“What is happening in his head, ooh, I wish I knew, I wish I knew”
— from “Go To The Mirror!”, by Pete Townshend
In January 2003, my wife Carissa was pregnant with our last child. At the time, I remember thinking how little I cared about the triviality of the baby’s gender, and only caring about having a healthy baby. This was in part due to my profession as a pediatrician and in part due to being an older parent at 40. Both experiences had me realize that so many things could go wrong, I never did take for granted the gift of having a healthy, happy, “typical” child. My son was delivered via elective c-section, and, after having respiratory difficulties that resolved within 24 hours of life, seemed perfectly healthy.
His first year of life was very uneventful, but in hindsite there were some red flags that now come to mind. First, unlike most infants, we had to go to great lengths getting him to sleep. I recall many nights holding him in my arms and pacing back and forth in his bedroom for over an hour trying to get him to sleep. Also, he had problems with constipation which we had to address with dietary changes. At the time, neither of these issues seemed particularly relevant.
From a developmental standpoint, he was progressing in a typical, age-appropriate manner. It wasn’t until Mark was 13 months old that we realized there may be a problem. It feels like it was yesterday, Mark was standing next to a drum that I banged…and didn’t flinch. I banged it again, no startle, no cry, no response at all. At the time I recalled being concerned he was hearing impaired, but after a formal hearing assessment, an ENT colleague cleared Mark of having hearing loss.
Over the next several months, Carissa and I realized something about Mark was different. His receptive and expressive language was delayed, he obsessed over computer and video games, and repeated phrases he heard on TV and the computer. The associates at my pediatric group who were his PCPs reassured me that he was fine, as did a special-ed teacher, but Carissa and I still had concerns. We had him evaluated by a Developmental Pediatrician and Early Intervention before his second birthday. He qualified for speech therapy, and his diagnosis from the Developmentalist was “speech and language delay”.
Over the next few years, Mark still showed obvious deficits in language, especially regarding pragmatic, or conversational language. By the time Mark was 6, after his 3rd evaluation by the developmental pediatrician, Mark was considered to be “just on the autistic spectrum”. I was always curious as to how you could tell if someone was “just on” a spectrum disorder. That is, who is to say where a spectrum begins?
Mark is now 12 years old and we moved from Long Island to the suburbs of Richmond, VIrginia 6 years ago. He is mainstreamed in middle-school but still needs an aide on a daily basis. Carissa and I have struggled for years trying to decide what educational system would benefit him the most. He currently receives a combination of both special-ed as well as a typical middle-school education. To this day, we are still not sure if this is the right formula for him.
Having a son with autism has taught me many things as a parent. We love our son unconditionally and have accepted that he will ALWAYS be different; however, I would be disingenuous if I said I would not change a thing about him. There is a barrier surrounding my son that can never be fully breached. Try as I may to hug and kiss him into “normalcy”, he is at best tolerant of my love.
Having a son with autism has also taught me many things about being a pediatrician. First, ALWAYS consider the instincts or intuition a parent has regarding their child; most of the time there is cause for their concern. Also, having a son and treating many patients with autism has made me a much more patient, tolerant person. I still have room to grow in this regard, a “work in progress”, but I’m getting better, thanks to my son.
Carissa and I have learned to accept who Mark is and what he CAN do rather than focus on his deficiencies. Though his conversational language and ability to socially engage are still sub-optimal, he is a pure, beautiful, gentle child who is incapable of some of man’s most horrible traits such as hate, jealousy, hostility, pettiness, malice, and meanness. Interestingly, though he is lacking in communication skills, he is incredibly charming and popular, even quite funny, in an almost accidental way. He is also much more aware than we even realize. Often times Mark will police my language from the next room, reminding me something I said, “is not a nice word”.
I love my son with all my heart, and a day doesn’t go by when he doesn’t teach me something, remind me of perspective, or just make me smile. I know he has made me a better pediatrician and father, but selfishly I hold onto hope that one day one of my hugs will unlock him and let out his inner beauty for all to appreciate.
Love you buddy!
Mark C. Garabedian, MD, FAAP