After a decade of searching, asking, researching, insisting, pushing, and praying, the diagnosis brought a sure and heady sense of relief. Autistic spectrum disorder (ASD). So much seemed to fall into place, creating a new, more easily seen and understood picture.
It wasn’t just about a label that signaled understanding of this neurological developmental disorder; it was about the hope and anticipation that someone would know how best to address and support this; that there would be answers to the big question, “What now?”
My son, Corban, was 10 years old when diagnosed. If you asked me to describe him I’d share that he is inquisitive, curious, very bright, strong-willed, creative, funny, and commands a precocious vocabulary.
Although there have always been red flags and significant markers with regard to Corban’s development and growth, without a framework or structure it’s been difficult to determine what might be a symptom of autism and what was simply my son’s personality.
Looking back it seems so obvious, but we didn’t know then what symptoms would group together under ASD. Quite simply, we didn’t know what we were looking for. And we have so often felt out of our element… Why did our baby and then toddler not want to be held? Why did he scream as a baby when strapped into his car seat? Why does he struggle when getting his hair cut? Why would he rather bite his nails than let me clip them? What’s the problem with tags in the necklines of his clothes, seams on the toes of his socks, and his aversion to wearing belts? Why would a happy ten-year-old boy suddenly refuse to have his photograph taken? Why can’t he tie his shoes yet? What about the long-term sleep issues Corban deals with? Was it Tourette’s? PANDA? Attention deficit disorder? Hyperactivity? Food allergy?
It’s only been in the last couple of years that other symptoms developed that seemed to point to something neurological. We saw a couple of tics begin and persist. He started walking and moving in circles. He would drift into trance-like states from which he couldn’t or wouldn’t respond to us. His strong emotional reactivity and resultant meltdowns began to complicate things for him at school. His focus and stubbornness became more pronounced.
Repeated visits to the pediatrician ultimately resulted in an EEG and a referral to the BRAINS Clinic in Grand Rapids, Michigan. With interviews, questionnaires, rating scales, and hours’ worth of testing Corban directly, we were informed our son has an autistic spectrum disorder (ASD), originally diagnosed as Asperger’s Syndrome.
My first response to the diagnosis was relief that we had a name and explanation for what was happening with Corban. I expected we would be given a recommended treatment plan and our marching orders for a routine of occupational therapy, group therapy, behavior-modification exercises, peer imaging, and social skills training. We would have a path set with markers to measure progress.
Oh, how very little we knew when we received Corban’s diagnosis in December of 2011!
What we’ve learned since is that autism requires of us as parents to become life coaches to our child from a place of respect. We’ve learned there is no one-size-fits-all treatment plan. There is no fixing what’s wrong. There is a spectrum of possibilities out there to explore. There is a journey we must make with our child beginning where he is and moving at his pace. It’s a marathon, not a sprint. We need to be his fierce and tireless advocates, to fight for his rights and dreams, and to love and accept him unconditionally.
We’ve learned that autism does not define our son or predetermine his life. And we’ve learned never to give autism the power to limit him.
The most profound changes happened not to Corban, but to me on that day in December of 2011. I wasn’t handed a diagnosis; I was handed a key. A key to a toolbox containing the tools I need to help my child: understanding, patience, compassion, endurance, resiliency, hope, courage, strength, sacrifice, and faith… the same tools that have made me a better parent and a better person.
This blog chronicles, for my son and myself, my journey as his fierce-mom advocate and all he continues to teach me along the way.