Many inspiring Egyptian female role models participated in a two-day event to mark International Women's Day, including Maha Helali who advocates on behalf of people with autism, reports Amany Abdel-Moneim March is quite a women's month, with International Women's Day on 8 March, Egyptian Women's Day on the 16th and Mother's Day on the 21st, and perhaps this lay behind the British Council's decision to host a two-day event for women to raise awareness of gender issues and social inclusion under the heading of Equal Rights, Equal Opportunities: Progress for All. Among the many success stories presented at the event, one in particular stood out, being the story of Maha Helali, a graduate in economics and political science from Cairo University. Helali's journey with her autistic son bears witness to heroism and hope. "Heartache and worry first knocked on the door of my family back in 1993, when my son Mustafa was diagnosed with regressive autism," Helali recalls, whose only information about the condition at the time came from a 1980s' film called Sonrise. Mustafa was born in January 1991, and, a healthy child and born at full term, he engaged with the world around him and progressed normally until he was around 20 months old. Helali recalls that he was not always an easy child, since he did not sleep much and refused food with the exception of breast milk. Yet, it was only "after the first two years that we noticed that some of his abilities appeared to be regressing, and this was when we learned about autism," Helali says. Suddenly, a cascade of neurological events seemed to be washing Mustafa's abilities away, and he started losing many of his previously acquired skills. While he had used to sing and recite nursery rhymes and draw detailed drawings, such as a picture of a mosque and a minaret with a crescent on top, by his 20th month Mustafa had changed tremendously, withdrawing into himself and losing much of his speech even after speech therapy. It was also during this time that Helali lost her greatest supporter, her mother. "It was heartbreaking and depressing," she says. At three years old, Mustafa became hyperactive, and his love of repetition became more pronounced. Helali remembers feeling lost, and she decided to switch nurseries, the manager of her new nursery, a paediatrician, telling her that Mustafa might have Attention Deficit Hyperactivity Disorder (ADHD). Helali then consulted a psychiatrist, who observed that Mustafa had some autistic traits. "This was the start of a denial phase, since we were not ready to accept it and we didn't really know what it meant to have a child touched by autism," Helali says. Helali's ex-husband had Egyptian-British citizenship, so a visit to the Centre for Communication and Social Disorders in England was easily arranged. This centre is run by the UK's National Autistic Society, and Mustafa, then aged four years old, was diagnosed as Atypical Autistic. "We were advised that he should attend school for autistic children. Since we lived in Cairo where there were no schools of that sort this was a major challenge," Helali recalls. An alternative solution would have been for Mustafa to continue regular speech therapy classes with additional classes in occupational therapy. "We managed to find therapists, and I succeeded in establishing a 'support group' with two American ladies who also had sons touched by autism. One was high-functioning autistic, while the other had aspergers' syndrome," Helali says. Autism is a mysterious developmental disorder that causes a child to turn inwards and lose interest in the outside world. Autistic people often behave almost like everyone else, but they often lack language and social skills and they tend to be hyperactive and are prone to repetitive behaviour. Researchers believe that an autistic person's senses work differently from those of other people, and that this may be what causes their perceptions and behaviour to be different from that of others. Helali was told that Mustafa had "hyper-hearing", much sharper than the average person's, which explained why he couldn't sleep properly. He was hearing noises coming through the walls and from his own body. "In 1996, we flew to Belgium for Auditory Integration Treatment (AIT)," Helali remembers, a form of therapy that uses music to normalise hearing. As a result, "Mustafa started to sleep for six hours continuously for the first time in three years, and we all slept for a change," Helali says. However, back in Cairo, life was still a challenge. Mustafa's therapists quite often used to move on, and Helali herself was quite often tired of travelling in search of treatment programmes. Fortunately, "Lois Huntington, one of my friends in the support group, was always available with advice and encouragement," Helali says. "She helped in establishing an intervention centre for special kids in the US. She is an amazing parent who has dedicated her life to her son," and Helali considered doing the same in Cairo. Amidst all this turmoil, there was further bad news. Helali's father had leukemia, and this meant that she could not fully focus on her son. "I was preoccupied with providing my father with the help and care he needed in his last days. He passed away in April 1996, and I was in mourning for almost three months," she recalls. Later, she resigned from her job at UNESCO's Cairo office and started her own organisation, the Learning Resource Centre (LRC), which would help train therapists to deal with children suffering from autism and other conditions. Since the centre's foundation, it has helped children suffering from learning difficulties or behavioural problems, reaching out to almost 3,000 families over the past 12 years. However, getting a licence for the centre was a challenge, since the LRC was neither a school nor a charity. "Finally, we managed to follow the medical model of disability regulations in Egypt and applied for a licence from the Ministry of Health on the basis that we provided medical and para-medical services to children with learning difficulties," Helali says. Since 2000, she has been an active member of the Committee for Developing Occupational Therapy in Egypt (CDOTE), and the LRC has gained the support of the World Federation of Occupational Therapists (WFOT) to establish the profession of occupational therapist as a recognised individual health profession in Egypt. "In partnership with other parents who also had children affected by autism we succeeded in establishing the Egyptian Society for Developing the Skills of Children with Special Needs, ADVANCE, which started off as a diagnostic nursery under the umbrella of the LRC. This non-profit organisation, which I am currently chairperson and executive director, is registered with the Ministry of Social Solidarity." Helali explains that the goal of ADVANCE was to enrol children with autism for four to six weeks in a full-time programme and then to have them professionally diagnosed and establish an Individualised Educational Plan (IEP) on their behalf supporting their enrolment in mainstream education whilst continuing to provide them with the necessary therapeutic interventions. "Sadly, these kids were rejected by regular nurseries and kindergartens because of their condition, and Mustafa was among them," Helali said. ADVANCE then started its own day programme providing these children with an integrated programme specially designed to meet their academic and learning needs, as well as the necessary therapeutic interventions. Designing an up-to-date intervention programme in Arabic for children with autism and related disorders was quite a challenge, and though Helali tried hard to meet it, in the end she decided to adopt a Western programme, after modifying it to meet Egyptian children's needs. "I contacted Behavior Analysts Inc. in San Francisco, California, in the US, and managed to send four of our senior staff to attend their training programme and Assessment for Basic Language and Learning Skills (ABLLS)," Helali explains. After some revisions to the ADVANCE programme, the organisation was recognised by Behavior Analysts Inc. as a training site for ABLLS in the Middle East. ADVANCE now offers a complete support programme based on ABLLS and including other programmes like the Poretge Carolina Curriculum and Steps to Independence. Helali strongly believes in advocating for persons with special needs and striving for their acceptance and inclusion in society. People with special needs represent around 10 to 12 per cent of any population, she says, and in Egypt there are 7.5 million people with special needs. If these people are considered as living in families of four, then this means that around 30 million people can be considered as living lives touched by disability. Unfortunately, many such people continue to be legally and socially marginalised. Since Egypt follows a medical model of disability, children are categorised according to their IQ, reflecting school placement. However, Helali says, the Ministry of Education is able to cater to no more than 1.98 per cent of the disabilities from which Egyptian children suffer. Learning disabilities, speech impediments and dyslexia, autism, social and psychological issues, physical disabilities, multiple disabilities and brain injuries resulting from accidents are all rarely officially attended to. Helali, who has travelled with her son to the UK, Belgium and the US, realises that parents have the same worries and concerns everywhere. To her, there are no major differences between an Egyptian child with autism and any other child with autism elsewhere in the world. The only problem lies in society's awareness and acceptance of the child's condition. "For example, a child touched by autism in Canada would be fully accepted, but in Egypt he would be stared at, and his parents might be criticised for their upbringing of the child," she says. Mustafa is among the 70 per cent of autistic people whose IQ has been affected by the condition. He has developed a vocabulary, but he does not always use it unless he has to and is mostly non-verbal. He has been encouraged to use more words, to communicate with others and to follow verbal instructions. As a result of therapy, he can now attend a class session of 45 minutes without getting up, and he finishes the tasks he is assigned. Mustafa enjoys swimming, horseback riding and jogging at his club, and he is a happy young man. "I want him to live his own life at his own ability level, which I understand is going to be different from that of others," Helali says. Mustafa has recently turned 19, and he will soon join ADVANCE's Transition Into Adulthood Programme (TAP) to further develop his independence and functional skills. He will be able to learn at his own level and practise effective communication skills, work-related skills, and skills related to normal functioning, such as daily routines of hygiene and grooming and practical tasks like cooking and gardening. "Establishing an adolescents and adults programme for our children at ADVANCE as they reach adulthood is my new challenge," Helali concludes.
