New world disorder

The GCC brought autism to the table at the United Nations, but it has a long way to go in its own backyard. Vernon Baxter hears how local charities are still waiting for a communication breakthrough.

From a prolific start, the Arab world has made few truly global contributions to world medicine in the past 750 years. On April 2, however, the tiny Gulf state of Qatar managed to bring the world's attention to a disorder that affects tens of millions of people around the world - autism.

On December 18 2007, the United Nations General Assembly adopted resolution 62/139, tabled by the state of Qatar, and April 2 was declared World Autism Awareness Day ‘in perpetuity'. It is a remarkable achievement, but it is also a curious one.

The figure for Americans living with the effects of autism spectrum disorder comfortably outnumbers the entire population of Qatar - so why has it fallen to a state of less than one million people to take the lead? Ironically, Qatar's leadership probably tells us more about how far behind the region is at tackling autism than anything else.

In many countries across the Gulf, it has been the families of patients with autism that have struggled against a lack of cultural awareness, physician education and absence of care. "We established the Gulf Autism Union in 2002 to help other countries that hadn't started with any programme so that they didn't have to spend 10 years getting to where we already were," explains Samira Al-Saad, director of the Kuwaiti Autism Center. "This year the whole world is celebrating with us and when I saw it on CNN I was very happy that this initiative has come from our small Gulf area."

Bursting the bubble

April 2 may have been a banner day for the Gulf Autism Union, but it is barely scratching the surface of the region's fight to raise awareness, according to Mohammad Al Emadi, director general of the Dubai Autism Center (DAC). "Even today, most of the physicians practising here don't have a clue about autism," he states.

DAC recently hosted the first practitioner's conference on autism, which featured speakers from prestigious institutions such as Harvard University and the University of Oxford. The conference aimed to provide practical strategies for medical practitioners to deal with autism, and Al Emadi hopes it will help improve diagnosis rates.

"Doctors have a very big role to play in this and we would be very happy to get calls asking for us to look at a patient," he says. "They have to be part of the society that helps care for these children - the DAC cannot do it on its own."

A lack of physician education can be deeply frustrating, and emotionally devastating, for the families of children with autism. Many parents have to leave the Gulf before managing to obtain a diagnosis and even if the child is treated locally, physicians too often have an inflexible approach to treatment, reports Al-Saad.

"People believe physicians and if they tell parents they have to follow only that treatment and ignore everything else then they will," she says. Parents are willing to do anything for their child, she claims, but Al-Saad blames physicians for failing to explain that when it comes to autism, there are no miracle cures.

"Many parents are looking around the world to pay for a magic pill, but there is nothing like this," she insists. "It is hard work, training and patience, that is all - I wish that physicians would help us by spreading the information to the parents and not giving false hope by just concentrating on one type of treatment."

Patient progress

Although the GCC's economies are experiencing a boom period, times are tough for charities, according to Mohammad Al Emadi. The DAC has started the construction of a new centre, which should be capable of holding up to 140 patients. The trouble will start when they have to find the specialists to staff the new centre, he remarks.

"In Dubai the rate of living is very high and the salaries that we pay are not helping to convince these people to come here," admits Al Emadi. "Unfortunately we are also seeing a lot of competition from the private schools in Dubai," he adds.

"They have a lack of teachers and they target special needs centres - it is a big challenge for us because they can afford to offer them double their salaries." Al Emadi feels it is time for corporate responsibility to take a lead role in working with the region's charities.

"The GCC is doing well and I think it is time for some of the companies to adopt a charity and really work with it very closely."

Matters of stateFor both Mohammad Al Emadi and Samira Al-Saad one thing is for certain: governments are not doing nearly enough to either address patients with autism or assist those dedicated to helping them. Al Emadi hopes that the newly-established Dubai Health Authority (DHA) will take a bold step and establish strong links with the DAC from the outset.

"The DHA could help in spreading more services and take some of the burden off DAC," he suggests. "They could affiliate with us and make us the centre for diagnosis and early intervention."

Al Emadi claims that the Dubai government is set to announce another authority, the Dubai Social Authority, which will look after all aspects of charitable work in the emirate. He hopes that the new organisation will help generate much-needed data about Dubai's handling of special needs patients. "There should be some sort of key performance indicators to see where we are going," he argues.

Al-Saad insists that there is only so much the region's charities can do to help raise awareness and ultimate responsibility has to lie with government. "The ministries of health and education in the Gulf need to collaborate more with the universities and educate physicians," she states.

"It is not something they should do, but something that they have to do."