I owe the “weird kid” who ate paste in second grade an apology. I understand now that he wasn’t strange, but had autism. This was a time when autism wasn’t as noticed, not diagnosed, and especially not high-functioning autism, including Asperger’s. I get it now. My son has autism.
Discovering the differences in my son has been process. A long, slow, grueling process. It’s never been easy. I knew something was different when he was six months old. It was something beyond personality. I already had two older children, both boys, with very different personalities. This was different. The problem was, no one wanted to believe me. Not even me. I always brought up concerns at every well-check appointment, but there was always a reasonable explanation why things weren’t quite what I should expect. He was preemie. He is very close in age to my middle child and isn’t given the chance to explore as much. Late talking runs in families and my oldest was a late talker. And more. Much, much more. I didn’t want my son to have issues, so I allowed myself to be convinced. Sort of. This went on until he was almost three years old.
We were at Disney World and someone asked me how old he was. I answered two. And they gave a knowing smile and said; “oh” in that way that means “typical two year old behavior.” It was at that moment it dawned on me that he was turning three next week and some of this behavior should have passed by now.
At his three year well check, I told his doctor I had concerns. There was a problem. I didn’t know what it was, but it WAS something. As I began to get my typical run-a-round, but this time I stood my ground. Literally. I stood up out of my chair and said, “You know me. I don’t come in without a problem. I’m pretty relaxed. Humor me.” I know this so well because I had to say it several times. Our pediatrician was not a bad guy; he had a reputation for being an excellent diagnostician. It’s just our little guy didn’t fit the mold. He did everything late, but he fell in the wide range of acceptable-if just barely-most of the time. He seemed quirky, but it could have just been quirks. He was, and still is, a truly likable child to adults. But, I was his mother. I spent more time with him than anyone and I just knew something was off. I walked out of that appointment with a referral for a hearing test and speech evaluation. That is when it all started to fall into place.
His hearing test came out perfect. He didn’t quite cooperate, but he did enough to know that his hearing had zero flaws. I knew this. His speech came in way behind. I expected this. His pediatrician expected this, as we had surpassed late into concern with his speech. But more importantly, the speech therapist worked with autistic children and saw something in my guy. Something that was familiar. Something that did not fit with the typical-developing child. Something that seemed just a little bit autistic. And she recommended that he not only start speech therapy right away, but that he needed social therapy and a referral to a developmental pediatrician and a pediatric neurologist.
This wasn’t the end, but the beginning. There were lots of evaluations and forms-lots and lots of forms. I was given a lot of “yes, he is” then, “no, he’s not.” Many more, “maybe, it’s hard to tell.” By the same people. By different people. Mostly by therapists as I couldn’t get my son into the developmental pediatrician who could give a definitive answer. I felt like I was part of a Ping-Pong game and my son was the ball. I researched. I read books, by parents who had been there and by doctors. I am no stranger to the special-needs parent blog or message boards. I finally made a decision on my own: my son was autistic. He either had Asperger’s or high-functioning autism.
I continued on the path we were on. No one denied his symptoms, so we kept treating them. There was speech therapy, social therapy, specialized preschool and regular preschool, occupational therapy, etc. I kept waiting for the developmental pediatrician appointment; in our area a wait list can last up 3-4 years. His first year of kindergarten eligibility came up and I decided to hold him a year-he still wasn’t potty-trained. I warned the school with many meetings-I decided to be highly involved at the school with my older children knowing it would benefit my little guy (smartest move I have made yet). I was treated with dignity and my concerns were taken just seriously enough to make sure my guy was put into the inclusionary class that would have a paraprofessional and the special education teacher coming and going. This was truly are saving grace.
At the end of the first week, I was called into the principal’s office. That is never a good feeling, by-the-way. They wanted permission to do an autism evaluation. The aid saw it. The special education teacher saw it. The general education teacher knew she was in over her head with him. From that day, until the end of the evaluation, it was six months.
There was time to get the paperwork processed and to start evaluating. We then had 90 days of observation and testing. We found out he has a very high IQ, no learning disabilities, problems with social language, speech issues, and was “undeniably autistic,” per the licensed school psychologist who does 150+ of these a year. I sat down in the informal meeting before the official meeting (ARD-Admission, Review, & Dismissal), and cried when they told me. It wasn’t tears of grief. It was tears of relief. The behaviorist patted my hand and said, “It feels good when people believe you, doesn’t it?” That is my biggest reassurance I have ever had. It was validation. It also meant we could start to truly help my son.
We switched pediatricians. The new pediatrician looked over my son’s file, heard my concerns and felt the same as our old one until I said, “The problem is general pediatricians aren’t trained in autism and only learn how to screen for low-functioning autism.” I could see him contemplating what I said, and then he agreed. He then asked for the school’s report and said he would get us fast-tracked to the developmental pediatrician. He said he should never side-step a mother’s instinct. He also wrote a medical diagnosis of autism in his file.
The big Ah-Ha moment did not hit me over the head. It came little by little. I knew deep down. Maybe from the time he was born premature, without a sucking reflex, with low blood sugar, and water on his lungs, I knew it was going to be more of a challenge. I didn’t know it was autism, but now I can have him on the right path-to live independently and live a productive life. He is not defective, but different, and I love him all the more.
