Friday, April 2 is World Autism Awareness Day. Recently local author Dana Mills joined writer and autism advocate Jake Lewis for a virtual discussion about representation and writing bravely in the face of personal struggle.
Dana Mills: How do you identify as a writer, Jake? Would you call yourself an “autistic writer”?
Jake Lewis: To me, I’m just a guy who just so happens to have autism. It doesn’t really have much of an effect on who I am as a writer, I don’t think.
DM: I admire your honesty in your piece, My Take on Mental Health for Autistic People, where you open up about personal struggles you have faced. Was there any relief in being so open? In what ways was it difficult?
JL: When I wrote my piece on mental health a year and a half or so ago, I knew and understood what I was getting myself into. To me, I was just merely retelling facts. I didn’t feel any relief. I felt no different, upon completing the piece, as when I had started it.
I had suffered something nobody should have to go through. I could see it in the people around me, saying they were fine when they very evidently weren’t, just like I had. People I cared about. I knew they didn’t say anything, and I knew that odds were they wouldn’t, due to the stigma of being seen as insane, or sick, when really they weren’t, they just needed a bit of help. Lo and behold, Autistics Aloud had announced the theme of their second edition: Health. That’s when the idea came to me. If nobody else was going to reach out to these people, and help break the stigma, I figured I would.
So, I wrote my past down, holding nothing back. Talking about the crushing loneliness, and the ever digging hooks of self doubt and rage, to my brushes with suicidal thoughts and urges. I had a point that I wanted to get across to anyone who would read that piece. That point being that it’s never too late to ask for help. My parents, my mother especially, were concerned. They were scared that people wouldn’t understand, and would say unpleasant things, so I had to convince them to let me send it in. Soon enough, they did, and it was published.
DM: Do you have any suggestions for people trying to write about something so personal to themselves?
JL: You have to ask, “Why am I doing this?” Once you figure it out, a path will open. Follow it. You may get some backlash, but what great mind was liked by everyone? You have to focus on the end goal. My goal was to break the stigma. I just have to hope that what I did helped someone. If my writing helped at least one person, then I have succeeded in what I set out to do.
DM: Does writing help with certain things in life? How is it difficult for you?
JL: I have a certain need to control things. With writing, I can have that. I can control the world, the characters, what colour the dragons are, and decide if this wizard throws a fireball at the encroaching army or does the smarter thing and runs off. I can make characters be who I could only dream of being, and do things I could only dream of doing. It is my break from reality, where everything is okay.
DM: Do you have any upcoming projects or publications you’re excited about?
JL: I am one of fifteen youths in the Atlantic provinces chosen to interview survivors of institutionalization. This work will be put into a textbook that will be used by high school teachers. I have also been classified as a youth participant in a heritage project by Inclusion NS.
DM: In your non-fiction pieces you express different facets of what it means to be autistic, but you write fiction as well; are any of your characters autistic or neurodiverse?
JL: I do have a couple more neurodiverse characters. The most notable one I’ve made is the character Auron The Red, an undead necromancer who runs a funeral home with his undead chinchilla, Maurice. I based him off numerous autistic characters I’d seen, such as the main protagonist in The Good Doctor.
I made him less robotic, like many people with autism are portrayed in the media, but more confused. He always felt one step behind, occasionally saying or doing something he arguably shouldn’t have done, and using words from two hundred years ago that no one uses anymore. He lives in a world he doesn’t fully understand, which on many occasions is how I’ve felt about the world I live in.
DM: Can you expand a little bit on your writing during this past year?
JL: I have been writing mostly fantasy-related stuff in this great big world that I’ve made, that I started creating at the prompting of my dad after he introduced me to Terry Pratchett’s Discworld. I’ve named this world Aetherion, where I hope to explore ideas such as magic polluting the environment; an undead wizard having to convince winter to bugger off; a robotic sorcerer, along with his over-talkative swordsman-friend, who has to save a kingdom of merfolk who live in water spheres above the ocean; a gargoyle detective investigating a fairy mob; and a warlock who’s trying to stop himself from destroying the world.
DM: It seems that autistic characters are still mostly misrepresented—at least ones written by non-autistic writers. How should autistic characters be portrayed?
JL: People with autism are just that, people. We have hopes, dreams, character flaws, relationship troubles. The only difference being we have more sensitivities and social awkwardness than a neurotypical person. The media makes us look like robots—cold, calculating machines that don’t feel emotion. This, as anyone who’s met an autistic person can tell you, just isn’t true. Just portray them the way you’d portray anyone neurotypical. Make them a person.
DM: As an autism advocate and educator, what are some of the things you’ve informed students or teachers on? Any examples or anecdotes you’d like to share?
JL: I remember The Autism Awareness Day of 2019. One of the highlights of my advocacy career thus far, to be honest. I was around that time I spoke the proclamation at the flag raising, and came into possession of an official document signed by the premier of Nova Scotia, which I promptly lost a few days later. I also made $185 for a school fundraiser that I led for Autism NS. I spoke at L.E. Shaw Elementary School, which I still consider to be one of the best audiences I’ve had to date.
DM: Is there anything about the language we use around autism that you think has to change?
JL: People, for as long as I have been alive, have used the words “retarded” or “autistic” as a means of saying that something or someone is stupid—essentially used as derogatory terms for someone with autism, or other mental disorders or disabilities. It makes people with those disorders or disabilities look lesser, and that in turn causes people to associate those people with these disorders as stupid and incapable. This isn’t true; autistic people have been able to exist and be independent and experience success, yet the general public still uses these words. It needs to stop.
DM: Does anything make you hopeful about the direction things are going in terms of the treatment of autistic individuals?
JL: Things are improving, though it is still difficult for people with autism to find jobs. But people are slowly becoming more considerate. They seem to be slowly understanding.
Photo courtesy of Jake Lewis.