Friday, September 14, 2018

What Is Light Sensitivity Like for One Autistic?

10mm Lightning
Photo © Jasper Nance | Flickr / Creative Commons
[image: Photo of lightning exploding in a purple night sky above silhouetted conifer trees.]
M. Kelter

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.

Thursday, September 13, 2018

I Might Be You / Neurodiversity: A Review of Two Books

[image: Cover of the book "I Might Be You,"
showing two seating white women facing
and engaging with each other.]
Maxfield Sparrow

I Might Be You: An Exploration of Autism and Connection (2012) By Barb Rentenbach and Lois Prislovsky; Audio version (2013) read by Lois Prislovsky PhD and Ariane Zurcher

Neurodiversity: A Humorous and Practical Guide to Living with ADHD, Anxiety, Autism, Dyslexia, The Gays, and Everyone Else (2016) By Barb Rentenbach and Lois Prislovsky; Audio version (2016) read by Chad Dougatz, Lois Prislovsky PhD, Carol Riggs Holloway, John Bond, and Jery Yarber

I read “I Might Be You” in 2014 and loved it, but never thought to review it back then. When I discovered that Barb Rentenbach and Lois Prislovsky had a second book out, I got it in an Audible version and, on a whim, decided to get the Audible version of “I Might Be You” as well, and re-read it before reading “Neurodiversity.” I am so glad I did, because the Audible versions of both these books really shine.

Barb Rentenbach is an autistic woman with unreliable speech who types to communicate. Lois Prislovsky is Barb’s therapist and friend. The two alternate chapters in “I Might Be You,” talking about autism from Barb’s lived experience and Lois’ experience as a professional and friend. While Barb chose Ariane Zurcher to be her voice in the Audible book, Barb’s own voice comes through the words loud and clear. Barb is brilliant and playful, simultaneously jokingly boastful (after all, if you have such fabulous hair wouldn’t the world want to know about it?) and humble, refusing to take herself too seriously—and advising readers to do the same.

Anyone who might be afraid that Lois would talk over Barb need only read or listen to a short excerpt to realize that Barb has a dynamic, funny, larger-than-life personality that can’t be pressed down or spoken over. The hours I spent with Barb’s voice, as rendered by Zurcher in the first book and Chad Dougatz in the second were a joyful encounter with a woman I came to admire and love. Side note: given Barb’s playful comment in the first book about not having spent time as a boy… yet…I was delighted that she chose a masculine voice to read her words in the second book.

As far as I know, Barb is not trans. But she describes the ways she is not entirely tethered to her body, not the way so many typical people report. It is clear to me that Barb can—and probably does—“visit” being masculine in ways I can only envy. Barb knows she is connected to the “marshmallow” body, as she laughingly describes her zaftig frame, butt she also speaks lucidly of mystic transport to realms that are beyond words and beyond physicality. She calls it “going inside her autism,” and though it is hard to wrap words around a state of being that is beyond words, she does a great job of introducing us to the splendor of her world.

But Barb doesn’t give a one-sided view of autism. She doesn’t mince words when she describes herself as having “autism: the hard kind.” And she doesn’t hide her struggles. Barb writes openly about biting herself, biting her beloved Lois, screaming, breaking things, and even smearing shit. She knows how she comes across, even though she can’t help coming across that way. Barb describes herself as being “disguised as a poor thinker.” While she claims that she’s done trying to convince the people who say that her facilitated communication is some kind of puppet show that she is really “in there,” these books are a testament to just how in there Barb is.

I know I keep going on about Barb and saying nearly nothing about Lois. I suspect Barb would find that amusing as she’s always conducting a bit of a stand-up routine using Lois as her straight man / fall guy. Barb would probably laughingly say that I’m focusing mostly on her because Lois is sadly just not as interesting. I assure you that Lois is plenty interesting and gives a lot of great tips for other teachers and therapists, but let’s not try to kid anyone: Barb is the undisputed star of these books.

There are some repeated passages from the first book in the second book. Barb explains the two-fold reasoning: repetition aids learning and she and Lois really want you to learn that autistic people who don’t speak or are “disguised as poor thinkers” deserve a presumption of competence. You could assume someone is “in there” just as easily as you could assume they’re not, but the more respectful and human choice to make is to presume competence at all times.

The other reason for the repeated passages is that Barb types so slowly that some chapters took many months to write. The first book took ten years to write and the second took “only” four. Barb types with one finger. She’s aiming toward fully independent typing (which should hopefully shut up the remaining naysayers) but it’s really hard, and takes a lot of energy to focus. Over the years, Barb’s work with facilitated typing has improved her skills to the point where she just needs a hand pressed against her back to get her body-machine moving and typing. It seems a small thing—a hand on the back—but it makes all the difference when it comes to Barb’s struggle against apraxia.

Barb types only a few words per minute, and points out that when writing is so slow and difficult it makes sense to recycle some of the words. I agree and I felt that the amount of repetition from one book to the next was not too much for me. The second book was very much worth getting, with enough new material and re-contexting of old material to make me feel satisfied that I’d gotten a new book with its own theme and purpose.

The first book, “I Might Be You,” is more of an introduction to autism, while the second book, “Neurodiversity” tells more comic stories and has more advice for all sorts of neurodivergent people. Since Lois has ADHD and dyslexia and is a lesbian, Barb jokes that Lois has more to say in the second book, having more neurodivergent traits than Barb (who laughs that she gets to be the normal one for a change).

People sensitive to language might struggle in some points during both these books. For example, Barb doesn’t do anything to soften the R-word. I wondered if she’d gotten criticized for that because the second book opens with a mention of political correctness and a warning that the book would NOT be politically correct.

I can’t speak for anyone else, of course, but I have no quibble with Barb’s and Lois’ choice to be blunt with word choice. Were there things that would be “politically sensitive” in some circles? Oh, yes. Was there any disrespect toward any human being? Well, other than the slightly mocking response Barb wrote to the man who claimed she couldn’t have “the hard kind” of autism because she wouldn’t be able to read, write, or think (she decided the best pseudonym for him was a tittering “Dick”), I spotted no disrespect toward anyone. In fact, Barb expresses a spiritual love for all humanity (“God cares about us all through us all”) and a love of the gifts autism has brought her (“Autism is my prism, not my prison”).

Speaking of spiritual matters, I would love for Barb to write a book entirely about spiritual matters. I’ve already mentioned that she has a mystic’s vision. Barb also has a theologian’s academic knowledge of religion. I found her discussions of spirituality some of the more fascinating passages.

I heartily recommend these two books as well as the “Loud Mute Radio” show Barb and Lois host. You can learn more about Barb and Lois and listen to Loud Mute Radio at Barb and Lois’ website: