I remember going out for ice cream with my sister one night, right around the time of my son Evan’s autism diagnosis. The boys were in bed, my husband was at home with them, and I needed so badly to escape for an hour. It was a warm enough evening to sit outside, and as we sat on a bench enjoying our ice cream, I watched a few families with young children doing the same. We were on a sidewalk right next to a busy road, and these parents looked so relaxed and happy while their children played nicely near them. I remember saying to my sister, “I can’t envision a time when Evan will be trustworthy enough to stay near us in a situation like this, so that I could relax like those parents.”
Ever since Evan learned how to walk, he began to run and hadn’t stopped. You could look away for a split second and he was gone. And yes, that actually happened many times. One time at a very big family event, I needed a breather for a few minutes and left him under the careful watch of my mom and sister, then saw from across the room that they were frantically looking for him. Sure enough, they had looked away for a moment, and he had instantly disappeared. Immediately thinking back to the automatic doors in the lobby which led right to the parking lot, we raced there with pounding hearts. Thankfully, we discovered that he had gone running to look for a picture of a stop sign in the building that he had noticed earlier, which is where we found him.
Not only was his disappearing act physically exhausting and incredibly intense, but it was also heartbreaking for me that other children had the desire to stay near their parents, while mine seemed to have no interest in being close to me. He only wanted to get anywhere other than where he currently was.
Evan’s running (“elopement risk,” as his teacher later called it) was perhaps the most likely of his behaviors to bring me to tears, but it was not the only one. His way of making it impossible to move his body if he didn’t want to do so was right up there. There was also his habit of spotting a sliding door a mile away, and opening and closing it incessantly until he was ripped away. There was his obsession with letters of the alphabet: he would take almost any toy in our house (toy car tracks, play kitchen utensils, you name it) and find the shape of a letter somewhere in it, rather than playing with it in the “typical” ways. These perseverations (obsessions and repetitive behaviors), odd play habits, and his “scripting” (word-for-word recitation) of lines from his favorite TV shows all had me in desperation, wondering if he would ever fully join the world around him or behave like his peers.
Shortly after we received the diagnosis from our developmental pediatrician, we knew we had to pull Evan out of his private preschool. It was a sad realization, because we had grown to love the teachers and the school atmosphere, but it was the right choice for him at that time. He simply wasn’t able to function in that type of classroom setting. He wasn’t joining his classmates in group activities and he grew unhealthily attached to only two or three toys, with which he mostly played alone in the corner of the classroom.
We learned from our doctor and our research that children like him often benefit from intensive Applied Behavior Analysis (ABA) therapy, so we enrolled him in a special education ABA-based preschool program in our public school system. We were thrilled when his new teacher told us that he seemed to be an ideal candidate for ABA and had positively responded to behavioral modifications, even within a few days of starting. This turned out to be exactly what he needed at the time.
We could see for ourselves just how quickly he was responding: at the school’s request for us to send him to school with a backpack, we had laughed and said, “Good luck getting him to wear it.” Well, we couldn’t believe our eyes when we saw him after his very first day wearing his backpack to come home. We knew then that good things were to come.
In the three years since that time, Evan has progressed tremendously, requiring less support and a much less restrictive educational setting with each year of school. To our amazement, his language and communication blossomed, his perseverations and scripting became less noticeable, and he became more interested in socializing with his peers. This is not to say that he doesn’t continue to struggle in all of these areas, but the progress has been incredible. Last year he began spending a portion of each day in a private, mainstream preschool as a supplement to his special education program. Currently he is in a Kindergarten general education class, with pretty minimal supports in place (speech, behavior, and social skills).
What I wish I had known three years ago is just how much better it would get in such a short time. As Evan learned to access the world around him, his gifts and beautiful mind have become accessible to everyone surrounding him. He has the most incredible memory for details, a brilliance that we had always seen hiding beneath his communication difficulties, a wonderful love and concern for others, and a delightful sense of humor. He is warm and affectionate much of the time, and he is able to bond with people in a way that he hadn’t mastered before, which alleviates a fear that we had for him ever finding a partner with whom to share his life. He is unrecognizable in almost every way from the 2-year-old that he used to be, with the exception of the sparkle in his eye and amazing smile that we’ve cherished in him since he was a baby.
And he no longer runs. We still forget sometimes that we don’t need to be on constant alert of all possible exit routes. These days, if he is suddenly out of our sight, we frantically look around and usually find him right by our sides. The relief and gratitude I feel about this alone is enough to bring tears of joy to my eyes. The fact that we can relax just a little bit allows us to appreciate everything wonderful about him even more.
I know that we are truly fortunate in how significantly Evan has been able to progress in so many areas, and that many families will not experience such drastic growth. Nonetheless, I believe that it will get easier for these families as well. With time, you will come to know intimately the ins and outs of your particular situation and the most effective ways to handle things. Through trial and error, you will learn to accommodate for certain behaviors or difficulties that present themselves repeatedly, and you will understand what works best for your child.
Just when you gain confidence in handling a behavior, something will change, bumps will appear in the road (a new classroom at school, a new season’s clothing, a new baby in the family, or simply a new development in your child), and you will briefly be thrown for a loop. But with each experience that you survive (and you will survive), you become more of an expert on your child, and it all gets easier. It may never seem to be quite as easy as it is for those around you, but the more you learn about your child and the more you grow personally from these experiences, the more relaxed and confident you will be.
This is an excerpt from Shira Roth’s new book, “What I Wish I Had Known: Reflections from a Mom on an Autism Journey.”