Just a Coincidence?

It is exactly six months today, since we started staying in this remote village Mulanjur in Palakkad district of Kerala.  Only today we could go to the village temple, a very old temple in the middle of forest.  It is Mulanjur Bhagavati temple.  I loved the ambiance there. Very calm and quiet; It’s just bhakti everywhere. No show offs; no sales of items; no noises around; no VIPs; traditional Kerala style temple, with absolutely no commercialism.  As the Covid scare went down, regular pujas started in the temple.  There was no big crowd, but people kept coming.  It is Mahanavami day today.

Inside the ‘chuttambalam”, there was another Devi deity, and nothing was written there.  When I checked with one temple employee, I was told that, the deity is disabled daughter of the main deity Bhagavathi.  The main deity Bhagavathi has other daughters who have temples in the same and nearby villages.  Whereas, this ‘disabled’ daughter was kept in the same temple as the Bhagavathi wants to keep this daughter with her, to take care of the ‘disabled’ daughter.  And the villagers believe that the Mulanjur Bhagavathi is a ‘Supreme Care Giver’ to all persons with disabilities.  

I was very surprised to learn this, as we landed in the same village (Mulanjur) with our ‘differently abled’ daughter.  Also, we, the 100 families with children with ‘developmental / intellectual disabilities’ are going to stay in this village and take care of our children together, and the presiding deity of the village is considered as ‘supreme care giver’ to persons with disabilities.

I am Baffled with this coincidence.

Over to the next phase..

Twenty days back we relocated to Kerala.  From buzzing Mumbai to a remote village called Mulanjur, near Ottappalam town in Palakkad district.  Quite a few people were asking me why are we leaving Mumbai.  First, let me tell you why did we come to Mumbai.  We came to Mumbai for a reason.  When Pratibha was 10 years old, she was almost non-verbal.  We felt vibrant Mumbai can help her transform.  It did happen.  She transformed to a chatterbox.. She did her Bharatnatyam Arangettam.. She started pursuing her passions, music and cooking.  She was enjoying her life to the fullest, learning and playing Sitar; and working at Arpan, as a Cook / Chef.  

We felt it is time to get into the next phase of her life, and ours too.  Four years back, we joined project Nishchintha (निश्चिंता), which aims to provide an answer to the most worrying question in our mind “What After Us?” for Pratibha.  With whatever goal in mind we came to Mumbai, that not only got fulfilled, but exceeded our expectations.  We hope the same will happen in our next phase of life at Nishchintha too.  

I was surprised that we haven’t seen a crow in last twenty days, where we stay.  But we have plenty of peacocks, cuckoos, cranes and many other bird species here.  It’s about 14 acres of land where we are setting up Nishchintha village.  We also have about 6 acres of paddy field adjacent to it.  Absolutely beautiful, picturesque and serene ambiance.  Unpolluted and blessed with diverse flora and fauna.  

We have been allotted a flat on the top floor of a 5 storied apartment block.  It is not ready yet.  Hoping to get it in a weeks' time.  Many villas are complete and some of them fully furnished too.  Those villa owners were magnanimous in offering us their villas for temporary stay till our flat is complete.  We are staying in one of those.  After almost 35 years of staying in flat / apartment type building, we are experiencing staying in a villa.  We are the second family in Nishchintha village. Hope our move might inspire more families to move into the village and start community living here.  

We were initially a bit apprehensive on how Pratibha would adjust to the new environment.  From buzzing Mumbai to a sleeping village.  Almost no one to interact.  Not much activity for time being.  Once the Nishchintha village becomes operational, I am sure, she will be busy 24x7!  And now for past twenty days, she is absolutely happy, enjoying the new environment, seeing the beauty of village, walking along the narrow walkways in paddy fields, adjusting to frequent power failures, enjoying the minimum shopping - shopping for survival - that we do, doing cooking activities at home, playing shuttle badminton, helping mother in all household activities, and having many new experiences.  Once in a while she tells that she misses Arpan and her friends in Mumbai, but absolutely happy here.

Now little bit on Nishchintha project.  Nishchintha means “worry-free”.  The project is an initiative by a group of parents having children who are developmentally / intellectually disabled.  The objective is to live together as a community and take care of children together.  Also train the children to live independently or with assistance, so that after the parents are no more, children can live in the care rooms comfortably.  Fifty villas and fifty apartments are planned.  About 20 villas are complete and work on another 15 in progress.  15 flats are about to get completed and one of them is Pratibha’s.  We will be having a common kitchen and dining hall, so that we don't have to cook at home.  We will have more time for the community activities.  This would immensely help in bringing in synergy in our community living.  We are also setting up a National Centre for Assisted Living and Skill Development (NACALS), in which we will be offering therapy services, vocational activities, skill development, care room training, and employment opportunities for our children as well as persons with developmental / intellectual disabilities from outside.

We plan to go with the nature, and practice sustainable living.  We have few wells to meet our water requirements.  We are working on harvesting rainwater, so that ground water is recharged leading to increased quantity and quality of water.  All our bio-degradable waste will be converted to energy and manure through biogas plants, which we have already constructed.  We are in the process of setting up systems for using solar energy for some of our needs.

Now the life here.  We get up everyday morning listening to honks of peacocks, cock-a-doodle-doo, chirps of many small birds, chatters of many different species of birds.. but we haven't heard a "Ka Ka" of crow!  Our early mornings are sitting on the verandah of the villa where we stay now and watch all these and enjoy.  We could see families of chickens moving around.  Pratibha watches them and tries to identify who is papa, mamma, kids etc!  Then we see peacocks and peahens roaming and flying from buildings to buildings.  Beautiful peacocks with long tail with colourful feathers.  Then comes cows and calfs.  Always there are two cranes (white birds) on both sides of one of the cows, moves along the cow, as if they are guarding and protecting the cow!  Amazing scene.  Evenings we walk within the campus.  We frequent near a rivulet that passes by the side of our premise.  The clear water in the rivulet and bushes and trees on the banks give very refreshing feeling.  

Going to the paddy fields and walking along the narrow walkways not only gives us fresh air, but is also immensely fulfilling experience.  As it was time of sowing seeds in paddy fields, we could participate in that, in our own paddy field.  We pluck tender mangos from trees, raw papaya from papaya trees.. We get many different varieties of spinach all around; just pluck, wash, chop and stir fry..You don’t need anything else with chapathi or rice.  All these are new experiences for Pratibha and she is thoroughly enjoying.  Buying milk from a house nearby was another new thing for Pratibha.  Here they milk the cow and give us the fresh milk. 

Altogether a different life.. Both Asha and myself lived in village during our childhood. So no issues for us to get adjusted to.  But for Pratibha, it's all new.  She is looking at only the positive side and thoroughly enjoying the new life. That's a big relief for us.  When more people are around here, she will start enjoying more. 

We are looking forward to a successful next phase of our life here at Nishchintha.

Gender Ratio in Autism

Many studies were conducted to estimate relative proportion of boys and girls with autism spectrum disorder.  It is found to be around 3.5 boys to 1 girl.  There appears to be a diagnostic gender bias, meaning that girls who meet criteria for ASD are at disproportionate risk of not receiving a clinical diagnosis.

Lots research has been carried out to find why are boys apparently susceptible to ASD.  With the causes and origins of the disorder themselves still only vaguely understood, it’s hard for scientists to provide a definitive answer to that question.

Information processing by persons with Autism [Autism Acceptance Campaign 2021 - Day 11]

This is the 11th post of Autism Acceptance month.  Today let’s try to understand how differently information is processed by persons with Autism.   We will see just major differences in this post.

1.  Think from bottom up.  

The neurotypicals generally think top-down.  We are tuned to quickly understand abstractions and then go to the details.  Autistic persons generally think the other way.  They see the details first, and slowly start understanding the concept, which is bottom-up approach.  

2.  Take things very literally

If anything you tell them, that needs to be interpreted using some common sense or in some social context, then they would find it difficult to understand.  They take it very literally.  For example, “It’s raining cats and dogs” is a form of figurative speech.  It implies that it is raining heavily.  An autistic person would interpret it literally and will wonder where are cats and dogs.. 

3.  Harder to remember sequences

If we give a sequence of commands to an autistic person, and you can’t expect him / her to do it in the same order.  Most of them can’t remember the sequence.  After a lot of trials and repetitions, they would become master of that specific sequence of commands.  But it takes long.

Because of such differences in the way information is processed, it becomes very difficult for neurotypicals to communicate with autistic persons.  Our communication has lot of implied information, which the autistic persons will not be able to decipher, understand and act on it.   When I started teaching music to different autistic persons, I realised that I have to have different approaches to communicate the same thing to different persons.  It took me quite a bit of time to understand how each person processes the information and adjust myself while communicating with each person.   

In order for us to accept autistic persons in the society and be comfortable in an inclusive world, it is imperative that we understand such differences and be empathetic towards them.

Siblings.. The forgotten children of Autism [Autism Acceptance Campaign 2021 - Day 10]

In today’s post I am touching upon a point, which generally goes to back burner in many families.  Sibling(s), of an autistic child.  When parents and other family members comes to know about their child’s condition (child with autism), focus of all in family shifts to the autistic child.  This invariably affects the siblings.  Many siblings almost lose their childhood.  Siblings will not be able to understand the differences between them and cope with it.  This is a bigger challenge for families to ensure that the effect on sibling is made to minimum.  Siblings have their own challenges. Some find it hard to admit to their friends that their brother / sister is autistic.  They suffer socially and try to keep away from their autistic brother or sister.  I have seen many siblings handle the situations in a very matured manner.

On the other hand, siblings are the ones who contribute most for development / growth of an autistic child.  Them not knowing the complexities in a way helps them to handle the situations better.  Here are few quotes from siblings:

“I am sibling of someone who is autistic.  I believe this is the best thing that ever happened to me because now I see the world through the eyes of possibility.”

“When I see friends messing around with their brothers and sisters, it makes me realise that I’ll never have those kinds of moments with my siblings.  It hurts to know that nothing is ever going to be normal.”

“My brother is loving, brave, funny, smart, inspiring, unique, silly, cool… all this and autistic too!”

Autism siblings are special too.. High-Five to all brothers and sisters who support their sibling who is living Wirth Autism.  

“You all Rock”….

Celebrities with Autism - Susan Boyle [Autism Acceptance Campaign 2021 - Day 9]

I love listening to music, whatever be the genre. I have been regularly watching most of the episodes of Britain Got Talent and X-Factor UK.  One of the auditions that I have seen many many times is that of Susan Boyle, in the year 2009.  When I saw Susan responding to Simon Cowell before the start of the audition itself, I felt that Susan is different.   Only after few years I got to know that she is a high functioning autistic person.  Susan has spent years believing she suffered slight brain damage at birth.  Only around the age of 50, she was diagnosed with Asperger Syndrome, a form of autism.  

Susan participated in Britain Got Talent in 2009, when she was 47 years old.  She won the second place in that competition.  From an unknown person in 2009, Susan went on to release 8 albums in 11 years and continues to perform, tour and appear on popular TV shows around the world.  

A little bit about Aspergers Syndrome:  Aspergers Syndrome is identified as one form of the Autism Spectrum Disorder diagnosis (ASD). Here are the symptoms of Asperger’s syndrome.

- Obsessing over a single interest

- Craving repetition and routine

- Missing social cause cues in play and conversation

- Not understanding abstract thinking

- Trouble with pretend play

There would be many among us who might not have been diagnosed, but having Autism / Aspergers syndrome.  They must be facing difficulties from others because of differences in their behaviour.  

Hope better awareness among people would lead to acceptance, leading to an inclusive world.

Myths around Causes of Autism [Autism Acceptance Campaign 2021 - Day 8]

It is 8th day today of my Autism Acceptance campaign.  There are lot of misconceptions about causes of autism.  Today I will touch upon few myths associated with causes of autism.   Myths crop up when something is not well understood.  Autism is still not well understood.  There are many theories float around causes of autism.

In the 1940s and 50s there was an assumption that autism was caused by emotionally distant to ‘cold’ parents.  When Leo Kanner first identified autism in 1943, he noted the lack of warmth among the parents of autistic children.  This led to naming the mothers as ‘refrigerator mothers’.  Don’t know why mothers alone were qualified with ‘refrigerator’.  Possibly this might be the first myth around autism.

In 1998, Andrew Wakefield, a British gastroenterologist, and colleagues published a paper that described 8 children whose first symptoms of autism appeared within one month after receiving MMR vaccine.  From these observations Wakefield postulated MMR vaccine caused intestinal inflammation that led to translocation of usually non-permeable peptides to the bloodstream and, subsequently, to the brain, where they affected development.  He connected this to autism.  Claims of a connection between the MMR vaccine and autism have been extensively investigated.  None of these studies could establish any connection.  This also turned out to be a myth around causes of autism.

There was a belief that “ONLY environmental factors are responsible for autism”.  Extensive studies were conducted to understand this.  The largest study of its kind, involving more than 2 million people across five countries, finds that environmental causes are responsible for just 20% of the risk.  The myth “ONLY environmental factors are responsible for autism” also got bust. 

Fourth major myth on causes of autism was ‘Maternal Factors’.  Maternal factors included mother’s weight, mode or timing of delivery, or nutrient intake during pregnancy etc.  Scientific studies proved this also wrong.  So the fourth myth also got bust.

Dr. Rajith Kumar, a Kerala teacher who thinks women who wear jeans give birth to autistic children.  This disgusting myth was being propagated through 100s of stage and media talks by him.  He started spreading this myth just 3 to 4 years back.  It is unfortunate to see that this person got celebrity status and have huge fan following, may be because of many such senseless actions. 

As one understands better about autism, the walk towards Acceptance becomes shorter and easier.  The objective of this post is to bring out some myths about causes of autism.  Next we will look at some of the theories / facts on causes of autism.

Autism, A Processing Error? [Autism Acceptance Campaign 2021 - Day 7]

It is 7th day today of my Autism Acceptance campaign.  As indicated earlier, the first step in acceptance is awareness.  Autism is complex to understand.  It is a spectrum disorder and thus each autistic person is unique.  There would be some common traits in behaviour, interactions etc., still each person is different and unique.  For common people to understand this aspect, especially “spectrum disorder” is not easy.  Hence taking the analogy shown in the poster.

Autism .. It’s not a processing error.. It’s a different Operating System..

It is a very good analogy to understand Autism better.  Majority of us are comfortable using Windows Operating systems, and will find it difficult to use a different operating system such as Mac OS or Linux.  In Linux too there are many flavours / variants.  Redhat, Ubuntu, Fedora, Debian etc. are some of the variants of Linux operating system.  All these have the same basic concepts manifested differently, as in a spectrum.  The common traits of Autism such as poor social communication; repetitive, odd or stereotypic behaviours; prefer to play alone; poor eye contact etc. are manifested differently with different degree of intensity in different autistic individuals.  

Processing error happens for neurotypical (the so called ‘normal’) as well as for autistic persons. Then don’t consider Autism itself as a processing error.  

Take away here is, Autism is not manifestation of any mistake or error, but it is just being different, because of neurodevelopment disorder.  Let us try to understand them by observing them, and try to communicate with them the way they understand the world, and lead to a better acceptance and inclusion.

I have been doing music therapy for autistic persons for past few years.  The way each person perceives, understands and responds is very different.  I have to communicate differently with each person.  For the same action, command in different operating systems are different, and I have to figure out and discover the appropriate command for communicating with each person.  This is very different from dealing with neurotypical (the so called ‘normal’) persons.  

Let us try to learn more operating systems to be comfortable in this inclusive world!

Transformation of Parent's State of Mind [Autism Acceptance Campaign 2021 - Day 6]

Today it is 6th day of my Autism Acceptance campaign and we will look at different stages the families go through.. 

First many questions go through parents’ minds.  “Why us?”..  “What wrong we have done?” “Why God is punishing us?” etc. etc. The community around including extended family tries to find fault with parents. It takes time for parents to come out of this stage of “Why Us”?  Strong support by family and community around only can reduce the duration of this phase.  Stronger parent comes out of this stage first.  When the mindset of parents and other family members is “Why us”, they become blind, and lose the focus on the child’s development and growth.  Precious time is lost, leading to delays in getting the right interventions.  Because of neuroplasticity property of the brain, as the time progresses, the ability of brain to change tapers off.  It is very essential for parents and families to come out of “Why us” stage at the earliest. 

Once the parents and family members come out of the “Why us” mindset, the next question is “What next?”.  Precious time is lost, and parents start running around and unable to decide what to do next.  This is when parents approach doctors, therapists, psychologists etc. in a random manner.. Also many alternate medicines / therapies are tried out, mostly in a haphazard manner.  Many go to astrologers and religious persons too.  Objective is to do whatever that can bring the child back to “Normal”.  

Generally It takes many years for most parents and families to reach the “Acceptance” state.  Once they reach this stage, the child starts blooming.  The child starts getting unconditional love and support from family.  Parents keep thinking about identifying the best in the child and nurturing that.  The unconditional love towards the child starts making all the difference, leading to the child start seeing happiness and joy.   I had conversions with many parents, where they want to know what all we did for our daughter.  Majority of the parents starts the conversation with “my child has mild problem”.  Recently a 24 year old autistic person’s mother was telling me that her son has only 1% autism.  Another parent of a 29 year old, was refusing to accept that her son has autism.  Later I came to know that the issue is because of social compulsions.  I consider these as symptoms of lack of acceptance.  ‘Family with an autistic child’ is still ‘untouchable’  / ‘taboo’ in our society.  

As the parents grow and time progresses, the next big question in the minds of parents is “What after us”?  The autism fraternity, parents groups and NGOs are working hard to find solutions to this question.  There are businessmen too who tries to exploit such conditions.   Quite a few autism villages are coming up in the country as solution to this worrying question.

Based on my learnings, my request to parents is to “Accept your child as it is”, “Give unconditional love”, “Identify what the child is best at”, “Pursue what the child is best at”, “Work with other parents to find solutions for the child’s future”.. 

Lighting up in Blue [Autism Acceptance Campaign 2021 - Day 5]

Spreading awareness is the first step towards the goal “Acceptance”.  Parent bodies, NGOs and some of the government establishments do their bit to spread awareness on autism.  One of the symbolic acts being done is to light up iconic landmarks across the world in blue on 2nd April, the Autism Awareness Day.  

Today on 5th day of Autism Acceptance campaign, I thought of bringing out this lighting of landmarks in our country as well as in the world.  Many participating landmarks show their support for the initiative by keeping the lights on throughout the month of April.

Sad to see that, even these efforts don’t result in spreading of awareness.  People look at the beauty of the landmarks in ‘blue’ and say “Wow” and for most it stops there.  Trying to touch the lives of few autistic people and contributing a bit to make this world an inclusive one hardly happen.  

Struggles of Autistic people and families [Autism Acceptance Campaign 2021 - Day 4]

Today on 4th day of Autism Awareness campaign, I am highlighting some issues that autistic people and families continue to face.  

They get socially isolated. 

They are being judged as ‘strange’.

They hear disapproving noises.

They are asked to leave from public spaces.

They have lost friends!

This happens throughout the world.  But, the degree and intensity varies from place to place depending on how aware people are and how much people accept differently born ones.  The numbers shown in the poster are from a study conducted in the west.  We ourselves have faced many of these situations.   

Acceptance by the society is the only way to address these issues.  Let us hope that things will start changing… 

What families with an autistic child generally discuss? [Autism Acceptance Campaign 2021 - Day 3]

 

Today, on 3rd day of Autism Acceptance campaign, I am bringing out another lesser known aspect in families having an autistic child.  The poster speaks for itself. 

Awareness vs Acceptance [Autism Acceptance Campaign 2021 - Day 2

 

“I wish to live in a world where acceptance is not just the goal, but the reality. I want to live in a world where someone talking in the deficit model of awareness is regarded as uncomfortably out of touch with how things should be. This is my world too, and I want it to be filled with people who know that I am autistic and fantastic, not that I “have autism” and that is tragic. In my ideal world, flapping will be just as acceptable as smiling, earplugs will be a normal sight, AAC devices (Augmentative and Alternative Communication devices) will be common and everyone will know how  to converse with AAC users. In that world, neuro-diversity will be just another way  that people are unique, and everyone will agree that diversity is part of what makes the world so beautiful”.

This is from a blog post of Kassiane S, an autistic rights activist, who herself is autistic. Kassiane was improperly diagnosed before discovering the autism spectrum at the age of 18.  The words come from the heart.  That’s what we want to achieve to make the world so beautiful.

All along, the month of April is being celebrated as World Autism Awareness day.  United Nations has declared April 2021 as the month of Autism Acceptance.  Yes, awareness is the first step towards acceptance.  Why is it critical now to have this shift?  In United States of America, prevalence of Autism has risen from 1 in 125 children in 2010 to 1 in 54 in 2020.  The prevalence could be more or less similar in our country too, may be with few percentage difference here and there.  

People with differences are born different.  Are they not equal citizens of this world? The way the world evolved, and the way the majority in this world look at people who are ‘different’ is sad.  Come on, let us accept them as part of our society. Not just lip service, but be part of the movement. 

It is a fact that, unless there is someone affected in the family, “why should I” attitude prevails.  First be AWARE of the ‘difference’ and then ACCEPT it as part of society and be part of the process that enables ‘inclusion’.  

Awareness is easy, but acceptance requires hard work.  

Acceptance and awareness comes from vastly different mindsets.  

Those who are aware “Tolerate”,  but those who accept “Embrace”.

Becoming awareness is more or less one time thing.  But acceptance is a continuous process.

Awareness and acceptance can become reality, only when everyone interact with the ‘different’ ones and understand how they react to situations and how they lead their life.  In spite of knowing about opportunities, not many are willing to get to know about the ‘different’ ones.  That’s the sad state of affairs in our world.  

Humble request.. We vociferously discuss ‘political differences’ and ‘religious differences’.. We don’t even miss an opportunity to judge / accuse even friends who think different politically and do different religious practices.  Why don’t we find some time to think about people who are born different and struggle to live in this world, make use of opportunities to interact with them and accept them as part of this beautiful, diverse and inclusive world.  

[Most of these quotes are taken from Kassiane’s post].