Is Autism on the Rise?
July 11, 2004
One in 500 Indian infants has it. Thats 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 were
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 arent 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 were 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 were 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 isnt
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 wasnt 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. Its 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 wont be able to talk.
Another child may be able to do a three-digit multiplication in the
head, but wont 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 hasnt
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
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
Not responding to questions by appearing not to hear.
Displaying no interest in playing with children of the same
Indrani Basu in Calcutta still cant 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 didnt 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
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
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 weeks 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, Basus son, now 21, sang a poem: So what the hell
I bite my hands/ How I can be strange in a strange mans land/
I just dont get your jokes/ Mindblind. Sometimes the colours
can hurt/ Im not really certain why I flap the lights/ But its
me youre 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
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 bodys biochemistry. While environmental
factors have not been ruled out, the president of Indias 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
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
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 theyd 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,
The organisation is planning to lay the centres foundation
stone in Jasola, behind Apollo Hospital, within the next month.
This school will be for autistic kids
Times News Network
February 6, 2004
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
Autism is a complex neurological disorder that impairs abilities
to communicate, socialise, respond to emotion or express it. How is
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
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
`Autism still remains an underdiagnosed
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
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."
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
Lack of eye contact
Apparent lack of response when called
Difficulty in peer group interaction
Difficulty in communication - verbal and non-verbal
Inconsistent responses to situations
© Copyright 2000 - 2003 The Hindu
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
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
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
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
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
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
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
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.
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
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
"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
"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
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.
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
"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
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."
© Copyright 2000 - 2003 The Hindu
Born different-- Autism: Early
diagnosis and intervention help
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. firstname.lastname@example.org The National
Trust: 011-23217411. email@example.com www.nationaltrust.org.in
March 3, 2003
India's autistic population could be 2 million. Why then is
it called a 'western disorder' like AIDS?
By Pramila N. Phatarphekar
Aditya, 6, is barely familiar with English, but spells "hippopotamus"
perfectly at first go without ever having seen the word.
Vishu, 5, recreates with plasticine the hubcaps of the Zen, Corsa
and Esteem cars, startling his mum who hadn't yet noticed that hubcaps
have unique patterns.
Deepak, 8, narrates a monologue on the glories of the Roman Empire,
when history has not even been introduced as a subject in his school.
Aditya, Vishu and Deepak may seem like the proverbially 'gifted'
children, the ones wooed by schools. But their reality is harshly
and decidedly different. Aditya has been certified as 'mentally retarded',
ie with a below normal IQ. Vishu doesn't attend a 'normal' school,
though he's a bright and happy sunshine student who wows everyone
with his observation powers and hand-eye coordination. Deepak was
shunted out of regular classes and put into a special education programme.
This is after getting admission in one of India's best schools by
virtue of his supernova smartness. Yet, a singular cause forces the
three to walk on different paths from everyday people. A cause that
links the gifted speller, a talented sculptor and a class topper together.
They have been diagnosed with autism, a wide-ranging disorder that
causes communication difficulties and baffling behaviour that veil
their abilities. This means that hyperlexic Aditya (he has superior
reading and spelling skills) uses one word as a sentence substitute.
Saying "hello" for him is as difficult as trying to lift
a one-kilo-steel-brick with his tongue. Saying "How are you?"
is even harder, since autism implies self-involvement—so your
response doesn't matter, nor make sense, to Aditya. Vishu, whose parents
call him "our little Sufi" because he loves to whirl endlessly
like a dervish, uses spinning to restore his sense of balance. Deepak,
who missed his mum when she travelled, never spoke to her on the phone—the
sensation of a receiver on his ear was unbearably painful. But more
disturbing than his disconnect with his mother is our deep disconnect
with a disorder which is not restricted to these three 'diagnosed'
The muted truth is that about 2 million people could have autism
in India today. The global incidence of the disease is 1 in 500, according
to the World Centre for Disease Control and Prevention, US. And it's
four times more common in boys than girls. Yet, its overwhelming prevalence
remains unknown and unproven in our country. Says Dr Shobha Srinath,
professor and head of child and adolescent psychiatry, nimhans, Bangalore:
"Though we may not have population-based studies to establish
its prevalence, the number of diagnosed cases is rising every year."
Says Dr Veena Kalra, professor of paediatrics, aiims, Delhi: "A
diagnosis is often 'missed', or confused with mental retardation (MR).
MR implies IQ deficiencies while autism implies language and communication
deficits. Though our population may not be 1 in 500, it is significant,
and growing." There's also appalling ignorance about the disorder
among everyday people and physicians alike.
That's possibly because autism is a kaleidoscopic universe, which
includes the highly gifted and mentally retarded, born orators and
the mute, children who haven't ever hugged a parent to those who kiss
strangers. Some who batter their heads against walls and others who
wail all day. Some who can't work zips but can happily navigate the
World Wide Web.Some who eat only whole dals, rajma or chhole for both
meals everyday. Who perceive a silently-turning fan as loud as a 16-engine
steam train crashing down the tracks. And many who make flapping or
rocking movements which confuse normal people—who stare and
call them paagal (mad). It is these bewildering behaviour patterns
that bind them together on the autistic spectrum, ranging from low-
to high-functioning.Yet, try as hard as they might, most can't seem
to twist their brain spanners to fully tune into everyday life (others
lack the motivation to tune in).
For parents of 'low functioning' children, autism is a mysterious
disorder that hides their child behind a dark, heavy curtain from
which s/he emerges, occasionally. These are the scattered "good
days" that help parents handle the crazy swings between silence
and the screaming fits and things like self-inflicted biting and head-banging,
and the daily toll (at least 10) of soiled sheets that don't disappear
once they reach adulthood; indeed, the number of dirtied sheets only
increase. Autism can wreck lives completely, subsuming families with
grief, pain and anger, till parents find the strength and faith to
cope. Knocking on doors for help, mining down to the last depths of
the internet, and travelling to Bangalore or Boston for a remedy is
a sacred ritual; as is a father's daily prayer: "Please god,
grant me a one-hour visitor's pass to help me enter my child's secret
But right now, neither god nor the government is listening. Says
Merry Barua, founder of Action for Autism (AFA): "Even though
autism is a far more complex disorder than most other recognised disabilities
like MR, it is still not supported by the People with Disabilities
Act. So we get no government funding, school grants or travel concessions
like other disabled groups." Even health insurance is taken away
when it is most needed. Says one parent: "Since I cannot certify
that my child is 'of sound mind' on my Mediclaim form, none of our
massive medical expenses get reimbursed." The only hope is to
reduce functional difficulties through early intervention. Intervention
means everything right now, for autism has neither any confirmed causes
nor any cure.
Even the Indian government has shrugged off autism, calling it a
"western disorder" like AIDS. But the hard facts flying
in the face of such ostriches are that in the last five years in Mumbai
city alone, three schools have been instituted exclusively for autistic
kids. Some Indian students have come from as far as the US and UK.
For, an educational package that includes speech and behavioural therapy
can come as cheap as Rs 1,000 a month here, plus one can afford a
domestic help. Most metros have learning centres for autistic children,
including smaller cities like Lucknow. In Delhi, the phone rings in
new callers from all over India everyday at the afa office. "The
reasons for this are awareness, loosening of criteria, and people
migrating for help," says Dr Vibha Krishnamurthy, founder of
Ummeed Clinic, Mumbai, where she meets over 50 autistic children every
"When a special educator diagnosed my second son with autism
at age two in 1999, the first thing that flashed in my mind was the
movie, Rain Man," says Shubhangi Vaidya, a schoolteacher then
working in Jaipur. The film is about an autistic savant (Dustin Hoffman)
who wins the affections of his brother (Tom Cruise). However, for
Shubhangi living in Jaipur, Hollywood and this happy ending were too
distant and unreal. "What I needed to know first was what this
meant for Vishu and us, as a family."
Understanding autism is difficult for any parent. Shubhangi's insights
into autism came from years of taking care of her son. But Vishu is
only mildly affected—he can control his behaviour, communicate
and may be accepted as 'normal'. He could well be in one of Delhi's
posh schools' special ed classes if his parents shell out Rs 12,000
every month. Instead, Vishu goes to Open Door, a pay-as-you-can model
school that provides the individualised learning programmes needed
by autistic students.
Doctors say that a particular tragedy is that most regular schools
in India reject or sequester autistic children.Even Deepak who dazzles
teachers with his brilliance, and is always first in studies, got
placed in special-ed because he lacked social skills. He would suddenly
lie down during lessons or leave midway without permission. Yet, things
are changing. Says Geet Oberoi, special educator at Orkids: "At
Bluebells, Delhi, which isn't a fancy school, they allowed me to attend
class with my student and that's how you evolve an integrated system."
The journey to adulthood adds more complications. Says Soni's mother,
Mina Oswal: "Hormonal changes at puberty made Soni's skin so
hypersensitive that wearing cotton underclothes and sanitary pads
caused her such trauma that she'd tear them off. She went through
unbelievable distress. This also reminded me to make her keep a 'one-arm'
distance with everyone, even her father and me. It's for her own good."
In Nikhil's case, when he turned 16, his mother explained the facts
of life. All was well, till Nikhil touched himself one day in front
of his mother and others. Stopping him as soon as she saw this, she
told him to find a private place. Nowadays, when he spends a long
time in the bathroom, she doesn't disturb him nor does she ask questions.
She believes autism does not mean Nikhil should be deprived of his
sexual instincts. And for Nikhil to be able to mind his privacy is
a giant achievement, since privacy is an alien concept for autistic
people. That's why Nikhil's improvements give hope to Vishu, Aditya
and Deepak's parents.
As for Vishu, when we photographed him recently, he screeched with
joy every time he saw the camera focus on him. But we did not see
him during Ashwin, the Diwali month that terrifies him. When the sound
of bursting crackers torture his sensitive eardrums and make him scream
in agony. Some days ago, when Deepak came home with bloody cheeks
after being punched by school bullies, it didn't hurt too badly, for
Deepak is back in the regular class. Aditya, now 10, called his mother
'Amma' for the first time in his life last Sunday. Witnessing their
kids make such amazing progress is more than good enough for these
parents now. And tomorrow? Even if these kids regress to their old
selves, their parents will still sing their anthem, We shall overcome,
the heart-rending hymn of the hopeful.
(Some identities have been changed to protect the children)
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 wouldnt
make eye-contact, avoid interacting with other children and throw
tantrums frequently. Thats 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
Once her son was diagnosed as autistic, Singhs 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,
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 isnt
convenient in terms of distance. We currently take her
to Vashi for therapy. But we arent looking at our convenience
right now, he reasons.
Autism-affected demand separate I-cards
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,''
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.
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.
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
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
"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
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."
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."
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
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
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
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,''
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
© Copyright 2000 - 2003 The Hindu
Their need is special
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,"
"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.
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
-- Violent behaviour towards others, throwing tantrums for no apparent
-- 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
-- Need for sameness and insistence that the environment remains
- 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
-- Use of meaningless language and difficulty in understanding abstract
-- Difficulty in understanding concepts and limited imagination.
(Some of the names have been changed.)
© Copyright 2000 - 2003 The Hindu
Lack of infrastructure affects the autistic
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
Childrens 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 dont 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
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 dont 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
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.
but we accept reality
Times of India (Mumbai)
JUNE 09, 2002
When Ravi and Chitra Iyers 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.
Its tough parenting an autistic child, considering its
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, its 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 sons 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 shes 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...
Times of India (Pune)
MARCH 02, 2002
There is hope for the citys 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.
unaware of disability in children
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.
wants land for national autism centre
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.
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
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.
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.
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.
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.
October 17, 2001
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.
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
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?
yet to recognise autism despite rising cases
June 20, 2001
By Frederick Noronha
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.
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.
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.
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.
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?
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.
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.
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.