Mental Disabilities

About Autism

For the Rahuls, attending any function is a tall task. Their 10–year–old daughter Ritu fills the place with her high–pitched giggles. She is oblivious to the stares from the crowd. Her parents ignore the whispered comments her behaviour invites. Such things have repeated so many times that they have become immune to society's response.

Four–year–old Manu always throws a tantrum, kicking his mother and crying, asking her to open the bedroom door. When the trantrums don't yield result, he insists on going to the toilet. The door is then opened, and Manu gleefully enters and plays with the flush, using it repeatedly.

Vishrant has a unique obsession. He wants every door mat in the house to be put in order before he leaves for school each morning, even if it means missing his bus.

Ritu, Manu and Vishrant have autistism. The picture on autism, a disorder affecting various aspects of a child's development, is still nebulous. Genetics, environmental toxins, drugs, vaccines, wrong food and bio–chemicals are all being researched as possible culprits.

Whatever the cause, there is evidence that autism is on the rise, and on this, the global and the Indian figures are similar. The number of children with autism in the US in 1988 was one in 10,000, According to a 2005 report, this proportion increased to one in 500. And a very recent report in the UK put the ratio at one in 58. The increase is real, and not merely because of increasing awareness or because the definition of autism has undergone a change, medical practitioners say.

Some facts on autism

  • Autism is two times more prevalent among boys than girls.

  • The earliest signs appear by the age of eight months with clear indication by the time the child is three years.

  • Autism is not synonymous with mental retardation.

  • Autism may occur in isolation or with one or more development disorders.

  • Less than five per cent of autistic children have near normal intelligence.

  • About 10 per cent of autistic children are exceptionally gifted or high–functioning autistic.

  • About 25 per cent of autistic children have seizures for the first time during puberty due to the hormonal changes.

  • Many autistic individuals may be hyper sensitive because they have one or more of their senses impaired.

  • Roughly 40 per cent of autistic individuals can't tolerate certain sounds or frequency levels.

  • Approximately 50 per cent of autistic children do not develop meaningful verbal language.

Rama and Murali's case is an example. Their son Ananthakrishnan (Ananthu) was achieving all the delayed speech. “The elders attributed this to his being a boy. But he was indifferent to my leaving home for work or to my returning in the evening. Initially I thought Ananthu was comfortable with my parents–in–law who were staying with us. But slowly I began noticing that he stopped responding to his name on being called.” Says Murali.

Some even believe the symptoms are marks of a genius. Vikram, who hails from a family of accomplished individuals, had a delayed speech and was hyperactive, but had a remarkable level of understanding and knowledge of two. This led the family members Ashlin Sam will be able to attend mainstream school soon to believe he was a prodigy, though his mother Karuna, who knew the traits of autism, had a suspicion that her son might be autistic.

Traits misinterpreted

  • Autistic children do not respond to when called out. Parents most often interpret this as a hearing problem.

  • Speech is either not there at all or is limited, which is misconstrued as a speech defect.

  • They avoid eye contact and do not socialize. Parents attribute this to shyness.

  • Autistic children display repetitive, stereotyped behaviour, and a lack of interest in playing.

  • They are extremely sensitive about order, and are insistent on routines. A slight deviation from this would upset them, resulting in tantrums.

  • They are not aware of, or sensitive, to dangers. They are insensitive to pain, display hyper activity and crave for attention.

And finally, when the child is diagnosed autistic, the parents are thrown into an emotional roller coaster. The emotions range from shock, anger, the 'why me syndrome', guilt, helplessness, frustration, adjustment and, perhaps, acceptance at the end of it all.

Acceptance may be a very harsh term. I would prefer to call it adjustment because somewhere deep within them, parents feel the need for their child to become okay,” says Usha Ramakrishan, Chairperson, Vidya Sagar (formerly, The Spastic Society of India), Chennai.

Listen to how Rekha coped when she found her 10–year–old daughter Meenu autistic. “It was the first time we even heard the term 'autism”. She and her husband Balakrishnan began surfing the net. “After reading the first few lines, I just switched off the PC, feeling this was not happening to us.” When the confirmed diagnosis from NIMHANS, Bangalore came, they were shocked. “My husband coped better, though. It took me a couple of months to come to terms. It's eight and a half years since then, and today, I am a proud mother. It has transformed me from a meek individual to one who can stand up for a right cause,” says Rekha.

Most often than not, mothers feel the impact of the child's autism more personally than others in the family. Her challenge multiplies when she receives no support. In fact, coping with the child often leads to couples indulging in the blame game. Separation and divorces are not uncommon in such situations.

Family and friends can be a big help in caring for an autistic child. Jeena and Shaji say their son Ashlin Sam was diagnosed by Sri Chitra Hospital in Kerala with the disorder, after his nursery school teachers alerted them. Friends supported them, and acquaintances hardly commented on his strange behaviour. With adequate support from home and the special school that Ashlin attends, he might be able to attend mainstream school from the next academic session.

But not everyone is blessed thus. All too–often, well–meaning grandparents and relatives hinder an autistic child's learning process and progress by tutoring them inappropriately. This often leaves parents of autistic children, especially mothers, getting pulled in different directions.

Ironically, autistic children are very between their parents and tension–ridden surroundings, reveals Vasuprada Kartic, consultant psychotherapist and special educator, Deeksha Foundation's Centre for Psychological Consulting and Services, Hyderabad. Needless to say, despite all external inputs from therapists, special educators and the whole gamut of learning techniques, children in unfriendly environment do not make much headway.

A remedy to this is to strengthen the bond one has with the child, by appreciating his/her achievements, however small. Rekha and Bala say the day Meenu asked for chocolate when she was five was one of great joy for them. May be due to the support and acceptance he gets from home and school (Vidya Sagar), Ananthu is showing positive changes. “We have realised that he has special strengths. He grasps quickly and is very observant.”

Keeping children secluded is a mistake that most parents make, fearing the response of the world. Having no inhibitions to take the child out, and facing people's questions with “yes, my child has a problem” is a way to tackle the situation. For the child, too, such an attitude will do a world of good.

Karuna was such a mother, who took on all odds though she received no support from her family since Vikram was diagnosed autistic at four. The first therapist to evaluate Vikram only added to her misery by bluntly saying “your son has no great future”. Yet she stayed put, and went through the irritation autistic children usually show–towards loud noise, certain voices, glaring lights, lactose and clothes of some fabric. Vikram was also averse to learning, but was a master at the keyboard, and had extraordinary linguistic abilities. Karuna explored that.

As against general perception, autistic children show a talent for a particular subject, be it music, language or even maths. Meenu loves painting, and has a great eye for fashion. And, with a little guidance, she chops vegetables, grinds masalas and turns out delectable dishes.

Yet it is a hard truth that autism is a lifelong disorder for which there is presently no cure. Since no two autistic children are alike, inputs, too, have to be need–based. Early intervention programme, individual education programme, persistent and structured training mechanism, behaviour analysis, occupational therapy, communication therapy, social–skill development can all enhance the growth trajectory of an autistic child.

Also, it is time that we changed our perception of intelligence, says Ramakrishnan. A theory postulated by Howard Gardner in the 1980s, Multiple Intelligence, suggests that intelligence can be classified into eight broad areas: logical, musical, linguistic, naturalist, spatial, bodily kinesthetic, interpersonal and intrapersonal. Intelligence, thus, is not uni–directional, and cannot be measured by an IQ test. In the words of Gardner, “It's not how smart you are its how you are smart!”

Often, an autistic child is forced into acceptable behaviour with words and social interaction alone, without being aware of his special needs. This will wall him more and more from the world.

“We cannot understand that a 10–year–old, who has the social skills of a two–year–old, has the ability to do college level maths. We tend to correct his social behaviour, but do not exploit his mathematical skills,” says Vasuprada. And, it could also be that society itself is the culprit–some unfriendly social trait might be the cause of the 'unacceptable behaviour'.

Though most parents of autistic children taken things in their stride, a question always lingers in their minds: who after us for our child? “The National Trust Act of India has been formed for children with cerebral palsy. It focuses on creating support systems in terms of guardianship after the parents are no more. The focus is also on developing supports within the local community, among government official and by people with disability themselves.”

Thus, to empower an autistic child to live in dignity, maximum interaction minimum isolation are the keywords. As Karuna says, “There is nothing in a caterpillar that tells you it's going to be a butterfly. As parents, we have to bide the time and watch out for the day when our special child will blossom.”

Source: The World Within, The Week, Health (Supplement), Kochi, 27 January 2008.

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Down Syndrome and Exploitation

Two days ago we all learnt about a suicide bombing at Baghdad's two pet markets, in Iraq, that killed nearly 75 people, wounding 150 people and hundreds of birds and other pet animals. Many of you may not even have read it as these days we have all become immune to such suicide bombings and killings as they have become the daily news in all news papers! and we have lost the sensitivity to even grieve over such matters.

But the most horrible fact about these two bombings were the two suicide bombers were girls with Down's syndrome! and a person with Down's syndrome does not have normal intellectual capacity and he/she is a mentally challenged person. How can such a person willingly give consent to be a suicide bomber? Surely, the girls here must have been tricked into it! and that is the most tragic part of the whole incident. How can this be an act of “jihadi”? Would Allah praise such an act??

Many of you may have heard of the term “Down's syndrome”, but may not know what exactly the term refers to. Let me briefly explain.

Down's syndrome is a life long condition of disability that results in mental retardation. The retardation can be of mild/moderate/severe degree. It is a chromosomal anomaly called “Trisomy 21”in which there occurs 3 chromosomes in set 21 instead of 2 chromosomes. Human beings have 23 pairs of chromosomes (46 in total) in each cell of the body, except in sex cells, eggs and sperms, where only 23 chromosomes are present.

These 23 become 46 when the egg and the sperm get fertilized to procreate and the species continues with 46. These 46 chromosomes are arranged in pairs of two and there are 23 such sets. But in Down syndrome child, the 21st set of chromosomes contain 3 chromosomes instead of the usual two (totalling to 47) and this excess genetic material in each cell results in a dsabling condition called Down's syndrome, named after the scientist Langer Down who described this anomaly.

I have mentioned Trisomy 21 as the cause of this disability. In a small 2 to 3% of Downs syndrome, the cause is Mosaic Trisomy 21 that appears not in all body cells but only in few of the cells. Whether it is plain Trisomy 21 or mosaic, the features are the same and the degree of disability does not depend on the kind of the cause.

All children born in this condition share very similar facial characteristics that make them all look alike. They generally have a round, flat face with slanted eyes. They slant upwards and they have an extra skin fold on their eye lids that accentuate this slant. But they can have normal vision like anybody else. The babies have poor muscle tone and are floppy at birth. Slowly their muscle tone improves as they grow. It is also observed that these kids have a single crease running on their palm instead of the usual three deep ones that run on our palms (some normal kids also have only one crease on their palm, but not have down's syndrome).

They also have a large gap between their big toe and the second toe that usually grips the sandal. Their tongue usually protrudes outside as they have a smaller oral–cavity and a larger base of the tongue that keeps their mouth slightly open always. This may make them vulnerable to many respiratory infections.

Like in any other condition of mental retardation, these children also show delayed developmental milestones. Their motor (movement), speech and language, social and cognitive development are all slow. The condition can be detected at birth itself by the pediatrician and it is obligatory on their part to inform the baby's condition to the parents at that time. But unfortunately in India, many Downs Syndrome births go undetected or uninformed to parents that it may jeopardize early interventional strategies that can mitigate the damages to a large extent.

The condition can not be cured. But their abilities can improve to a very large extent by training that is given in special schools. A positive and an accepting attitude on part of parents, siblings and other relatives can help the child to a very large extent to improve its skills. These days many early intervention programmes are taken up at various special centres to children of a much younger age, as soon as it is identified. Physio therapy programmes can improve their muscles' and joints' strengths that improve their mobility skills and their gross and fine motor skills (bigger muscles and smaller muscles of the body). Most of them have speech delays and speech problems. They may lack clarity in their speech, articulation problems, language reception and expression problems that can be reduced through speech therapy.

Most of these children are friendly by nature and they draw attention from others through their smiling face and readiness to strike friendship with others. This also makes them very vulnerable and children need to be protected from any kind of abuse. Their social skills make them very endearing to all and they are very helpful in nature. Many of them love music and dance. Depending on their intellectual level, they can be taught functional academics that teach them the basic reading and writing skills. They are soon trained in vocations of their interest and later on as adults they can work in sheltered workshops under supervision. Some downs syndrome adults can lead fairly independent life.

As I mentioned earlier, they are prone to many respiratory diseases and many children have congenital (by birth) heart defects too. These children may have to undergo heart surgeries at a later date when they can withstand the surgery.

Coming to the sexuality aspect, they also have normal sexual desires like any other person. But their cognitive deficits may make them vulnerable to sexual abuse and exploitation. And as adults, they get isolated from the mainstream and this loneliness also makes them vulnerable to any kind of affection offered by the abusers. They need to be given sex education like any other person. The fertility rate is reduced in women with Downs syndrome and researchers believe that males may be sterile. But one case of a downs male fathering a child has been cited in journals.

Many females with Downs are fertile and there are many instances of them carrying their pregnancy to term and successfully delivering kids – either downs child or a normal child. These are cases from abroad and in India, it is very difficult to get such a person married and expect to carry out the responsibility of a marriage relationship and rearing a child. But it is not impossible with family support. Just because somebody is disabled, we can not deny them their marital and sexual rights. It is purely their family decision.

When such are the abilities/differences in their ability levels of Downs syndrome persons, it is highly condemnable that two downs syndrome girls' vulnerability was used and abused by the terrorist gang in Iraq and they have now fallen victims to their suicidal bombing pact!

Our heartfelt condolences to the families of these two innocent Down syndrome girls.

Source: Latha Vidyaranya: Down's Syndrome and Suicide Bombing at Baghdad, Iraq, 3 February 2008.

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