Autism in the Media

Is Autism on the Rise?
The Telegraph
July 11, 2004

One in 500 Indian infants has it. That’s 20,000 new cases every year. An alarming increase, or stark figures brought to light by better diagnosis and heightened awareness? G.S. Mudur finds out

In three months, Purnima Jain will have to start turning parents away. Each month, typically 30 to 40 parents call at the School of Hope, New Delhi, that provides special education to children with autism, a disorder marked by unusual behaviour and lack of communication skills. “We want to maintain a teacher-student ratio of 1:3 and we’re going to run out of space very soon,” says Jain, principal at the school which moved into a new building just 10 months ago. “I feel really bad for the parents. There just aren’t enough schools for autistic children.”

Her plight stems from a steep rise in the diagnosis of autism across India in recent years. “The increase in autism we’re witnessing cannot be explained by better detection and awareness alone,” says Professor M.K.C. Nair, director of the Child Development Centre at the Medical College, Trivandrum, and president of the Indian Academy of Paediatrics. A decade ago, says Nair, his clinic would diagnose autism in a single child once a month. Now, it typically diagnoses autism in perhaps 10 to 20 children each month.

Unlike in the US and some European countries, there are no studies in India that document the rise in autism. “But it is possible that what we’re seeing in India reflects a global trend,” Dr Shobha Srinath, head of child psychiatry at the National Institute of Mental Health and Neurosciences (NIMHANS) told The Telegraph. In recent years, several studies in the US and Europe have shown an unexplained rise in the diagnosis of autism. In the US, California researchers have recorded a three-fold increase in autism over the past decade.

Doctors concede that part of the observed rise in autism is also the result of greater awareness among the public and better diagnostic strategies. That may have been brought about in large part by intense lobbying by parents-driven groups trying to sensitise the public and the government to recognise autism as a problem.

“There has been a sharp increase in awareness about autism,” says Srinath at NIMHANS. But sometimes this leads to inaccurate presumptions. When Rainman first played on Indian screens, hardly anybody in India knew much about autism. But when Koi... Mil Gaya was released, everybody thought — and mistakenly — that ‘Rohit,’ the character played by lead actor Hrithik Roshan, was autistic. The widespread speculation even prompted Roshan to deny that Rohit was autistic.

The presumed incidence of autism, one in 500 newborns, in India translates into more than 20,000 new cases of autism each year. It isn’t the staggering numbers alone that is worrying doctors and parents. “The infrastructure to deliver special education for autistic children is woefully inadequate,” says Merry Barua, founder, director of Action For Autism (AFA), a parents-driven group based in New Delhi involved in education, training and campaigning for the rights of autistic children and adults.

Experts estimate that there are probably just 10 schools in India that provide special education exclusively to autistic children. “For a long time, autism just wasn’t on the government radar screen,” says Barua. For instance, the Persons with Disabilities Act passed in 1995 did not cover autism and parents have found it excruciatingly difficult to get disability certificates.

Disability in India has traditionally been focused on physical disabilities. “It is easy for most people to empathise with someone who is blind or who lacks limbs. It’s hard to understand a developmental disorder — autism, in particular, because of the highly uneven skills in autistic people,” says Barua. An autistic child may be able to write excellent poetry, but won’t be able to talk. Another child may be able to do a three-digit multiplication in the head, but won’t be able to hold a pencil. Such variable patterns make it hard to evaluate and quantify autism — something required by law to be labelled as a disability. A government panel six years ago recommended changes to the Disabilities Act, but the law hasn’t changed yet. “Doctors appear to have a hard time recognising this as a disability,” says one parent who, after several frustrating weeks at the All India Institute of Medical Sciences, New Delhi, accepted a certificate that certified his autistic son as ‘mental disabled’.

“Early intervention can be crucial in autism,” says Srinath at NIMHANS. Vital ‘wiring’ in the human brain occurs in the first three years of life. Connections form between brain cells and some of this wiring influences the ability for social behaviour and communication skills. “Early intervention through the form of special education and behaviour therapy can alter the course of this disorder and can help some children go to regular schools and even get into mainstream life,” says Srinath. But early intervention hinges on rapid diagnosis.

Learning the Signs
There is no known cure for autism. Doctors say the most effective treatment so far is structured teaching aimed at early education to impart new skills that will enable the child to talk, interact, play and learn.

Typical symptoms of autism
• Difficulty in expressing needs or wants verbally or non-verbally.
• Repeating words or phrases rather than responding to questions.
• Making repeated movements such as rocking or hand flapping.
• Displaying a strong preference to routine, disliking any change in a daily routine.
• Displaying emotions, pleasure or distress, for no apparent reason.
• Not responding to questions by appearing not to hear.
• Displaying no interest in playing with children of the same age.

Indrani Basu in Calcutta still can’t forget the agonising decade when she visited the best paediatricians and psychiatrists in town trying to find out why her four-year old son was different from other children. She had noticed that he had difficulty following instructions in class, and he didn’t appear to play enough. One doctor censured her for working, another blamed her for pampering him, others labelled him as mentally retarded or hyperactive. One psychiatrist said he had childhood schizophrenia and prescribed medication.

It was only when, against the advice of her Calcutta psychiatrist, Basu took her son to NIMHANS, Bangalore, in 1998 that he was diagnosed, at age 14, as having autism. It turned out to be a relatively mild version of autism, something that might have been mitigated with early intervention. But in the absence of diagnosis for 10 years, no early intervention was possible. “Maybe it was because of their ignorance or lack of information, but they messed up our lives,” says Basu.

Rapid diagnosis would require higher levels of alertness among parents as well as doctors. A University of California, Los Angeles, study on the diagnosis of autism in India published earlier this year indicates that parents in India notice something different about their child about six to 10 months later than has been found for parents in the US.

“Norms about child development are culturally shaped and impact on when a symptom may be recognised as problematic,” UCLA psychologist Tamara Daley said in her study published in Social Science and Medicine. As a psychologist interviewed points out, a child that keeps quiet without emotions is sometimes interpreted as a ‘good child’.

A survey conducted by the AFA in the late 1990s among 1000 paediatricians across India revealed prevailing misconceptions. Half of the paediatricians wrongly believed that autism is more common among high socio-economic families, that emotional factors play a role, that it is caused by cold and rejecting parents — a decades-old theory that was junked by professionals worldwide.

But things appear to be finally changing, though at a pace slower than desired. Last week’s Union budget extended certain tax exemptions to people with autism. Delhi chief minister Sheila Dixit laid the foundation stone for a National Centre for Autism in New Delhi, an AFA project that will seek to extend education to a larger number of autistic children as well as train more teachers.

“The goal is to work towards helping them integrate into the community,” says Barua. At the foundation stone-laying function on Friday, Basu’s son, now 21, sang a poem: So what the hell I bite my hands/ How I can be strange in a strange man’s land/ I just don’t get your jokes/ Mindblind. Sometimes the colours can hurt/ I’m not really certain why I flap the lights/ But it’s me you’re with tonight/ Mindblind.

It could be in the genes

Head injury, emotional trauma, ‘refrigerator moms’, and a common childhood vaccine have been erroneously blamed at various times, but the cause of autism remains elusive, a subject of intense medical speculation and research. “No one knows the cause,” asserts Dr Shobha Srinath, head of child psychiatry at NIMHANS.

However, recent medical studies point to a genetic component of autism — people with autism appear to have an inborn genetic predisposition to autism. (Four out of five autistic children are boys.) Most scientists now believe that autism is the outcome of the interaction of genes and environmental offenders.

“The right question to ask is what environmental factors — chemical or physical insults — may be contributing to autism in children who are genetically susceptible to it,” Dr Isaac Pessah, a scientist at the University of California, Davis, told The Telegraph. “A possible answer may be the interaction of several genes and several environmental factors.”

There is evidence that many genes are involved in autism and a class of related disorders clubbed as autism spectrum disorders. Pessah is among researchers now scrambling to pinpoint ‘environmental offenders’ by investigating the connection between genes and environmental factors.

With colleagues at the UC Davis School of Medicine, Pessah is selecting autistic children and non-autistic children and examining their exposure to a broad array of factors — industrial chemicals, consumer products, illness of the mother during pregnancy and of the baby after birth, drugs, vaccines, as well as diet.

The scientists will also seek out correlations between possible exposure to such factors and the body’s biochemistry. While environmental factors have not been ruled out, the president of India’s paediatric community Dr M.K.C. Nair has asked doctors to keep in mind a possible association between prolonged exposure to TV in children below three years of age, absence of siblings to play with, and poor parental commu-nication skills.

Nair emphasises that these are not causes of autism, but could “make things worse” for children with inborn genetic predisposition.

The concept of cold parents, sometimes dubbed as ‘refrigerator moms’ has long been discounted as a causative factor for autism. “But it makes sense to suggest that such environmental factors may play a role in contributing to the severity of the disease in children who are autistic,” says Pessah. “There is good scientific evidence that very early behavioural intervention can mitigate some of the social and communication problems in some autistic children.”

Walk to raise funds for autism centre
March 14, 2004
Express News Service

New Delhi, March 14: A five-km walk was organised this morning to raise funds to build a centre to conduct research on autism and rehabilitate children suffering from the disorder.

Kathak dancer Shovana Narayan, a long-time supporter of Action for Autism, an NGO that has been trying to raise awareness on the developmental disability for over a decade, was part of the event.

Narayan strode along with the group even as a tiny girl helped hold up a banner that loudly proclaimed ‘Sponsored Walk for Autism-2004’.

‘‘I gave my students a lot of work to do and practice and I told them that they’d better get it done before I returned from the walk. I try and be here for every function that Action for Autism organises,’’ said Narayan.

As the group strode along, curious onlookers stopped to stare and policemen wondered what this procession was all about.

The second annual walk began from the grounds of Sanskriti School in Chanakyapuri at around 10.30 am and went through the diplomatic enclave in Chanakyapuri.

Merry Barua, Director, Action for Autism, said: ‘‘A walk is a fun way to raise funds. Many families joined us and many more were eager to come.’’

The money will go for the construction of the national centre for advocacy, research, rehabilitation and training. Barua said that currently the organisation operated from a small, rented building in Chirag Delhi Gaon. She added that this place had become inadequate given the demand for its services.

‘‘It is really difficult to raise funds for autism, because the children who suffer from this disorder appear to be normal,’’ said Barua.

The organisation is planning to lay the centre’s foundation stone in Jasola, behind Apollo Hospital, within the next month.

This school will be for autistic kids
Times News Network
February 6, 2004
Mridula Chunduri

HYDERABAD : Parents of six children suffering from autism, a developmental disorder, have taken up the task of starting a first-of-itskind school in the state designed especially for autistic children.

Autism is a lifelong developmental disorder that occurs during the first three years of life, where the child fails to develop communication and social skills.

"Our children are neither mentally retarded nor are they normal. So they do not fit into regular schools or special schools," said K Laxmi, mother of six-year-old Harsha, an autistic child. "They need a school where teachers can understand their disability and educate them based on their individual capabilities," she said.

There are no schools that cater specifically to autistic children, since they are good at something. While some grasp languages easily, others are good at mathematics.

"We need to recognise their ability and tap it," Laxmi said. All the children either go to regular schools or special schools that only cater to the mentally handicapped, where the autistic children are "treated as retarded and are only taken care of and not educated."

"Autism is a very individual-specific disorder. Each child has different capabilities and they need individual attention that no school can provide," said another parent child, K Subbalakshmi.

To overcome this problem, these parents have decided to start a school on their own, where they themselves will interact with the children on a one-to-one basis and help them develop their skills.

The six parents have pooled in funds and opened a classroom where they conduct group activities for their children. "Our aim is to provide a solid foundation for our children in academic education," said another parent Lata George. "We parents can share our experience and understand the various aspects of the disability. It will also help the child interact with strangers and his/her social mingling will improve," she said.

The school will become a fullfledged one only in the next academic year, by when these parents are planning to get trained by a Bangalore-based NGO that cares for autistic patients.

"We are hoping to collect enough funds by June 2004 to start the school for our children," Subbalakshmi said. Presently, these parents can be contacted at aaphyd@ yahoo.co.in.

"Autism was never considered a separate disorder, but all autistic children were treated as retarded children. It is only in the past two years that people are discovering that autism is a disorder," said Astha Kumari, an autism cell trainer at the National Institute for the Mentally Handicapped, Bowenpally, the only institute in the city that has a separate wing for autistic children. "A school such as the one proposed will be of great value," she said. What is autism?

Autism is a complex neurological disorder that impairs abilities to communicate, socialise, respond to emotion or express it. How is it diagnosed?

Autism can be diagnosed during the toddler or pre-school years, although some children are diagnosed at older ages. Lack of appropriate social development could be indications of autism.

Boys are three-to-four times more likely to have autism than girls. Autism occurs in all racial, ethnic, and social groups

Autism appeal to South Asian political leaders
Pakistan News Wire
January 6, 2004

ISLAMABAD, Pakistan: Ivan and Charika Corea, parents and carers of an autistic child and founders of the Autism Awareness Campaign, have appealed to SAARC (South Asian Association for Regional Co-operation) leaders currently meeting in Islamabad to take urgent action on autism.

Autism is on the rise in India, Pakistan, Bangladesh, Sri Lanka, Nepal, Bhutan and the Maldives - the countries within the SAARC region.

Ivan and Charika Corea initiated 2002 as Autism Awareness Year in the United Kingdom. Their campaign is now the largest ever movement for autism in the UK and has the support of the British Prime Minister, Tony Blair, and parliamentarians of all parties in the Houses of Commons and Lords in London.

"We need urgent action by the heads of state and national governments in the SAARC region to look into the rise in autism and find common ways and strategies in tackling the whole issue of autism," said Ivan, including joint educational and health strategies and the sharing of good practice from SAARC countries.

"We recommend the setting up of a SAARC Autism Committee comprising of officials from the SAARC countries to discuss ways forward," said Ivan. "We urge SAARC countries to launch a data collection initiative in their respective countries and provide public services for people with autism and Asperger's syndrome. We recommend a common strategy in relation to the training of special educational needs teachers and specialist speech therapists in the SAARC region."

He appealed to political leaders to "reach out to the autistic community in the SAARC region. Autism is a time-bomb waiting to happen. If there is a rise in numbers of people with autism in South Asia, are SAARC countries in a position to provide public services for these people who have a very specific disability? Have staff been trained? What about the dissemination of information on autism and Asperger's syndrome in the major languages of the SAARC region?

"There are only a handful of organisations in the voluntary sector who are in a position to help the autistic community. National governments must provide support services for all people with disabilities. We need new ways of thinking where disabilities in the SAARC region are concerned."

`Autism still remains an underdiagnosed disorder'
The Hindu
Shonali Muthalaly

CHENNAI DEC. 16. 2003

The World Health Organisation states that one in every 500 persons suffers from autism, meaning an estimated two million Indians battle the disorder everyday. In spite of the vast numbers involved, the condition is often wrongly diagnosed. Either doctors fail to identify the problem in time or parents ignore vital clues, assuming that their child will eventually grow into a healthy adult without any help.

Autism affects the normal development of brain with regard to social interaction and communication. While all autistics have a social deficit, which means they are unable to relate to other people, about 50 per cent do not develop speech.

Unfortunately, the disorder is frequently overlooked, misunderstood and wrongly categorised in India, according to Gita Srikant and Hemamalini Jairam, who run `We CAN' (We Challenge Autism Now), a centre that works with autistic children here.

"Ten or twelve years ago, people believed there was no autism in India, because paediatricians were wrongly diagnosing the disease. Parents were told that their children were mentally retarded, or that they had `childhood schizophrenia', a condition that does not even exist," says Ms. Hemamalini. Today, not much has changed. While more information is available for parents on the Internet, most of them are still misguided by healthcare professionals, according to We CAN. At least 70 per cent of the autistics come to them sedated on an array of drugs, although autism needs no medication.

Late diagnosis is another problem. Ideally, an autistic child should be put on an `early intervention programme' by the time he or she is 18 months old. In reality, autistics are brought to special schools only when they are much older, which makes teaching considerably more difficult. We CAN, for instance, meets about two new autistics a week, and a good number of them are in their teens. As some autistics are very intelligent, they can excel in areas such as academics and computer science, where not much social interaction is required, provided they are properly trained. In fact, one per cent of all autistics are `savants,' which means they are exceptionally gifted in one area, for example in mathematics.

We CAN, one of the few centres in the country that deals specifically with autism, has just about 12 children. It is unable to admit more, because each child needs a lot of individual attention.

"We do not want to grow beyond fifteen children, and there's already a waiting list," says Ms. Gita, adding, "We are trying to encourage people to open similar schools in different parts of the city. If you live in Vadapalani, you cannot bring an autistic child all the way to our centre in Besant Nagar, here."

The Rehabilitation Council of India acknowledged the need for an autism-specific training for teachers only last year. At the moment there are just a handful of established institutes for treating autistics. As diagnosis improves and awareness spreads, a demand for schools for autistics is expected to rise.

Autism is still not included in the country's Disability list. "Till two years ago, the Government was not even convinced it existed," says Ms Hemamalini. "Even today, if you want train travel concession, you have to misrepresent your child as mentally-challenged."

Awareness month
We CAN is organising an `Open House' to observe an awareness month on December 20 and 21 to discuss autism and the teaching methods used.

On January 7 and 8, it will hold a workshop on verbal behaviour, which will be conducted by Duncan Fennemore, a consultant on behavioural interventional programmes for children in the United Kingdom, Europe and the Middle East. For more details, We CAN may be contacted at 24461013.

Telltale signs
Lack of eye contact
Apparent lack of response when called
Speech delay
Difficulty in peer group interaction
Difficulty in communication - verbal and non-verbal
Inconsistent responses to situations

Diploma course for autistic children
Times News Network
November 1, 2003

NEW DELHI: In the first step of its kind, the Rehabilitation Council of India (RCI) has launched a year-long diploma course in autism spectrum disorders to address the educational requirements of children with autism.

It has been a long-pending demand and this course, a diploma in special education, is a pre-service teachers training programme. The qualification for enrolment is Class XII or its equivalent.

Two institutes selected to run the course are Delhi-based Action for Autism and School of Hope, Tamanna. The two other centres are the Spastics Society of Karnataka and Mind's College of Educational Research in Mumbai.

The RCI, in charge of the regulating training policies in this field, says that given the benefits of intensive early intervention in preventing the ill-effects of autism, the course aims to mainstream children with autism by creating professionals who will use structured strategies and give intensive training to them. Approved by the RCI on a pilot basis, the course curriculum has been developed with the help of special educators, policy makers and parents

Talking Autism
Times of India
September 30, 2003

Rita Jordan is a Reader in Autism Studies at the University of Birmingham, UK. She has worked as a teacher and research officer in the field of special needs, concentrating for the last 23 years on individuals with autism — a neurological spectrum disorder which generally manifests itself first in children between the ages of 18 and 24 months. The initial symptoms include the child's lack of response to his or her name being called and other language and communication impairments. In New Delhi recently for an international workshop, she spoke to Madhusudan Srinivas :

Where are we in the field of autism today, both internationally and here in India?

India has begun to move forward in terms of the facilities available. East or West, the myths about autism are beginning to disappear. It is being realised that autism can hit any kind of family. In the past, autism was "rare". Not so, any more. It is now acknowledged that autism affects a wider group of people than was thought to be the case earlier.

Why has this happened?

Instead of autism, we have begun to talk of ASD, or autism spectrum disorder. In the sense that instead of being a specified disorder, identifiable by a specific set of 'symptoms', there is now a wide-ranging list of indicative signals, as it were, which come to be categorised as au-tism. This acknow-ledgement that it is a spectrum disorder has led to an increase in the number of cases being diagnosed. Recent research in the US and the UK suggests that about one person in 160 all over the world is autistic. Relative to India's population, that could mean a huge number of autistic people. Even in the UK, we are not equipped to cater to that kind of need, in terms of initial diagnosis and counselling, special aids for specialised learning and teaching, and support for the integration of adult autistic individuals into society.

Among all these challenges, which is the most important?

Early intervention makes a vital difference. The sooner you have a diagnosis and the sooner parents can prepare to face up to it, the better off everyone is. Most people with autism require some form of social support as adults. While in the West this support has come from setting up homes (some of which, depending on their level of ability, are run by autistic individuals themselves), India has a different social structure, namely, a joint family network — although it is now slowly crumbling. Families which have children or other individuals with autism too must be supported. Not everyone can provide lifelong support to the individual with autism. It must also be remembered that some autistic indivi- duals require complete and life-long support. While some need help even with basic personal needs, others can be productive and contribute meaningfully to society.

What is the argument in favour of social support?

It is a matter of responsibility as well as in the best interests of society to invest wisely and well in the welfare of individuals with autism, including their families and caregivers, and the institutions which help in all this. An overall cost-benefit in this sector works out to a plus only when you invest all around right from the beginning , i.e. diagnosis, and early intervention, rather than provide homes for adults with autism on the lines of old age homes. You have to factor in the effects of what might happen if we don't invest now. If there is no proper education and support, the cost to society will be huge in terms of the burden on the mental healthcare system, the breakdown of a large number of families (the consequences of which will anyway impact on society, in terms of money as well as morale). What's more, such individuals, if not cared for and nurtured, may often end up being violent. Many stalkers could be on the autistic spectrum. They don't mean harm but they end up doing harm. The cost of incarceration is tremendous — especially in comparison to the cost of early diagnosis, intervention and support system. The effects of autism could range from extreme beha-viour to what is perceived as routine bullying in the school toilet. There has been an actual instance of an autistic boy who was unable to take it and pulled out a knife in school toilet since the female 'shadow' couldn't accompany him into the boys' toilet. Nobody knew how he got the knife. The other risk is that autistic individuals are so guileless that they can get 'set up'. They also find it very hard to speak a lie.

Can you comment on the different methods on offer for teaching children with autism?

After going up a lot of blind alleys, the Autistic Society in the UK concluded that parents are the key, and that there is no single size that fits all — experience alone can provide the answers.

What about the question of mainstreaming versus segregation?

Integration definitely is desirable. We shouldn't build isolated places where parents or caregivers also become isolated. The ideal setting for teaching children would be a resource base within a mainstream school, as part of the school. In India, the immediate need is for some centres of excellence — ironically, special schools should be working frenetically at making themselves redundant!

Special autistic section to come up at GIMRC
Times News Network
September 27, 2003

CHANDIGARH: The Government Institute for Mentally Retarded Children (GIMRC) is likely to have a separate section for children battling autism.

The decision to start a separate autistic section was taken after a detailed discussion between parents of autistic children and doctors from the psychiatry department of Government Medical College and Hospital (GMCH) held on Saturday. The meeting was attended by 20 families with autistic children.

GIMRC joint director Prof B S Chavan said that autism has not been included in the Persons with Disability Act, 1995, as one of the disabilities as a result of which parents are finding it difficult to obtain a disability certificate and are denied various concessions and benefits.

Therefore, after detailed discussions, it was decided that the parents of autistic children through their association - Parents/Guardian Society for Welfare of Mentally Challenged Children - would write to the chief commissioner (disability) to include autism as one of the disabilities in the Persons with Disability Act.

Moreover, keeping in view the shortage of teaching staff at the GIMRC, parents have decided to employ a special educator at their own cost.

Interested candidates having requisite training and experience in the area of autism may contact Prof Chavan on 647760, 621342, 891408.

Tackling autism
The Hindu
Smitha Sadandan
June 9, 2003

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."

Born different-- Autism: Early diagnosis and intervention help
The Week
March 9, 2003
By Rashmi Saksena

Autism was just another word for Meena till six months ago when her son Siddhartha was diagnosed with the brain disorder. As the three-year-old sits with eyes downcast, seemingly unaware of the bright red toys around him at Open Door, the Delhi school for autistic children he attends, the only comfort for Meena is the knowledge that she is not alone. Around two million in India are autistic.

Reaching out for help: An autistic child at Open Door in Delhi

Described as neuro development spectrum disorder because symptoms range from mild learning and social disability to severe impairment with multiple problems, autism remains a low profile disability. The word autism was first used by Dr Leo Kanner, a psychiatrist at Johns Hopkins University, to identify a group of children who were self-absorbed and had severe social, communication and behavioural problems. The Government of India recognised autism as a disability in 1999 by establishing The National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities, under the ministry of social justice and empowerment.

Parents still have to knock at many doors before they get an accurate answer to what makes their child different. "My son reached his milestones in time but did not speak till he was two," says Meena. "Some said he is a late speaker. Our paediatrician did not bother about it. Only when we mentioned autism did he look at the possibility."

Says Merry Barua, credited with putting autism on India's map by founding Delhi-based Action For Autism (AFA): "Most autistic children are not diagnosed." Merry's 22-year-old son Neeraj is autistic. "I went to leading paediatricians because I felt there was something wrong with my baby. He did not speak or play and just walked around in his nursery school. Once I was late by three hours to pick him up and I was told that he had not once asked for his mother. But no doctor could diagnose."

When Neeraj was four and a half years old, Merry met a friend who was trained in the UK as a special educator for children with special needs. She advised Merry to see a psychologist who worked in Kolkata and Canada. Neeraj was diagnosed as autistic "but there was little information about the disorder". To know more, she read books on the subject. She trained and worked in the US as a teacher for autistic children, and visited special schools in the UK, Denmark and the Philippines before setting up a classroom back home for her son. Another girl with the same disorder joined in.

Merry started AFA, a non-profit organisation, in 1994 and the demand for services has kept her busy ever since. AFA conducts training workshops for autistic children and their parents. Her Open Door is India's only model school for autistic children. AFA networks with six organisations in India and one in Nepal to train parents and professionals, and plans to set up a national centre for advocacy research and training for autism in Delhi.

Shakeela, a teacher from Ladakh, took her 7-year-old daughter Asma all over India for a diagnosis. Asma does not establish eye contact, flaps her hands and can barely communicate. A doctor in Chandigarh directed her to Merry.

If Puja's neurologist uncle had not come visiting she would probably have not discovered why her son Rishabh at two and a half years did not speak and respond, though he had passed a hearing test. "My uncle told me to go to NIMHANS," says Puja. "They gave a diagnosis in two minutes."

Priya was worried when her 6-year-old son Manish showed a "different behaviour". When no doctor in Jamshedpur, where they lived, could diagnose his condition she took him to Delhi.

Life for her has completely changed after the diagnosis, just as it has for Puja, Shakeela and Meena who moved to Delhi to train their children at Open Door. "Parents of normal children and teachers don't understand," says Priya. "Some tell children not to mix with the odd one. We mix only with each other because we understand each other's problems."

"Autistic children look normal, so people find it difficult to accept them as disabled," says Aloka Guha, chairperson of the Trust, which recently organised a medical seminar in Delhi. "Severe cases get clubbed with the mentally retarded. We are sensitising people through our 369 committees across the country."

Though awareness about autism leaves much to be desired there is a dramatic increase in the number of cases in the last decade. "In India diagnosis is happening but research is lacking," says Dr Vrajesh Udani, a paediatric neurologist and epileptologist at P.D. Hinduja National Hospital in Mumbai, who has been studying 60 autistic children over six years.

Early detection and intervention can make a lot of difference, as they did in the case of a 9-year-old autistic girl who ran around naked. "Within a month of intervention she became socially acceptable and now goes to a regular school," says Dr Vibha Krishnamurthy, a paediatric specialist in developmental and behavioural disorders at Jaslok Hospital, Mumbai. Vibha visits schools to sensitise teachers. "I know five schools in the city that have children with Asperger syndrome (a mild type of autism) and high functioning autism." The next step, she feels, should be a prevalence study. "We could look at other parameters... a challenge in India as most children have no records."

Immunisation, diet, television, breakup of the joint family and other environmental factors are being studied. "But nothing has been proved," says Vibha. "So we are looking at our population. Autism is showing up in all strata of society." There is a rising demand for services. Anything can help just as the hug machine developed by Dr Temple Grandin who herself is autistic.

Action for Autism: 011-26416469, 26416470. autism@vsnl.com The National Trust: 011-23217411. nationaltrust@ren02.nic.in www.nationaltrust.org.in

This programme helps kids DEALL with autism
Express News Service
February 18, 2003

Mumbai, February 18: INITIALLY, Kavita Singh did not find anything wrong with her son. He had begun walking at a normal age and had also learnt to mumble a few words.

‘‘But after some months, he stopped talking. He wouldn’t make eye-contact, avoid interacting with other children and throw tantrums frequently. That’s when we realised there was something missing,’’ Singh recollects. A visit to a paediatrician when the child was two years and five months old revealed he was autistic.

‘‘Though no epidemiological studies have been conducted in India, detection of cases of autism is on the rise — around one in 250 cases as against an earlier rate of one in 10,000,’’ says Bangalore-based Dr Pratibha Karanth, former professor of speech and language pathology at the All India Institute of Speech and Hearing, Mysore. ‘‘Earlier, only cases of severe autism would receive attention. Now, even mild forms are being noticed,’’ Dr Karanth adds.

Once her son was diagnosed as autistic, Singh’s life began revolving around his speech therapy sessions, sensory integration classes and play-school. ‘‘His condition is improving. But it involves a lot of running around. My family is supportive but it is taxing,’’ Singh says.

There may be a solution for parents like her. In 2000, Dr Karanth devised the Communication DEALL programme which aims at providing ‘‘integrated intervention’’ to autistic kids below five years. The programme is currently being implemented in Bangalore and Mangalore and will begin its Mumbai chapter in March.

DEALL or Developmental Eclectic Approach to Language Learning aims at providing training to pre-school children through a team of speech-language pathologists, therapists and pre-school teachers.

‘‘The programme offers the necessary therapy and training under a single roof. The objective is to try and get the child integrated into regular school,‘‘ Dr Karanth explains. The duration of the programme is one year. ‘‘If we think that the child needs some more time, we continue the programme for longer,’’ Nair says, adding that the current success rate of the programme is approximately 40 per cent.

Singh is considering the programme for her son who is now three.

‘‘It will save me the running around. Besides, three hours of rigorous training from qualified professionals is what attracted me to it,’’ she says.

Govind Krishnan (name changed) has a two-year-old daughter who is mildly autistic. He is keen on Communication DEALL though it isn’t convenient in terms of distance. ‘‘We currently take her to Vashi for therapy. But we aren’t looking at our convenience right now,’’ he reasons.

Autism-affected demand separate I-cards
The Hindu
February 14, 2003

NEW DELHI FEB. 14. The National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities has begun the process of lobbying with the Union Ministry of Health and Family Welfare for issuing separate I-cards for persons with autism.

``Autism is not recognised as a separate category of disability and though the number of cases of autism was on the rise, it still is being clubbed with mental retardation,'' says Aloka Guha, Chairperson, National Trust, adding that the Persons with Disability (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, too recognised only seven categories of disabilities and autism does not figure anywhere in the list.

On a conservative estimate, there are 20,000 persons living with autism in Delhi alone. However, since autism is not recognised as a separate category of disability, they remain hidden and invisible missing out on the social benefits accruing for other categories of disabled persons including a disability certificate where they are certified as autistic.

Even among the members of the medical fraternity, there is a considerable lack of awareness on what exactly constitutes autism. To clear their confusion and to help them come to grips with the disability, the National Trust held a one-day seminar on autism spectral disorders on February 13 by a Canada-based development paediatrician Mervyn Fox in association with the Union Ministry of Social Justice and Empowerment.

Mr. Fox has also authored a book on the subject of autism for the National Trust which was released on the occasion. "Family-centred care is the only long-term therapy for tackling autism spectral disorders,'' he said.

Agreeing that the profile of disabilities was changing considerably, Merry Baruah of Action for Autism and a parent of an autistic child herself lamented that "there was no separate diagnostic criteria for autism which was indeed unfortunate''. However, even cerebral palsy was till recently clubbed with mental retardation and it has now been recognised as a separate category of disability.

While efforts are also on to develop a separate course for special educators dealing with autism, it is a struggle for many parents to get a disability certificate stating that their child was autistic. "I had to struggle a great deal to get a disability certificate for my autistic child and when I managed to get one, he was certified as mentally retarded and not autistic,'' said one parent.

A Boy, a Mother and a Rare Map of Autism's World
The New York Times
November 19, 2002
By SANDRA BLAKESLEE

Tito Mukhopadhyay sits in a darkened laboratory, pointing at flashes of light on a computer screen. On his right is a neuroscientist, one of several who are testing Tito's ability to see, hear and feel touch. At his left, Tito's mother, Soma, watches quietly. Tito, who is 14, often stops the testing with bursts of activity. His body rocks rhythmically. He stands and spins. He makes loud smacking noises. His arms fly in the air as if yanked by a puppeteer. His fingers flutter.

Everyone waits.

Tito reaches for a yellow pad and writes to explain his behavior: "I am calming myself. My senses are so disconnected, I lose my body. So I flap. If I don't do this, I feel scattered and anxious." Tito has severe autism, a disorder that occurs when the brain mysteriously fails to develop normally in infancy and early childhood. Born and raised in India, Tito speaks English with a huge vocabulary. His articulation is poor, and he is often hard to understand. But he writes eloquently and independently, on pads or his laptop, about what it feels like to be locked inside an autistic body and mind.
"Tito is a window into autism such as the world has never seen," said Portia Iversen, a co-founder of Cure Autism Now, a Los Angeles research foundation that brought Tito and Soma to the United States in July 2001 and continues to support them. Autism experts are studying him, amazed to discover, for what they say is the first time, a severely autistic person who can explain his disorder. "Tito is for real," said Dr. Michael Merzenich, a neuroscientist at the University of California at San Francisco Medical School, who has run extensive tests on Tito. "He unhesitatingly responds to factual questions about books that he has read or about experiences that he has had in detail and in high fidelity."
"I've seen Tito sit in front of an audience of scientists and take questions from the floor," said Dr. Matthew Belmonte, a neuroscientist and an autism expert at Cambridge University. "He taps out intelligent, witty answers on a laptop with a voice synthesizer. No one is touching him. He communicates on his own."

Nor is Tito a savant, an autistic person with a single extraordinary talent like the mathematically gifted character in the movie "Rain Man." "Tito thinks and feels and has opinions like all the rest of us," said Dr. Samuel Smithyman, a psychologist in Los Angeles who is Tito's personal analyst. "He defies the assumptions we have about autism." Tito was assessed with well-validated diagnostic tests and meets all the criteria for autism, said Dr. Sarah Spence, a pediatric neurologist at the University of California at Los Angeles.

Like many autistic children, Tito appeared to develop normally. He learned to sit and walk like other babies. But by the time he was 18 months old, he was showing signs that he was not like other toddlers, especially in the way he distanced himself from social settings and did not talk.
After his severe autism was diagnosed at age 3, Soma decided to educate him anyway, using methods she would make up as she went along.
"I saw that Tito had very good memory with roads, position of objects in the room, and also he would make complex patterns with match sticks," said Soma, as she prefers to be called. "I just wanted to divert his interests toward communication and learning."

For 10 years, she and Tito lived in small apartments in Mysore and Bangalore, where she taught him, day and night. Although Tito wanted to hide in a corner and watch a ceiling fan, Soma took him for daily walks amid the colors, smells and sounds of local markets. Tito's father, who lived and worked in a distant city, visited occasionally. Soma first taught Tito to recognize letters and sounds on an alphabet board, choosing English over more difficult Indian dialects. Then she tied a pencil in his hand and showed him how to make each letter, often refusing to let him eat until he could do so. Around then, a method called facilitated communication, in which a parent or teacher holds the wrist of an autistic person as he or she taps messages on computer keys, had been widely discredited. Critics said teachers were prompting autistic people to respond through a kind of Ouija board effect.
"I was desperate to show people that Tito's poems came from him and not me," Soma said. "I put myself in other people's shoes and knew we needed genuine proof that he could write independently."

The mother also read Tito stories and books - Aesop's fables, Thomas Hardy novels and the complete works of Dickens and Shakespeare - and demanded that he write his own stories in return. Tito continues to write poetry and essays every day. His first book, "Beyond the Silence," was published two years ago in Britain by the National Autistic Society. "I need to write," he said recently, scrawling the words on a yellow pad. "It has become part of me. I am waiting to get famous." Since traveling to the United States, Tito has visited six laboratories for neurological testing. Because he cannot hold still long enough for brain imaging, he cannot offer researchers pictures of his mind in action. Instead, he gives them clues about his mental states in poems and essays that can then be explored in specially created tests.

"When I was 4 or 5 years old," he wrote while living in India, "I hardly realized that I had a body except when I was hungry or when I realized that I was standing under the shower and my body got wet. I needed constant movement, which made me get the feeling of my body. The movement can be of a rotating type or just flapping of my hands. Every movement is a proof that I exist. I exist because I can move." Tito seems to lack a sense of his own body, the kind of internal map, Dr. Merzenich said, that normal children develop in their first few years. The maps involve brain regions that specialize in the sense of touch and movement and are widely connected to other areas, and they are highly dynamic throughout life, changing in response to everyday experience. By imaging the brains of higher functioning autistic people who can stay still in scanners, researchers in the laboratory of Dr. Eric Courchesne at the University of California at San Diego found that autistic people had mixed-up brain maps. Although a normal person, for example, has a well-defined brain area that specializes in face recognition, some autistic people have face-recognition areas in parts of the brain like the frontal lobes, where no one had dreamed they could be laid down. The same is true of maps that help plan movements. This means body maps are formed in autistic children, but they may be scrambled differently in each person. In imaging experiments starting at the University of California at San Francisco, Dr. David McGonigle, a radiologist, is exploring the hypothesis that some autistic children may have scrambled body maps. Many cannot identify parts of their bodies in a mirror. Even if they know "nose," for example, when asked to point at the nose they may put a finger to an ear. They also tend to be clumsy. With eyes closed while standing, they wobble and stagger. Ms. Iversen, whose 10-year-old son, Dov, is severely autistic, notes that maps for face recognition form early. "I smile, you smile, and maps are formed," she said. But if you do not have a faithful mental map of your own face and body, she said, you cannot read the expression on someone else's face.

The inability to interact socially is a core problem in autism. People who lack normal body maps may not be able to build consistent mental models of the world, Dr. Belmonte said. They may not be able to integrate sights, sounds, smells, touches and tastes. This is what Tito is talking about when he writes that he cannot perceive the world with more than one sense at a time. "I can concentrate either at what I am seeing or what I am hearing or what I am smelling," he wrote, not long after he began meeting neurologists. "It felt nothing unnatural to me until I realized that others could simultaneously see and hear and smell." In Dr. Merzenich's lab, Tito has had extensive testing to explore his unusual perception. Sitting in a darkened room, he listens to beeps followed by flashes of light on a computer screen. Most people can sense the sound and the light, even when they are separated by only a fraction of a second. But unless the light follows the sound by a full three seconds - an eternity for most brains - Tito never sees it. "I need time to prepare my ears," he told Dr. Merzenich. "I need time to prepare my eyes. Otherwise the world is chaos."

Tito says that people with autism, at least those who are like him, choose one sensory channel. He chose hearing. Most of the time, Tito attends to the sounds of language and to oral information, which may help explain his gift for poetry. Vision, Tito said, is painful. He scans the world with his peripheral vision and rarely looks directly at anything. Other autistic people like Dr. Temple Grandin, a professor at Colorado State who earned a doctorate in animal science, specializes in vision. "When I talk about anything new, I have to look at the picture in my mind, and then language narrates it like a slide show." Dr. Grandin said when she met Tito in Dr. Merzenich's lab, where they were tested side by side in September. For Tito, willing his body to do things is a particular problem, Soma said. "If he's sitting on the couch and I ask him to go to the kitchen, he cannot do it," she added. "But if he hears me open a bag of cookies, he moves like a gazelle on pure impulse." That is another sign that Tito's brain is disconnected, Dr. Merzenich said. Children gradually develop higher circuits to control their impulses as the frontal lobes mature and connect to circuits that developed earlier. Each stage rests on earlier circuitry; if that is abnormal, later-to-develop regions may never be organized correctly.

Still, Tito's behavior and writings dispel a popular notion that autistic children do not feel empathy, Ms. Iversen said. Tito has feelings and notices emotions, she said, but he can be stoic about his disorder. When a mother at a large autism meeting asked Tito for his advice to parents, Tito replied simply, "Believe in your children." Most experts say they believe that abnormalities in several genes contribute to developing autism, along with environmental factors that have yet to be fully identified. Many parents say the first symptoms, like the lack of eye contact, as in Tito's case, do not appear for about 18 months. This accident of timing has led some to associate vaccines given at that age with the onset of autism. But it is equally plausible, many experts say, that the symptoms appear at that time because that is when the brain naturally reaches new levels of complexity. If primary sensory regions like the auditory cortex have prenatal defects, entire pathways of subsequent brain organization would not form properly.
Researchers have measured swarms of electrical discharges in the primary hearing regions of autistic children while they sleep. Such epilepsy-like activity may affect the way the brain organizes its circuitry in childhood.

Others note that the brains of autistic children are larger than average and that the brain's basic building blocks, called cortical columns, contain many more cells than normal and make excess connections to other cells. Such hyperconnectivity may cause autistic children to become overwhelmed by details because their minds are never free to integrate the whole picture. Moreover, their brains are wired in such a way that they are prone to associate things that do not normally go together. Tito says that at 4, he was looking at a cloud when he heard someone talking about bananas. It took him years to realize that bananas and clouds were different. As researchers continue to study Tito, Soma works with a small number of children in Los Angeles to see whether her teaching methods can help others. Unlike many educators who try to slow things for autistic children, Soma demands rapid responses, which she says prevent the child's brain from being distracted.

It is too soon to tell whether she will succeed. But parents like Ms. Iversen have been impressed. When her son first used the spelling board, Dov broke his muteness, asking for a navy blue blazer and algebra lessons. When she asked him what he had been doing all those years when he couldn't communicate, he pointed out letters to spell "listening."

New Delhi Center Has Ripple Effect
The New York Times
November 18, 2002
By JOHN O'NEIL

The school that Merry Barua runs in New Delhi is the largest autism service center in southern Asia. Last year, she persuaded the Indian government to recognize the existence of autism for the first time — though it has not financed any treatment. A former prime minister, Sonia Gandhi, attended a fund-raiser concert that Ms. Barua's group, Action for Autism, held this month. Yet when Ms. Barua started her efforts, she was simply a mother facing "a very desperate life at home," she said, trying to cope with her autistic son's increasingly difficult behavior. She scraped together the money for a two-week course at an autism center in America. "Because my life got easier, I was able to help others," she said. In 1994, with two other mothers, she started the Open Door, India's first autism school, with a single teacher and two students. Then she started a newsletter, "and the organization took off," she said, as the newsletter and later a Web site, www.autism-india.org, fed the thirst for information from the many parents who in the mid-1990's were hearing about autism for the first time. The center's school is larger now, with about 50 students, but the emphasis is still on training parents and sharing knowledge. "The basic idea behind all our programs is to try to have a ripple effect," Ms. Barua said. A particular emphasis is on parent training, in the hope that not only are parents able to provide instruction at home but also able to pass that knowledge along. All told, Ms. Barua estimated that several thousand children had been affected by such outreach efforts. The Open Door has also spawned a half-dozen similarly parent-run schools in other Indian cities. She said that Action for Autism receives some support from the Danish Autism Society and occasional checks from Indians overseas. Teachers and consultants from other countries come regularly to speak and conduct training sessions. But for the most part, Ms. Barua said, her group relies on raising money locally. "We have very low costs," she said with a laugh, adding that staff members work for "totally stupid amounts." Items on her wish list include: whiteboards and felt pens, $50; a portable music system, $500; two trampolines, $80 each; new books on autism, $1,000. Her big goal is to raise $1 million to build a center on property in New Delhi that the government donated last month. Ms. Barua is working on a sponsor-a-brick program "so people don't feel threatened by a humongous sum."

When a disabled child needs a guardian
Times of India
By GEETHA RAO (Bangalore)
OCTOBER 25, 2002

There is one question that preys on the minds of parents whose children suffer from autism, cerebral palsy, mental retardation and multiple disabilities: who will look after their children when they die? Is there a case for guardianship? Pradeep Kumar, Assistant Commissioner, Office for the Welfare of the Disabled, reassures them that the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act 1999 and Rules 2000 will give them the answers. Who can look after mentally disabled children once their parents die? That's some thing that worries parents of such children. But with the National Trust for Welfare of Persons with autism, cerebral palsy, mental retardation and multiple disabilities Act 1999 and rules 2000, they can be assured that their children can be given guardianship, and that these guardians will look after them after their parents' death. Unfortunately, not many are aware that they can apply for guardianship and safeguard their children's future. Not just parents, sometimes even government officers do not know this.

What is the role of guardians? The person appointed as guardian shall take care of the person with disability and his property, or be responsible for the maintenance of such a person. The guardian should, within a period of six months from the date of appointment, furnish an inventory of immovable property belonging to the person with disability. He must also furnish details of the movable property received on the person's behalf. Also, within a period of three months at the close of every financial year, he should have an account of the property and assets in his charge.

How can a person apply for guardianship? A parent of a person with disability or his relative can apply for guardianship to the local level committee, appointing any person of his choice to act as guardian. Any registered organisation can also make an application in the prescribed form to the local level committee for appointment to guardianship. For this, they must use Form A. Form A is available at the district deputy commissioner's office and the assistant director, office of women and children development in all districts.

Who can become a guardian? Natural parents, a relative, a registered organisation or any one who wishes to become a guardian can become a guardian. Till such a person is 18, parents are allowed to take decisions for them. But after that, they become guardians.

Does guardianship mean that the disabled person has to live with the guardian? Not necessarily.

Who monitors the guardianship? The local level committee headed by the district magistrate monitors the guardianship.

Can there be more than one guardian? Yes, There is separate guardianship available. There can be one guardian for care, and another for property. The local level committee looks into both kinds of guardianship.

Can a guardian be removed? Yes, a guardian can be removed if the parent, relative or registered organisation finds the guardian abusing or neglecting the ward. This includes solitary confinement, sexual abuse, physical abuse or chaining. A guardian can also be removed if he is found misappropriating or neglecting the ward's property. If the committee is satisfied that there is ground for removal, the guardian can be removed and a new guardian be appointed in his place. For further information, contact Pradeep Kumar on 548 2641 or the Karnataka Parents Association for the Mentally Retarded Citizens on 656 4608.

Hope for autistic children
The Hindu
September 30, 2002
By Alladi Jayasri

Every week, at Prathibha Karanth's consulting rooms, at least two sets of frantic parents bring their toddlers, plying her with questions, scared and mystified, as to why the children are violent, unresponsive, anti-social, incapable of feeling emotions, and unable to take care of themselves. Or in less alarming degrees, not displaying the normal social skills or responses appropriate to their age.

Autism and related pervasive developmental disorders (PDD) affects at least 15 in every 10,000 people, and research is advanced just enough to link them to biological or neurological disorders.

The search has been on to find a cure since autism and PDD first became known, and to help the affected people enter the mainstream.

The past couple of decades have seen if nothing else, a coming together of parents and families of autistic children to make common cause, share the problems, and work towards a solution.

But the eminent speech-language pathologist, Prathibha Karanth, is impatient, with answers that elude research and experiment. Dr. Karanth, who trained at NIMHANS and worked at the Mysore-based All-India Institute of Speech and Hearing, pioneered the Communication DEALL (Developmental Eclectic Approach to Language Learning).

And less than two years since it was initiated, DEALL has proved to be the light at the end of the tunnel for more than 50 children.

Five children on the DEALL programme are already in regular schools, and for Dr. Karanth, they are the vindication of her conviction that earlier the intervention, easier the integration of the child into the mainstream.

Parents of one child have relocated from the Middle East so that it can overcome the debilitating disorder, and another mother brings her three-year-old from Peenya, although there is another baby for her to look after.

Another child, who finished therapy with Dr. Karanth, is happily attending regular school, and his mother is volunteering her time, and sharing her experience to encourage parents who continue to be devastated on discovering their child's condition.

Communication DEALL, says Dr. Karanth, a winner of the Young Scientists' Award early in her career, was a response to the virtual absence of intensive early intervention for alleviation of these disorders. DEALL aims to provide intensive stimulation and training to small groups of pre-school children with developmental disorders, in the areas of communication, cognition, behaviour, and socialisation, enabling their integration into the normal school set-up.

Parents are wary of being candid about their child's disorder history, as they fear, with justification, that it may mean a prejudice against the child. "I tell them to call only if some problem develops, and there are indications of a regression, although it is remote,'' she says.

There is nothing that sensitivity and understanding cannot handle, but school managements and other parents are often short on those, when it comes to autism, as any parent of an autistic child knows.

This has only made Dr. Karanth all the more determined to show that autism is conquerable. She has put 15 toddlers on DEALL in a new Montessori school, Creative Foundation, in Fraser town.

The school's Neelam Calla, who had no qualms about "mixing these extraordinarily gifted children with others'', however, sent off letters to all parents, and was touched to find that nearly every one of them welcomed the idea.

For Dr. Karanth, this means autism or PDD can be "erased'' and the child integrated without the trauma or ignominy associated with the disorder.

Their need is special
The Hindu
August 6, 2002
By PRASSANA SRINIVASAN

Children with autism, a developmental disorder, require special attention. And catering for their needs are several organisations in the city.

ROHAN IS just four-years-old; he can read long sentences with ease. But, ask him to recite the alphabet and he stammers. Rohan is one among many children who suffer from the developmental disorder, autism.

Autism is defined as a life-long developmental disorder primarily affecting communication and social skills, thought and behaviour. It was in 1943 that Leo Kanner, a child psychiatrist of the John Hopkins Medical School, gave the disorder the term `autism'.

Studies reveal that signs of autism are evident before the age of three, and boys are four times more affected than girls.

Although, it occurs as early as 18 months in a child, the symptoms surface as the child develops. Statistics estimate that five to 15 of every 10,000 children are diagnosed with autism. The child fails to develop language skills appropriate for its age and is unresponsive to parents or any other stimuli. "My son did not respond to me or anyone else at home even when he was two. In the beginning, we thought he was hearing impaired, but we discovered that he responded to the sounds from TV or radio. So we took him to an ENT specialist who found that his hearing was normal. He suggested that we go to a child psychiatrist and that's how we learnt he was autistic," says Gayathri. Awareness of autism is considerably less even among educated parents and not many children are given the right treatment. Like Vidya's son, who was wrongly diagnosed as being mentally challenged and put in a special school. "I found that there was no progress in his behaviour. On the contrary, he was getting worse as the days went by. We consulted a child psychiatrist who suggested that we remove him from school immediately. For a long time, he was under individual supervision, after which we put him in a special needs school," she says.

"Although 50 per cent of autistic children are bound to be mentally challenged, one must understand that autism is not a mental illness. One can call it a spectrum disorder, in the sense that each child has a unique problem. One child might be extremely sensitive to sound, while the other may be sensitive to smell. So the child's need has to be assessed and addressed, and a structured pattern of development activity provided," says Sulata Ajit of Sankalp (ph: 6182588).

Subhashini, Lakshmi and Sulata, with other in-house occupational and speech therapists, cater for the needs of over 30 autistic children in their school, which was started in 1999. "It is also wrongly understood that those who are autistic have a conscious desire to withdraw from social interactions but again, one must understand that their withdrawal is not a conscious desire but a result of the neurological disorder," says Sulata.

"It is very important that the child is not nagged all the time. Rather than asking him not to do a certain action, if the child is given the choice to do what he/she wants, it will help improve behaviour. Here, we do not follow any prescribed curriculum, but we do follow a structured learning programme. After thorough observation and informal evaluation, we start teaching the children. We also have in-house occupational and speech therapists who give the required treatment," says Sulata, a special educator herself.

Autistic children do not look different but what sets them apart is their apparent inability to relate to the environment. There is also a wide variance in their intellectual ability. Some can be hyperactive while some tend to be slow learners. Many autistic children are visual learners and are less confused if the information is presented visually. "Hyperactive children are said to have Asperger's syndrome, a variant of autism. They are highly able people who are autistic. Unlike other autistic children, they are more independent and able to help themselves. They may have excellent rote memory but have problems in socialising," points out Sulata.

"Some parents are happy to put their child in a regular school without realising the consequences. But the problem will arise when the child goes to the higher classes," says Hira, a parent, who attended the recent workshop on autism conducted by We Can (Ph: 4473136), a Chennai-based organisation, working with autistic children.

"It took a long time for us to come to terms with the fact that our child was autistic. After that, we have spared no effort in caring for the toddler. But social acceptance is still a dream for these children. People are ready to accept a badly behaved normal child but are not anywhere close to accepting these special children," says Radhika a desperate parent.

"Early diagnosis and educational evaluation is very crucial in managing the problem. Help and guided supervision can work wonders and the person can lead a more independent life that is close to normal," says Hema Jayaram of We Can.

It is a positive sign that various groups in Chennai are creating awareness about autism. It still requires the help of parents, psychiatrists, paediatrics, school authorities and the public to give such special children understanding and the space to develop as individuals.

The Signs...

SINCE AUTISM is considered a spectrum disorder, there are many terms to describe children with autism, such as autistic like, high functioning or low functioning, less-abled or more-abled and so on. However, there are certain characteristics typical of children with autism. Here are a few:

-- Avoiding eye contact, lack of interaction with other children and inability to communicate by word or gesture.

-- Inability to accept affection, and problems relating to people, objects and events (the child may resist cuddling or scream when picked up).

-- Violent behaviour towards others, throwing tantrums for no apparent reason.

-- Repetition of others' words and something heard earlier (echolalia).

-- Hyper or hyposensitivity to sensory stimuli such as touch, hearing and smell. (For instance, some children may dislike being touched, some might be hypersensitive to sound, others have an affinity for bright colours).

-- Need for sameness and insistence that the environment remains unchanged.

- Unusual mannerisms such as grimaces, hand flapping, rocking, jumping and often treating others as inanimate objects.

-- Paying attention to minor or insignificant details of an object or a situation and then putting these details together to form a bigger picture.

-- Use of meaningless language and difficulty in understanding abstract language.

-- Difficulty in understanding concepts and limited imagination.

(Some of the names have been changed.)

PRASSANA SRINIVASAN

Lack of infrastructure affects the autistic
Express India
June 13, 2002
Sushmita Choudhury & Gouri Shah

Mumbai, June 13: Try calling any of the major hospitals about autism and and chances are they will ask, ‘‘What children?’’ Probe deeper, and more often than not you will be directed to the Children’s Orthopaedic Hospital, Haji Ali, supposedly the only centre in Mumbai for autistic children.

However, this hospital only deals with children afflicted with cerebral palsy. As Dr G S Ranavat points out, ‘‘We don’t treat autism here as it does not fall under the hospital situation. This is the reason no medical institution really looks into it.’’

Autism is an information-processing disorder also known as Pervasive Development Disorder. It is primarily a brain disorder which causes people to have difficulty following the same rules of communication and socialisation that come naturally to others.

Though causes are yet to be identified, research suggests that there is no single cause. It could be partially genetic and in some cases, there is speculation on the link between toxins and pollutants in the environment.

Lack of awareness about the disease often leads to delayed diagnosis, which hampers the possible progress of the child. Lack of research and awareness of the disorder manifests itself in the dearth of infrastructure. There are only a handful of institutions capable of meeting the requirements of an autistic child.

Reflects Dr Brajesh Udani of Hinduja Hospital, one of the more well-known doctors working in this field: ‘‘Awareness has only increased in the last 10-12 years. The percolation of information from the medical community to lay persons to the government is bound will take long.’’

But often the main problem is that hospitals don’t seem to have any specialised infrastructure for autism. Says Dr Santosh Kumar Shetty of Breach Candy Hospital, ‘‘What we need is a dedicated centre providing vocational therapy, speech therapy and other facilities. But sadly, the priorities of most hospitals lie in areas that generate revenue such as orthopedics, cardiology, etc. ’’

However, the situation is not as dismal as it appears. Social organisations are coming together to offer help and support to parents of autistic children. One such organisation is Forum for Autism, which in collaboration with Parents Forum for Appropriate Education of the Child (PACE), organises workshops to spread awareness and guide parents in dealing with their autistic child.

The Sairam Autism Centre at Sewri, started in 1998, offers facilities for autistic children which include a special school, a vocational centre and a national open school, where these children can give their Std 10 exams. It offers special care, treatment and training along with assessment facilities and the required therapists. The centre is among the few in Mumbai offering Caryotype Testing, which tests the possible presence of the fragile X chromosome that is linked to autism.

Similar schools such as Ashiana Institute for Autism in Andheri, set up in 1999, offers ‘‘a great teacher-student ratio, keeping in mind the one-on-one ratio required by autistic children,’’ says a trustee. There are also two schools run by PACE, which cater to the lower income groups.

For more information contact PACE at 6414171 and 2041908.

‘It’s devastating, but we accept reality’
Times of India (Mumbai)
SHARMISTHA CHATTERJEE
JUNE 09, 2002

When Ravi and Chitra Iyer’s son, Shravan, was born, they basked in the glory of parenthood. But their happiness was shortlived. Shravan was soon diagnosed with secondary autistic features. “It was devastating, but we accepted reality,” says Chitra, the pain and stress written on her face.
It’s tough parenting an autistic child, considering it’s a neurological disorder that affects thought, perception and attention. It has a 0.2 per cent occurrence rate and zero social acceptance. “Autism is not only less understood, it’s also difficult to explain,” says Dr Vibha Krishnamurthy, a specialist in developmental disorders. “Due to lack of awareness, people tend to say, ‘Arre, yeh paagal hai.’ ”
Sometimes, accepting reality is difficult for parents. It took Babita Raje 5 years to convince her scientist husband that their son was autistic. “Only after my son climbed onto a window ledge did my husband realise that something was seriously wrong,” she says. So acute is the problem that marital discord and breakups are common among couples with autistic children. However, not all give in. Like Merry Barua. “When I learnt about my son’s condition,” she says, “I was shattered.” Not one to take things lying down, she gave him the best treatment and then plunged into creating awareness about autism.
Evanna Joseph lived for 8 years thinking that her daughter, Michelle, was simply taking time to develop normally. “Only 6 months ago, I learned that she’s autistic. It was difficult,” she says. Though new treatments are cause for optimism, parents continue to cope with trying situations. As Chitra hopes fervently, “One day, my son will be able to take care of himself...”

Tackling autism
Times of India (Pune)
RAHUL CHANDAWARKAR
MARCH 02, 2002

There is hope for the city’s Autistics. The Pune Support Group for Autistics (PSGA) and the Indian Academy of Paediatricians (IAP), Pune chapter, have decided to meet every third Sunday of each month to discuss ways and means to handle the disorder better. This was disclosed at the start of a three-day workshop on Autism organised by the PSGA, which got under way at the Bal Kalyan Sanstha on Ganeshkhind road on Friday morning. Speaking to Pune Times, Dr Vasant Dhamal, president of IAP agreed that many paediatricians and general physicians knew very little about the disorder and that there was a need to interact with parents to understand the disorder better. "Our monthly meetings are a step in the right direction," Dr Dhamal said. How crucial this doctor-parent interaction will be was evident when Dr Charudatta Apte, ace neurosurgeon and chief guest at the function, openly acknowledged the fact that even he did not know anything about Autism until he was invited for the function. Autism is a lifelong neurological disability, affecting the social and communicative skills of a person. Children with autism often have problems processing information from their five senses, which with their inhibited imagination, imitation and empathising abilities, leads to problems in learning appropriate social behaviour. The three-day workshop is being conducted by noted Delhibased activist Merry Barua, head of Action for Autism, a non-governmental organisation. It is being attended by parents of Autistic children, therapists and doctors. Barua stressed the need for paediatricians and general physicians to diagnose the disorder quickly, so that appropriate therapy could be resorted to. Sunday, March 3, will see the IAP and the PSGA hold an exclusive meeting with Barua at the Poonam hotel at 9 am to discuss the role of doctors in treating this disorder. The PSGA meets every third Sunday at 6.30 pm at the Holistic Diagnostic Centre, Eden Hall, Model Colony.
rahulchandawarkar@indiatimes.com.

Parents unaware of disability in children
The Hindu
December 17, 2001
By Our Staff Reporter .

There was a need to break the barriers of poor communication and misinformation that exists in the disability sector, Ms. Aloka Guha, Chairperson of the National Trust for Welfare with Autism, Cerebral Palsy, Mental Retardation, and Multiple Disabilities, said here on Friday.

Speaking at a function organised to mark the first anniversary of the ``Communication-DEALL'' project, an early intervention programme for children with developmental language disorders initiated by Dr. Pratibha Karanth, and organised by the India Autism Forum, Dr. Guha said most parents were not informed about the condition of the child early and they were not aware where to go for help in rehabilitating their children who might have disabilities.

The National Trust was formed with the sole aim of enabling and empowering persons with these four disabilities. The focus would be on giving them care and protection within their family and community and not through institutions. She called the efforts of Dr. Pratibha Karanth in helping autistic children as ``need-based and a unique approach'' and said it should be replicated in other places.

The trust had brought out 17 publications in 13 languages to help parents of disabled children. The copies of these booklets could be obtained from the Office of the Commissioner of Disabilities and the Social Welfare Department.
A second project was underway and she and her team were planning programmes for early intervention for autistic children, she added.

NGO wants land for national autism centre
Indian Express
December 16, 2001

ACTION for Autism (AFA), an NGO working with autistic children, organsied a Walk for Autism at the India Gate lawns today.More than 150 autistic children, their parents and volunteers joined the walk which was flagged off by film actress Nandita Das. The walkers were scheduled to meet the President but the appointment was cancelled for security reasons. The walk was held as part of the India Autism Week, a week-long campaign cross the country which began on December 14.Autism, a life-long neurological disability affecting the social and communicative skills of a person, affects one in every 500 people but its exact cause is not known. Genetics, foetal development snags, metabolic processes are thought to play a part in causing damage to the brain leading to autism.A national medical conference was organised as part part of the Week at which doctors and experts from London, Mumbai and Bangalore answered a range of questions on autism. Groups and organisations working with autistic children all over the country have cooperated with the AFA to organise the Week. It is for the first time that a week-long campaign is being held on autism.''Other than spreading awareness, AFA is also focusing on our fight for land to build a National Centre for Autism. The centre will train teachers and parents and have diagnostic and rehabilitation services, '' Merry Barua, AFA's director, said. The AFA will give a memorandum to the President for allocating land.The lack of trained professionals results in many autistic children not getting timely and accurate diagnosis and consequently not getting appropriate intervention. ''This has often resulted in sending such kids to schools of mentally retarded. But autistic children should be given different and separate caring,'' said Ashwini Chaswal, one of the trustees of AFA.As part of the Week, a four-day exhibition of paintings by autistic people will begin at the India Habitat Centre from December 19. The last event of the campaign, on December 23, is a day-long talk for parents and professionals by Dr. Zenobia Sharma, a London-based expert.

© 2001: Indian Express Newspapers (Bombay) Ltd. All rights reserved throughout the world.

Living with autism
Deccan Herald
December 16, 2001

The autism awareness week is currently being observed in the country. BHARATHI PRABHU reports on some efforts to understand the condition and improve the lives of affected children.

Boys are four times more likely to develop it than girls. Roughly one in five hundred children is affected by it making it even more common than Down's syndrome. In India alone there are estimated to be over a million children and adults with the disorder. Those afflicted by it display a wide range of abilities and disabilities making it difficult to state what is typical. If Dustin Hoffman's character in the movie Rainman is one portrayal of the condition, there are those who need help even with self care.We are talking about autism, a life long condition found in every race, geographical location and ethnic group. Autism awareness week which began on December 13 will be observed till the 23rd in India. India Autism Forum and other NGOs working in the field have come together to hold a series of programs to raise awareness. Autism was put on the country's agenda by the formation of a National Trust in 1999. Now there are professionals and organisations offering services to children with autism and their parents in major Indian cities. Some of them also have outreach programmes. Welcome developments considering the rising incidence of the disorder.Autism is part of a spectrum of pervasive developmental disorders. In autism certain developmental milestones may be delayed while others may be age appropriate or even superior! It is this unevenness which makes the disorder so perplexing. Some children with autism have other associated disorders like mental retardation and seizures. There are both high and low functioning persons with autism. The cause is not known but there is an underlying neurological involvement. Genetic factors are also being considered although no particular gene has been implicated. A multi-disciplinary team of neurologists, paediatricians, psychologist and speech-language pathologists best makes the diagnosis. Medical tests may be necessary to rule out or confirm the presence of other similar and associated disorders. There is no 'cure' and a child with autism will grow up to be an adult with Autism.

Autism is sometimes left undiagnosed for the fear of labeling a child! But an accurate diagnosis helps in dealing better with the problem. Different approaches, medical, dietary, alternative medicine have been tried in treating autism with varying results. Training procedures differ in contents and methods depending on the organisations and professionals providing them. The consensus now is that early, intensive and structured intervention which is based on an individual's profile works best. Parents play a crucial part in the intervention process. Support groups help in creating awareness, lobbying for the children's rights and bringing together different professionals and sometimes even in conducting training programmes.

Special educators, speech language pathologists and psychologists working in tandem can profile the child's strengths and plan appropriate intervention strategies. Although communication is one of the key areas affected, only now has the focus of treatment shifted there.

Dr Prathibha Karanth, a speech language pathologist has developed 'Communication-DEALL' an early intervention program for children with autism, which focuses mainly on communication. She was partly helped in her endeavour by Tito, a gifted boy with autism and unusual language skills, who gave her a rare insight into the workings of his mind.

The programme continues to help many other children with autism. Those working with the children feel that each child offers a different challenge calling for immense patience and creativity. When one rises to the challenge a lot can be achieved. There are lots of instances where children with autism have done very well for themselves.

Integration and independent living are attainable goals to at least some persons with autism and in every child there is scope for improvement. Tito has published a book and has a web site. No mean achievement for any 14-year-old with or without autism.

Understanding autism
Hindustan Times
October 17, 2001
HT Correspondent

Autism, often dismissed as a type of mental retardation, is one of the most misunderstood conditions today. It is a neurological disorder that affects a person's social and communication abilities. Action For Autism (AFA), the only one of its kind in South Asia, provides vital services for the growing number of children diagnosed with autism. It runs Open Door, a unique school in Delhi.

This week, the organisation put its best foot forward to reach people throughout the sub-continent, organising a workshop for training families in dealing with autistic children. Providing specialised programmes for them is of utmost importance.

The latest figures suggest that 1 in 500 people are affected by autism. At last count, there were two million autistic children in India. The number of correct diagnoses is on the increase, but too many children are still misdiagnosed as being mentally retarded and fail to receive remedial measures, appropriate for autism, on time. Lack of awareness about the condition, often leads parents to send their autistic children to school for mentally handicapped children and this does not help.

Lifelong nightmare
Hindustan Times
Khushwant Singh
October 6, 2001

I was sitting on my favourite stone slab beneath the beautiful dome of the Bara Gumbad mosque in Lodhi Garden. Being a Sunday, the park was full of picnickers. Facing me on a rectangular green lawn were about two dozen boys and girls playing with their parents. It was a happy scene concealing a tragedy I was not aware of. Someone in the group recognised me. They clustered round me. "We are from Action for Autism," said a young lady. "We have brought our children for an outing."
I had heard of the word autism but was not sure what it exactly meant. It was some sort of deficiency different from mental retardation or Mongolism. The lady thrust some printed matter in my hand. Back home, I consulted the Oxford Dictionary. It was not there in the 1947 edition. It was in a later edition of Colliers Encyclopaedia. Then I realised I knew of several cases of autism. The first was my friend Surjit Kaur's grandson, Angad. Surjit, her daughter Ranjoo, her husband and their children live in Washington DC. They detected there was something wrong with Angad when he was two years old. He had grown into a handsome little boy but was speechless and timid. There are institutions in America treating autism, but none in India. It needs person-to-person care. Ranjoo has decided to devote her life to her son.

The next case is of Radhika, daughter of my friend's daughter Pugga and her husband Ramesh. They discovered their child's deficiency when she was in kindergarten. Radhika showed a talent for painting. A principal of a well-known public school took her on as an assistant to the art teacher. She is able to earn her livelihood but still needs parental attention at home. She has Down's Syndrome. Then there are cases of mental retardation of different degrees - ranging from the near-normal to extreme mental incapability. They are catered for in special schools like Delhi's Tamanna, run by Shyama Chona, principal of Delhi Public School, R.K. Puram. I visited the school a couple of years ago. The atmosphere was happy and cheerful with children doing their own things. Despite this, it was clear that none of them would ever be able to fend for themselves.

A typical example of autism is the son of Merry Barua, who runs Action for Autism from a one-room office in Chiragh Gaon. She came to see me with her son. The boy speaks English and Bengali. He sat beside his mother swaying like children in madrasas reciting the Quran. He suddenly put his hands on the carpet and went on repeating "I worship carpets" till his mother put her gentle hand on his shoulder to make him stop.It is estimated that India has two million autistic children, 80 per cent of them males. The only institution in India to counsel parents of such children is Action for Autism. So far our Government has not given a single paisa nor granted it a square inch of land to set up a permanent institute. It functions on a shoestring budget on a donation given by an NGO and contributions by parents of the afflicted. Much can be done in the way of individual counselling and by organising seminars for victims of autism.

What must give sleepless nights to parents of such children is: Who will look after our children after we are gone? It must be a life-long nightmare. Can't we do something to bring some cheer in their lives?

Govt yet to recognise autism despite rising cases
IndiaInfo.com
June 20, 2001
By Frederick Noronha

Panaji: Young men who can't tie their shoelaces. Children who don't get along with their playmates. Individuals blind to other people's mental state.

As more of such cases come to light, India is slowly realising the magnitude of the problem on its hands. Estimates say two million Indians suffer from autism, a condition that has long been neglected or gone unrecognised.

Autism is a disorder of the brain that causes a lifelong developmental disability. It primarily affects a person's communication and social abilities. Roughly 20 in every 10,000 people will be autistic or have autistic symptoms. Four out of five autistic children are boys.Children with autism often show poor language skills, a lack of ability to mix with others and odd or repetitive behaviour. Take the case of Nitin, aged three. From birth he was a cute baby who never cried much, his bright eyes and high energy levels reassured his parents.Over time, his parents noticed that even when called, he would not look at them. He approached others only if he wanted something. Rarely looking at people directly, Nitin was content to play by himself most of the day.Others like Rahul, 10, are very bright children. Rahul is exceptionally good at science and mathematics, and loves cars. He can explain engine specifications and year of manufacture of a range of cars. But his classmates find him rude and he doesn't take part in sports.Early diagnosis is important as it helps the family to seek the required services and professional support.In Goa itself, citizens widely believe that "autism is not a problem," says Goa- based developmental and behavioural pediatrician Dr Nandita De Souza. But at Souza's Sangath Centre for Child Development, of 1,046 that came in for assessment, as many as 52 (around five per cent) were diagnosed with autism.Only in 1998, the government of India recognised autism as a disability. Today groups like the New Delhi-based Action for Autism, a network of parents and professionals working for autism, are running campaigns to draw attention to this problem.Till date, however, autism is not included in the People with Disabilities (PWD) Act of 1995. Other disabilities like mental retardation, cerebral palsy, visual and hearing handicaps are recognised. This means that people with autism can draw benefits under this Law today only if their families take the cruel step of declaring them mentally retarded.

Under-reporting of adverse vaccine reactions could jeopardise infants' safety
The Times of India News Service
By Rupa Chinai
November 15, 1999

MUMBAI: Seema, a Mumbai housewife, says her baby was a ``bubbly, smiling, healthy and responsive child''-- that was until the child was given her first shot of the DPT (diptheria, pertussis and tetanus) vaccine at three months. It was after that the baby started to ``rock herself''. The doctors Seema consulted assured her that this was `normal'. When the baby was 15 months, she was administered the MMR (measles, mumps and rubella) vaccine.

``Thereafter, my child completely withdrew. Her babble disappeared, she would not come to us, she would only look at my feet. I strongly suspect that it was because of a defective vaccine that my baby developed features of autism (a neurological disorder).'' There are many Indian parents like Seema whose story has not come to public attention because of the social stigma attached to autism. In Mumbai, the health authorities have not heard of such vaccine-damaged children. This is because doctors who administer the vaccine usually do not report cases of adverse vaccine reactions to the municipal authorities.

In the developed countries, where there is greater public awareness, vociferous questioning has forced governments to look this issue squarely in the face. When some infants in the UK and Japan died after being administered the whole cell pertussis vaccine (the `P' component in the DPT vaccine), a massive public outcry prompted the governments concerned to suspend use of that vaccine.
Harvard University's Dean of Public Health, Barry Bloom, states in a recent interview that while the whole cell pertussis vaccine has worked well, it does have some side-effects, with one in 30,000 children becoming neurologically damaged.

Suspension of the vaccine in the UK, however, led to an increase in the incidence of whooping cough, says Mr Bloom. This triggered research leading to the development of the acellular pertussis vaccine, which Mr Bloom says is more expensive and less toxic.

The acellular vaccine has been licensed for use in Japan since 1981 and in the U.S. since 1996 for children two months and older, confirms Stanley Plotkin, a leading vaccine scientist, who recently visited Mumbai. India, however, continues to use the whole cell pertussis vaccine in its national child immunisation programme.

Cases of healthy babies being damaged by the whole cell pertussis vaccine in the West have been documented by H. Coulter, a medical historian, and B. Fisher, vice president of `Dissatisfied Parents Together', in their book, `A shot in the dark'. The adverse reactions include convulsions, shock, abnormal screaming episodes and `sudden infant death syndrome' (stoppage of breathing). The long-term complications include learning disabilities and hyper-activism, among other forms of brain damage. Such incidents are under-reported by doctors, for fear of malpractice suits, the authors of the study say.
Babies who suffer progressive neurological disease should not be administered the pertussis vaccine, say manufacturers of the vaccine here. But is that condition apparent to parents when the first dose of DPT is mandatorily given at six weeks of age in India?

A spokesperson of The Indian Academy of Pediatrics says, ``The whole cell vaccine does give more local reactions. Unless a control trial is done, it is difficult to talk about the long-term reactions. We have always taken the stand that the acellular vaccine is better than the whole cell, because of the complications that occur after vaccination. But it is not available in our country. We have not, however, advocated use of the acellular vaccine to the government.''

A vaccine against rubella or german measles is now being advocated for inclusion in the child immunisation programme, to befollowed by a booster shot for adolescent girls. While Indian data on rubella incidence is inadequate, extrapolations based on worldwide data have resulted in the claim that the estimated prevalence in India is 100-200 per 100,000 population.
A harmless childhood disease, rubella produces mild symptoms that can pass unnoticed. Children who contract the infection are likely to acquire lifelong immunity. Rubella is, however, dangerous for women in the first six weeks of pregnancy, causing congenital malformations, deafness and mental retardation in babies. If rubella occurs after the first trimester of pregnancy, theincidence of foetus abnormality is low, says Mr Plotkin, who developed the rubella vaccine.

U.S. studies show that 36 per cent of the young women vaccinated against rubella in infancy lose their immunity by the time they are adolescents (Neil Miller,`Vaccines and natural health', Mothering, Spring, 1994). Those who have never acquired natural immunity because of the vaccinations in childhood, run the risk of contracting rubella while pregnant.

Mr Plotkin says it is ``easier to vaccinate babies rather than adults''. Routine vaccinations of infants would reduce the circulation of rubella in the population, he adds. But for that to happen, governments must ensure that at least 80 per cent of the child population is covered by their programmes.
A simple but expensive IgM antibody test already exists to detect whether a woman, on the verge of motherhood, has antibodies to rubella. No effort has, however, been made to develop a cheaper test. The vaccine's manufacturers insist that it is easier to vaccinate the entire population of babies instead.

To the Government, Autism Isn't a Disability
Indian Express (Front Page)
July 27, 1999

Ankit is a four-year-old who can solve a jigsaw puzzle and yet cannot tell his parents when he is hungry.

Zaman, 14, can solve a complicated mathematical problem but is unable to figure out how his uncle is related to his father.

Remo is obsessed with elevators, and often goes up and down the multi-storeyed building in which he lives, to the chagrin of his neighbours.

All these boys have what is known as `autism', a life-long disorder, affecting one in every 500 individuals across the world. Autism primarily affects communication and social skills and the way people perceive the environment.Renowned Spanish psychiatrist and advisor to the World Autism Organisation, Joaquin Fuentes, who is here to attend a workshop, says, "Autism is not a rare condition. It is, rather, rarely diagnosed. Its symptoms are evident either from birth or may begin to appear after a period of normal development, but it definitely appears by the time the child is two years of age. It can occur alone or with such other problems as retardation or seizures. India and China are two major countries that have not recognised autism as a handicap. A recognition would help them provide facilities and benefits available to other handicaps."

A person with autism has distinctive behaviour patterns. Recounting the example of one of his friends, Dr Fuentes says George could deliver speeches at public fora but was obsessed with time. He would be able to say the number of seconds he has been alive, and flight schedules of the Luxembourg airport would be on his finger-tips. The exact cause of autism is not known, although research has determined the origin to be genetic with neurobiological manifestations. In case of siblings, if one of them is born with the disorder, the possibility of others being autistic would be 50 times more, says Dr Fuentes. In case of identical twins, the probability is heightened (70 to 90 per cent).

A person with this disorder could have specific areas affected. In particular, social and communication skills are impaired, even when the person has a high IQ. Fifty per cent of such people do not develop speech, while others may develop speech but could still have difficulty using language to communicate. People with autism have restricted emotional involvement and their capacity for imitation and sharing is less. More often, their language and mannerisms (such as hand flapping) is repetitive and stereotyped. They also have a limited theory of mind and fantasy life. Elaborating on this, he says, "We all have mental states. We try and change others' line of thinking. Political parties try to woo people to win votes or youngsters try convincing their parents for late-nights. An autistic would not do so. Moreover, they cannot empathise. They would not be able to imagine the grief a father suffers when his son dies in an accident."

Advocating the use of the term `people with autism' instead of 'autistic,' Dr Fuentes says, "There is no objective way to say a child is autistic. One can say he fits into a criterion of autism. We don't define people, it is a syndrome which is classified." Outlining the situation in India, Merry Baruah of the Action for Autism (AFA), a voluntary organisation, says, "Autism has not been recognised as a handicap in India. It is usually clubbed with mental retardation. There are hardly any professionals specialising in it. The lack of awareness, access to diagnosis and assessment and lack of consumer-friendly medical testing have compounded the problem."

The AFA runs a training centre for children and adolescents with autism. Recounting experiences with her 24-year-old son Ranjit, Shyama Prasad (name changed) says, "We felt so helpless without guidance on bringing him up. Medicines would have a dulling effect. He would withdraw into a shell or turn violent, if he did not have his way. Now, it is slightly better. With AFA's training, he has been able to work out mathematical problems, buy things from themarket, make friends and the like. Wish he had this training
much earlier in life."

Copyright © 1999 Indian Express Newspapers (Bombay) Ltd.