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Thursday, April 14, 2011


[Something I wrote about 7-8 years ago to help Nishant's schoolmates understand him …]

Some of you may have seen my son Nishant at school/Hippocampus. He runs up and down the stairs, seems very excited sometimes, very upset at some other time .He may have bumped into you or tried to push you over when you were at the computer or sand pit. You may have wondered why his behavior is so strange? Why he does not talk at all? Why one of his parents is always with him? Why all this when he looks quite a healthy normal boy? Is he just behaving badly?  Is he crazy? Nishant is actually not crazy nor is he badly behaved .He is just very different from all of us .He has a disability called Autism. This disability is very difficult to explain or understand as it affects a lot of areas of functioning in a person.

The first area where these people with Autism are badly hit is the area of speech and communication. They find it difficult to express themselves through language as well as gestures.

Try this out:
Imagine, you are suddenly transported to a new place where the people speak a new language that you do not understand at all and they also do not understand the actions you are making. You will feel quite lost won’t you and some of you may even feel scared.

 Further, imagine, the people in this new land keep thinking that you know their language and actions [gestures] and keep talking to you in their language and making faces and gestures at you. How would you feel? . You may feel anxious that they do not understand you and if this went on for days together you might even be in tears trying to understand them or respond to them .You may try to ignore them, try and convey to them to just leave you alone.

Also, because you are not responding to them, they may start dragging you around the place making you do the things they think you are supposed to do, How would you feel now? You may really not want to do the things they are making you do and you may protest by screaming, crying, having a tantrum or by even trying to hurt them or hurting yourself to get their attention to what you want.

This is exactly how a person with Autism feels – as if he is in a strange land where he does not know the language and the people do not understand him at all. Over time he learns some of the new language but just is able to use it to communicate his basic needs. Some children with Autism do not talk at all – they are mute. Some only repeat whatever they hear – they are said to be echolalic. These are different ways in which they cope with their difficulty with speech and language. Some learn to talk very well and have very good comprehension – that is they understand all that is said but still have difficulties with communication. It has been found that if children with Autism are taught language at an early age like one and a half or two years, they pick up much better than the ones who are taught later.

They also have difficulty understanding social rules .You may have realized that social rules vary from country to country and even within a country it varies from culture to culture and they also have changed over time .For example the Chinese think it is good manners to leave some food on your plate after a meal so that the host thinks you are really full and satisfied and could eat no more. In our culture that is considered rude, you are expected to clean your plate of the last morsel to prove you are happy and satisfied.

People with Autism find all these rules very difficult, as they do not understand their context and relevance .In a sense they behave like they are from another planet. They may stop eating when they are full, take something they like from someone else’s plate, eat with both hands etc. It takes a lot of effort on our part and practice on their part to teach them these rules.  And once they learn the rules, if you want to change them, it is even more difficult for them to accept the change.

Their difficulties in speech, language, communication and understanding of social rules, makes it difficult for them to make friends, hold good conversations, participate in social activities that are unstructured or crowded or new like parties or weddings. They also find it difficult to participate in games involving complex rules like chess and team games like cricket or football. This also contributes to their strange behavior or anxiety at times.

 Sensory integrative deficiencies have also been found with most people with Autism. This means that their senses like hearing, vision, touch, taste and smell may not be functioning well. Some senses are more acute and some are not working too well. Many of them have very good visual skills. Some may close their ears to certain types of noises. Sometimes they cannot use all their senses together  - for example they cannot see and hear together so even watching TV may be something very difficult for them !! This is also one of the reasons why they may not look at you when you are talking as they are trying to hear you and the minute they look at you face with your ever-changing expressions, they may not be able to “hear “ what you are saying. Also when they are looking at something, they may not respond, as they actually do not hear you – you may have to catch their attention by tapping on their shoulder or asking them to look at you.

Their brains are not very organized too. Just imagine if you kept dumping all the information you collect through newspapers, magazines, books, internet, photographs etc into a big box and do not clean or sort this box at all or you keep adding files in your computer in any order without deleting the unwanted files or having folders for each topic. Would it not be difficult to retrieve information when you want something specific? By the time you find the things you need you may get distracted by some other things you see while searching or you may even forget what you are looking for. Something similar happens in the brains of some people with Autism. Their brains do not prune or “cut off” the unwanted information. Hence it is like an overgrown forest where it is easy to get lost !!

Persons with Autism also exhibit some strange behaviors that may “look” bizarre or “crazy”. Some examples are excessive running, flapping their hands, spinning themselves, playing with spit, playing with their eyes – rolling eyes, rocking etc. They may be obsessed with an object or keep talking about a particular topic. These behaviors may arise out of their sensory difficulties.

Also since their lives are quite lonely, given the fact that only a few people interact with them on a daily basis and even these few may not be able to understand them all the time or be with them all the time, they develop means of occupying themselves in what we may perceive as strange ways. People who are in solitary confinement in a prison for years usually either totally switch off or find ways of occupying their body and mind like pacing up and down, jumping in one place or playing games in their minds, having imaginary conversations etc. Something similar happens to persons with Autism.

Persons with Autism sometimes have a particular area where they do very well. These are called “islets of ability” – which means that though they may have severe difficulty in some areas, they may be very good with some other stuff. Some are talented musicians, some are very good artists, some are poets and writers, some beat the computer with their ability to do arithmetical calculations. Some have very good memory – they can remember, names, faces, routes, whole books like the dictionary or the railway time table !!

Some children with Autism are able to go to regular schools and even go to university later in lives and lead independent lives. This depends on the level of Autism they have, language and communication skills, ability to function in a group environment, ability to learn abstract concepts and degree of behavioral problems. Also some are integrated into regular schools with some extra help or support like Nishant. Some others need more specialized help and care and hence go to special schools .In India there is a huge need for more integrated schools as well as special schools as well as respite centers and vocational training centers for people with Autism. This is because the level of awareness about this disorder is still poor.

The cause for Autism is still not known though a lot of research is being done in this area. Scientists and doctors feel that the persons with Autism are born with some genetic tendency to become so and there may be environmental triggers like the diet. Usually the disability is not very apparent at birth. However as the child is about two years old, based on the symptoms, parents and doctor’s can decide that the child has features of Autism .As it appears when the young child is developing, it is called a developmental disorder. It is also called a pervasive disorder as it affects a number of areas of development The degree of difficulty varies from mild to severe for each of the symptoms which makes each person with Autism very different from the other and hence Autism is called a spectrum disorder. Some persons with Autism can also have epilepsy, mental retardation, praxis or motor control problems etc.

Being exposed to a number of people of different ages, cultures and backgrounds and also different environments as well as having a number of things to do, from a young age, helps them to become less and less rigid and cope better and integrate better into the family and community The best way to reach out to a person with Autism is to spend time with him doing something that he likes or is interested. They may not fare well in large groups so it may be best if one or two of you interact with him at a time, initially in the presence of a person who knows how the person with Autism communicates and knows his/her interests and preferences. Over time you can share your interests with him/her and increase his scope of interaction.

Nishant likes swinging, cycling, swimming and trekking and long drives and holiday’s .He also loves animals and nature and trains and likes to read books or watch programs on these subjects. He also loves to see photo albums. He likes to play games on the computer. His favorite video is “The Lion king” .He loves to eat food and thankfully he also likes to work out at the gym so his weight is in check! He also loves hugs and cuddles and tickles and rough play. He likes to listen to music and dance once in a while too. He is also quite affectionate and never forgets a person who has reached out to him in some way or the other. He is good at his school work even though he cannot talk or write, he answers by pointing to his alphabet/number board or by underlining or circling the right answers.

Some children in Nishant’s school have asked me “Why did God make him like this?” It is difficult to answer that question but we can only be sure that since God created him, he must have had a purpose. Moreover as a part of God’s creation he must also be as perfect as any of us. One of the purposes must be to remind us not to take things for granted and to realize how blessed we are to be given the use of all our faculties mentally and physically. The other purpose one can think of is for us to go beyond our own goals and needs and to awaken the goodness that dwells in all our hearts to accept these children as our own and help them to the best of our ability. Probably they are God’s own angels who have volunteered to take on so much suffering in their lives so that we may become better human beings.

Before I stop I would like to share with you a few lines written by Tito who is a fourteen year old Indian boy with Autism. Tito cannot speak but can write poignantly. This is from his first book “Beyond the Silence”.

“A world of such                                                       My story could touch
Can’t it be?                                                                If your heart,
With acceptance and love                                      My hope would get
Not sympathy!                                                           The precious reward! “

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