1 in 100 children below 10 have Autism in India

We might have seen children, or adult males or females, who act and react differently. Most of them don’t talk much, look down and sometimes they cry. They won’t respond to their names and repeat the words they speak. Many of us would call them Mout (for males) and Maechh (for females) in Kashmiri, which means a saintly person unaware of worldly affairs. These are the people who are actually suffering from neuro-developmental disorder known as Autism. I had heard about this disease earlier but I was myself not aware how these children behave and act?  It was only early this year I got to know what autism is all about when I happened to visit Learning Edge, which is a centre for Autism and early intervention. The children whom I found in this centre looked normal, with no signs of physical disability but the way they behave and act is  totally different.

When I had interaction with Shafaqat Gillani who runs this centre, I got to know that many people whom we would call Mout or Maechh are actually the people suffering from Autism. For the last many months I wanted to write more on this issue, but I didn’t get a chance to get more updates about this disease. On December 1st Thursday, I attended an awareness programme on Autism which was organised by The Autism Welfare Trust which runs the Learning Edge centre. During the break when I went to the washroom to perform ablution (wazu) , I met a man in his mid 40s who had come to the event along with his child suffering from Autism. When I saw the kid, around 7 years of age, I noticed he was autistic. The man who seemed very much depressed while performing Wazu told me that he is being tested by God, but I found his belief strong enough as he kept seeking Almighty’s help.

   

“I am depressed by the kind of agony and pain I have been inflicted with because of my disabled kid. People who don’t have children have only one grievance, I am tested every day and every night” he told me. This was a very emotional statement and tears rolled down from my cheeks when I looked at his beautiful son, doing abnormal acts and talking to himself ?

When different speakers threw light on Autism during the afternoon session, I decided to write a piece with the sole aim of creating awareness about this mental disability. I want our people to come forward as a society to support  organisations who work for children or adults suffering from autism. Unfortunately there are only a handful of NGOs who work in this sector and there are no Govt institutions for managing Autistic children. We need to make sure we have centres to Autism children at least in every district and every town.

What is Autism?

Before the enactment of Rights of Persons with Disabilities Act -RPWD Act in 2016, the Persons with Disabilities Act (PWD Act 1995) was in operation for many years. In the RPWD Act, 2016, the list of disabilities has been expanded from 7 to 21. This now also includes cerebral palsy, dwarfism, muscular dystrophy, acid attack victims, hard of hearing, speech and language disability, specific learning disabilities, spectrum disorders and Autism. In addition to it chronic neurological disorders such as multiple sclerosis and Parkinson’s disease, blood disorders like haemophilia, thalassemia, and sickle cell anaemia, and multiple disabilities have also been included under RPWD Act 2016.

Autism is also called autism spectrum disorder (ASD) which constitutes a diverse group of conditions related to brain development. ASD is characterized by some degree of difficulty with social interaction and communication. Characteristics may be detected in early childhood, but autism in most of the cases is not diagnosed during early childhood.  As per World Health Organisation (WHO), it is estimated that worldwide about one in 100 children has autism. In India 1 among 100 children below the age of 10 year suffer from Autism. There are a large number of children suffering from Autism in Jammu & Kashmir as well. Autism is a life-long condition, with appropriate and tailored support, children and Adults with Autism can make significant progress and live fulfilling lives. Consequently, it is imperative that people with Autism have access to specialist services that understand their needs and are experienced in developing their skills and strengths.

Autism Welfare Trust

Autism Welfare Trust is a public trust which runs the Learning Edge centre at Munawarabad Srinagar. This centre was established some years back by Shafaqat Gillani whose own son suffers from Autism. The trust has been established with a sole motive of creating and providing avenues for those children which are affected by various Autistic and other developmental disorders, who are not able to get facilities that can lead to their betterment and positive growth. Since Autism itself encompasses various levels of disorders the scope will cover anything related to Internal, Cognitive, Behavioural, Sensory, Social and Environmental issues leading to Autism disorder. Autism Welfare Trust works towards providing various facilities which make the lives of affected children easy and helps them to get integrated with society . The Trust has been working on two fronts: One it runs the Learning Edge rehabilitation centre where several children are taken care of from morning to evening and qualified Rehabilitation Therapists  are engaged for this work. Secondly the Trust also creates awareness about Autism and does advocacy with Government and civil society organisations.

Autism Welfare Trust needs support from our society  as many Autistic children belong to economically weaker sections of society. I was told that the majority of  children suffering from Autism do not get any rehabilitation therapy as there are no such centres available in Kashmir and their parents cannot afford to take them to cities like Delhi or Mumbai. Many autistic people die in road accidents and they get no care once their own parents are dead. They are abandoned by their own relatives in many cases.

Conclusion

We have a large number of trained Rehabilitation Therapists whose services the Govt could utilize in Sub District Hospitals or District Hospitals where centres for Autistic children can be also set up. The Govt must give financial assistance to reputed NGOs to set up such centres and as a society we can utilize Zakat money to fund such organisations.  Infact a proposal has been sent to Govt by Director Health Services Kashmir / Jammu to appoint a good number of Rehabilitation Therapists in every district. I would urge the Chief Secretary to look into this issue seriously.  I appreciate the Govt for constituting the State Commission for Disabilities under the Rights of Persons with Disabilities Act 2016 (RPWD Act). Govt has appointed an experienced State Commissioner Mohammad Iqbal Lone. I am sure under his guidance the RPWD Act would be implemented in letter and spirit. In addition to Rehabilitation therapy we also need to explore spiritual therapy to manage and treat our various disabilities and psychiatric problems. It was great to listen to Prof Mushtaq Margoob who threw some light on this issue during the awareness programme organised by Autism Welfare Trust on Thursday. I would suggest Prof Margoob to deliver a detailed talk on the subject very soon.

Dr Raja Muzaffar Bhat is an Acumen Fellow . He is Founder & Chairman of Jammu & Kashmir RTI Movement

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