Published on April 27th, 2022 | by Laura Pierson1
Can we please get rid of those terrible “early signs of autism” posters?
The daycare my son attended as a baby was about a mile down the street from the school where I taught. In what felt like my only act of self-care in those first awful months after maternity leave, I would sneak away during my off-period for a chance to give my milk directly to a real baby rather than the humming, plastic pump. I would snatch him off the play mat and find us the rocking chair in the quietest corner of the room, and he would give me a big smile before eagerly settling in on my chest.
But the less sweet thing I always remember from these afternoons was the poster on the wall next to that rocking chair. The title was something like “Early Detection is Everything” and below it listed milestones for typically developing kids as well as “warning signs” that should prompt a parent to speak to their pediatrician. Somewhere on the poster was a reference to “Autism Awareness.” The illustrations of typical milestones showed cheerful, babbling babies, smiling and interacting with their caregivers; beneath these were pictures of a vacuous toddler exhibiting the warning signs, staring off into space, unable to make eye contact or respond to his own name. I remember thinking how awful it must be to look at this poster and know that your child isn’t meeting their milestones. I remember feeling pity for these hypothetical mothers. I felt so smug, so weirdly proud, to look down at my child’s big eyes, locked on my face, those eyes that first made eye contact with me only hours after he entered the world. I whispered his name and noticed the recognition in his eyes. I thought, thank God I don’t have one of the babies they are talking about in this poster.
But the strangest thing about this memory is that these thoughts already made no sense. Even in that first year of my child’s life, I knew he was a little different. Other babies in that room would wave at me when I came and left; I kept waiting for my son to learn this same skill, would model waving, would say, “look at your friend wave!” but to no avail. And while other babies were laying on pillows or in caretaker’s laps throughout the room happily suckling down bottles, I had to leave a list of detailed instructions for how to get my son to maybe take a bottle (quiet corner, white noise, rocking motions), and even then it was far from a sure thing.
My point is, I’m not sure why I read that poster and thought that it applied to other mothers, other people’s children. But it probably has something to do with the shock I felt two years later when a neurologist confidently diagnosed “Autism Spectrum Disorder” and I responded with at least twenty “What about…” type questions. I had described my dynamic, interesting, loving toddler to this doctor, and her response sounded dire and clinical. That poster was the same. All of it seemed so unfortunate.
But our home is not unfortunate. It’s fun, silly, sometimes chaotic, often a little strange, but not sad or tragic. My son, now 4-and-a-half, has a favorite Lego Star Wars picture book. He loves little details in the comic strips, like when the Jawas yell out “Utini,” a word in Jawaese that is translated at the bottom of the page to mean, “Look out!” My son also hates having his fingernails cut. To avoid the struggle, I always put it off as long as my mom-shame can tolerate. The other day, I told him it was past time and we had to do something about his nails. To my surprise he cheerfully agreed. I quickly gathered a small wastebasket and nail clippers, seizing the moment so to speak. With each clip of his nails, he joyfully yelled at the top of his lungs “UTINI!” Ten times: clip, “UTINI,” clip, “UTINI,” clip, “UTINI.” By the time I clipped his last pinky we were both laughing hysterically.
“Why,” I asked between giggles, “are you screaming ‘utini?’”
“Because I don’t like the sound of you cutting my nails,” he replied, as if it was the most obvious thing in the world.
“So…” (I’m dense and needed to clarify), “you hid the sound of the nail clippers by yelling a word you like?” He smiled, nodded, and we moved on. With much more sanitary looking hands, I should add.
I guess I could retell this story to say that my child over fixates on small details in books. Or that his sensory challenges make it difficult to complete everyday tasks for personal hygiene. Or to describe his behavior as utterly bizarre. But that would completely miss the point, which is that raising an autistic kid is fun, and funny, and surprising, and also sometimes challenging–the same way all kids are fun, funny, surprising, and challenging, just maybe in different ways.
Which gets me back to those damn posters. Autistic self-advocates have raised concern over stigmatizing public health campaigns for years. In his book Neurotribes, Steve Silberman gives an account of how in 2007 an emerging group of autistic self-advocates successfully petitioned NYU’s Child Study Center to take down a billboard ad-campaign that was written as ransom notes to parents of kidnapped children and signed by “autism.” The now well-established Autistic Self-Advocacy Network along with other voices in the neurodiversity movement have changed the mainstream conversations around autism, and child development more broadly, for the better. We have mostly, for example, made the shift from calling April “Autism Awareness Month” to “Autism Acceptance Month.” Organizations like Autism Speaks have finally abandoned pernicious language about finding a “cure,” and identity-first language is becoming increasingly the norm.
But there is also an added level of hand-wringing over kid’s developmental milestones lately, mostly over concerns about the effects of the pandemic, but most recently in response to the CDC’s recent decision to revise milestones for ages 0-5. In fact, the CDC has a new campaign with the taglines “Learn The Signs. Act Early.” and “Milestones Matter.” It seems like every day I read an article about parents, even parents of typically developing children, crushed by milestone anxiety.
To be clear, it is important to recognize early on if your child is autistic. First, because our healthcare system makes getting a diagnosis incredibly difficult, and insurance companies often deny services without said diagnosis. Anecdotally, I know of it taking well over a year to get an appointment with a child neurologist or psychiatrist that can diagnose ASD. But more importantly, a diagnosis can provide parents with a set of vocabulary and resources to better understand their child. Once my initial shock and reservations subsided, I found my son’s diagnosis to be liberating. It has given me the opportunity to learn from autistic adults and parent in a way that respects his needs while supporting his growth as best as I can. So absolutely, if you suspect that your toddler is autistic or otherwise experiencing developmental differences, talk to your pediatrician as soon as possible. But a public health campaign that illustrates autism as a scary and shameful condition is going to do nothing to inspire parents to seek support for their kids. Instead, it stigmatizes a whole group of people and their families and flattens the autistic experience.
So, If your child’s school, daycare, or pediatrician’s office is still sporting one of those toxic posters, I think it’s time we offer an alternative. Thankfully, autistic people have created some brilliant options. This Signs of Autism poster flips the script with “symptoms” like, “Sees beauty is details that others ignore,” and “Plays with toys in ingenious and creative ways.” Plus, it uses a cute, happy narwhal instead of those sad, despondent toddlers. There are plenty of other great options, too, like this one that illustrates diversity, or this informational poster that defines neurodiversity. It’ll take time to root out the ablist mindsets many of us were raised with and bring to parenting, but changing the messages on our walls can be a pretty simple step in the right direction.