One of My Twins Was Diagnosed With Autism. Now What?
At a playground with my two-year-old twin girls on a warm spring morning. The sky is clear and cloud-less. The girls have found a puddle, and Clementine has plopped down in the middle of it, inciting uproarious laughter from her sister, Penelope, who quickly followed suit. They are undoubtedly sisters and today, they act the same.
But they are different. The way any set of siblings is different, yes. But also more so. Penelope routinely engages with other toddlers. Clementine, meanwhile, prefers to be on her own when she’s in close proximity to others. She also tends to avoid direct eye contact. That’s because Clementine, my wife and I recently learned, is autistic.
Clementine was officially diagnosed with autism at 21-months-old. To be more precise, she was diagnosed with “mild autism.” My wife and I are not sure if her diagnosis will be a life altering condition or have no impact at all. Were it a few years ago, Clementine, we were told, would have been diagnosed with Asperger’s. “Mild autism” is a relatively new diagnosis without a fully developed set of expectations or social script.
Upon hearing Clementine’s diagnosis for the first time, my wife and I had very different reactions. She immediately broke down crying. She cried for days. And she’s still in the process of grieving the “perfect life” that we imagined for our children. My emotional reaction was not so immediate.
I first had to contextualize Clemmy’s diagnosis. I spent the first 30 years of my life struggling to overcome several anxiety disorders. Against all expectations, including my own, I’m now a seasoned trial attorney and standup comedian. My wife is even more of an enigma: a clinical psychologist with bipolar disorder. She presents as this hilarious, happy-go-lucky figure but the reality is that she’s chronically suicidal and struggles daily to get out of bed. If “mild autism” turns out to be Clemmy’s cross to bear, it’s no more daunting, I thought, than the burdens my wife and I have already overcome.
My wife’s biggest fear is that Clementine will be ruthlessly mocked and bullied throughout her childhood. But I’m more worried about Clementine feeling inferior to Penelope,
But I am certainly not without my worries. My wife’s biggest fear is that Clementine will be ruthlessly mocked and bullied throughout her childhood. But I’m more worried about Clementine feeling inferior to Penelope, which admittedly spawns from my own experience as a twin. My brother and I entered kindergarten in the fall of 1983. Kindergarten was half a day for most kids, but a full day for me. I vividly recall the first day of school: I don’t remember waiting for the bus or saying goodbye to my mom, but I can still picture my brother going home at noon.
Before kindergarten, we took an “entrance” exam to spot any potential learning issues. As a result of my evidently low scoring on one part of the test, the school suggested that I spend my Kindergarten afternoons attending a program called KEEP. I don’t remember much about what we did in KEEP. What has obviously stayed with me is the fact that it singled me out as “different” — even from my own brother. I hoped it would be different for my daughter.
Our pediatrician first raised concerns about autism at Clementine’s 12-month wellness check. Without any prodding from us, she used the word “self-stimming” to describe the way Clementine was soothing herself at times during the visit. My wife immediately realized what the pediatrician was suggesting, and broke down on the spot. We already had our own suspicions, but thought it was way too premature for the doctor to sound the alarm. Professionals who specialize in diagnosing autism won’t even attempt to make a definite diagnosis until 18 months. Self-stimming is a behavioral trait associated with autism, but it’s also within the realm of “normal” infant behavior. When I confronted the pediatrician with this line of thought, she back-peddled and apologized for causing any unnecessary distress.
Of course, it would not have stung as much if it wasn’t something that we had already been thinking about. Even before our girls could crawl, I noticed a stark contrast between the quality of eye contact between Penelope and Clementine. Penny has always demonstrated more interest in people, exhibiting particularly intense and prolonged eye contact. On the other hand, Clementine has always been more interested in things. While Penny was studying the contours of my face, Clementine would spend 30 minutes playing with a tiny tag that was attached to their floor mobile. Penelope regularly plays with our neighbor’s daughter, who’s a few months older. Clementine clearly wants to engage with them but something holds her back. Despite all of these observations, my wife and I assumed that the contrast between Penelope and Clementine could be attributed to personality. We would even joke that Penelope was a comedian like her dad, and that Clementine was a misanthrope, as is her mom.
In the weeks following our wellness visit, my wife and I were more preoccupied with Clementine’s physical development. While Penny started walking at 10 months, Clementine still had trouble sitting up. She was approved for physical therapy but we had trouble connecting with a suitable therapist. The only therapist who showed up at our house was allergic to cats, and wouldn’t even cross the threshold. Clementine finally started walking at 16-months, well within the normal range. After all that stress, it was much ado about nothing.
But just as we were coming up for air, it was time for Clementine’s 18-month wellness check. We scheduled this one with a different pediatrician to try on a pair of fresh eyes. We didn’t plan on discussing autism but it manifested when we expressed our concern about Clementine’s speech development. At 18-months, a toddler should be able to say several (single) words, say and/or shake her head “no,” and point to show someone what she wants. Clementine didn’t satisfy any of these minimal expectations.
Although my wife and I both went into the evaluation expecting the diagnosis, it was still jarring when it became official
The pediatrician made a referral to have Clementine assessed for Early Intervention programs, including an evaluation for autism. Within a few weeks, Clementine was approved for services through Early Intervention, including speech therapy, occupational therapy, special instruction, and an autism evaluation. By the time she was diagnosed, she had been receiving weekly home-based therapy for more than a month.
Clementine was evaluated by a psychologist in our home. She sat on the floor facing the psychologist. He placed a shape sorter at her feet and invited her to place the objects into it. However, each time she attempted to insert an object into a hole, he would block it with his hands. A “normal” child, he said, will eventually look to the evaluator as a form of communication. Clementine, however, remained focused on the objects, repeatedly trying to move them by force. He even blocked her from leaving the the living room, and she still failed to offer any significant eye contact. During the entirety of the exam, she displayed limited gestures, poor imitation skills, used no functional expressive language and even had difficulty responding to her name. On the bright side, Clementine did not exhibit any self-stimming during the exam.
Although my wife and I both went into the evaluation expecting the diagnosis, it was still jarring when it became official. My wife tried to hold back her tears but was again overwhelmed. She may not have been surprised by the diagnosis but she wasn’t ready to accept it yet.
Immediately following the evaluation, the psychologist took time to address the elephant in the room: “Did we do anything wrong as parents?” His answer was, in short, no. The cause, per the doctor, is likely genetic and has nothing to do with any parenting decisions we’ve made up to this point. Of course, it’s natural to look back and second guess certain practices or choices that were made along the way.
Fortunately, my wife and I have concrete evidence that environmental factors did not cause Clementine’s autism. We had a real life twin study. Penelope was exposed to the same environmental factors and displays no signs of autism.
I worry for Penelope, too. I learned after the diagnosis that the estimated seven million “typically developing” American children who have siblings with disabilities face many of the same challenges — and joys — as their parents
Parents expect twins to be different. But just how different you never imagine. Now, it’s clear how different their growth is. Penelope has been developing ahead of the curve and continues to excel in many areas. The other day, she started rattling off the alphabet while traversing an obstacle course. It was amazing, and yet, I felt guilty for applauding her success. Sometimes, it’s difficult to get excited about Penny’s accomplishments without feeling guilty about Clementine’s limitations. We don’t want Clementine to feel bad about her own abilities and yet we don’t want Penelope to feel neglected by muting our excitement.
I worry for Penelope, too. I learned after the diagnosis that the estimated seven million “typically developing” American children who have siblings with disabilities face many of the same challenges — and joys — as their parents. But they also face a suite of other problems. For instance, some resent the demands placed on them at an early age by their siblings; many feel neglected by their often overburdened parents.
We’ve already felt ourselves fall into this trap. It feels impossible not to. Even though we were aware of these potential issues, my wife and I immediately shifted our emotional resources towards Clementine. This meant that we unintentionally began to pay less attention to her twin sister. Prior to the diagnosis, my morning routine with the girls typically involved an hour or so of TV, or however long it took to get my bearings straight. Now, it’s all dependent on which baby awakes first. If it’s just me and Penny, it’s business as usual (Peppa Pig, Sesame Street, Inside Out, Moana, etc). However, if Clementine is the early bird, class is in session. I feel pressured to avoid TV at all costs, and engage her in pro-social games and activities.
It’s a bit overwhelming. Fortunately, we have help for Clementine. Through New York’s Early Intervention Program, she’s now eligible for up to 20 hours a week of therapy and instruction. Moreover, the instructors aren’t just there to help Clementine. Much of their job is to teach my wife and I how to work with and educate an autistic child. Studies show that early intensive behavioral intervention improves learning, communication, and social skills in young children with autism spectrum disorders. It’s even possible that Clementine will shed some symptoms over time, and be non-symptomatic by the time she enters kindergarten. While I’m anxious about the road ahead, I’m optimistic about her future.
While I’m anxious about the road ahead, I’m optimistic about her future.
Still, it will take me a while to treat my girls differently. The other day, my wife and I were playing with the girls on our outdoor patio. Penelope and Clementine were doodling with chalk, a pastime they both really enjoy. We had been out there for a good hour when Penelope suddenly got bored and wanted to go inside. She left. A few minutes later, I asked Clementine if she wanted to go inside, which was met with a complete non-response. She just continued doodling without a care in the world. Eventually it was time for dinner, and I told Clementine that we had to go back inside. Once again, she just kept on doodling. I decided to go back inside and wait by the door, expecting that Clementine would follow me. If it were Penny, she would have sprinted after me. However, Clementine proceeded to ignore me.
Then, it clicked: Clementine is not like most children. While I’m not exactly sure what that entails, I know my daughter; and I know that she enjoys solitude. I can’t draw her in but maybe I can compel her by my sheer presence. So, I went back outside. Clementine smiled from ear to ear and climbed on my lap. She lingered for a moment and grabbed my nose. We both laughed out loud. A moment later, she dropped her chalk and walked back inside, without even looking back at me.
“Maybe this is what it’s like to have an autistic child,” I thought. Then, for the first time since the diagnosis, I broke down. I don’t think it was tears of sorrow. It was from the joy of learning to understand my daughter.
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