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people have written to ask us: what is autism in India "like"?
Does it look the same as autism in other places? What kind of services
are available? What do families do? Is the prevalence the same?
These are all very intriguing and important questions. Some of these
we can answer from our experience working with hundreds of families--
for example, we have a good idea of what the experience of autism
is like for Indian families. However, without empirical research,
there are many questions about autism in India (and other places in
the world) that remain unanswered.
Data released from the CDC in April 2012 placed the prevalence of autism in the U.S.
at approximately 1 in 88 children.
No data are available from India to provide an India-specific estimate of the prevalence, and it is unknown whether there are variations
in this rate worldwide. Of note, however, is a study conducted in South Korea that found a prevalence rate of 1 in 38. While the disorder
is not rare, most people with autism in India have not been
diagnosed and -- more critically -- do not receive the services they need. This problem
occurs in many countries, but is especially true in India where there
is a tremendous lack of awareness and misunderstanding about autism
among the medical professionals, who may either misdiagnose or under
diagnose the condition.
of the major difficulties faced by parents of children with autism
in India is obtaining an accurate diagnosis. A parent may take their
child to a paediatrician only to be reassured that their child is
just "slow." Unsatisfied, they may visit a psychologist,
to be told their child is "mentally subnormal." Convinced
that their child does not fit the typical picture of mental retardation,
they may visit a psychiatrist, to be told that their child has attention
deficit disorder, and must be put on medication to control hyperactivity.
After months of sedation and unsatisfactory progress, they may again
begin a cycle of searching for the correct name for their childs
problem. Fortunately, the process of obtaining a diagnosis of autism in India is improving in the major cities, as more pediatricians become aware of the condition. Still, some doctors may feel that nothing can be gained by a diagnosis
of autism if the services are not there; yet, as more children are
diagnosed as autistic and more awareness of the disorder spreads,
there will be a demand for services. Schools will be forced to educate
themselves if they find that more of the population they serve is
there are not enough services to meet the needs of mentally retarded
children and adults in India, let alone those who are autistic. Let
this then be an impetus to create more, and ensure that the special
needs of autistic children are not ignored. There is also an urgent
need to begin planning homes and centres for these children when they
become adults: people with autism have a normal life span and many
will require supervision after their parents death. Currently,
the needs of autistic children in India are not being met in either
the regular or special education systems. With an understanding teacher
or possibly an aide, a more able autistic child can function very
well in a regular school, and learn valuable social skills from his
peers. However, even children with very high I.Q.s are often
not permitted in regular classes. Also, the rigidity and pressure
of schools in India can make it difficult for an autistic child to
cope without special allowences. Some middle and lower functioning
children, who form the majority of autistic children, may attend special
schools, but these schools almost always lack an understanding of
effective methods of handling the challenging behaviours of autistic
children. As one psychologist noted, "The kids just get dumped
or ignored at the special schools." Children with autism are
frequently refused admission in these special schools because officials
protest they are not equipped to handle autistic children, who are
sometimes more challenging than children with mental retardation alone.
We believe that special schools should invest in learning these techniques,
rather than turning parents away!
as a result of intense work by AFA with the Ministry of Health in
the mid-1990's, the Government of India now recognizes autism as a
disability. This development is relatively recent: formerly, schools
catering solely to autistic persons were not able to receive funding
from the government. Persons with autism were also not eligible for
concessions and benefits offered by the government unless they were
diagnosed as mentally retarded, yet many persons with autism are not
mentally retarded. Through the commitment of a community of parents,
siblings, other relatives, and autistic people themselves, people
with autism and their families now have a voice in the disability
legislation and movement in India. While we are pleased that autism
now receives recognition, there are still many issues to be negotiated,
legal and otherwise. Parents should continue to educate themselves
about the Persons with Disabilities (Equal Opportunities, Protection
of Rights and Full Participation) Act, 1995, to be aware of what are
their rights and benefits are as caregivers of autistic children.