Meeting autism halfway

by Alex O’Neal, Principal Product Designer, Infor Development

Hi, I'm Alex, and I'm invisible, though you might not know it by looking at me. I'm a product designer, and I have invisible disabilities: I'm autistic, and I’m physically challenged. I'd like to talk about why being autistic drove me to participate in launching a new business resource group, (dis)Abled at Infor.

I did not grow up autistic.

I mean, obviously, I did because it’s a developmental condition, but I wasn’t diagnosed until I was in my 30s, by a psychologist I worked for helping autistic children.

Instead, I grew up different: isolated, bullied by students and teachers, extensively tested, and sent to a therapist in 4th grade. Despite all the testing, no one was diagnosing girls in small Texas towns as autistic in the 1970s, so I thought my troubles were all on me. (Learn more about the difficulty of diagnosing autism in girls). I spent every day of school from the fall of 3rd grade until the last day of my senior year editing myself, in a desperate attempt to stop the bullying and fit in. It did not work.

My psychologist-employer told me not to pursue a formal diagnosis or treatment for three reasons: the stigma, the fact it would be a pre-existing condition in a time when that still affected whether you could get healthcare, and because I was high functioning. By high functioning, he meant that I didn’t stray too far from the norm. By the norm, he meant what we would call neurotypical behavior today.

But what both he and I didn’t understand was that even as a high-functioning person on the spectrum, I was inflicting harm on myself in the form of stress. French author Albert Camus observed that “nobody realizes that some people expend tremendous energy merely to be normal.” Being high functioning meant I wasn’t getting help dealing with that stress. It also meant I wasn’t informed enough to be able to grapple with the challenge of a world that too often unconsciously judges the neurologically diverse without even realizing it.

There have been studies of neurotypical perception of people with autism, and it’s amazing how quickly just hearing or seeing an autistic person can turn someone off. These thin-slice judgments—evaluations made in just a few seconds—are persistent and hard to overcome. A 2017 article in the journal Nature studied how same-age peers judged people with autism spectrum disorder (ASD). On 10 factors ranging from likeability and smarts to whether they would want to talk with, sit next to, or live near people in the ASD group, the “ASD group [was] rated significantly less favorable on every item except live near, trustworthy, and smart.” They observed that social ability and social expression were different things. One does not make up for the other.

For ages, I didn’t talk about autism at work beyond academic discussions. When I attempted to speak with family or friends, some got it immediately, but others didn’t accept it because I was too empathetic, too socially adept (if differently expressive). These are all mistaken stereotypes. I struggled with whether to share it as a disability, in part because it felt easy to hide it. It’s invisible. Even with noise sensitivity and bright workplaces and constant distractions and so many other challenges, I could play normal (kind of). And while I knew I had diminished options because of it, I also knew it gave me the gifts that make me good at what I do.

So, I played normal (kind of).

But I’m a designer, and part of my work is designing accessible software for the blind, aged eyes, the color blind, limited motion, and so on. All those people who have every right to use online tools, regardless of disability. It made perfect sense that while they might reach out halfway by purchasing a screen reader, for example, a website should also reach out halfway by making itself screen-reader-friendly.

After what was probably too long a time, I had that classic aha moment: If it was perfectly acceptable for a blind person to ask the world to take on the challenge of reaching halfway to help, it was perfectly reasonable for an autistic person to not solely bear the burden of editing herself in order to be acceptable to the rest of the world.

It was okay to ask the world for it to be okay to be me.

That’s why I’m here. I want other people with ASD to understand that a diagnosis is not just a burden. I want them to know it’s possible to be intensely autistic and still succeed. I want allies to know that when they meet someone whose differences might make for occasional awkward moments, it does not necessarily mean thoughtlessness or disrespect or reduced capabilities. At Infor, we are all on the same side, all living to an ambitious shared set of Guiding Principles, all hoping to make things better for the next person.

And that person there, right in front of you? Or right next to you? They might be invisible, and you just don’t know it because you think you see them.