A DONOR FAMILY

The Promise of Clay Bassett's Brain

By Jim Mulvaney

For more than a decade Mary and Marshall Bassett had raised their autistic child, concentrating on the latest therapies but not giving much thought to the root cause of the disease.

Like many parents they had delved into the science of the disease when Clay was first born. But there weren't many answers and so much to do on a daily basis they never really got back to it.

Most parents read what they can about autism in the beginning, when their child is first diagnosed. "Then you forget about the disease and just figure out how to deal with your child," Marshall Bassett says. "The causes of the disease had nothing to do with his daily reality. We buried our heads in the sand."

Clay Bassett died tragically and unexpectedly at age 14 and his parents did something they never imagined they would do: they donated their son's brain to a tissue bank and became key players in the emerging field of brain research.

"For all these years Clay was trapped by his brain, this brain that had failed him," Marshall said. "Maybe by donating the tissue we might be able to find out what was wrong."

Clay was first diagnosed with autism at age 2 and a half. The beautiful, seemingly healthy child had started life precociously, his first words coming early. Then he lapsed into an eerie silence and developed an overpowering interest in flickering the lights on and off and holding his hands under the faucet to savor the sensation of water running over his fingers.

The parents were not, by nature, "head in the sand" types. Marshall, a portfolio manager, had gone back to graduate school to prepare for a career in advanced finance. Mary Clay Bassett is a pharmacist. "Our goal was to make him functional," Marshall said. "The root of the disease didn't seem connected to our daily struggles."

In August, 1998, the family took a vacation in Algonquin National Park in Ontario and one day Clay and Marshall set off on a six-mile hike. "The first half was uphill, the second half down, it wasn't particularly exerting," Marshall said. "We were almost back to the car and he got dizzy and collapsed and went almost immediately into coma and died some hours later."

Because of Clay's age and the unusual nature of his death, an autopsy was ordered. A final finding on the cause of death is hyperthermia, despite the fact it was only 75 degrees the day of the hike. The pathologist in Ontario retained and preserved a large amount of tissue, including the child's brain.

Days later a friend gave the Bassetts a copy of a magazine story about the National Alliance for Autism Research (NAAR) and Marshall decided to get involved. "I contacted them immediately to get the tissue donated," Marshall said. "I hadn't realized before just how valuable Clay's brain might be."

The Bassetts donated Clay's brain tissue to the newly founded Autism Tissue Program, a joint effort between NAAR and the Autism Society of America Foundation, designed to go to the core of the mystery disease.

The Unknown Disease

As the autism community looks for drugs to help, the pharmaceutical companies ask which part we want to fix. We tell them we need to stop the tantrums, but we don't know what causes them; we want them to restart the speech, but we don't know why it stopped. We want to stop the compulsions, the repetitive behavior, the self-stimulation, the retreat into a world our autistic relatives occupy alone. The drug companies say politely that if we don't know which part is broken, they can't be of much help fixing the problem.

The key to brain research starts with examination of brain tissue. Over the last several decades, researchers have made extraordinary progress in figuring out how the brain works, how neurons shoot messages from one part of the brain to another, delivering instructions and retrieving memories. Almost everything we know about the normal function of the brain has come from the "natural experiments" that occur when people suffer brain injury. When a brain-injured person loses a particular function, researchers assume that the damaged area is involved in the lost function. Then they can test this hypothesis by creating the same injury in an animal brain to see whether the same function is lost.

Researchers say that by dissecting and studying the brains of autistic people they may be able to find physical clues to unlock the mystery. Is it a physical deficit in an area that controls speech? Is there miswiring in the elemental brain stem that would indicate the condition develops soon after conception? Are there links to seizures and other conditions common to people with autism or are they merely coincidental? Are the changes that take place in the brain over time help plot a course to a cause? New state of the art breakthroughs in neuroimaging allow scientists to peer directly into the brain and even study biochemical changes in discrete brain areas. The differences we see among autistic people raise questions of cause and effect that can only be answered using brain tissue.

Researchers also hope to link biological findings to behaviors. "What we want to do, over a long period of time is bring to the study of the brain a cleaver picture of what the person was like in life so we can relate the anatomy to the symptoms," said John Maltby, chair of the ASA Foundation.

In other words, there is hope that the Tissue Program will allow researchers to identify not just the specific genes or other conditions present deep inside the brains of people with autism, but which conditions create each specific type of behavior.

All parents who have spent countless midnight hours reciting the mantra "why, why, why," staring at the bedroom ceiling or licking their wounds after yet another explosive tantrum, will benefit from solid information.

"I donated his brain because I wanted something to come out of this horrible experience of having my 14-year old son die in my arms," Bassett said. "I hope that in five years I get a call from somebody who says we've made some breakthroughs and Clay's brain tissue was instrumental. That would be good. If the study of his brain helps spare parents and children what you and I and other's have gone through, that would be a wonderful thing."

Jim Mulvaney headed a team of reporters at the Orange County Register and won the 1996 Pulitzer Prize for Investigative reporting. A former foreign war correspondent, Jim now lives with his wife, the author Barbara Fischkin. They have two sons, Danny, who is autistic, and Jack.