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Tackling autism

The number of autistic children in the State is reportedly on the rise. Yet precious little has been done by the Government for management of the affected. SMITHA SADANANDAN reports...

Graphics: Manoj

ATTENDING A marriage function with her son, Sanju, is a nightmare for Sudha Menon, whose husband works abroad. The six-year-old looks adorable but runs around like a self-propelled buzz-saw making eerie, high-pitched keening noises, impervious to his mother's commands to "behave properly". Some onlookers sympathise. Others do not attempt to hide their disapproval by tutting loudly and declaring in a barely concealed voice— "The child is not normal!"

What the onlookers don't realise is that Sanju is autistic, and for him, instructions to "be quiet" or "behave properly" hold little, if any, meaning. The smallest of things, such as going to a park or shopping, present difficulties to parents of such children. "People are quick to pass judgements. Society has yet to make a sincere attempt to understand and accept these children," says Sudha.

Autism, a developmental disorder, is on the increase for reasons still unclear. For instance, the number of children diagnosed with autism and referred to the Institute for Communicative and Cognitive Neurosciences (ICCONS) centres in the State has more than quadrupled in the past five years -- from a 100-odd autistic cases in 1998 to more than 550 cases today.

Autism is known as pervasive developmental disorder (PDO) and is considered to be a result of neurological problems affecting the brain. The impairment of social interaction, communication and reciprocity, repetitive behaviour and abnormal motor behaviour are central to children on the autistic spectrum, ranging from mild to severe. Autistic disorder starts in early childhood (becomes apparent between the ages of two and three) and manifests itself as the child grows older.

Abnormal behaviour such as delayed or no response to stimuli, repetition of certain words or sounds (known in medical parlance as echolalia), reversal of pronouns (saying `you' instead of `I') are some of the many behavioural characteristics of autistic children.

"Instead of playing imaginatively with a toy car, an autistic child would spin its wheels or just sit in a chair and rock it for hours on end. This is because they are devoid of cognitive ability," explains Dr. Punnen Thomas, paediatrician, ICCONS.

Unlike other developmental disorders, autism does not have a cure or exact methods of early diagnosis. Though autism remains life long, children affected by autism can learn and function productively through a comprehensive training programme and treatment, point out experts.

"The seeming surge in the number of autistic cases and closely related disorders in the State could be the result of the broadening of diagnostic criteria, medical advancement and increasing awareness among parents," says Dr. P. A. Suresh, director, ICCONS. The ICCONS, which started in 1998, is the only centre in the State that offers exclusive treatment to autistic children. The institute, now, has centres at Shornur and Thiruvananthapuram. Each day, a new case or two is referred to its centres.

"We took our daughter, Ashni, to a number of doctors. They all convinced us she was fine. We lived with false hope all these years. Ultimately, it was a scan done under the recommendation of a neurologist that revealed that Ashni was autistic. This was some six months ago; we wasted precious time till then," says Yasmin Nawaz, mother of a three-year-old suffering from autism.

One of the biggest difficulties faced by such parents is obtaining an accurate diagnosis of the child's mental and physical health at an early stage. Often, the parents take the child to a paediatrician only to be reassured that "the child is fine". Dissatisfied, they take the child to a psychologist only to be told that the child is a "slow learner". A stopover at a psychiatrist's clinic may offer the parents a different explanation: "The child has to be put on medication to control hyperactive behaviour." Eventually, some neurologist offers the most plausible explanation: "The child might be autistic".

Not long ago, autism was assumed to be comparatively rare, affecting as few as five in 10,000 people.

Latest studies, however, suggest that as many as two in 1,000 kids might be affected with autism, which varies in degrees of severity.

Autism may occur in isolation or with one or more developmental disorders.

Studies have also revealed that boys are more likely to have autism than girls.

"A possible reason is that a disorder, fragile X-syndrome, associated with autism, is more common in boys than in girls. And about 40 per cent of children with fragile X-syndrome are likely to be autistic," says Dr. Suresh.

Children ought to be evaluated by a multi-disciplinary team comprising a neurologist, psychologist, paediatrician, speech therapist, learning consultants and other professionals who have adequate knowledge of autism.

"Parental input and development history of a child are important factors that aid accurate diagnosis," says paediatrician Dr. Elizabeth Mathew, Sree Uthradom Tirunal (S.U.T.) Hospital.

Therapies and integrated intervention programmes available in the State include behaviour analysis, occupational therapy, communication therapy, social-skill development and sensory integration therapy.

"Parents may, initially, find it difficult to accept that their child is autistic. But a joint effort on the part of therapists as well as families can go a long way in improving the lives of autistic children and adults," says Annamma George, speech therapist, Sree Chitra Tirunal Hospital.

Most parents are unable to comprehend the gravity of the situation and at times shun the autistic child. This could have an adverse effect on the therapy sessions, points out Dr. P. S. Mathuranath of Department of Cognition and Behavioural Neurology, S.C.T. Hospital. "The problem aggravates when an autistic child has unrealistic parents who expect the child to conform to the standards of `accepted social behaviour."

To compound the existing problem is the lack of centres with good infrastructure and trained staff, unlike in the West. This hinders their rehabilitation. "Moreover, parents must remember that autistic children are highly gifted in certain aspects -- they may have a very good IQ or may be good at mathematical calculations," says Dr. Mathuranath.

In recent years, there has been talk of the MMR (measles, mumps, rubella) vaccine, administered to children aged about 15 months, as being the cause of autism, but this has been disproved. Another misconception is the notion that autistic children do not register the faces of loved ones.

"This is not true. At D.C.M.R., we try to bring them back into society and work on the lines of Merry Barua of Delhi (Action for Autism). If the child does not point at objects, fails to speak two-word phrases or shows inability in fine motor coordination, parents ought to take note of it," says Fr. Thomas Felix who runs the Developmental Centre for Mentally Retarded (D.C.M.R.).

Their motto for autistic children is "maximum interaction and minimum isolation". But little has been done on the health front by the Government to help autistic children. Even the scientists have not been able to offer any convincing explanation regarding the cause of autism, so far. Genetic research indicates that some form of autism or related disorder runs in the family of an autistic person. In the midst of all the scientific and medical hypotheses being floated, the parents of autistic children are left to grapple with a bewildering array of problems affecting their autistic child. Yet, they do not lose hope.

Says Sherly Chandran, mother of a 16-year-old autistic and a staff with the ICCONS, "I know my son will not recover from autism, but I'm glad he has adapted to the therapy sessions so well. He has improved beyond my expectations and through the training, has begun to speak almost coherently and even sing too."

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