Part One: The Signs
When I was pregnant, I had only one hope for my son. I prayed that he would not be mentally disabled. Having grown up with a family member that required life-long care because of a mental disability, I knew the struggles and sacrifices that came with raising such a child. You can make the best of any difficult situation, but I desperately wanted a better quality of life for both of us.
Following a traumatic birth and ten days in the NICU, I took home what appeared to be a happy, neurotypical little boy. Once he was off oxygen and cortisol (he had hypoglycemia), he seemed to thrive and hit all the normal milestones. In fact, he was one of those giant babies that garnered all sorts of inappropriate comments about his size and mine.
Just short of his second birthday, my abuelo died. While I sat at the kitchen table trying to book plane tickets for the funeral, my son came over and insisted he needed to play with the computer. I said no, and put him down. He in turn, went over to the kitchen drawer, grabbed a handful of silverware, threw them down the short flight of stairs into the family room, and waited for me to pick up the utensils. The second I got up, he was on the computer.
My 22-month-old had formed a plan and executed it. I was both horrified and proud all at the same time.
But around the age of two and a half, my son went from being an average toddler to being a child who lined up toys (the daycare workers joked that his OCD was cute.) and couldn’t peacefully play with other kids. When he reached three, his tantrums became more violent to where he was knocking down complete train sets in seconds and trashing a room full of toys for no apparent reason. He also hit me and other children regularly. But I didn’t worry, figuring he was just a stubborn and overbearing child (that personality also runs in the family). Because he was verbal–too verbal–I thought he was okay though it was surprisingly that he was able to use three syllable words appropriately in context.
By the age of three and a half, the tantrums were a huge problem for his daycare. He threw chairs, hit other children, and knocked over bookcases. His mind would get stuck on things and he would literally go on about the same thing (whether it be a toy or going to see trains) for hours. He also insisted that one particular chair at daycare was his and if anyone else wanted to sit in it, he’d be violent. No amount of timeouts or consequences by both daycare and myself, made any difference. At one point I actually packed up all his toys and had his father take them to his house. Still, my son continued to act out.
I switched daycares hoping that would help. But the violence continued, which meant my son was constantly being sent home and I had to leave work early using up all my vacation and sick time. On one of those days when I came to pick him up, I watched him for a while. He didn’t play with or even talk to other children. He couldn’t pedal on a tricycle and when I asked him what was wrong he said, “Mommy, I’m lonely.”
I cried when he said that. Having been a child that was an outcast and was never accepted (by even my own family), I could empathize with his pain. Holding him until he hit me in the face, I tried to comfort him and tell him that he was loved. But my son didn’t hear me. His mind was in a far away place and he was waiting for me to come get him and bring him home.
By four-years-old, the situation had escalated to where I felt that I was mentally at a breaking point. Between the stress of trying not to lose my job and searching for answers, I was at a loss. I had no idea what was wrong with this child. Then my aunt passed through town on her vacation and observed my son’s behavior. When she was back home and I was sobbing on the phone that I didn’t know what to do, she said simply that something wrong and this wasn’t normal behavior. She never used the word autism, but she was very clear that his repetitive behavior and violence toward me, was not the behavior of an average child. My son needed help and potentially even medication.
If I’m being honest with myself, I knew when he was three that something wasn’t right. I took him on a trip where we visited a boyfriend’s family. My son acted strangely, following another little boy around (who I’m positive has Asperger’s too), and obsessing so much that I was embarrassed for both of us. But my only frame of reference for autism was non-verbal kids who very much appeared to be on the spectrum, so it never crossed my mind that my son might actually be suffering from the same disease.
Having finally heard from someone who knew more than I did, that there was in fact a real problem, I set out on a quest to get my son a diagnosis.