I did not expect a 16 page report. As I sat at the small corner desk in our bedroom, I watched out the window as my children raced in the backyard on a sun-filled fall afternoon. Could I have written 16 pages on my six year old daughter? The psychologist did so after just two meetings with her. Would anything I write about her or her sisters ever carry the gravity that this report would? Surely not; the California public school system would see this report and label her until she left high school: autistic.
The pages were scanned slightly ascue in a typeface that looked like it came from a classic typewriter. I read each page slowly, backtracking and making notes in the margins. If I approach this like a work or study I thought, maybe I’ll be able to parse this. Phrases and words leaped off the page, my notes unable to contain the jarring impact. “Deficient range of intellectual ability” was the phrase that I couldn’t reconcile. That phrase did not fit my daughter, the bright young girl whom I watched in amazement build structures and grasp basic algebra as if it were an after thought.
Regardless of my inability to reconcile some of the test results with my own experience, the report was thorough and well done. The psychologist had taken great care in preparing the report, commenting on the smallest minutiae beyond the ADOS. The report was a required stepping stone into figuring out a course of action for not only Eve, but also her twin sister Bell, with whom their teachers also suspected of being autistic and would be the next to be evaluated.
While the report was required by the school district to determine an education plan and likely speech therapy, the road to get there was neither short nor smooth.
“They’re little girls, they’ll grow out of it”
The report was a relief, an outcome hard fought by my wife Monica whom advocated at great length for the twins for a number of years against the general opposition of the outside world. School officials and doctors alike attributed the behavior to the stereotype of them being shy little girls. The common phrase used by many of those people sounded like nails on a chalkboard: “they’re little girls, they’ll grow out of it”.
To Monica the situation was clear that this was simply not the case from an early age. Socially they struggled the most in common situations at a grocery store or around children their own age. Loud noises were of great pain, requiring ear protection that you’d commonly see on a construction site. As they grew older, they would isolate themselves from in small tents in our home. “I need a break to escape the world Dad,” Eve would say. “Just for a while, we’ll be back,” Bell would continue.
Our own research would reveal similar issues within the science of diagnosis. Girls were often diagnosed two years later than their male counterpart, and a wide range of issues with outlined in studying autism spectrum disorder had been covered in the 2015 piece The Lost Girls.
“It’s not impacting their education, so it’s not a problem”
Yet I found myself in denial struggling to reconcile the research, my own observations, and my feelings as a father. My denial was grounded in what would show up in the very same report that noted a “deficient range of intellectual ability”: she didn’t appear deficient once you turned her loose on problems. The conclusion in the report was that her intellectual function was highly uneven on the tests.
My denial was firmly held on that intelligence which I often regaled to friends in humerous stories of Eve and Bell’s problem solving ability at early ages. From their use of sticks to flip deadbolt locks open at a year and a half old, to sitting next to windows to look for smudges on tablet screens to unlock, I believed all would be fine. I blindly ignored the repetitive movements, the need for strict adherence to routines that would result in entirely lost days when those routines were broken, the lacking eye contact.
I choose to see what I wanted to see and I spoke to no one about it. Had it not been for Monica, I would have stayed grounded in my silent denial. It wasn’t good for the girls, it wasn’t good for Monica, and it was tearing me apart inside.
That observed intelligence that lead to my incorrectly rooted position turned out to be precursor to many others brushing off the twins in other situations. The prime example of this bias was after an initial assessment by a school district psychologist. Monica and I were handed two sheets of paper with a grid of random shapes.
“Your twins copied those shapes,” she said. “Kids that age aren’t supposed to be able to do that with that kind of accuracy.”
They would further point out that they could count, they could do math, they knew their letters, they could read basic words. Their condition wasn’t impacting their education and the social issues would resolve themselves as they grew older we were told.
We chose not to wait to find out.
Armed with the knowledge that we would have to go to the county for an assessment for any type of potential help, we planned for the future. Monica, a scientist by trade, read every study she could get her hands on and would apply findings. We choose to move the twins to a neighboring public school district where they had immersive language programs for Spanish and Mandarin. We taught them social queues and skills to help them adapt to the outside world (the report would point this out, noting that “social skills have improved, but still seem stilted at times”).
Right or wrong, we took action. We chose not to hide them from the world, but to shower them in what the world had to offer. Time will tell us if these were the right things to do.
While I could write eloquent prose that such actions have resulted in a turnaround as they finish kindergarten, that everything is back to normal (whatever that term means), I cannot. The reality is very much different.
Most days are a struggle. The mornings are heartbreaking, knowing that the school drop off will be anything but simple. Have you ever had your children run off school grounds, dodging teachers and administrators because the morning transition was something they couldn’t handle? Now imagine that with twins going two different directions.
On the very worst days after school is more terrifying. The perfect clarity of your six year old daughter, her speech unimpeded and in a lowly depressed tone that no six year old should have as she without blinking states “the world is pointless and means nothing” will chill you to your very core. They’ll hide in small cloth tents in our house, watching films on their tablet or drawing, spending the rest of the day hidden to escape. The nihilism fades hours later, returning to regular order.
The struggle is worth it. They enjoy the challenge of learning and their Spanish grows better every day. They have friends with whom they converse and play, and they make new friends at the park more easily now than ever before. They start speech therapy soon, the result of Monica writing letters and us sitting in meetings and convincing administrators to accept the results of report. Their teachers are helpful and understanding, putting the kids at ease as best they can for those hard transitions. “We enjoy the challenge. They make it well worth the extra work,” her teacher recently wrote to my wife.
Acceptance, no sorrow required
Eve and Bell make me laugh and smile every day. I watch their big sister Alli teach them the piano and their joy explode through music. I see Monica teach them science through experiments and see their wonder looking through a microscope. I see their deep empathy for those in pain and I see their explosive anger when things in the world are not fair.
My twins are on the autism spectrum. My silence is shattered, my denial long since past. I no longer fret on the term, but instead seek to understand their viewpoint in the world.
On the days when the storm clouds grow, when they slump out of their classroom for reason unknown, when they will not speak, I hold them with reckless abandon and I love them.
“Thanks Dad. Sometimes a hug makes me remember it’s okay.”
There are simply too many autism support groups and other services available to list (which is wonderful). A start point is Autism Speaks Resource Guide, but if you need assistance do search for local assistance regardless of where you are located. You are not alone.