Autism: What to Know and What Comes Next
The reason that I wrote “Autism: What to Know and What Comes Next” is because so many people fail to understand what Autism is. Every time I tell someone my son has Autism, they say “Oh, I’m sorry to hear that.” But I’m not even a bit sorry. This is our story.
Update: February 28, 2018
I was completely unaware of the vast world of services, support, and challenges unique to Autism until 2013. Because our son received the diagnosis six weeks before his third birthday, his entire educational path has the nuances of an Autism diagnosis.
The official government statistics, from the Centers for Disease Control and Prevention (CDC), cite one in 68 American children have Autism Spectrum Disorder (ASD). However, a recent survey published in 2015 claims that one out of 45 children between the ages of 3 to 17 receives an autism diagnosis annually.
As a result, the diagnosis of autism spectrum disorder strikes close to home for a growing number of parents, siblings, friends, and family. This number is growing quickly, faster than the delegation of resources and public education about autism. This means that the educational system isn’t always sure what to do with us, and some medical providers are not well versed in our options for therapy and care. The statistics are staggering, and yet the diagnosis of Autism is an enigma to most of the population that does not understand the impact of Autism Spectrum Disorder
How We Knew
Our son was an absolutely beautiful baby. He never slept well, but he was my first son. I attributed the lack of sleep to normal newborn life. As he grew, he hit each milestone slightly behind his peers. Late enough that I would spend nights awake googling, but not so profound that any professional intervened.
He developed a social smile around six months but used it sparingly. He didn’t routinely answer to his name unless shouted or repeated many times.
Around eighteen months, he had developed about fifteen words. Things were looking up. Almost overnight, he went down to three words (mama, go, and no). Until his fifth birthday, he did not add any more than a few words to his repertoire. I hired an American Sign Language tutor. He was able to sign the occasional word, but even there we struggled.
Because of his frustration with his lack of communication, he would scream and throw temper tantrums. He would sometimes run off his aggression around the house in a maneuver that I quickly labeled “the angry lap”.
While sometimes unfocused and unaware of his strength, he has never been violent or unkind. He’s always been a gleeful, expressive, and loving boy. Society seems to portray autistic boys as savage and apathetic, but I will never understand why.
The specific incident that made me realize that he was different from other children stands out in my mind. He was a few months shy of his third birthday. After nap time, I heard him quietly playing in his room.
I walked into his room to scoop him up from wipe the sleep away from his eyes. When I entered, I stood in shock. He had carefully lined up every single toy that he owned in a perfect line across the floor of his room. This was not a couple blocks or some action heroes lined up to battle. Every toy that my son owned stood shoulder to shoulder in a precise 15-foot line across his room. I’ll never forget the look of pride on his face, but I burst into tears because at that moment, I knew.
What Came Next
We contacted our local Help Me Grow. They are not available in each state, but that website will lead you to the twenty-three states that provide similar services. Help Me Grow only works with children until they are 3 years old. Because he was six weeks away from his third birthday, we had to work quickly. He instantly started his in-home evaluation with a variety of specialists. They recommended services for in-home programming and set us up with a service coordinator and service provider.
Finally, they referred us to a local Developmental Pediatrician who was able to get us in before his third birthday. The pediatrician brought him in for an intensive testing session and then called us back for an appointment.
The specialist walked in with a stack full of papers, and a serious look on his face. On that day, our son received the diagnosis of Autism and everything changed.
We walked out with absolutely no idea where to start. We hurried to set up an Individualized Education Program (IEP). His school district placed him in a joint special needs and mainstream preschool program at the start of his birthday.
The Journey Continues
The past few years have been a magical blur. Yet, that diagnosis seems so long ago. Our son is seven-years-old and absolutely thriving in the first grade. He has a best friend in school, two Applied Behavioral Analysis (ABA) providers that help him excel, and a brother and sister who look up to him tremendously.
We have lucked into some helpful resources, but also muddled through until we got it right. There have been many wonderful moments over the years: cheering as he first threw a ball, watching him read without being taught, and zipping around our cul-de-sac on his Radio Flyer scooter.
However, the absolute best moment for me came in the car on the way home from school. I was driving in the minivan, with him sitting in his car seat in the back row. He quietly whispered to me, “Mommy, I love you”. I stopped the cars and sobbed. My heart has never been the same.
While picking him up from Sunday school, a Dad looked over and said: “Don’t you wish they would just be quiet sometimes?” My honest response is, and will always be, “Never”.
He has made me truly appreciate each milestone because each achievement is truly outstanding. Furthermore, the brother and sister that came after him benefit from our celebration of the little things.
I love my son and wouldn’t change a single thing about him or his diagnosis. Until the world changes, I will fiercely fight to advocate for a better world that understands and supports autism.