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MY
LIFE WITH AUTISM: IMPLICATIONS FOR EDUCATORS
By Stephen Shore
The Autism Bomb and Preschool
After 18 months of normal development, I was hit with the "autism bomb,"
became nonverbal, and was diagnosed with "Atypical Development with
strong autistic tendencies and psychotic." The diagnosing professionals
considered me "too sick" to be treated on an outpatient basis and
recommended that I be institutionalized. However, my parents, refuting
their suggestions, supplied a crucial, home-based early intervention
program emphasizing sensory integration, music, movement, imitation and
narration -- all long before such service was formally conceived.
My mother would try to get me to imitate her, but to no avail. Finally,
she imitated me; and in doing so, I became aware of all within my
environment. The educational implication of this strategy is the
importance of meeting the student (whether on the autism spectrum or
not) where they are cognitively and developmentally before new material
can be learned. If that means flapping and rocking with the child until
they are aware of your presence, then that is what should be done before
moving on to other material. My parents had no psychological or
educational experience, but just did what good parents needed to do for
their child. Although I didn't start to regain verbal skills until age
four, with the help from my parents and later from teachers and
professionals, I am now completing my doctoral degree in special
education at Boston University, with a focus on helping autistic people
develop their capacities to the fullest extent possible.
At age four, after my parents finally convinced the school that
originally recommended I should be institutionalized to accept me, I
spent a year there before transitioning to a nursery school program.
Unfortunately, entering public school kindergarten at age six was an
academic and social disaster. Although I was in regular education, I
probably needed a program splitting my time between a special education
resource room and regular classroom with assistance from an aide.
Elementary School
During elementary school I was usually almost a grade behind in math and
reading. My first grade teacher told me that I would never be able to
learn mathematics -- but somehow, I managed to master the subject well
enough to teach statistics at the college level. Another teacher
informed my astonished parents that I had trouble reading, despite the
fact that I was reading the newspaper at home. Unlike educators of today
who focus on autistic students' strengths, my teachers never developed
math and reading lessons based on the foot-high stack of astronomy books
on my desk that I read and copied diagrams out of aat a furious pace.
Socialization was also very difficult due to the teasing and bullying of
children that are different that occurs in the public schools.
Fortunately, educational professionals now realize that bullying is a
behavior not to be tolerated, as opposed to a developmental phase that
children need to go through or experience.
Improperly understood, sensory integration dysfunction can severely
impede functioning in a classroom. For example, visual sensitivity to
fluorescent lights can make them appear like strobe lights to a person
with autism, creating an unsuitable environment for learning. An
elementary-school child in this situation may very well get out their
seat to shut off this source of sensory overload that, in addition to
being a distraction, may cause physical pain. I have seen the eyes of
people of those with sensory sensitivities vibrate in synchrony with the
60 Hz. cycling of fluorescent lighting. The teacher, unaware of the
student's condition may interpret this "out of seat" activity as an
avoidance behavior. However, in reality, this behavior is an attempt to
eliminate a sensory assault that interferes with functioning in class.
Alternatively, a child, more severely affected by autism, who is
nonverbal and less aware of the source of her sensory overload, may
simply have a tantrum.
Another challenge for many students with high-functioning autism and
Asperger Syndrome is literal interpretation of language. For example, in
the fourth grade I had a friend who told me that he "felt like a pizza."
Unable to understand the idiom, I thought that he meant that he looked
like a pizza and I tried to assure him that he didn't smell nor look
like this popular American food. Many years later in college, while
ruminating about this event, I finally understood that he felt like
eating a pizza.
Middle And High School
Middle and high school often overwhelm children on the autism spectrum
due to the increasing complexity of interpersonal relationships,
homework, and the act of transitioning between classrooms for different
courses. Students begin dating and there is increased emphasis on
conformity. Homework requirements from multiple courses demand proper
allocation of time. For those with visual-perceptual challenges, getting
from one classroom to another can be like walking through a maze. Some
accommodations for these children include working with an aide for
social interaction skills. Keeping a schedule detailing times and
location of classes, as well as due dates, for assignments can help with
getting students to classes and completing homework on time. The act of
writing as well as converting verbal information into words on paper
during a lecture is also a significant challenge. Providing outlines and
class notes are especially helpful, as they allow the student to focus
on processing the subject matter rather than frantically writing down
what is said in the lecture or copying overheads. In fact, to me,
accommodations are just extensions of good teaching practice. All
students can benefit from having a topical outline and class notes.
Fortunately, for me, middle and high school was actually better than
elementary because I was allowed to specialize in my favorite interests
of music and bicycles. Middle and high school student organizations can
provide a place where a child on the autism spectrum can use their
special interests to base their interactions with their classmates. For
example, I spent much time in the band room and started a bicycle club
with much success. My grades improved dramatically because I finally
figured out what teachers wanted from me in terms of schoolwork. In
addition, getting along with other students became easier because I
realized that socialization using words, rather than sound effects from
the environment was more efficient in communicating with other students.
However there was still a degree of bullying. For me, a social aide
during elementary school would have helped greatly in understanding my
teachers' expectations for quality schoolwork and meaningful
interactions with my classmates.
College
College, like for many people with high functioning autism and Asperger
Syndrome, was a sort of utopia. Gone was the ostracizing from the public
school cliches for failing to fit into what they determined as popular.
Instead I found people with similar interests. For example, if I wanted
to ride my bicycle at midnight, I could usually find another person in
this 25,000-student university to ride with me. Students interacted for
the pleasure of exchanging ideas and enjoying each other's company
rather than how "well" someone fit in.
Life Beyond School
At this time, I teach college-level special education courses where I
incorporate my personal experiences to help future teachers of people
with autism and other special needs. Finally, I serve on the board of
directors for several national organizations pertaining to autism such
as the Autism Society of America, Unlocking Autism, Asperger Syndrome
Coalition of the United States, and as Board President of the Asperger's
Association of New England.
In addition, I work with people on the autism spectrum using music and
computers. Depending on the severity of the autism, music may be used to
develop skills in socialization and communication, as well as gross and
fine motor control. Or, as outlined in detail in my book, Beyond The
Wall, I may actually teach them how to play an instrument. In addition
to working on motor and breath control, the child benefits greatly from
having a skill that can serve as an avenue for socialization.
Ongoing Educational Challenges
Some challenges that remain from my childhood diagnosis of autism
include accurate reading of nonverbal communication, subtle social
situations such as office politics, and facial recognition. It is
difficult for me to remember the faces of my students in class so I take
attendance at the beginning of every session in order to match the name
to the face of the person who answers. Additionally, taking notes in
fast-paced lectures remains a significant challenge. Instead of spending
a lot of time and energy improving my note-taking with only marginal
results, I devise my own accommodations, such as recording the lecture,
typing the lecture notes into a laptop, asking to see another student's
notes, or even asking the teacher for his or her lecture notes.
In summary, it is important for educators to realize that due to sensory
issues, people who are on the autism spectrum often perceive the
environment differently than most others. In addition, long-term
prognosis of people diagnosed with autism spectrum disorders is
difficult at best. While the effects of autism do not disappear, it is
possible through proper early intervention, support and education,
leading to self-awareness and accommodation to live successful lives.
The nonverbal, self-abusive, tantrumming toddler may become the child
that makes it through public school and high education to become an
independent, productive citizen leading a fulfilling life with merely
residual outwardly visible effects of the autism spectrum. Finally, as
with all humans, the possible achievement of those on the autism
spectrum is unlimited. The challenge is finding the key to unlock that
potential.
Editor's Note: To learn more about Stephen Shore's book, Beyond The
Wall, click here! |
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