Wednesday, August 20, 2008

Saving people from peddlers of false hope [Autism]

Aug 20, 2008

By Radha Basu

AFTER their children are diagnosed with autism, many parents here drift from one therapist to another, hooked on the hope that someone, somewhere, somehow can make their little ones better. With mainstream medicine offering no cure, these parents say they have no choice but to knock on the doors of a motley crew of people who practise over 20 'alternative' therapies here.

A 43-year-old teacher The Straits Times spoke to has consulted more than 10 practitioners since her only son, now 11, was diagnosed as autistic in 1999. Under their guidance, she has pumped the boy with vitamins and drugs, pock-marked his arm with injections and even put sensors on his head to map the way his mind works. Nothing worked.

'Every therapist I went to said they had seen good results in 99 per cent of the cases they treated,' said the mother. 'But my son was always the exception.'

Autism refers to a wide range of brain-based disorders that affect a person's ability to communicate, form relationships and respond appropriately to the environment. Autistic people live in their own worlds, seldom looking people in the eye or expressing emotion.

Usually diagnosed in childhood, the condition is lifelong. That is a bitter pill that many parents find hard to swallow. Desperate for a solution, they turn to anyone who holds out hope. But hope often becomes disillusionment.

When a human resource manager took her autistic daughter to see a doctor who dabbles in alternative therapies, she was sold a $160 bottle of supplements to help with what was diagnosed as a 'weak immune system'. The mother came home, did a quick Google search and was 'shocked' to discover that the doctor had sold her a multi-level marketing product, for which sellers typically get a commission. 'Are doctors even allowed to do that?' she asked.

In another case, a mother said she spent nearly $100,000 on various alternative therapies here and overseas in the hope that her child would 'recover'. When the boy's younger sister was also diagnosed with the condition, the family ran out of money - and determination - to repeat the same cycle with the girl. They stuck to conventional treatments - like speech and occupational therapy - and took the girl to a government-subsidised autism intervention programme. Ironically, she is coping much better today than her brother.

Since these alternative remedies have no scientific basis, doctors have long harboured doubts about their efficacy. Many regard such 'complementary therapies' as placebos or pseudo science at best, and brazen quackery at worst.

Increasingly, parents here too are realising that such therapies are not just a drain on their wallets, but also may harm rather than heal their child.

In the face of their growing discontent - and an avalanche of literature on the potential harmful effects of some therapies - a government-appointed committee has begun drafting a series of guidelines on the autism therapies available here. The guidelines will highlight therapies that appear to be working, those that are not evidence-based and those that are downright dangerous.

But can more be done to protect parents from practitioners who peddle false hope? At least one country has shown the way. In January this year, the British government announced stricter regulations of various kinds of 'alternative' or 'complementary' medicine such as homeopathy, aromatherapy and traditional Chinese medicine. The move coincided with reports in the British media highlighting the questionable practices of autism practitioners. The new British regulations, however, apply to most alternative medicine practitioners, not just those who treat autism.

In April, a new regulatory body - the Complementary and Natural Healthcare Council - was set up to provide a voluntary register of therapists and practitioners. The main aims of the council, its website says, are to protect patients, build trust and boost consumer confidence. It can register therapists - thereby giving them a seal of legitimacy - but also strike them off the rolls if complaints against them are found to be true.

Perhaps it's time for a similar move in Singapore as well. With 400 children diagnosed with autism annually in public hospitals alone, advocates such as Member of Parliament Denise Phua are hoping that clinics or centres that 'profess to cure people of autism' can be registered or licensed. The Ministry of Health, she added, should take the lead in initiating the move. Ms Phua, who has a son with autism, is head of the Autism Resource Centre (ARC), which helps those with autism get better education, employment opportunities and care.

The ministry 'may not be an expert on autism', said Ms Phua, but it could set up an assessment panel by working with local autism bodies such as ARC and overseas experts such as the Britain-based Research Autism.

Autism advocates insist that licences must be based on a set of objective criteria. These could include:

# Whether the effectiveness of the treatment is based on hard evidence;

# Potential risks to the patient;

# Cost of treatment;

# Knowledge and skills of the practitioner; and

# Reference checks on the practitioner.

'Licences should be provisional before confirmation and then renewable on proof of performance,' argued Ms Phua. Most importantly, a 'whistle-blowing policy' should also be put in place so that investigations can be conducted in case of misconduct.

Practitioners themselves say licences could help to separate the grain from the chaff. A homeopath said that while 'individual practitioners can fail, therapies cannot'. The difference between failure and success depends on the 'skills and experience' of the practitioner, she said, adding that she would be willing to put herself to the test by applying for a licence.

In another interview, an energy healer said that while she knows of fellow practitioners who have slipped up, her own track record has been '100 per cent successful'.

Tired of such hyperbole, parents are hopeful that licensing can help them make the best of a desperate situation - and protect their children from further harm. Wanting to see their children get better has made them vulnerable to exploitation - and heartbreak.

Licensing practitioners and penalising them for false claims may just be the wake-up call parents hooked on hope need to jerk them back to reality.

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