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As he continued to thumb through a February
2000 issue of Scientific American magazine, a cold sweat crept over
him as the realization sunk in.
When Shirley entered the room, David
held up the magazine that finally held the key to all the years
of confusion and pointed to an article entitled "The Early Origins
of Autism" by Dr. Patricia Rodier. Suddenly, all the difficulties
of the past 31 years flooded his mind like water breaking through
a dam. He finally knew the answers to the many questions that had
haunted him and his wife for so many decades. Their son Greg, now
an adult in his thirties, was no longer an enigma. For the first
time, David and Shirley Garness finally understood the cause of
their son's often unusual and isolating behavior.
Unfortunately, the answers came too late
for Greg Paul Garness and his family. The realization that Greg
had autism didn't come in time to invoke the community supports
that Greg needed to save him. Instead, in mid-April of the same
year, an event which forever changed the lives of Greg and the Garness
family came to pass.
April 17th, 2000 had great meaning
in the mind of Greg Garness. The calendar where he diligently kept
and chronicled the weather contained an unusual entry. Written squarely
across the top in a heavy rough scrawl, Greg noted "Liz Breakup".
Across the bottom of the date he wrote "Judgment Day". The next
day, however, ten years after the breakup of his only truly romantic
relationship, Greg Garness lay dead in the middle of a busy Anchorage,
Alaska intersection. He was shot by police who were seemingly given
no alternative but to end his life.
The events of that day left many unanswered
questions not only for the Garness family, but also for the community
that considered Greg peculiar due to his social isolation and, at
times, eccentric behavior. However, the events of April 18th may
also some day result in providing solutions for others affected
by autism. It may even be the day that establishes explanations
for researchers about the many unknown facets of the puzzling disorder
of autism.
After the tragic end to their son's life,
Shirley and David Garness truly realized that Greg had a disorder
that drove him to react the way he had. They also recognized that
autism was the reason for Greg's extreme impulsivity that day. But
they wanted their newfound knowledge to help change the lives of
others. The Garness family then made a monumental decision to assist
others affected by autism. Greg's parents decided to participate
in the Autism Tissue Program and to donate Greg's brain tissue in
order to assist with vital neurological, developmental and genetic
studies on autism.
When the Garness family contacted the
Autism Tissue Program, the first step was to determine whether or
not Greg truly had autism. The determination of an autism diagnosis
was made using the ADI-R (Autism Diagnostic Interview—Revised).
Throughout the interview, the Garness family related a great number
of examples of autistic behavior throughout Greg's life. For example,
his parents recalled him engaging in many repetitive behaviors as
a child, including continuously lining up his army men in long rows.
Greg also followed many specific routines such as waking up and
listening to the radio for specific programs every night. Additionally,
unusual sensory interests were also related. As both a child and
an adult, Greg would fill all of the sinks and tubs in the house
with water and then stare at the water while he flapped his hands.
He would engage in this for up to an hour at a time. This behavior
became so problematic that Mr. and Mrs. Garness had to refinish
their kitchen cabinets twice due to water damage.
The Garness family also related many
examples of Greg's circumscribed interests which were evident throughout
his life, but became more intense when he became an adult. Most
prominent was his strong interest in the weather, which, according
to his parents, accounted for "90% of his conversation." For years
he had created calendars that tracked daily weather conditions.
He had also kept a journal of barometric pressure and wind-flow
patterns. Even as an adult, he insisted on watching specific weather
reports every night. Greg also insisted on organizing certain rooms
in the house. He would become quite upset and distressed if anyone
attempted to rearrange them.
After the many accounts of behavior related
by the Garness family, researchers were convinced that Greg Garness
did indeed have autism. Even though the diagnosis was made posthumously,
the Garness family was allowed to make an important donation to
research by donating tissue to The Autism Tissue Program.
One of the most necessary components
of ongoing autism research studies is The Autism Tissue Program
(ATP). The program is a joint effort of the National Alliance for
Autism Research (NAAR), the Autism Society of America Foundation
(ASA), and the M.I.N.D Institute. In 1998, the ATP initiated a national
campaign to work with advocates in ASA chapters and other organizations
by notifying potential donors and their families of the importance
of brain tissue donations.
Additionally, the program continues providing
support to families making such difficult decisions. In the past,
the sensitive nature of the subject of tissue donation often resulted
in delayed decisions by families who wanted to assist with the program.
As such, the ATP is now working much harder to insure that individuals
and their loved ones with autism can make appropriate choices prior
to a tragedy or other event where tissue donation is an option.
Not only does the Garness family want
to increase awareness of the Autism Tissue Program, they also want
to encourage awareness of autistic spectrum disorders. They feel
awareness is the key and the most important step in understanding
these neurological disorders. Since Greg's inability to adapt drove
him to years of alcohol abuse, in hindsight his parents wonder if
addressing the real diagnosis would have changed Greg's fate. That
question may some day be answered with the results of studies conducted
by the ATP. Even though the answer will not bring back the son who
loved to fish and help in the family business, it may eventually
assist others with answers to similar questions.
Additionally, by utilizing Greg's story,
the Garness family also hopes to bring attention to the lack of
training for "First Responder Personnel" in similar situations.
"First Responder Personnel" include police officers, firefighters,
and emergency medical technicians who need to have a better understanding
of autistic spectrum disorders. While no one will ever know if that
training might have changed the outcome that day for Greg Garness,
it might have allowed the use of alternative procedures. Those procedures
are generally not used by police officers in circumstances such
as Greg's. When Greg walked into the busy Anchorage intersection
making obscene gestures to motorists and goading them to strike
him, the police response (had they had specific training regarding
autism) might have been quite different. First responders such as
police officers might have handled the situation in a unique manner
if they had known Greg had autism and if they had received specialized
training to help them deal with individuals affected by autism.
Since officers in Anchorage had not received
any specialized training, it is possible that police felt they were
dealing with a dangerous offender that day. Greg did have a history
of prior negative contacts with the police. He had attempted suicide
in 1998 and had also previously assaulted an officer. However, the
Garness family questions how much the interaction with the police
on that particular day influenced Greg's reactions and the officer's
response. Records indicate that police were aware that a person
was acting strangely; however, the Garness family feels that trained
professionals would have been on guard in such a situation. Unfortunately,
officers approached Greg and when they requested identification
from him, he began to threaten them. The confrontation ended when
Greg stood on top of the patrol vehicle, waving a gun erratically.
When he didn't respond to a verbal request to drop the weapon and
instead leveled the gun at officers, police had no choice but to
use deadly force.
Although Shirley and David Garness will
probably never have all of their questions answered regarding their
son's tragic death, their participation in the Autism Tissue Program
as well as sharing their story with others is an attempt to make
a positive impact out of a tragedy. They hope their story will encourage
others to participate in research programs. They also wish to greatly
increase the public's awareness of autistic spectrum disorders.
The Garness family continues to pray that this tragic event in their
lives will remain an opportunity to assist many others.
Written by Marianna Bond, Chapter President
of the Autism Society of Greater Tarrant County in Texas with Carolyn
Gammicchia, Chapter Vice-President of the Autism Society of Macomb
and St. Clair Counties in Michigan.
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