In Jo's Blog

Last week I attended a conference on Autism in Delhi. It was a remarkable gathering of some of the best-known researchers and practitioners in the world and the presentations were – almost without exception – of a very high order. I learned so much about how to recognize autism spectrum disorders, ways to work with children who have it and the potential these children have, especially with early and skilled intervention.

It was a pleasure to listen to the different speakers, each so expert in her (they were almost all women) field, each so articulate and persuasive about the importance of starting early and working intensively with children to help them develop their full potential. More than anything else, theirs was a message of hope, of belief in the power of children to change for the good and to develop the ability to communicate.

Yet, there was something which made me uneasy about it. Maybe it was the fact that it was funded by the Indo-US Science and Technology Forum, a government to government enterprise whose mandate seems to be to increase Indo-US business ventures. Maybe it was the “disclosure” in one of the speaker’s presentations that she was co-author of a book on the methods being presented in the conference from which she received royalties. Maybe it was another speaker’s suggestion that organisations in India should apply for funding to get some of them to come here and train our people.

I’m not sure.

Some of those experts have developed beautiful new tools and approaches to working with our kids which are tested and found to be almost miraculously effective in helping children to communicate both through speech and non-verbally, to manage their emotions and deal with their sensory processing problems. But those tools and approaches are copyrighted and very expensive. You have to be trained to use them and training is also very expensive.

I know the professionals who spoke at the conference are caring, committed people who want to do their best for children with intellectual disabilities. But I also know that Autism is big business and that India is a big market. And sometimes, when we weigh what’s best for children against standards and copyrights and the cost of testing and research, the waters get murky.

My friends Vibha Krishnamurthy and Anjali Joshi put it all in perspective with their presentations which detailed the realities we work with here in India: the enormous numbers of children, the lack of trained professionals and the inability most organisations have to pay for the expensive new approaches.

I know research isn’t free and that people work very hard to develop the amazing methods which, years later, we all just take for granted. But I also know that having a disability is already unfair enough without adding not being able to afford the best therapy to the mix.

So I’m interested in a little piracy, a little guerilla action, a little heist wherein, with some diversionary tactics and some well-planned strategy, we grab the knowledge and run . . .

Showing 2 comments
  • andrea

    Very thought provoking and one of the reasons I returned to school for Public Health (after years in speech therapy)- I have a lot of new tools and new perspectives but also feel frustrated at the systems and situations that affect many of the populations I work with.

  • jeyma

    Hi! am visiting your blog after a very long time. But felt good to see the vibrant background and the new look. "Take the Knowledge and RUN" – a good review dealing with the brutal reality involved in using various tools and assessment methods incurring cost.Since this is a platform which can provoke more thought and cascade further discussions, would like to share my thought regarding tools involving cost. To cite an example, construction companies which lay highways establish tolls to collect tax. This happens till the time there is a break even. Then the roads are transferred to the Government for maintenance with no tax to the end users.Similarly every tool could have a cut off period until the time the basic cost is recovered. Later it should be available free of cost to benefit the larger population which cannot afford to buy expensive tools. This might be possible with strong advocacy of professionals and other stake holders pushing for grants from their respective Professional Councils and Associations for complete funding of researches.Because every council and Association, charges a membership fee, a portion of which is dedicated for funding researches.
    In this information age, WE CAN focus our efforts towards making knowledge readily available instead of actually grabbing and running. This definitely needs time and patience as the saying goes' there is devil in details'.

    Jeyashree KS

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