The following is a transcript of remarks delivered by Mrs. Datin Paduka Seri Romah Mansor, Spouse of the Prime Minister of Malaysia, at the 6th Annual World Focus on Autism held Sept. 26, 2013 in New York. Watch video of the event here.
[Malay Welcome] and a very good morning to all you. Madame Chairperson, Mrs. Ban Soon-taek, Spouse of the United Nations Secretary General, Her Serene Highness, Princess Charlene, excellencies, First Ladies, Madame Suzanne and Bob Wright Co-Founders of Autism Speaks, distinguished guests, members of the media, ladies and gentlemen: Thank you very much for giving me this opportunity to be a part of this forum on Autism.
I would like to share my thoughts on the fast growing developmental disorder and the plans to establish a center for children with Autism in Malaysia. In the United States, the Center for Disease Control and Prevention, or CDC, reported a prevalence rate of one in eighty-eight births in March, 2013. The prevalence rate has tripled since 2008. This rate is much higher than the prevalence of one case in every six hundred births reported in a study conducted by the Ministry of Health in Malaysia in 2004. This rate is much lower than the rate of one-in-thirty for South Korea, reported in 2011. The lower prevalence rate in Malaysia does not mean that the problem is any less serious. We believe that there is still a large number of children with Autism Spectrum Disorder, or ASD, who have not been diagnosed nor detected. The reason is most likely due to ignorance or lack of awareness of Autism in our society. More so, Autism is often misconstrued as mental illness, learning disability, or unruly behavior and worse it carries a social stigma. Other reasons could be under-reporting due to the absence of standard assessment tests for screening and the shortage of qualified personnel, particularly teachers.
My interest in Autism came about when I visited a center for children with Autism managed by a non-profit organization in Malaysia. I realize that despite all the good intentions to give the best to these children, the facilities and learning environment at the center were not conducive enough for the children’s development. The facilities were insufficient compared to Centers such as the Anova Center in San Francisco and TreeHouse in London, that I had visited. I also realized that many children with Autism are not receiving free and appropriate public education and will be left behind even if they possess high cognitive abilities such as in mathematics and science and exceptional talents in the Performing and Visual Arts. They are also deprived of comprehensive early detection services. Of the estimated 13,500 children with ASD, only 2,600 are enrolled in government special education schools or in the integrated and inclusive programs of the mainstream primary and secondary schools. The majority attend community centers operated by the Social Welfare Department of the Ministry of Women, Family and Community Development, others attend centers belonging to non-profit organizations or private enterprises which are beyond the means of ordinary families. The Malaysian National Autism Society reports an increased intake by thirty percent into the center and the waiting list keeps on growing longer. We know that ASD is not curable, but many studies have shown that early intervention has been proven to help these children develop optimally. Realizing the situation in Malaysia, we conceived the idea of establishing a center to provide early intervention and prepare these children for inclusive education in mainstream primary schools. They should not be deprived of the basic education that would help them develop optimally and lead a fulfilling life. It will be a private project and when proven to be successful we will roll out the project to other states in the country. This center will be known Permata Kurnia. Permata literally means jewel, signifying that children are the jewels of the nation. Kurnia means special gift. We chose this word to dispel the notion that these children are a burden to their families and society and also to work towards better acceptance. The Permata Kurnia project will join five other Permata programs that I had initiated six years ago, aimed at giving children a head start in life right from early childhood and nurturing their talents to their optimum potential. This is in line with my conviction that all children are precious and no child should be left behind. The Autism Center will be build in Kuala Lumpur, the capital city, with generous funding from the government, amounting to about 10 million US dollars. It is expected to be ready in 2015. In planning for the center we involve not only professionals but also parents because they are very dedicated and are willing to commit their time and energy for the center. In fact the architect that designed the Permata Kurnia is a mother to a child with Autism. Three types of programs will be provided.
The first is for 150 children with mild Autism, each between 4 and 6 years. And each child will be assessed to identify his strengths and needs. An Individual Education Plan, or IEP, is then drawn up to meet the child’s learning objectives as well as their ability. The progress of the child will be continuously monitored and documented. Parents form an integral part of the IEP team and their input and decision-making will be most encouraged.
The second program is for another 150 children, age 2 to 4, who manifest early signs of Autism. They will attend 2-hour intervention sessions per week for 40 weeks together with their parents or guardians. An individual family plan is drawn up for each child, which not only targets the learning needs of the child, but will also provide parents, with caregiving techniques that can be applied at home. With this plan parents will be empowered to give the best care for their children and maintain the wellbeing of the family, including a harmonious marital relationship. I would like to quote this example, that when I visited a Nova Center in San Francisco few days ago, I was informed by the founder of the center she gave up her accountancy profession and that after her marriage broke down, she dedicated herself to these children at the center.
The Third Program is Community Awareness and Training Programs. The Center intends to play an active role in educating the public enhancing the sensitivity of the community in supporting individuals with Autism as well as the needs of their families. And we are confident that as the level of awareness grows, the community would band together to tackle the issue of autism with better acceptance of these children and their families by the society. In addition to the public awareness program, we also provide the short course for educators, therapists, parents and the public on the various aspects of autism. We aim to equip teachers with best knowledge and skills so that all children will benefit from the establishment of the center not only those enrolled in Permata Kurnia. We will develop a curriculum that would take into an account the multilingual and multicultural aspects of our society. We will also develop modules to train teachers and therapists and a program for parental education and support. We will collaborate with Autism Speaks, which has a vast experience and networking in this area. As a matter of fact, we had a comprehensive discussion yesterday with Autism Speaks to ensure that our approach is evidence based and in line with good international practices.
Ladies and gentlemen, I would like to inform you that we have just launched Permata Specialist Children’s Hospital and the construction 250-bedded hospital expected to be completed by 2017. One of its niche areas is the Child Development Center, which will expand its current assessment and diagnostic services and as well as the intervention program for children with developmental disorders. The Child Development Center and the Autism Center will mutually complement each other. I hope to be able to share more with you once Permata Kurnia is operational, and in preparation for the center, we will be hosting an international conference on Autism in April 2014. Of course, we have decided together with Autism Speaks on this conference. It’s my pleasure to invite all of you to this conference and I hope to see some, if not all of you, in Kuala Lumpur next year.
Friends, please wish us good luck so that we are able to realize our dreams, objectives and hopes for these children. Thank you. [Malay Goodbye]