Recently, a short informational article was posted to the IEET site entitled, Autism Bad For Siblings And Society in response to an autism-spectrum-themed issue of the Archives of Pediatrics & Adolescent Medicine.
This article referenced two studies: one on social and communication “problems” in siblings of autistic children, and one on the expenses incurred by autistic individuals over the course of their lifetime.
The article about siblings seems to indicate mainly that siblings of autistics can have autistic traits (or perhaps even be autistic themselves), which of course makes sense when you consider that autism has a strong genetic component. The characterization of this phenomenon as autism being “bad for siblings” is more than a bit misleading—it’s not as if, somehow, the autistic sibling hadn’t been born, the children being studied would not have exhibited the same social and communication patterns. If someone is going to be autistic, or perhaps broader autistic phenotype, they’re going to be that way regardless of whether they have siblings or not.
What struck me about the article on siblings, though, was the manner in which the siblings’ performance was described:
“Younger siblings of children with autism spectrum disorders demonstrated weaker performance in non-verbal problem-solving, directing attention, understanding words, understanding phrases, gesture use and social-communicative interactions with parents, and had increased autism symptoms, relative to control siblings,”
The reason that description struck me was because in all that verbiage, there was absolutely no questioning of the underlying assumptions in place. These assumptions are common in autism-related literature but very few people even notice them—to me, they’re like the proverbial “elephant in the room”. And just what are these assumptions? Well, first of all, the tests being used to evaluate the performance of the siblings of autistics (many of whom were probably autistic themselves) were probably not written with autistic cognition in mind. Second of all, I’m almost certain that the tests being used in this context probably assumed quite a bit about the childrens’ level of understanding based on the compliance of these children.
To make an analogy, watch any cat navigate around a house and you’ll definitely get the sense that you’re dealing with a creature with a highly developed understanding of physics, but tell the cat to fetch your slippers and you’ll probably not get much in the way of a response. This isn’t to say that all autistics are good at physics and bad at following instructions—but rather, that it doesn’t really make sense to assume an autistic person must be able to perform well on tests normed to a typical population in order to be happy or successful. I somehow doubt that cats wake up every morning lamenting that they’re not dogs—but who knows, they might if their human companions constantly punished them for not acting like dogs or doing things that dogs tend to do.
Whenever I read articles on autism so utterly dripping with unquestioned assumptions, I can’t help but think back to elementary school, when quite a lot about me was considered to be “problematic” or worrisome, even the aspects of myself that I really liked. If you’d asked my fifth-grade classmates about me then, they’d most certainly have said that there was definitely something very wrong with me, that I didn’t relate normally, and even that they felt sorry for me. In sixth grade a few girls came up to me and told me that they were being mean to me “for my own benefit”, since in high school, “everyone was going to hate me anyway”. I remember people wondering if I was sad or depressed because I often preferred to read or draw rather than engage in group activities—in fact, the main thing that made me tend toward sadness at times was the perception that whatever I liked to do was some kind of symptom or problem. I even once got in trouble for being really interested in a particular subject—the teacher assumed that my interest was a sign of being “too lazy to learn about anything else”.
I’m not saying all this to invoke a pity party—that’s the last thing I would want, especially considering one of the things that always infuriated me while growing up was the “we feel sorry for you for being you!” bit I used to run into at school. Rather, I’m just trying to make the point that kids like the ones I grew up with have also grown up. Some of them might even be in professions now where they’re evaluating kids. And unless they’ve had some kind of intense mind-opening experience over the course of growing into adulthood, it’s more than likely they’ve retained the same biases and playground prejudices that they had as preadolescents—not to mention the fact that teachers sometimes demonstrated similar biases. And I’m guessing that these biases weren’t somehow native to where I grew up. One of the things I want to cover in a paper I’m writing is the notion of bias in research and evaluation of autistics, since I see that as a huge problem, and one that quite probably leads to everything from unnecessary medication (since sometimes expressive language difficulties can be mistaken as a sign of “disordered thinking” and psychosis) to exacerbation of parental stress (since even well-meaning doctors are prone to “gloom and doom” predictions regarding a child’s future).
Some researchers agree that bias is a problem here, and are suggesting that it would probably be a good idea to involve actual autistics in autism research—even though autistics are extremely diverse, having some autistics involved in the research side of things is certainly better than having none.
Morton Ann Gernsbacher writes:
Why haven’t autistics’ own voices been heard? Why haven’t autistics been as actively recruited to participate in all aspects of the research process as they’ve been recruited to participate as research subjects (even posthumously by donating their brain tissue)?
Perhaps it’s assumed that autistics just wouldn’t be able to handle high-level research. If so, someone ought to tell Vernon Smith, who was awarded the 2002 Nobel Prize in Economics (alongside APS Fellow Daniel Kahneman) for pioneering the field of experimental economics. And somebody better alert Richard Borcherds, who was awarded the mathematics equivalent of the Nobel Prize—the Fields Medal—in 1998. Both academics are diagnosed autistics.
It takes just a cursory stroll through history to view the shocking collage of groups deemed incapable of stepping up to the research plate. In 20th century psychological science alone, we have Mary Whiton Caulkins, the brilliant protégé of William James who, by lack of a Y chromosome, was denied her PhD at Harvard (but who later became APA’s first female president). It’s quite unlikely that APA’s founder and first (male) president, G. Stanley Hall, believed that members of ethnic minority groups would be suitable research collaborators, given his disturbing attribution of “adolescent races” who “would be better in mind, body, and morals if they knew no education.”
Morton Ann Gernsbacher is one of those who, I think, really seems to “get it” with regard to helping reduce research bias and understanding what autistic people are really like I realize that the notion of autistics being valid people with actual minds is as weird for many as a discovery of a live Sasquatch might be, but at least there are some people helping to raise the right kinds of awareness so hopefully that won’t be the case in years to come.
And I’m sorry, but the “cost to society” stuff seems to me to be a matter of misplaced priorities (not to mention reminiscent of T4 propaganda—and if my making that comparison reduces the impact of what I’m saying, so be it—I’m just calling a spade a spade.) While of course people with actual problems should have access to help, it seems bizarre and downright un-technoprogressive to make the existence of certain kinds of people contingent on market demand.
Everything has a cost, and while some costs are certainly best alleviated, to propose that certain kinds of people are “bad for society” is to make a very serious claim (and on that note, why aren’t people more gung-ho about finding “cures” for conditions like sociopathy? Is it because sociopaths tend to be superficially likable and able to hold traditional jobs? Are those really the criteria that ought to be held up in evaluating the worth of a person?)
Autistic writer Joel Smith comments here on the subject of “cost to society”:
You see, the value of someone depends much on how you look at it. The value of the automotive industry is great when you look at the salaries of the workers, the profits of the shareholders, and the tax revenues to the government. It’s horrible when you look at the complete costs of the car - the costs to the environment in particular. TV isn’t seen as a “waste” but rather as a “necessity” nowadays. And air travel “enables global business,” whatever that means.
At the same time, there are teachers, psychologists, researchers, drug companies, alternative medicine practitioners, therpaists, health aides, group home workers, etc, who make their living providing a service to autistic people (however ethical that service might be) - just as the people who made your TV make a living by providing you with something you want or need. That $3 million dollars is not vaporized, but it’s used to pay for cars, TVs, and air tickets for people making money providing those services, the stockholders of commercial interests, etc. An expense is not necessarily “costly” to society.
It just strikes me as odd that the blanket statement “autism bad for siblings and society” was used here, without anything even resembling an examination of what “bad” and “good” are in this context. This isn’t about political correctness, it’s about realizing the extent to which cultures create themselves out of language. It’s fine to acknowledge some of the serious problems that can be faced by autistic people and their families and I do see the need for better services (of the sort that take individual needs and abilities into account, rather than working on the basis of stereotyping and heavy-handed overgeneralization). I realize that care and education can be expensive, but there must be a way to say that that doesn’t denigrate an entire, highly diverse group of people as “bad for society”.
Think about it: for all the whining and griping that goes on with regard to helping autistics and other atypically-functioning persons lead long, healthy, enriched lives, people don’t seem to have much trouble coming up with all the resources necessary to build things like baseball stadiums or stage live wrestling matches or fund any number of arguably extravagant pursuits. Once people decide to value something, it always seems that resources sufficient to sustain or obtain it appear—sometimes seemingly out of nowhere. Funny, that.
The fact of the matter is that when you invest in people, there’s generally always something given back, even if that something is not necessarily monetary—sure, you might end up getting more economic production out of a person if they are properly cared for and educated, but that kind of reasoning should never be invoked to determine the supposed worth of an individual anyway. These arguments, by the way, apply to longevity research as well—the earth most certainly has more than enough resources for the accomplishment of more than one goal.
And if anyone thinks that the arbitrary and bias-based devaluation of people who don’t function in ways that meet societal norms isn’t a problem for transhumanists, think again. Imagine walking into an airport with your neural-infrared prosthesis attached and being turned away at the security gate because your device “makes people unconfortable” or poses some kind of perceived security risk. The more intimately machines are integrated into the body, the more difficult it is going to be for existing human institutions to accomodate them. “Reasonable accomodations” could just as easily apply to willing cyborgs as to people presently defined as “disabled”, and unless we want to live in a world where ancient monkey energies tied in with notions of dominance hierarchies and exclusion of the different shape our societies, we need to come to an acceptance that there’s more than one valid way to be.
And I’ll admit that one reason I’m enthusiastic about transformative technologies (in the context of prosthetic self-determination is because it could be that once particular kinds of modification become affordable and widespread, variations like autism will suddenly look pretty insignificant in comparison to the newly-expanded range of possible shapes and modes a being might take on.