HEALTH

Coping with a disability

Dyslexia, a specific learning disability that is estimated to affect 10 per cent of school-going children, can be tackled if the education system gears itself to meet the challenge.

ASHA KRISHNAKUMAR

KARTIK KUMAR was an unhappy schoolboy. He could not read and aligning numbers was a problem for him. He changed schools several times, but to no avail. After he obtained a high IQ (intelleigence quotient) score of 125 in a test, he was termed "lazy", "pampered" and "arrogant". He dropped out of school in 1989 when he was in the eighth standard.

Diagnostic tests in 1992 revealed a host of processing problems in his brain, which explained why he mixed up letters and also sounds. He was dyslexic - he had a specific learning disability. A label being put on his problem did not end his trauma. He had lost precious years of schooling. He was nearly disillusioned with life by the time he joined a remedial centre run by the Madras Dyslexia Association (MDA).

Kartik, now 22, runs his own business successfully. But he is still unable to come to grips with the fact that he is a school dropout. Had the education system been geared to recognise his problem, he could have performed reasonably well in academics with lenient treatment in the matter of examinations, in terms of more time to answer questions and permission to use a calculator.

THE Tamil Nadu Government Order (G.O.) No. 47, issued on February 18, 1999, marks a progressive step towards helping children with dyslexia, which is now recognised as a learning disability. The order now allows certain concessions in school board examinations to children affected by dyslexia. Maharashtra is the only other State that has taken a similar step.

It is not known how many children in the country are affected by dyslexia. However, it is estimated that at least 10 per cent of school-going children could be affected by the disorder. Dyslexia remains largely undetected because it is a subtle neurological condition which escapes easy identification. The World Federation of Neurology defines dyslexia as "a disorder manifested by difficulties in learning to read, despite conventional instruction, adequate intelligence and socio-cultural opportunity". It is more prevalent among boys than among girls, and roughly the ratio is 4:1.

The problem can be genetic (developmental dyslexia) or acquired. Developmental dyslexia is caused by cognitive and neurological disorders. Acquired dyslexia is caused by external factors such as birth trauma, oxygen deprivation during birth, difficult labour, high dosage of medication during the first and last trimesters, hypertension in the mother during pregnancy, early childhood sickness, accidents resulting in brain injury, and epilepsy.

For a long time, dyslexia was thought to be a severe reading disability caused by brain damage. However, recent research has shown that it is a syndrome with many and varied symptoms which differ in intensity. There is evidence that learning disability can be caused by a simple signal-scrambling disturbance of the inner-ear (cerebellar-vestibular), which is responsible for all motor (balance, coordination and rhythm) signals leaving the brain as also the sensory and related cognitive signals entering it. No two dyslexic persons have the same symptoms. Some may have severe difficulty in reading, spelling or speech, while others may have problems with mathematics, memory or concentration. But many dyslexics suffer from an inner-ear dysfunction.

Dyslexia commonly implies difficulty with reading, writing, spelling, sequentialising, mathematics, memory, direction, time, speech and grammar and sometimes also hyperactivity, reduced attention span, phobia, mental and behavioural disorders and problems with balance and coordination. A dyslexic's difficulty with some of the major functions are manifested as follows:

Reading: A majority of young dyslexics referred for clinical evaluation demonstrate a visual and/or phonetic memory instability for letters and words. Many of them resort to guessing and even recalling stories by sheer rote. So, often their reading difficulty is not diagnosed for several years until the point where the reading rate has to increase to accommodate greater reading volume.

The sequential scrambling or eye-tracking dysfunction characterises the dyslexic reading process. This results in the omission or apparent disappearance of letters, words and even sentences from their proper positions. There are significant variations in reading memory. For example, some dyslexics read and recall scientific material more readily than the contents of novels. The reverse may be the case in others. Although most dyslexics dread reading aloud - as it would reveal their poor reading process - others remember or know what they see only if they hear themselves saying it.

As its mechanisms, symptoms and compensatory style show, dyslexia is far from being a simple disorder. It is too complex to be defined by reading IQ scores or by examining relatively small samples.

Writing: Writing skills are frequently delayed among dyslexics, and their writing will appear to lack coordination and reflect a difficulty to recall and use motor patterns. Words tend to drift in space. Some find printing easier than writing, while the reverse is true for others. Mirror-writing (d for b and p for q) is common among dyslexics.

Speech: Although some dyslexics are excellent with spellings, in general dyslexia is characterised by a significant level of memory instability, visual and/or phonetic. The letter sequence of words is frequently forgotten as fast as they are learnt. Directional disturbances complicate the spelling process. Letters and syllables are often reversed. Some dyslexics, whose speech is not affected, spell better orally than they do while writing.

Problems with memory, balance, coordination and speech functioning may intensify with age. Patients and clinicians sometimes mistake these symptoms for Alzheimer's disease, multiple sclerosis or brain tumours.

ALTHOUGH the symptoms of dyslexia were first recognised more than three decades ago, there is still no universal agreement on classifying the various manifestations of the problem. Doctors tend to focus on differences in genetics and brain organisation and function. Psychologists focus on dysfunctions in perception, processing, memory and attention. Teachers concentrate on specific areas of academic difficulties.

Research into dyslexia is getting closer to obtaining some concrete answers. The most promising clues are coming from brain research.

Research conducted in the United States by Dr. Martha Denckla at the National Institute of Neurology, Baltimore; Dr. Norman Geschwind and Dr. G. Galaburda of the Harvard Medical School; Dr. Drake Duane of the Institute for Development and Behavioural Neurology at Arizona State University; and Dr. S. Shaywitz at Yale University show the following:

* Autopsy of dyslexic brains shows deficiency in language centres.

* The blood flow in the brain of dyslexics engaged in linguistic tasks suggests a shift in linguistic analysis to other parts of the brain, which is not found in the case of a normal person.

* There is a clumping of neurons, which causes language problems in dyslexics.

* Unlike in a normal brain there is symmetry of the right and left superior temporal plane.

There is ample evidence to show that many dyslexic people have identifiable differences in the structure of the brain or its function, or both. For instance, a study by George Hynd, Professor of clinical neuropsychology at the University of Georgia, Athens, U.S., found that the front part of the corpus callosum (a broad band of nerve fibre that connects the two hemispheres of the brain) is significantly smaller in dyslexic children.

S. THANTHONI
At Ananya, the full-day special school run by the Madras Dyslexia Association.

Studies of adult dyslexics at the National Institute of Mental Health, U.S., showed that a specific area in the left side of the brain failed to get activated when a dyslexic tried to read. Dr. Judith Rumsey of the institute has found that many regions of the dyslexic brain have reduced blood flow during various other tasks such as repeating musical tunes.

John deFries, Director of the Institute of Behavioural Genetics at the University of Colorado, has found out that though as many as 20 genes may be involved in the reading process, two or three genes may account for most of the variation in reading difficulty in dyslexics. If these genes are identified, then the children at risk could be screened much earlier.

Until recently, the brain imaging procedure of positron emission scan was not used on children as it involved injecting material that was not considered safe for the young. However, a variation of magnetic resonance imaging (MRI), known as functional MRI (fMRI), is now used to analyse brain functions of dyslexic children. In this process, the oxygen level, which is an indicator of brain activity, is measured. Instead of the static pictures of conventional MRI, fMRI creates images of brain activity over a span of time. Dyslexia can be better understood when different regions of the brain are studied at different times, such as while resting, reading, sleeping and talking.

As no two dyslexic children are similar, individual assessment, attention and treatment are required. As there is still no cure for the neurological problem, affected children have to be taught to cope with dyslexia. This calls for special training. The MDA is one of the few centres in the country that offers such help.

THE MDA was set up in 1990 by a group of special educators and philanthropists and parents with dyslexic children. Although the MDA has kept a low public profile, it has been doing yeoman service by educating the public about the disorder. A non-profit organisation, which functions in a small rented building in Chennai, the MDA conducts awareness programmes for parents, teachers, doctors, psychologists, psychiatrists and the general public. Its most important task is to identify children with the problem. It is important that children who have a problem with the language and/or are slow learners should not be mistaken for dyslexics.

The MDA has established links with 11 schools in Chennai and four outside the city. It trains teachers and helps them identify dyslexic children as early as possible. Once identified, the children are assessed individually and categorised as mild, moderate or severe cases. If the problem is mild or moderate, the children attend one of the MDA's three remedial centres in Chennai for a few hours every week after school. In severe cases, the child is sent to Ananya, the MDA's full-day special school. According to MDA consultant Nirmala Pandit, these children are coached individually. They remain at Ananya from two terms to two years and are then sent back to their original schools.

At Ananya, the basic skills of reading, writing, spelling and expression, oral and otherwise and mathematics are taught. Training is given in strategies to learn science, social studies and so on. The focus is on concept building rather than following textbooks. There are 10 teachers and a few helpers and the teacher-student ratio varies between 1:1 and 1:3. The school now has 27 children, of which three are girls. The fees are variable. Some children who cannot afford the fees are sponsored.

D. Chandrasekar, who has been the secretary of the MDA for nine years, says: "If only we could get a bigger premises with some play area, as in the case of mainstream schools, we can not only take more children but also look into the multiple intelligence of children and start a full-fledged school." Only linguistic and mathematical skills are taught in regular schools. For dyslexic children, however, various other skills need to be developed as they may be adept in such other areas as boditic-kinesthetic intelligence (sports), spatial intelligence (art, computer graphics or architecture), movement intelligence (dance) and music intelligence. Many of Ananya's alumni are doing well in computer graphics, music, accountancy, catering and public speaking. Ananya coordinator Subha Vaidyanathan said than in all these cases, parental support was crucial.

Apart from working with mainstream schools, the MDA conducts workshops for non-governmental organisations (NGOs), university and school teachers, paediatricians, audiologists, neurologists, ophthalmologists, ear, nose and throat specialists and speech and movement experts. It conducts one-month-long, intensive training programmes three times a year. Any interested person can attend this programme. While many people are absorbed either in Ananya or in the MDA's remedial centres, some are sent as resource-persons to the schools associated with the MDA. The MDA participated in a special awareness programme conducted recently for the prinicipals of schools run by the Corporation of Chennai. Subha Vaidyanathan said: "In Corporation schools many dyslexics go undetected primarily because they are mostly first-generation learners." She said that if the children were found unable to read or write, parents thought that they were slow and pulled them out from schools. The MDA conducts awareness programmes over All India Radio and Doordarshan, and brings out newsletters. It has also published a resource book on dyslexia.

Awareness is most important, particularly as the problem is not readily visible. Subha Vaidyanathan says: "It is sad that even teachers do not know about dyslexia. It should be a part of the B.Ed course and every school should have a cell to take care of this problem."

The Vidya Mandir Higher Secondary School in Adyar, Chennai, set up a dyslexia unit in 1992. It caters to 27 children between the third and eighth standards. Every child spends around four half-hour sessions here during school hours for special training at the unit. The children get individual attention. The school also gives dyslexic students lenient treatment in the case of examinations. Lakshmi Srinivasan, who along with Chandra Tirumalai and Jayanthi Ranganathan runs the dyslexia unit, says: "Starting a unit in a mainstream school is inexpensive. All it needs is the will of the school administration."

The MDA is trying to convince the Directorate of Public Instruction (DPI) to educate more teachers about dyslexia. The MDA is also working with several hospitals in Chennai in order to get information on dyslexia included in the Continuing Medical Education programme. The MDA also prepares children for the examinations conducted by the National Open School. Two children passed the Board examinations last year; two have appeared for it this year.

S. THANTHONI
Ananya focusses on concept-building rather than following textbooks.

Nirmala Pandit says: "The recent Tamil Nadu G.O. providing extra time for dyslexic children to write the Board examination is one of the most progressive steps taken to recognise and help children with learning disability." There is still the need for more concessions. Every dyslexic child has a specific requirement: those with dysgraphia need scribes and those with dyscalculia need calculators, and those with a mirror-image problem need someone to read out the question paper to them. The answer papers should be evaluated for content without paying too much stress on spelling and neatness. There should be leniency even in the matter of the curriculum. Dyslexic children should be exempt from studying second and third languages. There should also be a provision to substitute one subject for another.

The Tamil Nadu G.O. applies to all Board examinations conducted by the State authorities. The MDA, along with some schools, NGOs and parents, is trying to obtain concessions within the Central Board of Secondary Education (CBSE) stream as well. As per the G.O., a team of specialists, including a special educator, will be set up to assess the concessions required in individual cases. Chandrasekar says: "It is here that a lot of care needs to be taken in setting norms and standards. The medical experts themselves need to be educated about dyslexia. The G.O. is really good, but everything depends on how it is implemented."

Nirmala Pandit says that the Rehabilitation Council of India does not recognise dyslexia as a special problem. The Centre, she says, should recognise the problem and offer concessions that are available to other special children.

Funds are another major problem area. The MDA has always run on a deficit budget. This is primarily because the MDA wants to cater to all sections, particularly the poor and the middle class. Nirmala Pandit says: "Although the MDA does not refuse admission to any child, it is difficult to accommodate more than 27 children in Ananya owing to space and budget constraints." Children on the waiting list are accommodated as and when a vacancy arises because a trained child has returned to the mainstream school.

Getting back into mainstream schooling is also a difficult transition for dyslexic children. Parents and the school play a significant role in helping them make the adjustment. The children need continual remedial aid.

According to Nirmala Pandit, dyslexia is manageable if it is identified early. After all, she says, General Patton, Winston Churchill, Hans Christian Anderson, Thomas Alva Edison and Albert Einstein were dyslexics.