Life as a developer on the spectrum 1/4

Former chef and soldier, then turned developer. I love outdoorsmanship, and all things technology.

Chapter one

Intro

As I am starting this post, my anxiety skyrockets. But it is something I need to do. I will be exploring my experiences as a developer on the spectrum – the beginning, the journey, and now working as a staff engineer at Mews. What I am trying to deliver is a story of how I became aware of being autistic, what I am doing, and the struggles in work-life balance I have been experiencing. The post is divided into 4 chapters and it is published to honor the autism awareness and acceptance month of April this year. You can read more about that here: https://iacc.hhs.gov/meetings/autism-awareness-month/2024/

What is the “spectrum”?

Let’s start by defining some terms and definitions. In the context of neurodiversity, the ‘spectrum’ refers to the wide range of differences in individual brain function and behavioral traits. It includes conditions like Asperger Syndrome, part of the autism spectrum.

Asperger’s: This is marked by high intelligence, difficulties in social interactions, and nonverbal communication.

Classic Autism: Often characterized by significant language delays, social and communication challenges, and unusual behaviors and interests.

Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS): Individuals who do not fully meet the criteria for Autism or Asperger Syndrome.

Rett Syndrome: A rare genetic disorder that affects brain development, leading to severe cognitive and physical disability, mainly in women.

Childhood Disintegrative Disorder (CDD): A condition where children develop typically for several years and then rapidly lose multiple areas of functioning.

Nonverbal Learning Disability: This is not formally recognized as part of the autism spectrum but shares several characteristics, including difficulty with nonverbal cues and motor coordination.

Autism spectrum disorders (ASD): This manifests uniquely in each person, making it a deeply personal and varied experience.

The terms “ASD” and “spectrum” are used and/or misused for all Autism related diagnoses. It is a bit easier to refer to it as “I have ASD” or “I am on the spectrum” rather than specify the actual diagnosis you have. When referring to such diagnoses, ASD and the spectrum are used, as umbrella terms, then you are labeling a person generally vs specifically.

What does Autism mean for people?

If you are familiar with the Netflix shows “Atypical” or “Love on the Spectrum” and the classic movie “Rainman,” they all show us the stereotypical Autism set-up with people who have Classic Autism, where the emphasis is typical language delays and communication challenges. They also touch on the brilliance that can be part of the spectrum. However, I do not see any diversity in public opinion. Most people consider Autism a diagnosis for non-functional patients, especially children with Autism. On the other hand, the show “House MD” have a slightly different take and there are a few episodes that touch on classic autism and the series in general depict House as having a possible Aspberger Syndrome. Ironically in the show another doctor looks at House to see if he is autistic but find him just being a jerk. Which is one of the perceptions of a person with Asperger’s.

Exploring the general public’s minds would be interesting, but I will leave that to you. Though most people will stigmatize a person for being on the spectrum, and most of the time, it will be a wrong assumption.

Adolescent boy playing with Lego
Photo:Nathan Dumlao via unsplash.com

What does Autism mean for me?

Until a couple of years ago, I aligned with the common perception. Autism means non-functional people with poor verbal communication and highly noticeable compulsive movements, tics, noises, etc.

Twelve years ago, my girlfriend and I hosted a dinner for a mutual friend who had a 10-year-old son with Autism. He was well-functioning but with some communication difficulties. He lacked social behavior norms and was direct without knowing how he was expected to behave. But one thing that fascinated me was the topics he was considering, like how clouds work and why the sun is an effective treatment for psoriasis that he and his mom suffered from. I spent the whole afternoon and evening with him, discussing fascinating things we thought and wondered about. Remember, he was just ten year old.

At the end of the evening, my girlfriend said, “Wow, he is completely like you!”. I was furious as I did not want to be compared to a ten-year-old boy who was diagnosed with ASD. I was ignorant and stupid.

But then something started changing. One of my best friend’s daughters was diagnosed with Autism. But, in my mind, she was not a typical example of someone with Autism. So I started to wonder about the diagnosis as, in my opinion, she was a high-functioning individual at the age of fifteen.

At the same time, one of my daughters started on her road to becoming a psychologist. She is now working on her Ph.D. She started talking about Autism and what it meant to her.

In a series of events over the next five years, I realized that my youngest daughter was experiencing many of the same issues that my friend’s daughter was struggling with. Then, my granddaughter was diagnosed with ADHD and Autism.

Also my oldest daughter and the mother of my two granddaughters is struggling with some of the same issues as my granddaughter in regards to ADHD. Back in the early nineties most girls with ADHD and or autism was not diagnosed as they mostly don’t have the same visible symptoms as boys have.
Eventually, I had to accept that Autism does not mean what I thought it did. The spectrum is called a spectrum for a reason. It is a range or continuum that includes a wide variety of different but related elements or conditions, meaning that it acknowledges the diversity and variability of the disorder.

Adult John snowshoe walking in sunny winter wonderland
Photo: John H. Oien

How does this apply to me? Self-realization.

So, when my oldest daughter started to ask and or state that “Dad, when you now see the diagnoses that your children/grandchildren have, how do you reflect on it?”
I slowly realized that all the things my children were referring to actually applied to me. Let me tell you, I went into complete denial, then disbelief, anger, and finally acceptance and realization.

It was painful discovering that my soon-to-be-doctor daughter was clear in her opinion about me being on the spectrum as well. It wasn’t just some of my children or grandchildren but also myself.

So, I had to take a deep and closer look at myself. It can be hard to look at yourself and be completely honest sometimes, and I had to examine 48 years of development.

I discovered the signs had been there all my life. I did not realize then that I was not stereotypical or “normal,” if you will. Things that were super hard for others were a breeze for me, but things that were super easy for others felt like climbing Mount Everest. Looking through my life, I have all these flashbacks that now make so much more sense than before. And I realize that life on the spectrum can be a highly functional one but also a huge struggle.

Looking back on my encounter with the ten-year-old boy, where I had a super interesting conversation about weather systems or the universe’s building blocks, I realized I did not have to fake my identity and social appearance in that conversation. I was being my unfiltered self!

Continue reading, the next chapter you can find it here: Life as a developer on the spectrum – Chapter 2 (mews.com)

Former chef and soldier, then turned developer. I love outdoorsmanship, and all things technology.
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