Loving Dad Shares Ways Autism Has Evolved Over Time
When I began to write my book Be Strong, Be Tough, Be Smart some years back, I was amazed at how far the field of autism had come since my son was diagnosed more than 30 years ago. The main reason for the advance was the availability of information—more specifically, the Internet. Sure, 30 years have certainly allowed for an overall advance in knowledge, based on study after study and the good work of good people, but what really moved me were memories of the bewilderment, as well as the hunger for knowledge that I experienced after Denny’s initial diagnoses.
“Yep, we’re pretty sure it’s autism, he’s got all the classic symptoms,” they told my wife and me in 1983. Notice how it wasn’t even called autism spectrum disorder (ASD) back then. I don’t know about those working in the field of psychology or special education, but to the rest of us average Joes, there seemed to be only two flavors available: autism and Asperger’s syndrome. No spectrums, no varieties, no continuums.
The stigma attached to the word autism was stronger in past decades. This stigma stemmed from ignorance, which stemmed from fear, which stemmed from a lack of knowledge. I came across so many parents and families back in the 1980s who seemed to cling to the notion that somehow Asperger’s syndrome implied a “not-as-bad” diagnosis, and they would bend reality as much as they could to fit their children into the Asperger’s model. It was obvious that some found it difficult to even utter the word autistic when talking about their children. As most of us realize, each child is unique and there are too many variables to consider before assuming one is better than the other. For example, my Denny was a child with an undisputed diagnosis of autism. I wasn’t afraid to say it then and I’m not afraid to say it now. Why? One, simply because it is what it is, and two, because Denny is living proof that a title does not define the child or the man. Growth and success come in many sizes, shapes…and diagnoses. Thankfully, with the availability of information, society has overcome many of these stigmas. With an almost endless amount of research articles, therapies, and opinions available online and elsewhere, we have learned enough to overcome our initial fears about autism, and the stigma has faded through time. OK, that’s great, but you know, nothing is ever that simple. Now we have a new problem…
The new problem is what many term as TMI—too much information! With autism and other related conditions, we’ve surpassed the proverbial threshold of the quest for knowledge and replaced it with enough viewpoints, sentiments, and concepts to make your head spin. Yes, we can all agree that information is good, but I truly believe we’ve reached a saturation point. Too many viewpoints and opinions will almost always lead to contradiction and discord, neither of which is of any use to families raising a child with autism. Yes, on the larger scale of things, a bit of constructive dialogue and controversy among professionals can be good for the betterment of the field. However, caregivers need and deserve practical, uncomplicated information and guidance. In today’s world, it is often difficult for them to discern what the best course of action might be in terms of catering to the specific needs of their particular child. In the book, Be Strong, Be Tough, Be Smart, I strive to make this point very clear. While affirming the importance of relying on the advice of professionals, I iterate that it is equally important for you to trust your own instincts and strive to identify and understand your child’s uniqueness and quirks as you muddle your way through the endless array of opinions and information. I go on to explain how a parent can then draw from the extremely valuable information they’ve identified to help their child in a simple, direct manner—no controversy, no confusion. Half of the “identify and understand” equation is based on intuition, and the other half is just good old-fashioned dedication to the task…and the task is made of simple things that are coherent and easy to relate to, like time, effort, and keen observation.
There’s a motto we relied upon throughout Denny’s inspirational journey toward adulthood: “Be strong, be tough, and be smart.” It is a simple but powerful message to all those who are dealing with the heartaches and the triumphs that come along with championing a child with autism.
Denny is now 33 years old. He holds a PhD in engineering physics and works as a research scientist in the field of space science with over 30 publications currently under his belt.
This article was featured in Issue 66 – Finding Calm and Balance