as we would later discover, both these children are on the spectrum, although in different places, and in some very profound ways the messages given by well-intentioned autism awareness groups delayed our discovery of this fact. Because what the autism campaigns inadvertently taught me, and many other people, was fear, worry, and pity, but they did not teach me how to *see* autism. They did not make me aware of the fact that, for many many people, autism looks like my children. They did not make me aware that autism doesn't always look like rocking and staring and stimming, but can be happy, friendly, creative, bright, funny, and even affectionate.
The message of fear was so profound that one sunny day I walked lightly into a building to have my happy two-year-old evaluated, and walked out two hours later with the same child, feeling as though I'd received a death sentence. My chest was in a vice, all the air and hope sucked out of my body. I was devastated and terrified and crushed. I was drowning. Autism had swallowed me, and everything I'd seen to that point told me that this was my worst fear realized. There was no room left beside the fear for recognition, appreciation, or openness. Because who can feel open to an idea that terrifies them?
I was aware of all that fear, but not aware of what I should have seen: the very same child walking beside me, smiling and holding my index finger just like she had on our way into that building.
She had not changed. The A-Word that had just attached itself to her meant nothing. It held no fear. If I could have seen through all my fear I might have seen that same amazing little girl more clearly. I might have seen that for her, autism didn't mean closure, hopelessness, withdrawal, or tragedy. And if awareness campaigns had done a better job of truly making those around me aware, I might not have had to spend the next year explaining to friends, family, and strangers that yes, she really is autistic even if she "looks normal," whatever that means. She is autistic, and she is normal. Normal for her. And yes, she is still as incredible and adorable, and sweet as she was before.
Autism is serious, and for some it is as intensely debilitating as the stories and videos depicted,but for the vast majority of the families I've met with children on the spectrum, this is not the face of autism.
Which brings me to what I think is missing in these awareness campaigns: understanding of autism without fear. Because while fear moves us powerfully, that movement is not always for the best. Fear overrides rationality, objectivity, and openness. In short, it creates the very stigma we wish to dispel.
This impression of autism, the profound fear and pity that those awareness campaigns elicit in the hearts and minds of so many people, inadvertently becomes part of the problem we face when trying to find and treat children with autism. Doctors are afraid of suggesting to parents that their child might need testing, because parents (like me) are terrified of the A-Word and don't want to hear that their child might "have it." Fearful parents may leave a good a pediatrician who suggests their child might need to be evaluated. Therapists have learned that the fear drives some parents to fire them if they try to tell them their child exhibits signs of autism. This, in turn, makes therapists unwilling to tell parents when they see autistic behaviors, believing that it's better for the child to receive some therapy and no diagnosis, than no therapy at all. I learned this first-hand. I asked Ellie's early evaluators point-blank if they thought she showed signs of autism and, while it was clear to them she did, they had been instructed not to say anything to parents. They said that she showed no red flags, but that I could consider further evaluation to know more. And for every parent like me who insists on knowing more, there are half a dozen parents whose fear drives them away from finding out. They want to believe the friends and family and doctors who tell them their baby "shows no red flags", or "seems just fine," and given what they know of autism, who could blame them?
So, in an effort to make people aware of the increasing prevalence of autism, and to make them understand how serious this issue can be, many of these campaigns are inadvertently scaring parents and professionals away from seeing and addressing what's right in front of them. They have made autism a terrifying word, and talking about it forbidden, dangerous territory.
Most of my family has Celiac Disease, and when I meet a family and they tell me that their child has digestive issues that sound like Celiac Disease, I can bring that up. I can talk about our experiences with gluten, what I've learned about recognizing and testing for Celiac's, and how much easier it's been to live with and address than I'd expected. I can freely share that information without fear of terrifying someone. But when a parent talks about their child who is non-verbal, or who is having obvious social trouble, or sensory trouble etc I do not have that same freedom. Even suggesting that their "normal" child might have something in common with my "autistic" child can be perceived as over-stepping a boundary - as insulting. And when this taboo stretches to include conversations with friends, family, and even doctors, many children can go much longer than necessary without testing, and without therapy, because no one dares to break the code of silence inadvertently created in the name of awareness.
I wish I could have felt as comfortable with the word "Autism" that day as I felt when I heard the word "Celiac", or "footling breach". All these words carried challenges, but only one of them invoked terror.
I wish I'd known then what I know now. I wish I could have learned to see sooner. I wish I could have trusted that my amazing little girls were no less amazing for their differences, and that the joys they could bring would be breath-taking. That far from being the end, the word "autism" was just the beginning--that the understanding and help it brought could open the door to infinite possibilities. I wish that I could have recognized how many amazing people were on the autism spectrum, so that it could have been demystified.
So this April, while we "light it up blue", I hope that Autism Awareness campaigns can work to address the fear, the stigma, the taboo that lingers around the word Autism. It is not a dirty word. It is not a death sentence. We need to be able to have open conversations about this topic, to discuss freely the challenges and the blessings, to encourage people and empower them, to create an environment of openness to the diversity among us and our children. We need to acknowledge the awesome in autism, every bit as much as need to face the sometimes serious challenges. But most of all, we need to erase the fear. Because fear is a much greater enemy to us and our children than any label.
My Fearless Girl