Making the Case for the Boring Autistic
Many years ago my oldest son was heavily into action figures. In his room there were boxes of Teenage Mutant Ninja Turtles, Transformers, Power Rangers, X Men, and Marvel superheroes, to name just a few of the sets in his collection. He would spend hours posing them or making them shoot at each other. The best ones—the most prized—were the ones that had buttons on the back that allowed you to shoot the enemy with the least amount of effort. The buttons were spring loaded to give you a nice trajectory on your arrow, or whatever else you were trying to hurl at a villain. Not every figure of his had a button, but each had a special costume, firing action, or superpower—something that made him worthy of hours of playtime. Each Ninja Turtle could be identified on the basis of his mask color and preferred set of weapons. Spider Man could shoot out a red plastic web at the touch of a button, and Wolverine could alternately flex and retract his claws. He had a set of knock-off mini Transformers that could change from robots into dinosaurs and vice versa. They were all very cool, and they could all do something.
One day I came home from McDonald’s and brought my son some kind of figure: maybe an animal, maybe a hero. I wish I could remember what it was, but that’s not the point. The point is what he said to me when I handed it to him. He looked at it in a bored sort of way, turned it over to check it out, and then looked up at me and said, “Yeah, but what does it do?” I knew what he meant, of course, since we had spent plenty of time on the floor together playing action figures. I knew how important it was for there to be removable armor and an arsenal, and I knew how fun it was to push a button and see a javelin shoot across the room. But I pretended to be offended by that statement, putting on my Mom hat and trying to turn this into a teachable moment.
“What do you mean, what does it do? You are supposed to use your imagination and make it do things!”
Like I used to do when I was a kid ... I think.
Not surprisingly, my son didn’t buy this let’s-get-back-to-basics speech about how to play with toys, and he never did end up playing with the little figure from McDonald’s. A few short years later, he stopped playing with action figures, and they are all stored in plastic boxes up in our attic, alternatively melting and freezing with every passing season.
In the world of autism, if autism really is a world and not just millions of tiny worlds or multiple realities within the same world, there seems to be a strong drive not only from the outside but also from the inside, even among self-advocates and parent advocates, to make sure that autistics are described in terms of their special abilities, or what I’m going to term autistic superpowers. I have detected a new Seinfeldian sensibility about autism and autistic people that goes something like this:
“She’s autistic—not that there’s anything wrong with that—but she can ______!”There is a certain political correctness that has creeped into the “autism conversation” these days, and to me it sounds a lot like an “ism” (e.g., multiculturalism, racism): Let’s just call it aut-ism. The problem with isms is the general tendency to downplay anything that is either negative or contradictory to the theory at hand, and to overemphasize anything that is, or seems to be, positive or “celebratory.”
[sing, read from birth, play piano, mirror write, program computers, compose symphonies at age 3, paint masterpieces, recite all the state capitals in reverse alphabetical order, raise awareness of autism, talk to animals, be the “face of autism”…]
I have been heavily involved in autistic advocacy over the past year or so, and in that time I have witnessed a tendency among some parents to publicly and repeatedly highlight the special talents of their autistic children. As a parent of two autistic children, I have demonstrated this same tendency, so in no way am I pointing the finger at others and not also myself. For example, I have found myself telling other parents, teachers—pretty much anyone—all the “amazing” things that one of my two autistic sons can do, such as playing piano and programming my mother’s VCR. The trouble is, these things are really not all that amazing. What am I trying to prove? I’ve seen other autistics described as “savants” because of their ability to read or compose poetry. Any autistic who can do anything they are not generally expected to be able to do based on their behavior or IQ is fair game for being called a savant, both by those who know better and by those who don’t.
Certainly you could argue that it’s just a natural instinct for all parents to brag about their kids, and that this doesn’t have anything in the world to do particularly with autism. You could be right. But if I thought parental instinct were all that was going on here, I wouldn’t be speaking out about it. I have one neurotypical child, and his friends' parents do not brag about their NT kids in quite the same manner or intensity as I have seen in many parents of autistics. My goal is not to assign blame, but to identify possible root causes of this behavior.
I believe that at least three things are going on here, and they might even be going on at the same time in the same individual despite the inherent contradictions:
1. Many of us have bought into the notion that if your child is autistic, you had better highlight (if it is obvious) or scramble around looking for (if it is not) what they are good at—what they can do—as if to make an apology to society for the fact that they are autistic. Some parents may also (or instead) have a tendency to play up and emphasize the supreme talents of their NT children. The motivation for all of this bragging seems to be the same, whether the bragging focuses on the autistic or the nonautistic children in the family: To offer up something desirable to the public eye as a peace offering for the autism.
2. Many of us have been encouraged by our peers in the autism advocacy movement to look back into history for role models and icons who were likely or even probably autistic, and we have on some level (fairly or unfairly) looked at our children against the backdrop of Mozart and Einstein, leaping at anything that our kids do that seems to continue along the path of our Autistic Forefathers.
3. Many of us are deeply concerned about our kids’ futures. By grabbing onto and emphasizing anything that they can do that we perceive could be made into a career or at least a living, we assure ourselves—and the outside world—that when we die our children will be able to live independently.
On some level, parents of autistic children are made to feel that they must make the case for their children’s worth—but by whom? Is society sending out these messages, or is this impulse to prove something merely the product of normal human insecurity and an effort to put a positive spin on a difficult reality?
The only "face of autism" that the general public sees is the face that is fed to them through the media. Coverage of autism is scarce, both in film and documentary, and of these there is little if anything that bears any resemblance to reality for most autistics. That is because autistic people are not the ones in control over the content and the message of what is being presented. Everything I have seen thus far in the media has sugarcoated autism by offering up something in return for the autism, something that makes it worth the viewer’s time to be watching anything about a “retard” in the first place. Take two movies, one pretty good (I have seen it several times) and one pretty bad (I have not seen it and don't want to): Rainman and I Am Sam. In both, the main character has something of conventional value designed to make the viewer laugh, or cry, or marvel, or wonder if autism really is such a scary monster after all.
Rainman is the tale of an autistic savant based mainly and loosely on the real-life autistic and savant Kim Peek. Sure, there really is such a thing as Savant Syndrome; and sure, not all autistics are savants; and sure, not all savants are autistic. That is hardly my point. My point is this: Imagine Hollywood making a movie called Rainman, about an institutionalized guy named Raymond Babbitt who had no special talents or skills, who rocked and talked to himself and made no eye contact. Period. Imagine the part about card counting in Vegas being edited out of the movie, but the parts about needing to buy underwear at K Mart and needing to watch Judge Wapner being retained. This wouldn’t make for very interesting viewing, would it? Raymond’s “annoying” habits and interests are endured throughout the movie because the payoff is getting to see Raymond’s other-worldly ability to count, memorize, and help his brother cheat at black jack. Don’t get me wrong: I still loved Rainman, especially the bathtub scene. I’m not knocking the movie as a movie. I’m trying to identify the underlying message that society seems to be both sending and receiving when it comes to autism and autistic people:
What can you do?
I Am Sam isn’t anywhere near the filmmaking caliber of Rainman, and Sam’s character couldn’t be more different from Raymond’s. So why even bother to mention this inferior movie? Sam is supposedly both autistic and mentally retarded, but he has superpowers too. He is portrayed as a father with a mental age of 7, who just happens to have a group of helpful friends and a lawyer willing to work pro bono to help him gain custody of his 7-year-old daughter. He is able to hold down a job at Starbucks, pay for his own apartment, and raise a child on his own. His daughter isn’t just smart; she’s precocious. The moral of the story is that love and will power conquer all…including reality, I guess. It is the stuff that comic books and fairy tales are made of.
It isn’t just Hollywood that is guilty of wrapping autism in a mantle of talent and virtue. There is such a dearth of anything remotely close to real life when it comes to autism on the screen, that the recent Nightline episode “A Place in the World” was met with acclaim even among autism self-advocates and parent advocates, including myself. We were all applauding the way the show was handled, but many of us failed to detect what for me is now the all-too-predictable set-up: Autistic subjects of documentaries also need to have a trick to perform. Otherwise, who will watch it? How will the show make money off of its advertisers?
The premise of the show, “What happens when all these children grow up?” was definitely a good one. Autistic adults who are not fully independent, and are aging out of whatever system they are in, could end up returning home to their aging and perhaps ailing parents who may not be able to handle the physical, emotional, and financial demands put upon them by the transition. The point of the story was to expose the fact that autistic children actually do grow up to be autistic adults who continue to need services: they don’t just disappear. For that issue, the journalists who put together the documentary should be applauded. However, I can’t help but point out that the two autistic adults showcased in the documentary also just happened to have a talent or two:
Jamie Hopp is described as “profoundly autistic”…but she can sing, and in front of an audience.
Paul DiSavino is videotaped perseverating about a scene from Sesame Street, and his mother laments that the alternative to a group home for Paul would be “unbearable”…but he works and plays piano.
Take-home message: Autistics are good for something. They are not throwaways. They have something to give back to society. We as a society need to plan for their future.
Okay, I think we can all agree with that. Here’s the problem: Why don’t they ever show autistic people who don’t have any measurable or recognizable talent, employable skill, or something else that could at least fascinate or intrigue the viewer? If an autistic is presented along with a heavy dose of pathos—
"He [Paul DiSavino] will not survive it … it would be regressing back to the institutions, back to not caring, just doing, just warehousing them … not recognizing what's important, and just abandoning them."
—that pathos tends to be balanced by something good or positive so that everyone can walk away feeling better about what they just saw, or better for having been given a different point of view about something they thought they understood.
Autistic people can be just as boring and ordinary as anybody else, but boring and ordinary don’t make for good television or film. Autism is “in” these days, but not much has changed since Rainman debuted in 1988. The autistic mystique invented by the media can be considered as inherently prejudiced and damaging to autistic people as the concept of the noble savage:
The noble savage is inherently good, but he only transmogrifies from an animal state to a human state when he becomes civilized.
The autistic is inherently gifted with talents that normal people could never manufacture within themselves, but he only becomes interesting enough to talk about when his autistic gift is considered intriguing, useful for raising awareness (read: money), or marketable.
Several months ago, a bunch of us in the autism self-advocacy movement got together and made a poster simultaneously mocking those who thought the Autistic Liberation Front was an actual organization and having a good laugh at seeing ourselves dressed in costumes of all sorts. We were the “ALF Superheroes,” and my submission for the poster was an old picture of me dressed as the Scarlet Witch, my favorite X Men character from childhood. Someone was dressed as a character from Star Trek, and someone else was a giant M&M. The poster was truly hilarious.
In all seriousness, though, most of us are not superheroes let alone superhuman. And yet there are some people within the autism self-advocacy movement who are quite serious when they suggest that autistic people could be the product of an evolutionary change in humankind, leaving mortal NTs in the dust. The “proof” behind that theory is all the nifty things that autistics can do that ordinary NT people can’t. What about the “other” autistic people? What if they never learn to read, or write, or talk, or compose, or hold down a job? What about them? If all of the autistic superheroes out there are a step higher than their NT counterparts, what about the autistic leftovers: are they a step below NTs? Have they devolved? There can be no self-advocacy without solidarity. As it is, there is little solidarity between “Asperger’s folks” and all those hard-core autistics, as if the line were that sharp between the two allegedly distinct groups. It disturbs me, even pains me, to see a new elitism cropping up even among autistics who don’t carry an Asperger’s diagnosis.
Many years ago I gave my son a toy. He chose not to play with it because it didn’t “do something,” and playing with a toy that didn’t do something seemed to him to be more trouble than it was worth. It took too much effort for him to find something valuable in that little figure—whatever it was—and he lacked the imagination to try, not because he wasn’t smart or creative, but because the toys he had grown accustomed to enjoying had weapons and moveable joints. This new generation of toys was action-packed and exciting, so he ignored what he considered to be a boring toy. What he failed to realize was that the toy was only as boring or interesting as his own imagination, and that it was not limited by the number of weapons it could hold or the fighting force of the button on its back. It could go anywhere, do anything, be anything my son might have wanted him to be, had he only taken the time to consider its possibilities. Or, it could have been nothing obvious, nothing discernible. It could have just been incorporated into the other group of toys he was playing with, and yet out of the action…an onlooker, maybe a watchman.