by Amy Wigger
Your son is autistic. I let out a sigh of relief, at the same time feeling like someone had knocked the wind out of me with so few words again.
Three years before, almost to the day, another medical professional looked me in the eye and said five words, your son has Down syndrome. I was prepared for that diagnosis, even without a prenatal diagnosis. I had literal dreams about our third born child having Down syndrome, had mother’s intuition, and I believe a divine message somehow letting me know that Owen would be born with Down syndrome. So while the rest of our family and friends felt the world shift completely from under their feet, I was standing tall and strong. I prided myself on the way I gracefully handled this diagnosis that no one else expected and Owen soon began to thrive.
Owen began to say words around age 2. Simple words like mom and dad or cookie rolled off his tongue. Again, we were so impressed and excited. Life marched on.
Around age 2 and a half, we noticed Owen was getting lost in his own world more times than not. He was attracted to lights and anything he could hold in his hands and shake simultaneously. I would later be informed at his autism testing that this was in fact him flapping, a characteristic of autism. He was becoming more and more angry and his words had all disappeared, really before I noticed, they were gone. He didn’t try to sing along with songs anymore and the light we used to see in his eyes was almost gone.
As parents we began to wonder what we were doing wrong. We hadn’t changed any routines or the way we interacted with Owen. His environment was consistent, and we kept basically the same daily schedule. We were at a loss. We were frustrated and sad, mostly because we wanted to help Owen, but we had no idea how. I was watching other kids with Down syndrome surpass Owen’s developmental milestones. Their temperament was drastically different than Owen’s. I quit going to playdates, not just with typical kids, but with families who had kids with Down syndrome. We had to be failing him somewhere. Why was our child the only one not moving forward?
Owen’s teaching team were the ones who told us that they thought it would be beneficial for Owen to be screened for autism. I was confused and sad, but all of a sudden a bit hopeful as well. Maybe we weren’t terrible parents, maybe there was more going on.
His screening took place at our local Children’s hospital. It took about 4 hours and part of us wondered if we would go and they would dismiss his behavior as “low functioning” Down syndrome. We had heard from other families who had gone through testing 5-10 years before that it wasn’t an uncommon phrase when they inquired about a dual diagnosis. At the end of the appointment, we heard the words, he has autism. They would of course have to write up the report and file all the paperwork, but we had our disability punch card punched again.
It took me longer to accept this diagnosis. It didn’t feel fair that Owen would get another diagnosis. One that would complicate his life further. One that may limit him further. I allowed myself to stay in that place. I still allow myself to feel those feelings, to mourn that our son no longer “just” has Down syndrome. These days we see autism characteristics come through into our daily lives more dominantly than Owen’s Down syndrome characteristics.
As a parent I still feel like I don’t quite fit at either party. I don’t totally fit in with the Down syndrome crowd and the same goes for the autism community. Owen doesn’t fit in either box either. I’ve decided that I may not be the only parent feeling this way. My goal is to be as transparent about our dual diagnosis life as possible, while still respecting our son’s autonomy. I also want to share our story to encourage any parent who is feeling what we were feeling that you are not alone. That statistics are showing that more and more people with Down syndrome also have autism. And if you suspect your loved one does, it’s always worth looking into.
We also see light again. Owen began ABA therapy and has been attending what may be an actual utopia of therapy centers for 5 years. He is fully included in a general education setting where his school welcomes his behavior techs with open arms. The team he has works together to make sure everyone is on the same page, and we are all working together to meet Owen’s needs so he can thrive. He also is gaining some verbal language back and successfully uses a device to communicate with those around him.
We still have difficult days, sometimes difficult seasons. We are all learning and growing and figuring out how to support Owen and one another as we move down this road. But we have hope again. The light is back in Owen’s eyes. He is a wonderful son, brother, and friend. He makes us laugh every day. He is blazing his own path and we could not be more proud of him.
For more information about DS-ASD dual diagnosis, visit dsawm.org/resources/dual-diagnosis.