Introduction

Maha’s idea is the full integration of autistic people in society based on their real needs and their degree of autism

Maha Helali’s idea is to integrate and include people with autism into Egyptian society by preparing them to reach their full potential, offering as much autonomy and as many choices as their abilities permit. These programs, combined with her parallel efforts to increase awareness and change discriminatory laws and practices through media campaigns, will allow people with special needs to be included in society and accorded their full human rights.

Maha provides people with autism the skills that enable them to function and enjoy more choices in Egyptian society, so that they can be integrated throughout their lifespan. These skills include basic life skills, adaptation skills, and vocational and academic education. Maha provides these life-long services through a center for people aged 2 to 21.

To ensure the full inclusion of people with autism, Maha works on changing the attitudes of different actors in society who deal directly and indirectly with people with autism. These actors include parents, medical professionals, teachers, trainers, and society at large. Through workshops, training of trainers (ToT), seminars and short courses, she provides parents, teachers and members of the medical profession with the necessary information and skills to deal with autistic people in a structured and appropriate manner. Through national events, conferences and by selecting April as Autism Awareness Month, Maha has broken taboos and spoken out very publicly, advocating for the full inclusion of people with autism.

People with autism; simply have different sensory perceptions that cause them to percieve the world differently than people without autism and thus react differently to it. As a consequence, people with autism have specific and special needs that must be met in order for them to live a fulfilling life and participate in mainstream society. In addition, a large majority of people with autism (75%) suffer from some form of mental retardation, which requires further attention.

One of the biggest problems in Egypt today is that autism is very often under diagnosed, or more commonly, misdiagnosed. Indeed, by comparing figures in different countries, it becomes apparent that perhaps as few as a quarter of autism cases are diagnosed as such. The World Health Organization states that 1 in every 500 children is autistic. Therefore, according to the latest demographic studies, we can deduce that there are more than 140,000 individuals in Egypt who suffer from autism, including 51,000 children.

Another major problem is that there are no programs in Egypt that train professionals to deal with the special needs of people with autism, on any level. The topic is not sufficiently covered in medical or psychology school, and occupational therapists, speech and physical therapists, have very little knowledge about the needs of people with autism.

A third problem is that in Egypt, only 3 to 5% of children with disabilities have access to educational opportunities. Only a few of these are children with autism. And because autism in not diagnosed properly and few people in Egypt know enough about it to give people with autism the care they need, autistic individuals are often isolated within their families, or segregated and placed in mental institutions where they are extremely poorly cared for and where there needs are not met.

One of the most challenging problems faced by any organization working for the rights of people with disabilities is the mentality of people in mainstream society. There is a lot of ignorance about autism, and there are many misconceptions about people with autism.

Taken together, the lack of proper diagnosis, the lack of trained professionals and care-givers, and the ignorance of the issue combine to make living with autism extremely difficult in Egypt, thereby making it necessary to tackle the issue in a comprehensive manner.

Until Maha founded the LRC in 1996, there were only a few organizations that specifically catered services to persons with autism, but their programs out of date.

Everything started for Maha in 1993 when nobody in Egypt was able to diagnose the condition of her young son. In retrospect, Maha realized that doctors and pediatricians in Egypt actually misdiagnosed her son Mostafa’s autism. As Mostafa grew older, she also realized that there was no institution or even programs in Egypt that could cater to the multi-faceted needs of an autistic child; this made her very worried about her son’s prospect as an adult.

In 1996, Maha founded a privately operated business, Learning Resource Centre (LRC), which caters to all special needs children. The LRC started by providing information and training to nursery and primary school teachers. The goal was twofold: to help schools identify children with special needs, and to know how and where to refer them and their parents. She soon realized that the biggest problem was to identify the children who have hidden disabilities, such as autism. She also noticed that special needs children who were supposedly included in mainstream settings were in fact segregated because they were not taught anything more than to rely on their shadow, or support teacher.
Thus, Maha founded the non-profit CSO, Egyptian Society for Developing Skills of Children with Special Needs (ADVANCE) in March 1997, which received its official government recognition in 1999. ADVANCE began by providing two types of day programs: one for children with autism, one for other special needs children. Very soon, ADVANCE grew to become a multi-faceted organization catering to special needs children aged 2 to 21 and their entourage, training staff, teachers, professionals and parents, and raising awareness.

Maha had to create an indigenous base of professionals who could cater to the needs of people with autism. Indeed, she found that there was very little information or knowledge in Egypt about autism and so she sought it in the West, by traveling extensively abroad. There, she visited specialists and centers that deal with autistic children and learned that people with autism can live very fulfilling lives if given the tools to develop their skills and potentials. She has successfully organized 3 types of training programs that now run successfully in Egypt.

The first is for educated young people, from psychology, psychiatry and even sociology backgrounds. The program aims at raising the quality of special needs professionals. Maha contracted with San Francisco experts to implement a program called ABLLS (Assessment of Basic Language and Learning Skills), built on Applied Behavior Analysis (ABA), which holds that autism can be treated behaviorally. Her application of ABLLS was so successful that its creator announced ADVANCE as the Middle East site for the ABLLS Training and recommended the organization for training and consultation to other Arab countries. The next year, in 2000, Maha translated and localized the ABLLS assessment tool and program to make it available for her Arabic speaking staff and parents. This was the first educational syllabus for children with special needs that were designed according to the latest and most advanced methods of teaching children with special needs. The second program is aimed at raising the awareness and educating people who work with autistic people, including parents. These workshops were organized on both the local and regional level as there were participants from Saudi Arabia, Qatar, UAE and Egypt. Maha also organized workshops to train parents of children with autism (in cooperation with National Council for Motherhood). Indeed, parents are at the forefront of the fight for integration of people with autism as they are closest to them. The third program was training university graduates to enable them do the job of “support teachers” (previously known as shadows) in order for them to support the inclusion of persons with special needs, including autism, in schools or in the community, and also to provide them with home-training support.

Maha has succeeded in creating the first knowledge base on autism in Egypt and the Arab world. Indeed, out of the 86 people she employs at ADVANCE, 83 of them are Egyptian; this would have been impossible a decade ago without her accomplishments.

Maha has plans, some of which are already being implemented, to offer vocational training, job coaching, and assisted residences. In order to fully cater to the adult population, she plans to create workshops that provide training older persons with autism on skills necessary for their employment. To date, she has devised three categories for adults. The first is “sheltered model”, where a person works in an extremely regulated environment and under a lot of supervision. The second is “enclaves model”, where there is some supervision and some assistance in daily tasks. The final is “job coach model”, where the individual is shadowed in the beginning of the job, but then left to act alone. Maha has pioneered by having three adults with autism from ADVANCE successfully placed in full-time paying jobs. One is a typist, the second is a social event organizer and the third is an administrative clerk. The success of these programs and the extent to which a person with autism can live a normal life is exemplified by the recent marriage of a higher functioning autistic person in the job coach category.

Offering such specialized training and services can be very expensive. The yearlong Day Program at ADVANCE costs about LE 20,000 and must be paid by the participant, even though Maha’s center is non-profit. Indeed, an integral part of her strategy is to create a model to be followed by the rich and the elite of Egyptian society as they are the policy makers, and their example is the most likely to be followed by other members of society. To break through taboos, she targeted these “trend setters” so that others follow their example in order for the model to be replicated. Nevertheless, in at least 10% if cases, those who cannot afford the cost of the program, in part or in whole, are given scholarship through Maha’s Scholarship Fund, and sponsors are found.

Today, the day program of ADVANCE offers a year long program with 34 sessions a week that cover all aspects necessary for raising the competence of persons with autism to achieve the integration of a person with autism. The program includes speech, occupational and physical therapy, vocational training, psychomotor training, academic development and cognitive development.

Maha realized that raising the awareness of different stakeholders is crucial to her long term strategy of integrating and including people with autism. She started the “Educational Conference” in 2001, which seeks to raise awareness of all special needs groups and not just autism in order to maximize participation. Her target groups are CSOs working in the field, teachers, professionals and parents.

In 2004, and through her role on a UNESCO Initiative, Maha started networking with other CSOs throughout the Arab world, collecting a database of all special needs CSOs and exposing the existence and work of ADVANCE. Her innovative idea of Autism Awareness Month has been running successfully every April since 2005. Maha has managed to use this conference to spread out and share her know-how and her model with CSOs all over Egypt. In 2005, the conference was held in Cairo, in 2006 in Alexandria and in 2007 in Mansoura. In 2008 it will be held in Assuit. Each time, participants from all over Egypt attended, including CSOs, parents and professional, many of whom come for the formal training Maha offers.

She ran media campaigns with TV and newspapers. She organized practical workshops about autism in order to present global updates, breakthroughs and advancements in the field of autism where parents and professionals were invited. She also cooperated in the Arabization and localization of the Autism Diagnostic Chart (CHAT) published for pediatricians in order to increase chances of early detection of autism and early intervention. Maha’s association was invited to participate in designing a five year development strategy for curricula development of Youth Centers. The plan is to spread the idea of inclusion of children with special needs within all daily activities and therefore increasing the chance of their inclusion within educational institutions and mainstream society. A tougher challenge remains operationalizing both Egyptian law and international conventions on the rights of people with autism and other special needs groups.

In the next few years, Maha intends to make her idea work all across Egypt by much greater awareness. She plans to continue creating a culture of inclusion through her awareness-raising campaigns on the national and regional levels, working with the media and lobbying to change laws. She also plans to expand her ToT programs with the ultimate goal of creating a Higher Institute for Disability Studies that will provide Egypt with a centre for teaching and learning that can spillover to other special need groups, and to society at large.

Her next step for scaling up is the replication of the model of ADVANCE. She is currently conducting an experiment in the Mansoura governorate, where members of her staff are going to educate and train the member of a highly motivated local CSO working on autism. This poor governorates will have more than 50% poor students with scholarships for which Maha already has funding. She has even found a potentially reliable source of funding in the Industrial Training Center (ITC), which offers to pay 80% of the training costs of professionals. Maha is also helping improve 6 other autism centers in the Middle East.

In 10 years, she wants to create a Higher Institute for Disability Studies. Her ultimate dream is that people with autism be given all necessary tools, and that Egyptian society be sufficiently accepting so that people from the full autistic spectrum are enabled and empowered to make meaningful life-choices

Maha Helali comes from a big family from the countryside that placed emphasis on education, autonomy and family values such as dedication, generosity and hard work. Her upbringing was very eclectic, as she spent her school year in Cairo, her summers in the country or by the sea, and often traveled abroad with her father.

Her parents granted her an excellent education. In terms of schooling, she attended a language school and later Cairo University, where she graduated from the Faculty of Economics and Political Science. In terms of “life-schooling”, Maha was fortunate to travel with her father to Europe, where she was exposed to other people and other cultures. She was also exposed to the diverse ways of life in the Egyptian countryside and the urban setting of her native Cairo.

Maha was always very socially-minded, as exemplified by her election to the university social committee, where she organized events to help disadvantaged students buy books and clothes, and later by her work at UNESCO.

A highly influential factor in Maha’s life was the role of her large family. Being born into a family of four children taught her to share and to look after the welfare of others before her own. At an early age, Maha was confronted with people with different needs, as her older cousin was handicapped with cerebral palsy. Maha also learnt firsthand what it means to care for a loved one, as she sat by her father’s deathbed in his ailing years and cared for her chronically ill mother. Both her parents suffered from recurring illnesses that required care and attention. These illnesses exposed her to malady and anguish, which, in a way, prepared her for her own son’s long term medical and developmental needs.

Maha and her husband lived in the Emirates for a few years and she helped start the Cambridge school and that experience would become invaluable for starting her center.

Mostafa was two years old when his parents noticed he was behaving differently than usual. Until age two, Mostafa reached the same milestones as other children, walking and talking on time. He used to sing and recite nursery rhymes and had a talent for detailed drawing –a skill he might have inherited from his artistic mother. Around his twentieth month, Mostafa started to demonstrate signs of inward withdrawal, seemed preoccupied and tended to daydream. It was a psychiatrist and friend of the family who first observed autistic traits in Mostafa. The official diagnosis came in England, when Mostafa was four.

While the difficulties of autism were already present, the real challenge began upon the family’s return to Egypt. Indeed, at the time, there was absolutely no comprehensive program or facility for children with autism. After several years and several therapists and incessant visits to Europe for treatment, Maha Helali decided to establish a center for special children in Cairo following models she had seen abroad.

In 1996, she quit a highly paid position had held for seven years with the Basic Sciences Program at the UNESCO Cairo Office. With two partners, Dr. Nasser Loza and Mrs. Beth Noujaim, Maha established the Learning Resource Center, aiming to provide services for children with special needs and their families.

In 1997, the LRC started a small diagnostic nursery for children with developmental delays, and later this developed to become the Egyptian Society for Developing Skills of Children with Special Needs (ADVANCE), for which she is Chairwoman of the Board. Since 1996, Maha has become intensively involved in advocating for special needs children and their rights, whether in Egypt or in other Arab States. On March 2006, Maha was recognized by the American University in Cairo for her efforts in advocating for, and providing services to, children with special needs and their families. In 2007, Maha joined others in establishing the Inclusion International – Middle East & North Africa-. Inclusion International is a global federation of family-based organizations advocating for the human rights of people with intellectual disabilities and their families worldwide, and to join efforts towards an Inclusive Society in the region.

Essentially, thanks to Maha, Egypt will have gone from having absolutely no services for people with autism to having an entire culture and sector exclusively serving people with autism. And as demonstrated by her incessant traveling around MENA and her position as the Arab world representative of UNESCO’s Education for All – Special Needs Education, she plans to export her idea and model to the rest of the Arab world.