Happy Anniversary?

Today is my three-year anniversary. It was three years ago today someone first said the word “autism” to me when discussing Ryan. I had become concerned about his loss of speech, he had stopped responding to his name and instead of playing with a family member or another child preferred instead to stare out the window for long periods. Trains had become his lone toy of choice. He had been a happy babbling baby and was now very quiet. I wanted to have him evaluated, and admittedly autism was in the back of my mind. My pediatrician referred me to a Speech Language Pathologist (SLP) rather than to a Developmental Pediatrician for some reason. 

Before seeing the SLP, she required a hearing test be done, which came out completely normal. In hindsight, being hard of hearing might have been a far easier challenge to deal with, but at the time I was relieved he was not hearing impaired. 

Then came his Speech appointment. Ryan wandered around the room, barely stopping to play with any toys, did not respond to his name, and would not engage in play with the SLP. She said she really hated to be the one to tell me, but Ryan was most certainly autistic. 

Confirming something I already suspected was surprisingly stunning. I wanted to cry, but couldn’t. I was a bit in shock and really didn’t know how to react, or what my husband’s response would be. I had to take Ryan home and now I was looking at him differently, with a deep sense of loss. I wondered if he knew how much I loved him, if he would be capable of truly loving me…but most importantly, what would he grow up to become.

I was not an autism novice. Ryan’s older brother has Asperger’s, but he was always capable of holding very sophisticated conversations, so somehow even with all the quirks, the nuclear meltdowns and the inability to transition to new activities, it didn’t seem so bad. Ryan’s autism was a catastrophe. 

I was not looking forward to breaking the news to my husband, but there was no getting around it. He was only slightly in denial, thinking we needed someone perhaps more qualified than an SLP to give us a diagnosis. I suppose he didn’t really want to believe it any more than I did, but he’s been a steady partner ever since in this autism journey. 

I have been fortunate to work with a number of compassionate and knowledgeable professionals who are helping us care for Ryan, but I can’t help but be angry at the lackadaisical response by our government to the growing autism crisis. We don’t even have an accurate count of the numbers of children with autism in the U.S. today—the 1 in 88 number the Centers for Disease Control has published are based on a 2008 snapshot of 14 monitoring sites of children born in 2000. By definition, autism begins by age 3; my son is not counted in these numbers.

Even so, 1 in 88 represents a 78% increase in autism over the previous five years, and a ten-fold (or 1000%) increase in reported prevalence over the past four decades. I frequently hear the dramatic increase is due to better diagnosis, but consider the work of Dr. Peter Bearman, professor of Sociology at Columbia University. He studied how changes in the diagnostic criteria for autism had affected prevalence rates. His work, entitled “Diagnostic change and the increased prevalence of autism” was published in 2009 in the International Journal of Epidemiology, and found changes in diagnostic criteria for autism accounted for only a quarter of the increase prevalence between the years 1992 to 2005. 

As bad as 1 in 88 is, consider the autism prevalence in South Korea published last year. This was the first comprehensive study of autism incidence rates using a total population sample. An international team composed of clinicians from the U.S., Canada and South Korea estimated the prevalence to be 1 in 38 children, and concluded worldwide estimates would likely increase using this approach to identifying children with autism. 

And although autism affects more children than cancer, AIDS, muscular dystrophy and diabetes combined and incidence rates are still climbing, autism receives less than 5% of the research funding of many less prevalent childhood diseases. On top of that, doctors who truly understand autism are few and far between. My child’s pediatrician is no doubt a smart woman, having graduated from Cornell and having done her medical training at Johns Hopkins, but talking to her about autism is not much different than talking to a random person on the street. Our medical schools simply don’t teach much about autism, despite the staggering number of new cases each year. 

So today as I contemplate how far we’ve come since Ryan’s diagnosis, I can’t help but think about all the children who will be diagnosed on this day, tomorrow and the day after. Autism is a national health emergency and we need more first responders—earlier and better diagnosis, a health care system that understands the condition and how to treat it, recognition that it is a medical condition that cannot be specifically excluded from health insurance coverage, and a holistic approach to finding out the causes—this must include the first comprehensive study of autism rates in vaccinated versus unvaccinated children.

Three years later, I know Ryan understands I love and adore him, and his impromptu hugs and kisses assure me he loves me, too. What he will grow up to become is much less certain. Pondering this unsolicited anniversary reminds me how much his future depends on the care he receives today—a fact that sometimes leaves me feeling hopeful, and at other times desperate, but nevertheless grateful for the gift that is Ryan. Happy anniversary to me and all of us who love Ryan unconditionally.