Mahdi Saadawi leaves his house at dawn in Bi’r al Ashhab Village to travel 80 kilometers to the Civil Autism Association in Tobruk, 500 kilometers east of Benghazi.

Saadawi has recently earned a license in special education and teaches autistic children for three hours in one of the association’s classrooms.

Mahdi Saadawi leaves his house at dawn in Bi’r al Ashhab Village to travel 80 kilometers to the Civil Autism Association in Tobruk, 500 kilometers east of Benghazi.

Saadawi has recently earned a license in special education and teaches autistic children for three hours in one of the association’s classrooms.

The association was founded last December with the city activists’ efforts and support of its local council; it is the third of its type in eastern Libya. It is concerned with providing health and rehabilitation educational services to autistic children by developing their skills, arranging social activities, entertainment and sport activities as well as advocating for their rights.

Help for parents

The association Chairman Dr. Khalil Maayouf said the idea of establishing this association came in response to pleas of parents suffering from the absence of diagnostic clinics or governmental care centers.

According to Maayouf, the association detected 87 cases in the city out of a population of 250,000. Had they been able to conduct a comprehensive survey, he said, they would have detected a larger number of cases that people deemed as incurable or ‘disabilities’.

“Our branch in the city of Bayda, 300 kilometers west of Tobruk, has poor capacity that can barely take in the city’s children and it does not receive cases from outside the city,” Maayouf said.

Establishment phase

The association obtained its registration certificate from the local council only three hours after submitting the application. Its board of directors rented a two-floor building for 1,500 dinars (US $1,180) per month and paid for four months in advance from parents’ and members’ contributions in addition to some donations.

The local council paid the rent for the remaining eight months of the annual lease and supplied advanced equipment – the first of their kind in the eastern region – to rehabilitate patients with articulation and speaking disorders.

However, the foundation and launch phase was not easy. “We did not know how to operate the devices and we did not have the resources to train specialists at the association. The training costs were higher than the value of the devices themselves, in addition to the cost of traveling to a country like Britain and staying there for weeks,” Maayouf explained.

“The association conducted a training course for national staff, on the strategic methods of the learning process and skill-development of autistic children,” he added.

However, according to Maayouf, the 30-day course has not been sufficient in training the inexperienced young staff, which has prompted them to contract with an Egyptian specialist who will assume the job soon.

Being able to afford the Egyptian expert’s salary (more than US $1,500) remains the biggest concern of the association members due to the limited resources that prevented paying voluntary specialists’ awards a one-time award of 400 dinars (US $315) each.

As a result, the association submitted a request to Prime Minister Ali Zeidan during his visit to the city early October, but they have not received any response, according to Maayouf.

The Ministry of Housing and Utilities Urban Planning Department in Tobruk promised to allocate a 3,000-hectare plot to build a new center and the Real Estate Bank has promised to finance the project.

Lack of experience

The association’s maximum capacity is 50 children supervised by 18 junior specialists in two shifts. Nour, nine years old, is one of those children. “He is very clever and overactive which puts him in danger,” said his father, assuring that “he is very skilled with electronic games and exceeds his younger brothers at most games.”

The late treatment for his condition slowed down his improvement. “He still has difficulty in performing the simplest things, such as getting into the bathroom,” his father said, but has noticed a remarkable improvement since his son began treatment.

Mahdi Saadawi said he was not pleased with what he was able to offer his patient due to a shortage of time and resources, stressing that he personally was very close to a serious accident when he fell down from the balcony while trying to reach keys Nour had thrown after locking himself in.

Saadawi, whose family has four autistic children expressed resentment with the shortage in resources and expertise. “There is a shortage of everything; starting with classrooms, to specialists, and ending with devices and games that enable us to develop rehabilitation programs up to the desired level,” he explained.

 “As specialists, we need to be supervised because we lack required experience in this field. I am looking forward to the Egyptian specialist’s arrival because there is a lot for me to learn. Desire and enthusiasm are not enough, especially with a delicate job like ours,” he added.

Government reaction

Having spent 15 years as an employee at the Social Security Fund, Maayouf denounced the way the former government dealt with autism, especially since there were hopes to alter the way of dealing with such sensitive issues with the change of the regime.

Maayouf referred to a decision issued by Libya’s former Prime Minister Abdurrahim El-Keib to create three centers specialized in the treatment of autistic people, one in Tripoli in the west, one in Benghazi in the east and a third in Sabha in the south.

Maayouf described this decision as a “political decision” since he believed that such centers should be built in all cities because travel caused suffering and risks to patients’ families and to autistic children who needed rehabilitation in their natural environment as part of the treatment, in addition to the high costs of travelling every day.

While states’ attention to the citizens with special needs is a criterion of their advancement and civilization, the biggest challenge before civil society organizations is to raise awareness of these disorders and persuade people to bring their affected children without hesitation or shyness in order to give them a chance for rehabilitation so that they would help themselves and their parents to go forward.