Being labelled ‘subnormal’ can blight a child for life. But Catriona Wrottesley meets two extraordinary people who overcame their diagnoses and found success as adults
Wendy Lawson’s earliest memories include hearing a professional tell her mother: “Your child is intellectually subnormal.” Later, schizophrenia was diagnosed. Kamran Nazeer, meanwhile, was told that he was autistic at 4.
Now Lawson, 54, is a psychotherapist and author who lectures around the world and Nazeer, 28, is a Whitehall policy adviser who has just published his first book. The stories they tell question the way we give children medical labels that can dictate the rest of their lives.
As a toddler Lawson was too young to understand the meaning of the diagnosis. But, sensing its importance, she tucked it away inside. Throughout childhood, whenever she heard the Beatles’ Yellow Submarine, the word “subnormal” came to mind. “I thought ‘Maybe I’m like a submarine. Perhaps I live a sunken life’.”
At school she was considered slow and difficult. “I was often in trouble. But I thought that it was everybody else who was strange, so I was waiting for them to become normal. Their games made no sense. Why put dolly’s clothes on, only to take them off again?” Her teenage years were no happier. “I got bullied for acting strangely. I’d talk out loud to myself, trying to make sense of things. I felt terrified and isolated because I didn’t know how I was supposed to act.” At 17, she received another label: schizophrenia. “I couldn’t see a future for myself so I attempted suicide and got taken to a psychiatrist. He asked if I could hear voices. Being literal-minded, I thought that he meant other people’s voices, and said yes. He took that to mean that I was having auditory hallucinations.”
Lawson married at the age of 20, but after 19 years, during which she had four children, she divorced and is now in a gay relationship. “Officially Beatrice and I have been together 15 years, since I divorced, but she’s been part of my life for 22 years. She awakened a world of connection and feeling inside me.”
Beatrice Kurmann looked after Lawson’s children and supported her financially when she returned to secondary school at the age of 38 to get qualifications. “I wanted to go to university to discover if I could have a job writing or lecturing. I’d always loved books. Once, at university, I was described as ‘clever’. It was a wonderful feeling.”
Finally, in 1994 at the age of 42, Lawson was told that she had Asperger’s syndrome, a weaker form of autism that is marked by problems in communicating and forming relationships. People with Asperger’s syndrome often have narrow obsessional interests and may be above average intelligence. About 211,000 people in Britain have a diagnosis of it.
This time diagnosis brought relief — it’s only fair to point out here that diagnosis has, of course, improved considerably since the 1950s — because it helped Lawson to understand her difficulties and find ways of adapting. Now she is a qualified social worker and counsellor. She has written six books. Her latest, just published, is Friendships: The Aspie Way (Jessica Kingsley, £12.99). It explores how to make good relationships and is relevant to people both on and off the autistic spectrum. She lives in Britain half the year, in Australia the other half. Her university degrees include a first-class honours in social work and she is studying for a PhD in psychology.
Passionate about speaking up for children and adults who have been written off, Lawson is in demand as a lecturer, with bookings in the UK, Singapore and Canada. “I have had moments of anger over the misdiagnosis, mainly because I’ve lost so much time. But a friend pointed out that if I hold on to anger, I’ll lose more. I want to work hard now, to use my time constructively to educate others.”
So, is it wrong to label children? “Yes,” says Dr Abraham Brafman, a child psychologist and the author of Can You Help Me? A Guide for Parents (Karnac, £9.99). “But it may be what parents need to survive because of the way we are wired. We’re better at dealing with certainties than with uncertainties and doubts. But the problem is that certainties can prevent change.”
It’s the misuse of labels that is a problem, argues Dr Peter Congdon, a psychologist, of the Gifted Children’s Information Centre, in Solihull. “Many children are condemned as intellectually slow, who, in fact, have a specific learning difficulty. Correct labelling and early intervention can cure a learning difficulty but a sympathetic approach is necessary.”
But being written off is all too common. Children who struggle academically, for whatever reason, are often bypassed in schools, says Professor John Bynner, of the Institute of Education, in London. He fears that this is a growing trend because of the pressure on schools to produce results. “It’s in the interest of teachers and schools not to spend a lot of time with children predicted to be poor achievers,” he says. “If a child performs poorly in tests, teachers lose interest. They add to this predicted failure path, not by actively working against the child, but by not giving them encouragement or support.”
Personality is very important in overcoming predicted failure. “I don’t give up easily,” Lawson says. “Tell me that I can’t do something and I’m determined to show I can.”
Like Lawson, Nazeer received a label at the age of 4, when autism was diagnosed. “I didn’t speak until I was 5. I was silent, wrapped up in myself. I’d slide on floors into walls and not notice that I bruised myself.” But unlike Lawson, Nazeer’s parents, who were originally from Pakistan, had high expectations. He believes it is this, and his experience in an experimental school in New York with a dozen other children labelled as autistic, which helped him to overcome early difficulties.
“My parents tell how when they put me to sleep in my cot they’d give me old newspapers and sheets of computer printouts to tear up. I’d spread them around me, lie down and go to sleep. To me, that story embodies the way they were trying hard to deal with it imaginatively. My father, a banker, could afford to send me to a good school where I got help from empathic teachers, therapists and psychiatrists. My own efforts and persistence also helped.”
The school used a variety of experimental approaches. It had strict timetables that the children knew about but which would sometimes be changed slightly to encourage the children to adapt and become more flexible. Nazeer says this was done gently. The children were encouraged to engage in “parallel play”, when they joined in certain games with certain partners, and would then swap the games and partners, again to encourage more flexibility.
The teachers worked a lot with facial expressions, teaching how to tell what a person was feeling from how they looked, and used flashcards to teach the children to talk. It seems to have worked for Nazeer. He has a law degree from Glasgow University, a PhD from Cambridge in legal philosophy. He has published many essays and short stories, and now his first book, Send in the Idiots (Bloomsbury, £12.99), about his experience at the school in New York. He still remembers how obsessive he used to be. “I was the child who always had to sit exactly on the white stripe on the rug.”
His book describes how the lives of four of his classmates turned out: Craig is a political speechwriter in Washington who still finds it impossible to make eye contact; Andre is a computer engineer who communicates through hand puppets; Randall is a bicycle courier; and Elizabeth committed suicide. “Before tracking them down, I’d worried in case nobody had got better and I’d have to write something bleak and miserable,” he says. “I thought I’d feel survivor guilt. But it didn’t turn out that way. Everybody had made progress. Finding out about Elizabeth’s death was a shock but her parents wanted to celebrate her life, not treat it as tragic. Much less about myself went into the book than I’d expected, though, because my classmates’ difficulties seemed more interesting, significant and profound.”
Nazeer became a Whitehall policy adviser, having applied to the Civil Service after completing his PhD and being put on to a fast-stream scheme. So was his diagnosis mistaken? “I prefer to say that I developed out of it. I’m lucky. I don’t think it shows much in how I behave, though a few residues remain. For example, I’ll focus on a paperclip to prevent myself from being overwhelmed by what’s going on around. I’m lucky, too, in that it has never felt like a stigma.” He even says he is glad that he’s not “cured” completely. “Because I find it difficult meeting new people, I’ve had to make an effort and I can engage with people quite well.”
Labels don’t have to determine our futures, he adds. “Kids with autism do get better, although at different rates. Perhaps they’ll never fully emerge into complete functionality, but don’t assume that their difficulties are categorical and for ever. Change is possible.”
What is autism?
# The condition was first identified in 1943 by the Austrian doctor Leo Kanner. He described autism as a disorder of “fascinating peculiarities” in his first paper.
# Autism is a brain disorder that makes it hard for people to communicate and to relate to others.
# There are different degrees of autism, hence it is known as a spectrum disorder. At the “higher-functioning” end is Asperger’s syndrome, a condition where sufferers tend to have average or above-average IQ. Further down the spectrum is autism and severe autism, which is often accompanied with learning disabilities.
# The National Autistic Society estimates that autism spectrum disorders affect 535,000 people in the UK.
# 40 per cent of children with autism wait at least three years for a clear diagnosis, according to the National Autistic Society.
# Although there was a proposed link between the MMR vaccine and autism in 1998, later research has concluded that this is not the case, says David Elliman a consultant at Great Ormond Street Hospital. “A multitude of scientific studies has examined whether there might be a link. None of these studies has found one.” No one really knows what causes the disorder, although it may be genetic.
# There is no cure but there are many treatments, ranging from talking and teaching therapies, to diets, supplements and medication.
# For more information contact the National Autistic Society on 0845 0704004 or www.nas.org.uk
KATE WIGHTON