I don’t believe autism is a gift or a curse. It just… is what it is.
I believe it’s genetic and not as random as some might suppose. But I also believe that despite that, it’s still a roll of the dice at the time of conception. Many families are made up of both neurotypical and neurodivergent children. Some have two or more children on the spectrum. Furthermore, each neurodivergent child is completely unique and so are their particular challenges. Two kids on the spectrum from the same family can easily have completely different sensory sensitivities and behavioural issues. The truth is, we still can’t accurately predict how each of our kiddos will be neurologically wired. At best, we can statistically predict how likely they might be to have a condition or disorder when our genes combine. We understand so much more about genetics now than we did when autism was first researched by Grunya Sukhareva in the 1920’s, and more still since 1943, when a man named Donald Triplett, referred to as “Case 1”, was the first person in the world to be diagnosed with autism. And yet, there’s still so much we have to discover!
Some people say that “special children are given to special people”. The message going hand in hand with one about God not giving you more than you can handle. But I think that’s a bunch of hooey. Because there ain’t nothing special about my husband and me! We are just… people. People with character defects, limitations, and a handful of unhealthy coping mechanisms. We’re average people who happen to have had a child with a developmental disability. It’s not fate, it just is.
When Aidan was first indicated for autism, and we began sharing some of our experiences with family and professionals, people told us we were special. And strong. And brave. And superheroes. And I suppose, in the beginning, I wanted to believe that. I needed to believe that I was somehow preordained to be up to the task of caring for my child with high needs. But as time has gone by, and smaller challenges have become bigger challenges or different challenges, I find that I’m reminded everyday that we are 100% learning on the job. We didn’t magically have all the tools we need from the get-go. We are adding to our toolbox tool by tool, one day at a time. We are leaning into becoming more adaptable by accepting that we cannot control everything. We are sitting with excruciating feelings of helplessness and still staying focused on the task at hand. We are learning to decipher our son’s needs based on his behaviour, and not on any verbal cues. We are strong, but that strength was forged in fire. Only time and hard lessons learned, are finely tuning our parental instincts. We are not special. We’re just an average Joe and ordinary Jane… with a ways to go and lot more to learn.
When well-meaning friends tell me that they “don’t know how we do it”, my answer is pretty simple: We rise to the challenge because we must, we don’t have any other choice. And if you were in our shoes, you would too. Autism parents become who they need to be in order to give their kiddos the best possible support. It doesn’t make us special. Any parent would.
