Tuesday, May 22, 2012

Conserving Endangered Species

When I was younger, I took it for granted that a species going extinct was a terrible thing, and we should do whatever we could to prevent it. I was a fairly staunch environmentalist then, and felt frustrated at how little I could actually do to help the environment. As I got older, this sense of futility led me to avoid thinking about the issue.

Just recently, though, I've gotten back into nature documentaries. And it's gotten me thinking about endangered species again, and I've realized that my old arguments for conservation don't actually fit with my values.

I realized this when watching a documentary simulating the history of life on earth, showing what creatures existed in different eras. Long before we evolved, species were going extinct. In fact, there have been many mass extinctions, wiping out entire families of species - and each time, something new has evolved to take its' place, often something interesting which has not been seen before. One of the most well-known mass extinctions paved the way for mammals like us to dominate the world. Some of the most fascinating and unique creatures in earth's history have died out, and some never would have existed if it weren't for other species dying out. Extinction, though sad, has an important role in the cycle of nature.

So what makes the current rush of extinctions any different? The fact that we caused it? Well, much as we like to delude ourselves into thinking we're special, we really are just another species on this world, and one species driving another into extinction is nothing new. Neither is a species changing the climate and causing mass extinctions - when photosynthesis first evolved, the resulting rise in oxygen levels wiped out many anaerobic single-celled organisms. We're not the only ones to make the atmosphere toxic. And without photosynthesis, none of us oxygen-breathers would exist.

What about the fact that this extinction is going at a faster rate than the others? Well, that is a problem, but even so, nature can handle it. There are species that are benefitting from our actions, too. If the ecology of the earth collapses, there will be enough survivors to rebuild it. I seriously doubt we'll manage to actually destroy all life on earth - and if anything is left behind, then in a few milennia we'll have lush and diverse ecosystems once again.

Objectively, I don't actually see a problem with human-caused extinction. Does this mean I think conservation efforts are pointless? No, far from it!

Firstly, we're part of our ecosystem too. We delude ourselves into thinking we're apart from nature, but we actually depend on the earth's resources for everything, and will continue to do so until we can establish self-sufficient space stations or planetary colonies. Which is a lot further off than the looming environmental crisis. Humans have already started to pay the price of some of our environmental gaffes - birth defects from Agent Orange, losing livelihoods when the Cod fishery collapsed and increasing rates of melanoma are only a few examples. We stand to suffer a great deal more if we don't change our course. One theme of many mass extinctions is that when the entire ecosystem reshuffles, it's often the ones on top that die out. We could lose everything.

Secondly, everything is connected. You can't just take species in isolation - extinction of one species could have a cascade of effects throughout the whole ecosystem. And we don't understand ecology well enough to fully predict the consequences of messing around with it. Sure, it's robust enough to bounce back eventually, but in the meantime, what kind of problems will result?

Thirdly, scientists need time to study these creatures. It's a lot easier to study a living species than an extinct one - it took a long time to figure out that Smilodon (a kind of saber-toothed cat) were probably social creatures, something you can figure out about lions pretty much instantly. Science is kind of an end in itself, because it's impossible to predict, when we start studying something, what potential implications it might have. Recently people have realized that hyenas could actually tell us something about how we evolved, because spotted hyenas (who live in clans of up to 90 other hyenas) have separately evolved many of the same social-cognitive features as primates. Who knows what else we have yet to discover about other species? (And we'll need to know a lot of this stuff if we ever meet sentient aliens, because they will not think like humans.)

And lastly, I happen to like a lot of endangered animals. It can be fun to learn about them, to watch them live and grow and raise families. That, in itself, is a reason to conserve what we can.

Saturday, May 12, 2012

Aloof Affection

I visited a friend of mine recently. She has a chocolate lab, and during the course of our visit we got to talking about the differences between cats and dogs (I've had cats all my life and I used to have a dog as well).

I pointed out one difference - very often with my cat, I'll be doing something sedentary like reading, and she'll come up and sit a foot or two away from me. She'll make no overt attempts to attract my attention, but I can reach over every so often and stroke her, and she'll enjoy this without asking for more.

A dog would never do that - sure, they may decide to lie down near you, but if you show them the slightest bit of attention they'll perk up and start trying to interact with you. It's flattering, but I personally find it a bit overwhelming, and I have a habit of avoiding initiating interaction with dogs unless I'm sure I can handle excited friendly dog overtures.

The thing is, when my cat sits near me and lets me pet her, this is affection. There's a stereotype that cats aren't affectionate, but they really are. They just have a quieter, more low-key style of affection than dogs do. (That is, when they don't just leap on top of you, which cats will often do as well, though dogs tend to jump at people more readily than cats.) You can see this clearly in the patterns of who the cat will and will not come near to. If a cat doesn't like you, they'll always be out of reach. Very often they'll be out of sight, too. Cats pay careful attention to a human's reach, and far out of reach, barely out of reach and in reach mean different things. (Sleeping barely out of reach seems to mean they like you but don't feel like getting petted, or if they're being active it means they want to lead you somewhere.) I see similar behavior in the nature show Big Cat Diaries, with leopards (who act a lot like huge housecats) choosing to sleep about a foot away from their half-grown cubs.

And it's not just cats and dogs that show this contrast. I've noticed a similar difference between autistic and non-autistic children. I often hang out in the same room as my parents, not necessarily interacting, but just being near them. In working with children, I've found often I can sit near an autistic kid and engage in occasional brief interaction while mostly just enjoying their company. I've even had autistic kids do the same back to me, shooting me brief glances or occasionally initiating a very brief interaction. (For example, with one kid I started playfully stepping on his feet in the pool. Every so often, when we weren't actively interacting, he'd step on my foot and give me a brief playful glance.) Non-autistic kids, whether they're neurotypical or have some other developmental disability, rarely let me get away with brief interactions - if I show them any attention, they want me to give them undivided attention, just like a dog does.

Which makes me think that people think autistics aren't affectionate for the same reason they think cats aren't - because both cats and autistics have a low-interaction style of affection that is marked by seeking out proximity with rare or no initiation of interaction, and a preference for brief interaction when you get it. I also wonder if the already low rate of initiation in autistic kids is, in some cases, even lower because they know that, like me with dogs and non-autistic kids, if they show the slightest bit of attention to the person they'll get more attention back than they really want.

If you have an autistic loved one and you think they don't care about you, pay attention to where they chose to be. Do they chose to be near you more often than could be explained by sheer chance? (They may not follow you from room to room, because autistics often have trouble shifting attention, but if they do follow you, even delayed, this is a clear sign.) Also try, when they initiate interaction, responding with a brief, low-intensity response and waiting for them to signal if they want more. And if they're not in the mood to interact, try just setting yourself up to be near them, while pretending not to notice them.

And remember that a different style of affection isn't necessarily better or worse. It's just that it can result in a communication barrier if it's not well understood. (There's a pop psychology theory floating around that there are 5 different love languages, and each person prefers to communicate and receive love in one particular language, causing problems if these don't match. While I'm not sure if there are specifically five love languages or if I like the five he's picked, I do know that the basic idea is right, and could be very useful to interaction between autistics and non-autistics.)

Sunday, May 06, 2012

Where Do They Fit?

I think Carly's Voice, of all the stories I've read of autistic people finding communication when others thought it was impossible, has gone into the most detail about the challenges faced by nonverbal autistics after they begin using assistive communication.

There really is no place, in the services provided for disabled people, for a person who has severe developmental disabilities and is highly intelligent and able to communicate. As far as many service providers are concerned, these people don't exist.

In some ways, these people face similar issues to people with severe physical disabilities (such as quadriplegic cerebral palsy) and no other disabilities. Both groups are of average intelligence and can communicate their wishes, but need significant assistance with activities of daily living. And both groups are likely to be assistive communication users.

But autistic assistive communication users don't fit the mould for physically disabled people either. Firstly, though their cognitive abilities may be better than previously thought, they still have cognitive differences, often very pronounced cognitive differences (eg Carly appears to be a visuospatial thinker). These differences may somewhat account for their severe difficulties (though motor apraxia seems to be the biggest issue) and certainly impact on how to present information so they can readily understand it. In some ways, they'd be more like a physically disabled person who also has severe dyslexia or another specific learning disability.

Another issue is behavior. Physically disabled people are probably not significantly more likely to have 'behavior problems' than nondisabled people. When they do have behavior problems, their physical disabilities may make these issues less problematic - a physically aggressive person with very poor arm strength and no leg use is less able to actually cause any harm than an aggressive person with no physical disabilities. In contrast, many nonverbal autistics who use assistive communication have the same kind of behavior issues that are commonly associated with autism, such as self-injury, aggression, screaming or running out in front of cars. These behaviors don't deserve nearly the stigma they carry, but they are still issues that can complicate services for these people.

And not only may their behavior pose a problem, but their sensitivities as well. Most nonverbal autistic people seem to have marked sensory processing issues - to a greater degree than high functioning autistics like myself. I noticed this with the one boy I worked with who seemed like me but more severely autistic. The same things that caused me mild discomfort would make him completely fall apart. I've heard some people with severe sensory issues describe feelings of overload that are as foreign to me as I suspect my overload is to neurotypicals. (I do think that anyone, if pushed far enough, can experience any degree of overload. For example, some of the coping strategies used to deal with overload are also used by severely traumatized people. But most people have never been pushed as far as some everyday events can push a person with sensory issues.) Sensory issues are one of the few disabilities that can genuinely make someone unable to be integrated into a mainstream class - if the person is in perpetual overload whenever there are more than 5 other people in the room, for example, they won't be able to handle a classroom of 30 kids.

(I just thought of a good analogy for the differences between my sensory overload and the overload felt by some nonverbal autistics - it's like the difference between asthma attacks that cause mild chest pain and difficulty catching your breath and asthma attacks that put you in the emergency room.)

Another issue is inconsistency. Partly this is due to sensory overload, partly due to motor apraxia, and partly it seems to just be a natural learning style, but many nonverbal autistics are very inconsistent in their abilities. They may be able to do one thing but not a seemingly-identical activity, or do something one time but not another time. Even their assistive communication use may be inconsistant, meaning that even though you know they can type, they may not be able to type right now. Carly, for example, in her early years of typing, would unexpectedly stop typing for a couple weeks at a time, and then start again. She later explained that she was simply taking a break because typing was difficult for her, but at the time her father found it quite confusing.

There needs to be research done into the needs of people with severe developmental disabilities such as autism and high level assistive communication abilities. How do you best educate someone who is at a normal grade level academically but types to communicate and unexpectedly starts screaming and self-injuring? How do you manage times when they are temporarily unable to communicate, either due to skill inconsistency or because their communication device is broken or not present? (For example, if the device isn't waterproof and they're going swimming, or if the device got lost or stolen.) What kinds of learning styles do these people often have, and how do you teach to the way they learn best? How do you create an environment that is safe for a person who finds ordinary sensory stimulation excruciatingly painful?

Furthermore, it's likely these individuals are the tip of the iceberg. How many more individuals have just as much potential, but haven't found a communication system that works for them? More research needs to be done on ways to help these people find their voices. But when they do, will we be ready for them? Imagine if it turned out that 50% of people with severe developmental disabilities could communicate at a high level with the right support. How would this revolutionize the service provisions? (One specific way, sadly, is in casting light on crimes done to disabled people who are assumed to be unable to ever report on them. Many assistive communication users have alleged abuse at the hands of care providers. These people may end up doing a huge favour for those who never can communicate enough to report abuse.)

Friday, May 04, 2012

To Carly Fleischmann (And Others Like Her)

A bit of an intro: I'm halfway through reading Carly's Voice, and I'm torn between liking Carly's wit and assertiveness and feeling sad at some of the things she says, about wanting to be normal. Although this is addressed to Carly, it's really for anyone who longs to be normal and is far from being so.

I am autistic too, Carly, though my autism is much less severe than yours, to the point where many people argue about whether people like me really have the same condition as people like you. Though I do think the entire spectrum shares some commonalities, in society's eyes you and I are clearly completely different, and I recognize that.

But there is one thing all disabled people share in common - we're seen as broken, as less than full people. There is a cult of normality in our society. People claim to be accepting of diversity, but really, our society much prefers to make it invisible. If you're different, they try to make you fit and pretend your differences don't exist, and if they can't do that, they try to hide you away and forget you're even there. Things are getting better, but it's a slow process, and too often people ping-pong from the one option to the other one, instead of giving us what we really need.

I know a boy who I suspect is like you, Carly. He hasn't found a way to communicate, but I suspect he knows far more than he can say. I worked with him for a couple of years, volunteering with a physical activity program. I couldn't find the way for him to communicate, but I spoke to him as an equal, telling him things in case he understood them. And I found a way to talk to him with my body, flapping my hands with him and sharing the little sensory things he focused on, like the way the light plays on the surface of the water and creates flickering shadows on everything underneath. Some of how he communicates was more familiar to me than any of the neurotypical people I've met - it's like he spoke a language I was meant to speak, but have spent my whole life suppressing. The things I've longed to do, he was unable to stop himself from doing them. Though he and I have lost touch, I'll always remember him.

I often wonder how he feels inside. I'd love to hear him tell me. But if he said he wanted to be normal, like you do, how would I feel then? Extremely sad. There's something wonderful and special about the way he is. Even if society can't see it, I certainly can. A world without people like him would be missing something important. Not something that can be measured by the usual measurements, like careers and families and inventions and artistic productions (though I'd love for him to achieve those things, if he wants them) but by something intangible.

I hope that someday, Carly, you will see what makes you different is not entirely made up of bad things, that there are good things in the bundle too, and that all of it makes you Carly, and you're a special, wonderful person just the way you are.

Thursday, May 03, 2012

Old Journal Articles

Most scientists read only recent research - within the past 10 years. Anything older is considered out of date, and of limited scientific usefulness.

I'm an exception. In both psychology and genetics, I have sought out journal articles from every era I could find them. I have an interest in medical history, and in getting a picture of the lives of disabled people in times past.

In the case of genetics, it's true that older articles are of limited scientific usefulness. When they describe a child with 'extra material on one of the D-group chromosomes', it's impossible to tell which chromosomes are actually involved. As a result, you can't compare that child's phenotype with others affected by similar chromosome abnormalities. (Whole-chromosome aneuploidies, the easiest chromosome abnormality to detect, have been reliably described back into the 1960s, however.)

But psychology is a totally different matter. Although we have some new neuroscience measurement techniques, most of psychological research uses similar forms of measurement to what people have used since the beginning of the field of psychology - the technologically simple method of observing behavior and eliciting responses to stimuli. Pretty much the only challenge is that our diagnostic categories have shifted, but if you get used to thinking that 1960s psychotic children are today's autistic children, it's not that big a deal.

And there are some real gems among older studies. In the 1970s, I've found two studies into Machiavellianism in children - one specifically testing interpersonal manipulation ability, another looking at parent-child interactions in the development of Machiavellian beliefs and manipulative behavior. Both studies are quite valuable and informative, and raise several follow-up questions that could be researched further.

Furthermore, there is some data we can only get from older journal articles, such as the gender differences in styles of manipulation used by children in the 1970s. Given shifting gender roles, the results will be different if those studies are repeated now. Culture differs across time periods as well as between different regions, and historical cultural changes are much harder to study. Pretty much the only way to study this is to repeat old studies and see if we find new results in a different cohort.

But we need to remember that just because those articles aren't written with the theoretical knowledge of our time period does not make them useless.