Meeting with Dr. Ashok at St. John's Hospital

Dr. Ashok emphasized primarily on the need for a physiotherapy, occupation therapy and speech therapy in the hospital. He asked us to make sure we have the following: physiotherapists, psychologists, psychiatrists, perhaps a neurologist who visits every week, a pediatrician who is also specialized in epilepsy and gastroenterology (or alternatively, a visiting gastroenterologist), a nutrionist.

Also told us to consider some form of therapy or scheduling that helps autistic people sleep better. He informed us about people who are trained specifically to handle autistic people and asked us to consider having them in our community and also think about living quarters within the hospital for them.

Furthermore, he informed us of the problems we'd face. He told us stemcell intervention has not been researched and tested enough yet and procedures are far too vague and too expensive to be considered a practical option at this point of time. Another thing he shared with us is that he believes if diagnosis and intervention is started at a very young age (1.5-2 years) there can be vast improvement in an autistic child's performance and that there are no areas of the brain that are dead, just non-functioning because they've been left unused for a long time. And if enough of an effort is made early enough, it can make a very significant difference.

He stressed on the fact that it'd do us more good to visit places that deal primarily with autistic people - SSK, Asha, etc. and check out the facilities there.

For more detailed notes, contact Aneri.

Ruchika Nambiar

Kamini Rao said...
Dr. Sanjeev Jain from Nimhans said the same thing about Hyperbaric Oxygen Treatment that Dr Ashok said about stemcell intervention. Hmm.. We should include a research lab in our hospital for all these interventions.
1 August 2011 08:57

Ruchika Nambiar said...
Yeah, I agree, since we're not considering funding issues as yet.

1 August 2011 09:17
A.V.Koshy said...
Yes, I told you of a science and research institute in the evokation...
Although stemcell and HBO are not proved - everyone knows they are experimental - lots of parents are trying it - this is a fact one does not know whether to rejoice about or not.
It may not be true about no dead cells in all cases - the opinion varies - the main Indian stemcell doctor's hypothesis is of dead and damaged cells...Dr Ashok and I were there at the talk he gave and his brain slides were not openly refuted...
Nor is it entirely true about non-use alone and no damaged brain cells in the case of some co-morbidities but it is true that the earlier the diagnosis and the earlier the intervention the better the chance of recovery (not cure :) )
1 August 2011 09:35

A.V.Koshy said...
Superb work...

1 August 2011 09:41
Aneri Jhaveri said...
To add to Ruchikas notes, he also questioned us on the structure of our city. He asked us if it was possible to integrate an autistic care unit within the city so that the neurotypicals (mainly siblings) don't have to shift their life. He said that many parents were very angry with the fact that there was a question of segregation at all. He was proposing if we could have scattered centres for therapy/ treatment within the city itself. But I think, according to our plan, we could have one big clinical, therapeutic and educational unit specially made for the autistic spectrum so the residences aren't disturbed. For their housing we could have a customized service according to the needs of the autistic child, so that the entire family doesn't need to shift and their social life remains intact.
For our specialised medical unit, apart from what Ruchika said, he suggested having regular MRI scans for them, ambulatory EEG devices ( 48/64 channels) for recording their brain functioning and neuro imaging devices. He also stressed on having a proper support staff for the child at all times of the day. He said that it was very important to have training centres for caregivers of these children. He told us to visit http://thenationaltrust.in/ their goal is to make the autistic children independent and they have a special training course for caregivers. So in our community we could also have a special training centre for teachers/nurses who are also trained with autistics.
Apart from training centres, we could also have research centres for this purpose to make further progress. He said that kids who are diagnosed at an early stage in their life, treatment is more effective on them compared to others.
He told us to go visit places like Shrishti Special Academy, Brindavan Education Trust & Information Recourse Centre apart from Asha Kiran and SSK.

2 August 2011 03:03
Ruchika Nambiar said...
Hey Aneri, remember to e-mail this to Dr. Ashok as he'd asked for. :)