Change.org's Autism Blog

Change.org Is Recruiting Disabilities Rights Bloggers

Mike Smith — 2009-09-17T08:00:00-07:00

Want to blog on an issue you're passionate about for an audience of over a million activists and nonprofit leaders? Change.org is expanding our team of paid freelance bloggers to help broaden our coverage of the most important causes of our time, including Disabilities Rights, and we're looking for bloggers for all disabilities.

Visit http://www.change.org/bloggers for more information.

AR = DR = HR and Onwards into the Future!

Dora Raymaker — 2009-07-31T12:46:00-07:00

Autistic Rights are Disability Rights are Human Rights. That was the topic of the primer I wrote when this blog started back in January.

While autism makes us different, autistic rights is really about those things we all need, autistic or not, disabled or not, minority or not: food and shelter, respect and love, and empowerment to live our own lives in freedom, happiness, and health.

This is the point I've hoped to make with each post, the perspective I've wished to share. The change I've wanted to initiate.

It is deeply satisfying then that this blog itself will be changing to better reflect the AR = DR = HR equation, as autism-specific blogging merges into broader Disability Rights blogging at change.org in the future. This is As It Should Be.

As far as my own future, I'll be doing some public blogging still (though with much, much, MUCH less frequency and after a short break) on ASAN's change.org blog (and who knows where else). I'll also be starting a new appointment with the Oregon Commission on Autism Spectrum Disorder (remember that?)--my first real experience with public service and something that would have been literally unimaginable to myself not so long ago. I'll be continuing my advocacy work with ASAN and SAAL. And primarily I'll be working on community based research with AASPIRE, which, believe it or not, has been my "day job" all along. Somewhere in all this, here's hoping I'll facilitate some change in the overall direction of better civil rights and quality of life.

Thanks everyone for your time, your comments, and your insights. Keep pushing--keep making the world a better place for us all.

Ave atque Vale, Change.org

Kristina Chew — 2009-07-31T00:33:00-07:00

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.

I know. Like many parents, I once tried to recover my son from autism, as I wrote in one my first posts here on Change.org. It's not easy to apply your critical thinking skills in the press of life, when you've just dragged yourself and your child back into the house after snatching him out of the path of a car in a McDonalds parking lot and been upbraided by random strangers who were in no mood to hear your explanation of how you don't know why your son started knocking his head at the top of the tube slide in the McPlayPlace because he can't talk and it wasn't a moment to pull out the PECS book.

Charlie doesn't do that sort of thing anymore (though we do go to McDonalds when he asks for it and, occasionally, to a McPlayPlace). He can somewhat tell us, in various ways (not always words) what's bothering him, and Jim and I have learned to understand his communications much better by spending so much time with him. It's from all that time, from watching Charlie, that we've learned what treatments, therapies, and educational/teaching methods seem to work best for him.

Parenting a child like Charlie means that you have to use your critical thinking skills. As my friend Shannon writes, you have to be able to identify and avoid autism cults. You've got to get your strategy together to advocate for your child at IEP meetings and get the school district to do the right thing for your child. You've go to be able to analyze, in a split second, why your child just got so upset in a place that he likes: Hormones? Stomachache? Too much noise? Bad day at school? Something we parents (with all good intentions) said or did?

I often say, figuring out how to take care of Charlie has been the biggest challenge I've ever faced, more than any exam I ever had to take in college or graduate school. Writing about this journey of Jim's and my life with Charlie has been the bread and butter of my blogging; it's certainly the basis for my very-much-in-progress-book about Charlie.

This is my last post on the autism blog at Change.org. In time this blog will morph into one about disability and disability rights, and I'm very pleased at this future transformation. As Charlie has gotten older, more and more of the issues that affect him---issues of employment, housing, transportation, support staff---overlap with disability issues more generally. Dora's and my posts will remain on Change.org and be integrated in the new blog. I think the almost eight months of blogging that we've done here comprise a nice oeuvre, a small archive of articles about key issues pertaining to autism and disability, from the perspectives of a self-advocate and of a parent. I have been particularly happy about the blog when Dora and I ended up posting on the same article (sometimes on the same day), but with our different perspectives.

I will still be blogging over at my website, kristinachew.com. My new blog is called We Go With Him, and I've included sections on my site with links to my writing on various topics here and on Autism Vox, as well as a section about teaching Charlie. I'm going to let We Go With Him evolve as I write it. Certainly some posts will chronicle our continue efforts to find a school for Charlie. While still following all those "hot topics" about autism and occasionally commenting on them (I just can't resist), I'll most likely be focusing on writing about being on the road with Charlie.

Thank you so very much for your readership, for letting us know what you think and for your support, which has meant a great deal. Back in December when I started writing this blog, Charlie was struggling mightily and Jim and I found ourselves facing some hard and terrible questions. Things have been looking up on the docks and Charlie has been well, very well, and we've been having a wonderful summer.

Life on the long road with Charlie is not easy, most of all for him. Life with Charlie is always very, very good for Jim and me because we have each other, because Charlie is with us, and because we're one tight team of three.

From our post on the autismfront to yours, we'll be seeing you.

Sweet Sibling Short

Dora Raymaker — 2009-07-30T16:00:00-07:00

The Aspergers Association of New England (AANE) has a documentary short posted on their site called My Brother Tom. The film was made by Kaz Gamble about, well, his brother Tom (strange, I know). The film is also about acceptance, understanding, the importance of diagnosis, and insight both into a healthy sibling point of view and into issues specific to that generation of individuals who were not diagnosed until well into adulthood. Most importantly though, it's a sweet, fun film to watch.

Here's the trailer from YouTube.

You can view the full film on AANE's site.

Special Olympics in Greece 2011

Kristina Chew — 2009-07-30T14:15:00-07:00

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."

Leverage

Dora Raymaker — 2009-07-30T10:51:00-07:00

There is a concept in the systems field called "leverage." Leverage is the part of a system where a small change has the largest potential to impact the whole. As a simple example, if a person treats the symptoms of an infection with pain killers, the state of the infection doesn't really change much; there is little change in the whole system. However, if a person treats an infection with antibiotics, not only does the state of the infection change dramatically, but the symptoms of the infection go away as well; there is large change in the whole system. The leverage in that example is in the infection, not in the symptoms of the infection. Leverage points are rarely in the place that seems most obvious.

Part of the purpose of this change.org site is to create change. Change in individual perspectives and paradigm. Change toward less assumptions, toward more respect, toward a better understanding. Change on a public, universal level in policy that supports respect, opportunity, equality, and quality of life. Discussion, action, the social-sharing-medium of the Internet.

But I do wonder sometimes--where, really, is the leverage? If we want public attitudes toward autism to shift away from medical-deficit models and toward social-strength models, if we want public perception of autism issues to be as human rights issues, then where is the greatest point of impact? The media? The government? Each other?

How much leverage is there in blog posts? In the discussion that comes from blog posts?

How much leverage in emailing a legislator, or a public figure?

How much leverage is there in one single person perceiving old things in new ways, and telling all their friends? And starting a blog of their own?

How much leverage in the things that exist outside of this blog, outside of the blogosphere, outside of the Internet?

How many impact points exist beyond our interactions here, ways to get involved, ways to speak out, ways to demonstrate? In passing out autistic-positive flyers at events that would disparage us, in being visible, in demanding to be regarded? In attending town hall meetings, in getting involved in local policy making, in not letting policy makers get away with ignoring us, autistic people, in policy decisions about us, that directly affect us? In getting involved in research that is good for us rather than bad for us, in working with cross-disability self-advocacy groups and building on the ground work that came before us, in thinking critically about what comes through the media? In simply standing up to an abuser and refusing to take it, in any way, even just once?

How many leverage points are there?

Social systems are huge and slow, they have a lot of inertia, and take a long time to change. But if we find the right leverage points and push, what can we accomplish? How much have we accomplished already?

Camp Charlie

Kristina Chew — 2009-07-30T00:39:00-07:00

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.

After making his way through some rough waters at the end of the school year, Charlie has been well. May and June were made further interesting due to his neurologist changing his medication. Charlie has been taking Risperdal for the past four years, since he was eight years old. Throughout June, we slowly weaned him off it and started some new medications. I have been feeling quite dubious at how well any of these medications might be helping Charlie after seeing him have so much trouble while on Risperdal. But, so far, the meds seem to helping him and he simply seems much more peaceful easy-feeling, as Jim likes to put it.

On a side note: Charlie's Risperdal dosage has of course increased as he has grown. When he first started the medicine, he had a significant increase in his appetite and put on the pounds. People often throw up their hands and say "what can you, it's a side effect"; we did our best to provide Charlie with healthy choices (argh, I sound like a nutritionist!) and kept him active. Over time, the increase in appetite seemed to wane, but it would come back as the dosages increased and by this past spring, I often found Charlie looking down at his expanding middle, very perplexed at what was going on. With the change in meds, his appetite has leveled off, though it's still quite in abundance (he did just grow another inch and has been wearing a pair of Jim's size 10 1/2 shoes). I can't say for sure, but being more in a fit and fighting trim has made Charlie happier; certainly, he's gotten more agile than ever.

Which of course may also have something to do with all that bike riding. Certainly the other members of Camp Charlie have been definitely getting into shape this summer!

Mixed Reviews on ADA-Day Speech

Dora Raymaker — 2009-07-29T16:00:00-07:00

A full written transcript of Obama's ADA B-Day and CRPD-signing speech is now available for those of us (this includes me) who start to hear "blah blah blah" after about the first 5 minutes (or less).

While some coverage of the event was upbeat, New Mobility's blog headlines Obama's ADA Speech Bombs. That post points out a number of the disability stereotypes I've railed on repeatedly here in the president's speech, and relates the audience's (duh) lack of enthusiasm over an attempt frame medical treatment in a disability rights context. Wrong crowd to try that with.

The review ends with a sarcastic reference to the current situation with the CCA (apparently I was not the only one who felt the idiom lip service was appropriate).

Too, let's give lip service to the rights of Americans to live freely in the community. Maybe then they'll stop handcuffing themselves to my house.

In the comments to the post, some agreed with the negative assessment, but others did not.

What do you make of the president's ADA-Day speech? Good? Bad? Like ADA-Day itself perhaps a mixed bag?

What Doesn't Cause Autism?

Kristina Chew — 2009-07-29T14:27:00-07:00

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.

Privilege

Dora Raymaker — 2009-07-29T11:10:00-07:00

Occasionally some particularly powerful tool for paradigm change erupts--something that shatters assumptions, removes filters, realigns biases, and massively swaps perspectives. White Privilege: Unpacking the Invisible Knapsack by Peggy McIntosh, a checklist of items one can be assured of if they are white in the U.S. like "I can if I wish arrange to be in the company of people of my race most of the time," is one of those tools.

McIntosh's checklist has spawned other similar lists such as The Male Privilege Checklist, the Straight Privilege Checklist, and now, thanks to brilliant work on the part of Bev at Asperger Square 8 and many clever commenters, Neurotypical Privilege: A working document. Bev's original list starts out,

I have never been asked to prove that I am neurotypical.

I am allowed to use the word "we" without being accused of trying to speak for all neurotypical people.

I can share my opinions publicly without fear of being accused of not really being neurotypical.

I can assume that police officers will not become alarmed at my natural body language, and find it necessary to subdue me in advance of any wrongdoing.

I can reveal to my boss and coworkers that I am NT, without fear of losing my job.

I can assume that most restaurants, theaters, stores and other places I would like to go will not be so loud or brightly lit or crowded that I will become unable to function at a basic level.

I can easily find other NT people in movies or on television shows that are not explicitly about being neurotypical.

When people realize I am neurotypical, they do not ask me if I am like a particular character they have seen in a movie.

I do not have to fear that important decisions about my life will be made by autistic or other non-neurotypical people, just because I am neurotypical.

and continues on for the first fraction of the page. The rest of a very long page is contributed items, continued in comments (many of them by some of you), and every one of those comments absolutely worth reading.

This importance of this checklist is not just as a wake-up call to anyone still sleeping in autism stereotypes. It is an illustration that autism issues are in essence minority issues, are civil rights, are human rights issues. If you read nothing else written by someone on the spectrum this year, read this list. (Thank you Bev and commenters!)

The Meaning of a High School Diploma

Kristina Chew — 2009-07-29T00:49:00-07:00

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.

Heat

Dora Raymaker — 2009-07-28T19:06:00-07:00

This post is tragically late. I've been trying to write it for, well, all day. Longer, I started trying to write it last night. It is one hundred and five degrees outside and climbing ever closer to that within. My laptop radiates heat like a convection oven. The cat is sprawled as flat as possible on the floor. The floor is starting to feel warm. My thoughts are sluggish, my browser looks like an abstract painting, and hours go... somewhere. It's like the heat has made me forget how to be conscious.

A few items from my ideas file:

different methods for social change including both tearing things down and building things back up and how both are needed--different paths to advocacy. the first step to fixing a problem is defining it but solutions are equally needed--two sides of the same coin
disability perception and the implicit association psych test
federal funding--where does the money for autism research really go, topic wise? [while this would make a fantastic post, requires a ridiculous number of hours of research]
barriers to diagnosis for adults
speaking out and being labeled a "difficult client" for it--self-advocacy and rebellion

I usually wait until something comes through the feeds that relates to an idea. Then I have an "excuse" to write about it, a tie, an association, a trigger, a connection. This is RIGHT NOW RIGHT HERE RIGHT REAL. Not just my idea, our idea, the world's idea.

But right now, no. No idea. Just heat.

Jonathan King Would Have Been 18 Years Old

Kristina Chew — 2009-07-28T14:05:00-07:00

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?

What is Sally Anne Thinking?

Dora Raymaker — 2009-07-28T09:35:00-07:00

A recent study published in Science theorizes that in AS the capability for understanding mental states exists, just not spontaneously. This conclusion is drawn because study subjects only "passed" a Sally Anne False-Belief Test when verbally prompted, and not spontaneously with their eye gaze.

Deconstructing assumptions a bit (and admitting I have not had time to read the primary source), there are, of course, some questions. How is it known that eye gaze in AS subjects means the same thing as eye gaze in subjects who do not have AS? Particularly as eye gaze is something that often marks people on the spectrum as visibly different? Particularly as movement and perceptual differences are also often noted? How is it known that eye gaze in AS subjects means the same thing as eye gaze in subjects who do not have AS in relation to this particular false-belief task?

If the verbal prompting appears to refute the idea of "mind blindness," then why is it not possible that it does, in fact, simply refute the idea of "mind blindness?" Why is it necessary to hang onto the notion that mind blindness must exist, there is no other explanation for "social deficit?" The fact that "mind blindness" is often a given when talking about autism does not make "mind blindness" itself a fact.

In fact, there is an interesting paper Does the Autistic Brain Lack Core Modules? that deconstructs the "mind blindness" idea further, including discussing language-based versions of the false-belief test. That paper not only discusses deep issues with the concept of mind blindness, but also some issues with assumptions about eye gaze.

Building on existing theory is an essential in science. But also essential is questioning the existing theory itself.

"Mind blindness," regardless of what the press may say, is not a done deal. The question remains open. There are other equally (more so?) plausible reasons for both differences in social communication and for autistic responses to false belief tests.

Special Diets May Do Nothing Special

Kristina Chew — 2009-07-28T00:49:00-07:00

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.

PDA Yay

Dora Raymaker — 2009-07-27T16:58:00-07:00

An article from the Star Tribune (MN) iPods may help Asperger's kids navigate life mostly highlights the use of iPods for social prompts (interesting correlation perhaps with the Scientific American story on verbal prompts for AS which deserves a post all its own). It may be fair to expand the scope of usefulness to Personal Digital Assistants (PDAs), prompts, and the autistic spectrum in general.

A PDA with calendar, tasks, and reminder capabilities can be great for those of us with little sense of time. Many organizational programs have graphical capabilities for people who don't resonate well with numbers or words. Notes, tasks, and reminders also can also substitute for short term memory. The awesomeness of PDAs with a built in GPS is invaluable for those of us with a tendency to confuse easily, especially in new places. PDAs that take pictures can help with memory, navigation, orienting in new places, all sorts of things. And PDA applications with favorite sights, sounds, and games can soothe the nerves. Best of all for anyone with executive function issues is that there is only one does-it-all device to keep track of, not a ton of separate calendars, notebooks, devices, etc. to lose, forget about, and curse.

As a long-time PDA user (as soon as they became marginally affordable over a decade ago), I am quite serious when I tell people my executive function skills are present not in my brain, but in my PDA.

The obvious point here is that a PDA can be an invaluable piece of assistive technology for autism-specific "stuff." Plus, PDAs are mainstream, even "cool," so there's no weird looks for using one.

The less obvious point is that it can be beneficial to think about what sort of tool can give a person a skill they don't otherwise have, rather than pouring energy into trying to find a way to make that person have the skill unassisted. What actually works is more important than appearances.

On Achievement & Accomplishments

Kristina Chew — 2009-07-27T14:27:00-07:00

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?

Monday Autism News Potpourri

Dora Raymaker — 2009-07-27T10:38:00-07:00

Thumbs Up: The United Nations Convention on the Rights of Persons with Disabilities was signed on Friday as planned. Here's print coverage from USA Today and (ironically non-captioned) video coverage from CSPAN. The CSPAN video is of the actual signing ceremony, and it starts off with a nice little speech by Hilary Clinton.

Thumbs ? : The motivation for the ADA-AA came from issues with the way the Equal Employment Opportunity Commission (EEOC) had decided to implement the ADA. The original intent for the ADA is as a civil rights law, and the ADA-AA was to restore that original intent. Now debates about EEOC implementation seem to be intent on leeching the power from the amendment. Will the fate of the ADA-AA be to restore the ADA as powerful civil rights legislation, or will we end up back at square one?

Thumbs Down: As the CCA remains off the legislative agenda, CCA rallies continue with confronted the Democratic National Convention. Adapt has set up a sweet action campaign page, complete with (also transcribed) video.

Not all news on the CCA front is bad; some legislators have signed onto it. Check the list for your legislators--if you see their name on it, send them a thank you; if you don't see their name on it, ask them to please sign on!

Thumbs Up!: On a non-policy note of special interests and the path to college successes, here's a lovely article about Cole Kingsbury, geologist and going to college in Alaska. (Side note: volcanoes--YAY!!! Definitely, IMO as well, a perk of living in Oregon!)

Down on the Urban Homestead (and in the Kitchen)

Kristina Chew — 2009-07-27T00:43:00-07:00

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.

In baking, he's interested in dumping the ingredients into a bowl and mixing (and sneaking tastes). The final ingredient draws his interest when it comes out of the oven but he's less inclined to eat the results of our handiwork afterwards. I'm hardly ready to hand Charlie a knife to mince parsley with, but he can certainly learn to measure out ingredients and stir; the last time we made brownies, we worked on breaking eggs. (Previously, Charlie took the eggs from the fridge and placed them atop the other ingredients.)

So I've been doing a lot more cooking this summer.

Nothing too revolutionary or in-the-interest-of-autism-advocacy about that and the reason is simply that---as I'm not teaching summer school for the first time in awhile and I've many fewer administrative duties---I've had more time. Time to chop green onions and ginger and parsley. Time to cook chicken "velvet" style and make lemon sauce and to put together the batter for pancakes and have Charlie help mix.

With Charlie, we like to show rather than tell. Jim taught him to ride a bike with minimal verbal explanations. We held Charlie's feet on the pedals of his tricycle and then his little training-wheel'd bike and showed him how to rotate his legs. Jim started teaching Charlie to use the hand brakes by, simply, putting his hands over Charlie and saying "squeeze brakes." When they were actually riding bikes in the street and came to a stop sign, held Charlie's shoulder while repeating "squeeze brakes," only gradually fading out the shoulder hold.

We still use photographs in Charlie's activity and other schedules, but there's nothing like actually (versus in something like a video) showing him how to do something. And cooking being the multi-sensory experience that it is---involving taste of course and smell and touch---drawing on all those other senses is a good way for Charlie to learn some things, some life's lessons that start in the kitchen and that will, we hope, radiate out beyond the yard and our suburban homestead and into the future.

Sarah Palin, Future Advocate for Disabilities?

Kristina Chew — 2009-07-26T00:40:00-07:00

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.