(Vol.6 No.3 --- May 2001)

Hong Kong's Children and Adults with Dyslexia:
What Have We Done for Them?

For a century since the first published case of developmental dyslexia appeared in medical literature, neurologists, psychologists and educators have been puzzled by the inability to learn to read in persons with otherwise good intelligence and no history of neurological illness that might explain their plight. Limited understanding about these people's enormous difficulties to acquire literacy skills in the presence of adequate educational opportunities, has given rise to a variety of diagnoses ranging from "word blindness" to "minimal brain damage" to "specific learning disabilities/difficulties" and "learning disabilities". Researchers, practitioners, public policy and government officials and consumers continue to use a variety of these often equivocally defined terms, and to include different conditions under the category of "(specific) learning disabilities". Choices for such classifications are often based not on research findings but on philosophy and orientation.

In today's society, practically all aspects of formal education involve studying from books and writing for examinations. In adult daily life, work and leisure demand sophisticated reading and writing skills. The impact of this handicapping inability to read and write, if not given the appropriate attention, is devastating to affected individuals, and poses a tremendous cost to society that not only loses out on their potential contributions, but also through serious social burdens that may arise as a result of their personal failures.

What has Hong Kong done for her children and adults with reading disabilities (dyslexia) and other specific learning disabilities (SLD)? Today, these children in Hong Kong suffer the full range of problems that typically beset such individuals. Public awareness of the condition is low: neurologists, paediatricians, educators and neuroscience academics in Hong Kong, by and large, have yet to be familiarized with the condition which has incontrovertible neurobiological and genetic bases. These children's school failures are attributed to their "laziness" or other attitudinal problems, with subsequent parent child relationship erosion. Effective and structured educational programmes which are specific for the underlying deficits are grossly lacking, professional preparation in medical and allied health and education fields on the subject barely in place, and specific public policy to support and protect these children in education and adults in the work place non-existent. The myth of "mildness" that many professionals still hold fosters masterly inactivity, waiting for these children to outgrow their problems or somehow gradually compensate for them. Bright young children with dyslexia entering school in Hong Kong are currently faced with the almost certain fate of progressive failure in all academic subjects secondary to the failure in learning to read, followed by a dislike for school and learning, increasing problematic behavior and low self esteem, school drop-out - literally or figuratively by "switching off during class", and unfortunately for many, a future of negative social activities and affiliations as adults. Only parents of these unidentified and unsupported youngsters will be able to share their initial confusion, years of frustration and final disappointment, as the story unfolds for their children. This, in the light of the large body of scientific knowledge currently available on the

condition's nature and on effective measures for its early identification and intervention, is nothing short of immoral in Hong Kong's society, which should be able to support all children through effective education to fulfil their potentials as contributory adults in society. Adaptation of knowledge to suit Hong Kong's language and culture, essential as it may be, must start with a solid understanding of facts that have been already been discovered, on what needs to be adapted and on how to proceed.

How many children and individuals in Hong Kong are we talking about? International figures which are largely coherent across cultures and languages, place 5-10% of the population as having a reading/specific learning disability. Hong Kong's clinical and initial epidemiological data have so far been concordant, which leads us to the alarming figures of 40,000 to 80,000 children being affected within our primary and secondary schools, not to mention the prevalence within its adult society. Hong Kong still has to realize the stunning public health and social implications that this is having on us.

Medical and allied health professionals, especially those who work with children, must urgently be made aware and competent to serve them at respective levels of contact. In 1999, the Hong Kong Society of Child Neurology & Developmental Paediatrics formed a Working Group on Specific Learning Disabilities, with the mission of providing a platform where academics, practitioners and advocates can join efforts in moving the agenda for SLD in Hong Kong. Among other activities, a number of scientific meetings have been organized to share current practice, and to host world leaders who were invited to present up to date developments in the field. Among these were Professor AM Galaburda, Professor of Neurology of Harvard Medical School, who was instrumental in discovering cortical aberrations in the brain of dyslexic individuals, Professor Drake Duane of Arizona State University, neurologist and leading member of international research groups on reading disabilities, and Professor Leong Che Kan of the University of Saskatchewan, Canada, one of the world's few and respected experts in Chinese reading disabilities. Excerpts of their presentations, a Position Statement from the Working Party, together with local papers, are presented in this issue of the Medical Diary as a Special Feature.

As physicians, it is unthinkable to us that a patient, who has a medical condition that is scientifically understood and that has clear management guidelines, is given no treatment and left to deteriorate. But in reality, individuals with dyslexia and specific learning disabilities, which have equally clear pathophysiologies and intervention measures, are receiving minimal attention and help in Hong Kong. All relevant practitioners must now be called to action, such that affected individuals, children and adults, will be able to become fulfilled and productive members of our society.

Dr. Catherine C. C. Lam