NY Times- 11/5 -ASD and higher Education
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| Wed, 11-08-2006 - 10:29pm |
NY Times
November 5, 2006
A Dream Not Denied
Students on the Spectrum
By ABIGAIL SULLIVAN MOORE
VALERIE KAPLAN has an aptitude for math, and scored a perfect 1600 on
her SAT. When her high school classmates applauded the announcement at
lunch, she was pleased. But less obvious signals — a raised eyebrow or
impatient glance at a watch — elude her. In an advanced course at
Carnegie Mellon called “Building Virtual Worlds,” that problem caused
classmates to sideline her in group projects. And during a critical
meeting to win approval for her customized major, electronic art, she
intently circled the freckles on her arm with a marker.
Miss Kaplan’s behavioral quirks are agonizingly familiar to students
with an autism spectrum disorder. Simply put, their brains are wired
differently.
Children with classic autism have language delays or deficits and
difficulty relating to others; they display rigid, often obsessive
behaviors; deviation from routine disturbs them. Some are mentally
retarded. Those with milder conditions on the spectrum — Asperger’s is
one of them — exhibit some or all of these characteristics to lesser
degrees. But Asperger’s is also distinguished by average or above
average intelligence, an early acuity with language and singular
passions — Miss Kaplan, for example, has absorbed every detail of an
animated 90’s television series called “ReBoot.” People like Miss Kaplan
have a disability, but to others they can seem merely gifted, or
difficult, or odd.
Of course, high-functioning people on the spectrum have long attended
college. Tony Attwood , a psychologist and author of “The Complete Guide
to Asperger’s Syndrome,” tells of trying to spot the professor with
Asperger’s when he’s on the lecture circuit. That is, unless Dr. Attwood
is at an engineering school, in which case he tries to spot the
professors who don’t have Asperger’s.
A top expert estimates that one in every 150 children has some level of
spectrum disorder, a proportion believed to be rising steeply. With
earlier and better intervention, more of these children are considering
college, and parents, who have advanced them through each grade with
intensive therapies and unrelenting advocacy, are clamoring for the
support services to make that possible.
Finding suitable colleges for such students was a topic at the national
conference of the National Association for College Admission Counseling
in October. Last March, 89 college administrators from across the
country gathered to learn about support strategies at a conference
sponsored by the University of Connecticut School of Law and the Yale
Child Study Center. The director of the center, Dr. Fred Volkmar, helped
define autism and Asperger’s for the American Psychiatric Association in
the early 90’s. “Twenty- five years ago,” he says, “I would have been
stunned to learn that I was going to put together a conference on
colleges for these kids. Twenty-five years ago, the stereotype view was
that they were not very bright and not college material.”
His conference is further evidence of changes already rippling across
campuses as colleges scramble to figure out how to accommodate this new,
growing population of disabled students.
Community colleges are particularly unsettled. Scores of students are
turning up, hesitant about their ability to handle four years of
college. “Colleges call us all the time in a panic, and the calls are
increasing,” says Lorraine E. Wolf, clinical director of disability
services at Boston University and a consultant on the topic. “One
college had 20 students coming. It was a technical college in New Mexico.”
Unable to navigate social intricacies, many such students once decided
to forego college; or, isolated and depressed, they left before
graduating. They bring a host of tricky issues to classrooms, dorms and
the dating scene. “I can’t emphasize how difficult college is for these
kids,” says Dania Jekel , executive director of the Asperger’s
Association of New England. “Many are going to college and they really
aren’t ready. We’ve had cases where a parent hasn’t known for an entire
semester that the kid hasn’t attended class and is flunking every class.”
Ms. Jekel worries about exposing inherently naïve students, who are as
sexual as the next college student, to the complexities of dating. Women
on the spectrum are especially vulnerable sexually and emotionally,
since they have problems deciphering intentions. Men are at risk, too,
misreading clear signals of rejection (“I’m busy”); instead, they might
pursue a romance until a confrontation results.
Some assume conventional learning-disability programs will do for such
students. But that’s a mistake, experts say. Students on the spectrum
need help chopping course loads into manageable bites. They need to
learn how to act appropriately in class — correcting professors or
asking too many questions are common gaffes. They also need support with
ticklish social issues like roommates who complain they are too messy or
who lock them out when a date stays overnight.
“That’s a little bit different from what administrators normally do,”
says Richard Allegra , director of professional development for the
Association on Higher Education and Disability. “If a blind student
needs books in Braille, they know how to do that.”
Most advisers just don’t have the training or the time to shepherd
students with cognitive disabilities. One student at the Massachusetts
Institute of Technology tells of being assigned, because of a family
connection, to a freshman adviser whose son had Asperger’s. “He met with
me weekly,” says the student, Richard, who describes his Asperger’s as
mild and asked that his last name be omitted for fear of being
stigmatized. “It helped keep me on track,” he says. “He would just light
a fire under you once in a while.” Sophomore year he had a different
adviser, one who was not personally invested. Meetings dwindled to
monthly or less. Richard’s grades dropped as he stayed up late into the
night roaming the Internet and procrastinating. “I was just not getting
the work done,” he says.
Colleges are devising programs that try to integrate students on the
spectrum into the academic and social fabric of the campus. The Essex
campus of the Community College of Baltimore County, in a joint program
with a state agency and a local school, has hired a special-education
teacher to help students organize their time and assignments and improve
the skills that are second nature to most, like how much space goes
between two people in a conversation or how to make gentle eye contact.
At Keene State College, in New Hampshire, fellow students act as “social
navigators.” Their assignment: change their charges’ “outsider” status
by introducing them to their friends. The mentors get $10 an hour (and
sometimes course credit in psychology) by helping students on the
spectrum make small talk, date and get consent at every level of
romantic advancement. For example, says Larry Welkowitz , who helped
create the program: “Would it be O.K. if I asked you out on a date?”
“Would it be O.K. if I kissed you?” Some 50 undergraduates have
participated in the program, which Professor Welkowitz calls “the single
best intervention _ I just know it because of how I have seen their
lives change.” In turn, he says, the mentors develop new understanding.
“We’re learning about ourselves,” Professor Welkowitz says. “A lot of us
have a dash of autism.”
At Marshall University, the West Virginia Autism Training Center
operates a program in which graduate students work daily with students
with Asperger’s, reviewing assignments, helping with time management and
teaching classroom etiquette. They take the students on field trips to
Wal-Mart, to restaurants and to the movie theater to let them practice
social skills. Bottom line for parents: $6,200 a year.
Colleges are legally required to ensure equal opportunity for
academically qualified students. Accepted adjustments include
note-takers, extra time for tests (often in distraction-free settings),
and single dorm rooms for students for whom normal noise or the flicker
of a fluorescent light amounts to sensory overload. Social skills
training, however, is assistance of a personal nature. “It’s very much
parallel to what we’ve seen happen with attention deficit disorder and
some learning disabilities,” says Ruth Bork , dean of the Disability
Resource Center at Northeastern University in Boston. “It’s above and
beyond what’s considered to be appropriate support at the college level.”
Complicating the situation is a scarcity of data on best practices in a
college environment. Jane Thierfeld Brown , director of student support
services at the University of Connecticut School of Law, is helping to
create a pilot program for the University of Minnesota and Boston
University that will assess its own success rate. “Once we can prove the
program increases the students’ graduation and retention rates,” she
says, “it can be replicated at other colleges.”
Lisa King , a disability specialist with the Minnesota program, is
working now with eight students. She recalls one who was so unnerved by
the crowds of strangers at the dining halls that he subsisted largely on
junk food from vending machines. Though hungry and sick of chips and
pop, he didn’t change his behavior. Eventually his mother called Mrs.
King, who walked the boy through a series of trips to the university
food court. The first foray was over spring break. “There was not a lot
of activity and it felt nice,” he says now. “It was good to eat an
actual good meal.” Successful trips followed during busier times. He
also got help figuring out the bus route from home and around campus.
“It was a matter of knowing where it stops and how often it comes,” he
says. “Now I do it myself. It makes me feel independent. All I need is a
run-through.”
Mrs. King sees these interventions as “the minimum that we can do” for
academically qualified students. Musing, she takes it a step further:
“We would provide an interpreter to a hard-of-hearing person. Why don’t
we provide an interpreter for somebody with Asperger’s?” And that’s not
far from what some parents are seeking. One mother wanted her son to
have 24/7 access to all staff and faculty, says Barbara Roberts, manager
of M.I.T.’s disability services; the request was denied. Families of
more capable students hire coaches — psychologists, speech therapists,
specialed teachers and graduate students — for fees ranging from $30 to
$100 an hour.
Because of her mother’s perseverance, Miss Kaplan spent her last two
years at Carnegie Mellon living near campus with a coach, who helped her
organize her work, buy groceries, keep her room clean. “It was the
answer to a prayer,” says her mother, Jan Kaplan, who watched her
daughter flounder during sophomore year, trying to pick a major. Miss
Kaplan eventually came home for a year. Testing led to a diagnosis of
Asperger’s.
The coach, Carolyn K. Hare, a former special-education teacher for
autistic students, went on to create Aheadd (Achieving in Higher
Education With Autism/ Developmental Disabilities), which provides
services at the University of Pittsburgh and, beginning in the spring,
at George Mason in Arlington, Va. This fall at Carnegie Mellon, Ms. Hare
is working with seven students. Aheadd charges $7,000 a year, with some
need-based scholarships available through Carnegie Mellon.
“The Asperger’s population is much bigger than we think it is,”
according to Larry Powell, manager of disability services at Carnegie
Mellon. “But students aren’t disclosing that. It’s kind of like, if you
build it they will come. If we could put together systems that would
adequately support these students, word would get around and more
students would disclose it and would come. One of my issues is that I am
an office of one with 264 students.”
Miss Kaplan graduated from Carnegie Mellon in 2005. Her experience with
“Building Virtual Worlds” led her to a new strategy for social
interactions. Randy Pausch, the course’s teacher, noticed what Miss
Kaplan did not: that her classmates were working around her instead of
with her on group assignments. When he found out why, he encouraged her
to explain her cognitive difficulties to her teammates and ask them to
be direct about what they wanted her to do. Dr. Pausch says the results
were beneficial not just to Miss Kaplan but to the others. “They found a
way to work with someone who opened up to them about something that was
very embarrassing,” he says. “Once she puts that on the table, what else
can anyone feel embarrassed about having to divulge?”
Now managing a Games Unlimited store in Pittsburgh, Miss Kaplan still
uses his method. “Tell me flat out if I need to do something different,”
she says to her supervisor. Her career goal is to make video games or
work for DreamWorks (but only after “Shrek 3” is released — she wants to
be surprised).
Though no longer a student, Miss Kaplan belongs to a student
organization called the K.G.B., a swipe at the Cold War secret police.
The acronym does not, she says, stand for “Keep Geeks Busy.” An
on-campus variation of capture the flag is one of its signature
activities. Surrounded by a self-described “eccentric bunch of nerds,
geeks, freaks, visionaries, outcasts,” Miss Kaplan says, she feels
perfectly comfortable.
ASPERGER’S FACT SHEET
Jane Thierfeld Brown , director of student services at the University of
Connecticut School of Law and mother of an autistic child, helps
colleges set up programs for students with autism spectrum disorders.
The fact sheet she distributes to faculty members about Asperger’s
includes the following points.
TYPICAL SYMPTOMS
Poor eye contact
Inappropriate social interaction
Unusually strong, narrow interests
Above-average to superior intellect
Lack of voice intonation
Impulsiveness
Literal, concrete thinking patterns
CLASSROOM BEHAVIOR
Attempt to monopolize conversation
Go off on tangents when answering questions
Are distracted in long classes
Engage in self-stimulating behavior
(rocking, tapping, playing with “stress toys”)
Are argumentative
STRATEGIES
Break during class, particularly for movement
Redirect responses to bring student to the point

thank you so much for posting this article.
Christie
Colleges seem to be ahead of the game. I have looked into college programs for HFA and Asperger's. I found that the college where I graduated has a special program for HFA and Asperger's. They will help these students keep track of homework assignments and get assistance writing papers. I can see my son needing help with essay writing because language arts is a weakness for him. Entrance to the program requires a prior diagnosis of HFA or Asperger's. This is the one of the main reasons that I recently got an official diagnosis.
The article left off aggression as a trait. This is the problem I'm having with my second grader and because of agression he is being pushed out of grade school. I still hold out hope for college.
You took words out of my mouth. Yes, aggression is a major problem for Asperger kids. Even though college is too far, time flies. Another major area to worry about. Thank you for the article.
- Anandhi