What Is Light Sensitivity Like for One Autistic?

Photo © Jasper Nance | Flickr / Creative Commons
[image: Photo of lightning exploding in a purple night sky above silhouetted conifer trees.]

M. Kelter
theinvisiblestrings.com

I've had a life-long aversion to lights. I wanted to share what this means in terms of the subjective experience, and how this sensitivity generally seems to operate. The concept of a sensory aversion is probably self-explanatory, but it can include more subtle effects that may not be as apparent. I've noticed two primary factors that can cause my eyes to feel pain (no surprises here): brightness levels, and sudden changes in lighting.

What are the types of "pain" involved, specifically? This can vary. Certainly an intensely bright light can cause a sharp pain, but that's probably true for many people. Let's define "intensely bright" as something akin to a camera flash. That can cause a sharp, stabbing pain, and that pain can persist for minutes or hours. It's worse in the moment of the flash, and slowly fades.

Sharp pain isn't the most common eye discomfort I experience, though. The kinds of lights that I come across most frequently—lighting in a room, for example, or overhead lights in public spaces like a grocery store—tend to create a dull, persistent ache. The pain is like a warm burn that hurts in a lasting, nagging way. The pain isn't as intense, but it is draining. That seems to be the biggest negative impact of my light sensitivity, even more than pain: the more my eyes experience a lasting ache, the more my energy level and mood plummets.

In settings where I'm unable to control the lighting, I'm basically on a timer. At some point, I'm no longer going to be able to think clearly, or have the energy left to complete tasks and function. Almost every action I might take in the course of a normal day involves mentally calculating what the lighting will be like, and how long I will be able to tolerate it. Trips to the store, social events, driving during the day and so on: any activity requires forethought regarding lights and the inevitable energy/mood crash. Again, the pain is uncomfortable, but it's the impact on my energy level that creates the biggest hurdle to daily functioning.

The other factor at play with this sensitivity is sudden changes in lighting. Even in locations where the lighting is not too bright, sudden changes in lighting will create pain and a few minutes of blurred vision. This can happen when lights are suddenly turned off, or on or when I'm walking between rooms that have different levels of brightness.

If one room has comfortable lighting and I walk into another room that also has comfortable, but different, lighting, the change alone is enough to trigger pain. It's more in the category of "dull ache," but it's an unwelcome pain and usually results in at least a few minutes of impaired vision. This also takes a chunk out of my already-in-short-supply energy level.

Also, the visual disorientation can often lead to physical mishaps. It basically looks like clumsiness, but it's more specifically about the change in brightness level and blurred vision. Tripping over unseen objects, knocking over lamps, stumbling into walls—I have a long standing habit of exiting a dark theater into the brighter lobby and plowing directly into a crowd of people: this is all a reliably embarrassing byproduct of the issue with abrupt lighting changes. (For better or worse, I've learned to pretend-laugh and feign nonchalance when these things happen, since people rarely understand what's really happening and think it's funny.)

At any given time, I have to pause and give serious consideration as to whether or not turning a light on or off, or walking to a different room, will be worth the discomfort. I think for most people, this can seem like a minor thing, but in the course of a day, even minimal differences with lights can add up to a substantial impact.

One side note: in addition to pain, lighting discomfort is usually accompanied by a visual effect, a imprint of the light that can hover in my vision for several minutes, sometimes hours. Visible bulbs for example, or rays of light from windows or other sources, can imprint a visual "memory" of that light in my vision, and it can take some time for that imprint to fade. I'm sure there is a more scientific way to describe this, but subjectively, it's like a bright little ghost that stings my eyes for as long as the impression lasts. It's not uncommon to go to bed each night, close my eyes, and spend 20 to 30 minutes waiting for the day's accumulation of light imprints to fade. Lights can both make me tired, and make it hard to sleep.

What helps manage sensory pain like this? Honestly, not a lot, but there are some measures that provide a degree of comfort. Pretty much all of them are what you would expect.

Wearing sun glasses doesn't eliminate the pain, but it does function as a kind of dimmer. It turns the discomfort down a notch or two, which can make a meaningful difference when it comes to energy levels and mood. I wear prescription transition lenses that darken in response to sun light. That helps. A little. (I wish I had less obvious things to say here.)

This second strategy is not recommended, because it involves a major shift in life style—but I personally decided to work overnight jobs as much as possible. For the first 15 years of my adult life, I exclusively worked graveyard shifts that allowed me to sleep during the day and be more active during darker, more comfortable hours. Again, this is not recommended and is not always an option, but I just decided that it was necessary in my case. The change was beneficial in terms of light issues, but it didn't do great things for my social life. There were other downsides; sensory aversions involve a lot of lifestyle choices and cost/benefit analyses.

There are more shades of discomfort and pain-triggers than I can go into here, as this is just a brief overview of light sensitivity, from a subjective angle. It goes without saying: other people with this issue may very well experience it in a different way. I can only speak for myself and hope that sharing this information is in some way useful to those wanting to know more about the day-to-day impact of sensory issues.

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Ultra Testing: When Companies Actively Recruit Autistic Employees

M. Kelter
theinvisiblestrings.com

Ultra Testing is a New York-based tech firm that was founded on the idea of incorporating autistic differences into their work ethos. At a time when an estimated 80% of adults on the spectrum are unemployed, Ultra Testing is using attribute metrics and other non-traditional hiring practices to recruit autistic employees. A 2016 Recode article reported that 75% of the company's employee base identifies as being on the spectrum.

I recently communicated with the firm's co-founder, Art Shectman, about how the company began, the value of ditching traditional hiring practices, and what employers need to know about developing a neurodiverse workforce.

M: Regarding Ultra Testing's decision to focus on hiring autistic employees: can you describe the origins of this idea, both generally (how the idea came about), and specifically (how you actually went about recruiting and bringing in folks on the spectrum?)

Art Shectman | source: Twitter
[image: White man in dark suit jacket, posing in
front of a summer-foliage wisteria bush

Art Shectman: My co-founder Rajesh Anandan is my hero, my MIT schoolmate, and fraternity pledge brother. He's the one person I know who's chosen a path of philanthropic and foundational social impact work, and he works every day to make the world a better place. In his travels with UNICEF he saw many children and disabled folks discarded, and living very difficult lives. He had a theory on sustainable change, that if you could align the extra abilities that sometimes accompany disabilities with a competitive advantage, you could create a competitive business and a job creation engine.

We had dinner, and we're reviewing a list of disability, size of population and extra ability and possible career alignment. That list was compiled by a  strategy firm called STAX, run by our first supporter, Rafi Musher, a great philanthropist and impact investor. I saw Autism and Software getting on the list and as I also run a software engineering firm and buy QA services. I said "let's give it a try." Three days later, we hired some testers and gave it a rip, and the results were great. Then we set to work to operationalize that early success into a scalable repeatable differentiated service provider.

The recruiting process at first was to call GRASP and ASTEP for referrals. Over time, we've built a network of some 200 "nodes," where we hunt for talent on the spectrum. We have a community manager who is on the spectrum, and who helps us build that network out and helps us coordinate candidates.

Once we had a process for sourcing candidates, we had to build an attribute and simulation-based set of recruiting tasks that try to leverage the most current talent research—which mostly says traditional interviews are junk. It's been a unique challenge to make it all work, but really it is a system or set of behaviors around recruiting that would apply for neurotypical and neurodivergent folks alike.

M: Work places tend to develop a distinctive office culture over time, though if I understand correctly, Ultra Testing employees work remotely. Are people doing their jobs independently, or is it more of a cooperative, interactive scene?

Art: We have rich interactions every day with Engagement Managers, other testers and on our corporate Slack channels of all varieties. The culture is extremely interactive and collaborative.

M: Does Ultra Testing have an "office culture"? I wonder if this concept looks any different when many of your employees are autistic. If you could paint a picture of what it feels like to work at Ultra Testing on a daily basis, I would love to hear that.

Art: There is an amazingly rich corporate culture. It looks very much the same as any other culture, folks are serious, silly, insightful, and a whole host of other emotions that you might find anywhere else. Above all our team has a culture of collaboration over accommodation, and we are focused on creating a neurodiverse space where we embrace our differences. It's a fun and caring place to work. If we succeed we want people to have options of where to work, and to stay at ULTRA because it's a great place to work.

M: There are ongoing concerns in the autism community about the way the media presents any job for an autistic as a positive thing, regardless of whether or not the work is actually meaningful or valuable to the autistic employee. I think people are hoping to see more of an emphasis on good jobs, not just busywork that others may not want to do.

Art: I disagree to some degree here. I feel that there are a spectrum of jobs that are great fits for the spectrum of folks on the spectrum. Where do I agree is that there is a knee jerk concept of what those jobs should be (busywork).

While there are many jobs regardless of whether you are on the spectrum that are busy work, a job still brings empowerment and self-sufficiency in a way that being unemployed does not. There are neurodiverse folks who are happy to do all kinds of jobs. With 1MM or so folks on the spectrum who are readily employable, any job where an employer is embracing neurodiversity (not accommodating it), and where a candidate wants the job, and has a natural propensity to do that job, is a good job in my opinion.

I do take your point, and we fight the general media bias all the time. We created the DifferentBetter Challenge to try to shift the discussion to competitive advantage, and away from human interest, for many of the same reasons.

This is somewhat of a loaded question, and there's a personal bias there about "meaningful" and "fulfilling." However, that said, I'd agree that a person should have employment options and should be able to have a job that they find meaningful and fulfilling. Maybe I'll defer to a quote from a recent neo.life article about Ultra Testing:

"Now the fact of his employment has become routine for Cha. When asked whether he plans to stay on, he says, simply: “The work is interesting, and I like the people. As long as those two conditions apply, I will be here.”"

M: I know Ultra Testing does regular satisfaction checks with employees. Can you discuss that—why Ultra Testing decided to perform satisfaction checks, and how you ensure that they are meaningful and not just a token effort?

Art: We decided to do it because there is documented research on the productivity costs of team happiness, and how it pays to measure and track it. We've evolved our survey over the years to gauge the many facets of anxiety and job satisfaction that our teams have taught us are meaningful, through their survey responses.

The only way to ensure the responses are meaningful is to really care about them from the most senior level down, which we do, and then to make a culture and habit of responding to feedback. If the staff thinks feedback isn't heard or acted upon, they stop giving it. If they feel they don't have a sense of agency to impact their environment, they stop trying.

Most of our staff need to be coaxed out of their shell, and our super supportive and caring culture helps us do that. Many employees have had experiences where their differences were a source of stress, conflict and ridicule. It takes time to feel comfortable sharing and embracing differences, and realizing that we are all building the company together, and that their feedback is welcome.

M: I read that you tailor hiring practices to a variety of autistic differences (for example, you offer alternatives to traditional interviews, and do not emphasize a need for prior work experience). At first glance, these seem like genuinely beneficial practices that many businesses could replicate. Help me understand employer thinking about this. What are the barriers that would make it difficult for other companies to engage in similar efforts and find alternatives to old school hiring methods?

Art: Folks just can't let go of tradition, even when the research says people are terrible at interviews, and suffer nearly insurmountable first impression biases. It also takes work, measurement of data, and testing and learning and reconfiguring until you get to role-specific practices that help you recruit in non-traditional ways. Most bigger companies do this, but they haven't expanded their programs to include neurodiversity yet.

M: What would your advice be to other companies, about creating mutually beneficial spaces for autistic workers?

Art: Recruit for unbiased attributes that make an employee successful in the job. Then exercise and build collaboration over accommodation.

M: On a personal level, have you learned anything about autism from your experiences at Ultra Testing that you didn't know before? Popular culture generally offers a distorted view of what autism is really like, so I was wondering if your view of autism has evolved in any unexpected ways.

Art: It has, but I'm not qualified to have an opinion here. I would just say that I'm continually reminded that our original theory that our differences make us better remains true. I'd say my views on the power of a neurodiverse workforce are what have evolved the most, and it is a really powerful thing.

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