By Dr. Gary L. Deel, Ph.D., J.D.
Faculty Director, Wallace E. Boston School of Business, American Public University
APU offers online bachelor’s and master’s degrees in psychology and an online associate degree in early childhood care and education. These programs are designed to educate students about the causes and conditions of developmental disorders like autism. Also, they help to prepare students for research and support services careers in these fields.
In previous articles, I’ve written about the circumstances of autism spectrum disorder. I discussed my personal familiarity with autism through the diagnosis of my son Carl. For readers who don’t already have a basic understanding of what autism is and how it affects those who are diagnosed with the condition, I refer you to these articles and to helpful sites such as Autism Speaks.
Discovering My Son’s Autism
Carl is now five years old and, as I’ll explain, is doing pretty well, all things considered. But I remember the original discovery of his situation as if it were yesterday.
He was roughly eight to nine months old when I first began noticing some things that didn’t seem right to me. Carl was not making a great deal of eye contact. He was not responding to his name. He did not appear to be as socially aware as other babies in his age group.
I was the first to notice it. And when I raised the topic of my concerns with friends and family, many were reluctant to see what I saw and all too quick to comfort and reassure me that Carl was just fine.
I don’t blame them. They meant what they said and they said it out of kindness. They’d pat me on the back and remind me that every baby is different and that I shouldn’t worry about Carl’s progress and development.
But worry I did. Despite my best efforts, I couldn’t help but observe and read, and research, and then observe some more.
And what I saw gave me little comfort. Finally, when Carl was about 15 months old, my wife and I decided to have him formally evaluated for developmental disorders. This is about the earliest age at which developmental psychologists are willing to diagnose autism in infants.
No one would have been happier than I to have been wrong about my suspicions. But it didn’t take long for the doctor to give us her opinion. Carl was autistic.
I was terrified. Carl’s diagnosis was one of the most frightening and unnerving experiences of my life. What does one do when one learns that a child has a significant developmental disorder for which there is no cure, and for which the outlook is uncertain and different for each individual? Where does a parent even begin? How do you move forward?
The answer, I discovered from experience, is one step at a time.
Why Early Intervention for Carl Was Important
Through my research into autism prior to Carl’s diagnosis, I had learned that early intervention for children on the autism spectrum is critical to promoting healthy development and increases the likelihood that such individuals will grow to become capable of leading independent, dignified lives as adults. So as frightened as I was at the time Carl was diagnosed, I knew there was no time to waste.
So my wife and I searched in our area for Applied Behavior Analysis (ABA) service providers, the gold standard of treatment for children with autism. And after what seemed like countless emails, phone calls, and clinic visits, we finally found a service that was able to provide in-home and in-school therapy for Carl. His therapists now work with him on all manner of development — including communication and social skills — several hours a day, five days a week.
Carl’s ABA therapists have been with him for almost four years, and whenever I talk about his ABA therapy with friends or colleagues I’m often asked whether the ABA therapy has actually made a difference. In other words, has it helped Carl to develop? And my answer, as a social scientist, is always the same: Unfortunately, there is no way to be scientifically certain.
Mathematically, Carl is a sample size of n=1. If we had 1,000 identical Carls, we could expose 500 of them to ABA therapy and keep the other 500 as a control group. Then we might be able to say — scientifically — whether and how much ABA helps the population of Carls. But when there is only one individual being assessed, it is impossible to say empirically what effects are taking place.
However, as a father, I can absolutely say that Carl’s therapists provide a lot of assistance working with him. They take the time to work with behavior modifications through incentives and classical conditioning. They carefully monitor Carl’s progress with painstaking data collection. They revise Carl’s goals over time as he achieves milestones. And they genuinely care about his progress and success.
So do I think it has helped? Absolutely. There’s no doubt in my mind. And the data on early intervention supports my intuitions.
Helping a Child with Autism Requires Proactive Parents
So why am I sharing these personal details? Because I know there are parents out there with children who may need the same assistance that has benefited Carl. I know what it’s like to be a parent who has concerns about his child’s development. I know how terrifying the possibility of a diagnosis like autism can be.
It can be scary enough to simply not want to know. And so some parents may be tempted to avoid an evaluation for fear of bad news.
But in these cases, the stakes are high and the costs of waiting could be significantly detrimental to the child involved. So as frightening as these situations may be, it is far better — for the child and for everyone else — if parents are proactive about having their child evaluated by a pediatric development professional. And if autism or another developmental disorder is discovered, it is imperative that early intervention steps are taken promptly so that the child can receive the help he or she needs to reach their fullest potential.
Winston Churchill once said, “If you’re going through hell, keep going.” There is no doubt that discovering the child you love has an incurable developmental disorder is a hellacious rollercoaster of emotions and anxiety. But we owe it to our children to have the courage to press forward, and to take the difficult steps that are necessary for their benefit.
So if you or someone you know is in such a situation, I hope you’ll consider some of the excellent resources available from organizations like Autism Speaks and Next for Autism. And of course, speak with your child’s doctor if you have concerns. Remember, every harrowing journey begins with a single step. And our kids are counting on us to pull through for them.
About the Author
Dr. Gary Deel is a Faculty Director with the Wallace E. Boston School of Business at American Public University. He holds a J.D. in Law and a Ph.D. in Hospitality/Business Management. Gary teaches human resources and employment law classes for American Public University, the University of Central Florida, Colorado State University and others.