Neurodiversity
It was apparent from a very young age that I was different than my peers. I had sensory issues that interrupted my daily life. I couldn’t stand the feel of tags or seams on my clothes. The feel of grass on my legs was so awful I refused to go on the lawn. Flavors and textures of food overwhelmed me, and my diet was so limited that between ages seven to nine the scale didn’t budge from 39 pounds. My sense of smell was so heightened at times it became debilitating, and certain sounds that seemed pleasant to other people were like nails on a chalkboard. I almost never slept and I didn’t need to; I had so much energy my parents compared me to the Energizer Bunny. I had strange obsessions that I’d fixate on for years at a time. Shiny rocks, pennies, and eventually words. But despite the fervor for learning new words and using them as often as possible, when my emotions overwhelmed me all ability to communicate was lost. I knew I was upset and I wanted desperately to explain it, but it was like my brain refused to convey to my mouth the words I needed to say.
The good news is that I was very intelligent. At the age of seven I was tested at school and the results showed I was academically equivalent to a college student. Life was not easy by any stretch of the imagination, but thankfully I was able to learn through extreme trial and error--which at times ended in heartbreaking results--how to fit in just enough to make it through the next few decades of my life. Then I had babies, I was head over heels in love, and for the first time in my life I felt a true sense of meaning and purpose.
When my oldest was a few months away from turning three I started noticing small occurrences that began to worry me. He lined up his toys every day, often making such long lines they went throughout the kitchen and living room. His stuffed animals in his bed had to be in a specific order every night before he could sleep. He didn’t like blankets, sheets, or any other items to touch him in bed. He was becoming an increasingly picky eater. Any unexpected changes in routine resulted in a meltdown. He would only use certain plates and cups. All of these are minor when considered on their own. But as the list started to grow longer I began to worry more. Then he suddenly became afraid of clouds. So afraid that he would no longer go outside unless the sky was clear blue. He even began to avoid going near windows when there were clouds in the sky.
At his well-check I brought the issue up to his doctor. She wanted to wait a little longer to see if he outgrew some of it but I wanted him to see a specialist as soon as possible. We were put on a waitlist and told it could be anywhere from 3 to 6 months. In that interim I did research, and lots of it. I knew what the diagnosis would be long before the appointment with his specialist. And five months later it was confirmed. My little boy was autistic.
Any parent with a child who is neurodivergent will tell you there are all sorts of emotions, all kinds of highs and lows, endless scenarios and what-ifs that play out in your mind. I could easily write a book about it. However, that’s not the point of this blog. So, for brevities sake I’ll leave that for another time.
Fast forward a year and my second born was already displaying some obvious characteristics that he too was on the spectrum. The road to his diagnosis took much longer, despite his pediatrician’s attempts to have him evaluated every few months. His characteristics were completely different than his big brothers. Instead of avoiding sensory input, he sought it out, often in risky and horrifying ways such as running full force into walls and jumping from high heights. At nine months old he climbed onto the kitchen table and was about to jump off when I caught him. He pushed his brother’s giant bin of hot wheels cars around the house as if it were full of feathers. He loved going to stores, seeing all the lights and hearing all the sounds, and he’d cry the whole ride home when we would leave.
Finally at the age of 5 he received a diagnosis. He too was on the spectrum, and he also had severe ADHD. (Side note here, ADHD is real. Many people seem to think it’s made up but let me tell you, if you have a child with ADHD you know beyond a shadow of a doubt, it is a very real and very serious disorder. Again, I could easily write a book about it and how hard it is for my little guy to function in the world, but that I will save for another time.)
The first few years after my boys were initially diagnosed the focus was completely on them and making sure they had the therapies they needed, which included physical, occupational, and feeding therapy. But as I began to adjust to our new normal and as my boys grew, I started to notice more and more similarities between them and myself as a child. Finally, working up the nerve, I mentioned to my husband that I thought I too might be on the spectrum. To my surprise, he agreed, almost a little to eagerly.
In my mid-thirties I was officially diagnosed. At first I wasn’t sure it would make a difference. But when I received the results of my evaluation I saw things in a whole new light. All the struggles I had fitting in, engaging in seemingly simple social interactions, and functioning with day-to-day life suddenly made sense. I wasn’t a failure. In fact, I was kind of a rock star. I had overcome so much adversity and trauma, which in itself was no small feat. But I had done it all with a brain that functioned vastly different than most of the rest of the people in the world.
Since my boys were diagnosed, I was a fierce advocate for them. Some people in our friend group made comments about not needing to label them. But I knew I wasn’t labelling them. Just like if a child was deaf or blind, you wouldn’t hide that from others because it is nothing to be ashamed of. Nor was it shameful to have ADHD or autism. I was equipping my children with the skills to speak up for their needs and be honest about who they were. Sure, some people might judge them for that and not want to be their friends. But those people weren’t deserving of their friendship anyway.
As my own diagnosis sunk in, for the first time in my life I began to feel comfortable with also advocating for myself and my own needs. Before, I had always apologized if I got overstimulated and had to leave early, or if I was too burned out to leave the house at all. Now that I finally understood what was going on I was better able to express that to others.
When I first started writing the middle grade series, A Home Called Haven, I knew one of the characters would have a stutter. After all, the idea to write the book had originally arisen so my youngest son would have a character in a book who struggled to speak, just like him. But as I began fleshing out the characters it became clear both children, Fox and Otter, were neurodivergent. Which made sense since I shaped their characters off both of my sons plus myself as a child. Fox has anxiety and is autistic. Otter has a stutter and ADHD and is dyslexic.
Neurodivergence is something I understand intimately. As a parent raising children who are ND. As the wife of a husband who is ND. And most importantly because I am ND myself. I don’t specifically mention each character’s specific differences in the stories, because there is so much more to the books than that. But I can’t stress enough the importance of having diverse characters in books, especially for children. I hope that children out there who are different from their peers in some way will take comfort in reading about characters who are also very different and unique.
I firmly believe in accurate representation. Too often I have read characters that are supposed to be neurodivergent who exhibit only the stereotypical traits. Recently I ran across a man on Linked-in who was pushing his book that contained a main character who was an “autistic psychopath.” His words, definitely not mine. I was appalled. I asked him if he was on the spectrum and why he chose to classify his psychopathic character as autistic. I have yet to get a response.
I am not saying people should only write characters who are similar to themselves. That would make for some very boring books. But if a writer is going to have a character in their book who is neurodivergent, or different in any way from the norm, that writer needs to do their research and write with sensitivity and accurate representation. Otherwise, they risk losing their credibility as a writer, and even worse, their own integrity.
In the future I will probably continue to write characters who are different from the norm. That’s what makes for an interesting story after all. But more importantly, it helps people who may feel awkward or weird to find someone they can relate to, someone who is like them. Books were my solace as a child, my best friend, my most reliable companion. So, I write books for that little girl who I used to be. For my own two beautiful boys. For all the children out there in the world that need a story to help them through hard times, take them on an adventure, and show them how amazing life, and the world, can really be.