WHAT IS AUTISM

From the start, most infants are social beings. Early in life, they gaze at people, turn toward voices, grasp a finger, and even smile. In contrast, there are some children who seem to have tremendous difficulty learning to engage in the give-and-take of everyday human interaction. Even in the first few months of life, many do not interact and also avoid eye contact. They seem to prefer being alone. They may resist attention and affection and do not respond to their parents’ affectionate behaviour by smiling or cuddling. Instead they appear to dislike being picked up or even kissed. Later, they seldom seek comfort or respond to anger or affection. Unlike other children, they rarely become upset when the parent leaves or show pleasure when the parent returns. They are no more responsive to their parents than to strangers. Parents who looked forward to the joys of cuddling, teaching, and playing with their child may feel crushed by this lack of response. This set of features is what is known as autism.

Autism is a brain disorder that affects an individual’s ability to communicate and make warm emotional relationships with people. There is usually a period of normal early development, but the disorder becomes evident very early in life - usually before the child is 30 months old. Autism affects all areas of social, psychological, emotional and language development.

It is characterised by the child’s withdrawal from any social contact, to the extent that he seems to be living in a world of his own. There is an inability to relate to other people and to respond appropriately to stimuli in the environment. Children with autism also take longer to learn to interpret what others are thinking and feeling. Subtle social cues-whether a smile, a wink, or a grimace-may have little meaning. To compound the problem, children with autism have problems seeing things from another person's perspective. Most 5-year-olds understand that other people have different information, feelings, and goals than they have. A person with autism may lack such understanding. This inability leaves them unable to predict or understand other people's actions. A phrase you will sometimes hear is "theory of mind" or "the theory of mind hypothesis". The basic idea of the hypothesis is that autistic people lack an awareness of other peoples' minds that typical people start developing at a relatively young age, i.e. the autistic person doesn't so readily develop theories about what is going on in other people's minds.

How is it caused?
Autism is not a mental illness as it was previously believed to be. It is also not a result of bad parenting. Autism is caused due to abnormalities in brain structure or functions. There may be a defect in the chemicals called neurotransmitters that transfer impulses in the brain. Injury to the child during birth may also be a possible cause of autistic disorders. However, the exact cause of the disorder is not known.

What are the symptoms autism?
The most commonly seen symptoms in an autistic child are:

• Avoidance of eye contact and abnormal staring as if looking “through” you
• Withdrawal from people by turning away his face or body.
• Hyper sensitivity to sounds – the child may cover his ears or try and burrow under pillows to block out sounds. The child may show extreme reactions to even sounds like the whirring of a car engine in the distance or the ringing of the telephone.
• Language problems – the child may initially begin to speak at the appropriate age, but there is soon a regression of speech abilities until finally the child stops speaking altogether. People with autism also tend to confuse pronouns. They fail to grasp that words like "my," "I," and "you," change meaning depending on who is speaking. For instance, when Raju's teacher asks, "What is my name?" he answers, "My name is Raju." Some children say the same phrase in a variety of different situations. One child, for example, says "Get in the car," at random times throughout the day. While on the surface, his statement seems bizarre, there may be a meaningful pattern in what the child says. The child may be saying, "Get in the car," whenever he wants to go outdoors. In her own mind, she's associated "Get in the car," with leaving the house. Another child, who says "chocolates" whenever he is pleased, may be associating his good feelings around this treat with other things that give him pleasure.
• Although children with autism usually appear physically normal and have good muscle control, odd repetitive motions may set them off from other children. A child might spend hours repeatedly flicking or flapping her fingers or rocking back and forth. Many flail their arms or walk on their toes. Some suddenly freeze in position. Experts call such behaviors stereotypes or self-stimulation.
• For unexplained reasons, people with autism demand consistency in their environment. Many insist on eating the same foods, at the same time, sitting at precisely the same place at the table every day. They may get furious if a picture is tilted on the wall, or wildly upset if their toothbrush has been moved even slightly. A minor change in their routine, like taking a different route to school, may be tremendously upsetting.
• There is a marked absence of pointing to objects in young children with autism. If a child wants to reach out for an object, he may grab an adult’s hand near him and then try and pick the object.
• A child with autism fails to show appropriate emotions or reactions to situations. He may not cry when hurt or may not be sad when his parents are not near him. The child may be averse to being picked up and may stiffen whenever there is an attempt to cuddle him. He does not play with other children and does not desire any company.
• Autism is often associated with intellectual retardation. But in some cases, the child may show extraordinary abilities of memory or skills. A few demonstrate skills far out of the ordinary. At a young age, when other children are drawing straight lines and scribbling, some children with autism are able to draw detailed, realistic pictures in three-dimensional perspective. Some toddlers who are autistic are so visually skilled that they can put complex jigsaw puzzles together. Many begin to read exceptionally early-sometimes even before they begin to speak. Some who have a keenly developed sense of hearing can play musical instruments they have never been taught, play a song accurately after hearing it once, or name any note they hear. Like the person played by Dustin Hoffman in the movie Rain Man, some people with autism can memorize entire television shows, pages of the phone book, or the scores of every major league baseball game for the past 20 years. However, such skills, known as islets of intelligence are rare.

How is it diagnosed?
Diagnostic proceduresTo date, there are no medical tests like x-rays or blood tests that detect autism. And no two children with the disorder behave the same way. In addition, several conditions can cause symptoms that resemble those of autism. So parents and the child's pediatrician need to rule out other disorders, including hearing loss, speech problems, mental retardation, and neurological problems. But once these possibilities have been eliminated, a visit to a professional who specializes in autism is necessary. Such specialists include people with the professional titles of child psychiatrist, child psychologist, developmental pediatrician, or pediatric neurologist. When parents learn that their child is autistic, most wish they could magically make the problem go away. They looked forward to having a baby and watching their child learn and grow. Instead, they must face the fact that they have a child who may not live up to their dreams and will daily challenge their patience. Some families deny the problem or fantasize about an instant cure. They may take the child from one specialist to another, hoping for a different diagnosis. It is important for the family to eventually overcome their pain and deal with the problem, while still cherishing hopes for their child's future. Most families realize that their lives can move on.
Parents are usually the first to notice unusual behaviors in their child. In many cases, their baby seemed "different" from birth-being unresponsive to people and toys, or focusing intently on one item for long periods of time. The first signs of autism may also appear in children who had been developing normally. When an affectionate, babbling toddler suddenly becomes silent, withdrawn, violent, or self-abusive, something is wrong. Even so, years may go by before the family seeks a diagnosis. Well-meaning friends and relatives sometimes help parents ignore the problems with reassurances that "Every child is different," or "Anju can talk-she just doesn't want to!" Unfortunately, this only delays getting appropriate assessment and treatment for the child.

How is it treated?
Today, more than ever before, people with autism can be helped. A combination of early intervention, special education, family support, and in some cases, medication, is helping increasing numbers of children with autism to live more normal lives.

Special interventions:
There is no medical treatment or cure for autism. The aim of treatment is to minimize disruptive behaviours and to integrate the child effectively into mainstream society. In order to achieve this, the treatment approach is multi-faceted. The earlier the treatment starts, the better is the chance of the child being effectively adjusted into the society.

Special education programs can expand their capacity to learn, communicate, and relate to others, while reducing the severity and frequency of disruptive behaviors. Medications can be used to help alleviate certain symptoms. Older children and adults like Paul may also benefit from the treatments that are available today. So, while no cure is in sight, it is possible to greatly improve the day-to-day life of children and adults with autism. Today, a child who receives effective therapy and education has every hope of using his or her unique capacity to learn. Even some who are seriously mentally retarded can often master many self-help skills like cooking, dressing, doing laundry, and handling money. For such children, greater independence and self-care may be the primary training goals. Other youngsters may go on to learn basic academic skills, like reading, writing, and simple math. Many complete high school. Like anyone else, their personal interests provide strong incentives to learn. Clearly, an important factor in developing a child's long-term potential for independence and success is early intervention. The sooner a child begins to receive help, the more opportunity for learning. Furthermore, because a young child's brain is still forming, scientists believe that early intervention gives children the best chance of developing their full potential. Even so, no matter when the child is diagnosed, it's never too late to begin treatment. Behavioural therapy in which a child’s behaviour is modified to minimize aggressive and destructive behaviours and enhance socially acceptable ones, is most effective. In this therapy, the child is rewarded for desirable behaviours and undesirable behaviours are discouraged until they become extinct. The rewards first start with concrete objects and are finally brought down to abstract things like verbal praise.
Speech therapy is started for the child as soon as possible. It consists of structured educational programmes in which the child’s responsiveness to sounds is moderated. Activities to improve the child’s eye contact are also used.

Many parents feel deeply disappointed that their child may never engage in normal activities or attain some of life's milestones. Parents may mourn that their child may never learn to play baseball, drive, get a diploma, marry, or have children. However, most parents come to accept these feelings and focus on helping their children achieve what they can. Parents begin to find joy and pleasure in their child despite the limitations.

Coping Strategies
The following suggestions are based on the experiences of families in dealing with autism.
Work as a family. In times of stress, family members tend to take their frustrations out on each other when they most need mutual support. Despite the difficulties in finding child care, couples find that taking breaks without their children helps renew their bonds. The other children also need attention, and need to have a voice in expressing and solving problems.
Keep a sense of humor. Parents find that the ability to laugh and say, "You won't believe what our child has done now!" helps them maintain a healthy sense of perspective.
Notice progress. When it seems that all the help, love, and support is going nowhere, it's important to remember that over time, real progress is being made. Families are better able to maintain their hope if they celebrate the small signs of growth and change they see.
Take action. Many parents gain strength working with others on behalf of all children with autism. Working to win additional resources, community programs, or school services helps parents see themselves as important contributors to the well-being of others as well as their own child.
Plan ahead. Naturally, most parents want to know that when they die, their offspring will be safe and cared for. Having a plan in place helps relieve some of the worry. Some parents form a contract with a professional guardian, who agrees to look after the interests of the person with autism, such as observing birthdays and arranging for care.

What is the status of this problem in India?

Autism occurs in approximately 1 out of every 500 people. With the current population, there are about 1.5 million autistics in India. The disability has been grossly under-estimated in this country and has only recently been included in the legislation. Autism has been recently included as a disability in the Persons with Disabilities (Equal opportunities, Protection of rights and Full participation Act), 1995. More special schools catering to the needs of the autistic are being opened. The government now recognises autism as a disability and is allotting funds for its better management. There are also individual support groups like Action for Autism, which have been set up to provide services related to the disability.

(Some parts adapted from the informational material available on the website of National Institute of Mental Health, USA)

Other resources:
Internet has a number of websites providing information on Autism. Some of them are listed below:

http://www.nimh.nih.gov/publicat/autism.cfm#aut3

http://www.autism-india.org

http://ashaforautism.com

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