Monday, March 25, 2013

Anonymous Questions on Life with ASDs

I have a text file I maintain with question and topic suggestions for each of my blogs. Many of the questions to The Autistic Me open with, "I didn't want to post this publicly…" and then proceed to ask questions that range from the obviously personal to those I suppose relate to a private matter. Most of these questions are not about my private life — but asking the question reveals what someone else must be struggling with in life.

Allow me to post a few of these topics and some short responses.

Q: I am being bullied at work/school/local club.

Ask a friend or family member what they suggest. I am the least qualified person imaginable to answer that question, since I tend to simply leave situations I dislike. If I don't like my work space, I leave the job as soon as possible. If I felt uneasy with a teacher, I would try to take a different course. If I don't like a social group, I stop attending the meetings. My method isn't the best approach for most people.

If you are in a larger company or university, there are human resources departments and disability specialists. I would go to HR with any concerns in a workplace. At a university, contact the office that oversees disability services. I have gone to both of these in the past. Sometimes they help, sometimes they do not — but at least you can try to resolve issues before they get out of hand.

Q: I don't like going to {blank} but my family/friends/spouse love it.

Trade discomforts. If my wife is willing to go to a play with me, then I should trade her time doing whatever she loves. Yes, that's my real-life example — I like live theatre, musicals, opera, and other "cultural" events. She doesn't like them. I've dragged her along to too many places she'd rather not be. Try to trade that time, somehow.

Thankfully, my wife doesn't like many things I don't enjoy. I'm lucky. Both of us would be happy to spend hours in craft stores, bookstores, history museums, and wandering gardens.

Q: Do people think you are normal?

You'd have to ask them. I have no idea what "normal" is — but I certainly don't think I'm that odd. I am not "disabled" in my mind, simply a bit awkward at times. I have some physical limitations, but they also aren't obvious most days. I assume most people think I am as "normal" as an over-educated teacher, writer, programmer, geek, can be.

Q: Do you have many friends?

I have a few, but we left friends and family behind in California and Minnesota. We're still new to Pennsylvania. I believe we have a few friends here, but that might be presumptuous of me.

Q: Do you like Big Bang Theory?

I've addressed this several times. No, I do not. I haven't seen a complete episode, and I don't really care to.

Q Part 2: What do you read and watch?

Most of my books are non-fiction: history, economics, philosophy, religion, art, graphic design, and computer programming. The last book I read was a history of economics and I am currently reading a programming text.

My wife and I just watched "Pillars of the Earth" and I enjoy historical fiction. I actually liked the old 1970s and 80s miniseries, like "Roots" and "Thorn Birds" for some reason. I have lost track of how many times I've seen Jane Austen adaptations, especially the BBC/A&E version of "Pride and Prejudice." I love classic films, too, including silent films and foreign films.

Q: Do you have children?

No, but we do consider our cats family.

Q: Have you tried {fill-in-the-blank} to treat your symptoms?

I've addressed this before, too. I'm probably not interested in treatment X. I'm not going to change my diet, I'm not going to take any pills, and I am not going to see any specialist promising a "cure" for my traits. I have seen doctors for my other medical issues, such as migraines and my palsy.

Q: Why do you dislike the terms "Aspie" and "Autie"?

They don't work for me. I am not "proud" to have an ASD diagnosis, it is simply something applied to me by some specialists with a book of labels.

Q: Do you disclose your ASD to people?

Not unless I have to — or if they read this blog. I am not an activist, and I don't really see how the ASD affects 90 percent of my daily life. (My wife might disagree.) I know my limits and try to avoid situations that would exacerbate my autistic traits. If I don't feel well, my wife tries to convince me to stay home, knowing everything will be a trigger. I'm not compelled to discuss autism with most people I meet.

Q Part II: Don't you speak to groups about life with an ASD diagnosis?

Yes, I do speak to groups, but that's different. A support group or people attending a conference are seeking information for a purpose. If I can help, I will. But, my students don't need to know about my ASD. Most of my colleagues don't need to know. If someone asks, I'll answer questions, but to me it is like living with any challenge — it is simply a part of my life, not my entire being.

Wednesday, March 20, 2013

Autism Prevalence Is Now At 1 In 50 Children - Forbes

The conclusion of this column makes a point I've stated repeatedly: we are getting better at diagnosing “autism” — while the criteria also keep changing.

Autism Prevalence Is Now At 1 In 50 Children - Forbes: You will probably see a lot of headlines about the 1 in 50. Some organizations might even try to use those numbers to scare people, to talk about an “epidemic” or a “tsunami.” But if you look at the numbers and the report itself, you’ll see that overall, the numbers of people born with autism aren’t necessarily increasing dramatically. It’s just that we’re getting better and better at counting them. The next step is getting better at accepting autistic people, seeing their potential, and ensuring the supports and resources they need to fulfill that potential.

Monday, March 18, 2013

Collaboration Conundrum: Mastering Group Projects At School and Beyond

Autism Society National Conference 
July 10-13, 2013

David L. Lawrence Convention Center
Pittsburgh, PA

Title: Collaboration Conundrum: Mastering Group Projects At School and Beyond
Content Area: Social Skills
Target Audience: Adolescence and Adulthood
Understanding Level: Intermediate

Description: Schools and workplaces embrace collaboration, assuming that groups engaged in brainstorming, crowdsourcing, and agile development produce better ideas than individuals. Although new scholarship raises questions about the benefits of collaboration (Cain 2012), our cultural bias towards extroversion and social interaction means navigating collaborative projects is an important life skill for autistic students and adults. Schools claim to appreciate different learning styles, but they overlook different social styles. This presentation explores how autistic people can succeed in collaborative settings.

Content Plan: Collaboration Conundrum: Mastering Group Projects At School and Beyond
Social skill deficits and communication challenges are among the traits associated with autism spectrum disorders (ASDs). Unfortunately, many educational practices and business models rely on advanced social skills and interpersonal communication. For autistic individuals, the collaborative nature of classrooms and workplaces presents an obstacle to success. Group work is a puzzle without an obvious solution many with ASDs. How we address the collaboration conundrum in our classrooms and offices might determine if we offer autistics inclusion or alienation.

While researching ways to design more inclusive college classes, I heard heartbreaking recollections of autistic students failing courses primarily because of collaborative assignments. University and college instructors told me that collaboration was “non-negotiable” and “mandatory” in some courses. Because these were required general education courses, the collaboration policies created an impenetrable barrier for some autistic students. Autistic adults have shared stories of workplaces that resembled these classrooms, with “team spirit” emphasized over any measurable results. A culture that celebrates social interactions, regardless of the actual value generated by groups, labels individuals as “failures” for lacking social skills.

During this presentation, participants will:
  • Understand why schools and companies perceive group projects as valuable;
  • Learn strategies for collaboration that accommodate autistic traits;
  • Learn the benefits of collaborative technologies;
  • Explore how autistic students and workers can succeed in collaborative settings; and
  • Advocate for different, research-based approaches to collaboration.
The presentation begins with an overview of why in-person collaboration has come to dominate pedagogical theories. Appreciating why we assume face-to-face and “synchronous” group discussion are more productive than other methods of collaboration helps us form arguments for alternative approaches. Groups talking around a table—often past each other—is a cultural norm, not a universally proven collaborative method.

Susan Cain’s 2012 book, Quiet: The Power of Introverts in a World That Can't Stop Talking, examines the cultural and theoretical biases that favor charming extroverts over other individuals. Cain and other scholars raise questions about the benefits of group work as practiced throughout our society.  The American cultural bias towards extroversion and social interaction means navigating collaborative projects is an important life skill for autistic students and adults. Schools claim to appreciate different learning styles, but they overlook different social styles.

As a professor, I teach my courses alone. I have the support of a department and a school, with colleagues available to help and guide me, but I create a syllabus to reflect my strengths and I teach the course. Yet, we insist on gathering our students into "teams" and make them engage in face-to-face group work, which might be the least effective method for collaborating. Even when professors are collaborating on research, the process is nothing like what we ask of our students.

Writing in the New York Times, Cain illustrated the zealous dedication to collaboration in classrooms:
Our schools have also been transformed by the New Groupthink. Today, elementary school classrooms are commonly arranged in pods of desks, the better to foster group learning. Even subjects like math and creative writing are often taught as committee projects. In one fourth-grade classroom I visited in New York City, students engaged in group work were forbidden to ask a question unless every member of the group had the very same question. (Cain 2012)
After an overview of how current approaches of collaboration came to dominate our classrooms and offices, the presentation offers basic strategies to help individuals with ASDs participate in group projects. The strategies include written agendas, publicly shared schedules, and formal procedures for resolving disagreements. Creating constraints that help guide a group aids everyone, not only the team member with an ASD.

Working with individuals with ASDs, attention deficit disorders, and other executive challenges, I have found technology offers more opportunities for success. Using email, online calendars, and content management systems, team members can interact asynchronously. This means each member participates when, where, and how he or she is more comfortable. The ability to consider ideas and suggestions without social distractions benefits all project participants. Traditional meetings allow strong personalities to dominate discussions, while online forums equalize individuals. Best of all, technology can accommodate special needs with greater flexibility than physical meeting spaces.

Autistic students and employees can succeed if their teachers and supervisors come to appreciate different social styles should be treated respectfully. Our schools and workplaces embrace collaboration, assuming that groups engaged in brainstorming, consensus design, and agile development produce better ideas and products. What we must do is explain that alternative approaches to collaboration might better achieve the desired results.

The presentation concludes with a discussion of how we can advocate for asynchronous, technology-enhanced approaches to collaboration. The Wikibooks project, which seeks to compile peer-review quality academic content via collaboration, provides one example. Many online discussion forums also embody effective collaboration.

Many autistic teens and adults do participate in online activities, from academic discussion forums to multiplayer games. While social and communication challenges exist online, the success of autistic individuals in virtual spaces provides evidence that technology-based collaboration offers accommodation and inclusion.

Learning Objective(s):
  • Understand why schools and companies perceive group projects as valuable.
  • Learn strategies for collaboration that accommodate autistic traits.
  • Advocate for different, research-based approaches to collaboration.
  • Learn the benefits of collaborative technologies.
Christopher S. Wyatt, Ph.D.

Biographical Sketch: As an autistic individual and professor, Christopher has experienced the challenges classrooms and workplaces present to individuals with ASDs. His research has led to strategies for success in college courses and designs for more accommodating virtual spaces.

Friday, March 15, 2013

Another Hospital Trip

Sunday was my turn to visit the local hospital. After I fainted two or three times, my wife managed to get me to the local emergency room. It seems the flu was winning — I was seriously dehydrated.

We took Muttley to the vet Wednesday, and the vet had a cold. Otherwise, I wasn't around many people.

By Friday, I wasn't feeling so great but thought it was simply exhaustion. I went to local mall to walk and write. I grabbed a sandwich for lunch, started to walk a second loop around the mall, and started to feel weak. I drove home and took a nap.

After my nap, my wife and I collected a half-pallet of bricks from next door. The construction manager generously said we could claim any of the left-overs from the various homesites and use the brick. Another homeowner has done the same, using the bricks to build a nice box around an air conditioner and decorative edging around a patio. I didn't finish collecting all the bricks, because I felt weak.

Saturday was spent feeling horrible. Nausea, headache, dizziness, and all the other things that accompany the flu. It was pretty obvious this wasn't a mere cold.

Sunday morning, I was barely able to stand.

I recall using the restroom and washing my hands. My wife apparently heard two "thuds" and came to see what happened. I was on the floor. It isn't the fist time I've fainted, thanks to anemia, but it could have been dangerous. You don't want to faint in a bathroom with sharp corners, a toilet, and a tub. Lots of places to whack your head.

The next thing I somewhat recall is being in the hallway, on the carpet, wanting to sleep. I felt like I had stepped out of the shower without drying. Susan dried off my neck and called the after-hour medical number.

We made it to the emergency room, where I received fluids for dehydration and medication for the stomach cramps and nausea.

Without my wife, I wonder if I would have been on the floor for hours. I was so tired, I could barely move. I don't think clearly when I'm tired, and there is no way I was thinking clearly Sunday.

I often tell audiences that "independence" isn't the same as living alone. We need other people, especially friends and family. Without my wife, I wouldn't be alive and successful. She is my best friend — and much, much more. Throughout all my medical adventures, she's been there for me. Throughout personal challenges, she's been there, too.

More than once, I've thought my wife deserves better than living with me. And, yet, without her I'd be lost.

Don't let a desire to be "independent" lead to bad decisions.

Tuesday, March 12, 2013

Writing and Autism: Return to a Past Topic

Two years ago, I posted on the topic of "Writing and Autism" because teachers and students were asking me for suggestions to improve grades on written assignments. I posted two entries, and then redirected people to the Tameri Guide for Writers, which my wife and I maintain. Many of the issues I might address for students with ASDs and other challenges were similar to what I observe for most students. Something about the way we teach writing in the K-12 system fails to prepare students, and students with disabilities struggle a bit more with writing.

My doctoral dissertation raised questions about how well autistic students navigate academic writing, especially at the college level. The mandated first-year composition courses common in our universities carry a number of assumptions about what is "normal" and what is the "right" way to think about the world around us. Some of the classic scholarship in writing studies makes claims about thinking and problem solving that outright contradict the autistic/neurologically different experience. 

It is important to raise questions about what is "right" when academics make absolute assumptions about what constitutes higher-level thought and creativity. 
My first two posts can be read at:
Writing and Autism: Introduction
Writing and Autism: Organization 
Some of the issues with writing I might address include:
  • Lacking organization in essays and papers, often jumping from topic to topic without transitions
  • Assuming audience familiarity with information, generally assuming too much prior familiarity with the topic addressed
  • Emphasizing the personal instead of the general, leading to a "first-person" perspective when inappropriate to the genre
  • Failing to explain conclusions, again assuming readers share the author's experiences and views
  • Using figurative language poorly or incorrectly, an issue associated with "undeveloped" metaphorical thinking (and second language learners)

I posted on the first topic, organizing a paper

Again, thematic organization is not a unique problem: most papers I read at the college level have issues with organization and flow. If it helps, at least parents and students should realize "autism" is not the "problem" in most cases. Students struggle with academic writing and the "genre norms" we grade.

Please bear with me as I pause to consider how to address these topics in a blog. I do not want the blog to be overly academic — a style I generally dislike, anyway, when your intent is to inform the general public. The style of academic writing is something I found troubling among other autistics, too, so at least I'm not alone when I state that it feels "inauthentic" to me when I have to write an academic paper.

I'll be sure to mix some other topics in with the posts about writing, too. 

Friday, March 8, 2013

Rising Cost of Special Ed in Minnesota Schools

According to federal laws, public schools and those post-secondary institutions accepting public monies (most colleges and universities accepts grants and federal monies) must make every “reasonable” effort to accommodate students with special needs. What is reasonable when schools are running deficits?
Rising Special Ed Cases are Huge Cost
by Jeffrey Meitrodt and Kim McGuire, Star Tribune

Updated: March 3, 2013 - 6:07 AM

Room 112 is walled off from the rest of a Maplewood public school by an ugly row of concrete blocks.

Its wooden entrance was replaced with a steel door, and the carpet and plumbing fixtures removed, all so its sole occupant — an 8-year-old boy prone to attacking teachers and classmates — would have nothing to destroy during his daily outbursts. Even his books and toys were kept on a cart that could be wheeled away at a moment’s notice.

Every school day, the boy, who has autism and doesn’t speak, came to the barren cell built only for him. Two adults spent all their time teaching him to communicate.

The price? $153,000 for a year of instruction, nearly 20 times what’s spent on a student without special needs. “The costs are staggering,” said Connie Hayes, superintendent of the public school district that built the classroom.
Staggering? For $153,000 you can pay for a “regular” class of 15 to 20 students. That's including the salary of the average teacher, supplies, fixtures, and maintenance. One student costs what an entire classroom costs. That is difficult to justify — there must be a more cost-effective and inclusive approach. But, what do we do with students posing a risk to themselves and others?
A decade ago, the boy would have been institutionalized. Today, he’s sent to public school. His education in Room 112 tells a larger story of a growing predicament confronting schools across Minnesota.
I cannot argue for institutionalization, but I have met parents and teachers injured by students. Large children and teens are easily the size and strength of an adult teacher. The reality is that few people would be able to properly restrain and calm a violent teenager with paranoid schizophrenia.

But, the majority of costs are not the violent students. The basic educational needs of students with disabilities are naturally more demanding and more expensive than the needs of most other students. (We can argue overall funding, but plenty of studies reveal U.S. spending per student is slightly above average for advanced nations. Like healthcare, we spend more… and get about the same or slightly less for the money.)

Autism is among the special needs behind the rising costs.
A sharp rise in students diagnosed with major disabilities is forcing many schools to take difficult and at times divisive new steps to tailor classrooms to the disabled students’ needs, no matter how expensive that gets.

Even as overall school enrollment declined over the past decade, the number of disabled students rose 14 percent, reaching 128,000. That includes a fivefold increase in students with autism.
Children with autism become teenagers and adults with autism. How will our schools deal with these students, who would have been institutionalized as recently as the early 1980s?
At 17, Orion — whose handicaps include autism and cerebral palsy — has attended schools in five districts in Minnesota and Wisconsin. His mother, Shelbi Setchell, battled administrators at almost every stop, starting when he was stuck with a “washroom” for a classroom in first grade.

She knows her son, who weighs 185 pounds and often slurs his words, can be difficult. His hearing is hypersensitive, and he can turn violent when surprised by loud noises or if he feels threatened. He has no school-age friends. He’s been invited to just one birthday party in his entire life, and it was a disaster.
The only solutions schools can provide cost money. A lot of money.
Orion now attends the North Education Center, a $35 million facility that opened last fall. It is the envy of special education directors around the state.

Compared to noisy, makeshift classrooms used by special ed students in many parts of the state, Orion’s new classroom is state of the art. He has his own timeout room where he can relax under a revolving mood light. He keeps the light green, his favorite color.

His carpeted classroom contains a swing and a rocking chair for working off excess energy. The smartboard includes a video game Orion designed with his teacher — a variation on Concentration using corporate logos, one of his obsessions.

For occupational therapy, Orion rides a customized tricycle (starting price: $1,980) down the hall built extra wide so two trikes can easily pass. Staffers keep tabs on him by checking any of the 131 camera lenses mounted in 41 locations throughout the building.
Consider that the student has his own space. His own tricycle. I'm not sure how that constitutes “occupational therapy” but there must be some rationale for such an expense. At some point, other parents are going to raise the issue of “fairness” and politicians will listen. While I can argue that supports for students with special needs lower long-term costs, parents might not see it that way.
Orion’s education isn’t cheap. Each of the 40 students in his program costs about $70,000 per year, more than three times the average special ed student in the state. Altogether 250 staff members, including teachers, therapists and social workers, work with the school’s 450 students.
 It’s a similar story at the other special districts serving the Twin Cities. These so-called intermediate districts have some of the highest average student costs in the state.
Schools are going broke — primarily as a result of special education expenses. What can we do better? How can we reduce these costs and still meet the needs of students. And how can we work towards including students in classrooms, whenever possible? Clearly, some students will not be part of the traditional classroom, so they remain cost-intensive and labor-intensive for schools.
Like most school districts in Minnesota, St. Paul doesn’t receive enough money from the state and federal government to pay for its special education costs.

In its case, the funding gap is about $36 million, or 37 percent of the $98 million it spent on special education last year.

In Minneapolis, which is facing a $34 million funding gap for special education, administrators are considering $25 million in budget cuts.

Still, Minneapolis paid $14.7 million to other districts for special education services last year, including $3.9 million to District 287 to cover the costs of 168 disabled students. Casey said Minneapolis made just 10 of those referrals to District 287.
Ironically, federal laws and regulations make it impossible to cut spending, even if it is possible to switch from one expensive approach to a more cost-effective (and educationally superior) approach to special education. Yes, that's government for you: better and cheaper is not allowed without a serious fight against the Dept. of Education. Good luck winning that battle.
For many superintendents, the most frustrating federal rule is one that prohibits schools from reducing special education costs unless they can document enrollment declines or other special factors. 
Ed Saxton, superintendent of the St. Francis school district in the north metro, estimated his district could save as much as $500,000 by replacing an older communications device with iPads. But he said the rules make it almost impossible to switch.

“Over the past 10 years, we’ve cut art and music in elementary. We’ve cut activity buses. Our class sizes are higher than they used to be. … The one place you can’t cut is special education,” Saxton said. “Why aren’t we looking at the most efficient ways of servicing our kids with the highest needs? It doesn’t make any sense the way we do it.”
And then, we have another reminder that not every student can be served properly in public schools. For the parents of these students, schools provide a break — but schools can only do so much. What they can do, is expensive and not significantly better than institutionalization.
One of the most expensive students in Minnesota landed in the special education wing of John Glenn Middle School when he was 8 years old.
The boy, who was diagnosed with autism and attention deficit hyperactivity disorder, could not speak or communicate with even the most rudimentary symbols, according to District 916 principal Mollie Wise, who helped design the boy’s instructional program. 
At his previous school, he had been disrobing every day and urinating or defecating in class. When staff members tried to remove him, he would become violent, hitting or biting anyone who got too close.

“Everyone said this might be the hardest student you’ll ever work with,” Wise said.

District 916 decided to build him his own classroom, one in which his aggression could be contained. It cost $88,000, and is the most expensive of the eight rooms the district has built for individual students in the past five years. The district declined to identify the boy for privacy reasons.

“It’s a safe, simplified environment,” said Naidicz, 916’s special ed director.
These are difficult issues, even in the best of economic times. With schools in many northern states dealing with declining enrollments, small tax bases, and other issues, special education budgets are the overwhelming source of deficits. We need a solution, one that serves all students.

Monday, March 4, 2013

Feeling Powerless

My wife had an outpatient procedure March 1, and I hated every minute of it.

I know it has never been easy for my parents or my wife when I've had my little medical misadventures, but it stinks to have to be the one in the waiting room.

Sure, it was "no big deal" in the end. Her doctor told me things had never gone so smoothly; my wife is in great shape and the procedure took mere minutes.

The "mere minutes" in the operating room left me waiting for two hours. I walked the corridors, visited the hospital gift shop, the coffee shop, and the diner. The hospital diner was nice, with a counter and round stools like you might find in any 1950s malt shop.

Every surgery is major. Anesthesia is dangerous. Surgery is dangerous.

When it is me, I don't worry as much as I did when my wife was in the operating room.

If something happened to me, I know she'd be okay. Her family and my family would see to that. But, if anything ever happened to her, I'd be crushed. She makes me a much better person. She helps me navigate the world, especially when I'm overwhelmed by everything around me. She doesn't need me nearly as much as I need her.

Yes, it is selfish, but the world is also a better place with her in it.

I'm still a bit tense; I've rarely felt so powerless as when she was in surgery. I'm glad she handled the surgery well. She was fine only hours later.

Friday, March 1, 2013

The Librarian

This weekend, TNT aired "The Librarian" movies. It reminds me of other great references to books and libraries.

From The Mummy (1999):
Evelyn: I may not be an explorer, or an adventurer, or a treasure-seeker, or a gunfighter, Mr. O'Connell, but I am proud of what I am.
Rick: And what is that?
Evelyn: I… am a librarian.
From the Doctor Who episode "Tooth and Claw" (2006):
Sir Robert: Nevertheless, that creature won't give up, Doctor, and we still don't possess an actual weapon!
The Doctor: Oh, your dad got all the brains, didn't he?
Rose Tyler: Being rude again!
The Doctor: Good, I meant that one. You want weapons? We're in a library! Books! The best weapons in the world! This room's the greatest arsenal we could have - arm yourselves!
I found the idea of being a librarian very appealing—working in a place where people had to whisper and only speak when necessary. If only the world were like that!
― Peter Cameron, Someday This Pain Will Be Useful to You

Google can bring you back 100,000 answers, a librarian can bring you back the right one.
― Neil Gaiman

When the going gets tough, the tough get a librarian.
― Joan Bauer

A book is a fragile creature, it suffers the wear of time, it fears rodents, the elements and clumsy hands. so the librarian protects the books not only against mankind but also against nature and devotes his life to this war with the forces of oblivion.
— Umberto Eco

Not all librarians are evil cultists. Some librarians are instead vengeful undead who want to suck your soul.
― Brandon Sanderson, Alcatraz Versus the Scrivener's Bones