A new diagnostic tool leaves me confused as a psychologist working with autistic children

A new diagnostic tool leaves me confused as a psychologist working with autistic children

It can be hard to identify the condition, despite the fact that the number of childhood autism cases has more than doubled over the last 20 years. Sometimes it takes years for the condition to become noticeable. Even once it does, there are many different ways to look at it. There might be children who cannot speak or who stim, which is repetitive motor movements and speech, as well as those who have difficulty understanding social cues. It was only when Dahlia, my 4 year old daughter, was diagnosed with autism that I realized there was something seriously wrong. A new diagnostic test has been developed to help doctors spot children with autism earlier than ever before. LinusBio researchers created it. They claim that the technology is able to detect risk markers in hair samples long before the symptoms.

Interventions can be very helpful for children with autism who have more severe needs. Yet, it is hard to imagine what might have happened if Dahlia had been discovered earlier.

Although it is still early in its development and needs federal approval, this news makes me a huge scientist. After decades of trying to figure out autism’s science, any breakthroughs are welcomed. As a psychologist, I believe that better information leads to better treatments and results.

As a mother, however, I am not sure. Dahlia now seven. Her childhood is now 7. There may have been some interventions that I could make while her brain was so young in her first three years. Targeted methods of play — which create new neural pathways — may have helped her to connect and relate. These early intervention benefits are the focus of some of the best autism research. Interventions can relieve real suffering for children with more severe autism. Yet, it is hard to imagine what might have happened if Dahlia had been discovered earlier.

Would I ever have known she loves having her arms rubbed? I was desperate to get her to look at me so I began massaging her arm. Our favorite nightly ritual is our “arm massage”, which we do together while we read stories on the bed. Would I have suggested that she make friends when she was just three years old and was happy to go out in the dirt on her own? I worried about her being “reinforcing her autism” by leaving her alone. I wonder if that would have prevented her from noticing all the beautiful patterns and the ease with which she was able to lose herself in them. Would I be sad to have seen her squirm in my arms if I knew? This would reinforce the feeling that something is wrong and make me feel more comfortable with my quirky, Dahlia-like daughter.

Sometimes, being a parent can feel like you are tending to a bonsai plant, trimming the roots here and removing branches there in order to create a beautiful specimen. But, it is actually a lot of work. It is possible that I could have been one of these bonsai mothers if I had known my daughter’s diagnosis sooner. Dahlia was essentially undiagnosed so I watched her grow and learned that there are many beauty and value in an untended garden.

Andrew Solomon’s brilliant book, “Far From the Tree”, explains thatAll parenting hinges on one question. What is the best version of your child? Is it trying to make them conform to the norm or embracing their individuality?

The new test has another problem. Direct observation of the child has been the best way to assess autism. How will this obscure condition be understood if the diagnosis is reduced to laboratory testing? How will doctors substitute the careful observation of a child with asking questions and asking teachers probing questions? Although this new test may be considered a diagnostic aid, not a standalone measure of autism, I fear it could cause a shift in the way doctors view children.

Dahlia’s autism was a terrible diagnosis when she was first discovered. The idea she was disabled has been reinforced by society and those who treated her. We were told by the neuropsychologist in an understanding tone. We were told by our pediatrician that there are “many autistic kids who live happy lives.” This worried me. I was unsure how she would be able survive in the mainstream school, and still go to dance class or art classes like her sister. How about college? My job was to ensure that my children were well taken care of before the clock ran out.

Dahlia taught me and my father that Dahlia doesn’t require fixing. Dahlia is the one who fixed us. Dahlia forces me to stop, slow down and take a step back from whatever is going on. After watching her build a world out of sticks and plastic forks for the frog that she caught, my friend called her “Gossamer Dahlia.” Her passion is to create intricate structures out of plastic and cardboard. She also loves painting with her entire body. When she solves a problem, her dimples get deeper. She also packs and repacks everything she takes with her when we are away from home. What makes autistic children different from other kids? Maybe it’s not just the child that must change, but rather the environment around her. Maybe a little ignorance is better for both them and us.

Sarah Gundle

Sarah Gundle, a psychologist, lives in Brooklyn with her daughters. A doctorate in clinical psychology, and master’s degree in international affairs have been her qualifications. She is also a member of the Mount Sinai Hospital faculty.

Continue reading