Is it even a spectrum at all?

 Is it even a spectrum at all?

 

Sally is a unique girl. Ever since she was little, rocks were on her mind; from picking up pebbles on her family's daily walks to owning countless guides on various minerals and gemstones, she was never far from what she loved more than anything else. Though her parents were bewildered by her ability to talk about nothing but rocks for hours at a time, they happily listened to whatever new gemstone she had discovered that day. When Sally goes rock hunting, it's always smart for a parent to accompany her, as her gait is clumsy, leaving her likely to trip over her own feet and injure herself on the stone she so loved exploring. When Sally's mother sends her off to school each morning, complete with the same packed lunch she requests every day, she worries about what state Sally will arrive home in. She isn't popular at her school, and her classmates' relentless teasing is often enough to bring Sally home in tears, hyperventilating or, at her worst, unable to utter a word for the rest of the day.

 

Bryan, who lives across the street from Sally, is too old to make a reliable friend to Sally, so he has no idea just how much they have in common. Bryan recalls his life as a series of obsessions, rather than dividing it by developmental milestones; all throughout grade school he knew everything there was to know about astronomy, before making a sharp turn and collecting various minerals with a fervor he thought was unique to him. Then came high school, when his shelf was progressively filling with books from one horror author, organized by the year of publishing rather than in alphabetical order. Bryan's in medical school right now, and the summer before he began his first year was vibrantly colored with one specific animated TV series he watched nonstop, in multiple languages, consuming every piece of media even remotely related to it; he felt like a kid again. He's never had many friends, save a select few with whom he's shared every gnawing secret, and his day-to-day life would creep out any potential new buddies. He wakes up at the same exact time, eats the same exact breakfast, and concludes his day with the same exact dinner and the same exact bedtime. 

 

Neither of these people exist in real life, though one of the two is a direct insert of my own quirks. Both of these people are what people describe as “on the spectrum“. That means they've been evaluated by a specialist and confirmed to exhibit enough of the de facto “autistic traits“ to qualify for a diagnosis. Though they share common traits – obsessive interests and difficulties with conventional socializing – is it really fair to say these two are of the same neurotype, despite receiving the same diagnosis? 

 

When most hear the phrase “the autism spectrum“, they think of a single horizontal line that moves from the left side, low-functioning, to the right, high-functioning. The ones on the left are considered to be “more autistic“, imagined as helpless, usually completely non-verbal, and heavily intellectually impaired. The right side, however, is seen to be the domain of the natural-born geniuses, the prodigies, the ones whose autism represents not a disability but almost a blessing, gaining almost savant-like status through their uncanny intelligence, pattern-seeking behavior, and photographic memories. Viewing autism as a single, homogenous trait therefore creates a contradiction; a “more autistic“ person is disabled, while a “less autistic“ person is more mentally developed than the average person, i.e. someone without autism at all. How could this be possible?

 

It goes without saying that this view of the human mind is incredibly simplistic and reductive. Even trying to place Sally and Bryan on such a spectrum leaves on puzzled; sure, their social lives are impaired, with Sally even exhibiting nonverbal traits, but what about their fixations on their interests? Is that a perk or a flaw? A spectrum of this form leaves much to be desired. As an autistic person myself, I could never find a comfortable spot to situate myself in, much like sitting in an airline seat that's far too small. 

 

If someone asked me where I'd put myself on that spectrum, I'd have no idea what to tell them. Sure, I could be considered high-functioning, as my speech and cognition reached the desired stages of development and I'm capable of living independently, but that's only one part of the story. My obsessive routines that feel like chains around my wrists, my anxiety telling me no one will ever love me, and my panic attacks beg to differ; on my bad days, I'm reduced to a helpless child. Anxiety clogs my throat so I can't speak, my mind is in a haze so I can't think, and my only solace is the same repetitive movements, the same hands scratching my skin raw, that have been with me ever since I was a little girl. On my worst days, “high-functioning“ is a slap in the face. 

 

But if these terms aren't the catch-all they seem to be, what's next for a doctor trying to describe their patients' physical and mental state? 

 

As I've illustrated before, autism encompasses a wide variety of cognitive, emotional and physical characteristics, each varying in intensity and significance for each individual autistic person. Rather than a spectrum, each patient is a mosaic, a wide palette of perceiving and interacting with the world. 

 

A certain online test I stumbled upon out of boredom highlighted just that. The autism spectrum test by IDR Labs takes ten different characteristics of autism spectrum disorder and assigns them in varying intensities based on how your answer their questionnaire. The questionnaire consists of 50 statements, each with a scale from “strongly disagree“ to “strongly agree“, so anyone taking the test can account for the various nuances in their characteristics and behaviors. I won't claim it's flawless, nor a diagnostic tool, but it can certainly help put the heterogeneity of the autistic experience into perspective. 

 

Once I took the test myself, I was presented with a vibrant color wheel of my various eccentricities: 

 

I will reiterate: this friendly little circle is not perfect by any means, but it does its job well. I can present myself with far superior accuracy to simply placing myself on a spectrum from left to right, and anyone wanting to know more about me gets a handy little graphic representation of what bothers me the most. 

I sincerely wish for the heterogeneity of the autism experience to become a standard talking point not only from the mouths of specialists, but also from parents who naturally want to understand their autistic child's needs as intimately as possible. In the end, who doesn't love a nice rainbow graph?