Thursday, January 2, 2014

Autism around the world

Dear Readers

A very happy new year to you. I am writing this post from a small town called Purulia in India. We are at my parents' for the holidays

Where I am sitting – I can hear the loud gossip of a gaggle of ladies who are surrounding the tap right outside my parents house (as befits their premier status in the community).The ladies are collecting the government water which comes for an hour each evening and is "soft water"- unlike the hard water that is in the wells of each house .

The steady stream of stray animals that are semi-adopted by my mum and dad who come at their appointed time for food and conversation, has finally abated.

It's all so different from my rainy home in the suburbs of Seattle

In Purulia, I swap my Levis , for Salwar Kameez and a big red bindi and turn native for 4 weeks.
Since ( I think) I am both of the East and the west, I thought I would write some of my observations on autism in the east Vs Autism in the West.

Some similarities and some differences. (Of course these are my personal observations and not scientific statements so take it with a big pinch of salt) 

Awareness is great but you can have acceptance without awareness

R's grandparents don't understand autism per se, but they understand and accept R just the way he is.

He is a favorite owing to his quiet charming ways and his family tries to figure out what pleases this eccentric little person- handing him the calendar with dates when they see his fascination with numbers, giving over the main TV for his Wii and making sure that the Wi FI is working.

I do have the odd aunt who chastises me for not making sure R eats many varieties of foods, but for the most part they marvel at the way he smells everything and gasp with wonder when he plays a classical piece on the little piano on his iPAd. In every way they make him feel beloved and accepted

There are pioneers everywhere

In the city where my MIL lives- Dehradun – we go to see Nav Prerna.

The first autistic group home in India says the founder. We meet the kids who are attending a music class. Its a remarkable place.

Some kids come for daily therapy and some kids stay there.

 Many of the children are severely autistic but Saswati Singh( the founder and herself the mother of an autistic child ) has created a very well structured environment. She believes strongly in GF CF diet, no electronics and mostly organic and natural medicine.

The kids are thriving there.

Pioneer mums and dads too

Like in the West, Eastern parents also make great sacrifices for the kids. At the center, we met some parents whose kids just come for the day. One mother that DH and I chatted with for a long time has a 4 year old child at the center. To come to the center – she is living in a rented apartment and away from her husband.

I asked her whether her parents or in-laws mind this unorthodox arrangement to which she says " i don't bother about anyone when it comes to my kids."

There are many parents here too – just like the west – who are desperate for a cure not progress- ie they will mortgage the house for HBOT but not want to pay for therapy. In fact probably more so than in the west.

In the East, Academics first

Indian parents are obsessed with academics( if any of you have kids that have Indian kids in the class – you will see that this is one Indian stereotype that is very true) - and it's the same with their kids with autism.

As opposed to Seattle, where we meet many children who have higher functioning autism, each child with autism that we meet here is very obviously autistic.

I think parents do not seek a diagnosis for kids with mild autism. Also kids with no academic problems would not be seen as having any issues.

The social set up with the options still of joint families and arranged marriages is such that a child with Asperger's or HFA would have a ready-made structure to compensate for their social challenges.

I think both the East and the West have a lot in common when it comes to disability. They also have a lot to learn from each other.

The West has gifts of the scientific approach to progress for autistic children –while the East has the gift of acceptance.

In our home – we try to combine both 


jazzygal said...

A very interesting comparison, thank you for that. I sense a very big extended family involvement (for ALL children) and acceptance in the East that the West could definitely learn from!

A very happy New Year to you and your family :-)

xx Jazzy

Sophie's Trains said...

So fascinating. I am of polish descent and I very much agree that people don't seek a diagnosis for a mildly autistic child and even severely autistic they wait for them to "grow out of it" only seeking a diagnosis once their child is to start school. Unfortunately in my country it is not due to acceptance rather a profound lack of it, as in if can "pass for normal" then shall and if not well woe us. Happy New year to you guys!

Looking for Blue Sky said...

I love the idea of the family support, and I'd be interested to know how Indian families deal with behavioural issues and meltdowns x

Anonymous said...

Thanks for yhis post, it's very interesting!

Full Spectrum Mama said...

Really interesting observations. I would say the generational thing resonates for me as well - not so much as an East West thing: my grandmothers were soooo accepting of G in every way.
And the academic insight is a key one: here (I am in the U.S.), the social aspects of "high functioning" autism are often seen as impeding academic success -- and we do NOT have the social/family network support around adulthood and marriage that sounds so conducive to a range of ways to succeed in India for a range of people.
Great post!

robin said...

What a great post and so interesting about the two views on autism. Love that you guys are trying to combine both views!

Tanya Savko said...

It sounds like a phenomenal trip, for so many reasons. Reminds me of my trip to Nepal four years ago when I went with an organization that promoted autism education in developing countries. I loved meeting the families there and working with them. They were all so loving and beautiful.

Shovona said...

It is true what you say.... I think the crux of the matter is also associated with finances and also the acceptance by the parents themselves. ... if parents love their kids the people will love and respect any kid.....And fault finding parents will find judgemental associates for thwor kids

Your post as usual is awesome and made me think s while. Loved it

Floortime Lite Mama said...

Thanks so much all for your comments
LFBS - depends on the type of parent -

Jill said...

I remember A talking about the acceptance when he talked to us about your/his family in India. How wonderful and fascinating. I really enjoyed your blog entry. Welcome back my dear friend :)

Autism United said...

I have been reading views from other countries (not the states) regarding how families interact with autistic children and the differences. Very interesting stuff, of course we all love and dote on our special children's gifts and accomplishments, but it is surprising how some countries treat autism so different than we do here in the states.
Good read, today, thanks for sharing your holiday. said...

Very nice and helpful information has been given in this article)

Cameron VSJ said...

Hi there, my name is Cameron and I was just reading up on your family's journey. I had a quick question and was hoping that you could email me back when you have a moment. I really appreciate it, thanks!


Yuji said...

I missed this when you first posted... very interesting to get your take on the comparison of west vs. east.

Another random week in 2020

 Everything that I could say about 2020 has probably been said.  On the whole,  its not as bad as it could have been because I am with my tw...