Judge Autism By What We Have, Not What We Lack

I recently attended a conference talk about empathy. In it, the speaker made the claim that “everyone can empathize, except maybe people with autism or anti-social personality disorder.” I left the talk feeling extremely frustrated and upset. First of all, her statement was inaccurate. It represents an unsubstantiated definition by Simon Baron Cohen, who has done as much to hurt our understanding of autism as help it. Subsequent research has found that, if anything, autistic people empathize more intensely than neurotypical people, not less. Her statement was also non-inclusive and belittling, which was ironic given she spent a fair amount of time talking about diversity and inclusion. Finally, as I am on the autism spectrum myself, I couldn’t help taking her statement personally.

The world tends to view autistic people by what we lack, not what we have. We lack empathy, we lack social skills, we lack the ability to regulate our sleep. Nearly every piece of research I’ve seen focuses on identifying what’s missing (genes, hormones, etc.). I’ve yet to see a scientific study that tries to identify what autistic people can do that neurotypical people can’t. Very little discussion about autism focuses on our experience for its own sake, without judging it or using it to identify what is missing or lesser, or defective. One might ask whether the notion that autism lacks empathy in fact represents a lack of empathy on the part of neurotypical people.

The reality is that our very challenges make us more, not less. Imagine you had to bike into a headwind, or hike with 50 pounds on your back, to get to work every day. That’s what it’s like for many of us. I find simple, ordinary tasks challenging. Shaving, brushing my teeth, tucking my shirt in, making an appointment to have my car’s oil changed, navigating turnstiles to enter the building along with lots of other workers, all take a tremendous amount of energy and attention. I once took a job working for a company whose headquarters had a very confusing layout. It was easy to get turned around and end up at the entirely wrong end of the building. For the first two weeks, I was in a near-constant state of panic. I wanted to quit every single day.

I didn’t quit. I kept going through the panic until it eventually eased. For us, merely showing up is an act of bravery. We are not selfish, or uncaring, or disconnected. We work incredibly hard to accommodate ourselves to your world. We show up, day after day. We are courageous, resourceful, conscientious, honest, and ethical. Because daily life is hard for us, when we come to your parties or your meetings or your buildings, you should realize that someone incredibly strong has entered the room.

Even our apparent grumpiness, or obstinacy, or pickiness is valuable. I’ve heard numerous statements to the effect that “autistic people make good testers”. We do, but not because we like doing “rote tasks that no one else wants to do”. I’m the very last person in the world you’d want to give a task requiring attention to detail. Every school report card I ever got noted that I understood concepts quickly, but “made careless errors” and needed to “pay more attention to details”.

I’m a good tester because I’m incredibly good at seeing patterns, which means I’m incredibly good at seeing holes in patterns. Those holes bother me more than most people. A slight problem with letter spacing, or a minor continuity problem in a film, drives me crazy. I can’t overlook it. Quality needs people who can see holes in patterns, and who care about those holes.

The wonderful film “Autism in Love” tells the story of a couple struggling with their relationship. They feel like they’re not “in the same place”. They slowly work through things until they are in the same place, at which point he asks her to marry him, at which point she says yes. It’s a heartwarming moment. They were able to navigate their way to harmony because they were able to be honest with each other. They were able to cut through their own neurosis and fear and just talk. Everyone’s relationships could benefit from this ability.

We are able to do many wonderful and important things. The ability to empathize is one of them. I found the speaker’s statement that autistic people lack empathy ironic on a personal level. Her talk had a few very minor glitches: moments where she forgot what she wanted to say next, or stumbled over her words. It was completely normal, and not a big deal; it’s happened to me in almost every talk I’ve ever given. For me those moments were excruciating. I experienced her anxiety, or panic, or hesitation as if they were my own. In other words, I empathized with her.

It was also ironic for me in an even bigger way. I’m the reason you can’t have a conversation about DevOps without empathy coming up. I’m the person who introduced the idea that empathy is the essence of DevOps. I give talks, run workshops, and coach teams on how to center their work around their customers’ needs and goals beyond the context of being a user of your product or service. I am incredibly proud of the fact that people you might expect to primarily care about CPU’s and security patches are making empathy the heart of their movement.

So please don’t hire or include or accommodate us out of pity. Do it because you recognize how amazing we are. We represent the very best that our world has to offer. We can see things and make connections you can’t. We have strength and resourcefulness that you don’t. We can take your business where you couldn’t without us. We are magical beings, and we deserve your love and care and understanding and respect…and empathy.

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I help SaaS delivery teams & executives meet the demand for continuously evolving value & dependability. https://www.sussna-associates.com

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