April is National Autism Awareness Month

Autism is National Autism Awareness Month and so in honor of my son I’m reprinting my article from Apex Book Company’s blog from last April. Typically this is where one offers up an awareness charity you can donate too. Mine is Comedy Central’s Night of Too Many Stars which focuses entirely on funding autism-related education programs which in my experience is by far the most useful way to throw money at the cause. It has the most impact on the parents, teachers and children currently living with autism. Research is noble. But this changes things for people like my family and I today.

How Autism Has Changed My Writing

by Michele Lee

I remember thinking, many times in my trials of pregnancy and early child rearing, “Wow, this is hard, but at least something isn’t really wrong. At least my child is normal.” Except he wasn’t, and at almost six my son was diagnosed with Autism. April is Autism Awareness Month, so this month I’m going totally personal, and talking about how raising an autistic son has affected how I write.

All brains are not created equal.

Evidence suggests that autistic brains are actually larger, and more complex, but they connect to themselves differently than “normal” (from here on out we’ll call them neurotypical) brains. Other mental disorders, from depression to ADHD, are also believed to potentially come from chemical or physical differences in the brain. So when considering characters there’s a whole range of new concepts to play with that I simply didn’t consider before. Especially in science fiction.

Communicating with others is incredibly important.

Last year in an evaluation of my son’s communication skills it was estimated that he could use verbal communication skills with 86% of the proficiency as other kids his age and when spoken to he “received” the communication of others with 64% efficiency. The difference between communicating with my son and my daughter (who is neurotypical) is massive. This leads to lots of rephrasing of the same thing, lots of trying to define words and concepts and explain things, especially emotions that I never had to think about before. The effort to always make sure needs and tasks have been communicated effectively and explicitly means more time spent on talking, and if needed, absolutely restrain on my emotions and the utmost care in each word I use. “I’m mad” gets a completely different reaction than “I’m upset” to the point that there is extra caution in the words I use and the inflections in my voice.

So much complicates communication so easily, which is an endless source of conflict.

Communication isn’t all verbal either.

Another trademark of autism is a lack of understanding of non-verbal social cues. I never realized just how much communication goes on before we even make a sound. Signs of autism include repetitive behaviors, “flapping”, echolalia, and not meeting people’s eyes. Years ago people tried to condition autistic children to meet the eyes of people when interacting with them, and discovered that the children’s stress levels skyrocketed when they looked into other peoples’ faces. Such a little normal thing, but for some reason it is so unmanageable for the autistic child. In the end what’s the purpose in trying to force non-verbal communications of one child to match another’s? The lack of words is as important as the words themselves, and every nod of the head of a character and every glance away have meaning.

The world is a sensory place, fiction should be too.

Another common issue with autism spectrum disorders is sensory issues, which include oversensitivity and under sensitivity to external stimuli. As if the pressure of dealing with other people wasn’t enough, a trip to the grocery store for an autistic person can also mean hearing the constant buzzing of the lights, the chatters and screams of people around them, the acrid smell of cleaning chemicals or rotisserie chicken, the metallic stink of meat on the edge of going bad and the nauseating reek of the jar of pickles broken on the next aisle.

My son is over sensitive to sounds, but under sensitive to touch. The latter means he’s what’s known as a “crasher”, constantly seeking deep tissue stimulation through activities like jumping on the bed, needing hard hugs, even slamming into walls and “tripping” on purpose, not to mention rough play. This means how things smell, sound, taste and feel are just as important to where we go, what we do and how we prepare him as to how many people are there and how special needs-friendly the event is. It also means being aware of the texture of the world around me, and arranging it for the comfort of my son (or for the emotional effect it has on my characters).

There are always obstacles, and they are always unexpected. And surmountable.

Character, motivation and conflict make or break every story out there. What could be a disaster, or a lifetime entry into the soul crushing cycle of despair can also be an eye-opening lesson on the things that make stories great. An obstacle can be a challenge to be overcome or a reason to quit, much like the dreaded submission process and the hated rejections. There are plenty of reasons to quit writing, and very few reasons to continue. The progress is slow, daunting and often seems to be impossible, but the pay off is too great for me to give up. I get daily reminders of why I do this, and sometimes just the problems themselves are enough of a reminder that I just have to be more stubborn than the problem to get things done.

With diagnoses on the rise Autism Spectrum Disorders are everywhere, a constant reminder that we live life in a collection of grays, whether neurotypical or not, and that our fictional worlds should dance across spectrums as well.