Cracking the Shell
Seattle writes its prescription for children with Asperger's syndrome, a mild form of autism that combines uncanny knowledge with awkward social skills.
Meet Robert Goodfellow, age 6.
While other little fellows his size would play together in their Seattle neighborhood, he used to sit by himself in his yard, peeling the bark off of sticks, fascinated by how it stripped away from the light, pristine wood inside. He would trill songs over and over again, or talk about his family's vacations to anyone who would listen—and even those who wouldn't. He refused to bathe.
"It was so incredibly weird," says his mother, Kathleen Goodfellow. "I used to think, 'Oh my God, what is going to happen to him?' "
Now, with his teachers' encouragement, Robert has channeled his obsessiveness to a more socially acceptable topic: baseball. Test him on any Seattle Mariners stats—ask him how many RBIs Edgar Martinez had in 1999, just ask him—and he will not disappoint. Teachers also taught him to juggle, which he excels at, to the delight of his peers on the playground. He even likes juggling more than tree-bark peeling now.
"Socially, he was a weird kid," says his teacher, Ilene Schwartz, echoing Robert's mother. "Now he can be the baseball nerd, and kids will like him."
checks in on her pre-K son's class at the Experimental Education
Unit at the University of Washington. All of the classrooms at
the school have built-in viewing rooms with two-way glass so that
parents and teachers in training can observe instruction.
Then there's 10-year-old T.J. Boone. He can do a math worksheet in his head. Mind you, his mother and teachers have to make sure he writes down the answers and shows his work. With help, he has finally conquered his anxiety about spelling, a fear that would generate outbursts in class. He recently brought home a grade of 100 on a vocabulary test.
"He used to say school was easy and hard," says T.J.'s mother, Carol Jahn. "Easy, because the work was not challenging, and hard, because of all of the social situations and pressures he couldn't handle."
Or how about Kevin Challoner, 9, who is intrigued by toilets, clocks, and computers, and likes to take them apart in his back yard. He enjoys dragging his parents to a computer outlet store to look at the new parts and software.
Kevin can confidently advise a teacher on which printer to buy, but he hides under his desk at school whenever he feels uncomfortable. His teachers are working with him on that.
These three Seattle children have what is called Asperger's syndrome, a relatively newly diagnosed disorder on the autism spectrum. What they need to learn most in school, at least in the early years, isn't found in textbooks: how to move through the world around them without putting people off with their eccentric behavior.
T.J. Boone works on
math homework with his mother Carol Jahn, who admits she cannot
do the equations as fast as her son.
Sometimes called "little professors" for their savant-like tendencies, students with Asperger's syndrome tend to excel in subjects that interest them, compiling amazing knowledge bases in their areas of obsession. But they require drilling in such day-to-day basics as how to make eye contact, or how to stand the appropriate distance from another child in line.
There is no cure for autism disorders, complex developmental failings of the brain. But educators in the 47,000-student Seattle school system believe they can help students with autistic disorders who are "high functioning" cultivate their distinctive talents so they can one day make productive, even outstanding contributions to society.
The district launched a pilot class at an elementary school for such students four years ago, and two years later designed a districtwide program exclusively for students with high-functioning forms of autism. Twelve such classes are now offered in elementary, middle, and high schools in the district, and educators here plan to add seven more next fall.
Given the program's short history, no research yet exists on its effectiveness. But parents and other special educators believe Seattle may have found the key to unlocking the potential of little people like Robert, T.J., and Kevin.
The demand for services for the rising number of children diagnosed with autism disorders, one of the fastest-growing categories of disability in special education, presents a new challenge to school districts. ("Sharp Rise Seen in Identification of Autistic Pupils," Oct. 20, 1999.)
Disorders on the autism spectrum vary in the severity of symptoms, when the onset of symptoms occurs, and whether they exist along with other disabilities, such as mental retardation or severe language impairment. Boys are four times more likely than girls to have a diagnosis on the autism spectrum. People with forms of autism who are more intelligent and communicative, including those with Asperger's, are considered "high-functioning."
For students with Asperger's syndrome, classes for severely autistic children are not academically rigorous enough. And the techniques teachers use for students with behavior disorders just don't help, experts say.
Boone looks over a
spelling assignment on which he recieved a perfect score.
Because the American psychiatric community has officially recognized Asperger's syndrome for less than a decade, it is difficult to say how many people in this country have it. But experts, based on diagnostic rates, estimate that one in 500 people has some form of autism. Studies of people with autism have shown they have abnormalities in several regions of the brain. Some researchers believe those findings suggest that autism could result from a disruption of early fetal-brain development.
But the exact cause of both autism and Asperger's syndrome is unknown. Researchers believe some who develop it may have a genetic predisposition. Others think it may be caused by postnatal factors, including vaccinations, a theory disputed by research. Autism disorders appear usually in the first three years of life.
Educators from around the country, and even as far away as Japan and Korea, have made or planned visits to the Seattle program to study it. And school officials here say they are deluged with telephone calls from parents throughout the United States who are willing to pull up stakes and move to the Northwest just to send their children to the district's special classes. A few families have followed through on that impulse, officials say.
Officials here were even hesitant at first about Education Week's plans to do a story highlighting the program. They fretted that the national publicity would generate even more phone calls and relocated families.
The Seattle school system now has 165 identified autistic students, 98 of whom are in the program for students with high-functioning autism and Asperger's syndrome.
The living room of
the Jahn house has been taken over by a spread of T.J.'s favorite
toys: Legos, which lie several inches deep.
"We realized we didn't have the right classes for these students," says Michelle Corker-Curry, the special education director for the district. "They have very different needs than the severely autistic students. It was so important to create a program for them, because with the right educational services, they can one day get jobs, have families, and lead relatively normal lives."
As in many districts, the Seattle educators began seeing more and more students like Robert, T.J., and Kevin after 1994, when the American Psychiatric Association expanded the definition of autism to include a broader spectrum of disorders. Even though Hans Asperger, an Austrian doctor, first described the disorder in 1944, Asperger's syndrome didn't appear in the Diagnostic and Statistical Manual of Mental Disorders until 50 years later. European countries acknowledged the disorder long before that.
In the Seattle program, Asperger's students attend mainstream classes as much as possible, sometimes with the help of a school aide. The aide will try to help the teacher with other students in the class as well, so the Asperger's student won't feel stigmatized. Asperger's students here spend time in a special education classroom only when they need to work on certain skills. The special classes are small, with only seven students assigned to a teacher and an aide.
Their special education teachers act more like case managers, monitoring the pupils' schedules, serving as their advocates with regular educators, and teaching them special lessons on behavior, social skills, and life skills.
If the program succeeds, Seattle educators say, it might help rescue the children from a life of social isolation. Because students with autism often lack the ability to read social nuances and the emotions of others, they risk being left out of the human experiences of making friends, getting punchlines to jokes, and having meaningful interaction.
The earlier that children with autism get the right services, the better the prognosis is for improving the course of the disorder. Improved diagnostic tools and increased awareness have made it possible to detect disorders in the autism spectrum in children as young as age 2.
Making use of the research community around them, Seattle district leaders have for years bought slots in an early-childhood program for pupils with autism through the University of Washington here. The program serves a combination of autistic children and typically developing children from birth to age 6.
As Mozart music
plays, Lauren Frost is spun in a tire swing by occupational
therapist Alice Glenn at John Hay Elementary as a sensory
Before fall 2000, even students like T.J. who attended preschool at the university were left without a clear path of classes in the public school system that would build on that early experience. Now, the university's program has become just the first stop.
That first stop, called the Experimental Education Unit, includes classrooms with two-way mirrors that allow parents and teachers observe undetected what look like typical preschool and kindergarten classrooms. But to the knowing eye, the seemingly mundane activities of youngsters playing games together and coloring pictures are laced with heartbreaking moments and small triumphs.
Over there, for instance. One little boy walks across the classroom and hands a ball to another small boy.
This was not spontaneous play, but rather an assignment by the teacher to help the first boy initiate an interaction with a classmate, which he did to the thrill of observers.
Teacher Jeff Callahan
reads with Lauren Frost in a special room set aside for the
Teachers point out a 3-year-old boy. He reads at the 6th grade level and can draw maps, but is not toilet trained. They are working with his parents to help him with that.
The teachers are pleased when they look over at 6-year-old Robert Goodfellow, the Seattle Mariners authority. Surrounded by other kids, he is holding forth on his team.
"Robert is going to sail," says Schwartz, his teacher. "Baseball was such a natural choice for us to introduce to him."
Just two years ago, Robert wouldn't brush his teeth, clip his nails, or comb his hair. And he wouldn't allow his mother to help him with the grooming. So Schwartz made visits to his home to give him cue cards, pictures, and checklists to teach him about grooming. Teachers made a videotape that showed Robert going through the process so his parents could keep it at home for him to review.
Teachers also have drilled him on how it is nice to make eye contact and respond to questions. Most of the time now, his behavior is hardly distinguishable from that of the typically developing children in the kindergarten class, Schwartz says.
"It's like getting your child back," his mother adds.
But Kathleen Goodfellow is not sure she wants to send her son to the public schools for 1st grade. Perhaps private schools might offer him a better education. What if the special public school programs lose their funding?
District officials say the program costs $1.5 million a year to run, about $128,000 for each of the 12 classes.
Lauren Frost is a
fourth grader in the high-functioning autism/Aspergers program at
John Hay Elementary.
Four years ago, when T.J. Boone was ready for 1st grade, his mother didn't have the same option. Carol Jahn tried private school, two of them actually, but her son was asked to leave both because of his behavior. So Jahn enrolled T.J. in 2nd grade in public school. The Asperger's program did not yet exist.
For the entire 2nd grade year, Jahn would not leave her house during school hours for fear that she would miss a call for help. The classroom aide assigned to her son, perplexed about how to handle T.J., would often grab a cellphone, slip out of the classroom, and call Jahn for back-channel advice.
"She wasn't supposed to be calling me," Jahn says. "She was supposed to be talking to the teacher, who didn't know anything about this. So she would whisper into the phone to me: 'T.J. is doing such and such—what should I do?' "
There were times T.J. would get up and wander around in the middle of class. Jahn suggested the aide take him for a walk in the hallway. Or when he would get upset, she would tell the aide to put her hands on his shoulders to gently calm him, rather than confront him. Questions like "Why are you doing that?" only seemed to escalate such incidents at home.
When the public schools started the program for students with Asperger's syndrome, T.J. was among the first enrolled. And the existence of the program has made a big difference, his mother says.
"You can have a good teacher one year, and then a bad one the next," Jahn says. "It's just so inconsistent when there's not a structured program with support at the top."
While Asperger's students may be masters in computers, science, or math, certain aspects of school favored by other children are hard for them. For students with Asperger's syndrome, the freewheeling social scene of recess and lunch can be the most stressful parts of the day.
T.J. used to go off on his own at recess, sometimes refusing to go outside, his mother says. But Principal Cathy Profilet of Viewlands Elementary School in northwest Seattle, T.J.'s school, created an alternative "indoor recess," so he and the other students with Asperger's could do what they wanted.
The indoor-recess room is an enticing, colorful place with games, books, and activities. Last year, the Asperger's students were given the assignment of asking a regular student to join them in the indoor-recess room. The idea was to give them practice making social overtures.
Some parents, including T.J.'s mother, were nervous their children would be rejected. But the result was astonishing.
"At lunch every day, there would be T.J. sitting there surrounded by a group of kids lobbying to get asked," Jahn says. "I was so thrilled."
Brian Batzel, a
freshman at Ballard High School, high-fives instructional
assistant Christin Ellison-Oslin, after correctly finishing an
T.J. no longer has to ask classmates to join him in the room. It became so popular that teachers started allowing any pupil in the school the option of playing inside for recess. It is still an environment where the Asperger's students get to practice their social skills.
At nearby John Hay Elementary School, special education teacher Jeff Callahan says he feels like a movie director, with his Asperger's students as the actors.
He walks through the school with a clipboard listing each of his eight students' schedules, stopping to pull them out of class for special pep talks as if to give them motivation for the scene. He tells them to listen to the teacher, to have polite body language. The students, who are in grades 1-4, have visual cue cards with them reminding them of things like raising their hands before they speak, sitting still, and other appropriate behavior.
"How is your body doing?" Callahan asks Kevin Challoner, who has flopped down on his back in a beanbag chair while holding up a chair with four legs in the air above him. "Are you wrestling that chair? I think the chair is winning."
Kevin continues to hold up the chair and thrusts it into the air. Then he says, "I have too much extra energy."
With that acknowledgment, Kevin strolls down the hall with Callahan to the occupational-therapy room, a sort of classroom-cum-gymnasium. The room offers a tire swing, a trampoline, and other equipment. Kevin hoists himself up on the trampoline. He bounces up and down, methodically counting each jump with Callahan: "One. Two. Three."
He reaches 140, then leaps off.
"It's a new record," says Callahan. Kevin jumps up to give him a double "high five" with both hands in celebration. Job done, the two walk silently back to the Asperger's room. Kevin's extra energy has been channeled, and he can now focus on reading a book for another class, Callahan explains.
Batzel, with the
goggles perched on his brow, thrashes through a water polo
contest with nonautistic students.
"Kevin breaks my heart because he looks like a typical kid," Callahan says. "He is bright. People will look at him and not think something is wrong. Then they will find out something is wrong."
Another student, Lauren Frost, 9, is in the room when they get back. She used to scream out loud in class before she was enrolled in the program. Just now, she's working on spelling her vocabulary words.
"Lauren do you want me to brush your arms?" Callahan asks. He has a plastic brush that he gently drags across students' forearms as kind of a calming therapy.
"No, not right now," she says. The plastic brush was so popular that the teacher has even ordered them at the request of some parents for use at home.
Whenever the students complete a task, Callahan rewards them with a penny or stamp on their cards that list their daily assignments. Sometimes, he even lets the youngsters reach into the classroom's "treasure chest" to choose a small plastic toy or piece of candy. He also has a "sensory box" with more treats.
Callahan stops to give Lauren and Kevin a lesson on how to blow off steam. They sit in two chairs facing him as he sits.
"This is a relaxation technique you can do in class," he says. He looks at the two students and stops. "Lauren, show me your eyes, I need eye contact," he says patiently.
Goodfellow has Asperger's syndrome, a mild form of autism. Such
children are often intellectually gifted but socially restricted.
Seattle schools are trying to crack the shell.
Putting his hands on his stomach and chest, Callahan shows the two children a deep-breathing exercise.
Later, when Callahan sits down with Kevin next to the computer in the classroom to quiz him on a couple of chapters he read in a book, Kevin interrupts.
"I'd like to talk to you later if I could," the boy says. "I can hook you up with a much better printer than the one you have here. It would be much better."
Callahan stops and ponders this offer.
"OK, actually I'd love to get a better printer, and would be interested in talking to you about that," Callahan says. "But right now, you have to work on your reading, and then when you are done, we will pop some corn."
When Asperger's students reach middle school, the Seattle program's focus on conversational skills and appropriate behavior intensifies, with positive reinforcement other than candy and toys.
In one recent middle school class, the students play a game in which they go around the room and take turns saying a sentence of a story. Each new sentence is added onto the last one, making a complete narrative.
The object for the students is to listen carefully to what their peers say and come up with a related thought. At the end, the teacher praises the students for being creative and acting respectfully toward others who were speaking.
To help students in the program throughout the district with their interactions, a speech pathologist works with them. She teaches them about how to read other people's reactions. They also work on how to talk about what they did over the weekend. The Asperger's students sometimes do not know when to give another student a chance to respond, and cannot sense when someone is no longer interested in what they are saying.
Robert Goodfellow, 6,
has taken up juggling in lieu of tree-bark peeling, an earlier
pastime brought on by his Asperger's syndrome.
"I tell them, 'OK, we have talked about that enough today,' " says Cindy Nitz, a speech pathologist for the district. "I'll say, 'That's the end of that topic.' "
She says she finds such students' honesty refreshing, but worries they will offend someone accidentally.
"These kids don't have a filter in what they say," Nitz says. "At least with these kids, you never have to wonder what they are thinking, because they will flat out tell you."
She says some of her high schoolers begin to shun her visits.
"When one of my students wanted me to meet her at lunch and stop pulling her out of class because it was embarrassing, I knew my work was done," Nitz says.
By the time the students reach high school, they are, for the most part, spending most of their school time in their mainstream classes.
Since Seattle's program has been operating for only two years, there hasn't been enough time for students who started in elementary school to grow into high schoolers. The students in the program at high schools have mostly transferred from private schools, or have moved into the area from another school district.
"It will be really interesting to see a student's progress all the way through," says Dennis Nusbaum, who teaches in the Asperger's program at Ballard High School.
He sees his students a maximum of two periods a day. For these high school students, Nusbaum says he feels more like an ambassador than a teacher. He represents their interests to their other teachers—and even sometimes to their parents.
"There's one student who is really just not into the academic world," Nusbaum says. "I have to start preparing the parents now for that fact and start trying to steer him toward a vocational course."
Some of the high school students with Asberger's even start attending the annual meetings between administrators and their parents where the students' individualized education plans are drawn up. The IEPs are road maps for what educational services are needed to meet the needs and goals of the students.
One student, Scott Merrell, 17, says he feels comfortable that he will be attending a second senior year in high school next year before graduating. He, the teachers, and his parents agreed it would be best to spread out the rest of the course credits he needs for graduation, Merrell says.
Nusbaum says Merrell was doing so well that all those involved in the decision wanted to prolong his experience at Ballard High.
Merrell has many interests that he likes to spend time on, including studying about Winston Churchill. He looks forward to attending an upcoming International Churchill Society conference in San Diego.
Nusbaum says he knows many parents are hesitant about the idea of sending their children with Asperger's syndrome to a large public school. He says many first try an alternative-style private school, thinking that their children's eccentricities will be celebrated in such an environment rather than ridiculed.
But he says some find the opposite is true.
At a big school, the students have more latitude, Nusbaum points out. For example, if one science teacher isn't thrilled about teaching a student with Asperger's syndrome, another one might be eager to take on that challenge, he says.
The same is true of peers.
"At a school with a couple thousand kids," Nusbaum says, "almost anyone can find a friend."
Vol. 21, Issue 12, Pages 22-29Published in Print: November 21, 2001, as Cracking the Shell