NEWSBYKRISTINA CHEW

This is my last post here at the autism blog at Change.org. I relate why more towards the end. As this is my final word here, I wanted to focus on a topic that Dora and I think is important to note in writing about autism and disability, the need for critical thinking.

You can now find me at my website kristinachew.com and my new blog, We Go With Him.

Once upon a time I had a very different life.

For one thing, I taught freshman composition at a large Catholic university here in New Jersey (and, briefly, for another prominent institution of higher learning here). I was trained to teach Classics---the culture and history of the ancient Greeks and Romans---and to translate ancient Greek and Latin. I took the composition jobs because I needed to: My husband and I had just packed up and moved back to Jim's native New Jersey from St. Louis, to find the best education for our son Charlie. I first found a 0.333 position teaching Latin at a local public high school and then phoned in to say I wouldn't be able to take it, as I'd gotten a part-time position teaching composition (with benefits).

The students had to write a research essay and this meant I always had to devote one class to "Using Internet Sources." I'd go through the differences between .com, .org, .edu, .info and then show how you can't always judge a website by its "dot whatever." Like many professors, I did not allow students to use Wikipedia as a source on their papers (I still don't). We talked about peer-reviewed journals and used the library's numerous electronic databases. Students ended up with lists of bibliographical sources, URLs, and maybe the printed-out full text of a few articles.

Most of them didn't realize, that their real work began at this point: It's one thing to have a pile of research. It's another thing to read through all of it. And it's yet another to evaluate all that information, to synthesize and analyze and go beyond one's gut reactions and what just "made sense" or "seemed right." Especially when you encounter a source that makes an argument contrary to what you are convinced is right, you must demonstrate that you can, thoughtfully and carefully, evaluate the claims on their own terms, and turn a critical eye on your own views and even your own experience. You must look at the language the writer uses and at how they use the words: Is there rhetoric meant to attract a reader's sympathy? How does the writer use her or his sources---does she or he clearly and accurately represent their theses? Is there irony or obfuscation? You must go and look up the original sources rather than relying only on second- or third-party opinions.

What I often found very difficult to explain to my students was the difference between writing an essay using such critical thinking skills, and more of a response or reaction paper. Very often, students struggled to make arguments based on a careful synthesis of the ideas in their sources. They made arguments that were more akin to opinions and plugged in the sources only if they clearly supported their points.

In many discussions about autism, research, and science, on the Internet and elsewhere, the same sort of thing happens for reasons that are more than understandable.

As of June, I've been blogging about autism every day for four years. I started writing daily accounts of our son Charlie on a blog called My Son Has Autism that became Autismland. I shied away from writing about controversies. But when I started writing Autism Vox and focused more on science and health topics, I quickly found myself blogging about one "hot topic"---vaccines---after another. While I've tried to focus more on issues of education and policy here at Change.org, those "hot topics" have inevitably come up as one follows the latest in the media about autism. There is a lot---an Internet's worth---of information out there. It's become almost too easy to compile lists of sources and links and URLs, to read blog posts and Tweets and articles about all those "hot topics" and to pass them on to support the position one is taking. I know; I do it myself, though I certainly try to evaluate science and other sources for what they say.

And often in the heat of the moment, when we're trying to make a point---that something "caused autism" in a child or that a certain "treatment" is producing miraculous results---we just provide the information without sifting through and analyzing, and reflecting, and discerning, where our emotions are seeping into our views. When you're writing in the ever-changing environment of the Internet and when you're a parent honestly desperate to find something to help your child and to find support for why you're doing the crazy things you're doing, information that says just what you want it to say is hard to resist.

We've had an occasional series of international guest bloggers here from Australia, the Netherlands, Canada, Germany, the United Kingdom, and Brazil. My own understanding about autism and disability took on a focus beyond the US after I went on a trip to Greece with some of my students back in March. While there, I met two mothers: Emma's son Dimitri has Angelman Syndrome and she blogs at The Iron Chicken. Marilena's son is Ρίκος and she blogs at Τι λέει το πρόγραμμα?, which I have been doing my best to follow (with the happy side-effect of helping me to learn Modern Greek). Emma has a post on the Special Olympics, whose World Summer Games will be hosted in Athens in 2011.

Emma notes that she feels "irritated, and occasionally out-right angry" about this and for reasons that I share, and have somewhat expressed in two of my own posts on the Special Olympics. It's not the ideas and the philosophy the Special Olympics that irk but, as Emma cogently writes:

The irritation stems from the knowledge that Greek politicians are going to being doing their photo opportunities and making their postive statements about inclusion and acceptance and the progress that Greece has made etc, etc, etc, when in fact they are doing pretty much.....nothing towards inclusion and acceptance or anything else regarding disability.

And while I'm sure that every country which participates in the Special Olympics also have incidents of discrimination, neglect and abuse towards people with disabilites, I can't help but wonder where Nikos, a boy with Down Syndrome who is currently living in an institution in appalling conditions, will be.

Add to that a comment I read on facebook group Mental Disability - Eimai diaforetikos... e, kai? about children with autism being excuded from the Special Olympics in Kastoria because "the children with autism are particularly aggressive and have the tendency to be distant", I'm left asking myself whether Greece is ready to host the Special Olympics?

I hope...I hope many things. I hope the Special Olympics will help to dispell some of the myths and stigma which still surround intellectual disability, I hope that people will be encouraged to take more of an interest in what is going on around them, to people in the their own country. And of course I hope that the athletes participating in the Special Olympics have a great time.

I hope my feelings of confusion and irritation are misplaced.

I'm completely with Emma here. Charlie loves being active and excels at bike-riding and swimming, and we've been hopeful about Charlie participating in the Special Olympics. The reality of having him be on a team and/or participate in activities has been much more of a challenge in itself. I remain hopeful that Charlie might one day participate but I also want to make sure that has indeed has a "great time" and that the focus isn't on the competition, but his participating.

Like Emma, I hope indeed that my own "feelings of confusion and irritation are misplaced."

That's how Jim and I have been characterizing our summer. At first I saw Camp Charlie as a camp with one camper (Charlie) and two counselors (Jim and me), hurrying around in a somewhat harried manner. As July comes to an end, I've felt that it's become a camp with three campers on a full schedule of:

(1) Morning: Academic time (Charlie goes to Extended School Year (ESY), Jim and I sit in front of our respective computers and get as much done as we can).
(2) Afternoon: Recreation (a long bike ride, sometimes a swim + gym time); quiet time (in which I try to sneak in typing practice and other "edutainment" between video-watching on the computer); out-in-the-community time (often visiting various stores); canoeing (Jim's latest addition to his and Charlie's roster of outdoor pursuits)
(3) Evening activities: Shorter bike ride and/or basketball

Back in June, I was anticipating that this was going to be a tough summer. Charlie's school year ended with a stack of incident reports. He'd already been having a difficult and difficult-er time as the school year progressed and Jim and I were called into a district-requested IEP meeting in June. That meeting was cancelled by the district and rescheduled for July at which time we found ourselves back on the road to find Charlie a school.

We've been making the rounds visiting schools, reviewing Charlie's records in the school district offices, setting up appointments, having Charlie observed.

Many of you have been on this road before and your support suggestions have been more than welcomed. Just knowing you're all out there has made a tremendous difference: I'm heartened not only when I read your comments here. When we're at the table talking to the school district and the tape recorder is running, it means a great deal to know that you're not alone, that your child is one among many children for whom our educational system is not working. And that means, we need to change the system, change what is going on in the classroom and in the schools, and figure out how to create an appropriate education and accommodations for students with disabilities.

(As many people have pointed out to me, I should watch what I'm writing here about my son's school situation; school districts, consultants hired by the school districts, and others can of course read this. So I'll leave it at that.)

But back to Camp Charlie.

Now that breast milk is being pointed to as a cause of autism based on research on rats by University of California neuroscience professor Michael Merzenich (a 2007 study found developmental abnormalities in rat pups who were nursed by mothers who had been exposed to certain PCBs during pregnancy and in the early weeks after giving birth; more discussion at About.com)----and me having noted a very wide assortment of purported causes of autism (TV, ultrasounds) in my past four years of daily blogging---one wants to throw down the proverbial gauntlet (if not throw up one's hands) and say what hasn't been suggested as a cause for autism?

You are welcome to note potential future candidates for the title of "autism cause of the moment" in the comments.

While carefully following the latest on the New Jersey political front last week, I also had an eye westward on the budget brouhaha in my native state, California. Included in the California budget deal are changes in the California High School Exit Exam policy that could make a big difference for thousands of students with disabilities who, in previous years, have been denied a high school diploma: Under the deal, the exit exam graduation requirement for special education students will be waived, so that special education students in the class of 2009 and, potentially, afterwards would not have to pass the test to graduate. Education officials are currently trying to figure out what to do for the many, many (over 10,000) students with disabilities from the classes of 2008 and 2009 who passed all their graduation requirements except for the exit exam.

As noted in the July 28th SFGate:

The exit exam "has been an unmitigated disaster for thousands of children with disabilities," said Sid Wolinsky, Disability Rights Advocates' director of litigation. "They've earned (a diploma) by every possible measure except this one-size-fits-all standardized exam."

Wolinsky's organization says 16,000 disabled students fail to pass the exit exam each year. Many of them met all other requirements for graduation.

Susan Schneider's autistic son Michael is one of them.

The Vacaville teenager, a high school senior last year, never passed the exit exam and received a certificate of completion in June.

He satisfied every other graduation requirement, but despite multiple tries, he couldn't pass either the math or English portions of the exit exam. He simply couldn't demonstrate his knowledge that way, his mother said.

Michael is going back to school in the fall; he can do so until he is 22, unless, of course, he is able to graduate.

The changes in the exit exam in California recall a small controversy that occurred in June in Vermont, when 18-year-old Todd Geraci was at first not going to be allowed to graduate from the People's Academy in Morrisville. Geraci had not yet completed work included in his individual education program, including social and other goals; Julie Sullivan, Geraci's mother, filed and won a court injunction that required the school to allow him to graduate with his classmates.

A diploma should be something that one earns because one has completed certain requirements. One concern that might be raised about the new changes to the exit exam is that a(n unintentional) message is being sent to special ed students that requirements are being "watered down" for them. On the other hand, being able to graduate with one's fellow classmates and move on in a group, in a community: These are other, perhaps less tangible aspects of a high school diploma that nonetheless mean a lot.

At the moment, I've just been hoping that Charlie can hang on and get through middle school, in one piece (more or less). If his academics continue at the rate they are now (v-e-e-e-r-r-y slow and gradual), Charlie would not be ready to take something like an exit exam, certainly not in subjects like English and Math. When he is ready to graduate according to his age, I think he should receive recognition for making it through all those years, for hanging in there, in a school and setting that's not the most appropriate for his learning needs---certainly, there are challenges and obstacles he's faced and learned to work through that many of us can only imagine.

Jonathan King died almost 5 years ago, on November 15, 2004. He was 13 years old and this past July 13th would have been his 18th birthday.

Jonathan died at school. He hung himself with a rope that teachers had given him to hold up his pants as he habitually didn't wear a belt. The July 27th Atlanta Journal-Constitution has a long article about Jonathan and about the lack of regulation of Georgia's "psychoeducational" schools. There are 24 such facilities in Georgia and some 5,600 students in them who are "emotionally disturbed, autistic or so brain-injured that regular schools can’t control their behavior."

Jonathan was diagnosed with ADHD in kindergarden and "began a regimen of prescription medications." By sixth grade, the school district decided to place him at the Alpine School due to his being "disruptive."

Jonathan was in eighth grade in the fall of 2004. He never complained about school, his parents say, never told them anything other than he had occasionally gone to “time out.”

The Kings’ lawyers, though, eventually learned the extent of Jonathan’s understatement.

A log book for Alpine’s seclusion room showed Jonathan was confined part or all of 15 school days between August and November, sometimes twice in one day. Over two consecutive days in October, Jonathan spent 15 hours in seclusion. The first day, Jonathan ripped the hem from his shirt and wrapped it around his neck in a suicidal gesture. The next day, the log says, he was “threatening to kill himself.”

Rather than using the seclusion room only as a last resort to get the boy under control, the log suggests it became a place where teachers sometimes placed Jonathan for minor infractions. On Oct. 26, 2004, for instance, Jonathan was “cussing, argumentative and disruptive during testing; demanding water bottle be filled; swearing; [and refusing] to follow instructions,” the log says. He spent seven hours, 10 minutes in the seclusion room that day. Ten days later, on Nov. 5, Jonathan was locked up for five hours, 50 minutes after he “refused to accept feedback.”

Alpine never told Jonathan’s parents about any of the seclusions. It didn’t have to. In court papers, Alpine contends the state’s lack of regulation gave it implicit authority to use seclusion as it saw fit.

The "lack of regulation" meant that the school could just use such practices "as it saw fit," without spelling out under what circumstances Jonathan would be placed in seclusion, and without indicating an educational plan so that he would not have to be in such a place?

Jonathan's case sounds too many familiar notes to me. My son has not been placed in a timeout room, but he has been restrained in more than one New Jersey public district. The kind of "psychoeducational" facility that Jonathan died in has been suggested for my son. Certainly many things about the staffing and the training that staff receive at the schools here differs, but the use of restraints and timeout rooms are not at all unheard of.

Jonathan could talk more than my own son, and yet he was still unable to communicate what was really going on to his parents. Besides medication, what educational and behavioral methods were used to help him in the classroom? What had not happened in his education? And what kind of a society are we that allows children with disabilities to be placed in what are in essence cells with bars on the window and locks the door?

A study by researchers at the Mayo Clinic and published in the most recent edition of Pediatrics has found that autistic children are no more likely to have gastrointestinal problems than children who are not on the spectrum. The medical records of 100 autistic children over an 18-year period were compared to those of more than 200 children as controls. 77 percent of the autistic children had common GI problems (constipation, diarrhea, abdominal bloating, reflux, vomiting); 72 percent of the control group had these. Researchers did find that the autistic children were more likely to have constipation (34 percent to 17.6 percent) and to be picky eaters (24.5 percent to 16 percent). Only one autistic child had Crohn's disease and none had celiac disease.

The study suggests that "special diets"---in particular the gluten-free casein-free diet, which many families have placed their autistic children---are not warranted as treatments for autism. As noted in the July 27th New York Times, placing an autistic child on a restrictive child should only be done "after having appropriate diagnostic tests done."

I'm one of many parents who have placed their child on "the diet." In the early days, we swore by it and policed every drop of food that went into Charlie's mouth and into our house --- we had many bagel-free, pizza-free years as a result. (Jim and I agreed, if we were not letting Charlie eat something, we would not eat the "forbidden" food in his presence---fair's fair.) I thought I saw changes in Charlie while on his food regimen, which overlapped with him starting an intense ABA home program.

Or was it that, I saw the changes that I was so wanting to see?

As Charlie got older, the diet became restrictive in more and more ways, namely, our vigilance about "NO cupcakes, not even a bite" at school parties for other students started to restrict Charlie socially. We gradually started him eating wheat; no big deal. Milk and other dairy products did seem to disagree with Charlie so we've still kept him off of those.

When Charlie was just diagnosed and everything was chaos and confusion, "doing the diet" made us feel that we were doing something, that we were somehow contributing to helping Charlie as we waited to get evaluations done, searched for therapists, set up a home program. Whatever its actual merits as a treatment, putting on Charlie on the diet did have the positive side-effect of getting him to have to try new foods (when we started the diet, he mostly ate carbohydrates; some days, he'd only eat chocolate chip cookies). Our search for "ok foods" led us to introduce Charlie to many ethnic restaurants and to this day his favorites include Vietnamese summer rolls and mien and sushi.

Regarding the researchers' findings of more constipation and picky eating, I found some of the commentary in the New York Times article of interest:

Dr. [Samar] Ibrahim suggested that the loss of appetite and difficulty gaining weight in autistic children may be related to the use of stimulant medications, which are often prescribed for the condition, and that the constipation may be due to children not consuming enough fiber or drinking enough water.

Well, maybe, but not every child takes stimulant medications. There have been times when Charlie has limited himself to very few foods and, therefore, eaten very little; we've learned that his food choices are sometimes rooted in his sensory issues. As for constipation---some children may simply not want or be able to use just any bathroom (i.e., they may insist only on using a bathroom at home, versus one at school or in a store or restaurant), and this insistence can lead to some interesting scenarios. One thing I've learned time and again in trying to figure out why something or other is going on with Charlie that the most obvious answer isn't always the one that turns out to be right.

10-year-Ben Kredich, who's on the spectrum, swims the 25-yard freestyle in the Greater Knoxville Area Interclub Swimming Association City Championship Meet, the July 26thGo Vols Extra reports. And 18-year-old Robbie Phillips, who's also on the spectrum, competed in yesterday's ninth annual Nautica New York City Triathlon, as noted the July 26th Ocala.com.

My first thought: Charlie's two-thirds ready for a triathlon. He can bike 12 miles at least and, if needed, he could swim as long as he had to. He just has to learn to run like Robbie and Alex (Charlie can certainly run, but not in any organized or competitive setting).

Second thought is, while avidly cheering on Ben and Robbie for their accomplishments, I'm mindful of a recent post by Dora: Is the only reason their achievements were reported because they're on the spectrum and the news stories therefore have that heartwarming edge? "Why should it come as a surprise that autistic kids, like any other kids, benefit hugely from doing stuff they like and are good at?," as Dora wrote; why should it be a surprise that autistic kids (and individuals on the spectrum) can achieve in athletic events, and otherwise?

In thinking about what my son might be doing and even where he might be living, I've been reading some about farms and intentional communities. One concern that's come up about such living situations, and about "intentional communities" in particular, is whether or not they're really segregated institution-like places, where individuals with disabilities live apart from the greater community.

The July 5th New York Times Magazine looks at farms in the city that are quite beyond the proverbial plot of vegetables. Street Farmer profiles Will Allen and his Growing Power farm in Milwaukee which has"14 greenhouses crammed onto two acres in a working-class neighborhood on Milwaukee’s northwest side, less than half a mile from the city’s largest public-housing project. A second article, Home Sweet (Urban) Homestead, looks at farming that's going on in "a gritty block in Oakland, Calif. — the kind of neighborhood that quickens your step even on a bright Sunday afternoon," in the "urban homestead" of Anya Fernald: "In Oakland, where backyard menageries and D.I.Y. charcuterie are the new garage band, the term 'urban homesteading' doesn’t need an explanation. 'It fits into the Oakland sort of self-defined vibe or aesthetic of doing things from scratch and being kind of hard-core,'" as Fernald is quoted.

Both articles are specifically about the numerous benefits---for health, jobs, self-sufficiency, more---of such urban farms. Reading about Fernald's "homestead" in Oakland, I'm reminded very much of the "urban farm" my grandmother, Ngin-ngin, kept going on the porch of her second-story duplex on Madison Avenue and in the yard below. When my father was growing up, they grew vegetables and kept chickens (all of whom wandered away one day when someone left the gate open; I've never been able to get the image of a line of chickens wandering the streets of Oakland by the Oakland Museum and the Alameda County Courthouse out of my head). Ngin-Ngin made everything, from endless types and amounts of food (I was going to write "Chinese food," but that seems somewhat repetitive in this case) to moonshine to clothes, blankets, you name it. (There's also a fireworks angle, but I won't get into that now; it is the fifth of July.) If she didn't get vegetables from the yard ("urban homestead"), they came from Chinatown's markets and, of course, from Tai Wah, which Yeh Yeh, my grandfather, owned.

Suburban New Jersey---I mean, this is the Garden State---offers a few more places to plant some seeds and let a garden grow. As I've learned from making brownies with Charlie, the process is the thing, and why not show him where food (well, some types of food) come from?

Charlie is definitely curious about food preparation.

What lies ahead for Sarah Palin following her resignation from the governorship of Alaska?

"Civil rights leader for people with intellectual disabilities," as Special Olympics president Tim Shriver suggests in a July 23rd Washington Post op-ed. This, he says, would be the "perfect job" for Sarah Palin, the mother of a young child, Trig, who has Down Syndrome; these are her "powerful credentials." Writes Shriver:

As a parent, imagine the attention she could help draw to challenges children with Down Syndrome face in early childhood. There are far too few early childhood centers for children with special needs, far too few day-care options, far too few preschools that accept children with Down Syndrome. Palin's name could do a lot for the cause of early childhood service improvements.

Imagine the impact she would have if she testified before Congress about the health disparities facing children with Down Syndrome. Good medical care is difficult to get and frequently substandard. I remember one medical professional telling me that care for children with special needs was usually "quick and dirty. Get them in and get them out." Palin could expose the dirty secret that people with special needs are among the most discriminated against populations in the health care world.

Imagine Palin leading efforts to awaken her community and her country to the gifts of people with Down Syndrome. Today, when parents learn that they are carrying a child with Down Syndrome, the vast majority choose to terminate (some estimates are as high as 90%). This doesn't have to be about the legality of abortion but rather about informing prospective parents that people with Down Syndrome can lead happy and productive lives. That's a message that both the conservative Sam Brownback and the liberal Ted Kennedy have endorsed. I bet they'd both welcome Palin as a messenger.

Noting that some will says that Palin is "controversial to be effective in these roles," Shriver suggests that she could be "united," and suggests that she join with President Obama's Friday announcement to make the US a signatory to the 2006 United Nations Convention on the Rights of Persons with Disabilities: "Couldn't Palin join with the president in helping our nation renew its global leadership for full inclusion of people with disabilities?"

During last year's Presidential campaign, Palin's being the mother of a child with Down Syndrome was regularly noted. Examination of Palin's statements regarding disability suggest that, before taking a national (and, as Shriver seems to suggest, even an international) role in advocacy for individuals with disabilities, some study of disability in a broader context and of disabilities rights more generally would be helpful. In September of 2008 Palin spoke about curing "dreadful diseases" following a reference to "special needs." Some more extensive comments from an October 2008 interview refer to Palin's views on providing "opportunities to special needs children and special needs adults also."

I was fortunate to have been interviewed by Newsweek about John McCain's pledge to help families with special needs children. In response to reporter Claudia Kalb's question "Isn't Sarah Palin a good role model for special-needs families across the country?" I said:

I appreciate the fact that the choice of Palin brought working mothers, and especially working mothers of special-needs children, into the national discussion. And as a mother, I hesitate to criticize or judge another mother on her parenting style. But I'm concerned about the reality [she would face in] taking care of a special-needs child.

And, while one, again, prefers to refrain from casting any judgments on other parents, and especially parents of children with disabilities, I'm not sure how Palin might be able to balance the realities of day-to-day care for a child with a disability while throwing herself, as has been speculated, into preparing for a future presidential campaign. If she can, more power to her, and many will be curious about how she manages it, and what she will be "advocating" for.