Autism… the invisible world [Archives:2008/1124/Health]
Amel Al-Ariqi
[email protected]
Ahlam Al-Arashi always noticed that her older son Ashraf wasn't like other children. At age 3, he was unable to speak with a normal tone or rhythm. When he entered nursery school nearly at age 5, he had difficulty recognizing colors, naming pictures and remembering numbers and letters.
Finally, at age 10, Ashraf was diagnosed with Asperger syndrome, one of several autism spectrum disorders (ASD) characterized by difficulty in social interaction and by restricted, stereotyped interests and activities.
His mother recalls, “I was alone on this journey. I felt like I was completely in the dark, with no idea what was wrong with my child. After numerous medical tests and talking with doctors in Yemen, Iraq and Jordan, most admitted that there was a gap between his mental progress and his actual age, but said he'd be fine at a certain stage. However, one Iraqi doctor suggested that my son, who was age 10 by then, might be autistic.”
Thereafter, Al-Arashi began amassing medical studies, books and other materials in an effort to get more information and educate herself about the disorder.
She admits, “For a long time, I was in denial, unable to believe that my child is autistic, although most of the symptoms were obvious. Part of my denial resulted from the fact that I had no idea how to deal with Ashraf as an autistic child.”
Thus, she spent another three years seeking treatment for him, until she met Suad Al-Eryani, another Yemeni mother of an autistic child, who established a center in 2005 to receive autistic Yemeni children.
“When I came to the center, I realized that my son wasn't alone and that many Yemeni children suffer this disorder. In fact, my son's case isn't so bad, compared to others with mild autism. However, I also observed the confusion most parents feel because they have no background information about autism; thus, they have no idea how to deal with their autistic children,” explains Al-Arashi, who now is executive manager of Al-Eryani's center.
Located in the Sana'a countryside, the center is considered the first of its kind to receive children with this disorder. Currently working with 50 children between ages 5 and 13, 16 Yemeni therapists work eight hours a day to provide the children behavioral and communication therapies.
These include numerous programs developed to address the range of social, language and behavioral difficulties associated with autism. Some focus on reducing problem behaviors and teaching new skills, while others focus on teaching children how to act in social situations or how to communicate better with others.
Observing a lack of care for autistic children in Yemen, Al-Eryani established the Yemen Foundation for Special Education and Autism in 2005 and the Sahar Autism Center, named after her autistic daughter. Due to lack of funding, she began with only a table and chair from her home, in addition to the support of her husband Dr. Ibrahim Al-Adofi, currently Yemen's ambassador in Switzerland, and Al-Arashi's selfless involvement.
With no funds, Al-Eryani was forced to sell her jewelry to support the center and when that was gone, she started digging into the modest inheritance left to her by her late father. As the center began gaining recognition, private, government and non-governmental organizations eventually began supporting it.
Under the auspices of the Ministry of Social Welfare, the center's name was changed to Yemen Center for Autism this past October in order to better reflect its ambitious mission regarding autism throughout Yemen, according to its director, Hussein M. Najee.
Despite the center's limited facilities, both Najee and Al-Arashi believe that those children who come to the center are lucky because they are able to receive the type of care and attention that many autistic Yemeni children can't access.
Al-Arashi explains, “Because autism remains a mysterious and unknown word to most Yemenis – including Yemeni doctors and Yemeni governmental officials – it's difficult for us to explain these children's cases and their needs so that they can obtain their rights and get the therapy that will allow them to integrate into society and have a better life.”
Likewise, Najee notes that Yemeni families' ignorance about autism may create social problems within that family, which can't deal with an autistic child, who in turn, may become violent and frustrated because they can't express themselves properly.
He adds, “It's hard to create an awareness of autism because those with it don't look disabled. Parents of autistic children often say that others simply think their child is naughty, whereas autistic adults find that they are misunderstood.”
Estimating that as many as 150,000 Yemenis may have autism, Najee explains, “Estimates about autism in Yemen differ, depending on what ratio is used. In those countries that address autism, one thing is certain – it's more prevalent than previously believed. While it's clear that more children than ever are being classified as having autism spectrum disorders, it's unclear how much of that increase is due to changes in how we identify and classify ASD and how much is due to an actual increase in its prevalence.”
Different countries use different ratios due to how much better and more consistent are their estimates; for example, Dubai's estimate is 1 in 145, the United States is 1 in 150 and the United Kingdom is 1 in 100.
Using the most extreme ratios, Yemen's autistic population ranges from 40,000 to 133,000, or from 1 in 500 to 1 in 166, respectively, according to the U.S. Center for Disease Control and Prevention in February 2007. Until further studies are made, this range must be used.
While scientific studies say there's no cure for autism, some autistic children grow up to live independently, whereas others require constantly supportive living and work environments.
Both Najee and Al-Arashi insist that the best way to help an autistic child is through early intervention because it can change the way the brain develops. This means that diagnosing the child as early as possible is essential so he or she can begin therapy early.
Najee notes, “In order to achieve this goal, we must learn about autism, training and developing Yemeni staff to be able to screen autistic children and help them lead a less stressful and more meaningful life – with their families. Such trained staffers eventually can serve as future instructors for an outreach program to train and develop other Yemeni staff from the governorates so that more centers can be started in Yemen.
He continues, “We should obtain training materials and instructors from overseas to keep abreast of developments in the field of autism by attending workshops overseas, as well as holding them in Yemen. This will serve to advocate change in community attitudes, as well as support the needs of autistic individuals and their families, in addition to increasing both public and government awareness regarding Yemen's substantial autistic population and the disorder's rapid growth.
“Additionally, we should develop a central library with books, research information and data and training materials for Yemen, in addition to cooperating with local and regional universities and autism centers for training, research and exchanging expertise,” Najee concludes.
Autism?
Autism is a complex developmental disability typically appearing during a child's first three years and resulting from a neurological disorder affecting normal brain function, thereby impacting development in social interaction and communication skills. Autistic children and adults both typically exhibit difficulty in verbal and nonverbal communication, social interaction and leisure or play activities.
Because the symptoms of autism vary widely, two children with the same diagnosis may act quite differently and have strikingly different skills. However, the three main areas of difficulty which all autistics share – sometimes known as the “triad of impairments” – are: difficulty with social interaction and communication, difficulty with social imagination, failing to respond to his or her name, poor eye contact, appearing not to hear at times, starting to talk later than other children, losing previously acquired ability to say words or sentences and performing repetitive movements, such as rocking, spinning or hand-flapping Other characteristics include a love of routine, sensory sensitivity, specialized interests and learning disabilities.
Those from all nationalities and cultural, religious and social backgrounds can have autism, although it appears to affect males more than females, as 4 out 5 autistics are male. It is a lifelong condition wherein autistic children grow up to become autistic adults.
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