Neurodevelopmental Disorders have become mainstream in not only in India but
also in many parts of the world. Disorders like Attention Deficit Hyperactivity
Disorder, Down Syndrome, Cerebral Palsy, Autism Spectrum Disorder, Asperger's
Syndrome etc. These disorders can often affect the emotion, self-control,
learning ability and memory of the person and could affect him or her for the
rest of his or her life.
However with proper training, psychological treatment,
help and social acceptance from friends, family and society will these people
with neurodevelopmental disorder could prosper. In India ever since movies like
Taare Zameen Par and My Name is Khan, people's perception of these disorder are
changing over time although it is a slow process due to the long term stigma
that people with neurodevelopmental disorders will never do anything in their
life and they're burden to their families and they are still called names like
“
retard” or “
mentally retarded”.
The article will focus on one such disorder- Autism. Take an example of a kid
named A, who has a difficulty communicating with his parents B and C. He also
cannot see the difference between the reality and fantasy and is making
repetitive movements like rolling hands or clapping his hands or he's putting
his toys in an order and if anyone does something that could displease or
irritates him, he could either throw a tantrum or go on full meltdown. Thus it
could be said that A is a person with autism.
Autism or Autism Spectrum Disorder in psychiatric terms is a developmental
condition which involves problems in social interaction, speech and non-verbal
communication.[i] It was first coined by Eugen Bleuler in 1908 when he was
looking into the schizophrenic patients and in the 1940s Hans Aspergers and Leo
Kanner pioneered the research of autism.[ii]
However it should also be noted
that Hans Asperegers was a member of the Nazi regime and he actually
collaborated with the killing of children with disabilities because the top
brass i.e.
Hitler and his minions wanted his people to be a perfect race without
any disabilities and the Third Reich was heavily involved in killing of the
children with disabilities.[iii] It is estimated that one in 160 children
worldwide has an Autism Spectrum Disorder as per the report by the World Health
Organization.
The said organization has also shown concerns about the unknown
reports of the lower and middle income countries.[iv] In the United States alone
about 1 in 54 children has autism and it is also estimated that boys are mostly
likely to have autism (about 4.3 times) than girls.[v]
Causes of Autism [vi]
There are some suspected causes for autism which includes:
- A member of the family having autism.
- Genetic mutations.
- The fragility of the X syndrome or other genetic disorders.
- Given birth by older parents.
- Imbalances in the metabolic system.
- Exposure by heavy metals and environmental toxins.
- The exposure of the medications valproic acid (Depakne) or thalidomide (Thalomid).
Symptoms of Autism
Earlier symptoms of autism show up when the child is of the age of between 12
months to 18 months when he or she is not able to make any eye contact, have non
verbal communications, is not able to respond his or her name, he or she having
little to no interest in other people and getting upset if someone changes his
or her daily routine etc. Most children with autism are not diagnosed until he
attained the age of 2 or 3.[vii][viii]
Other symptoms include: [ix][x]
Social:
- Avoidance of eye contact.
- Preference of being alone.
- Rejection or avoidance of physical contact. For example P doesn't like
get hugged by others.
- They don't want to be comforted when they're upset.
- They cannot respond to their name even after first birthday.
- Lack of understanding of emotions of themselves and others. For
example R's unable to understand the anger of her brothers.
Communication:
- Delaying of speech and language skills.
- Voice that is flat, robotic or singsong. For example E saying
that he wants chocolate in a singsong manner
- Repetition of same phrase. For example J saying “Give me snacks”
over and over again.
- Lack of usage of common gestures.
- Lack of understanding of sarcasm or jokes.
- Lack of staying on topic when having a conversation.
Behavioral Patterns:
- Repeating behaviours like jumping, clapping, rocking,
twirling.
- Lacks coordination or having clumsiness.
- Eating habits are fussy in nature.
- Acting without thinking.
- Extremely sensitive to touch, light and sound. For example L
covering his hears whenever he hears the sound of bursting of
balloons or crackers.
- Sticking to specific routines and gets upset when that
routine gets disrupted. For example C putting her toys in order
and when her brother throws one of toys, she gets upset.
- Aggressive behaviour. Throwing meltdown or tantrums. For
example when a child by the name of M throws a meltdown he often
hit himself like banging his head on the wall or hit other like
slapping his brother. Or when he is throwing a tantrum because
he didn't get a chocolate he requires an audience to do so.
- Lack of attention span.
- Obsessive on certain activities or objects. For example Q
having an obsession over stuffed toy.
- Constant moving and hyper behavior. For example B loves to
run around the house.
Treatment of People with Autism:
As of now there is no cure for autism however there are various treatments which
can improve the condition of an autistic child or adult albeit it could take
time. One of the first major steps for the treatment of a child or adult with
autism is the early intervention during the pre-school years which could
maximize the ability to function and also supporting to learning.
Other
treatments include:
Behavioural Therapy:
Reducing the behavioural problems of the person
with autism and teaching him or her new skills as well a teaching them how to
act, behave and communicate with the others. Such behaviour could be encouraged
through reward based motivation system.
Educational therapies:
Successful programs which include specialists and variety of
activities could help the child with autism to progress well
in school, especially if he gets the intensive,
individualize behavioural training
during the pre-school years.
Family Therapies:
Parents and other family members can learn how to play,
interact with a child with autism so that it could promote
social interaction skills, management of behavioural problems and teach the child daily
living skills of communication.
Medications:
Although no medication can improve the core signs of autism
let alone curing him or her, it can be used to treat behavioural problems like
if J is hyperactive or aggressive then he is required for medication to prevent
that or other disorders like depression or anxiety. One of the most
controversial medical treatments is the use of medical marijuana. Over the past
decade families have experimentally used marijuana to treat their autistic
child. According to the families and doctors medical marijuana has been used to
control insomnia, chronic pain and epilepsy. Although the US Food and Drug
Administration has only accepted one cannabis-derived drug i.e. Epidiolex due to
the legal and controversial status of marijuana in the US as it was listed in
Schedule 1 drug as per their federal law, drug which means it cannot be used
for medical purposes and it has high potential of abuse, many European countries
and countries like Australia, Jamaica, Israel and Canada the use of marijuana
for medical purposes is legal with specific laws varying from country to
country.[xi]
- Other Therapies:
Speech therapy, occupational therapy to teach them basic
activities of daily living and basic therapy to improve the
movement and balance of the person with autism.
Autism in India
As of 2018, about 1 in 100 children under the age of 10 have autism in India and
1 in 8 has at least one neuro developmental condition. [xii] Not only that, it is
estimated that 3 million people in the Indian Subcontinent have autism [xiii].
Now according to Times Of India, the masses in India either don't understand
what autism is (as they treat it like an enigma) or they just misunderstand and
compare autism with some sort of disease.[xiv] One of the shows
Aap Ki Antara
which tells the story of a young girl with autism and how she deals with the
stigma and discrimination of the society due to the lack of understanding of the
disorder. [xv]
One of the biggest examples of the discrimination of autistic people is when
they are denied to take admission in schools due to their lack of facilities to
handle them. Even those who have high I.Qs are not permitted to attend regular
classes. It could also be difficult for them to cope up with the pressures and
rigidity of the mainstream schools.[xvi] Autistic children are also vulnerable
to bullying [xvii] not only by their peers but also by their own siblings.[xviii]
Due to the lack of awareness, the society views the parents
who have children with disability as
tragedy worse than death and because of that, parents are
forced to hide their child's disability. They even fear the phrase
bache pagal
hai which kind of triggers a minute PTSD for them. This is just like a person
from lower caste hiding his caste because of the social stigma of the lower
caste or an alleged communist in 1950s America who is forced to hide because of
stigma formed by McCarthyism.
The negative perception of the society towards the
autistic individuals is nothing more than hurdles and challenges rather than
just integrate or accepting them. The social tension often affects the autistic
individual who might lose his or her friends, could face social isolation or the
loss or change of his or her career.[xix]
Autism and Law
The Constitution of India has given the Fundamental Rights to the people with
autism. It secures them a right of justice and they can enjoy equality of status
in the community. [xx][xxi]
- Article 14- They like every citizens of India are
equal before the law.
- Article 15(1) - The Government cannot discriminate
any Indian including the person with autism on the
ground of religion, caste of sex.
- Article 15(2)- Every citizens including the people
with disability cannot be discriminated on any grounds
for the access of any public places.
- Article 17- Autistic people cannot be treated as
untouchable which is a punishable offence.
- Article 21- Every person has a right to life and
liberty. It also includes right to education for the
children with autism in the age group of 6 to 14.
- Article 23- Prohibition of forced labour.
- Article 24- Prohibition of employment of children
under the age of 14 years.
- Article 32- A person with autism or any disability
can seek constitutional remedy and can move to the
Supreme Court by filing Writ Petition.
- Article 300A- No person shall be deprived of the
right to property.
Under Sections 80DD and 80U of the Income Tax Act 1961 states that people with
disability have the right to enjoy earnings of tax concession. The Mental Health
Act also provides various rights to people with disabilities.[xxii]
The Rights or Persons with Disabilities Act 2016 considers Autism a one of the
21 recognised disabilities. It gives certain rights and facilities to the
autistic people so that they could live their lives in a better way as well as
they are not deprived because of their disorder. Under the act 4% of the people
with disabilities can be given employment in Government Establishment. And the
person who has the disability benchmark of 40% is entitled to certain
benefits.[xxiii]
The rights and facilities of the autistic person: [xxiv]
Separate Law:
There is a special institution for the people with
Autism which was created by national law. Under the
National Trust for the Welfare of Persons with
Autism, Cerebral Palsy, Mental Retardation and
Multiple Disabilities Act (Act44 of 1999), the
National Trust is statutory body of the Ministry of
Social Justice and Empowerment.
Health Insurance:
The people with Autism, Cerebral Palsy and other
disabilities can get the health insurance of Rs. 1,00,000 by the Niramaya Health
Insurance Policy which was set up by The National Trust.
Housing:
the schemes set up by the GHARUNDA of the National Trust
provides affordable housing and minimum quality care for the people with Autism.
Schooling:
Early intervention and support setup by DISHA Centres to help
the children with autism and their families. Children who are in the age group
of 0 to 10 are covered under the scheme. Their aim is to make the kids ready to
attend the school.
Educational and Vocational Training:
Schemes set up by the GYAN PRABHA
of the National Trust provides people with autism monetary assistance for their
graduation and post graduation course as well as vocational course. The Rights
of People with Disabilities Act provides all children between ages of 6 to 18
free education.
Conclusion
There are movies, TV series and Web Series like The Good Doctor, My Name is
Khan, Apna Aasman, Aapki Antara, Rain Man, The Black Balloon, Mary and Max, The
Accountant etc. In Rain Man , the main character Raymond is an autistic savant
who could solve maths problem very easily[xxv]. In The Good Doctor, Dr Shaun
Murphy is an excellent surgeon.[xxvi] In the Accountant, Ben Affleck is a
skilled assassin. [xxvii]
These movies often portray people with autism as highly
intelligent and how they deal with the issues and stigma of autism in the
society, for example Black Balloon[xxviii].Video Games like Overwatch and
Persona 5 also have autistic characters. [xxix] There are also great people who
despite of challenges have become successful in their lives like Satoshi Tajri
who was the creator of Pokemon[xxx], Temple Gradin who is the author and the
advocate for autism and animal behaviour. [xxxi]
Owl City is a popular musician
and singer who is also confirmed to have autism.[xxxii] Every year on 2nd April
is celebrated as World Autism Awareness Day which according to the UN celebrates
and recognizes the rights of the people with autism [xxxiii]. According to
Article 10 of the Convention on the Rights of Persons with Disabilities, every
person shall have inherent right to life and liberty.[xxxiv]
Article 8 of the
said convention talks about the awareness raising [xxxv]; Article 5 talks about
equality and non discrimination and Article 6 and 7 talks about women and
children with disabilities. [xxxvi] And Website like Autism Speaks [xxxvii] and
Autism Society [xxxviii] also spread the awareness of autism through their
websites and social media.
In conclusion, society is dynamic in nature which means in time society will
change and what was once rejected will be accepted in the large mass. For
example the acceptance of the same-sex marriage in the US in 2015. In the
current millennia steps have been taken to include people with autism or with
any disability or disorder in the society by the government, by the schools, by
NGOs and by society in general. Inclusiveness cannot be brought either overnight
or by force, it has its own pace, that's why people are beginning to accept
people with disability or who belong to the LGBTQA+ community. After all they're
human beings too.
There are opposition to it and because human nature is the
reason for the unnecessary wars and discrimination as seen it in history from
World War II to the Rwandan Genocide. However the laws exist so that people
would enjoy their lives as they want to without being discriminated on any
grounds or on any reason. In time India will become a nation of inclusiveness,
tolerance and justice.
End-Notes:
-
https://www.psychiatry.org/patients-families/autism/what-is-autism-spectrum-disorder
- https://www.news-medical.net/health/Autism-History.aspx#:~:text=The%20term%20autism%20first%20was,admiration%20and%20withdrawal%20within%20self
- https://www.nature.com/articles/d41586-018-05112-1
- https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders#:~:text=It%20is%20estimated%20that%20worldwide,figures%20that%20are%20substantially%20higher.
- https://www.spectrumnews.org/news/autism-rates-united-states-explained/#:~:text=What%20is%20the%20prevalence%20of,higher%20among%20boys%20than%20girls.
- https://www.healthline.com/health/autism#causes
- https://www.nichd.nih.gov/health/topics/autism/conditioninfo/symptoms-appear#:~:text=The%20behavioral%20symptoms%20of%20autism,often%20appear%20early%20in%20development.&text=Many%20children%20show%20symptoms%20of,months%20of%20age%20or%20earlier.
- https://www.cdc.gov/ncbddd/autism/screening.html#:~:text=ASD%20can%20sometimes%20be%20detected,they%20are%20adolescents%20or%20adults.
- https://www.webmd.com/brain/autism/symptoms-of-autism
- http://ceril.net/index.php/articulos?id=624#:~:text=They%20can%20occur%20when%20the,a%20reaction%20to%20being%20overwhelmed
- https://www.spectrumnews.org/news/cannabis-and-autism-explained/
- https://www.spectrumnews.org/news/study-quantifies-prevalence-autism-india/#:~:text=About%201%20in%20100%20children,its%20kind%20in%20the%20country.
- https://www.healthissuesindia.com/2020/04/02/autism-in-india-why-we-need-awareness/
- https://timesofindia.indiatimes.com/life-style/health-fitness/health-news/Social-stigma-hinders-real-understanding-of-autism/articleshow/46794054.cms
- https://tripplemonline.com/antara-zee-world-full-story-plot-summary-casts-teasers/
- http://www.autism-india.org/autism-india.php
- https://www.forbes.com/sites/alicegwalton/2012/04/24/why-autistic-children-are-bullied-more/?sh=3bc24a45408c
- https://www.indiatvnews.com/news/world-not-just-peers-even-siblings-bully-autistic-kids-537144
- http://www.rehabcouncil.nic.in/writereaddata/autism.pdf
- https://www.autismconnect.com/blogs/rights-in-india-for-autistic-children-with-special-needs/
- The Constitution of India 2016 Edition by P.M.Bakshi
- https://www.indialegallive.com/legal/rights-of-the-people-with-disability-important-laws-for-the-differently-abled-should-know/
- https://www.lexology.com/library/detail.aspx?g=c606f652-6bf9-42d7-ab1d-a764c3215e0e
- https://wecapable.com/rights-facilities-schemes-persons-autism-spectrum-disorder-india/
- https://en.wikipedia.org/wiki/Rain_Man
- https://en.wikipedia.org/wiki/The_Good_Doctor_(TV_series)
- https://en.wikipedia.org/wiki/The_Accountant_(2016_film)
- https://en.wikipedia.org/wiki/The_Black_Balloon_(film)
- https://en.wikipedia.org/wiki/List_of_autistic_fictional_characters
- https://the-art-of-autism.com/how-satoshi-tajiris-autism-helped-create-pokemon/#:~:text=Satoshi%20Tajiri%20is%20a%20high,when%20you%20look%20at%20it.&text=genius%20behind%20Pokemon.-,Satoshi%20has%20gone%20on%20record%20saying%20that%20he%20wanted%20the,had%20during%20his%20bug%20collecting.
- https://www.templegrandin.com/
- http://www.citypages.com/music/owl-citys-reclusive-adam-young-opens-up-6761494
- https://www.un.org/en/observances/autism-day
- https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-10-right-to-life.html
- https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-8-awareness-raising.html
- https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on-the-rights-of-persons-with-disabilities-2.html
- https://www.autismspeaks.org/
- https://www.autism-society.org/
Award Winning Article Is Written By: Mr.Anish Bachchan
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