For Autism Awareness Day, I am sharing the introductory narrative to Chapter 1 in my book, Conversations About Autism.
The first chapter is titled Autism Awareness: What do families want you to know?
Autism awareness first requires a little understanding about what autism actually is. Awareness, however, involves so much more than that. According to the Centers for Disease Control and Prevention, approximately one in fifty-nine children has autism. With that many children on the spectrum, every one of us has probably encountered at least one child or adult with autism, whether or not we know it! While you may not have recognized that the behaviors you observed were symptoms of autism, you probably noticed something unique about that person.
An online search of the question, “What is autism?” might be helpful, but some simple background information might be enough to help you get started. The official diagnostic term “autism spectrum disorder” is often shortened to “autism” or “ASD.” Sometimes people with autism are referred to as being “on the spectrum.” People not on the spectrum may be referred to as “neurotypical.” These are all terms you will see in this book.
Before 2013, there were various other categories under the umbrella of the autism spectrum. The most familiar of these terms is Asperger syndrome. These classifications no longer exist as separate diagnoses. Individuals who were once diagnosed with Asperger syndrome are now considered to have autism spectrum disorder. Some of those who were originally diagnosed with Asperger syndrome still embrace that term, as you will find throughout the book.
The clinical definition of autism spectrum disorder can be found on the Autism Speaks website listed in the resource appendix at the end of this book. Here is a simplified version: As the word “spectrum” indicates, people with autism display a wide range of symptoms. These symptoms might include any of the following to varying degrees: poor communication and social skills, narrow interests that are very focused, difficulty making eye contact, and limited repetitive patterns of behavior. Throughout the book, you will learn more about these topics.
Now in 2019, the community of people who live with autism, a community that includes both individuals on the spectrum and the parents and family members of people with autism, is still grappling with what autism awareness means in terms of appropriate language. There are many who believe that people-first language is important because an individual is not defined by his or her disability. In discussions about their children, these parents are very precise in their language, saying “child with autism” rather than “an autistic child.” As an educator, I was trained to use person-first language, and it became central to my way of speaking to say the word “child” first, which I continue to do.
There is also a different perspective, which leans toward identity-first language. There are individuals who prefer that people use the word “autistic” to describe themselves and others on the spectrum, as in, “I am an autistic man” or simply, “I am an autistic.” Some of these people believe that their autism is an important contributing factor to who they are, to how their strengths have emerged, and to what they can offer society.
As an educator, as a person, I have tried to keep abreast of politically correct or socially acceptable language when talking about persons who belong to any group. However, it can be difficult to find language that all agree upon and that is not offensive to some individuals. One of my early readers suggested that I change some quotes that used identity-first language. I did not do that. I have chosen, instead, to keep the words and voice of each person. As you read this and other chapters in this book, please be aware of the differences in perspective. Please understand that each of the contributors to this book may choose different language from what you use. That is okay.
There is more to autism awareness than definitions and language. I was raised in an era and community in which I encountered very few people with special needs; therefore, I did not have the opportunity to gain insight into my own reactions or to learn how to respond comfortably to people who were not like myself. I was never taught at home or in school how to act or what to say if I did meet someone who was “different.” Several parents with whom I spoke shared their belief that children in today’s public schools are, for the most part, open to and accepting of children who are different from themselves.
As an educator, I could walk through my school building and comfortably smile at and welcome all of the children I saw in the halls or my classroom. In the mall or the grocery store, however, I must admit that, at times, I am still uncertain when I encounter people with a disability. Do I try to make eye contact and smile, my normal reaction to people I pass, or will they think I’m staring? Do I pretend that I don’t notice that stranger in the store who is trying to complete her shopping with a child in meltdown mode? Or do I offer to carry the package or push the cart to the car so the parent can support the child? I’ve tried both. The answer to the offer of help was, “No thanks.” What, if anything, should I say to the individual grumbling in line behind the child melting down? Or to the individual in church who makes negative comments to the parents of an active child seated in a nearby pew? Then there’s the middle-aged man who walks in my subdivision, seldom looking from side to side, who stops awkwardly in the middle of the sidewalk, blocking the path of an oncoming walker. What do I say to people who complain about how uncomfortable they are when they encounter this man?
As I have had conversations about autism with people throughout this project, I have come to realize that, while I thought I was somewhat “aware” of autism before I began this book, there is far more to autism awareness than recognizing the logo of a puzzle piece seen on social media throughout the month of April, Autism Awareness month. There is certainly far more than knowing the details of the diagnostic criteria. I am wondering exactly what “Autism Awareness” means. What responsibilities does it entail on my part? I have so many questions to which I do not have the answers. After listening to the people who shared their lives with me, I am reconsidering some of my own thinking and terminology.
Now, here are firsthand accounts of many experiences that I imagine will open your minds and hearts, just as they did mine. Included in the stories, you will hear the voices of parents who worry about the perception of others and ache at the lack of respect shown to their child. You will learn about parents who have felt judged and parents who have learned to tune out any perceived judgment. You will also hear the perspective of a young adult on the spectrum who shared what he wants people to know about autism.