When I was in the second grade, the eye doctor said I needed glasses for far-sightedness. This was quite exciting for a seven year old. My mom helped me pick out pretty frames, and I felt special when my teacher, Mr. Smith, asked me to stand up and show the class my new glasses. Of course, it wasn’t long before the novelty wore off. Lucky for me, my eyes corrected themselves, and I no longer needed them after a few years.
Thinking back on the early days of my son’s diagnosis of autism, I am reminded of the phrase, “Hindsight is always 20/20.” My son is almost five now. There is no question that he has autism. The signs that were there when he was 18 months old were so clear from where I stand now. How could I have missed them?
Part of it was, honestly…I was farsighted. Up close, the world was blurry and confusing. It was so much easier to focus on the far-off future, to dream of the progress he would make once he “outgrew” his developmental delay. Still clinging, was I, to a universe that was no longer my reality.
Another reason I missed the signs? Autism is complicated. Really complicated. In fact, the full name of autism is “autism spectrum disorder”, with the “spectrum” referring to the overarching range of symptoms and the continuum of severity, from mild to severe. So autism isn’t just one thing, it can mean many different things depending on the individual. A common saying in the autism community is: “If you’ve met one person with autism, you’ve met…one person with autism.” My husband and I, our friends and family – we all had images of what autism “looked like” based on people we had met or characters in movies or on TV. To us, our son didn’t “look like” them.
The weird thing was my husband and I not only had a hard time picturing what autistic behavior looked like, we had trouble picturing what typical behavior looked like. Many friends had children who were well beyond their toddler years and others had infants. Unfortunately, those who did have children around the same age as our son lived further away, and infrequent visits made it hard to observe and compare any differences in our son’s development.
But even our pediatrician, who sees toddlers all the time, was unsure that our son showed warning signs of autism. She admitted, however, it would be difficult to determine based on a 15-minute check-up. She also said she’s not an expert in autism.
Wait…so, if my pediatrician isn’t the expert in diagnosing autism, who is?
Remember that thing about autism being “complicated”? We learned pretty early on that finding an “autism expert” is not as straightforward as finding a specialist for other disorders and medical conditions. Let’s just say that years later we have a TEAM of experts for our son.
But let’s not get ahead of ourselves. Our first referral by the pediatrician was for services through “Birth-to-Three”, a state agency that assesses developmental delays in children and provides “early intervention” in the home. Their initial assessment would take place at the end of his 18th month and would determine if he was eligible for Birth-to-Three services. If he qualified, an educator from the early intervention team would work with our son in our home, and that person would refer him to the autism specific team if necessary.
The ball was rolling. We were finally going to get some answers.
Two women, Sandy and Marie, arrived at our house the morning of testing – Sandy would test my boy and Marie would interview me.
In typical fashion, my son was completely uncooperative. Sandy put three blocks on his tray and asked him to stack them. “Do this,” she said, as she demonstrated. My son took one block in his tiny fist and brought it close to his eyes for a better look. When Sandy tried to take it back, he screamed and refused to return it. For the next test, she showed him a small stuffed bear, placed the bear in a cup, and then handed the bear to my son. “Put the bear in the cup,” she said. My son grasped the bear tightly and, with a bear in one hand and a block in the other, fussed to get down from his high chair.
Hmm…Things didn’t appear to be going well. “He likes to hold things,” I explained apologetically, as I tried to wrestle the objects out of his hands.
Sandy continued with her tests while Marie began asking me questions about my son’s medical history and development. Some of the questions were from a checklist called the M-CHAT (Modified Checklist for Autism in Toddlers). I found myself struggling for answers.
“Does you child ever use his index finger to point, to ask for something?” Maybe once or twice. “…to indicate interest in something?” Not that I can remember.
“Can your child play properly with small toys?” Well, he probably COULD, he just doesn’t.
“Have you ever wondered if your child is deaf?” Yes. He never responds to his name. But we know he can hear just fine, because he comes running from the other room when the “Elmo’s World” song comes on the TV.
“If you point to a toy across the room, does your child look at it?” and “Does your child look at things you are looking at?” (I thought about all the times I had tried to draw his attention to something really interesting by pointing or gesturing.) No. No, he definitely doesn’t do either of those things.
Some questions were confusing to me. “Does your child try to attract your attention to his own activity?” What the heck does that mean? “Does your child ever bring objects over to you to show you something?” Do toddlers his age DO that? “Does your child look at your face to check your reaction?” I have no idea.
As the interview continued, a wave of frustration hit me. “I have to pay better attention to his behaviors! I’ll have to look for these things from now on!” I thought.
I know now, this is not a test you needed to study for. If I had seen these behaviors, I would have known. Still, in the weeks that followed, my husband and I watched for pointing and waving, shared interest and eye contact – all those things that Marie had asked me about our son’s behavior.
By chance, we were visiting some friends a few hours away in Boston. Their daughter was 15-months old and also had a speech delay. Yet despite the speech delay and the fact that she was several months younger than our boy, she performed all those behaviors we had been looking for in our son…all within the first ten minutes of our arrival! She was so excited to see us, making eye contact and smiling. She ran to the other room and returned with a backpack, which she handed to me and indicated (without words) that she wanted me to open it. Inside was one of her favorite toys. Pointing to it, her face lit up and she checked my reaction to see if I felt the same way about the toy. Still beaming, she handed it to my husband and watched his face, too. Of course, we both gushed and made a huge deal. Squealing with delight, she ran to find more toys to share.
Eyes wide and mouth agape, I glanced at my husband. He had the same exact look on his face. We smiled. THAT is what we had been searching for.
Finally. Like putting on my glasses and seeing things clearly for the first time, I observed the vivid contrast between my little boy and another child his age. The differences in their behavior were so profound, so undeniable. And the fact that this child also had a speech delay put sharper focus on the behaviors.
It was clear our son had more than a speech delay.
As I mentioned in a previous post, my mother-in-law was actually the first person to make the connection between our son’s development and autism. She had given us several websites months before, but we had avoided looking at them for fear of getting “all upset over nothing.” When we got home from Boston, my husband and I decided it was time to check out the information about autism on these sites. Now that the glasses were on, we were determined to find all the clues we could.
I put my son down in the living room and turned on “Elmo’s World”. He started twirling with excitement. “No spinning, Silly Goose!” I said, placing my hands on his shoulders. Laughing, he began his usual laps, running back and forth from the couch to his little chair, occasionally throwing himself into the cushions.
I sat down with my husband at the computer. He clicked on a video about the early warning signs of autism. We watched and let the truth sink in.
Our son had autism.
I looked up from the screen to see my son spinning in circles, his head tilted toward the ceiling, staring at the ceiling fan out of the corner of his eye, smiling. “No spinning,” I tried to say, but I choked on my words. Overwhelmed, I crossed the room and scooped up my little boy, holding him tightly as the tears came. My husband hugged both of us. For several moments we stayed like this until, protesting loudly, my son wriggled and tried to get away from his crazy parents. This made me laugh and broke the mood.
After all, his world hadn’t changed. Only ours had.
Although the truth can be painful, it can also be incredibly freeing. My vision at that moment was in no way 20/20. Things were still very blurry and confusing. But my focus on the present was clear now. The itinerary I had written for my previous universe no longer applied here, and I needed to come up with a new plan for the journey.
There was a lot of work to do.