Educating About Autism

Within six months of the birth of her second son, Joseph, in 1957, Helen Green Allison ’44 recognized that something was different. By the time he was three, Joseph smashed the windows and wrecked the furniture of the north London home he shared with his mother, father, and older brother Miles. “I knew Joe had autism before the professionals did,” Allison says.

“It took convincing them in those days. Parents of people with autism often made the diagnosis.” Yet according to professional opinion parents were thought to be the cause of a child’s autism, and psychoanalysis or institutionalization were the only treatment options commonly available. “I was terribly ethical. I wasn’t going to let Joe be put in a facility. I just boarded up another window and carried on.”

Allison, who went to Oxford as a Fulbright Scholar in 1952 to study Oriental languages and later married a medical student she met there, knew there must be parents in the U.K. eager to connect with other parents of children with autism. “The U.S. had several groups; one in Long Island I remembered reading about. I thought, ‘If they can do it, we can do it,’” she recalls. Unsure of how to publicize her efforts and gather interested parents, Allison made a broadcast on the BBC program Woman’s Hour and drummed up interest among parents she met through the Society for Mentally Handicapped Children. “It was hard work convincing people that a separate society for children with autism was needed, and that it should not just serve as a pressure group, but should found its own schools.” But dedicated parents did emerge, meeting in the back room of Allison’s home to form, in 1962, what is now the National Autistic Society (NAS). Allison carried on as secretary of the society until 1968, but she served on committees and on the NAS council well into the ’90s and became lifetime vice president in 2000. Today the NAS has 44 branches and runs 15 schools and 30 adult centers for people with autism in the U.K.

Around the same time as the society’s founding, Allison met Sybil Elgar, a teacher working with mentally handicapped children. “Sybil wanted to begin teaching autistic children. She had given her name to three doctors who diagnosed autistic children, and none responded to her idea. So I said, ‘That’s it; you can teach my son.’” So Allison would drive her son from psychoanalysis in the mornings to learn with Elgar in the afternoons. Patronized by professionals because of her working-class London accent and her Montessori diploma, Elgar “was doing exactly the right things, which were totally counter to everyone’s beliefs,” Allison says. “Permissiveness was believed to be right in the day; Sybil believed in structure. I realized this woman was way ahead of everyone.” Thus Elgar became the first principal of the first school for children with autism in the U.K. Soon other parents enrolled their children in the school, other teachers joined the staff, and the school began to offer a boarding option. “Sybil was a pioneer,” Allison says. “She saved Joe’s life. So many parents owe her so much.” A second specialist school was established shortly afterward in Kent, England, renamed the Helen Allison School upon her retirement as NAS secretary in 1968.

Allison received an even higher honor, when, on her 83rd birthday, she received from Her Majesty the Queen an honorary Member of the Most Excellent Order of the British Empire for her efforts on behalf of autism support and education in the U.K. “Helen has been a driving force in improving the chances for children with autism, children who once would have been labeled ‘ineducable,’” said Sir Nigel Crisp, chief executive of Britain’s National Health Service, in his remarks during the award ceremony.

Allison now lives in Bath, near son Miles, a physician in Wales, and Joseph, who resides in Somerset Court, a community center in the West Country for adults with autism founded by Allison and other parents in 1974.

Despite her impressive career in autism advocacy, Allison insists that her motivation came simply from the “practicalities” of learning how to care for and educate an autistic child. “Autism is a very complex handicap, which comes in different varieties. It can be difficult for people to understand. The parents I worked with became lifelong friends.”