Last month, John Paul Scotto* wrote an article titled ‘I Tried to Forget My Whole Life. I’m Glad I Failed’ for Longreads, an online publication. Scotto, who lives in Virginia in the U.S. and teaches writing at a university, was diagnosed as autistic at the age of 35. His evocative piece struck such a strong chord that he’s been inundated with correspondences from fellow writers, the family members of neurodivergent people, literary publications, and others who were diagnosed late in life. “Some of my favourite correspondences have been with other people who received adulthood diagnoses,” he says over email to the Magazine. “Like me, they tended to be overachievers who tried to mask their neurodivergence by excelling at things. I’ve also appreciated talking to the parents of autistic kids. One mother told me that my writing gave her ‘insider access’ to her son’s mind.”
Interestingly, Scotto — who says he helps his wife “pamper” their backyard chickens and plays internet chess in his free time — decided to get a diagnosis thanks to a television show. “My wife initially suspected I might be on the spectrum because I had so much in common with an autistic teenage girl on the TV show Everything’sGonna Be Okay. We might not have even considered the possibility if we hadn’t witnessed this depiction of neurodivergence in popular culture.” Which goes to show how important representation is, as well as storytelling and conversations around neurodivergence.
Scotto has written roughly a dozen essays since his diagnosis, exploring different aspects of his neurodivergence. “These essays are part of a memoir I’m currently finishing about being neurodivergent and not knowing it,” he adds. Edited excerpts from an interview:
What made you write about your experience?
It’s been nine months since my diagnosis, and nearly two years since I first realised that I was likely autistic. A number of the experiences detailed in that [Longreads] essay — like lying compulsively to colleagues about my past experiences or writing a fan letter to Keira Knightley as a young adult — were so shameful to me that I expected I would take them to the grave. My diagnosis helped me see these embarrassing memories as manifestations of my neurodivergence, which made it easier for me to acknowledge them. Being different from other people has always been difficult and painful, and I believe that I became a writer so that I could articulate and thereby comprehend my pain. Post diagnosis, my writing explores all of the behaviours — even the embarrassing ones — that gave shape to my pain, and as a result, I’m not reducing myself in my writing. I’m delving into stories I might otherwise have avoided.
“After my wife noted that I had a lot in common with autistic people, I took every autism quiz on the internet, and I was a bit frightened when every quiz suggested that I was likely on the spectrum and should see a doctor. I didn’t initially like the idea of being on the spectrum because I always hoped that my anxiety and my social problems were fixable, but autism is a permanent condition.”
You wrote about the process of “forgiving yourself”, for the strangeness you’ve always wanted to erase?
This forgiveness is ongoing. I still have a tendency towards negative self-talk and low self-esteem. But as I continue to write about my shameful traits in connection to my autism, forgiveness comes easier because I grasp the roots of those traits. I think this might be true for many behaviours that people conceal or are ashamed of. It’s worth remembering that a brain is just physical material. And our traits and behaviours are just the results of complex chemical reactions within that physical material. We therefore should be kind to ourselves because we have zero control over what kind of physical material exists inside our skulls. We simply have to learn to manage our brains as they are.
I’ve come across Reddit threads and videos by people who’ve regretted getting a diagnosis because they weren’t cognizant of potential costs: difficulties/prejudice at work, being found legally incompetent, etc.
I don’t talk to many people about my diagnosis because I’m afraid of how it will change the way they view me. I need my job badly, as I’m in a massive amount of student debt that my parents cosigned on, and I don’t want my neurodivergence to impact my ability to make a living. A few trusted colleagues know of my condition, but that’s it. My hope is that, through my writing, I can eventually make a living in a way that completely embraces my neurodivergence. But I’m not there yet.
“A diagnosis can be helpful especially if that difference is harming you or those who care about you. It can help you learn to cope with issues you’ve tried to conceal or eradicate for your entire life. And you can also learn to embrace what cannot be changed about you. It’s better to embrace those things than to resist them, since resisting them would be to resist who you are, and that can only lead to suffering.”
In the age of social media influencers, flattening of labels — disorganisation as ADHD or social ineptitude as autism — is a worry. It could lead to our culture taking these conditions less seriously. What are your thoughts on this?
I have an addictive personality, and I learned, years ago, that social media is too addictive for me. For that reason, I don’t have any social media accounts, and I know very little about influencers and trends. I am, however, from a culture — lower-middle class, conservative America — that didn’t take mental health seriously. So if social media is causing people to take neurodivergence less seriously, that feels like a new manifestation of something that has always existed in other forms.
I do find the flattening of labels worrying. It can reduce a person’s developmental condition to a series of atypical character traits and nothing more, when in reality atypical character traits emerge from perceptive differences within an autistic person’s mind. For example, social ineptitude is not merely a character trait for some people on the spectrum. It’s the result of overstimulation, being unable to read other people’s expressions, and confusion about when to talk. If the label ‘autism’ is flattened and conflated with ‘social ineptitude,’ the overwhelming experience of being social while on the spectrum is mostly ignored, since people are then focusing on the external results — like awkward behaviours — and disregarding the complex underlying causes of those behaviours, and/or the skills people learn to mask or manage their social difficulties.
While some people with autism do experience mental health problems, autism isn’t a mental disorder. Do you find that this distinction is often blurred in society?
Before I knew I was on the spectrum, I thought autism was a mental disorder, which strikes me as glaring evidence that society’s view of autism is blurred. My view was distorted because of the way it was presented to me in society. Years before my diagnosis, whenever I sought help for symptoms of masking my autism [anxiety, depression, suicidality], doctors were more interested in giving me medications than they were in helping me discover what was causing my anxiety and depression. So the medical system sort of encouraged me to think of myself as a person with mental health problems that needed curing, rather than a person who perceived reality in an atypical way.
*Scotto writes under a pseudonym
