Wednesday, November 7, 2012

By default

I had written this article for the newspapers, post the movie Barfi. It never got published. One paper was kind enought to send me a reply stating that articles written only by the staff are published. So here it is , by default for my discerning readers :)-. It may be a little outdated , but what with the kids hols and everything else , I just got busy. There you go....

                       Autism is back in news, grabbing eyeballs. Thanks to Barfi, the disability is garnering the attention that has been overdue to it. The movie has stuck an emotional chord with most viewers. It has received its fair share of brickbats and bouquets. What has Barfi given us? It has given the parents, caregivers, professionals belonging to this ever increasing community of autism, a captive audience.


                        Unlike many disabilities recognized by the government of India, autism has yet to be recognized. It is not even mentioned in the census. Such is the terrible plight of children and adults on the spectrum. To many, autism is an alien Subject. There are an alarming number of children being diagnosed in India. Yet, one doesn’t see them in the general population; one never hears or speaks about them. They do not even have physical anomalies. The general public can easily identify with the sufferings of a hearing / visually impaired individual. But many wonder, what is Autism? It is so very difficult to accept that a very "normal" looking child has a major lifelong disability.

                   People on the Autistic spectrum are incapable of making themselves heard. It is one disability that everybody agrees unanimously, need a lot of support and encouragement, but it is one that is struggling to be heard. People on the spectrum have heightened or lowered sensory perceptions, impaired social, communicative and abstract thinking skills.

                  What is heartwarming is how the institutions, families that cater to the requirements of this disability have rallied around to offer unflinching support. Most of these institutions run on the will power (one has probably heard of muscle power, money power) of the management, dedicated parents and a support staff. Early interventions are known to work wonders. Over a period of time various teaching methods have been evolved to teach these individuals. Some children on the spectrum are gifted, some excel in music, math, computers,to name a few. The Challenge lies in identifying the hidden talents, give them intensive training and help them lead a meaningful productive life. Many a times it is the intuitive skills, faith and perseverance of the families involved that have bought out the potential in their children.

                     The children and adults on the spectrum need long time, intensive therapies. In addition, many of these children need dietary intervention and, medications. Abroad, some of the insurance companies provide cover for the therapies; there are many state sponsored programs. In India the costs have to be borne solely by the families. These families lead their lives by the simple rule of thumb! No day is typical. The institutions are also wanting in resources in terms of infrastructure, man power, and financial aid. There is an acute shortage of respite services. They need employment opportunities.

                       Autism is huge, and it cannot be captured on a canvass, however big it may be. There goes an old proverb “It takes a whole village to raise a child, and more importantly an accepting community to raise a child on the spectrum. Beyond the celluloid clich├ęs of the movie Barfi, there lives in a community in itself coping and dealing with autism, not bemoaning, not grudging, but whole heatedly supporting and spinning dreams of gold for their little ones. I watched Dustin Hoffman's Rain man in college, and back then; it was just another movie for me. Today, with a child on the spectrum, things are totally different for me. Please do lend your support to this community, either with your words, action, time, money. Support Autism.







7 comments:

malathianna said...

Very true.........

Anonymous said...

Hi, Its feels good to read your blog and your journey and adorable Ramam! I am a South Indian Mom living in US. I have a 7yr old typically developing girl(who is termed as a gifted child by school) and a 3 yr old girl(almost 4) recently diagnosed with autism. She lost her speech at 2. Your blog gives me ideas for recipies to try, even though we are not into GFCF diet yet. She is into a public pre-school autism program starting this September and we started a home ABA program of 10hrs/week where 3 different therapists come. We see improvement in her language but we have a long way to go. Pre-school is a blessing as it is a intensive ABA/VB and for 6 kids they have one teacher and 2 instructional assistants and we get 25hrs/week in School. She goes for OT and ST and also play therapy once a week. We had plans to R2I this year, but her diagnosis changed it and it is indefinitely postponed. :( Iam convincing DH by showing ur blog and asking him to see facilities available in Bangalore for Autistic Kids. For us, Potty training and getting rid of bottle are the issues, otherwise no behavioural issues as she is a bubbly, active girl who is always smiling. Attended a ABA potty training course yesterday here in a university which is very helpful but yet to implement. I am a full-time working mom, sometimes I feel its a everyday battle without family support which is costly to deal with as I am working only to cover her private therapy hours of 60hrs/month as insurance does not cover for ABA etc. Pl keep writing and it is an inspiration to read your blog and most of the posts are helpful and gives ideas! God Bless our kids! Thanks!

Mohan said...

Thank you.I attended the son rise program in Sheffield, mothers who attended the program told me that ABA is covered in their insurance and how they would convert their ABA therapist into son- rise therapist. you may want to check that out.
by Indian standards the charges here are also the charges are high, nothing less that 500 an hr- 750/1000. Bangalore, there are a couple of start ups ,it remains to be seen how they manage . Couple of schools have also shut down.

maybe give it some more time. As they say the other side of the grass is green.In terms of professionalism, documentation US is definitely a better place.

Padma said...

I got to read this blog on Barfi only today...and let me tell you, the day I watched the movie, I was very upset as I felt the movie producer/director has used some mannerisms of autism in the girl to make it entertaining, rather than creating awareness.And what we learn now, 1 in 150 births is a child with autism, it's real scary and very important that steps are taken to create awareness in a large scale.And ofcourse early identification and early intervention need to be strengthened.

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