Autism: What to Know and What Comes Next?

Autism What to Know

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 contains the nuances of an Autism diagnosis.

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Autism Stats

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 (2015) survey claims that 1 in 45 children, between 3 to 17 years of age, are diagnosed with autism.

Autism What to Know

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, much faster than the delegation of resources and public education regarding 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.

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.

While sometimes  unfocused and not aware of his strength, he has never been violent or mean.  He’s always been a very happy, expressive, and loving boy.  Society seems to portray autistic boys as savage and apathetic.  I will never understand why.

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 would not add 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.
Boy Autism what to know

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 I quickly labeled “the angry lap”.

The specific incident that made me realize that he was different from other children stands out in my mind.  After nap time, I heard him quietly playing in his room.  He was a few months shy of his third birthday.

I walked in to his room.  He had carefully lined up every single toy across the floor of his room in a perfect line.  Now, I don’t mean 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. 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 the website will lead you to the twenty-three states that are affiliates. 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 and began 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.   First, they brought him in for an intensive testing session.  Then, they 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 establish an Individualized Education Program (IEP).  His school district placed him in a combined 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 time seems so long ago.  Our son is six and absolutely thriving. The past few years have been a combination of finding some really great resources and simply muddling through.  There have been many wonderful moments over the years: learning to throw a ball, figuring out that he was able to read without being taught, and zipping around on his Radio Flyer scooter.
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However, the absolute best day of my life 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”.  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. His achievements are truly outstanding.  Furthermore, the brother and sister that came after him benefit from our celebration of the little things.

Most of all, I love my son and wouldn’t change a single thing about him or his diagnosis. I will fiercely fight to advocate for a better world that understands and supports autism.


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