So for all the heightened awareness about autism, and despite the fact that most people I meet say “I know someone who has an autistic child/brother/child of co-worker/etc.,” numerous myths about autism persist.

And, ok, I’ll admit it: One can feel a certain amount of satisfaction in debunking one of those, such as the claim that autistic persons lack empathy.

Last Sunday, Jim and Charlie went on one of their long, long, long bike rides. They go here and there and onto certain favorite streets. Charlie often rides ahead. He’s started going really really fast and Jim zooms after to keep up. Charlie’s learned about going left and right, about stopping at stop signs, about watching out for cars, all while riding his bike. (He does have to be careful around the rear view mirrors of parked cars—he crashed against one once and fell off his bike.) (Falling itself being, I guess you could say, part of the whole kid-bike experience.) Sometimes they stop for sodas and snacks and sit where they can see the bikes.

Sunday was warm, autumn colors lining the roads, and Jim told me how broadly Charlie was beaming as they peddled through a park. They were coming out on a path and came upon a father and his son, who was about four years old and on a little bike with training wheels. As Jim recounted to me, the father was saying things like this:

“You’re not doing it right. You don’t remember everything I showed you yesterday. You’re not getting it right.”

Charlie rode by and, just as he did, the other little boy burst out crying.

The glow immediately left Charlie’s face. He was nervous and weepy, Jim told me; he was very agitated for another whole mile.

He’d heard another child crying and he felt bad. He felt with another child, in sympathy, which is from the ancient Greek word sym for “(together) with” and pathos, “feel,” and also a root word in “empathy.”

Which isn’t lacking in our household.

This post references an article from back in May in the Herald Tribune, but the topic is as timely as ever: Have you ever visited your child’s classroom and noted that the aide your child most liked is long gone, and that there’s at least one new aide, if not two?

The Herald Tribune notes that there have been at least four substitute teachers for students in a special ed class, after their teacher was arrested on allegations of child abused in February. The article comments on the high turnover rate of special education teachers:

The turnover rate among special-needs teachers is one of the highest in the profession, with Florida losing about 14 percent of the educators in this area each year.

The high stress of the job, along with what teachers say is limited support and resources, drives people out of these classrooms.

The annual attrition rate for special ed teachers is estimated to be 8% to 10%, according to the Education Resources Information Center. Over the years, aides have appeared in Charlie’s classroom one day, been gone the next or suddenly and the teacher has been as in the dark as me about why. None of the aides who had been with Charlie and his classmates for the past year (and even two years) went with them to middle school; all the boys have adapted fine to new staff, but it wasn’t easy as first.

Coupled with an autistic child’s need for consistency and routine, a high teacher/aide turnover rate seems to be the last thing needed—-and instead it’s more of a commonplace

After a priest filed a restraining order against the parents of 13-year-old Adam Race back in May, there was a lot of (often very heated) discussion about the exclusion and inclusion of autistic individuals in public spaces. The August 22nd Morning News reports on The Point at Bella Vista, a church meant for families with a relative who has special needs. Ginny Thornburgh, director of the American Association of People with Disabilities Interfaith Initiative in Washington, notes that

“the trend is to acknowledge the gifts and challenges children and adults with disabilities bring to the congregation…….. All people of all faiths have a right to be honored and welcomed - a right to worship, study, serve and learn.”

Hope that this is a trend that will certainly continue.

Go here to read about the Interfaith Disability Connection.

This Associated Press story about autistic children and disruptive behavior has been making the rounds of news outlets and websites—-Jen Miller of Tacoma, whose daughter is autistic, writes this in the News Tribune:

….it’s funny how easy it is for some to complain when they haven’t walked a day in an autistic parent’s shoes.

Miller refers to a number of instances of autistic children whose “disruptive behavior” has been the subject of more than a little public discussion and judgment and reminds us, you just never know what might be going on.

In the ocean this morning with Charlie, I noted a boy about his age looking more than a few times in our direction. Charlie’s a super swimmer, and clearly comfortable in the water, and still has to have someone out there with him. This morning it was me. The waves were perfect—big but soft and just a bit cold—and Charlie was vocalizing his excitement, though not in words. After the other boy had looked in out direction a few times, I smiled and said, “Charlie’s autistic.”

“Yes, my friend has a brother who has that,” said the boy. I asked how old he was; the boy said he was ten, same as himself, and that “all he does is play video games and beat people up.”

“My son doesn’t do either of those,” I said, quickly, and glancing around to see where Charlie was swimming off to. “I mean, a lot of kids like to play video games, but not the beating people up.”

The boy was in earnest and added, “He’s mainstreamed, too. He’s in fourth grade. They had to hold him back a year.”

At that point Charlie was clearly swimming beyond the lifeguard’s orange flag and I hurried off. The boy and another boy, both on boogie boards, floated several times near us and in and out wherever Charlie was going.

The beach is big and the waves themselves are loud. I’d say it’s a place where there’s room for everyone, “whatever” they are (on the first day, we realized that another family on the beach had an autistic son, an adult). There’s still rules—those orange flags to swim between, and not swimming near the jetties or near a fishing pole (Charlie attempted to do both this morning). One reason we like to vacation at the beach is because it is a place where Charlie can pretty much do what he likes a lot, get in a lot of exercise, not have to worry about waiting in lines for rides as we would at an amusement park. Being able to rent a house rather than a hotel room means there’s plenty of room for him to run around and stomp (and we have our own washing machine…….). Souvenir shopping and going to arcades aren’t of interest to Charlie, and the ocean and sand are pretty much the main attraction.

So, we try to seek out a place where Charlie can be himself, in public spaces too, and get ready to play the parent activist at certain moments when a boy taller than his mother who speaks partially in sounds rather than words attracts attention and can be considered disruptive. The August 13th Associated Press has an article about the disruptive behavior of autistic children striking a furor; some cases of autistic children—Adam Race; Alex Barton—being excluded are noted. Is there a limit to how much “understanding can be gained in grocery stores, churches or other public places”? If parents go out of their way to make accommodations and preparations when taking a special needs kid out in public, maybe these are first attempts to help a child learn to be in public places, and to seek the beginnings of understanding.

Maybe—at least they’re ways to get a conversation about autism going.

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……

A Georgia mother and her daughters were kicked out of a Jackson restaurant because one daughter, 4-year-old Alyssa, who is autistic, was crying. Another customer—-Jackson Police Chief Dennis Rushton, it turned out—-said that her crying was “‘beginning to make [his] head hurt.’”

Excluded, again.

Daycare. And, afterschool care.

The very idea of these have long seemed a luxury to me. There’s basically five people on this planet who’ve provided these for Charlie: My parents, our speech therapist who we’ve known since she was in college, Jim, and me. As my parents live in California (they’re retired and can visit a couple of times a year, for extended periods), and the speech therapist has a full-time job, does Early Intervention, and much else, basically our daycare/afterschool care team has consisted of a total of two people: Jim and me.

This is not for lack of trying to have Charlie in such programs. In fact, it was because Charlie was in daycare (an on-site facility at the St. Paul university I was then teaching at) that his developmental delays were noted when he was a year and a couple months old, and that he was diagnosed with autism just as he was turning 2 years old. Seeing Charlie all day long among other children his age made it very clear: He’s different.

Jim had a sabbatical when Charlie was 2-3 years old and was the parent who was home for the much of the time that Charlie did his first year of intensive ABA. I took a leave from my job the next year (and ended up eventually resigning from the job). After we moved back to New Jersey, we tried Charlie attending a daycare center for a few months; it was a friendly, very lowkey kind of place, everything worn and a bit sticky. Charlie did ok for a few weeks but mostly ended up walking back and forth in a corner of the playground kicking at the dirt and we took him out, rearranged our schedules, got used to rushing home. A few years later, a neighbor met Charlie twice a week at the bus; this again went sort of well amid some really harried moments, one involving the hard surface of our porch.

The one local after-school program for special needs kids that I could find was in a sort of warehouse space, with a bare concrete floor, an aging tv set, and some tables and old couches. The staff were pleasant, but were usually talking to each other when I picked up Charlie, running back and forth in the huge space; all the other kids were sitting quietly at the tables. After a hair-raising phone call from the bus driver when Charlie refused to get off the bus to go into the center (two staff members were unable to get him off; our speech therapist friend was able to get to the center before me and took him home in her own car), we knew that was the end of Charlie at that center.

At this point, for Charlie to be in an after-school program with kids his age, we’d have to find a center that would take a child who needs (at the age of 11) constant 1:1 care, find and hire our own aide. Working out schedules (and driving home really fast) seems to be the better, or the pretty much workable, option. I know we’re hardly alone among parents in struggling to find decent, affordable daycare. Unlike other children, Charlie will always need someone to meet his bus and supervise him—this is one area that he can only so independent in.

An article in the July 5th New York Times about Google’s “fumble” in providing daycare to its employees—-for one thing, a plan to raise the price from around $33,000 to $57,000—reiterated how important, and emotional, an issue care for one’s children can be. Much of the concerns of the Google parents concerning daycare are far from anything I’ve had to worry about for Charlie (such as making sure the “hot kiddie philosophy of the moment,” Reggio Emilia, is used) but talk about waiting lists with hundreds of names in front of your child’s rings a too familiar bell. And the stress and strain of parents wanting to give their kids that good foundation is more than familiar to me,  a long-time veteran of Early Intervention in manifold shapes and therapies.

I’m more than glad I’ve been able to spend so much time with Charlie day in and day out; I’ve been able to teach him lots of things and I’ve learned a lot in the effort. He’s my trusty compantion, my good friend. But it seems something more than funny that something so essential (at least to this working mother)—-a safe and friendly place to leave a child so you can work (to pay for the daycare, for one thing)—is talked about as a “perk” and even a “luxury.”