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Addressing Autism Gains Momentum in the East

Addressing Autism Gains Momentum in the East
Autism prevalence is about 1–2 per 1,000 people worldwide, and it occurs about 4 times more often in boys than girls.

Most people relate autism to Dustin Hoffman’s eponymous portrayal of an autistic savant in the acclaimed Hollywood hit Rain Man. The reality is that autistic savants make up only one percent of the autism spectrum disorder.

Experts in the field say that although the movie gives a good characterization of autism, what it shows is just a drop in the ocean.

Although it is only now widely discussed, autism has never been a rare disorder and is in fact the third most common developmental disorder, even more common than Down’s Syndrome.

Typically, about 20 in a population of 10,000 people will be autistic or have autistic symptoms. Eighty percent of those affected by autism are boys. Genetic research indicates that shades of autism run in families. Autism is found throughout the world, in families of all economic, social and racial backgrounds.

Research has shown that persons with this disability are like individual planets in their own orbits. The rest of the world, as perceived by them, is often like an un-tuned radio channel – fuzzy and vague, fading in and out unpredictably.

Recognizing Autistic Children

Autism is a disorder of the brain that causes a lifelong development disability, chiefly affecting the communication and social abilities of people. Symptoms of the condition are evident either from birth or may begin to appear after a period of normal development, but definitely take shape by the time the child is two and a half years old.

Autism is known as a ‘spectrum disorder’ because the severity of symptoms ranges from a mild learning and social disability to a severe impairment, with multiple problems and highly unusual behavior.

Mythili Chari, founder of the Institute for Remedial Intervention Services (IRIS), one of the oldest NGOs working on the subject in India , says that, “A child with autism finds it difficult if not impossible to make friends, chat and even recognize another person’s feelings.

Language development is affected so that the child is unable to say even single words by the time he or she is two years old, or produce phrases by age three. Finally, autism causes the child’s mind to become obsessional. Autistic children pursue a topic they are interested in relentlessly and repetitively.

Families find it tough to cope. Love, affection, caring, sensitivity and other emotional responses that are the bulwark of all relationships are so absent in varying degrees that parenting becomes an immense challenge.”

Autism is quite different from other developmental disorders. Unlike mental retardation, autism is characterized by an uneven skill profile. A child with autism has very inconsistent development. He/she may start to develop normally and then seem to stop; may start to talk and stop; may have good motor skills or be very good in some areas and very poor in others. It is this inconsistency in development that is important to making the diagnosis of autism.

Also, while an individual having any other developmental disorder might learn in the same way as most of us do, but at a slower pace, an individual with autism learns things differently from most of us.

What makes autism a complex and unique disorder is the characteristic of severe sensory defensiveness, that is, they perceive the world differently. They may be hyper/hypo sensitive in one or many of their senses.

Therefore, people with autism tend to respond very inconsistently and differently to their environment, for example, they would not respond to a loud noise yet a drop of a pin could traumatize them.

Similarly, a gentle touch could disturb them yet a firm grip may be tolerated. Inconsistency is a hallmark of autism. Persons with autism may or may not at any time exhibit the behaviors we think of as indicative of the syndrome.

Social Intelligence

Individuals with autism have their core difficulties in the area of communication. About 50% of them do not develop speech. Even those who have a relatively good language development do not use it effectively for communication.

Individuals with autism also have difficulty in using and comprehending non-verbal modes of communication like gestures and facial expressions.

Researchers at the Autism Research Center in Cambridge University, U.K, used advanced brain imaging (fMRI) to show that when a normal person sees another person’s facial expression, the Amygdala (deep in the limbic system of the brain) responds strongly.

When a person with autism looks at another person’s facial expression, the amygdala remains silent. The social and emotional center malfunctions in the autistic brain. It leaves the autistic child socially isolated and detached.

Despite the lack of social intelligence, people with autism can have any level of ‘non-social’ intelligence. Many individuals with autism spectrum disorders have done brilliantly in careers involving logical or factual work – as researchers in subjects such as mathematics, advanced computations in software applications and so on, even though the basics of social niceties might be out of their reach.

One more area of impairment is in the way that people with autism relate to people/objects and to events in the environment. They have difficulty in initiating and sustaining relationships with their peers. It is not that they do not relate, it is that they relate in a different way. It is not that people with autism do not want to make friends, but often they do not know how.

Thus it becomes critical to teach them social skills. However some social difficulties remain throughout life. These social deficits are the most difficult to overcome.

The distinctions between different conditions of the same spectrum are other hurdles that must be crossed in diagnosis, care and treatment. An Autism Spectrum Condition occurs if a child shows social and communication difficulties along with repetitive and obsessional behavior.

If this is coupled with language delay, it is called autism. If retardation occurs too, it is still called autism. If there is no language delay or retardation, it is called Asperger Syndrome. If some but not all of the fundamental symptoms are present, the diagnosis would be that of ‘autistic features’. Of all these conditions, autism is the clearest to recognize.

India and Autism

Professionals working with autism find that one of the major problems faced by parents of autistic children is the difficulty in obtaining an accurate diagnosis. At India’s current population, it is estimated that there are 1.7 million autistic persons in the country. The majority of autistic people in India hasn’t been diagnosed and do not receive the services they need.

Says Chari, “A parent may take their child to a pediatrician only to be reassured that their child is just ‘slow’. Unsatisfied, they may visit a psychologist, to be told their child is ‘mentally subnormal.’

Convinced that their child does not fit the typical picture of mental retardation, they may visit a psychiatrist, to be told that their child has attention deficit disorder, and must be put on medication to control hyperactivity.

After months of sedation and unsatisfactory progress, they may again begin a cycle of searching for the correct name for their child’s problem. Some doctors may feel that nothing can be gained by a diagnosis of autism if the services are not there; yet, as more children are diagnosed as autistic and more awareness of the disorder spreads, there will be a demand for services.

Schools will be forced to educate themselves if they find that more of the population they serve is autistic. Admittedly, there are not enough services to meet the needs of mentally retarded children and adults in India, let alone those who are autistic. But that cannot be an excuse to ignore the special needs of autistic children.”

Says Gita Srikanth, founder-director of We CAN (Challenge Autism Now) Trust, another NGO that works towards raising awareness and understanding of the condition, “Autism is essentially a lifelong developmental difficulty that impairs an individual’s understanding of what she/he sees or otherwise senses.

Early intervention, assessment and counseling are critical. With specialized teaching and a constructive approach, people with autism can lead a meaningful and fulfilling life. It is not mental illness nor is it caused by trauma – it is neurobiological and its symptoms can be greatly reduced by early diagnosis and treatment.”

Indian Schools Open Their Arms

One of the measures recommended by professionals like Srikanth and Chari is inclusion of children with learning disabilities (covering dyslexia, hyperactivity and Asperger’s Syndrome besides the autism spectrum) in mainstream schools.

Vijaya Srinivasan, Principal of the Lady Andal School, one of the pioneering institutions that have attempted this in Chennai, says, “We started a Learning Center for children with signs of hyperactivity or attention deficit disorders. Assistance is provided in various ways, depending on the situation.

Also, the children selected have moderate disability. Other kids in the class become sensitive to the needs of the disabled. We found that it was not that much of a difficulty. We do have to pay greater attention to the safety and security concerns of the child, but we usually ask the parents to send a volunteer to oversee the child.

Other parents were initially reluctant but after awhile they too were convinced. It has been a good experience for us. We have a hyperactive child in Class I and, if the volunteer is busy, the other children watch over him protectively and say, ‘Ma’am, he’s run out of class, let me go and get him’. I see even very young children wait at the gate to push wheelchairs and help in other ways. We can all be a little more open about including children with disabilities in general schools.”

New Therapy for Autism

Applied Verbal Behavior is one of the latest and most effective methods used in the remediation of autism. This is a widely used, well-researched and accepted technique. Being a method that doesn’t require sophisticated equipment or teaching aids, it appeals to parents as well as professionals.

Its greatest strength stems from the fact that it can be implemented in the child’s natural environment. It also makes it easier for the child to apply his learnt skills in day-to-day living. Duncan Fennemore, who works in consultation with 35 programmes in the U.K, Europe and Middle East, in addition to his collaborative work in 7 other projects, was in Chennai recently to conduct a 2-day workshop on Applied Verbal Therapy.

He is the Director of CEIEC (the Center for Educational Intervention in Early Childhood), the first institution of its kind to be based in the U.K. He is also Training Director of the U.K.-based charity T.R.A.P (Training Resources for Autism Professionals) which is working in related areas.

Says Fennemore:

“Any individual can learn good behaviors and bad behaviors. Applied Verbal Behavior Therapy is as applicable to a typical child as it is to an autistic one. If I ask you to touch your nose and you touch your nose and I give you something you like, then your behavior the next time I ask you to touch your nose will be to do it.

That is reinforcement. If you do what I ask you to but I don’t reward you for it, and look away instead, then the likelihood of your doing it when I ask you to is sure to have gone down. Autistic children can learn good behavior and bad behavior in this way.”

“At the workshop, we discussed the science of behavior and how it is a very lawful science. You can guarantee certain contingencies will produce certain behaviors, whether good or bad. If you can recognize what these contingencies are, you can manipulate those contingencies in order to deal with a particular behavior. And you can guarantee 100% that anyone who applies it can alter individual behavior positively or negatively.”

“The main difference between cultures is that Eastern people tend to punish more than Western people. Generally speaking, Western people would try to explain their way through their child and his bad behavior whereas, typically, an Indian parent would punish the child variously.

Now, neither of those is particularly effective in the long run. What should happen is that there should be a consequence for that bad behavior and appropriate skills have to be taught to stop that behavior from happening again. If I have to throw a cup on the floor to get your attention, then that shouldn’t get me your attention.

But, subsequently, if you teach me that the way to get my attention is to tap me on the arm and say, ‘Duncan ’, then I have learnt a skill and I no longer have to throw cups on the floor. People in India tend to punish. They don’t add the good skills that must replace the bad behavior. And in the West, there is no consequence to bad behavior so it goes on undiminished. So both of them are wrong in their approach.”

“For people with autism, the challenge is how appropriate, how functional and how good their actual education is. In most special schools across the world, the education offered to autistic people is not adequate. In many areas of behavior, a lot of basic research is being done, which means we can reliably increase skills and address problems.

The shortfall is happening in the implementation. That, and secondly, the medical field is made up like pieces of a jigsaw and autistic people are not there in it yet. Research in the fields of biomedical interventions, neurological disturbances, and the influence of food, is still sketchy and evolving.”

 

This article was first published in 2008 and is currently republished for its relevance.


About Lalitha Sridhar

Is a writer and editor based in New Delhi, India. She is keenly interested in development issues.

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