Jane Taylor McDonnell eagerly waited for her son, Paul, to say mama, dada and other early words. But the words didn’t come.
In 1973 McDonnell, an assistant professor of English at Carleton College here, dreamed of her son speaking and babbling to his teddy bear in his crib. But then she awoke in a cold sweat, knowing it was only a dream.
By the time Paul spoke his first few words at age 2 1/2, McDonnell and her husband, Jim, knew something was wrong. Paul was so different from other children. He said little but was fascinated by lights and light switches. He was compulsive and hated even minor changes in routine, which might prompt tantrums.
During sing-along time at nursery school, Paul turned his back on the group and stared into space. When encouraged to join a clapping game, he twisted away, ran into the restroom and began flushing toilets, a favorite pastime.
Doctors didn’t know what was wrong. One suggested McDonnell was an emotionally rejecting mother, a hypothesis she would hear again and again. Some doctors suggested mental retardation or a hearing problem.
The diagnosis of autism was considered and rejected because Paul was considered too bright and at times sociable and loving.
It wasn’t until around the time Paul started kindergarten he was proclaimed “autistic-like.” It was a vague diagnosis, and it was unclear what it meant for Paul and his future.
“The early part of the difficulty was struggling with trying to find a diagnosis, trying to check out my own instincts against professional knowledge,” says McDonnell, 54. “We were constantly baffled and coming up short. Not having a diagnosis, we had no clear course of action.”
That left McDonnell to struggle on her own against the guilt and feeling of helplessness. It would be years before clues to Paul’s problems would lead to a point of clarity and hope.
During a family sabbatical to England when Paul was 3, it dawned on her that capacity for language and social learning was life’s most fundamental privilege, one that was in some way denied her son. “When I saw all those Cockney children in a London slum, arguing and playing with a football, I began to see them as having a privilege that Paul didn’t have.
“I could read to him, spend time with him, but I couldn’t restore something that appeared to be gone.” Other parents took their children’s ability to communicate and play with other children for granted. Paul often stood apart, rejecting other children or spurned by them.
Meanwhile, disagreements on handling Paul strained the McDonnells’ marriage. She thought her husband was too harsh, and he found her too coddling. “All of this was dividing Jim and me. We would vary between support and loving concern for each other and anger and bafflement, almost terror. I think our worst sides came out whenever we were frightened.”
While McDonnell searched for answers, suitable doctors and nursery schools, Jim, also an English professor at Carleton College, at times retreated into his work, she says.
Then McDonnell became pregnant again. Having suffered several miscarriages, she was hospitalized to manage the pregnancy. Doctors prescribed alcohol and tranquilizers in controlled quantities to arrest the symptoms of premature labor.
Her second child, Kate, also showed developmental delays, with sitting up, crawling and walking. She was diagnosed with mild cerebral palsy.
“I was now the mother of two damaged children, and I began to think of myself as different, set apart,” McDonnell says.
In the evening, she would play with the children, read them stories and get the housework done, but she would frequently do these things while drinking alcohol.
“It was as if I would flip a sign down in front of my eyes and say, `Closed for the day. I’m off duty now. I don’t want to feel all this stress and anxiety and have to go on coping.’ “
Although neither of the children’s disabilities was found to be caused by alcohol, McDonnell wondered as the dangers of maternal alcohol use became known.
“Neither child showed any sign of fetal alcohol syndrome or fetal alcohol effect, but obviously this was a source of tremendous guilt for me, and the worse I felt, the more I went under.”
McDonnell, who taught English, felt perhaps more than the usual conflicts between work and family.
“I seemed to have two absolute and conflicting demands in my life. Whenever I was on campus and teaching, I was neglecting my children, and whenever I was with my family, I felt I was neglecting my work.
“I was the first generation of the current women’s movement. I think because of that we felt the conflicts more keenly and were forbidden to talk about them, in a way. I do believe that if my children had been developing normally, I wouldn’t have felt the same pressures.”
Paul had started school and spent some time in regular classrooms despite his disability. But his schoolmates often taunted him and called him “retard.”
He had an especially hard time entering 2nd grade. “He was totally out of control. He was suffering in a major way. Kate was just turning 3 and with her own development delays. It was a really down period.”
McDonnell underwent alcoholism treatment. In the same period, she learned that she had been denied tenure at Carleton College and Jim was briefly hospitalized following a mental breakdown.
“It was an absolute crisis for me . . . the point at which everything was so awful I had to choose survival, and I did.”
“One large piece was not having a mind clouded by chemicals,” she says. She attended a 12-step program and formed an informal support group with a group of close friends who were also recovering substance abusers. They facetiously referred to themselves as the Northfield Lady Drunks.
That year, 1979, was exceptionally difficult. “But the first major discovery I made was that I would not die of that pain.”
Things slowly improved. Paul made a close friend. The family gradually connected with a progressive community of professionals and families in the Minneapolis-St. Paul area.
“When we got a diagnosis, the main thing was it put us in touch with professionals in the Twin Cities who have sustained us ever since. They were far ahead of the rest of the country in thinking about autism. Whereas most people were saying the only way to treat it was with behavior modification, they thought autistics could be trained, because they are very excellent rote learners.”
After being denied tenure, she left the English department and received a new appointment to teach and direct a new program in women’s studies at Carleton.
“So there was a sense in which I got a new chance in my career,” she says. The program then received a federal education grant that enabled McDonnell to bring in prominent teachers and lecturers. “And I started to publish articles, so my own professional life was moving forward.”
“Also what saved me was that Paul was always a very interesting and, in many ways, a very inventive child. So one of the things that helped us was the pleasure we took in him.”
McDonnell has learned that Paul has what is known as high-functioning autism. It remains a little-understood disability, but recent theories suggest it stems from a neurological problem.
“The new findings . . . confirm some suspicions I have always had, that the condition is at least partly explained as a sensory dysfunction. However, the real tragedy is that a whole generation and more of medical research wasn’t done because so many professionals believed the psychogenic model of autism as caused by environment, specifically by `bad mothering.’ “
Paul was able to continue attending public school, receiving special help. There continued to be rough times, and Paul suffered from depression for a time as a teenager. Now 21, he attends classes at a community college, drives a car and has a girlfriend.
“He does the things most people his age do, but he does them with more effort and more deliberation,” McDonnell says.
McDonnell has written a book about her experiences, “News from the Border: A Mother’s Memoir of Her Autistic Son” (Ticknor & Fields, $21.95).
McDonnell and her husband, 56, continue to work at Carleton College, where McDonnell remains a senior lecturer in women’s studies.
And they have learned to work together.
“What was a liability has become a strength in our relationship. We have two different views of reality. We were always fighting over that. Now that we see our differences better we are able to complement each other.”
