Although Alex was not officially diagnosed until shortly after he turned four years old, we had been suspicious for about a year earlier that he had autism. When we took him for his annual physical exam at age three, we shared our concerns about his language and toilet training delays with his pediatrician, who assured us that Alex was very smart and that his delays were solely because he was a boy. Indeed, he did not meet any of the criteria for early diagnosis of autism: not smiling by age six months; not babbling, pointing, or using other gestures by age twelve months; not using single words by sixteen months, not using two-word phrases by twenty-four months; or having a regression in development with any loss of language or social skills. Alex could do all of these skills at the prescribed times and never had a regression, just a plateau where he didn’t seem to make much progress. While he couldn’t do some of these skills well, he could, nonetheless, do them. When we took him to the pediatrician a year later with the same concerns that Alex was not potty trained, nor could he speak well, his doctor finally understood our worries. He asked me what I thought the problem was, and without hesitation, I told him, “I think it’s autism.” That began our journey of evaluations that proved my maternal instinct correct.
Because Alex is our first and only child, we didn’t realize how different he was from other children. In addition, he didn’t have playmates his age, so we couldn’t compare him to his peers who were developing typically. The few times that he was around children his age, he interacted appropriately, even though he tended to be more reserved than others, which we attributed to shyness. Moreover, we thought that some of his unusual interests, such as looking at books without pictures and watching the Weather Channel, were the result of spending so much time with adults because he was with Ed and/or me nearly every waking minute of the day. Even some aspects which we thought were positive were perhaps early signs of autism. For example, Alex’s head measurements every time he went to the pediatrician were in the 90th percentiles. His head never seemed that large to us, and now that he’s nearly fully grown, his head is average in size. When he was little, his doctor used to tell us jokingly that Alex’s head was big because he had more brains than other kids his age did. Several years later, I would read that children with autism often have larger than normal head size. In addition, he has always been remarkably healthy, which we have considered a blessing. Other than projectile vomiting when he was a baby, which was likely an allergic reaction to milk before we knew he didn’t tolerate milk proteins well, he was never sick. Like his seemingly very healthy mother, Alex likely has autoimmune issues, another concern related to autism. Before Alex’s diagnosis of autism, which led me on a quest to research the condition, I had no idea how much autism impacted physical as well as behavioral aspects of development and didn’t recognize some of these details as related to the disorder.
In watching the videos of Alex’s early years objectively, we can now see some of the early red flags warning that he had autism. His sensory defensiveness was evident as he was bothered by loud noises, covering his ears and even crying when startled by sounds. When drinking from his baby bottle, he would tilt his head back and stare into the light bulb in the lamp located next to the chair where we fed him. He also had an uncertainty in his walk, which was probably related to his balance and sensory problems, tilting his head and walking on his toes, a common characteristic of children with autism. While he would notice objects and try to call our attention to them, he would do this by touching things with his hand flattened instead of pointing with one finger, or he would take our hands and have us touch the object. As a baby he would amuse himself by waving his hands in the air; this later took the form of stereotypical autism hand flapping, where he would get excited and look like a baby bird trying to take flight. As a toddler, he was difficult to carry because he wouldn’t wrap his legs around the person carrying him, as most children do. He would wrap his arms around our necks to help with our carrying him, but we had to hold his legs because transporting him was like lugging a sack of potatoes. Perhaps one of the more unusual early behaviors we overlooked as problematic was his need to line up people when they came to visit. He would take each person by the hand, leading everyone into the kitchen, and one by one, put people in a line, as if he were a photographer lining up subjects to take their picture. We thought this was amusing, and we didn’t stop to realize that lining up things is often associated with autism. I suspect that he needed to have everyone in one place in an orderly fashion so that he could keep track of them at least momentarily. Although early intervention is helpful for children with developmental delays, I often think that not knowing Alex had autism the first few years was a blessing because we enjoyed him, quirky behavior and all, and we enjoyed those early innocent days, not worried about what we needed to do. We still savor those precious times and are thankful that once again we spend more time enjoying him and less time fretting over him.
“Tell us, when will all this happen? What sign will show us that these things are about to be fulfilled?” Mark 13:4