“Autistics” simply do not exist.

writes journalist Dan Olmsted in an Age of Autism post on the use of the word “retard” in the movie Tropic Thunder. He “really can’t stand” it when the “people with autism” are referred to as “autistics,” and he sees the word as a “corollary of ‘retards’.”

Olmsted refers here to an ongoing debate in the autism community, about whether to use the adjective “autistic” or the preposition/noun phrase “with autism.” Some prefer to say “autistic” to suggest that autism is part of a person; others prefer “with autism,” as it’s thought that this phrase suggests that autism is separate from a person. More recently, autistic adults and self-advocates (as on autistics.org) have been using the word “autistic” as a noun to describe themselves. Olmsted seems to think that using “autistics” to describe oneself is not the most appropriate and expresses a wish that persons who self-identify as autistic might “rethink the matter.”

Olmsted’s “best argument” for why it’s incorrect to use “autistics” as a noun is that

“In my Webster’s, at least, there is no such use of the word.”

Words’ definitions change and evolve over time; words acquire meaning and new meanings through common usage, well before they are added to dictionaries and become “official,” and one individual can hardly be the arbiter of accepted usage. As Olmsted is not himself (as far as I know) autistic/has autism, it seems that it might be well for him to leave this matter of semantics and nomenclature to others, and in particular to those who have chosen to say that they are, yes, autistic.

Compassion Deficit Disorder is the title of an August 7th article by writer Judith Warner in the New York Times. Starting with Michael Savage’s over-the-top claims that autism is incorrectly diagnosed in 99% of cases and that it’s just a way to seek “undue sympathy, victim status, and services” for autistic children, Warner writes in the next paragraph about comments by Rick Davis, Senator John McCain’s campaign manager, last week about Barack Obama as

….[playing] “the race card” by noting that Republicans appeared to be trying to suggest to voters that the Democratic candidate “doesn’t look like all those other presidents on those dollar bills.”

There’s a perception—amorphous and not fully acknowledged—out there, Warner writes, that certain kinds of “differences,” of “gender, race, class, status and ethnicity” and also of disability enable some and certain individuals to have advantages, to be given preferential treatment. College admissions are Warner’s particular focus, as she refers to a conversation with her niece, an “incoming senior at a large, suburban high school in the Midwest”:

Her classmates, she said disgustedly, seem to view the college admissions trials as an all out game of war, waged by combatants who are perennially flipping cards of gender, race, class, status and ethnicity, ready to cheat if they don’t like the luck of the draw. Some students, she noted, managed miraculously to discover their non-white ancestry just days before they had to check off their race on admissions forms. These same students had spent their junior years bashing Hillary Clinton for “playing the gender card” (the oft-repeated phrase.) They bewailed the terrible unfairness of a college application system that, they believed, gave unfair advantage to racial minorities and students from economically disadvantaged homes.

Admission into college, and into certain highly selective, elite, Ivy League sort of colleges has become so competitive that students who are, Warner writes, “mostly white, mostly comfortably middle- or upper-middle-class,” feel disadvantaged as college admissions officers brush aside their applications in favor of students who, well, are not. Warner speculates that these students, and, too, the likes of Michael Savage and some campaign managers, all have a sort of “compassion deficit disorder”:

To accuse someone of playing some sort of card — race, gender, or whatever — is to assume they’re trying to take unfair advantage and to assert that they have no genuine right to express a grievance or even to mere self-assertion. That such accusations have flowed so thick and rich in the past year of presidential campaigning and now circulate unquestioned among our next generation of college students, reflects two realities: one is the degree to which the meaning of the historical battle of America’s long-discriminated-against populations has been corrupted, and the other is the degree to which everyone seems to feel that the deck is stacked against them.

The comments following Warner’s article were typically revealing, with numerous remarks about the unfairness of the college admissions process, some about autism being diagnosed and one (#195) in particular about Asperger Syndrome being a diagnosis “overused by parents wanting to have a label that will provide privileges and special services for a child who is bright but what we used to call ‘nerdy,’” and much more.

On first reading all this—especially what could be called the hand-wringing about college—I felt a bit impatient. Charlie’s educational challenges are far beyond worrying whether he won’t get into Yale; we’d have a major party if he read a few words in a book and I don’t mean anything by James Joyce. At this point, Charlie’s most likely not going to college. Jim and I are both college professors and have too good a sense of what Charlie would have to do to get through freshmen year, let alone the rest. Charlie most certainly does not have to attend college (or get himself mainstreamed) to make me feel proud of him; really, it’s beside the point. It’s a cliché, but raising a kid like him gives you mounds of perspective about what’s really important, and being able to wear a “Harvard parent” sweatshirt and put those stickers on the back of the stationwagon matters—-not.

In the interest of “full disclosure,” I will note that there’s a couple of cards I could play, or maybe that someone played for me when I was applying to college over two decades ago. I’m (1) female and (2) Chinese American, third generation, and I made sure to do all the kinds of things students today do to look like Top College Material: played musical instruments, competed in musical competitions, played in youth orchestras, ran cross country, won races, sang in the chorus (though I can’t sing), studied three languages. Et cetera. Further disclosure: I went to an Ivy League college, and then Ivy League graduate school, and then—-two years after I’d gotten my degree—-had a little boy who put me on the path to the hardest educational challenge I’ve ever faced. It’s not been easy, but it’s the truth that raising Charlie and trying to understand him has been the best learning experience I’ve ever had. I never sought admission and at times I’ve been an unwilling student. The cards that I’ve learned to deal have not been “playing” cards as much as flashcards, and Language Master cards to prompt Charlie to talk, and cards fastened to his backpack so he’ll know what his bus and locker numbers are, and the card I slip into his pocket that says “My name is Charlie—I have autism—please call my mom and dad IMMEDIATELY.”

Out of all the comments on Warner’s article, this one stood out to me the most was #44:

I am a Emergency Medical Technician in Jersey City New Jersey and a father of a Autistic child. Most of the children I treat for ashma [sic] are poor. My son, well he is autistic. Neither one of my jobs are “frauds”, please, get real.
Bill Bayer
— Posted by William Bayer

The college where I work is in Jersey City, which is the most ethnically diverse city on the East Coast. My husband Jim and I would love to live in Jersey City but the services for a kid like Charlie aren’t the same as they are in the suburbs, and so that’s where we live. Many of Jersey City’s residents are immigrants; the schools have all the problems of schools in a large, very urban, school district. It’s nice to be able to fret about college admissions. It’s necessary to “get real” and see who really has real needs, and where the compassion needs to be.

What would be the Ritalin equivalent for “CDD,” should one be sought……..

Now we’ve got the New York Times weighing in on radio host Michael Savage’s savage language about “bratty” autistic kids. As About.com notes, Savage is “successfully sucking time, money and energy” from the autism community (and sucking in ratings, I would think). All I can say again is, ’nuff said!

And, we have found the actual parasite.

It seems no wonder that right wing talker Michael Savage’s last name is, well, “Savage” after reading what he said about autism on his radio show. I’ll list the words he uses to refer to autism:

moron, putz, idiot, fool, dummy, a girl, losers, beaten men

More of Savage’s savagery is quoted on Left Brain/Right Brain.

If Savage’s intent was to shock, using such words about autistic children is a no-brainer way to do it and perhaps ratings will spike as rightfully indignant autistic self-advocates and parents of autistic children respond. What troubles me in particular is Savage’s contention that autistic children are just brats behaving badly, and brats parented by laissez-faire “let it be” types of parents, especially in the wake of more than a few stories of autistic children who have been removed from a church, a kindergarten classroom, an airplane, and a restaurant. In each case, the children’s behavior was cited as “dangerous” to “public safety” and just downright “unacceptable.”

Funny but behavior like Savage’s–his unacceptable pronouncements about autism—gets air-time. Perhaps we have found the actual parasite……

Can you imagine having this said to you?

“One family I met took their child to the doctor and the doctor said: ‘If he was a dog you would put him down.’”

As quoted in the February 7 Campbelltown-McArthur Advertiser (Australia).

Kendall Bailey is 19 years old, 6 foot 6, and a champion swimmer headed for the Paralympics in Beijing this September—–but he was almost rendered ineligible by the United States itself. Bailey has cerebral palsy, mental retardation, autism, and Klinefelter’s syndrome, which prevents his body from producing testosterone. Today’s New York Times profiles his dream to swim in the Paralympics and the efforts of his mother, Connie Shaw, to make sure that this happens:

Kendall Bailey is a rare case of a mentally disabled athlete who also has the physical disabilities to qualify him for the Paralympics. But in April, amid confusion about how disabled athletes are classified both before and during the Games, officials who oversee the American team on behalf of the United States Olympic Committee formally asked that Bailey be ruled ineligible.

Mrs. Shaw objected and had the request withdrawn, but was distraught over what United States team officials continued to describe to her as the strong possibility her son could be disqualified after arriving in China. Bailey’s local coach, Don Watkinds, feared the swimmer’s reaction: “Kendall would be uncontrollably enraged, or he might just crawl into a ball in the corner crying,” he said. “And he might never come out.”

The head of U.S. Paralympics, Charlie Huebner, who lodged the request to render Bailey ineligible, said in several interviews this week that he was merely “seeking clarification” of Bailey’s status so that his eligibility would be assessed before Beijing.

But David Grevemberg, who handled the matter for the International Paralympic Committee, said Monday that Bailey’s eligibility for the Paralympics was never a plausible issue, called the United States’ rationale “far-reaching,” and questioned its legitimacy altogether.

The Paralympics are for athletes with physical disabilities and are “often confused with the Special Olympics — a far less competitive event for people with mental disabilities like Down syndrome.” Bailey qualifies for the Paralympics because of his cerebral palsy and physical disabilities, but “after a challenge by another country, he was classified briefly as only intellectually disabled.” And being classified as such would render him ineligible to qualify for the Paralympics.

Happily, Bailey will be able to compete in Beijing. It seems telling that the reasons for disqualifying him were based on how to “classify” him—his athletic ability was not the issue. The New York Times article notes that his intellectual ability a number of times (”he  alternates between being a clumsily communicative fifth-grader and an intractable toddler”) as well as his behavior problems (which are somewhat equated with his autism diagnosis). Do Bailey’s story and that of Oscar Pistorius—the South African runner who is a double amputee and runs using special prosthetic devices—-portend a new kind of Olympics; a new kind of understanding of athletic ability?

We all root for amputees—-until they win medals is the blurb on an article by William Saletan in the May 21st Slate. Saletan writes about Oscar Pistorius, the runner from South Africa who—he is a double amputee—runs on specially built prostheses called “cheetahs” ( j-shapes blades made of carbon fiber). Pistorius recently won a decision to be allowed to compete in the Olympic trials; the International Association of Athletics (IAAF—track’s governing body) had argued that he had an unfair advantage because of his high-tech prosthetic legs. But the Court of Sports Arbitration “deemed that there was not enough evidence to prove that Pistorius’s flexible j-shaped blades, attached below his knees, gave him an advantage.”

It could as readily be argued that Pistorius is at something more than a disadvantage. If I may be blunt, how would your life be different if you did not have one leg, or both? (I have thought about this more than a lot, as a close friend has a prothesis.)

Pistorius’ being allowed to compete in the Olympic Trials is a watershed decision. From the New York Times:

Ann Cody, a seven-time Paralympic medalist for the United States in basketball and track and field who sits on the governing board of the International Paralympic Committee, added: “It sends a message. People with disabilities can see people like them compete, and they’ll connect. They’ll say, ‘Maybe I can do that, too.’ ”

There’s been a lot of discussion here about exclusion after a Minnesota priest filed a restraining order against the parents of 13-year-old Adam Race. What it is about autistic children and adults that results in them being separated, segregated, and set apart?

Again, I’m not sure there’s a definite answer that can be made about Adam Race and St. Joseph’s parish in Minnesota. I remain wary of coming to any definite conclusion about “who’s right” and “who’s wrong” and whether this or that should or should not have been done. In our days with Charlie, helping him to learn and succeed requires a constant dance and a shifting of strategies in a land with hidden quicksand and, too, quagmires.

In the midst of this, reading about the documentary Including Samuel helped to turn my thoughts to inclusion. Samuel has cerebral palsy; he is mainstreamed in the New Hampshire elementary school in the town where he lives. The film is by his father, Dan Habib, who wonders, while Samuel is included now as a child, what happens when he gets older? (And if you haven’t seen the trailer for the film, it’s here.) I wonder the same: Charlie at 11 is not the “cute little guy” who can be tossed in the air or cuddled in a lap; his difference stands out and the response from those who don’t know him is tinged with puzzlement and even fear. One thing to see a disabled toddler so “in need of help”—but what about when the toddler becomes a young, disabled man?

The response from those who spend their days with Charlie, who sit beside him when he moans for some sadness he has no words for, who applaud him when he seeks out another student in his class for a very short coversation—-their response is a sort of pride and joy at how far he’s come. Being autistic didn’t “slow down” Craig Pierson, who is graduating from high school and plans to become a disability lawyer. And Joel Sidney, who is also autistic, is graduating from the University of California at Berkeley with a degree in American Studies and a thesis on bluegrass music (and Am Stud is my husband Jim’s main academic field and the vast percentage of my relatives, including my mother’s father, went to Cal Berkeley—- Sidney’s accomplishment has a special gleam on it for me, and were I to become a lawyer, disability rights is where I’d be headed, like Pierson).

I’m rooting for Oscar Pistorius when he runs in the Olympic trials and in every race—-I’m rooting for him to win.

On leaving the YMCA swimming pool yesterday evening (Charlie jumped in fast and then asked to go on the water slides and I skipped up the steps after him; after his first ride, he was so excited that he turned three somersaults in the water and swam half the length of the pool with powerful strokes), we walked past a group of teenagers, one blondish boy and the rest girls. I was watching the SUVs in the parking lot when the boy said,

“Claire, why don’t you date any normal guys?”

I’m not sure who “Claire” is or what, to teenagers in our town, “normal” means. Charlie, noting no cars hurrying by, had stepped off the sidewalk and I quickly followed as the teenagers said snatches of “well” and “she” and “I wouldn’t,” etc..

Go Claire.

Big Brother contestant Adam Jasinki—who achieved near-universal opprobrium in the autism community for calling autistic children “retards” on the show—-is one of the final two contestants to win the half a million dollar prize. Today’s Philadelphia Inquirer describes him as a “wide-eyed lug with Cherry Hill roots”—-that’s Cherry Hill in South Jersey—-who has “connived his controversial way” into possibly winning. If Jasinski wins, it’s a sad statement about what people will do for money and about people in general: Something a lot, lot less than brotherly love.

In recognition of World Autism Awareness Day on April 2, CNN is planning a report on myths of autism (such as that “thimerosal in vaccines is the main cause for autism”) and ask readers:

• Do you think that there are prevailing myths related to autism? What are they?
• What questions do you need answered?
• Does autism touch your life? Tell us your story here: Autism iReport

Here’s 10 myths about autism on Wrong Planet including “autism is an epidemic” and “most autistics are ‘low-functioning (and for some further debunking of the whole notion of “high vs. low functioning,” see Asperger Square 8’s post entitled I Am Joe’s Functioning Label).

Let the debunking begin!