By Dr. Gary Deel, Ph.D., JD
Faculty Director, School of Business, American Public University
This is the first of a three-part series on coping with autism.
Parents often tell young people how much having their own children will someday change their lives. I can remember hearing that cliché over and over in my teens and twenties, to the point of exhaustion and even mild annoyance.
But you know something? They were right.
When my first son, Carl, was born in 2016, everything changed in ways that my wife and I dreamed of and in one major way that we did not.
Carl arrived five weeks early due to pregnancy complications that could easily have resulted in a catastrophe. But medical wisdom prevailed and he was born at six pounds nine ounces, a happy and healthy child. As it turned out, his premature delivery caused him to be born on my birthday.
I remember joking with my family about being irritated because now I’d never have a birthday of my own again. Everyone would most certainly forget about me now that the baby had usurped my birthday. But of course in reality I was happy to share the special day with my little boy.
Carl was an early walker. He took his first steps at about nine months. Factoring in his premature birth, this meant that he would have actually begun walking at seven to eight months had he gone full-term. Carl was smart and playful, and very affectionate. My wife and I were in love.
The Signs of Autism Emerge in Carl
But when Carl was around 10 to 12 months old, I began to notice some peculiarities about his behavior. His eye contact with us wasn’t frequent or long-lasting. He didn’t appear to respond to his name at all. He seemed not to be interested in social situations with other children. On the internet I found out that these were things a baby should be doing at the age Carl was then.
I have to offer strong warning at this point: be very skeptical about what you read on the internet, especially when it comes to medical diagnoses, symptoms, and treatments.
But during my Ph.D. studies, I was trained as a professional researcher, to scrutinize sources of data and to ensure sufficient credibility before relying on them for wisdom.
So I wasn’t looking at WebMD. I was reviewing pediatric development journals and well-established developmental guidelines published by reputable sources such as the Centers for Disease Control and Prevention (CDC) and the American Academy of Pediatrics (AAP).
There was strong consensus about what infants should and should not be doing at different stages in their development. To me, Carl seemed to be missing the marks. Furthermore, the behaviors that he was displaying seemed consistent with those of autism spectrum disorder (ASD), autism for short.
To Me, Autism Was Something I’d Heard about Only in the News
After several evaluations with pediatric psychologists, the diagnosis of autism was confirmed. Despite my suspicions about the evaluations in the first place, I was nevertheless in shock at the result. To me, autism was something I’d heard about only in the news and something with which I’d had precisely zero experience.
There was no history of autism on either side of the family. I didn’t even know anyone who was autistic. And now, suddenly, the most important person in my life was diagnosed with this disorder; Carl was the child who relied on my wife and me for everything, and whom I would do anything to protect.
It took me a long time and a lot of mental fortitude to come to terms with the situation. As any good parent would do, I committed myself to learning about ASD, what causes it and how it’s managed. I came to learn about the uphill battles that autistic children and their families face. I learned that there is still no cure. I learned that some treatments have shown promise, but not for everyone and not all the time.
The Variability in the Prognosis for Autism Can Be Terrifying
I learned that the variability in the prognosis for autism can be terrifying. Every autistic child is different. Sometimes the condition improves; sometimes it gets worse. So the idea is to do all you can to help these children, and then just cross your fingers and hope for the best. My wife and I are fortunate that Carl’s autism is fairly mild, and he is responding well to treatment. But for every family like ours, there are many others who are not as lucky.
The most agonizing part of the situation for me was the unpredictability. I’m someone with a strong work ethic. It’s has been my experience that most problems in life can be overcome with sufficient hard work, persistence and determination.
Want a better job? Go to school, learn a new trade and spend time improving your resume. Want a better relationship? Put effort into the needs and wants of the person you love, and make compromises for the good of you both. Want better physical health? Go to the gym, make better eating decisions and hold yourself accountable.
Certainly there are exceptions. But most of the success that I’ve had, personally and professionally, is attributable to the grit that I’ve applied to everything I’ve ever set out to do.
With Autism, There Is No Such Informed Expectation of Cause and Effect
But with autism, there is no such informed expectation of cause and effect. Some children improve naturally and “fall off” the autism spectrum over time. Others do so through enormous effort that they and those around them put forth. Still others will live with the challenges of autism their entire life, no matter how determined they or their families are to overcome it.
Such are the circumstances of ASD that we just don’t yet understand. And because no one has figured out why autism exists and how to fix it, I found myself assuming that the problem simply couldn’t be solved. I can’t begin to describe how painful that kind of hopelessness is.
But as any good parent would do, I refused to accept the cards my son had been dealt and resign his fate to chance. I committed myself to thoroughly researching autism, treatments for diagnosed children and strategies to prevent the occurrence of autism in the first place.
In doing so, I began to change my perspective. Instead of looking at autism as an unsolvable problem, I started looking at it as a solvable one, but one which I thought might just require a level of hard work or innovation that had not yet been exerted by those who had attempted it previously. Just because prior researchers hadn’t figured out the causes of autism didn’t mean that it couldn’t be done. It just meant that someone might need to try harder.
Despite the psychological and emotional hardships that come with being the parent of an autistic child, I wrote this series in hopes that it might encourage other parents in similar circumstances not to give up hope.
Infections were unavoidable until Alexander Fleming discovered penicillin in 1928. Polio was incurable until Jonas Salk discovered the vaccine for it in 1953. Mankind has risen to challenges like this before, and we can do it again.
Curing and preventing autism may require an unprecedented amount of effort and grit, but make no mistake: the problem is solvable.
Subsequent articles in this series will discuss what I’ve learned about autism through my studies, including what medical science knows about this condition and its effects. I will also discuss the bleeding edge of medical science working toward cures and preventions for autism, as well as my own thoughts on these various pursuits.
About the Author
Dr. Gary Deel is a Faculty Director with the School of Business at American Public University. He holds a JD in Law and a Ph.D. in Hospitality/Business Management. He teaches human resources and employment law classes for American Public University, the University of Central Florida, Colorado State University and others.