I’ve been thinking lately about the difficulties of having a misunderstood, invisible condition. Many people do not understand how autistic people see the world, partly because of the misinformation out there, and partly because our condition manifests itself largely in the privacy of our own brains. Certainly, we do things people can see, like stimming, or melting down, or being out of sync in a conversation, but most people don’t understand what underlies our behavior.
On Tuesday, I had a difficult experience in a store in my town. Ashlynne and I had decided to go out for some mother-daughter time, and at about one o’clock, we set off for the bead store. Usually, I wear my sunglasses and Sonic Defender earplugs when I go out anywhere, but in my excitement about going out on the town with Ashlynne, I forgot.
We had chosen to go to the bead store because the place is very spacious, and I thought I’d look for some interesting beads for my art projects. Unfortunately, I’d forgotten that they play Very Loud Music there. It was so loud that when we walked in, I immediately stopped and said to Ashlynne, “Wait, wait! I need my earplugs! Now!” Fortunately, I keep an extra pair in my bag, but in my agitation, I couldn’t find them. Ashlynne offered to hold the bag open, and I finally located them. My hands were shaking, but I got the earplugs in.
The music was so loud that I could still hear it at a high volume, so I asked Ashlynne to ask the man at the counter to turn it down. He did. A little. I could still hear the music, but it was at a fairly reasonable volume, so I kept looking for beads. However, I noticed that I had begun to feel afraid. I stopped myself for a moment and asked myself whether I was afraid of what might happen (i.e. that I would become painfully overloaded before I got out of there) or whether I was afraid of what was happening at that very moment. I decided that the fear was more about the future than the present, so I kept on. I wanted to see how the experiment would work out.
Listening to music and talking to someone at the same time is generally impossible for me. Listening to music and and trying to think straight about anything is almost as big a challenge, and about ten minutes after entering the store, I realized that I’d reached my limit. I just wanted to cry. Why do people have to play such loud music? Why is that fun? If the place were quiet, I could have spent hours there. But it wasn’t quiet, so I took the beads I had found and went up to the counter to pay for them—at which point the man at the counter said, “Didn’t you mark down how much each set of beads costs?” Oh. My. G-d.
I said, “No, I didn’t see a pad and pencil for that,” so he gave me one. And then, I had to go back around this big store looking for these tiny beads, and I thought I was just going to break down and weep. I felt so dumb, so weak, so useless, so victimized. I know it’s just neurology, but that’s how I felt. With Ashlynne’s help, I got all the beads priced and paid for. When we finally got outside, I said to her, “I would really like to salvage this afternoon, so would you just hang out with me a bit until I calm down?”
She said, “Sure, mom, no problem.” So I stood outside a quieter place and did joint compressions for a few minutes. It really helped. From there, we decided to go to the thrift store which, by comparison, was extremely quiet. We had a really good time there. I got a tank top, some trinkets for my art, and a couple of shawls that I can use for tablecloths. I said hi to a couple of people I know there, and it felt good to see them. As places go, the thrift store is the friendliest place in town for autistic me. Even before they knew I was autistic, the staff always encouraged me to choose the tasks I wanted to do. I’d like to go back to working there an hour a week, if I can manage it. I don’t think I could commit to coming in on the same day each week, but I doubt very much that it would be a problem for the staff.
Anyway, after the whole experience at the bead store, I began to think about what the world would look like if people had to take into account our disabilities. What if every public building and private business had to make its environment accessible for autistic people? If I could create such a law in my local community, here is how the law would read:
To make our town accessible and welcoming for autistic people, all citizens, public buildings, and private businesses must adhere to the following rules:
1. All public buildings and private businesses are prohibited from having background music, and all TVs in said locations must be turned off. Using an iPod, portable radio, or other device with headphones is an acceptable alternative for individuals who wish to hear music or listen to the radio while outside their homes, so long as the volume is not turned up so high as to allow another person to hear it.
2. Aisles in any building must be wide enough so that two people can occupy opposite sides of an aisle without inadvertently touching each other.
3. When in a public building or private business, people must use their inside voices and refrain from small talk. When outdoors, people must refrain from loud cursing, the uttering of racial and ethnic slurs, and other forms of aggressive verbal behavior.
4. Cell phones are hereby banned from all buildings within the town limits, with the exception of each person’s private domicile or car (so long as said car is not moving and the windows are closed). If one is not within a reasonable distance of one’s home or car, using a cell phone is permissible in a public bathroom, so long as the call is limited to not more than two minutes.
5. Each place of business must post the food smells or other fragrances one may encounter upon entering said business.
6. If any resident wishes to run a lawn-mower, chainsaw, or other power tool, he or she must give at least one week’s notice to allow his or her autistic neighbors to make plans that do not include sitting on their front porches and enjoying the afternoon.
7. Every restaurant must have a quiet zone in which autistic people can sit and eat in peace.
8. Every professional must make every attempt to see patients and clients on time. If said professional is running late, he or she (or a member of his or her staff) must contact the patients or clients and apprise them of that fact.
9. Every building must have a separate, quiet waiting room for autistic people.
10. No autistic person shall be detained or harassed for stimming in public.
I’m sure that there are many more clauses one could add to such a law, but these ten points would be a very good beginning. 
© 2009 by Rachel Cohen-Rottenberg
what a marvellous list! I have always found loud music hard to bear, which makes it hard to go shopping in certain stores.. It’s worse when it’s a style I dislike, like rap, but even if it’s something I like, beyond a certain level it sounds grotesque and distorted and I don’t see the point in it. Fortunately my kids know that I have my limits and I let them know when I’m getting dangerously close.
Life would be so much pleasanter if this list was implemented. Only thing I would think to add would be something about smoking — another thing that I don’t really care what choice people make, but please don’t do it around me, thank you very much.
If only the world could accommodate everyone! I was knocking on the door of our neighbors house at 10 pm a few nights ago. Their darn dog had been barking for 3 days straight. My husband hadn’t slept since the dog started barking. He has no way to “filter” the noise. Let me tell you, Jason had gone squirrelly on me. Not only was he in overload he was ANGRY. I decided it best to go over and see what I could do. No need to have him involved or they would have gotten, as you called it, the “Hi! I’m Jason, F’ You!” (I borrowed your statement from a previous post) =) It turns out they went on vacation and left their dog at home in the care of a friend. While the friend was not at their home, the dog door was left open. The dog is a Jack Russell so you can figure how it behaved.
Unless you live in the Aspie world how would you know those kinds of things really effect someone? Our neighbor has no idea that Jason really didn’t sleep. It was not a figure of speech or a statement used to increase drama.
One of your other readers, Gavin, wrote a blog on the topic titled “The Silent Scream” and he was spot on. Well, from the NT side, I have my own “Silent Scream”. I am trapped in both worlds. I am left to be the translator in a world where I don’t always know the language. =)
I always make mistakes in the supermarket, because of the loud music and screaming kids. I can’t seem to impress upon my NT girlfriend how stressful shopping is for me. It doesn’t help that I also have ADD. Laundromats are also unpleasant and challenging. More screaming kids and loud TV’s. (I don’t dislike children per se, but nowadays they’re being raised as feral by negligent parents who don’t teach them to differentiate between indoor and outdoor voices). I often pay more to have my laundry done for me, so I don’t have to deal with it.
JDL- You are making me laugh! Even if you didn’t mean to be funny. I laugh at the familiarity of your words. My husband truely feel the same way about children.
(Minor subject change): May I ask if you have difficulty with your surroundings being “busy”? Supermarkets are painful for my husband because of all the colors, lights etc. An NT interpretation of quiet is much different than an Aspie. I think of quiet as being few people, less crowded. I never even considered that all the colorful boxes, displays and goings on could have an effect. I am truely interested in your, and all, thoughts about it.
re: the Law
it sounds lovely. it also sounds a lot like the 1950′s. not too bad, i think i’d like the 50′s, except for the racism, sexism, homophobia and smoking. everything else sounds MAHvelous. mmmm, push lawnmowers, front porches, no celphones, fewer people, politeness and sense of civic duty, fewer cars….
also, Jennifer and John: i have the same issues with supermarkets and similar. i do find that fluorescent lighting is one of the biggest culprits for making a space uncomfortable to be in.
i’m getting in the habit of doing my shopping early on saturday mornings, or as late as i can in the evenings, when things are literally quieter and less busy. in my early twenties, i used to have the best time cruising the local safeway at 11:30pm, with my college room-mate. she would always stop by the lobster tank to apologize on behalf of her species
There are times in my life when I’m truly grateful that I’m deaf. It’s like having permanent ear plugs. I’ve got 50% in one ear and 25% hearing in my bad (useless) ear. Most of the time, noises, dogs, even chainsaws don’t faze me. On the few occasions that they do, they’re also driving the NTs up the wall. When I need to sleep in loud (snoring) circumstances, I simply roll over onto my good ear… and all is silent.
That said… The shop keeper was downright aggressive and this probably would have tripped at least some aggression on my part. I’d have told him to turn the music down – and I’d have made at least a little scene if I really wanted to stay in the shop but the beads… oooh ….no way… I’d be saying … “You’re the shopkeeper, YOU tell me how much they cost”.
Actually, most of the time I’m very very passive and I’ll take “hits” from shops who accidentally overcharge me etc… it’s only when I detect aggression (or a deliberate restriction of my rights) on the other side of the counter, that I up the ante.
JG: As I approach 50, I am losing wy hard-won tolerance for “busy” surroundings. As a child I had a hard time with them; I acculturated but am regressing a bit. The harsh lighting doesn’t help, either.
Again, children can be delightful. But I detect a deterioration in civility these past few years that cuts across all ethnic and socioeconomic barriers. Running and shrieking indoors should be unacceptable.
But truth be told, I have difficulties modulating my voice. However, I was raised correctly- the voice problem is an Aspie thing I have. When pointed out, I sheepishly apologize and lower my voice.
Sensory problems get little to no respect, aren’t leant much creedence by the public at large. People are used to concepts of blindness & deafness (and so on), but not someone who decompensates (melts down, becomes so distressed as to lose functioning in the moment) as a result of the stimuli in one’s environment (such as fluorescent lights, unbearable noises, panic-inducing smells, etc.). Having undeniable sensory “over-reactions” myself (within multiple modalities), I’ve learned these causes & effects are connected-even though most people are skeptical/unaware of the whole field of “sensory modulation/integration/processing disorders”.
Worthy website with a great description/metaphor (spoon theory) to make sense of invisible/chronic condition (for those who don’t “get it”, when one tries to explain that not all challenges are obvious to an outsider, but that doesn’t make the problem any less “real”). There’s a pdf link & a php link in middle of page.
http://www.butyoudontlooksick.com/the_spoon_theory/
Site for women with chronic illness, yet it’s got a great fiesty attitude. As a person with “mental” problems (rather than so-called purely “physical” difficulties), I found the articles here heartening nonetheless.
http://www.chronicbabe.com/
2 articles (which I’ve read & found galvanizing/validating of my perceptions), by Cal Montgomery:
About what’s considered “disabled” in our culture-
http://www.raggededgemagazine.com/0301/0301ft1.htm
About disparity in accommodations for those with differing sorts of “barriers to access”-
http://www.ragged-edge-mag.com/0501/0501cov.htm
I encourage folks to look up these items (even though the pieces don’t directly deal with ASD), because I could identify with much of what’s written & they helped strengthen me in my struggle against isolation/marginalization (being scapegoated).
8. Every professional must make every attempt to see patients and clients on time. If said professional is running late, he or she (or a member of his or her staff) must contact the patients or clients and apprise them of that fact.
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I think everyone would appreciate this! I never show up to an appointment on time as i know i’ll just sit in a dismal little room for 20 minutes waiting….
I (mostly) love this list. I actually don’t have a problem with most background music, it can give me an alternate focus in situations where there is too much “business”, but I do know others who have no tolerance for it at all. I do find, however, that if it’s a style, or even a particular song, that I’m not fond of, that it can hurt rather than help. I especially agree with the cel phone issue. Almost nothing bothers me more than feeling constantly surrounded by people yelling into their phones, seemingly about nothing. I never answer the phone at home, that’s what answering machines are for, and would be terribly jarred to have to answer one when I’m out in public.
As to supermarkets, I work in a large grocery store. Fortunately for me it is open 24 hours, and so I can usually work late evening or early morning, when it is much quieter. Another plus, mine is more open, with high ceilings, and softer lighting than many, as well as being one of the least busy in town.
I would add to your list, however some line allowing us to duct tape the mouths of any child whose parent allows it to scream incessantly.
i wanted to let you know i loved your article about Challenging the popular myths about Autism so much i put up a short reference article to it on NowPublic.com:
http://my.nowpublic.com/culture/challenging-popular-myths-about-autism
thank you so much for sharing with the world the facts that need to be addressed, openly and accurately, to dispel these horrible myths. your story made me cry in “emphatic empathy.” finally, another voice other than my own… stating the same things i’ve been saying…
THANK YOU
Thank you for giving my article and post wider coverage. It’s so important to get the information out and to debrief people regarding the myths about autism.