I had first come across Autism, a long time back, when I had read an article in Reader's Digest about an Autistic girl, who had, with a lot of effort on her mother's part, had managed to overcome it to a great extent and live as much as a normal life as possible.
Since then, I remember reading a lot about it, but never really thought too much about it, until a colleague, told me that his 4 yr old son was diagnosed as Autistic and that he had come abroad simply because he was not able to get his son the necessary treatment in India. I had been pregnant at that time and to be honest, I had nightmares about it. Until then, I had just read about it, it was only after talking to him, that I realised how difficult it is to deal with it - for both the child and the parents. I have ever since, been reading quite a bit about autism.
Yesterday, I came across an article which was talking about the ethics of screening unborn babies for 'Autism'. Apparently according to the latest research, Autism is the result of an extremely 'male brain'. Autism is defined as a condition which brain development disorder ,characterized by impaired social interaction and communication, and by restricted and repetitive behavior. There was believed to be a link between immunization shots and Autism, which was later discredited, due to lack of information. Apparently, it was around the time of the MMR immunization, that children started exhibiting signs of autism, leading to the belief.
Children with autism often have extreme difficulty developing normal relationships with others. They tend not to share in the interests their peers have. In many cases these children are not able to interpret non-verbal cues of communication like facial expressions. Most people with autism have some impairment in language and many never speak at all. Children, with autism also tend to find change, very difficult to cope with. Autism is not a rare disorder, being the third most common developmental disorder, more common than Down’s Syndrome.
In India, I found this organisation - Action for Autism, which seems to be active in this field. Their website talks about how, until the 1980's there were hardly any children diagnosed with Autism in India.. Apparently, majority of children with autism routinely received a diagnosis of mental retardation. Their website also gives a lot of useful information for anybody with more questions on Autism.
Some of factors which complicate research and treatment of Autism in India is the lack of awareness. Social attitudes, political will and environment all contribute to lower early detection rates, which actually proves crucial in diagnosing and treating Autism.
The positive thing is , 'Autistic children can make significant progress if the intervention is appropriate and consistent. Depending on the child's individual skill profile and the appropriateness and intensity of intervention he or she receives, children with Autism can lead relatively independent lives.'
The more I read about autism, the more my heart goes out to every person who gets diagnosed with Autism and their brave parents who have to see their children through it all. I remember reading a mother's account, where she says, the only time it would really hurt, was when her daughter made no spontaneous gestures - like 'giving her mother a hug or a kiss or any such gestures of affection'! It just makes me thank god that we have been blessed with a healthy child! I just hope, that with the increased awareness and medical advancements, every child, gets to lead a happy and independent life
Other articles with information on Autism
http://www.guardian.co.uk/commentisfree/2009/jan/13/autism-health
http://www.autism-india.org/afa_aboutautism.html
http://www.astalavista.co.in/disability/autism-study.html
http://autismaspergerssyndrome.suite101.com/article.cfm/autism_in_india
http://www.autismsocietyofindia.org/
I also came across an online petition requesting the PM to take up measures to address the issues raised by families with autistic individuals..
http://www.petitiononline.com/ABPTNF01/petition.html
Edited to add : Just came across something else on the net today
http://www.dailymail.co.uk/femail/article-1116602/Why-face-truth-Having-autistic-child-wrecks-life-.html
Our world
4 weeks ago
11 comments:
Wow,thatz a wonderfully researched article Smitha..As a mother,i can empathize with those brave moms...It will be really sad to undergo such situations,but we will have to if it comes to our life too..
God bless ..Every disease is terrifying.
Well researched, Smitha.
Yes, the lack of emotional response from the child would be hard for the parents.
I have seen two films with characters having this condition-'Rainman' and 'Mercury Rising'. In both the depiction is considered to be fairly realistic.
I cannot imagine how I would have dealt wth something like this.
The curious incident of the dog in the night time" by Mark Haddon is a story told through the point of an autistic child.
I also first read about autism in Readers Digest and it seemed an impossible kind of life, this award wining book made it seem a little less frightening. Though no way easy for the parents.
I had a friend with an autistic sister. It was tough on family and on the child. The sister became extremely irritable at times. It was difficult for whole family.
Once this friend mentioned that her mother was so tired that she wished they had fetal screening back then so that she could have aborted the child. I know..I was shocked and numb hearing that..coming from a mother.
But to think further keeping all emotional baggage aside, may be the mother didn't want the child to suffer.
Well researched, Smitha!
@Nimmy, Yes every disease is terrifying I get worked up if my daughter has a cold! Parents of these children are so brave!
@Manju, Thank you.. I know, these movies did help bring some awareness to the general people.. We need some in India as well , I guess..
@IHM - I have to read this book now.. Did not know about it! My list is growing longer and longer!
@Solilo, I guess, I can imagine why that mother thought so.. Which I why I did not go into the ethics of screening.. I guess thats a very personal decision and one that we, really cannot judge, can we? Can't imagine, what your friend's mother must be going through.. I met a mother here - her eldest child is autistic, second child has down's syndrome and she was expecting a third - I was so shocked - and so amazed at her courage for even thinking of a third child! To each, his own I guess...
The blessing of having a normal child is taken for granted by most of us. Parents of special children have to go through a lot...yes I too wish that with the rapid advances being made, all parents can enjoy the blessing and joy of having normal children...
@Vinod, Its only when I read about special children, that I realise how much difficult life could be..
A great post.. nd even I remember the Digest article..
One of my ex-colleague too has an autisitc child and this has made him a very bitter person.I guess one cannot blame him. They have tried every means to train him and the child looks very normal.
I do hope as Vinod mentioned there will more advancement in the treatment and maybe even a final say on why it happens.
we can only thank the Almighty for the healthy ones that we have, though we still complain!
@Happy Kitten, Welcome! I can't imagine the condition of parents who have to face this.. You are right - can't blame him for being bitter..Lets just hope that medical advances make a difference..
Reader's Digest used to be very very popular mag, when I was growing up - I hardly get to see it these days :)
Nice post, Smitha. First time on your blog. Abraham Lincoln who had long legs was once asked "how long should a man's legs be?" he replied : "long enough to reach the ground" . If we are normal human beings, we must thank god for that... and help in whatever way for the unfortunate ones. Online petitions are not necessarily effective though (unfortunately) The ones that are doing actual work are the ones that need the encouragement.
Do read my latest post on tickledbylife.com here.
http://tickledbylife.com/index.php/on-being-a-slacktivist/
A wonderful personality development website i discovered lately!
Thank you Gopinath, and welcome! Yes, its only when we see the less fortunate that we realise how lucky we are!
I do realise that online petitions are of little use - Just put it there - just in case :)
From the look of it - the awareness has improved in India in the last few years.. Will check out your posts right away!
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