The Detour
Autism is defined as a developmental disorder of variable severity that is characterized by difficulty in social interactions and communication and by restricted or repetitive patterns of thoughts and behaviors.
This is a great way to begin to understand autism, however, it is far more complex than that.
No matter how prepared you are for children, the thing that most parents aren’t prepared for is a child with a disability. Some parents find out while their child is in utero, others not until months or years later. Either scenario presents many challenges and heartbreaks. If you find out before your baby arrives, you may find yourself mourning the future of your child before you have held them for the first time. Furthermore, in more complicated situations, you may be faced with the impossible decision of terminating the pregnancy or not; leaving an even deeper wound in your heart. Others are born typical and sustain an injury that renders them disabled leaving families to learn to cope with the complexity of their new normal.
Then there are families like mine, who are blissfully unaware of what is sometimes called an invisible disability. Until one day, you start to notice that there are some unusual behaviors being exhibited and many missed milestones. I have heard stories of families who have autistic children that hit every milestone on time, sometimes even early for their developmental age, only to lose every skill that was previously gained. You see, regression is a typical trait of autism. In my opinion, it’s by far the hardest of all. The immense amount of work you and they have put in starts to pay off, only to have the neurodivergent brain erase the progress that was made just to begin all over again.
Wyatt and Everett's first birthday came and went. Around 15 months old, neither boy was walking or talking yet. In fact, they were barely pulling themselves up onto anything. Even their version of crawling, which was more like an army crawl, mostly dragging their bodies, pulling themselves by their arms, was starting to worry me. But, because they were twins, and seemed to be ready to do things both together, and in their own time, I tried to remain patient. I expressed whispers of concern to family members and friends. I was guilty as hell of comparing my children to my friend’s children of similar ages. Most of my fears were waved off as “boys are lazy, they do things later than girls'". Or “don’t compare your children, they all develop differently” which is true. However, there was a nagging little voice inside of me that was telling me there could be something more serious going on.
Around the time of their 18-month check up at the pediatricians office, prior to the appointment, I was given a packet of paper to complete. I sat down the evening before to do just that. If you aren’t familiar, there is an Ages and Stages questionnaire designed to track development in children that is completed before every appointment. As I was working my way through the packet, I was starting to think the voice in my head might be right. My boys were hardly babbling, and they had only started to walk about a month beforehand. When they did, I breathed a sigh of relief; only to become anxious yet again. I quickly realized that walking and talking weren’t the only obvious delays. The second part of the paperwork was the M-CHAT-R, a checklist used between 18-24 months to rule out any concerns of autism. The questions are mostly directed towards specific developmental milestones. Questions like “Does your child get upset at everyday noises?” YES. “Does your child point with one finger to show you something interesting?” NO. “Is your child interested in other children?” NO. In fact, at the time, Wyatt was not the slightest bit interested in his own twin brother. Friends and strangers alike asked me when they found out I had twins, if they shared an unspoken bond. Unfortunately, I often found myself lying, perhaps out of some sort of shame and embarrassment as if in some way I should feel bad telling strangers the truth. But I was drowning in twin toddlers and was hardly sleeping myself. The lie was easier than admitting to myself or to others that there was even more to worry about than meets the eye. As I started to see a pattern in the questions, a feeling of dread came over me. I already had an idea of the direction this was heading.
I ignorantly opened my computer to a new Google tab and typed in the word autism. The search pulled up website after website of the best therapies, foundations dedicated to the cause and of course, the traits or markers of autism in children. Because I am apparently a masochist, I opened a more comprehensive autism-screening tool. Wyatt was checking off every. Single. Thing. Suddenly I could see a distinct difference in Wyatt and Everett. Everett was most certainly delayed, of that there was no question. However, I could not check all the boxes as yes for him the way that I could with Wyatt. I became very upset, heartbroken, in fact. I think for the first time in my life, it was the feeling of true heartbreak, soul-crushing heartbreak. I will never forget that moment; I can still feel the pain of that evening looking back at it today. I dove far too deep into Google for information. After some time reading, I was an ugly-crying, snotty, puffy eyed mess. Scott had gone to bed long before me, he slept peacefully, blissfully unaware of what I had possibly discovered about our Blue April Boy; and our lives wouldn’t be the same when he woke. That night I slept on the couch (and I use the word “slept” very loosely). The hours ticked by, and I couldn’t stop myself from spiraling further. I Googled everything, and I mean everything; life expectancy, quality of life, severity, I even Googled “what happens to special needs kids when their parents die?” The answers to all the questions made me equally nauseated. I cried until the sun came up, and that isn’t an exaggeration. In a couple of hours, we would head to the appointment. I was worried, scared, and anxious.
As expected, our wonderful pediatrician shared some slight concern over our answers to the questionnaire. He wanted more details, and asked many, many follow up questions. With all the information he gathered, he said the words I feared the most. “I think it's time to see a developmental pediatrician and to get in touch with Early Intervention”. It took all I had not to sob right then, in that moment.
Today, looking back, I am so grateful that our pediatrician was able to recognize our concerns and take them seriously. I have heard multiple stories from others, that oftentimes doctors decide that it’s best to take the ‘wait to see’ approach. I knew from my binge the night before that early help was the best shot we had at getting Wyatt what he needed. We left feeling scared, concerned, worried and slightly in shock. On the car ride home, Scott said something that I will never forget. He said “but he can grow out of it, right? I have never seen adults who are like this.” Because he hadn’t been a part of all my previous research, he didn’t learn the reality we were facing; Wyatt will always be autistic. Until recent years, autism wasn’t understood, autistic people and others with disabilities were often housed in group homes or in state-run facilities, hidden away from the world, drugged and forgotten. Thankfully, this is not the case today. Awareness is spreading.
Autism can be ugly and difficult, unfortunately it isn't understood by many. It can also be beautiful. With all the available resources and programs to offer support, we dove into our new normal, headfirst. I will tell you that it does get better. Sink or swim, we chose to dive in headfirst, not wasting any time and were providing Wyatt the tools he needed to succeed. Over time, I have begun to realize that it is a marathon and not a sprint by any means. Although Wyatt does encompass parts of the autism definition, it's only the end of the story if you choose to let it be. It's more like a detour in our story.
