REPORT DIANA APPLEYARD
When she was a child, Donna Williams's parents were convinced she was either crazy or possessed. She would spit and blink compulsively, bite her arms until they were raw and throw the furniture around. By her own admission, she was completely wild. But then, in the 60s, in Australia the term 'autism' wasn't in common usage . ' I just freaked my parents out,' says Donna.
She's now 32, a petite, striking woman with wavy auburn hair and a very precise manner. But she is something of a medical miracle. So much so that Hollywood is planning to make a film of her remarkable life.
Donna was born with severe autism and Asperger's syndrome. 'Until I was eight I was like a sleepwalker. I had no sense of myself - where I stopped and physical objects began. It was as if I merged with everything and had no boundaries - the most extraordinary sensation, like being permanently on drugs. I had no sense of time - I could watch the clouds for hours.'
We're talking in the small, bare room at Malvern College of Adult Education Donna uses for the consultancy she set up last January, to help and give advice to autistic children and their parents. She concentrates hard on each question before giving a measured response. Only in the last year has she mastered the art of fully interactive conversation.
Donna is one of a handful of people around the world who are 'able autistics'. From being written off as a child - 'my mother called me "the thing"' - she has studied sociology at university, taken a teacher-training course and now lectures on autism all over the world. She is also an accomplished sculptor and composer. After years of therapy and allergy treatment Donna can now look back with extraordinary clarity on what it is like to be an autistic child. it's estimated that autism occurs in about 15 of every 10,000 children, and for the parents of these children it's a bewildering and frightening condition, as their children simply withdraw from 'real life' into their own private world.
'I could become fixated on one tiny object and block out all other stimulations,' Donna says 'Just touching something smooth gave me a sensory buzz I could lock into for hours. I also had visual perceptive disturbances, which meant that walls and carpets would ripple and shimmer. All this made it impossible to make sense of the world when people spoke to me I could hear the sound patterns, but I couldn't make the meaning.' But she had remarkable powers of perception and memory. 'When I was three I would take a chair on to the back step and recite all of the TV programme I had just watched, using all the voices. My parents thought I was possessed.'She still has the ability to 'scan read' documents and can memorise whole chapters of books.
Her parents couldn't keep her in the house -at the age of three
she would let herself out at five in the morning and go down to
the park. By the age of eight she was frequently running away,
jumping on and off trains sleeping in sheds and doorways.
'I was in mainstream school, but in the remedial class. I learned practically nothing on a conscious level as I still couldn't make sense of language. But I took it all in on a pre-conscious level and if you gave me the right trigger l could repeat it word for word. I took everything literally. if someone said, "Donna, what did you do today at school?" I would give a litany of everything I had done l could go on for two hours - I had no way of filtering out irrelevant information'
She was labelled 'disturbed'. 'I would shake my head constantly,
just to see what it felt like. if I could feel, then at least
I existed I would punch my arms as hard as I could and then tickle
them. I was fascinated by the feeling of numbness and getting
sensation. I would scream to feel the rawness in my throat I loved
the sensation of pain because I didn't know it was pain.'
Today in her consultancy she advises parents not to restrain their autistic children from such acts 'it's their way of making sense of their bodies and the world around them. It's a stage they have to go through to find out about themselves. what l say is, "Make sure they bite gently and scratch lightly. Do it safely - but let them do it.'
Donna left school at 15 with no qualifications and ran away from home for good, beginning a string of unsuitable relationships with men who took advantage of her. 'If someone made a suggestion to me, I would just follow it. I had no idea of right or wrong. I became a victim of both violent physical and sexual abuse.' She managed to find herself a series of low-skilled and low-paid jobs, in kitchens and factories. When I went in for the job I would get by on role-play. I'd do it as my mother or someone I'd seen on the TV. I'd be fine unless they asked me a direct question such as, "Why do you want this job? I just couldn't answer. But usually they just thought I was pretty enough and stupid enough to do what was a very menial job.'
At 25, alter years of torment and abuse, including living rough,
she set down and wrote a book about her life. 'I had taught myself
to type, but I had no ideal could write long sentences.' Once
she sat down the words came pouring out 'l was so sick of my life
- sick of being used. I was suicidal and desperate. As I wrote
about my life the tears just poured down my face.'
Donna was then working in a hospital. 'I had this whole bundle of pages and I didn't know what to do with them. But then I saw "Child Psychologist" written on one of the doors, and that was who I'd always been able to rely on before, at school. So I just walked in and put this bundle of papers on his desk. A week later he phoned me. He was very excited and said, "Do you realise this book expresses the reality of life for a large number of autistic people?"' The book was sent to a publisher, who immediately saw the potential. It was to be titled Nobody Nowhere.
'I got a letter from the publishers saying they thought it would be a best seller. I thought, "All my life I've been so scared of people understanding me, but now I want to let the world know so l don't have to run and be scared any more."' But when Donna's publishers brought her to Britain they didn't realise that she couldn't yet function as a normal person. They set me up in this hotel and all these parents of autistic children came to see me for help. No one knew that I couldn't actually get out of the hotel without a prompt, so I stayed in my room for two months. Eventually I was crying and saying, "I have to get out of here," and fortunately one of the parents I had helped got me a ticket and got me back out on a plane.'
The first book was followed by two more: Somebody Somewhere and Autism: An Inside-Out Approach. Donna now works on a computer. 'At first l was terrified of learning to use a computer, but I'm very good at linear learning - information that takes me through on a clear, simple line. But I can't transfer knowledge. If I needed to learn a new computer program, I'd have to start right back at the beginning,' she says. Donna was in her 20s when, after years of searching for help, she met the doctors who would change her life. 'I discovered I had magnesium deficiency and my body couldn't properly digest food. it's what's called a leaky gut. That meant I had an overload of toxins in my system, which were basically acting like opiates - sending all kinds of the wrong messages to my brain, causing chronic anxiety.'
Her family had a history of pancreas and liver problems, and she's
convinced that dietary factors were major contributors towards
her autism. Working with a series of highly respected doctors
and dieticians, such as Paul Shattock at Sunderland University
and Dr Danny Danczac at Victoria Park Hospital in Manchester,
she was put on a strict diet with no dairy or sugar products,
and a whole list of other 'banned' substances.
'I noticed an immediate difference. I began to lose the constant anxiety and the visual disturbances. I could relate to where my body was in space and time, and I could make sense of language.' Over the past year she has been able to hold normal conversations. 'Before, I would say what I wanted to say, then stop and give the other person speaking time. I couldn't understand the normal flow of conversation.'
Even now, when you speak to her, you sense much of what Donna says has been rehearsed. What she calls 'free speech' is a newly mastered skill. Occasionally she breaks off to make strange noises - 'I love the sound,' she says, quite unapologetic - and to rest her head on the floor. Then she smiles, knowing she has done something 'odd'. Her consultancy for parents focuses on dietary issues. Many parents are amazed their children's condition can have anything to do with their lack of vitamins or minerals. 'Most doctors never discuss this,' says Donna. 'To them, dealing with autism is all about controlling the child's behaviour - not looking at why they're behaving like that.
'One nine-year-old screamed constantly when I first saw him. He had what I call "exposure anxiety,' - he couldn't cope with all the messages flooding his body. After a week off the food that was harming him he had stopped screaming and was becoming outgoing and involved.' Not everyone in the medical world agrees with Donna. But there have been clinical trials to back up her claim about the importance of diet. Dr Julian Kenyon is a doctor who works with many autistic children at the Centre for Complementary Medicine in Southampton and on Harley Street. 'Donna is an extraordinary woman' he says. 'I've been involved in treating her, and she's made simply remarkable progress. I also back up her claims - dietary effects can be a part of the cause of autism; nearly all suffers are sensitive to sugar, glutens and wheat.
For Donna, reaching the level of achievement in her life today
has been a constant battle. She has been married - to a man with
Asperger syndrome - but he left. Today she lives alone in the
Malvern Hills, her life filled with her work for others with the
'l describe the first 30 years of my life as "being in hiding". I felt so angry that l was labelled mentally disturbed. I didn't know I was autistic - nobody told me until I was in my 20s; I was broken and not quite right. I feel so angry about the degree of abuse I've suffered - all those people who treated me like a moronic bimbo.'
Now, writing her fourth book, she has been unlocked into the life she only glimpsed from the edges before, in shady often frightening images. And her remarkable ease shows that there is some light a the dark tunnel that is autism.
Somebody Somewhere is published by Doubleday, price £8.99. Autism: An Inside-Out Approach is published by Jessica Kingsley, price £12.99
AUTISM - THE FACTS
Sufferers of Autism have a fundamental inability to communicate with others - even to make eye contact - and find it hard to understand other people's feelings. This apartness tends to isolate them profoundly from the rest of the world. In an effort to create order from situations they can't understand, sufferers may develop strange obsessions, bizarre patterns of behaviour and seemingly irrational fears. The cause is almost certainly brain damage, but precisely what happens still a mystery. Autism is found among all races and social backgrounds and four times as many boys as girls are affected. Asperger syndrome - characterised by obsessive idiosyncratic behaviour - is a rare abnormality of brain development, probably related to autism.
For more details contact the National Autistic Society, 393 City Road, London EC1V 1NE.
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