Improving Autistic Access to "Culture"

Through GRASP's e-newsletter, I got a questionnaire about "cultural institutions" (theaters, museums, art galleries etc.) and what they can do to make themselves more accessible to autistic patrons. The questionnaire was sent by GRASP ally Michelle Marigliano, to help her prepare for a panel discussion at this conference.

I thought it was such a useful discussion-starter that I'm reproducing it here, for any of my readers to answer in the comments:

1. The person answering these questions
a) is on the autism spectrum
b) is a family member or close friend of someone on the autism spectrum
c) other

2. What cultural insitutions do you visit?
a) museum
b) gallery
c) theater
d) garden
e) park
f) other

3. What is helpful before or during your visit?
a) maps
b) website information
c) audio tour
d) information in print
e) other

4. What is unhelpful during your visit?

5. What would you change about cultural institutions that would make them more inviting to attend?

6. Name some cultural institutions that you think offer a pleasant experience.

For me, the biggest issue with museums, galleries and the like is crowding. If a room is too crowded, I can't pay as much attention to the exhibit because I also have to pay attention to all the sound and movement around me, and, when I'm paranoid (which is not all the time; the need to attend to all sensory stimuli equally is constant), I also have to devote mental space to positioning myself strategically so I am farthest from any knots of people. This can be a pretty demanding activity if those knots of people are constantly moving, as they usually are in a museum or gallery.

That happened when I visited the Smithsonian Institution's National Museum of Natural History in Washington; the noise and crowds had been pretty overwhelming the whole time I was there (I made it through one exhibit and part of a second one), but when I left the huge room the first exhibit had been in for the narrow hall the second one was in, the press of people got a lot worse, and I noticed I was losing the ability to speak or think. My entire consciousness was being absorbed by noise and movement, and everything took on a really scary appearance. I stopped looking at the displays, not having the available brain space to understand them, and started keeping to corners and walls, taking temporary refuge until I was able to muster the strength to find my companion and tell him I needed to leave.

What that incident tells me is that the severity of my reaction has as much to do with the available space as it does with the absolute number of people present. I could handle the same number of people in the mammal exhibit, since that was a huge room in which they could all spread out (and in which the open spaces helped me not to feel trapped). I also tend to do fine at outdoor events, like zoos or Renaissance Faires. Movement is also a big deal; I have no trouble going to the theater, even though there are often huge crowds, because they tend to stay put and are quiet most of the time. (I stay put at intermission, though, to avoid that crush). I also go to the Heart of America Shakespeare Festival whenever I can; really, my main barrier to theatergoing is convincing my family members to take me out to plays.

One indoor event that handled the problem of crowding well was an exhibit of preserved human bodies (I can't remember if it was Body Worlds or Bodies Revealed) in Washington DC. What they did was just to pulse the flow of people through the exhibit; one or two parties started the tour at a time, so that the other people would always be a few rooms away. It worked really well, as far as my ability to enjoy the exhibit without the crowds getting to me, and it wouldn't cost anything to implement, as a staff person already has to be there to take tickets. He or she could just perform the additional duty of regulating traffic.

Those are my experiences; what about y'all?

From the "Really Bad Ideas" Vault

From this article in the Kansas City Star, I learned that the National Institute of Mental Health is considering a clinical trial of chelating agents as a potential treatment for autism. (When I searched NIMH's website, the only page I could find for such a study was from 2006. Since the newspaper article mentioned the proposed study was "on hold," and the basic plan sounds similar to that described in the article, and I could find no more recent announcement of a study like this, I suspect that the 2006 plan is being reactivated).

The NIH is also doing a parallel investigation of Na₂EDTA chelation as a potential treatment for coronary artery disease, which has been denounced in Medscape and on the blog Health Care Renewal, to which one of the authors of the Medscape article contributes. There are some differences between the coronary-artery study (titled the Trial to Assess Chelation Therapy, or TACT) and the autism study: TACT is a Phase III clinical trial, while the autism study is a Phase II, and the chelating agent in the autism study is DMSA rather than Na₂EDTA, but I think many of the problems Atwood et al found with TACT are still at work in the autism study, if not aggravated.

The main problem I see as being aggravated in the autism study is the problem of informed consent. Atwood et al claim that the TACT consent form omits crucial information on the risks of Na₂EDTA chelation therapy, and makes no distinction between CaEDTA (which the FDA has approved to treat lead poisoning) and Na₂EDTA (which the FDA has only approved for treating excessive calcium in the blood, and which is to be used with caution in patients with severe heart disease --- this latter would seem to make it an unwise choice for treating coronary artery disease, even if there were any reason to believe it worked).

Here's the FDA's own website on the two EDTAs, and the necessity of clearly distinguishing them:

There are two drugs approved by the FDA that have similar names are easily confused. To add to the confusion, both drugs are commonly referred to only as the abbreviation, "EDTA."

One drug is named "Calcium Disodium Versenate" and is also known by the chemical name of edetate calcium disodium. This drug is approved by the FDA to lower blood lead levels among patients with lead poisoning.

The other drug is marketed as "Endrate" and is also known by the chemical name of edetate disodium. This drug is approved by the FDA for use in selected patients with high blood calcium levels (hypercalcemia) as well as for use among patients with heart rhythm problems due to intoxication with the drug, digitalis.
...

The two EDTA drugs have different approved uses and significantly different effects. For example, edetate disodium is more likely to cause severe decreases in blood calcium levels. A severe decrease in blood calcium levels due to the erroneous administration of edetate disodium has resulted in death, predominantly among pediatric patients, who were to be treated for lead poisoning with edetate calcium disodium. As noted below, FDA has special concerns regarding the use of edetate disodium and is reconsidering the overall risks and benefits of the drug.

The consent form, however, did not mention any of this, referring to the reagent to be tested simply as "EDTA." The special risks of Na₂EDTA, particularly those relevant to people with compromised heart health, were not brought to the attention of potential subjects.

Older patients with heart problems are not the only category of patient to have problems with Na₂EDTA, either. These two articles give three case studies (both articles deal with the same three people) of patients (a 2-year-old girl with lead poisoning, a 5-year-old boy with autism, and a 53-year-old woman with no salient medical problems who was nevertheless being chelated by a naturopath) who died while undergoing chelation therapy. Hypocalcemia played a role in all of their deaths; the little girl suffered cardiac arrest, the woman had a fatal arrhythmia, and the boy's heart was found to be necrotic. (Calcium ions are used to regulate the pumping of the heart; if all the calcium in your blood is being bound up by chelators, it can't perform its regulatory function).

While DMSA is not as dangerous as Na₂EDTA, it is also far from harmless. According to the FDA, there's a risk of neutropenia associated with DMSA and similar compounds:

Mild to moderate neutropenia has been observed in some patients receiving [DMSA]. While a causal relationship to [DMSA] has not been definitely established, neutropenia has been reported with other drugs in the same chemical class. A complete blood count with white blood cell differential and direct platelet counts should be obtained prior to and weekly during treatment with [DMSA].

The FDA also advises that people with impaired kidney function not take DMSA. So the risks here are that it's hard on the kidneys and may make you more prone to infection. It can also leach essential minerals (particularly zinc) from the body, although this effect is moderate in DMSA compared with other chelating agents.

Back to informed consent, this time with an eye to the specifics of the autism study. These patients are a lot more vulnerable than the patients in the TACT, as they are unable to advocate for themselves. The people who do advocate for them, their parents, are often so terrified by the prospect of raising a child with autism that they might think anything would be better than having their child remain autistic. This kind of desperation hardly makes for cool, rational risk-benefit analysis, the faculty for which is a critical part of giving informed consent.

The desperation factor would have to be heightened even above the baseline for autism among the parents of this study's participants, because DMSA and other chelating agents are supposed to remove toxic heavy metals that studies keep showing just aren't there. Chelation is also a pretty radical procedure: you're flooding your body with an all-purpose atom grabber that grabs and flushes from your system all metals, good and bad. At best, you've committed yourself to a regime of supplements and monitoring, and at worst, your bones, heart and immune system will suffer. Children are probably at special risk for growth or developmental problems caused by a lack of minerals. So this is a risky procedure that we have good reason to believe has no effect on the condition it's supposed to be treating in this study.

A Few Words on Autistic Identity and Activism

Shiva at Biodiverse Resistance has a post up about his impending presentation at Autscape 2008, asking commenters for input on the proposed topic: "Autism Rights Activism and Disability Activism."

From the blog entry:

Do you think [the topic is] a valid one for discussion? Do you think that "autistic rights" is just naturally a subcategory of "disability rights", and therefore that the autistic rights movement is simply one part of a wider disability rights movement, or do you think that they are separate - and, if so, why? What about the autistic rights advocates who express the view (for example, ABFH's post here) that autism "isn't a disability"?

I think I am one of the people who don't think autism is a disability --- I typically describe it in conversation as "an alternative way of being human" or "a different cognitive phenotype." In my experience, autism is as much a boon as a bane: my hyperacute senses and inability to distance myself from them make me a great observer, and my observational skill helps make me pretty good at drawing; my need to "translate" everything I read or hear into my own, pictorial language pretty much guarantees good reading comprehension; my childhood spent almost completely insulated from other people and their opinions got me into the habit of thinking independently and amusing myself (I'm never bored); and my tendency to perseverate means I finish most of my thoughts. It might take me a few days, but I do tend to resolve thorny philosophical, ethical or semantic questions when they come up. I could probably come up with a much longer list of my personal Gifts of Autism, but I think you get the point.

The problem is, even if autism were to be accepted by everybody as Not a Disability, Just a Difference, we would still be at a noticeable disadvantage in the NT world, merely because we do differ from NTs is fairly basic ways, and the world is set up on the assumption that everyone is NT. When we are not being actively discriminated against in hiring (or wherever else) because it's just easier when everyone's the same, just navigating the NT world can be a logistical nightmare (how many of us can't drive?) and draining as all hell. If one of the aims of autism-rights activism is, as I believe it to be, improving the quality of life available to autistic people and allowing them access to as much of independent, public life as they want to pursue, then it would seem that activists should work toward redesigning public spaces to make them more accessible to autistics. That, of course, involves taking a leaf out of the broader disability movement's playbook.

To sum up, I think the quibbles over whether autism is or is not a disability are largely irrelevant. We experience barriers that NTs do not, because our society privileges NTs over non-NTs, so we need a movement (or constellation of movements) to overcome them and even things out.

Barack Obama Sez Mental Health Isn't Health

Feministe, Pandagon and Shakesville have already reported on this, so I will restrict my comments on it to pointing out the somewhat retrograde attitude Sen. Obama seems to have towards mental illness:

Now, I don’t think that “mental distress” qualifies as the health of the mother. I think it has to be a serious physical issue that arises in pregnancy, where there are real, significant problems to the mother carrying that child to term.

Jill at Feministe already pointed out how problematic it is for any male politician to start talking about what he thinks is a justifiable abortion, but I am struck by the fact that he waves aside all potential mental-health problems as trivial.

Depressed? Suicidal? Hallucinating? Just suck it up and deal with it, ya big whiner.

Seriously, one of the biggest things to come out of psychology in the past few decades is the extent to which mental problems are physical problems, with corresponding changes in the brain's physiology. For Obama to dismiss psychiatric symptoms as all in the mind is about as scientifically literate as saying human activities have no effect on climate.

I expect more from the Democratic Party, for Pete's sake.

The Kansas City Star Letters Page: Your Source for Misogyny, Misandry and Victim-Blaming

This past week the Star hit a twofer on the sexism front: first, they published this article by Kathleen Parker insisting that women are equally culpable for domestic violence and then, the next day, they ran this letter from a guy in Liberty, MO that's so densely packed with casual woman-hating I may have to go through it line by line.

The most important thing that I ever learned about relationships is that, given a problem, a man wants to do something about it and a woman wants to talk about it. If I had known this fact of life years ago, I probably would not be divorced.

Much violence could be avoided if women would follow the teachings of Dr. Laura Schlessinger in her book The Proper Care and Feeding of Husbands. It shows women how they can have much more control over their lives and happiness.

Men are simple creatures who don’t understand the complex female, but respond well to a beer and some affection.

The thing I find most noteworthy here is that our letter writer (when talking about domestic violence, which, while there are male victims and female perpetrators, is overwhelmingly male-on-female) sees fit only to provide advice to women. Not "Hey, men, don't hit your wives or girlfriends," but "Hey, women, try not to annoy your husbands, or they might hit you."

There are several layers of "ick" at work in that sentiment, the foremost being that male violence is accepted as a fact of life (and, by extension, men's right to hit women is unquestioned). The second is that women are made the keepers of men's emotions: men don't have enough self-control to stop themselves from hitting women when they are angry, so it's up to women to police their own behavior so as not to make men angry. The third follows somewhat from the first two: women are assigned all the blame for the violent relationships from which they suffer, because they failed in their attempt to render every aspect of their behavior inoffensive to their husbands, who of course could not be expected to control their anger.

A Brief Experiment in Communal Living

As you can probably imagine, I was a little worried about whether I'd be able to adapt to life at The Farm's Ecovillage Training Center. Classes were all day long, from 6:30 AM to 6 PM, meals were shared, and we all lived together in the Eco-Hostel, sleeping in dorm-style rooms with a bunch of bunk beds and sharing one or two bathrooms. From what I've experienced previously, in high school and college, just the human contact I had from going to classes was enough to tire me out. I could not imagine being constantly around people for ten days straight.

With this kind of background, I was accordingly skeptical of my ability to stay sane in a communal setting. It turns out I needn't have worried; oddly enough, I was probably the most at peace that I'd ever been while I was at The Farm. I never experienced sensory overload, even though we were constantly doing things, and often outside, and even though I retained my hypersensitivity to visual and auditory stimuli and my inability to tune anything out. I also did not find interacting with any of the people there to be a draining experience; normally, I have to withdraw from company periodically to regain the energy I lose just being around other people. I did not have to do that there. I also did not experience paranoia or panic attacks, both of which I've been having for about five years now whenever I enter a crowded space. Finally, I did not have depressive episodes while I was there, which may not be significant given the short duration of my stay and the cyclical nature of my depression, but I arrived deep into an unusually severe "down" phase. So either the depression suddenly lifted of its own accord and did not return (not out of the question since episodes often begin out of the blue), or whatever environmental factors negated my sensory and anxiety issues also alleviated the depression.

I don't yet know why I felt so much better overall there than I ever had anywhere else, although I have a couple hypotheses. About the sensory stuff, the rural environment may be enough to explain it. Obviously, while there's as much stuff to perceive in a rural or wild environment as there is on a busy city street or in a crowded room, the stimuli are of different types and aren't as densely packed together. You don't get a huge, oppressive wave of sights and sounds breaking over you all at once, like you do entering a crowded room; you get a steady ebb and flow. The other stuff might well have lessened just because the sensory environment was more tolerable; a lot of times I find if I am at or near overload, the slightest stressor can cause me to melt down, just because I have no energy left to deal with it. I also might have fared better with the social interactions there than elsewhere because they were unusually direct: as total strangers sharing an immersive experience, we confided in each other without any of the usual preliminaries, which tend to trip me up.

I took advantage of my unusually sociable mood to answer everyone's questions about my life with autism and autism in general; it turns out there were quite a few people there who knew someone with it. There was an older man in my class who had a nephew with Asperger syndrome, who was brilliant in physics but had underperformed at his old private school because he tested poorly (mostly due to poor fine-motor skills*; he could not get the thoughts out of his head and onto paper in time). This man was accordingly very interested in how I thought and how I perceived the world, about which I told him as much as I was able to get out. There was also a man who had taught autistic children in a special-ed class, and a woman who did not mention any specific experience with autism, but who is a retired schoolteacher and also expressed a lot of interest in how I thought and how I differed from most people. (She asked me once, "Can you lie?" to which I responded after much thought, "I probably can, but it would be really hard.")

One exercise we did as a class that I found instructive was the consensus circle. I have always been a lot more successful at one-on-one interactions than any kind of group discussion (except for class discussions, where you can raise your hand). I cannot judge conversational timing, or tell the difference between a pause and the end of someone's turn to speak, and I turn my thoughts into words so slowly that I'm usually running several jumps behind the conversation in terms of what I'm ready to express. Not surprisingly, group conversations almost always leave me behind. I expected this to happen during the consensus circle, so I proposed that we discuss that: how can people with poor communication skills gain access to full participation in a group discussion? We never got around to addressing that question explicitly, but there are several methods the consensus circle uses that help lower the barriers to participation.

They include:

• explicit, agreed-upon nonverbal signals, such as "twinkling" your agreement (spreading your hands and wiggling the fingers) or steepling your fingers if you want to speak next
• use of a "talking stick" or other formal way of recognizing who is speaking
• having officers, the Facilitator and Vibes Watcher, whose duty it is to keep the discussion on track, make sure no one person dominates, make sure everyone has a say who wants one, and monitor the emotional undercurrents of the discussion and defuse any overly intense situation

Again, the dynamic at this particular session was so laid-back and welcoming that I was able to participate in group discussions without all that rigmarole, but those are ideas I could use elsewhere, if I think I am being shut out. In particular, the rule that explicit signals be used looks like a good one, and a great equalizer for autistics, who lack the body-language-reading ability that NTs take for granted.

*There is one theory, advanced by Morton Ann Gernsbacher, that the deficits in communication observed in autism are not deficits of social attachment, attention or "theory of mind," but rather arise from "executive" problems --- i.e., trouble verbalizing or acting on thoughts. The paper I link to establishes a correlation between autistic toddlers' motor skills and later speech fluency, which would support the hypothesis she put forth in a lecture at KU, that this lack of executive control explains the communication difficulties that characterize autism.

Addendum

There were a few things to come out of my experiences at The Farm that are germane to the purposes of this blog, but before I get to that I'd like to explain a few things about how my autism affects my ability to travel.

I hate traveling. About the only means of transportation that doesn't do terrible things to me physically is walking, which I can do fine in pedestrian-friendly Lawrence, KS but which is impracticable in suburban Kansas City, where many huge, busy intersections don't even have crosswalks. I have never learned to drive, due to a combination of really awful motion sickness making it unpleasant to practice driving and my slow reflexes and inability to multitask* making me a slow learner. Eventually, my ability to tolerate the constant nausea would give out before I got good enough to take the driving test, and my learner's permit would just lapse. (This happened three times).

I had never flown before 2007, when I flew out to Washington DC for ten days to visit my boyfriend. Since then I've done it once more, to get home from The Farm, and am of the opinion that, even though flying is a lot easier on me physically than driving, the mental and emotional strain of navigating airports is about all I can handle --- if something goes wrong, I'm helpless. I am so panic-stricken just from being in the danged airport that the only thought, the only possible course of action I can entertain is to leave immediately. When going home from Washington last year, I was routed through Atlanta, where I missed my actual going-home flight due to a delay. I was already so overloaded that I could not handle standing in line for a new boarding pass; I only wanted to curl up and shiver somewhere. I was able to tell a flight attendant what was happening, and get her to go get a boarding pass for me, and have a guy escort me to my gate. But if she had been less understanding, well, I might still be in the Atlanta airport right now.

(Because of this, I believe the TSA's policy of monitoring the behavior and body language of air travelers is going to net them a whole slew of autistic --- and otherwise invisibly disabled --- "terrorists". Seriously, some of the things they look for --- signs of stress, walking too fast, not making eye contact --- are things I exhibit every time I go out in public.)

Apart from a radical redesign of airports** such that human traffic is directed along lots of smaller corridors to minimize crowding, and getting rid of the cacophany of audible announcements in favor of issuing everybody headsets or a tiny monitor that keeps them posted with information relevant to their flight, I can't think of a lot of recommendations for how to make air travel more autistic-friendly. One quick and easy fix would be more precise training for security personnel about what kind of person (besides a terrorist) is likely to show the cues they're looking for. A few quick questions when they find a potential suspect would then sort out whether the person belongs to one of those categories.

Sadly, since the airlines appear to be hemorrhaging money this year, and high fuel prices are probably here to stay, I think we can rule out any measures that would require any significant investment in improving airports.

*The motion sickness is not related to my being autistic; that, as near as I can tell, comes from my having a series of really bad ear infections in toddlerhood that messed up my inner-ear apparatus, giving me poor balance, tinnitus, high-frequency hearing loss, and the motion sickness and dizziness. The processing difficulties (slower reaction times, lack of multitasking), however, do come from autism.

**The Kansas City airport actually has a decent layout for crowd-minimizing. They have three separate terminals, with security checkpoints at each one, so you only have to deal with a third as many people as would be in an airport of its size. It's not perfect --- that's still more people than I feel comfortable around, and it's still pretty loud --- but it's a step in the right direction.