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How doctors turned Julie into a twitching, bloated wreck
(Filed: 16/11/2003)

Julie Eldred used to have a good job, a long-term boyfriend and her own home. That was 17 years ago. Since then she has been reduced to a twitching, bloated, semi-catatonic wreck by prescription drugs, which numerous experts now say she should never have been given.

Julie Eldred was a bridesmaid at her sister's wedding in 1986

What Julie, now 43, actually has is Asperger's syndrome, a relatively mild form of autism that in her case was so slight that she was able to live the first 26 years of her life with few problems.

Asperger's is not a mental illness and cannot normally be treated with drugs. Instead, people with the condition require behavioural guidance in relating to a world they often find difficult to understand.

When Julie first exhibited signs of anxiety, a common symptom of Asperger's, and sought medical advice, she was said to be suffering from everything from an attention-seeking disorder to mental illness.

She was locked up and put on 32 different drugs - which have ruined her health, led to her being repeatedly held in secure psychiatric institutions and prompted her to make several attempts to kill herself.

Doctors say that the side-effects of the different drug treatments have given her tardive dyskinesia, a condition that makes her jerk her limbs repetitively and grimace uncontrollably, and catatonia, where she "freezes" while climbing the stairs, or flushing the lavatory.

For years her 64-year-old mother Maureen tried, and failed, to get Julie's National Health Service doctors to acknowledge her Asperger's but was branded an "interfering" parent.

Only recently has Julie's Asperger's syndrome finally been acknowledged by her doctors, but they still insist on keeping her medicated even though at least one expert said she could die as a result.

In her home in Ruislip, north-west London, Mrs Eldred recounts the story of her daughter's tragic life. She was born in 1960, the second of three children, to Mrs Eldred, a retired secretary, and her husband Peter, a panel-beater who died two years ago. Julie has an older sister, Sandra, 45, and a younger brother Adam, 37, neither of whom has Asperger's.

"We always knew Julie was different," said Mrs Eldred. "She was a quiet girl, the kind who sat at the back of the class at school trying not to draw attention to herself.

"When she was 16 she left school and trained to become a secretary. She got a job and proved herself to be a very good worker because she was focused and accurate."

When Julie was 26, Mrs Eldred suggested to her that she buy her own home with her sister. "With hindsight, that was the start of the problems," she said. "Moving out made her anxious and she went to her GP and he put her on benzodiazepines [a highly addictive form of anti-anxiety drug]."

When the anxiety did not abate, she was referred to a psychiatrist, who decided that she was an attention-seeker.

In a state of growing drug-fuelled confusion, Julie made the first of several attempts to kill herself, stabbing herself in the chest and neck with a pair of scissors, puncturing her lung and windpipe. She was sectioned under the Mental Health Act and locked in the secure ward of a hospital, where cocktails of drugs were administered to her. Her 10-year relationship with her boyfriend fell apart.

Julie's life took on a new pattern. Under medication, she was like a zombie. Eventually she was released from the secure institution and tried to take herself off the drugs, suffering severe withdrawal symptoms. These were interpreted as a need for more medication and she was re-sectioned and the cycle began again.

Mrs Eldred agreed to sign documents permitting the authorities to detain Julie for periods of six months or more only after they threatened to take her to court to remove her authority as next of kin.

Finally, in 1993, Mr and Mrs Eldred paid for a psychiatrist to offer an independent opinion. He diagnosed Asperger's syndrome and sent his report to Julie's doctor, who disagreed with it.

Instead, three years later her former doctor wrote a letter to other professionals saying that Julie's mother "continues to interfere as she has done for many years" and had "sabotaged" Julie's treatment.

Following a complaint by Mrs Eldred, the General Medical Council warned the doctor that his language had been "inappropriate and open to misinterpretation".

That did not stop the authorities from locking up Julie. While being detained she was frequently kept in isolation, forcibly restrained by staff and allegedly bullied and sexually harassed by other patients. Her latest regimen of drugs has also made her balloon from her normal weight of 8st to 15.5st.

During the past 10 years a succession of experts in Asperger's have confirmed Julie's diagnosis and drawn attention to the damage to her body and mind cause by the inappropriate drug regimes.

In August 2000, Amitta Shah, a consultant clinical psychologist, wrote in a report: "The current treatments, which include anti-psychotic medication, intense observation, physical restraint and seclusion for long periods, are all likely to exacerbate Julie's difficulties and lead to deterioration in her physical and mental health.

"She is showing serious side-effects, which include tardive dyskinesia and other disorders of movement and volition . . . and she is extremely vulnerable to developing full blown catatonia, which can become irreversible and life threatening."

All Julie needed was a stable environment, gentle support and interesting activities. This would best be provided "outside a medical/psychiatric setting", Dr Shah said.

Prof John O'Grady said that Julie should be taken off drugs that have "already more than likely caused her some harm and which have been singularly without long-term benefit to her".

Mrs Eldred says that Julie - who is currently living at her mother's home but could be sent back to a secure unit if she tries to wean herself off the drugs she is still being prescribed - cannot be left alone. "She was more independent at 16 than she is now at 43 as a result of her many years of involvement with the mental health system," she said.

"They acknowledge she has Asperger's but are saying she also has a schizo-affective illness. The truth is that her other problems are all caused by the drugs she has been given for 17 years.

"She has been ruined and it is the doctors who have done it. I can't help hating them for it."

For publishers wishing to reproduce photographs on this page please phone 44 (0) 207 538 7505 or email syndicat@telegraph.co.uk

9 November 2003: Broadmoor knew risk in holding Asperger's patients
2 November 2003: Scandal of asylums that lock up the sane

External links  
What is Asperger syndrome? - National Autistic Society
General Medical Council