Monday, December 15, 2014

Literal thinkers

                                             What is about literal thinking and autism?

                    Ramam’s friends had come over in the October holidays. He was very excited. And his expression manifested itself in few joyous shouts and screams from him. I then asked him to show his friends a tray full of glasses filled with juice. I got back to doing my work, when one of the mother’s remarked. “He is doing what Viji asked him to do”. He was literally holding the tray high and standing in their midst.  My intention was to ask him to serve the guest. So much for literal thinking and my failure to communicate to him.

                         If one actually looks at the way they process information, shifting their attention to the speaker, trying to process the words, and decode the meaning  , adding to the burden are all the prepositions, conjunctions we use while speaking. Communication difficulties makes it harder for them to clarify, and again as language usage is restricted, it has a snowballing effect.

                              I ask myself, what would the word “snowballing effect" mean to an individual on the spectrum? The children find it very difficult to read the verbal and nonverbal cues, the intonations, and the sarcasm in our voices. How can this issue be tackled? Here are some recommendations:

Don’t say things you don’t mean:    This was one of Merry Barua’s lectures I attended initially, she said don’t say things you don’t mean. For example, “If you don’t do your work, I will never speak to you”.
Say concrete things:   Instead of telling Ramam good job, it makes more sense to appreciate by saying, good writing.

Be careful with the words you speak: I have already given an example of it in the opening para.

Provide exposure to figurative language:  Use idioms, expressions, feelings, at an appropriate time, with the conscious effort to teach them. found this on the net.

                                This post is the second  of the series where I wish to go beyond our personal journey . The first one being on Scripting . Be back soon with more posts.

A fresh start

This blog has always been about Ramam. It has been about our interactions, joys and struggles with him. I now want to embark on a slightly different journey.  My blog has mostly been about personal anecdotes but this time around I would like to interlace it with my readings on the net, research a topic a little in-depth. I could have started in the New Year, but any day is a good day. If any of the readers would like to suggest a topic for discussion, I would like to take it up as the next topic.

                                          Looking forward to your cooperation and encouragement.

Thursday, December 11, 2014


           Off late  Ramam has began saying  many a  things that happened  in the recent past, or something he has done in his school. Sometimes he talks about something a week old, and starts talking about it out of the blue. And since his articulation is not clear , we have a difficult time getting to understand. Yesterday he was all excited about the Christmas tree he had decorated in his school. It is in his recent memory, but  I am not too sure if the event happened on the day he related it to me.                                          
                                    He spoke of the decorations , he wanted to build a house with blocks and put a roof top .[This was the first time he build a house and wanting to put a door , windows and particularly a roof for the house]. Despite this positive trend , many a times he gets stuck with some words and phrases and repeats them over and over again. His favorites are colors and shapes. Pink triangle, blue circle.  Again we have devised strategies  (as always) to deal with this, we ignore what he is saying if he repeats himself over and over again or say something like talking about shapes over. I just happened to chance upon this post on Emma's hope book Scripts - A communication bridge. And then I felt it might just be his need to communicate or his need to say something and not coming out in the intended way.
 "In the past I would have gotten all tangled up in the specifics of what she was saying.  I would have sought to reassure her about whatever it was.  But now, I understand that these scripts can serve as so much  more.  They can serve another purpose.  They are less about the words spoken and more about the emotions that are attached to them.  So when Em is happy she will often speak of some of her favorite people.  She might reference something that happened more than eight years ago, but that made her feel safe, or a specific time when she was really happy.  I've always thought these memories were nothing more than that."

                One blog led to the other and soon I was reading "Echolalia and scripting : straddling the border of functional language"- Musings of an aspie.  Functional language that we speak refers to the social function of language or pragmatics.  She speaks of an incident when she had gone to a restaurant,

Me: I’d like an iced tea, please.
Waitress: Would you like sugar?
Me: No, I’d like it  . . .
Me:  [can taste what I mean but the word is nowhere to be found]
Me:  [wow, cannot even produce a word that is close or any word at all]
Waitress:  . . .
Me:  [clearly, this flaily hand gesture is not conveying what I mean, is my mouth stuck in this open position now? will this silence go on forever?]
Waitress: Unsweetened?
Me: Yes!
Scripting can grease the social wheels and I think those of us who have trained ourselves to pass will often unconsciously default to scripting or echolalia simply to conceal the fact that we can’t find the right word or we’ve lost the thread of a conversation. After all, there’s often subtle, unspoken social pressure to keep a conversation moving along.
Scripting becomes nonfunctional when an incorrect or inappropriate script is offered up automatically by a brain pressured to respond.

                                    It is a must read post as she brings forth the difficulty they experience in producing the right words to say in social situations. Most of the time you ask Ramam , the usual social questions, how are you, how is the food, how are you feeling, how is the program , his answer is always the same , GOOD. As I now understand that is the default script, his brain has settled on.


Wednesday, December 3, 2014

Inclusion and disbility

                               Recently , I attended the India inclusion summit, and was accompanied by two mothers  enroute to the venue, and whose kids were in the age group 7-8 years. The conversation soon veered to  discussing kids. One mother said "I was worried my son should wake up before I leave, and I had prepared him yesterday that I would be going . I was so relieved when he woke up before I left and told him I will be back in the evening." Immediately the other mother asked her  " Does he understand the concept of Evening?" And I thought how weird, how challenging is  the problem of autism. I was for the the most a mute spectator and most of the time I tuned out. As parents we know the level of preparation that goes into every event, or change in routine. They were discussing medicines, therapies....... And one mother said ,"My son wanted a different chapati, and kept shooing away the chappati I offered him. I knew fully well what he wanted but waited for him to come up with the expression , different". In between one mother butted in and said " He is aware of many things, he knows all the latest versions of cars in the market, but...... he has to stim, he cannot sleep in the nights. The list is endless.
                               Sadly to speak with so many so called "virtues" our kids are marginalised to the sidelines of the society. There was hardly any representation of autism in the summit. To be fair, the summit itself was superbly organised , well presented. There were many truly inspiring stories, thought provoking speeches. The morning half especially was emotional.
                                        One of the speakers mentioned all of us have disability somebody cannot sing , somebody cannot swim, somebody has no money. yet we all live. I understood the spirit  with which he said and applaud him for his viewpoint, but then I also wanted to tell him that is hardly a disability. For autistic adults, to be accepted in society , having themselves heard, is a huge huge challenge and cannot be trivialized. An adult with cerebral palsy. an adult who is blind , handicapped all of them can advocate for themselves, but not an adult with autism. I hate it when people use euphemisms and call this population as being differently able, gifted, because it involves not just hardships for their families but to them as well. When there is one person with autism in the family, the whole family lives, eats , and breathes autism. Simply because it cannot be any other way.
                                                 I liked this particular speaker an ex army officer who is a paraplegic , and said how he was asked to be on some disability committee. And he asked why disability committee, I can serve on other committees as well that address different issues. I don't consider myself disabled. Another lady said she feels wheel chair "liberated " and not wheel chair "bound". So much for the indomitable fighting spirit.
                                       Having said good outcomes do come out from such events. I got to hear a lot of progressive thoughts, corp orates trying to include more  disabled people in their work force. Arnab Goswami has pledged to take it up as a cause and give it a lot of media coverage.The following year a  mother  whom I hold in very high regard has promised to put her son on stage  and represent the ASD community. And I am so much looking forward to it.  
                             This is  a song very close to my heart from the movie Chak de. I can do a bad translation of it.It says  do something, hold on to some values and do whatever it takes to achieve it.
 Kuchh kariye, kuchh kariye, nas nas meree khole hay kuchh kariye
 jid hai toh jid hai jee
Koyee toh chal jidd phadiye, too bedarayiye ya mariye .


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