Why It Took 10 Years to Diagnose My Son's Autism

4 years ago

Thirteen years ago, I had my first child...my son, Ethan. Like any mom, the one thing I hoped for was a healthy child. By all accounts, he was exactly that. I read all of the books I could get my hands on before he was born, and I really thought I had a firm handle on this parenting thing. At some point during my first year of Mommyhood initiation, I developed an unwavering tenacity to take on whatever obstacles life would deal to me. I had a newfound purpose in life that I had never felt before. A Momma Bear was born.

As life progressed, any moment when I doubted myself would eventually be attributed by me as a weakness; I was an only child. This, by default, made me inexperienced, and I hadn't held many babies in my lifetime. I LOVED them, but I just wasn't blessed with an abundant amount of exposure to kids. When I observed my child objectively, most of the time he seemed just like the rest of the kids, and often times, even better behaved. When there were meltdowns, I would always address them. He was intelligent, funny, quirky and babbled a lot. He didn't give hugs or kisses or say "I love you" but that didn't matter. In my moments of doubt, I was often validated by other parents with statements such as "Oh, boys are much harder to potty train than girls," or "my son does the same thing." Many times, I would say things like "one step forward, three steps back" in his development. He was stubborn, I thought...but he was smart, too!

Because I worked full time, my son was always in the best daycares. I did this in the hopes that a perfect environment would help his behavior. He was kicked out of the first daycare due to delayed potty training, but so was another child. At the new daycare, he struggled in groups, but so did other kids. He was very articulate, and was once chosen as the lead (Santa) character in the daycare holiday program, but refused to take directions and resorted to hiding under tables. This behavior, which was common, caused him to be demoted to a reindeer instead of Santa. Yes, there was always something to deal with, but I didn't see him behaving much different than other high-spirited boys. I started to see these as normal, everyday parenting woes (of a mom with a boy). He was my first child, and no one ever pulled me aside to suggest something was wrong. This is where having an honest sibling could have been helpful, I am sure.

Then my daughter was born. As she developed and easily met her milestones, the light bulb started to go off. Even at four months she was talking and cooing at me. My son didn't do that at her age. So many things came easy to my daughter that my son simply struggled with. She walked at 9 months, he walked at 14 months. She crawled at 5 months, he crawled at 10 months. Still, I received feedback that validated my hopes that nothing was wrong. "See? Girls are just easier than boys," is all I would need to hear to put my worry to rest. I wasn't necessarily in denial, I just didn't have anything to compare my life to.

On my son's first day of kindergarten in August 2005, my husband left us. Our divorce progressed over the course of two years. In school my son began to emerge as highly intelligent, but still had social challenges. He had major struggles in gym class and seemed to be losing much of his large motor coordination. People inferred that perhaps the divorce was to blame for some of my son's social struggles, or the absence of a father. I cried many nights over this notion...and could recall playing four-square with him as a toddler and he did so well. Now, playing catch with him in the backyard would result in him breaking down into tears. Things he used to do well, he just didn't anymore.

I questioned every move I made over the course of his life. I surrounded myself with new friends who listened to my struggles and consoled me. Some of these new friendship circles were families with special needs children. My son turned a corner (again) and made many friends on his own, which brought him out of his shell. Being surrounded by lots of supportive people and having a very sociable sister taught him how to be social as well. We learned how to be the "fun family" and hosted many playdates and sleepovers over the years, and both of my kids began to integrate in the community.

I resigned myself to the possibility that depression over the divorce was a possibility, so both kids began counseling. I wanted to cover all of the bases and take care of both of my kids' emotional health. My daughter benefitted greatly, but eventually, the therapist could no longer reach my son. And as the curriculum in school became harder, his teachers could no longer reach him either. What was my boy struggling with? Why did my pediatrician not test him to tell me what was wrong? Why was he so intelligent but would resort to nonsensical speech to avoid a discussion about feelings? Why was he so sad? Why would he push away from a group during circle time? No matter how much I asked for an intervention at the school, my son's academics and good grades took precedence over his emotional health. The teachers and administrators refused.

Finally in the fifth grade in public school, my son hit a wall. In the first four weeks of school, I knew something was wrong. No homework came home, and he was doing nothing in class. He was getting zeros across the board. My heart sank, and I felt like I had failed him, so I pulled him out of school in October of 2009 and homeschooled. I needed my boy to get well, but I did this while working as a full time, single parent. I knew this was not the long term solution, and this was just a moment in time, and my job was to help him.

His first day of homeschooling, he was so happy and relieved, he immediately responded to the change. I worked hard to make learning fun for him again. Of all people, I was the one person who could reach him, and my daughter became his best friend. During that time, I personally paid for a battery of tests. Fifteen to be exact.

The testing validated his high IQ, but it uncovered a processing delay in math. It also confirmed a diagnosis of ADD (non-hyperactive), depression, and PDD-NOS (pervasive development disorder, not otherwise specified). I didn't know how to treat him, and the lady conducting the testing also had no opinions other than to medicate him, so after doing internet research, I decided to search for an autism specialist. I was reluctant because this would require $400 out of pocket, and the waiting list was long, but I decided to take the plunge and set the appointment. Three months later, in January of 2010, the pediatric neurologist diagnosed my son as "classic Aspergers".

He is back in public school with a full list of supports and services that I drafted in partnership with his online school back in 2010. He is very happy, very social, an excellent writer, and very proud to have become one of the tallest kids in his class. He is also in the starting lineup on the baseball team and has a beautiful swing. The outfielders back up when he comes to the plate.

Looking back at the journey, our life evolved naturally to help my boy thrive. It offered built-in therapies that no therapist could have facilitated during any one-hour, biweekly session. I feel he could not have progressed in many areas of his life without the challenges he faced, and shielding him from those challenges might have yielded very different results. By all means, I wish he could have had an easier road than this, and that I could have found the right professionals to diagnose him sooner. However, his Aspergers became elusive as time went on...the more life experience he had, the more difficult it was to detect.

I love my son, and I am so proud of him. As difficult as this journey was for him, I would be honored to accompany him and do it all over again.

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