The Unglamorous Details

Some people seem to have the idea that autistic civil rights advocacy is all glitz and no substance—that it's mainly about looking good to impress the public, such as by creating popular blogs, being interviewed in newspapers and magazines, appearing on Good Morning America, and so forth. The detractors ask: How is the neurodiversity movement helping those autistic people who are struggling with serious difficulties in their daily lives and who are not writing blogs or making media appearances?

In fact, like other civil rights efforts throughout history, most of the work is being done in the trenches, quietly and with no fanfare. When an autistic employee makes the difficult decision to be "out" in the workplace and to talk about his or her differences with co-workers and managers, this is autistic civil rights advocacy, and it is helping to make our workplaces more understanding and accommodating for people with neurological differences. When a parent actively seeks to improve a school district's policies to ensure that autistic children are included in school activities and that their teachers receive the proper training to understand their needs, this also is autistic civil rights advocacy.

The Central Pennsylvania chapter of the Autistic Self Advocacy Network, led by ASAN's vice president Scott Robertson, announced yesterday that its advocacy efforts helped to obtain the federal government's approval of a Medicaid waiver for autistic adults in Pennsylvania. This waiver, which is the first such waiver in the United States that is specific to autistic adults, will benefit autistic adults in Pennsylvania who have self-care difficulties and who are not currently receiving services. Funds will be provided to enable access to needed supports and services for housing, employment, other activities of daily living, and integration in the community.

You probably won't see anything about this Medicaid waiver on the mainstream news sites, and the recipients are not likely to be writing popular blogs or making media appearances. It's not much of a story—unless you happen to be one of the recipients, that is. Because of the advocacy efforts of the autistic civil rights movement, they will now be able to stay in their own homes and hold productive jobs in the community, rather than being warehoused in institutions or group homes. This is how the neurodiversity movement is helping to improve the lives of real people in our community—through sustained and committed efforts, most of which are made with no cameras around anywhere.

Gay Marriage and Other Social Changes

When gay marriage became legal in Massachusetts four years ago, it was all over the media for months. The talk shows and conservative blogs buzzed with outrage, and Republican campaign strategists even went as far as to put anti-gay marriage initiatives on the ballot in several states, with the goal of increasing conservative turnout to help George Bush win re-election.

Last week the California Supreme Court declared a state law against gay marriage to be unconstitutional. If you didn't happen to notice anything about this court decision in the news, you wouldn't be the only one. It was only in the headlines for a couple of days. Political pundits wrote a few articles to the effect that gay marriage wasn't likely to be an issue in this year's election because opinion polling suggested that as many voters would turn out to support it as to oppose it. Hollywood gossip columnists mentioned a few gay celebrity couples who were celebrating the decision and planning their weddings.

This goes to show how quickly mainstream society can adjust to a new state of affairs. Within four years, gay marriage went from being widely seen as threatening America's traditional way of life to being such an ordinary event that it hardly merited any news coverage. And who would have thought, before the presidential campaign season started, that a female candidate would lose the Democratic nomination because (among other things) she ended up being seen as the establishment candidate and yesterday's news?

Four years ago, the idea that our society ought to respect neurological diversity also was seen as an outrageously radical challenge to the status quo, to the extent anyone had heard of it at all. The number of pro-neurodiversity websites literally could have been counted on one's fingers. Autistic people were almost never interviewed by journalists, invited to speak at autism-related events, or considered worthy of holding positions of authority in autism-related organizations.

Now, although most media organizations have a long way to go in shedding their biases, they regularly interview people who support neurodiversity, and they're coming to see it as a mainstream viewpoint. Thousands of websites have been created over the past few years by supporters of autistic civil rights. Organizations are starting to understand that equal opportunity for autistics is a diversity issue. Governments are starting to understand that it is a human rights issue.

We're still at a very early stage in this process, and there is still a huge amount of ignorance out there; but I am hopeful that in another four years, social acceptance of the autistic minority population will have become just another unremarkable aspect of everyday life.

Preserving Treasures

In a vault dug into a mountainside on an Arctic island far north of mainland Norway, a collection of the world's seeds has been carefully preserved to ensure biodiversity in future years. The vault, maintained by the Global Crop Diversity Trust, is designed to protect the seeds from natural catastrophes.

The greatest threat to the world's crops, however, is not a major volcanic eruption or an asteroid strike; rather, it is the routine practices of commercial agriculture. Today, most crops are grown from a tiny number of patented seed varieties, which have been designed not only for maximum yield, but also for such features as resistance to common herbicides and a long supermarket shelf life. As a result, large quantities of food can be produced much more efficiently than in the past, but many crop varieties and animal breeds that are not as well suited to mass production have become extinct or are on the verge of extinction.

The sustainable farming movement seeks to preserve biodiversity by planting heirloom seeds and raising heritage livestock breeds on small farms. Sustainable farmers point out that these seeds and animals are particularly well adapted to local environmental conditions and that some of their genetic traits may turn out to be valuable on a larger scale as the planet adapts to climate change. In addition, history has shown that a lack of biodiversity in agriculture is dangerous; if a widely planted crop variety is ruined by blight or pests, or if a livestock disease spreads quickly through genetically identical animals, people can end up starving in large numbers. The Irish potato famine in the 1840s happened because the potatoes in Ireland were all of the same variety and were all destroyed by the same blight.

There are many individuals and organizations working to protect endangered seed varieties and livestock breeds from extinction. They understand that biodiversity has a value in itself, even if a particular seed variety may not result in the highest yield or produce crops of a consistent shape or color.

Many of the same considerations hold true when it comes to preserving the diversity of the human genome. For our species to have the best chance to survive and flourish, we must be able to adapt in many ways to the unforeseen changes that await us. Moreover, the modern economy is becoming increasingly specialized, and employers need to find workers with different cognitive traits and social behaviors to fill the many different niches in their companies. A workforce made up of near-identical employees with a narrow set of abilities would be grossly inefficient.

Imagine a society where many educators and medical professionals adhered to the same philosophy as the sustainable farmers. Parents might be told that their young autistic child was like a rare flower or bird, ideally suited to certain kinds of environments. Genetic diversity in the human species would be treasured.

Maybe we'll get there someday. Until then, for a discussion of the sort of attitude we have to contend with at present, I recommend Bev's recent article about being removed from the general catalog of humanity.

Being Aware of Differences

Click on the button at the left to visit Momologue's page asking parents, autistic adults, and other interested folks to blog about autism awareness in April to improve our collective understanding of how people experience the world in different ways.



To describe my extended family briefly, we could easily be the poster family for Wigler's hypothesis that autism genes are dominant in males but not in females. Every male in both my mother's family and my father's family has been autistic for at least three generations. (Although it probably goes back much farther than that, I don't know enough about the previous generations to describe them.) I am the only autistic woman.

Some of the female members of my family seem to have their own genetically determined syndrome, to use the term in a neutral sense to denote a collection of related traits. They are chatty, dislike spending time alone, get bored very easily, and have a tendency to become obsessed with popular social activities such as shopping and women's sports.

Although it can be a challenge to raise children who have such significant behavioral differences, my family always has recognized the importance of setting reasonable expectations and not allowing anyone to use their neurological condition as an excuse for irresponsibility. Homework always meant hanging up the phone and doing all the assignments, no matter how much a girl might whine that she couldn't possibly focus on her schoolbooks for that long and would surely die of boredom if she had to wait until tomorrow to talk with her friends.

A realistic understanding of neurological variation has to include an acknowledgment that not everything can always be positive and that, on occasion, people do suffer unpleasant feelings of social isolation and anxiety as a result of their neurology. For instance, while the autistic family members are all enjoying a multiplayer empire-building game using every computer in the house, a young female of a different temperament may become extremely distraught because she cannot check her classmates' Facebook and MySpace pages for updates on next weekend's party. She is likely to become convinced, in her own mind, that she is totally doomed to a life of permanent social exclusion if she can't get her brother off the computer this instant. Other family members need to be aware of her cognitive differences and to realize that such fears, however irrational they may appear to others, seem very real to her at the time.

Families also need to recognize that troubling feelings of inadequacy and self-doubt can result from a young person's inability to do the same things that others can do, and that occasional tantrums and other expressions of frustration may occur. When a teenager sees her autistic brother getting high marks in honors classes and winning prizes in science competitions, while she struggles with the basic high school curriculum, she may need reassurance that she is just as smart and capable in her own way. Parents should keep in mind that her difficulties with time management, organization, and executive functioning are not necessarily permanent and that, as she matures, she may no longer feel a strong compulsion to spend most of her time hanging out with her friends at the mall when she ought to be studying.

Indeed, although it can sometimes be difficult to understand and appreciate the extent of others' cognitive differences, we should not lose sight of the fact that we all have significant potential for worthwhile accomplishments of one sort or another. There can be a productive niche for everyone in our complex and diverse world. Let us all reflect on what we can do to bring about this vision of a more enlightened and accepting future as we celebrate (what ought to be) World Neurodiversity Day.

The Bubble

Joseph left the following comment on my last blog entry. I started to answer it but then decided that my answer was getting too long for a comment and that the question would be better addressed in a separate post:


Check out this 1966 Time Magazine article on homosexuality. Historical comparisons are tricky, but are we roughly at that stage?


While this may seem counterintuitive given the extent of today's mass hysteria about autism (as far as I know, Congress never passed a Combating Homosexuality Act), I'm inclined to think that the autistic community is significantly closer to achieving equal rights than the gay community was in the 1960s. In both cases, widespread prejudice and discrimination resulted from psychiatric labeling of those belonging to the group as mentally disordered sufferers. Unlike autistics, however, gays also had to deal with (and are still dealing with) the huge historical burden of having been condemned for millennia in the Judeo-Christian tradition as abominable evildoers. As the 1966 article accurately states, "the view that homosexuality should be treated not as a vice but as a disease was considered progressive." There is no comparable religious antipathy toward the autistic population; although we occasionally see stories about clergy who describe autistic children as soulless or who attempt to exorcise demons from them, such ignorant foolishness is not based in religious tradition.

Indeed, most people had never even heard of autism until very recently, when the diagnostic criteria were substantially broadened and the number of people identified as autistic increased accordingly. Although it may seem as if we're living in a deeply prejudiced society that hates autistics, I think that what we've seen over the past few years has been an artificially created media bubble that can be attributed in large part to Bob Wright's abuse of his former position at NBC to spread his bigoted views, as well as the marketing efforts of quack-cure opportunists who have profited from fear and stereotypes. And like fads in general, this bubble can—and will—deflate very quickly when the public has had enough of it.

What does this mean in practical terms? It means that we want to position ourselves to pick up whatever is left over when the autism awareness craze goes the way of disco and pet rocks. More specifically, we need to get control over funds allocated for awareness purposes and use that money to debunk stereotypes and to promote understanding and acceptance. We need to make sure that useful research in education, communication, and other worthwhile areas will continue. We need to take effective action to put an end to employment discrimination.

And here's what the end of autism awareness is not going to mean. If we can get autism taken out of the DSM, in much the same way that the gay activists succeeded in getting homosexuality removed, that doesn't mean we can all go back to enjoying the perks of being part of normal society. Some of us never were included in that privileged caste, for various reasons; and even those of us who once were seen as normal have a moral obligation, I believe, to stand in solidarity with those who have endured a lifetime of oppression. As the concept of neurodiversity becomes more widely accepted, we can and must take advantage of this opportunity to transform our society by ending—once and for all—the unconscionable division of the human species into the normal and the defective.

A Change in the Air

It's almost spring, the crocuses are popping up all over (mine, which are in a north-facing spot, aren't quite in bloom yet), and the bitter cold air of winter finally seems to be gone.

Another very welcome change that I've noticed recently has been in the mainstream media's discussion of autism and neurodiversity. When journalists first noticed the neurodiversity movement a few years ago, they wrote a few articles presenting us and our views as a curiosity. Even when their tone was sympathetic, it was clear that they believed themselves to be dealing with a tiny fringe group of Internet activists, rather than witnessing a significant cultural change.

Now, even though they and most of their stories still are chock-full of ignorant stereotypes, mainstream journalists seem to be figuring out that the neurodiversity viewpoint is a lot more commonplace than they originally realized. Instead of just writing an occasional story explaining the concept of neurodiversity, as they once did, it looks like some of them are getting the message that curing autism is a controversial idea and that any story along those lines had better discuss the neurodiversity view as a matter of fairness and balance.

Take a look at this Newsweek article. The author obviously started out to write about the lack of scientific knowledge about autism and the widespread fear and ignorance among the public, but the story ends up discussing the Autistic Self-Advocacy Network and the belief that autism should be accepted as an intrinsic part of an individual. Although the author doesn't advocate the neurodiversity point of view herself, she apparently decided to mention the issue because she recognized that she couldn't present a complete discussion of autism in today's society without it.

I think we've just about reached the tipping point—that is, the point where we are seen as part of the mainstream, rather than a largely unknown group of outsiders. We've gotten here as a result of the hard work of many people in our community over the past several years, including Ari Ne'eman and Kristina Chew (who were interviewed in the article) and many bloggers and others who might not have had any direct contact with professional journalists but nevertheless have contributed—in a very meaningful way—to the change in social attitudes that we are beginning to see. Your efforts have made, and are continuing to make, a tremendous difference. Give yourselves a hearty Bravo! and then open the window and take a deep breath of that springtime air.

Unfashionable Abilities

Every now and again, someone misrepresents the neurodiversity movement by claiming that its adherents believe autism is not a disability, but a wonderful gift and the next stage in human evolution. Without fail, several pro-neurodiversity bloggers respond that they don't believe any such thing—that yes, autism is a disability, but that it is OK to be disabled, and that neurodiversity is all about making the world a more accepting place for the cognitively disabled.

Speaking only for myself here, neither of the above viewpoints accurately represents the way I see neurodiversity. The question of whether or not autism is a disability is a false dichotomy, as I see it, and the wrong question to ask.

There are two main schools of thought with respect to disability: the medical model, which characterizes disability as consisting of medically defined impairments; and the social model, which looks upon disability as a culturally constructed status resulting from society's failure to provide adequate services and accommodations to enable full participation in society by those who have physical and/or cognitive differences.

Most of the arguments about autism as a disability seem to be rooted in the confusion caused by these conflicting approaches. Behaviorist and biomed supporters chiefly see autism in terms of the medical model, that is, as a defect to be remediated by means of various therapies. When someone disputes the validity of their medical claims, they're likely to interpret that as the equivalent of denying that autism is a disability or that autistic people have medical problems. Neurodiversity supporters, on the other hand, generally embrace the social model of disability and argue that social acceptance of cognitive differences is the most important issue. According to this view, treatment of medical problems, while appropriate to the extent it is based on solid and unbiased scientific research, should never be a substitute for respecting and protecting human rights.

As a consequence of the different ways in which the term "disability" is being understood in the autism community, the discourse often degenerates into straw-man claims that have little to do with reality. This is what I have to say about that: It's time for everyone in the various camps to recognize that these issues are very complex and that unrealistic caricatures of opposing views are not going to help autistic people or their families. I haven't seen any neurodiversity supporters who would deny that some autistic people have medical problems; disputing issues of causation and treatment is another matter altogether and has more to do with scientific accuracy than with political activism. I also don't believe that the majority of behaviorist and/or biomed supporters are ogres who consider the civil rights of autistics to be totally irrelevant.

Regarding the straw-man depiction of neurodiversity as some sort of aspie supremacy cult, I'll note that a few people have indeed argued that autism is the next stage in human evolution; however, my impression is that they're mainly teenagers who complain on forums that they don't get enough respect for their academic talents. As they grow up and develop a more mature perspective, they'll eventually realize that high scores on tests do not equate to overall intellectual superiority and should never be used to pass judgment on anyone's value as a human being. (And maybe they'll learn how evolution actually works, too.)

Although I generally agree with the views expressed by the pro-neurodiversity bloggers, I don't believe that it is appropriate under the social model of disability to make categorical statements such as "autism is a disability." Yes, it's certainly true that some aspects of autism are disabilities under some circumstances; but the same could potentially be said of any other set of human characteristics. To put it another way, today's disability classifications often are based on irrational prejudices and subjective value judgments; they're not just about a lack or impairment of an ability.

When pro-neurodiversity bloggers write that autism is a disability, I think what's meant is that in today's society, autistic people can benefit significantly from services and accommodations that are not commonly available. I don't disagree with that observation, and I believe that accommodations for all sorts of differences should be made available as a matter of course; but, at the same time, I think we need to be very cautious about declaring millions of people to be disabled on the basis of recently created and vaguely defined diagnostic classifications. On that point, here's an excerpt from the anti-psychiatry essay Shrinking to Excess:


The latest edition of DSM lists more than 300 mental syndromes. Only two decades ago, an earlier edition listed a mere 106... the psychiatric establishment is foisting these invented illnesses on us in a bid to lay claim to handsome reimbursements from insurance companies. For psychiatrists to receive payment from health insurance companies, they must find a way to label a patient with a recognized condition--which is why they recognize more, and more, and more conditions. Wait for the next DSM, and there will be at least another 50 conditions added to the existing list. According to Drs. Kutchins and Kirk, "the unlabeled masses are a vast untapped market, the virgin Alaska oilfields of mental disorder."


When we fail to challenge the authority of medical professionals to classify and pathologize traits that once were accepted as natural human differences, we make ourselves complicit in perpetuating a modern-day caste system that ranks people according to their perceived normality. The central underpinning of this oppressive system is the arbitrary division of the human race into "disabled" people and "normal" people, which depends largely on what sort of abilities happen to be fashionable at the moment. Instead of playing along with this destructive charade and obediently agreeing that we are disabled because they say so, we ought to be standing up and screaming at the top of our lungs that the Emperor of Normality is butt-nekkid.

What's Your Spin?

One of my co-workers sent me a link to an interesting online test that's supposed to measure whether a person is mainly left-brained or right-brained:


http://www.news.com.au/heraldsun/story/0,21985,22556281-661,00.html


Different people actually see the figure spinning in different directions. You may also want to try looking at it from more than one angle. I see it spinning clockwise, except when I look at it from the corner of my left eye—then it goes back and forth.

If I hadn't known it was a test, though, it probably never would have occurred to me that other people would see it differently. That left me thinking about the many ways in which our perceptions differ. Not only can we see things moving in different directions based on whether the right brain or left brain is dominant, we also see colors differently, depending on how many rods and cones we have in our eyes. What looks like a bright and vibrant color to one person may seem pale and washed-out to another, and a small minority cannot see some colors at all. The light in a building may seem too bright to some and too dim to another, while some find that the fluorescent bulbs have an uncomfortable flicker that others cannot see.

It's the same with sound. A volume that seems normal to some of us may be unpleasantly loud to others, while another person can barely hear it. We enjoy different kinds of music. Some of us find repetitive sounds such as falling rain or chirping birds to be relaxing, while others find that such things get on their nerves. Some of us can hear the humming of electronic devices, while others can't. Loud, sudden noises startle some people, but others aren't bothered at all. Some folks don't mind living next to a highway, while others would be very annoyed by the noise.

We also perceive smells differently. One person's favorite perfume makes another person wonder what's rotting in the garbage can. Some of us enjoy walking through a fragrant flower garden, while others prefer the smells of a woodworking shop or a library. Although some folks love to linger in the bath and beauty stores at the mall, sniffing all those perfumed products, others will take a long detour to avoid walking past them.

There's a vast amount of individual variation when it comes to taste, as the gigantic supermarkets of today's society clearly show. Some people are very picky and will eat only a small number of foods, while others prefer a large variety, and there are a few folks who will eat just about anything you put in front of them. There are people who pour salt and ketchup on everything, while others dislike condiments and salty foods. Some folks like fried and processed foods, but others go for the veggies and other natural stuff.

As for touch and texture, some people don't mind being touched unexpectedly, while others find it very unsettling. A temperature that is pleasant for one person may be too hot or cold for another. Some prefer to wear natural fabrics, while others are more comfortable in synthetics. Touching a rough surface such as a popsicle stick seems creepy to some of us, but many folks don't mind. Some people hate getting wet, while others love it.

When you think about how many individual differences there are—literally thousands of differences—in how we perceive the world around us, it becomes clear that each person has a unique profile of sensory experience that varies significantly from that of everyone else. Two people standing next to each other are never going to experience the same thing.

So—considering the extent to which our individual wiring gives us very different perspectives on our world—isn't it about time to do away with the prejudiced fiction that there is such a thing as a "normal" brain?

The Meaning of the Word

I recently read an excellent blog entry about a school that preaches the virtues of diversity to its students, while not being at all amenable to making accommodations for a small boy's sensory integration issues. The conclusion: They have no idea what the word "diversity" means.

Unfortunately, very few of the people who have advocated for equality and diversity, at any time in history, have understood it broadly enough to encompass the entire human species. When the wealthy slaveowner Thomas Jefferson wrote that it was self-evident that all men were created equal, he was referring to white males who owned property. Back in those days, it was dangerous radicalism just to suggest that kings were not divinely appointed to rule over the commoners.

When the early feminists sought the vote, how did they persuade men to support their cause? If you thought they just gave eloquent speeches about the value of diversity in a flourishing democracy, you'd be wrong. Rather, some of them deliberately appealed to racial prejudice, arguing that white women's votes would help to ensure Aryan supremacy.

When the schools began to accept children of all races, students were taught that they should appreciate the diversity of different cultures. Then they took the bus home to segregated neighborhoods and eagerly watched TV shows about cowboys shooting "savage" Indians.

At present in the United States, one of the two major political parties often campaigns on a strategy of getting votes from bigots by stirring up prejudice against blacks, gays, Hispanics, Muslims, and anyone else they think won't vote in large enough numbers to make a difference. (Yes, I know there are decent and moral Republicans out there, and I respect you guys, but y'all seriously need to clean up your party and throw out the racists and the gay-bashers.)

The trouble with the word "diversity" is that there is no clearly defined consensus view of what it should mean. Many folks think of diversity as including all people who are just a little bit different from themselves; but as for those they see as significantly different, well, it doesn't even occur to them that the word might apply in that context.

No matter how much our society broadens its view of diversity, there's always farther to go. In the future, even if we reach a point where the humanity of every person is respected, there will still be more questions to address. For example: As we learn to communicate more effectively with animals, should we treat them as entitled to self-determination? If technology advances far enough to allow us to build self-aware androids, what civil rights will they have? Will we need anti-discrimination laws to protect cyborgs? If we encounter sentient aliens, how should we interact with them? Some day, we may have to deal with these issues in real life, rather than just entertaining ourselves with them in science fiction.

Bigotry rarely is as self-evident as one might expect.

Full Disclosure

I received an e-mail from an autistic man who commented that if he were planning to get married, he would disclose his autism and the fact that it is highly heritable, so that his wife-to-be could make an informed decision about whether she could cope with raising an autistic child.

Generally, I would agree that it's a good idea for anyone contemplating marriage to discuss their expectations about children and other important matters, so as to ensure that their expectations are compatible. If the prospective dad knows he's likely to have an autistic child and plans on spending many happy hours building model trains with the kid, whereas the prospective mom knows nothing about autism and is a social butterfly who wants to enroll the kid in the most popular preschool and have frequent playdates with her friends' children, that probably isn't going to work out very well.

But autism shouldn't be regarded as a defect that a person has an obligation to disclose. Autism is a natural human variation. It's not in the same category as a home seller's duty to tell prospective buyers about a termite infestation or a drainage problem.

To the extent that the autistic husband-to-be in the above scenario feels obligated to discuss autism so that his future wife is not unfairly deprived of the child she expects to have, I would argue that this obligation runs both ways. The prospective wife may not know anything about autism, as such, but she does know that her fiancé is an introverted guy who prefers model trains to socializing. In the interest of fairness, maybe she ought to disclose something like this:

"Honey, before we get married, you need to know that I socialize obsessively. This is a highly heritable neurological condition, and if we have children, they could turn out to be just like me. They'll constantly run in and out of the house with a gaggle of friends, laughing and shrieking. Telephones will be glued to their ears at all times. Their idea of conversation with us will consist mainly of nagging us to drive them to the mall, or the movies, or the roller rink, or wherever their friends happen to be hanging out. Their favorite hobby will be shopping. Would you be able to cope with that?"

On Cyborgs, Cures, and Choices

Whilst wandering around the Web a few days ago, I came across an article that contrasts neurodiversity and transhumanism. The author seems to be arguing that neurodiversity is about celebrating one's natural brain configuration and that it is diametrically opposed to transhumanism, which, according to the author, increases disability prejudice by treating species typical cognitive functioning as a disease.

I think he's wrong on both counts. As I see it, both neurodiversity and transhumanism are primarily about self-determination. When I write about neurodiversity, I am asserting that cognitive diversity is beneficial to the human species, just as other forms of diversity are valuable, and that people should never be forced to conform to some arbitrary concept of the ideal brain (whatever that might be) or treated as second-class citizens if they do not.

Whether or not a person's brain configuration is "natural" isn't the issue here. To me, neurodiversity means that every one of us is worthy of respect, acceptance, and equality—regardless of whether we were born with our current set of cognitive traits, or decided to take medication to alter some trait (such as to reduce anxiety), or chose to get some sort of cybernetic enhancement of the brain, or whatever. In a world that truly valued human diversity, a person wouldn't be judged as more or less valuable based on whether his or her brain was in its "natural" state, and there wouldn't be any coercion one way or the other.

As for the complaint that transhumanism views the natural body as diseased (which it does, to some extent, in seeking to cure the aging process), mainstream medicine already treats the degenerative conditions of old age as diseases—just not very successfully! There's a lot of research being done to find a cure for Alzheimer's disease, for instance, which is a major killer of the elderly. If we're including Alzheimer's and other age-related dementia in our definition of species typical cognitive functioning (as we should, because it is typical to develop some form of dementia in old age), the disease model is commonly applied. Not all that long ago, however, people took it for granted that "senility" was natural and inevitable. The recent change in society's attitude toward dementia didn't come from widespread acceptance of transhumanist philosophy; rather, it came from discovering the medical facts.

Although our scientific knowledge is still quite primitive in many areas, we already have reached a point where no citizen of a modern industrialized nation goes through life with his or her body in a natural, unaltered state. We have our teeth repaired with various artificial materials when they decay or are damaged, instead of believing it natural (as our ancestors did) to end up toothless in old age. Many of us choose to control our fertility with synthetic hormones. We wear contact lenses or have surgery to correct our nearsightedness, and if we develop cataracts as we age, we are likely to have artificial lenses implanted in our eyes.

I expect the vast majority of us would consider the availability of these modern medical technologies to be a significant advance for humankind, rather than lamenting that we're no longer constrained to live in a state of nature. While we do need to be vigilant to ensure that no medical procedures are performed against a person's will and to prevent discrimination on the basis of a person's mental or physical configuration (and I'm not just referring to disability discrimination here, but to all coercive expectations regarding the human body), there's no inherent contradiction between the values of neurodiversity and transhumanism. Both seek to expand our options in life and the diversity of our species.

Simulation

In a recent post, Jannalou discussed an educational charity in British Columbia that gives presentations in schools about autism and the diversity of the human mind. The group, which is called the Friend 2 Friend Social Learning Society, teaches children that differences are okay.

I haven't seen the presentations firsthand, but from a look at the Friend 2 Friend website, it's clear that the group understands that autistic children want to have friends—that they're not antisocial or oblivious to their peers' existence, but instead have problems making friends because their peers are ignorant about, and uncomfortable with, their differences.

This is a very important point. All too often, when autistic children do not have friends, they are assumed to be suffering from some mysterious and innate social defect. It's quite refreshing indeed to discover professionals and educators like those at Friend 2 Friend, who recognize that the main problem is prejudice and that the "cure" is teaching the majority population not to fear autistics.

As Jannalou points out, however, there are aspects of the Friend 2 Friend program that need to be changed—in particular, a "sensory simulation game." By their nature, disability simulations tend to create a misleading and overly negative impression of whatever condition is being simulated. Jannalou also observes that accurate information about autism often is hard to find and that common points of reference can be hard to identify and explain. She asks: What are good experiential alternatives to disability simulations? How do we get the right information out there?

I have a few thoughts. First of all, the ultimate goal isn't to teach children interesting facts about autism, but to integrate autistic people into mainstream society on equal terms with other citizens. As such, we have a useful historical point of reference for this effort: Racial integration in the schools. It's not an exact parallel because society did not categorize autistics as a minority race in past generations; however, we do have a nasty history of "nerds" being bullied in the schools, and this prejudice is akin to racism in that the victims are singled out because they are perceived as a different kind of people.

Although the concept of the autism spectrum is a very recent development, there are many parents and other family members who, during their own school years, had only a few friends because they were seen as "nerdy" or "weird." That is to say, the label may be new, but the prejudice is not; we're talking about a minority group that, while never officially segregated, hasn't been fully integrated into mainstream society in the modern era, either.

How did educators deal with the challenges of racial integration? Certainly not by putting Afro wigs on the white kids or otherwise trying to simulate the experience of being black. Nor did they bring games into the classroom to teach selected facts about blackness, without any actual black folks being involved. Rather, they emphasized making personal connections with real people. Black community leaders came into the schools and gave presentations about their culture and history. Teachers made a point of regularly assigning children of different races to work together on class projects and community activities. Educational television programs like Sesame Street showed children of all colors playing happily together.

I'd like to see Friend 2 Friend get together with The Autism Acceptance Project and create school presentations in which autistic singers and artists visit the schools, talk about their lives, and display their art; autistic university students discuss their interests, their ambitions, and what has made school easier or harder for them; people from multigenerational autistic families build exhibits illustrating their family's culture and history; and so forth.

Shopping for Neurodiversity

Now, through the wonders of the Internet, you can contribute to The Autism Acceptance Project at no cost to yourself, while doing your regular shopping through major online stores.

When you buy products through the TAAP page on GiveBackAmerica.org (which bills itself as "America's Online Charity Mall") the sellers will donate a percentage of your purchases to TAAP. Participating stores include such well-known retailers as Barnes & Noble, Target, Best Buy, Office Depot, and many more.

I would like to thank Rob LaPlante of GiveBackAmerica.org for providing this opportunity for the autistic community to financially support TAAP's goal of promoting acceptance of, and accommodations for, autistic people in society. Unlike some other nonprofit groups that claim to speak for our community, TAAP has autistic board members and takes its direction from those who are the most affected by society's attitudes and prejudices toward the autistic minority population, that is, autistic people ourselves. TAAP presents lectures and exhibitions to raise awareness of autism as part of human diversity, and it seeks to investigate and support educational needs backed by accurate science.

Those who would like to see more understanding and acceptance of autism in our society can now contribute to the cause simply and easily. I've linked to the TAAP shopping page in my sidebar, and I encourage other autistic rights bloggers to do the same.

Diversity and Representation

Who can be a leader in the neurodiversity movement?

This question was raised in two recent posts by Laurentius Rex and Kevin Leitch. They ask: Should we be concerned that the parents who are blogging on the Autism Hub have a significant amount of influence in shaping the discourse? Are these parents somehow "hijacking" the neurodiversity movement and taking it away from its rightful owners, autistics (or people with psychological diagnoses in general)?

I don't think so.

That criticism arises from the disability rights motto "nothing about us, without us." And to the extent that we're talking about specific disability rights issues, I agree that the people who are directly experiencing these issues are the most qualified to speak about them. However, that does not necessarily equate to having a particular diagnosis. I would not, for instance, proclaim myself entitled to make policy decisions about augmentative communication devices simply by virtue of being autistic, when I've never used any such devices. Conversely, there are many non-autistic people who cannot speak and who use or could benefit from augmentative communication devices (because of stroke, head injury, etc.), and their views ought to be given substantial weight. More simply put, disability self-advocacy is about practical real-life needs, not parlor games with labels.

It's all very well to say that parents who have no disabilities should not be at the forefront of disability rights advocacy, and that makes sense as far as it goes; but I think we need to carefully examine just how far it goes, so that we're not conflating all sorts of other things with disability rights advocacy.

When we're talking about neurodiversity in the abstract, the concept encompasses much more than disability. It's about social acceptance of cognitive and behavioral differences, regardless of whether those differences are, or are perceived as, disabling.

To illustrate this point, here's a hypothetical situation: A young immigrant who was raised in a traditional Asian family graduates from school and gets a job with a large corporation. Because of his cultural background, he does not make eye contact with supervisors, appears very introverted by Western standards, sometimes misunderstands social expectations and the complex nuances of the English language, and gives the impression of being obsessively focused on his work.

One of his classmates, who is not an immigrant, exhibits precisely the same behaviors and has an Asperger diagnosis. He gets a job with the same company. Both of these young men soon become targets of bullying and discrimination in the workplace.

The immigrant, who clearly does not have a disability, files a complaint of an equal employment opportunity violation, claiming national origin discrimination. His autistic co-worker, on the other hand, does not belong to a protected group under the equal employment opportunity laws and can only claim disability discrimination, if he's to get any legal redress at all... but he is likely to have a hard time proving that he was targeted because he was perceived as having a disability. Chances are, he was just seen as different and weird, rather than as disabled.

Although this young man could perhaps win his disability discrimination lawsuit (and I'm certainly not trying to discourage anyone from filing such complaints), the root issue here isn't his abilities or the perceived lack thereof, even if that has to be the focus for legal purposes. The underlying issue is society's intolerance of anyone who deviates from its narrow cultural expectations.

Intolerance affects everyone. It's not the exclusive province of any particular minority group. Society is very fickle, and any of us might end up in a socially rejected group at some point in our lives, even if we originally were seen as part of the majority. In fact, that's exactly what happened to many autistics. When the Asperger diagnosis came into use in 1994, large numbers of people were classified as having a mental disability, even though their particular quirks previously had been accepted as within the range of normal human variation.

As I see it, the Autism Hub is the blogging equivalent of a diversity seminar in which people from different backgrounds get together and discuss how to overcome prejudice. Everyone's opinions and experiences are valuable in this context. When parents describe how they learned to accept their autistic child's differences, they are teaching other parents how to do the same. Although we may dispute whether these parents ought to be viewed as disability rights advocates, we shouldn't be so caught up in that dispute as to overlook the big picture—that what they are doing is vital to neurodiversity.

If Kev, Kathleen, and Estee all went out and got an Asperger diagnosis tomorrow, that would not, in my view, affect the validity of their message one iota.

Suboptimization

Suboptimization is an industrial term that refers to the common management mistake of adjusting a machine or process for maximum local efficiency, while overlooking the impact on production as a whole, thereby causing a decrease in the overall efficiency of the production line.

In the management book The Goal, Eliyahu Goldratt gives the example of a decision to make machining centers in a factory more efficient by increasing the amount of metal taken off with each pass of the cutting tool. Instead of shaving a chip one millimeter thick, the tool took off three millimeters. This made the machining of the parts a much speedier process and reduced the cost of operating the machining centers. Increasing the amount of metal taken off on each pass made the parts brittle, however, which necessitated heat-treating. The increased load on the furnaces gave rise to a serious bottleneck in heat-treating and made the plant significantly less productive and less profitable.

A similarly shortsighted thought process seems to be involved in today's clamor to cure or prevent autism and other developmental differences. Autistic children need more and/or different resources in the educational system, the reasoning goes. Therefore, our schools would be much more efficient if they did not have to educate autistic children or provide related services such as speech therapy. Proponents of this view assume that reducing the cost of education by preventing the existence of autistic children would translate into a more profitable economy.

This is a classic example of the suboptimization fallacy. Is a standardized, low-cost school system the ultimate goal of human society? Most people wouldn't think so. If a successful economy is the goal, then, which would be analogous to a company's ultimate goal of making a profit (leaving aside issues of spiritual and moral growth), how do we get there? We live in a highly complex society with an advanced, technologically dependent economy that requires a great variety of skills in its workers. Therefore, the most efficient educational system, from the standpoint of increasing the productivity of the modern economy as a whole, is one that produces workers who are diverse enough to give employers the flexibility to fill a variety of specialized niches.

In many other contexts, such as the hiring of workers with different cultural backgrounds, employers recognize that more diversity in today's global workplace increases productivity and profit. It's about time more people became aware that this is also true of diversity in learning styles, communication, and cognitive abilities.

Mixed Signals

And now for something completely different.

Instead of the usual cabal of evil eugenicists plotting to wipe autistics off the planet, we have kindhearted state legislators who apparently want to help us reproduce. Yes, really. Take a look at New Jersey's Senate Bill 690, which has been approved by the New Jersey Senate Health and Human Services Committee:


The purpose of the initiative shall be to provide vocational, educational and social training services to persons with Asperger's Syndrome, through community-based service sites, which offer these individuals appropriate support, guidance and education to enable them to: further their education, achieve gainful employment, develop meaningful friendships, and become broadly competent adults who are able to lead fulfilling lives.


What a nice bunch of senators. They want to help us go to college, get good jobs, and even improve our friendships and (presumably) our love lives. If they keep on this way, they might even start believing we're human.

More seriously, this bill does seem to be part of a genuine effort to integrate autistics into mainstream society, even though its language is ridiculously paternalistic (and contains some inappropriate references to "suffering" and "psychosis"). Ari Ne’eman of the Autistic Self Advocacy Network was invited to present testimony at a hearing on the bill, which is definitely a good sign; at the very least, it is an acknowledgment that autistic citizens are entitled to a voice in their own government, just like everyone else.

Still, this legislation is seriously flawed because its approach is based on guesswork, not fact. More specifically, it is based on a relatively recent hypothesis that has not been conclusively established—the idea that autistics lack the ability to understand body language and other nonverbal social signals. Scientific research in this area is still in its infancy. We don't yet know why there are differences in social behavior between autistics and non-autistics, and we don't fully understand the nature and extent of these differences.

In a discussion on my blog not too long ago, Phil Schwarz posted a link to a comment he wrote on another website, in which he hypothesized that the social advantages of non-autistics may simply be a consequence of their status as the majority population. It's possible that autistics can read the body language and social signals of other autistics just fine, but because we are such a small minority, maybe we don't spend enough time around other autistics for that ability to be noticed. Likewise, non-autistics may be just as clueless (or even more so) at reading our body language as we are at reading theirs. For all we know, the human species may be divided into several naturally occurring social subgroups, each with its own genetically determined style of social interaction.

This isn't just an abstract discussion of various possible permutations of social behavior. It has real-life ramifications. If there is only one type of nonverbal social signaling that goes on among humans, and non-autistics know it instinctively while autistics do not, then the proper course of action may well be what New Jersey is doing: Provide social skills training to help autistics cope with an innate lack of social ability. But if, instead, there are different kinds of nonverbal social behavior that come naturally to different kinds of people, then we shouldn't be declaring the majority's form of social interaction to be superior to all others. Rather than sending the autistics off to social skills classes for training in how to behave like non-autistics, we should be sending everyone to neurodiversity seminars to teach them that it's OK for human beings to have natural differences in social behavior.

With so much prejudice out there, and so many unfounded assumptions and unproven hypotheses floating around, governments shouldn't be creating major new autism policy initiatives based on anything that hasn't been thoroughly researched and shown to be scientifically accurate. Given the current woeful state of the science, that means we should proceed with extreme caution when making any policy decisions concerning autism.

The Autism Reality Calculus

Supporters of neurodiversity often say that it is inaccurate and harmful to predict that a child who is on the autistic spectrum (or who has other neurological differences or disabilities) will never leave home, attend college, work, marry, et cetera. In response, some parents who are advocating for more services point out that not every child can realistically be expected to live independently, without extensive services.

And you know what? Both sides are right.

Our society has placed a large number of rigidly defined expectations under the rubric of "living independently." But the reality is that it is not a simple matter of ticking off abilities and accomplishments on a life-script checklist until we reach the magic number. Living independently is not a binary either-or state; rather, it's a complex multivariable equation.

Nobody in our society is fully independent; we all need many services from the world around us, and the nature of those services will be different for every person. Instead of arbitrarily and unreasonably dividing our society into groups of independent people and dependent people, which stigmatizes the latter and often places unnecessary stress on the former, we should focus on identifying particular needs and finding realistic solutions that actually work for each individual.

Not every child who has a neurological difference or disability is going to be self-supporting as an adult. But then, not every child who happens to be in the neurological majority is going to have a good job, either. Many external factors are involved, such as the availability of jobs in the economy at a particular time, how well those jobs are suited to each individual's abilities, the level of technological development, cultural expectations for certain kinds of people (for example, until recently, women were not expected to hold jobs) and so forth. There are just too many variables involved for anyone to make accurate predictions about what a child, whether autistic or not, will be doing in the long-term future.

Kristina Chew just wrote an excellent post about her choice to enjoy every day with her son, instead of worrying about his future and trying to predict what his life as an adult might be like. This is how she describes this decision:


I was not simply missing the forest for the trees; I had my eyes focused on images of what the youngest saplings might look like in 30 years. By preparing for a future I can only speculate about, I was not able to get the watering done and observe the new leaves growing on the branches.


As the snow melts in the Northern Hemisphere and spring's new growth begins, it's a good time to take a look around and appreciate the beauty and wonder of existence. The world is a fascinating and diverse place with many ecological niches, not just for plants and animals in nature, but also for human beings in our complex and technologically advanced society.

On Being Normal

Just a few observations about normal development...


It is normal to grow a beard if you are male.

It is normal to develop breasts if you are female.

It is normal to have dark straight hair if you are of Asian descent.

It is normal to have dark curly hair if you are of African descent.

It is normal to have red hair and freckles if your ancestors came from certain Northern European tribes.

It is normal to have six fingers on your hand (or six toes on your foot) if you belong to a group called the Druze, who are found in Lebanon and other parts of the Middle East.

It is normal to have a loving relationship with a person of the same gender if you are gay.

It is normal to communicate in sign language if you are Deaf.

And it is normal to process speech and social interaction in autistic ways if you are autistic.

So... can we all please quit talking about "normal development" as if there were only one kind?

A Delicious Rat Burger

There's a hilarious scene in the movie Demolition Man where Stallone, while walking through an underground rebel encampment, decides to stop and buy a burger from a Hispanic pushcart vendor. His companion points out that this might not be the best idea because, as anyone can see, there are no cows underground. Stallone asks the vendor what kind of meat is in the burger.

STALLONE: De que es esta carne?

VENDOR (cheerfully): Esta carne es de rata!

STALLONE (sputtering and looking disgusted): Rat? This is a RAT burger?!

VENDOR: Si! Si!

Stallone, who ate some dull and tasteless health food in a previous scene, thinks about it for a moment. Then he wolfs down the rat burger and tells the vendor, "Delicious."


I was reminded of that movie when I read Kathleen Seidel's post about the new book by Professor Roy Grinker, Unstrange Minds, which explores the historical and cultural context of autism from an anthropologist's perspective and concludes that there has been no autism epidemic. In response to the book's publication, both Time and Slate have published articles sympathetic to the view that what is now called "autism" always has been part of human diversity throughout the world. Kathleen's post mentions that Professor Grinker's research on autism in Korea was funded by the National Alliance for Autism Research (NAAR), which has merged into Autism Speaks.

The post also discusses how Autism Speaks, after becoming aware of the book's content, reacted by employing an anti-vaccine consultant to solicit hostile parent comments about the book. Kathleen, who is a master of the art of understatement, describes this as "ironic." I'd say that the irony is so thick here, you could cut it with the proverbial knife. Or spread it on your rat burger with your ketchup and mustard.

Thanks so much for bringing the message of neurodiversity to the mass media, Autism Speaks/NAAR. Very tasty indeed.

Everyday People

I've been pondering human differences and our perceptions of them since I read Lili Marlene's recent post, I’d just like to set you all straight on a few points, in which she explains that autistic people are not sufferers, or antisocial, or part of an epidemic, but always have been part of human society. She writes:


...some of the most unusual people are some of the oldest. You know, back in the old days people had better things to do than run their kids around to psychologists and speech pathologists to get them labelled with some dire diagnosis. They had more pressing tasks to accomplish, like finding enough food for a family to eat during a major economic depression, or fighting in wars.


And she's quite right about that. When people are busy going about their everyday lives, many of them are not going to have the time or inclination to agonize over what someone else might think of their personal quirks (or those of their family members).

Even when there are no wars or other major calamities going on, people often don't pay much attention to differences that have not been pointed out to them. There is a tremendous amount of natural variation in the human species, and when people have not been taught to fear a particular type of difference (such as by autism-awareness campaigns), they are likely to view that difference as part of the landscape of ordinary human life.

I got a comment recently that asked how old I was when I learned to talk. I never did answer it because, the more I thought about it, the more I realized there was no clear answer. When I was a child, I just assumed that I learned to talk the same way everyone else did. Looking back, though, I don't recall many conversations in my early years. I remember repeating phrases that I thought were funny and giggling over them. I remember singing songs, or parts of songs, over and over. That seemed, at the time, to be a perfectly reasonable and amusing use of words. At what point did I have "normal" speech? Who knows? When I was a little kid, I didn't spend any time wondering what other people thought of my speech.

To be pedantic about it, I still don't have "normal" speech. I sound autistic because my voice isn't modulated the same way as most other people's voices. I have a much narrower range of tone and inflection, and it's often outside what might be considered the average range. Usually people can understand me well enough, but I sometimes have to repeat a word or two. I suppose you could call that a speech disability, although (like many things that are called disabilities) any problems I encounter are the result of other people's prejudices, rather than an actual lack of ability. If I didn't have to worry about being discriminated against because of my voice, it would be no more of a problem than speaking with a regional accent.

When I was a child, I often wandered away, climbed tall trees, played in traffic, and didn't pay much attention to adults who told me that I was not behaving properly. That didn't mean I had some sort of tragic and mysterious mental defect that made me incapable of social interaction, understanding danger, etc., and what's more, I certainly wasn't suffering or trying to escape from life. Quite the contrary—being alive seemed like a wonderful adventure, too precious and fascinating to be wasted sitting obediently in dull classrooms. I got kicked out of several primary schools for wandering away when the teacher wasn't looking, but I never thought that made me abnormal, either; I just thought schools were inhabited by narrow-minded conformists. I wanted to explore the world, going on brave quests like the kids in my favorite adventure stories. No doubt my view of life was absurdly melodramatic, but I'll tell you what: Those who would describe my existence as a devastating tragedy are being far more absurd.

There's a post on Joel's blog called Celebration of Interests, in which he asks autistic bloggers to write about their perseverations. Like most of us, I've had quite a few interests over the years. I remember being fascinated by ladybugs as a child because they had so many different patterns of spots. They seemed almost like dominoes come to life. I had a notebook in which I drew pictures of ladybugs with various numbers of spots and kept track of how many of each kind I saw.

I wonder, though, if autistic perseverations are really all that much different from anybody else's interests. There are plenty of non-autistic folks out there who spend huge amounts of time talking about football, celebrity trivia, or politics. Because their interests are common and socially accepted, they don't get called obsessions or perseverations—but what's the difference, really?

At the moment, I don't have any strong interests other than this blog. I believe that my reasons for blogging are about the same as most other folks' reasons—to share my thoughts and concerns with the world, to be part of an online community, and to learn from others. I hope that, as we begin another year, all of us who blog worldwide can gain more understanding and acceptance of our fellow human beings and our everyday differences.

Happy New Year 2007.