Dustin Hoffman’s portrayal of Raymond Babbit in the film brought autism in focus. But only a few years ago, studies have begun and made people more aware of the disorder. Pankaj Khanna finds out how an autist child can live a productive life
Einstein, who is credited with developing the theory of relativity, and Newton, who discovered the laws of gravity, had those traits to varying degrees. Other leading figures like Charles de Gaulle, George Orwell, Beethoven, Mozart, Hans Christian Andersen and Immanuel Kant also had autism,” wrote Professor Michael Fitzgerald, Trinity College, Dublin.
The above statement simply confirms that there’s no need for parents with autistic kids to give it all up. Of course, it would not be easy for any parents to know that their kid is autistic. It means he or she will not have a normal school life and might not be able to have other privileges like friends, a so-called career, or marriage – things most of us tend to take for granted. But it isn’t that hopeless and dream shattering for sure, as experts feel kids suffering from autism could get better with time and proper therapy and care.
“It is so difficult a job to break such news to parents. But it is of great importance to let parents know at the earliest about the problem. Sooner they know, faster we begin to help them,” says Nidhi Singhal, clinical psychologist, who’s been associated with Action for Autism (AFA), a non-profit society for autism in South Asia, for last many years. AFA runs Open Door, a school for autistic children, in the capital. Sharing her experience with parents, she says, “When you tell parents that their kid is autistic, they initially don’t believe it. They would say he just doesn’t talk and you are calling him autistic.”
Inside a bubble
Autism is a little understood disability which impairs a person’s social, communicative and abstract thinking skills, yet often heightens sensory perception. “It’s a neurological disorder that affects the way brain function and prevents them from understanding what they hear, see or sense,” says Nidhi.
In a layman’s term, it means that an autistic person is trapped in a bubble world which has no relation to the world around. Unless trained how to express their needs, violence or intense behaviour becomes an autistic’s communicative tool.
Autism is a lifelong developmental disability which typically appears in the first three years of life. Many autistic children might not ever develop speech, while others who do may not know how to use language to communicate. Since its symptoms range from a mild learning and social disability to a severe impairment, it’s known as spectrum disorder as well,” explains Nidhi.
But she quickly clears any doubts adding, “Autists are no less than others. Many autistic people went on to become geniuses.”
What’s worse is the fact that causes of autism are still not known. “Though many studies have mentioned the role of genetics, others have not reached any final conclusion yet. There are no final answers,” says Nidhi, whose sparkling eyes while talking about such special kids says so much about her love for such kids.
She emphasises that autism isn’t a result of poor parenting, family income or educational levels as most of us tend to believe. “It could happen to anybody and parents should not blame themselves at all,” she says.
“We Indians have a typical tendency. Most of us will think our karmas or some evil effect has affected our kid’s life. It isn’t like that at all. It is a disorder. In fact, there were no studies earlier. Only 4-5 years ago, studies have begun and made people more aware,” she explains.
And if you are thinking you haven’t come across any autistic person, think again. One in every 250 persons has an autistic spectrum disorder and worse is 80 per cent of these sufferers are males. It is believed that there are more than 2 million people with autism in India. But why males are more prone? “No answers again,” says Nidhi.
It’s not madness
Autism is often misdiagnosed or misunderstood for mental retardation. Merry Barua, mother of an autist son who started the Open Door School, shares her traumatic experience. “When my son Neeraj was diagnosed with autism, there were no counsellors, no programmes, no understanding. I put my six-year-old in a ‘reputed’ special school. According to received wisdom, the school treated Neeraj’s ‘aberrant’ behaviour by tying him to chairs, locking him up, sometimes slapping and beating him. He responded with frightening violence. Finally, I withdrew him and went to the Options Institute in Massachusetts, US, to get trained to handle autist kids.”
So what’s the difference? Most people with mental retardation show relatively even skill development, while individuals with autism typically show uneven skill development with deficits in certain areas - most frequently in their ability to communicate and relate to others - and distinct skills in other areas. It is important to distinguish autism from mental retardation or other disorders since diagnostic confusion may result in referral to inappropriate and ineffective treatment techniques.
Ask Nidhi what kind of therapies are used to work with kids and she replies in a matter-of-fact manner. “Let me reiterate, it’s a non-treatable disorder. But still we take different approaches to help kids learn and communicate. One is medical approach that can be given to an individual with autism for symptomatic relief for associated behaviour or conditions, such as hyperactivity, obsessive behaviours, anxiety and so on. It is given if these traits of behaviour come in the way of one’s learning. Similarly, some diet supplements are given to improve some chemicals in the body. But what works best is behavioural therapy, simply because it is tailor made according to each individual. And only after meeting a kid we can tell what will work to what extent.”
Barua’s son Neeraj is a case in point. He now works at the Open Door school helping other children. Action for Autism, founded by Barua, also counsel and run intensive home programmes to equip parents. Indu Chaswal, a mother of two autistic children, says, “AFA made us realise that we can train ourselves and help our children.”
Recognising autism
An autistic child may look like any other child but has distinctive unusual behaviour and speech patterns. He or she may:
• Show delay in or lack of language development or loss of early acquired language
• Repeat or echo words and questions, reverse ‘you’ and ‘I’, express needs rather than emotions
• Rarely or do not use gestures to communicate
Enjoy rotating or spinning objects
• Be occupied with parts of objects like knobs, switches, wheels and pedals
• Enjoy rocking or hand flapping
• Repeat the same activity for a long time
• Appear to be hyperactive
• Be sensitive to sound or touch
• Prefer routine or structure, dislike change
• Become upset or laugh for no apparent reason
• Appear indifferent to pain, heat or cold
• Seem unaware of danger
• Avoid eye contact
• Appear not to hear
• Do not mix with other children
• Have difficulty in taking turns in activities
• Display good rote memory for nursery rhymes, jingles, facts and routines.
Help at hand
Autism Centre
c/o Prasanna Hospital
Deccan Gymkhana,
Pune 411004
tel: 91-020-25652246
e-mail: info@prasannaautism.org
web : http://www.prasannaautism.org
Pathways
Sunita S. Lele
14, Pooja, Pandurang Colony
Pune 411 038
Maharashtra
SAI
173, Ramkrishna, 2nd floor
10th Road, Khar West
Mumbai 400 052
Tel: 022-26007267
e-mail: kamini108@rediffmail.com
SAIRAM Autism
C/o Jai Vakeel School
Sewri Hills, Sewri Road
Mumbai 400 033
Tel: 022-24701129, 24702285
Samarpan
M.G. Road Municipal School
Opp. Parle Vidya Tilak Mandir
3rd floor, Above Marathi Medium School
Near Kesrekar Garden, Vile Parle (East)
Mumbai 400 057
Tel : 022 - 26336537, 56043998
Smt. Radhabai Jamnadas Thakkar Autistic Centre
Shree Manav Seva Sangh
255-257, Sion Road, Sion (West)
Mumbai-400022
Tel : 24092266, 24077350, 24015561, 24077327
e-mail: smss@bom8.vsnl.com
web: www.shreemanavseva.org
Forum For Autism
2nd floor, Block A, Jeshtaram Baug
Dr.Ambedkar Rd, Dadar,
Mumbai 400 014
Email: forumforautism@hotmail.com
Web: http://www.geocities.com/Autismawareness/
Khushi
A/1,Raj Mahal Apartments,
Service Road, Jogeshwari (East)
Next to BMC garden
Mumbai 400 060
Tel: 98195 61468, 98205 92543
Email: reena.singh@khushi.net.in
Web: http://www.khushi.net.in
Open Door
Pkt 7 & 8 Jasola Vihar
New Delhi 110025
Tel: 91-11-65347422, 40540991/2
fax: 91-11-40540993
e-mail: actionforautism@gmail.com
web: http://www.autism-india.org/afa_opendoor.htm