Despite the fact that childhood autism diagnoses have more than doubled in the past 20 years, the condition can be difficult to spot. It can take years to manifest in such a way that it is noticeable, and even once it becomes so, it can still look wildly different — from children who can’t speak and who stim (using repetitive motor movements or speech) to those who might just have trouble figuring out social cues. I know because it was not until my daughter Dahlia was 4 years old that I came to firmly believe there was something clinically “wrong” with her. Now a new test is being developed that can help clinicians spot autism in children earlier than ever. It is the brainchild of researchers from a new startup called LinusBio, who say the new technology can find markers of risk in a hair sample long before symptoms appear.
For kids whose needs are far greater — those who are more deeply impaired by their autism — interventions can alleviate real suffering. Still, I wonder what would have happened had I known about Dahlia earlier.
While it’s still in the early stages and will need federal approval, as a scientist, I am tremendously excited by this news. Any breakthroughs in the science of autism are welcome after decades of stumbling in the dark. Furthermore, as a psychologist myself, I have always believed that more and better data leads to better treatment approaches and outcomes.
But as a mom, I’m not so sure. Dahlia is now 7. Looking back on her childhood so far, I don’t know if she or I would have been better served by knowing about her autism earlier. Of course, there may have been interventions I could have made while her brain was still so plastic in the first three years of her life. Certain targeted methods of playing — creating new neural pathways — might have enhanced her ability to relate and connect. Some of the most innovative autism research focuses on the benefits of these very early interventions. And for kids whose needs are far greater — those who are more deeply impaired by their autism — interventions can alleviate real suffering. Still, I wonder what would have happened had I known about Dahlia earlier.
If I had known, would I have ever discovered how much she likes having her arm rubbed when, desperate for her to make eye contact with me, I took to massaging it? Now, one of our favorite nightly rituals is the “arm massage” we perform for each other while reading stories in bed. When she was content to play in the dirt by herself at the age of 3, would I have insisted instead that she try to make friends, worried that by leaving her there I was “reinforcing” her autism? Would that have gotten in the way of noticing the gorgeous patterns she created, the way she could lose herself for hours in their simple symmetries? If I had known, would I have despaired at the way she squirmed in my arms, thereby reinforcing for both of us the sense that there was something wrong with her, instead of coming around to see it as just another Dahlia-ism, a quirk in my wonderful quirky daughter?
Being a parent these days can sometimes feel like tending a bonsai tree, carefully trimming a root here, or snipping a branch there to achieve what appears to be a perfect specimen but is, in fact, something of a simulacrum. I fear that by knowing my daughter’s diagnosis earlier, I might have become one of those bonsai moms. Instead, essentially unaware of Dahlia’s condition, I stood back and watched, and she taught me that there is much beauty in a garden left to grow untended.
Andrew Solomon wrote in his brilliant book “Far From the Tree” that “All parenting turns on a crucial question: to what extent parents should accept their children for who they are, and to what extent they should help them become their best selves.” The question for any parent of an autistic child — or really any child born “different” — is what is their best self? Does it lie in trying to mold them to conform to a more general norm, or does it lie in giving up that dream and instead embracing their differences?
There’s another reason the new test worries me. The traditional means of assessing autism has always been the direct observation of the child. What will we lose in understanding this mysterious condition when the means of diagnosis are boiled down to laboratory analysis? What will happen when doctors replace the process of carefully observing a child, as well as asking parents and teachers probing questions, with reading the results of some tests on a hair follicle? This possibility of a new test is meant to be used as a “diagnostic aid,” not as a stand-alone measure of autism, but I still fear that by introducing it into the diagnostic regime, it will chip away at that psychological probing that leads to a more nuanced view of children themselves.
When Dahlia was first diagnosed, I thought of her autism as a calamity. Society and the people treating her only reinforced the idea that she was disabled. The neuropsychologist who told us did so in an apologetic tone. Our pediatrician told us not to worry, that “there are many autistic children who grow up to have a happy life.” I worried that I had to rush to fix her. How would she be able to exist in her mainstream school and go to the art class and dance program her older sister attended? What about college and getting married? The clock was ticking, and my job as a parent was to make things right before it was too late.
What I have learned, what Dahlia has taught her father and me, is that she doesn’t need fixing. It is Dahlia who has fixed us. At least once a day, she forces me to slow down, shake myself out of whatever I’m doing and listen. “Gossamer Dahlia,” my friend called her after an afternoon observing her create a whole world, including furniture made of sticks and plastic forks, for the frog she had caught while the other kids played football around her. She delights in building intricate structures of cardboard and plastic and creates paintings using her whole body. Her dimples deepen when she figures something out, as well as when she packs and repacks her bags whenever we leave the house. Why do we need to strip away what makes an autistic child different? Perhaps it is not the child but the world around her that needs to change. Perhaps a little not knowing is the best thing for them, as well as for us.