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How Did We Know?

In recently speaking with other parents who are now on the front-end of the evaluation process, I’ve been asked, “How did you know?” The truth is, I didn’t really know. I knew my child was challenging and difficult. But I didn’t know he was autistic. My husband and I both agreed he was likely ADHD, but we didn’t expect anything other than that. It took the bravery of my youngest sister, and one of my best friends saying, “You know, it sounds like he may be on the spectrum and you  might think about having him evaluated.” I was angry and hurt when I first heard those words. That couldn’t be *my* child, could it? Just because he was difficult and challenging and we spent most days living on “planet Ethan” didn’t mean he had an autism spectrum disorder.

As an infant and young toddler, Ethan was a joy. He was always smiling, always happy, very curious, outgoing, and social. He was never one of those babies who had to be held by just me. He was incredibly smart, and had a crazy vocabulary. Everything seemed to change almost overnight when he turned 3. I was expecting a rough year at 3, after having been through it twice already, but I was unprepared for what we began to deal with. He became defiant, obstinate, and extremely stubborn. His social circle shrank. Lashing out became the norm. His smile began to disappear. I literally counted the days down until his fourth birthday when I expected the same turnaround I’d seen with the other two children. He turned four, and yet if anything, his behavior got worse.

I dreaded kindergarten. Blessedly, a good friend who had known him for a couple of years already was his teacher.  She knew how to work with him. And there were days he just would not cooperate. He refused to sing and dance with his class.  He often pushed back on class work. Homework time was a nightmare.  He was perfectly capable of doing the work, he just didn’t want to. He didn’t want to do anything he felt was a waste of his time, and he seemed to believe a lot of the work was a waste of his time. You couldn’t force him to do anything. He would put the brakes on and the battle would begin. There were frequent tantrums. We chalked most of it up to him being the youngest child, too smart for his own good, and immaturity. His academic grades were high. His behavioral and social grades needed improvement. “That’s just Ethan.” We kept thinking he would grow out of it. First grade was more of the same. His teacher was again amazing. She helped him learn to pull himself out of situations when they were getting overwhelming or when he felt himself getting to red. He had a “12-year-old brain in a six year old body.”  We struggled to  keep him mentally challenged at the same time accommodating his lagging social and emotional skills. The first two weeks of school each year were torture.

The summer before second grade was just hell. I spent all of my time micro-managing, trying to avoid anything that might cause a tantrum, or responding to his tantrums. We were both exhausted by the end of each day. I was mentally, emotionally, and physically drained. The night before school started, he cried for nearly two hours. He didn’t have any friends in his new class. He was going into a new classroom. He was going to be in a combo class. He was stressed out.  As we had come to expect, the first two weeks of school were brutal. After parent/teacher conferences, we made the decision to talk with his pediatrician about his behaviors. ADHD was immediately recognized. And we were referred to a psychiatrist. Towards the end of October, he was officially diagnosed with PDD-NOS (pervasive developmental disorder, not otherwise specified). And here we are.

While I was relieved to finally have something to “blame” his behavior on, I was terrified and heartbroken. We now had an explanation, but that explanation brought darkness with it. There’s no growing out of autism. With therapy and help and lots of work, he will improve – and has improved immensely in less than two years – but he will always be autistic.

How did we know? Honestly, we really didn’t know. We saw the behaviors and dealt with them as best we could, but we were likely living in the land of denial. Do I wish we’d had our eyes opened sooner? Certainly. So many studies show that early intervention makes a huge difference. But I don’t think Ethan’s form of autism presents itself in an obvious manner. It takes seeing other kids maturing, and your child staying where they are socially and emotionally, for it to become obvious. At least that has been our experience. We are where we are. He  is diagnosed. He does have help. He does have an IEP at school. We are vigilant. We have the power of awareness now. And we will do everything we possibly can to help our son be successful – his version of success, no matter what that might be – in his life.

One thought on “How Did We Know?

  1. Amen! My son’s issues are different, but we’re just now (he’s 10) coming to the realization that this might be bigger than we thought. It’s like the old cliche about the frog in boiling water. You get used to it, you adapt, etc. Then something happens to make you realize what it looks like from the outside. It rocks your world, but it also forces you to take action. And that’s a good thing.

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