Zosia Zaks, Asperger’s syndrome advocate, and a member of the International Union of Operating Engineers Local 825, was one of my best technical communication students at Polytechnic University in Brooklyn, New York, and is now a friend and respected colleague. Her book, Life and Love: Positive Strategies for Autistic Adults, is an eye-opener, not just because she so clearly describes the effect of autism on the senses, but because of her matter-of-fact approach to dealing with the problems and strengths of autistic people.
In the introduction to the book, Zosia describes the “autism spectrum,” which she says ranges from classic autism to Asperger’s syndrome. In classic autism, the affected child shows serious cognitive difficulties as well as developmental delays in walking and talking. A high-functioning autistic person may have developmental delays and cognitive difficulties, but can function fairly well in the non-autistic world. Engineer and author Temple Grandin (Thinking in Pictures) is considered to be a high-functioning autistic person.
A child or adult with Asperger’s syndrome, on the other hand, has no developmental delays and often does well in school, but may be lacking social skills. Rowan Atkinson’s comedic character Mr. Bean often behaves like a person with Asperger’s syndrome.
Zosia’s book isn’t about medicine and syndromes, but about what it’s like to have a brain wired differently from most other people. For example, some autistic people have trouble changing their routines. In a recent talk, Zosia mentioned a friend whose route to work was interrupted by a detour for road construction. He couldn’t get past the detour to get to work. He almost lost his job, she said, until someone intervened and explained the problem to his boss, who let him work from home until the construction was finished.
Autistic individuals are often overwhelmed by their surroundings because they can’t filter out sights, smells, and sounds like “neuro-typical” individuals do. In Chapter 1, “Coping with Sensory Inputs,” Zosia explains how autistic sensory processing works. “My senses seem to work on a quota system,” she says. “I only have a set amount of energy or capacity to deal with incoming sensory information…What happens when [that capacity] is used up? Basically, I can’t tolerate receiving any more sensory information…I need time to calm my nervous system. Usually, this means retreating to a quiet, dark spot where I will not be interrupted. Even kind and gentle suggestions like ‘Would you like some help?’ continue the sensory depletion rather than helping matters. It’s best to leave me alone…This is what autistic people call a sensory meltdown or being ‘overstimulated’” (pp. 8-9).
Chapters 2 and 3, “Maintaining a Home” and “Living on Your Own,” explain in detail what you have to do to live in your own home—for instance, setting priorities for chores, starting with sanitation (taking the trash out weekly and making sure your kitchen is clean enough to cook in), safety (getting the landlord to fix wires hanging out of the ceiling fan), body care (taking regular showers), and everyday objects (organizing piles of clothes and newspapers).
Zosia describes zone maps and absolute spots as a way to keep clutter under control. A zone map is a drawing of your home divided into kitchen, bedroom, bathroom, and other zones for which you set rules—for example, in the Home Office Zone, her diagram says “No food!” The zone map also shows “absolute spots,” such as a small table near the front door where you always leave your keys (it also helps to pin up a picture of keys on the wall).
In Chapter 4, “Shopping,” Zosia explains that grocery shopping is so difficult that, until she developed shopping strategies, she would often just grab whatever was nearest the cash registers, which was usually unhealthy junk food.
However, many neuro-typicals also have trouble with supermarkets (and keys), and her strategies might be useful for us, too. For example, to make sure that she buys the healthy food she really wants, she brings a map of the store with the items she wants marked on the aisles. To reduce the glare of the indoor lights, she suggests wearing dark glasses, and to cut down on the background noise, listening to a Walkman or iPod.
Chapters 5 to 7 in Part 1, Life, address transportation and travel, healthcare, and work. For dealing with a hospital stay: “Don’t forget an emergency card that states your name, your address, and your diagnosis, and any special behaviors or sensitivities that you have…For example, if you are in a lot of pain, you may not be able to explain why you need to keep your sunglasses on. The nurses may try to take off your sunglasses thinking they are helping you. Or if rocking back and forth soothes you, this is also important information for emergency workers to know so they do not misinterpret your behavior and falsely assume you are on drugs, for instance” (p. 125).
Part 2 of the book is about love and emotion, including topics about dating on the spectrum (dating other autistic people), spectrum/non-spectrum relationships, keeping safe (avoiding sexual violence, for example), gender issues, friendships, disclosing your diagnosis, and invisibility and self-esteem in the autistic community.
This is not a “poor pitiful me” book. Rather, Zosia shows how autistic people learn to cope using “strength-based therapies” that help them skirt their difficulties and build on their strengths. During a recent book-tour lecture, Zosia said, “We’re direct and honest in our language—we don’t understand sarcasm and don’t play games—and for that reason we can communicate more easily across cultures. We connect with animals. We’re curious and won’t stop at anything to get an answer. We’re passionate about our interests and love learning. We have robust memories and we think in pictures,” which is why the supermarket map works so well. In terms of jobs, Zosia said, “we’re great at shipping-and-handling jobs, organizing factories, scheduling rooms, sorting, and anything requiring visual information.”
But what do Zosia’s experiences and ideas tell us about usable and accessible design? I believe that they reinforce what we already know: create logical navigation strategies, avoid flowery or metaphorical language and inside jokes, and cut down on the buzzy, smashy, bangy stuff. However, what Zosia’s book does best is show us a different way of seeing the world. Once you’ve looked at a hospital—or a friendship—through her eyes, the inexplicable behaviors of friends or acquaintances suddenly make more sense. Also, ignoring the filters that we use to block out most of what’s around us, albeit briefly, can be a real trip, and I do mean that in the Sixties sense of the word