It didn’t take Ahmed’s classmates long to realise he was different.
While the other five year olds were boisterous and playful, he was reserved. He sat alone and did not talk much. Puzzled and a little disturbed, his fellow pupils told their parents about the strange boy who shared their classroom but seemed to inhabit a separate world. Two months after Ahmed began attending the school, the headmistress summoned his father, Nabil Emara.
“The parents had complained to the school management that they paid a lot of money to this school and didn’t want their children mingling with a weird classmate,” Emara says.
What these parents did not understand was that Ahmed, now 22, had autism, a neurodevelopmental disorder almost unheard of in Egypt at the time.
“The headmistress tried to explain the situation but they did not want my son among their children,” Emara says.
So he was forced to pull his son out of school. “People need to understand that autism is not an infectious disease,” Emara says. “Your son will not contract it by sitting next to my son. My son is not diseased, he is just different.”
Ignorance and misunderstandings
Many parents of autistic children in Egypt have echoed Emara’s plea. Autism is not only misunderstood, for many Egyptians it is nonexistent.
According to Autism Speaks, a leading autism science and advocacy organisation, the disorder is characterised, in varying degrees, “by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviours.”
The diagnosis usually takes place between the ages of two to three years old. Often parents seek medical attention when they feel that their child is not developing properly. A red flag is delayed speech, a common symptom of autism. In some cases, autistic children develop speaking skills early but suddenly regress, losing what they learned, which is devastating for their parents.
To date, Egypt does not have specific statistics on how prevalent the disorder is in the country.
“Here in Egypt, we try to be conservative and say that it appears in one in every 250-300 children,” says Dhalia Soliman, the president of the Egyptian Autistic Society (EAS).
When Soliman, a psychologist, established EAS in 1999, it was the first centre to focus only on autistic children. Fourteen years later it still is.
Most centres cater to minors with special needs in general and do not have services specifically designed for autistic children. To date, the exposure of many Egyptians to the disorder is very minimal and misunderstandings about the disease are common.
“Many people who see autistic children just assume that they are mentally retarded,” explains Soliman. “In the countryside in Egypt, many people think that the child is touched by spirits.”
Through the years EAS has offered training in autism to everyone from paediatricians and nurses to schoolteachers and primary health care providers. They also organise awareness campaigns to improve people’s understanding of the disease.
“Last year, we managed to diagnose 1000 new cases after our campaign,” Soliman adds.
However, because of the lack of awareness of the disorder, parents with autistic children often struggle just to get a diagnosis.
“When I started 14 years ago, 80 percent of the cases were misdiagnosed. Many parents were told that their kids were suffering from cerebral palsy,” Soliman said.
Emera was told that his son Ahmed had epilepsy, even though the child had not suffered from one epileptic episode. After a brain scan, Ahmed was prescribed Depakine, an antiepileptic drug and a mood stabiliser.
“My son had never had a seizure but I followed the doctor’s orders and gave him the medication for seven months,” Emara said.
Worried that the diagnosis might be incorrect, Emara took his son for treatment overseas. After a series of medical tests, he finally got a diagnosis.
“They told me, ‘congratulations your son has autism',” remembers Emara. “They were suspecting something much worse, so they were relieved that it was autism.” But he felt lost. “I didn’t know anything about autism. No one in Egypt did. It was like being in a pitch black tunnel. But as we all know, if you work hard, there is always a light at the end of the tunnel,” he says.
And so Emara began arming himself with all the knowledge he could in order to help his son. Now, he is considered one of the biggest campaigners for the rights of autistic children in the country.
God loves these children
“Some parents are embarrassed, but I know that God loves these children,” Emara explains.
He once asked a sheikh about the way religion perceives autistic children. The sheikh told him that autistic children are not obliged to perform any religious duties.
“In my view, only angels are not obliged to perform religious duties. So I believe my son Ahmed is like an angel,” explains Emara. “God has blessed me with this angel to live with me in my home.”
Ranwa Yehia, a former journalist and director of Arab Digital Expression Foundation, was told that her son Nadeem is autistic when he was two years and nine months old.
Nadeem, who knew how to pronounce “cat” when he was two years old, suddenly could not say the whole word anymore. At a Halloween party at Nadeem’s nursery, the music was too loud and so he began crying incessantly throughout the day. Finally the nursery asked to see Yehia and told her that they cannot school Nadeem without a shadow teacher to accompany him in class.
“The first year was the hardest,” explains Yehia. “One of the symptoms of autism is tantrums. It takes a long training process for parents to learn how to be able to help their children find coping mechanisms to decrease their frustrations and thus their explosive outbursts.”
Nadeem is now six years old. Early diagnosis, Yehia said, is key to helping autistic children develop and overcome many hurdles. The fact that her child could not communicate verbally also scared her.
"It was very difficult when I realised that if something hurts him, whether physically or psychologically, he won’t be able to tell me,” Yehia says. “This was the hardest part for me.”
At the time of diagnosis, Yehia was already eight months pregnant with her second child, Ramy. She was told that she was at a 20 percent risk of having an autistic son, so kept a close eye on Ramy for any signs. Ramy, now three years old, has shown no symptoms of autism.
Lack of support for parents
While trying to find information to assist her son, Yehia was shocked to find that there was almost nothing about autism for parents in Egypt. On the internet, very few sites offered information in Arabic to Egyptian mothers. Parents also struggle financially. A child with autism typically needs at least 40 hours of one-to-one training a week for several years so that he can learn basic social, occupational and speech skills. Yehia says that the overall costs may add up to more than LE5000 per month.
Momen El-Mohamady, whose four-year-old son Hazem is autistic, has the same complaint. “We pretty much spend 50-70 percent of our income on Hazem’s expenses,” he says.
While the spending habits of other parents alter as their children grow, those with autistic children find their expenses gradually increasing, El-Mohamady says.
“The parents of normal children might stop buying diapers when the child is potty trained and then begin spending the money on gadgets needed for a toddler,” he explains. “But for us, you continue to buy the diapers – even more expensive ones to suit an older child - and then you also spend money on the other gadgets. So you have both expenses to deal with.”
Enrolling an autistic child in school is another hurdle. The Ministry of Education requires special needs children to undergo an IQ test in order to be allowed to attend mainstream schools. The tests are oral, which means that a child with autism, who struggles to communicate, will inevitably fail. The children who make it into mainstream education also need to be accompanied by shadow teachers. While the Egyptian government allows them to enter the schools, the parents are expected to pay the fee.
“The cheapest shadow teacher costs about LE1,000 per month,” says El-Mohamady. “Where am I supposed to get this money?”
Even if the money is readily available, not all schools accept autistic children.
Eman Gaber, deputy manager of the children’s department at the general-secretariat of mental health in the Abbassiya Mental Hospital, says that while on paper many schools take autistic children, in practice very few do.
“We did a survey last year asking parents if they accept autistic children in the schools their children go to,” Gaber says. “The vast majority said no.”
Soliman’s lobbying efforts are working though. She regularly mainstreams children into regular school and even has one student who made it to university. Two more of her students are expected to apply to university next year.
In past years, the Ministry of Health had allowed autistic children to receive only five hours of care in public mental health hospitals across the country. This year, in collaboration with EAS, they will open a new centre, which will provide 25-30 hours of care per week. The centre will offer three classes to 15 autistic children.
“If this experiment works, we will try and apply it in other places,” explains Gaber.
The classes will only cost approximately LE200 per month to reduce the financial burden on parents. Another issue is that because autism is not recognised as a disability, autistic males are not exempted from the army.
“When the kids go do the entrance tests for the military they get harassed big time,” explained Soliman. “So we try and get exemptions for them by using an excuse like flat feet, which is ridiculous.”
While parents in Cairo struggle, the situation becomes even more depressing in other governorates.
“Outside of Cairo, it is impossible and not just tough,” Soliman explains.
Parents, lucky to get a diagnosis, are often forced to relocate to Cairo. Others try to visit EAS, once a month or every few months. In these cases, EAS tries to train the mother to apply the programme at home.
"This is difficult. We need to have services available in all governorates,” says Soliman.
Gaber adds that there are cases where mothers living outside of Cairo, end up isolating their autistic children in one room.
“If a mother is poor and has no resources, then she will resort to this,” Gaber explains.
Added to that, unlike children with Down syndrome, autistic children do not have any specific facial features to differentiate them from normal children. This, those involved in the issue, can work against them.
“The fact that they look normal is sometimes a disadvantage,” explains Soliman. “They go to the supermarket and throw temper tantrums. So you have a 14 year old acting like a two year old and people just assume that he is weird or spoiled.”
Soliman continues her fight to get both rights and services for children suffering from autism. While parents of the children do their best to deal with their situation.
“I tell people that having an autistic child is like having three children because of the amount of effort that has to be done regularly and consistently on a daily basis,” explains Yehia.
However, says Yehia, despite the obstacles, Nadeem is still her inspiration.
“As hard as it was in the beginning, the struggle was to help Nadeem feel better, not to be 'cured',” she says. “My position, very clearly, is that autism is one part of Nadeem, just like being a good writer is one part of me. He is beautiful and happy and is an inspiration to the whole family.”
El-Mohamady also believes that autism will not stop his son from being happy. “I know that maybe my son will not be the most successful person in the world,” he says. “But he can be the happiest and my goal in life is to make him happy.”
*This story was originally published on 3 April 2013.