Turning tides of autism

Until recently, there was very little awareness about autism in the Middle East, and very few, if any, data about the prevalence of the condition in the region. This is now beginning to change.

Bolstered by international collaborations, the past decade has seen a number of autism research centers and non-profit organizations established across the Middle East. These institutions conduct research and provide educational services and training for children with autism and their relatives. Recent research has also shown that large Middle Eastern families can provide autism researchers with new opportunities to understand the genetic causes of the condition.

Autism is a neurodevelopmental disorder characterised primarily by impaired social interactions and communication and by repetitive, stereotyped behaviours. In parts of the Middle East, autism, along with other mental illnesses, were traditionally thought to be the work of black magic or the "evil eye," in the past, and children with autism were kept out of mainstream society, with little or no access to education.

"There is not enough awareness about autism in Egypt or other countries in the region," says Ranwa Yehia, whose four-year-old son Nadeem has the condition. "Like everything else, people fear what they do not understand and inadvertently discriminate against it because they don't know otherwise."

By participating in international events such as World Autism Day and disseminating information via mass media and outreach activities at schools, hospitals and colleges, these newly founded organizations are helping raise awareness about autism throughout the Middle East to reduce the stigma attached to it.

Addressing a need

One of the earliest such organizations to be established is the Egyptian Autism Society, which was founded by educational psychologist Dahlia Soliman in 1999, who studied autism at the University of Birmingham, UK, before returning to Egypt, and provides numerous services for children with autism and their relatives.

"We have a very serious problem of under-diagnosis in Egypt and the Arab world. Many paediatricians fail to understand the signs of autism so the children never get the proper care and treatments they need," says Soliman.

The society recently started offering children an intensive, full-day programme called Headstart, which uses three specialized educational programmes, administered to children with autism on a one-to-one basis. All three are well established, evidence-based interventions that have been shown to improve the educational outcomes of children with autism.

The TEACCH program (Treatment and Education of Autistic and Communication related handicapped Children) developed in the early 1970s by American psychologist Eric Schopler, provides diagnostic evaluations, workshops and recreational groups for children with autism and training and support groups for their parents.

Applied Behavior Analysis (ABA) is an intervention that teaches linguistic, cognitive and social skills to children skills, which focuses on rewarding desired behaviours and discouraging inappropriate ones. Picture Exchange Communication System (PECS) is a teaching method that facilitates children's communication skills through individualized learning environments.

"Nadeem receives occupational therapy and training in social skills, academic skills and speech therapy," says Yehia. "He has been blooming and progressing on all levels as a result of their hard work, and the progress he has made is thanks to their dedication and knowledge of working together as a team along with the parents."

"I am a complete believer in their work, and it should be taken as a model for more work on autism in Egypt. They should be given all support to continue doing what they are doing".

The Dubai Autism Center, founded in 2001 by a decree from the late ruler of Dubai, Sheikh Maktoum Bin Rashid Al Maktoum, uses a similar approach. It, too, provides one-to-one tuition for autistic children using the same specialized programmes, and offers family support clubs and forums that encourage parents to meet each other, share their experiences and give feedback on the services being offered.

It offers workshops and seminars that provide families of children with autism with up-to-date information about the latest interventions available in the West. They have also established multidisciplinary teams that include a clinical psychologist, neurologist, psychiatrist and speech and communication therapist, to diagnose and treat children with Autism Spectrum Disorders.

In June, 2007, the New England Center for Children (NECC) a leading school for autism treatment and education in Massachusetts, United States, signed a 10-year contract with the Abu Dhabi Health Services Company to bring cutting-edge research and treatments to the United Arab Emirates.

With US$100 million in funding from the UAE government, the NECC-Abu Dhabi Autism Centre opened in 2009. It started with 24 children and about 60 employees and now has about 100 members of staff, who work with 48 children and offer training to local instructors. The centre also conducts some applied research on best practices in autism treatment.

The latest initiative to address the condition is the Autism Research and Treatment (ART) Center at the King Saud University in Saudi Arabia, which opened in March 2010. Funded by the government of the Kingdom of Saudi Arabia, the ART Center is the first centre to offer basic research combined with treatment in the region.

"Our vision is to conduct research and develop strategies to integrate the best available treatment and interventions through evidence-based approaches," says Laila al-Ayadhi, a neurophysiologist who directs the center.

Scientists at the centre have published several research papers on autism in Saudi Arabia in particular, and are currently involved in five different projects to identify genetic and electrophysiological markers which might help in the diagnosis of autism spectrum disorders.

A research goldmine?

The genetic basis of autism is highly complex, with hundreds of mutations associated with the condition already identified. These range from deletions and duplications to inversions of large regions of chromosomes. Some of these have been shown to be inherited, but many arise spontaneously in the egg or sperm.

Most of these mutations are extremely rare, or even unique, and together all the mutations identified so far account for around 1% of autism cases. Consequently, identifying mutations linked to autism — which could offer a better insight into the condition — is difficult, as it usually involves screening large numbers of individuals.

Middle Eastern populations offer advantages to autism researchers, for several reasons. Firstly, the practice of consanguinity, or marrying relatives, is common throughout the region, increasing the frequency of rare susceptibility genes and autosomal recessive disorders. Secondly, high birth rates mean that there are many large families in the Middle East, many of which contain marriages between first cousins.

By studying families such as these, researchers can find numerous affected individuals within the same family, making genetic screening and the identification of rare mutations much easier.

Christopher Walsh, a neurogeneticist at Howard Hughes Medical Institute, adopted this approach to find a number of previously unidentified inherited causes of autism. In collaboration with Eric Morrow of Massachusetts General Hospital, Walsh visited Dubai, Kuwait, Saudi Arabia, Turkey and Pakistan¹.

Working with physicians in those countries, they recruited 104 extended, consanguineous families, 88 of which have marriages between first cousins. They used a technique called homozygosity mapping to compare the chromosomes of affected and unaffected relatives from the same families, to identify and characterize small genome fragments that are shared by family members with the condition.

"This is an efficient way to rapidly narrow down from 20,000 possible genes causing a disease, to a much smaller number of candidates," says Walsh. "It can only be applied in families that share ancestry, which is why communities in the Gulf region are so well suited to the approach."

The study, published in Science in 2008, showed that several of the families had rare and inherited deletions of large regions of chromosomes, each of which normally includes genes that are involved in the formation and function of synapses.

"The deletions remove DNA containing on/off switches that control when and how the nearby genes are turned on or off," says Walsh, "so that although the nearby genes are intact, they are disabled. A couple of these nearby genes appear to be targets of the plasticity processes that underlie learning."

Walsh's project is ongoing, and he and his colleagues are visiting the Middle East regularly to work with collaborators in Kuwait, UAE, Saudi Arabia, Qatar, Oman, Jordan and Tunisia.

"Our challenge is to identify the many different causes of autism one at a time," he says. "It likely involves several hundred genes. This is a big challenge that can be best met by studying large families where a single gene can be tracked through the family."

Despite this progress, many challenges remain for Middle Eastern children with autism. "I am lucky that I can afford the training my son needs, but this not the case for most parents in Egypt," says Yehia.

For many poorer families in Egypt, autistic children are kept at home, often never given an education because their parents cannot afford the rare and expensive private facilities that offer these services. They often drop out off mainstream schools since teachers in the already overcrowded schools are not trained to handle them.

"Discrimination comes mostly from the government, regarding mainstreaming autistic children within the educational system," adds Yehia. "This can only be solved by nation-wide government policies to support parents facing this situation."

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