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 

Floortime Lite Mama

On my life as the mother of an adorable 5 year old with Autism and Apraxia