A Tragic Opportunity
It couldn’t be! It was virtually impossible, wasn’t it? After years and years of bewilderment and endless searching to figure out what had robbed his son, Greg, of the ability to communicate and relate to others normally, David Garness realized he had finally found the answer. He frantically summoned his wife, Shirley, to the living room.
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.