International studies show that about 1 in 68 people have autism and its overall occurrence is uniform across the globe. This concludes that there are more than 18 million people with autism in India. (Representational Image, Flickr) Photograph:( Others )
World Autism Awareness Day is internationally recognised on the 2nd of April.
In an effort to raise awareness and understanding, WION digs deeper into the status and perception of the condition in urban and rural Indian society, efforts made by the government to address the issue, challenges faced by parents, and an inside view of autism.
Inside the mind of a person with autism
We asked doctors to explain as best they could what goes on inside the mind of the different autistic people we met. The doctors told us what the autistic people would say, if they were able to articulate it themselves:
“I understand what you say but I don’t know how to respond — words don’t come out. I do feel happy, sad, frightened and very confused and not being able to express is extremely frustrating. In my own definition of rationalism, screaming seems the only way to put out a message.
My ears are very sensitive to loud noises — it is painful. It’s like having microphone in your ears that catches every frequency — volume set to maximum. I try to filter out as many noises as possible but high-pitched ones are impossible to ignore.
I feel uneasy when I am touched — I withdraw human touch to avoid the overwhelming sensations. I want to feel good about being hugged but it arises anxiety — the type you get from stage fright.
My mind functions very differently from yours. It does not work by words, but through visuals — like videos being played in my imagination. When I hear the word "stop", I can only visualise the "BUS STOP" sign. When I hear the word "dog", images are of individual dogs I have known or read about. I do not think about a general dog. Thinking in images is very different from thinking in languages.
Also, I often fail to recognise faces until I have known a person for a long time.
The only non-visual thoughts I have are of music. I can clap out a rhythm by myself, but I am unable to synchronise my rhythm with somebody else's.
I don’t like changes - I don’t like wearing new clothes. I have a shirt assigned for each day of the week. If I cannot wear that particular one, I feel uncomfortable. I don’t know how to tell you that so I scream and cry. I need at least a few days to adapt to new types of clothing.
I wish you understand that the way you sense the surroundings are different from how I do. Stimuli that you consider safe sometimes seems threatening to me. At times, I feel the environment is hostile.
Only if you knew, my behaviour would be so much better.
I feel I don’t belong—sometimes, it seems like everyone else knows a secret that I don’t. I wish they would stop trying to change me and accept me as I am.” says a person with autism.
What is autism
Autism spectrum disorder (ASD) refers to a range of conditions identified by impairment of speech and social skills, repetitive behaviours, nonverbal communication and developmental delays.
“Autism can only be detected through behavioural tests. There is no medical diagnosis available since the disorder is not based on any particular biological marker. However, the behaviour itself may change due to intervention or the lack of it, making the condition mild or worse” Dr Prathibha Karanth, founder of Communication Deall, an intervention programme for autism, told WION.
The most evident signs of the condition tend to appear between the age of two and three years. It is known to be caused by a combination of genetic and environmental factors.
“Autistic children do not look physically different from their peers which makes it challenging for others to understand why they are behaving in a particular way. The mind of an autistic child perceives its surroundings differently. Abrupt pacing, rocking or hand flapping are their natural reactions to stimuli. Most cases have limited vocabulary and difficulties in establishing eye contact,” says Dr Meghna Mukherjee, an autism therapist.
They are very sensitive to any change in their surroundings. Any stimulus which may be normal for others could become a source of panic for the autistic. “If a child is used to wearing a red shirt on Sundays, it could be very distressing for that child if asked to wear a green shirt instead. Small changes in their routine or surroundings could cause anxiety. The mind of an autistic person could get attached to certain objects or people and any change may exhibit aggressive and self-injurious behaviour.” Mukherjee said.
The goal of autism interventions should be to help autistic people achieve their full potential while recognising that autism is a core component of the person. One of the myths surrounding autism is that most individuals affected by the condition will have a special talent.
“There are as many gifted people with autism as there are neurotypicals- statistically. Each one of us may be partial to some skills as opposed to others and that is what we see in them too. As parents and educators, finding those preferences and interests will definitely help in long-term planning of leisure and skill development.
It is important to explore and expose the children to a range of activities and skills.” says Gita Srikanth from Chennai-based NGO for autism, WeCAN.
India vs The West
Autism is not uncommon—it is known to be the third most common developmental disorder. International studies show that about one in 68 people have autism and its overall occurrence is uniform across the globe (CDC, 2014). This suggests that there are more than 18 million people with autism in India. It is four times more commonly diagnosed in boys than in girls
In the West, some countries provide fully sponsored autism programs, subsidies in occupational and speech therapies, social skills groups, special schools. In the United States, more than $200 million are allocated towards research and services.
India, however has a long way to go. “In India the onus for everything is largely on private bodies and non-government organisations. There is some support under the National Trust, but it's a fraction of what is required. Government support is mostly through financial ‘grants’. The quantity of grants is limited and the process for accessing grants lengthy and complex.” said Merry Barua, Director of Action For Autism and National Centre for Autism.
Autism is officially recognised as a disability. Karanth says, “Indian government has stepped up its efforts in the recent past. It is expected that the recently passed legislation for those with disabilities will help ameliorate their difficulties to some extent. However, in practice a lot more needs to be done.”
Autism in Rural India
Mental and neurological conditions in India are perceived as a taboo. The major population resides in rural areas, where the knowledge about autism is very limited. It could be easily mistaken with other conditions.
“In rural areas, autism remains largely undiagnosed. At one level, individuals living there are often absorbed into the life of the community, working on the land and in home. The bottom line is that along with diagnosis, we must also have the accessible services in place. Giving a diagnosis and then telling families — ‘Sorry we have nothing for you’ — is devastating.” says Barua.
There is not a whole lot of accuracy in diagnosis and intervention. “It remains an enigma and there are many myths about the condition that simply refuse to go away. While people who can read English and have access to the internet can read loads of literature on autism, some relevant and a lot of irrelevant matter too. It does not necessarily translate into better understanding of the condition or better services,” says Srikanth
According to a study conducted in the rural parts of Goa, parents’ perspectives often differ from traditional scientific or professional ones and frequently invoke spiritual, moral, or personal interpretations.
Indian parents recognise symptoms of autism six-10 months later than families do in the West.
Potential reasons given for the extra time prior to help-seeking includes local cultural beliefs like “boys speak late,” which perhaps normalises early unusual behaviours.
Some parents of autistic children consult Ayurvedic doctors, who determine that "a nerve got choked somewhere" while babas (religious men) come up with the notion that there was a "shraap" (curse) and the only cure would be a Ganesh Aarti (religious service).
The most common speculations for the condition in rural areas include genetics or chemical exposure, potential links to other children in the family with developmental issues like a “spastic” relative, mother mistaking medications during pregnancy.
People with autism are physically indistinguishable from the general populace. As a result, they are largely viewed as misbehaving, disruptive or defiant. Society does not empathise with the challenges that persons with autism face, the way it does with other visible disabilities.
“Persons with autism face widespread discrimination and are often barred from participating in civic and recreational activities. Schools are by and large not inclined to admit them. Employment is closed to them. They are often asked to get off public transport,” Barua said.
In India, children are assessed mainly on academics and parents have high expectations. With such hopes, it is very difficult for parents to even acknowledge the condition. The kids are bullied in school since the young ones cannot understand the genuineness of the difficulties of an autistic child.
“There is a great need to make education inclusive. However, school practices are strongly exclusionary and getting even more so. High scorers are feted and children who might ‘pull down the rank of the school’ are not welcome. Parents are often actively asked to pull their children out. Bullying is a big issue. Children on their own are not born bullies. They learn to be bullies from parents who are inclined that way and from their teachers as well. A classroom with a truly inclusive teacher will have little bullying happening” Barua added.
Parenting an autistic child
Parents of children with autism do face a fair amount of stress. Everyday activities like traveling or shopping with the child could be gruelling as they have to be prepared to manage an emotional meltdown in the middle of the mall or grocery store.
“Parents have to become experts on their children. This includes identifying their strengths, weaknesses, what the child enjoys, their sensory sensitivities and creating a customized treatment plan for them” said Mukherjee.
Some autistic cases may require special educators, psychologists and occupational therapists to help them acquire social, language skills and basic educational awareness. This may lead to excessive financial burden on the families.
It is sometimes a lonely experience. “Raising an autistic child also arises difficulties in parent’s marital life since they tend compare themselves with other couples who have 'normal' children. Moreover, organising their own life around the child’s is also a challenge. They have to make sacrifices and that could be mentally tiring at times,” she said.
All human beings crave acceptance. According to Barua, parents need to accept their child with his autism. The greater the acceptance, the happier will the child be, and the better able to learn.
“If we want society to accept and include our children, we have to lead by example. Parents often share how upset, and disturbed they feel by the way society looks at their children. Yet the same parents are also embarrassed by their children and their behaviours. As a parent, if I am ashamed of my child, I cannot expect the wider society to be accepting,” Merry Barua, who is also the mother to a person with autism.
Parents feel they're not doing a good job if their child does not behave normally or when they are not able to control their autistic behaviours.
“Parenting an autistic child requires a lot of patience and unconditional love. Most imperative step is to realise and accept that their child is different.
Being a parent means to go beyond the usual threshold of patience. Autistic children may present a bigger challenge but they are wonderful unique creations who deserve to be treated with pride and respect. Parents will make mistakes in the process but that’s a part of it. They need to learn to taper off expectations of what their child could achieve and embrace how the kid is. Being different is not a crime. They behave perfectly, keeping in mind that they are wired differently. Take help, talk to other parents with similar situation.” advices Mukherjee.
‘What about after we are no more?’
This is probably the biggest fear of every parent of a child with autism. Unlike some Western countries, there are few residential facilities for people with autism in India.
The child should be trained to live in a group home since that may be the need of the hour after the parents are no more to provide the necessary support to the adult with autism.
“Some parent organisations are working towards ensuring that their children are looked after by setting up group homes. Indian government is providing support through the National Trust.” Karanth added.
It is necessary that any such residence that provides a structured environment, and predictable routines where individuals are able to function independently in their capacity.
It is also very important for autistic adults living in such residences to have ample opportunity to integrate with society so that they do not live isolated lives.