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].

Navratri Navrang

Navratri days were always colourful.  It was very special festival for us in family.  During childhood, we use to have special decorations and pujas every day at home with tasty Naivedyams / Prasads.  Over the period of time all the decorations got reduced, puja and Naivedyams remained, and more music got added.  We use to sing bhajans every day evening, which was led by my mother.   These days, the music got confined only to the Vijayadasami day, after the Saraswati puja. 

This year it was very different.  Lockdown days dampened the spirits of Navratri in general.  Just a day before start of Navratri, Pratibha’s Sitar guru Smt Aparna Deodhar suggested that why not do a video series in which Pratibha and the guru perform together one raag a day.  To include only the compositions and not improvisations.  I got excited with the suggestion and did not realise the challenges ahead.  We finalised the raags for each day.   Teacher also suggested that let Pratibha wear Saree during the performance.  These were sufficient for Pratibha to get excited, playing along with her guru, that too wearing saree. She loves wearing saree and these days not many opportunities for wearing saree.  Wow! We all got excited.  Awesome way to bring colours of Navratri back.  So, it is going to be Navratri Navrang this year.

We all got into preparation to make the Navrang a reality.  Some of the raags Pratibha learnt more than 3 years back, and she has not practiced them at all.  We have setup a process.  First make Pratibha revise the compositions in the chosen raag of the day.  Once we get comfort with her playing, do the video shooting, of course Pratibha wearing saree.  Once the shooting is over, edit it to remove all unnecessary takes and send the video to the teacher.  Teacher listens to it and plays the same what Pratibha has played and sends her video to us.   During that time, I get into creating a cover design for the video.  Then sync both the videos, adjust the volume levels, place the videos side by side etc. to create the final one.  Send the final video to the teacher, who posts it on the Facebook, and we share it on our Facebook timelines also to a few friends and groups in WhatsApp.  This was the process we followed.  I was spending a minimum of 6 hours a day for all my tasks.  Most of the time was spent in two tasks, (1) revising the compositions that Pratibha has to play & then making Pratibha practice and (2) video editing.

After watching for couple of days’ videos, one of my friend commented that playing along Pratibha is a bigger challenge for the guru, as Pratibha has problems with rhythm and she misses beats once in a while and the tempo varies while playing, though less often. Matching that is not an easy task!!  Such amazing support from a Guru, matching Pratibha’s ‘playing’ (with rough edges) is something which gave real “colour” to this Navrang series.  I am sure, this is because of the bond that Pratibha and her guru share.

My wife Asha was giving all the support and encouragement.  The biggest task for Asha was selecting sarees for each day, making Pratibha wear saree and all the associated accessories, and reviewing the videos in progress.  Pratibha’s excitement was for two reasons: (1) Playing along with her guru (in video), and (2) opportunity to wear saree.  After couple of days we realised about the colours associated with each day of Navratri, and decided to make Pratibha wear saree having the colour of the day.

It was a thoroughly enjoyable Navratri for us, for me fully engaged in music and video creation.  The commitment by Pratibha's guru Smt Aparna Deodhar has to be appreciated, as she was there for any help all the time.  For me it was a laborious task, but I enjoyed thoroughly.  From us, myself, Asha and Pratibha, a big thank you to Aparnaji for making the suggestion for the video series and supporting it all through the nine days. 

The response we got for these videos from social media were very encouraging.   Here are the nine videos and at the end a link to the playlist, where all the videos can be viewed.

Day 1:  Raag Bairagi

Raag Bairagi is also known as 'Bairagi Bhairav'.  The equivalent ragam in Carnatic music is Revati.  The time associated with this raag is morning 6 AM to 9 AM.  This raag is supposed to evoke karuna rasa.  It is to be noted that many of the vedic verses and shlokas are chanted in this raag.   It is said that the steep fall from Madhyam to komal Rishabh adds to the poignancy of the raag Bairagi.

Day 2:  Raag Shivranjani

Shivranjani is a melodious raag and gathers strength from sadness.  This raag is very similar to raag Bhoopali with just one note different, i.e. komal Gandhar instead of shudh Gandhar.   Though the difference is very small, the mood the two raags create are very different.  Shivranjani is considered to be a raag borrowed from Carnatic music.  The time associated with this raag is midnight.  Bollywood has used this raag for many popular songs that reflects sad mood.  One example is "Jane kahan gaye wo din.." from the film Mera Naam Joker.. 

Day 3:  Raag Hamsadhwani

In Hindustani music style, raag Hansdhwani is considered to be borrowed into it from Carnatic music.  Time associated with Hamsadhwani raag is 2nd prahar of night.  Hamsadhwani is a bright and happy raag setting a vibrant context for a concert.

Day 4:  Raag Bhoopali

Raag Bhoopali, also called Bhoop, is a very popular raag.  The equivalent of this in Carnatic music is ragam Mohanam.  The time prescribed for this raag is again 6 pm to 9 pm, the first prahar of night.   Bhoopali is a tranquil soft melody that fills up a new life force in the atmosphere.   

Day 5:  Raag Yaman

This raag is considered to be one of the most fundamental raags in Hindistani tradition.  Kalyani is the equivalent ragam in Carnatic music.  The time associated with this raag is first prahar of night, i.e. 6 pm to 9 pm.  Yaman is full of grace and beauty, evoking a mood of devotion and dedication.  

Day 6:  Raag Malkauns

Malkauns is one of the oldest ragas of Indian classical music.  The equivalent raaga in Carnatic music is Hindolam.  The raag is said to have evolved when lord Shiva performed the Tandava dance.  The raag thus evokes a feeling of vigour or Veer rasa.  The time associated with this raag is 3rd prahar of the night, i.e. 12 midnight to 3 am.  

Day 7:  Raag Durga

This year, the seventh day of Navratri was considered as Durgashtami, hence we chose the raag Durga for this day.  The traditional emotion associated with raag Durga is boldness and determination.  It also signifies purity.  The time associated with this raag is 2nd prahar, viz. 9 pm to 12 midnight.  Suddha Saveri raag in Carnatic music is considered to be very close to Durga in terms of notes, but the way these ragas are rendered are quite different in both styles of music.  

Day 8:  Raag Bhimpalasi

Bhimpalasi is a very sweet and hauntingly pleasant melody.  This raag is supposed to depict the sringara rasa (romantic mood).  The time associated with this raag is 12 noon to 3 pm.  The Carnatic music equivalent of this raag is Karnataka Devagandhari.  Dhanashri ragam is also very close to Bhimpalasi. 

Day 9:  Raagsagar

Navratri Navrang was concluded with a raagsagar (raagamaalika), rendering multiple raags in one composition.  The five raags are Kalavati, Rageshri, Chandranandan, Malayamarutham and Bhairavi.  Kalavati and Bhairavi are very popular raags.   Raag Bhairavi is called queen of melodies, which is known as Sindhubhairavi in Carnatic music.  Though raag Bhairavi is an early morning raag, it is popularly used as a concluding piece in the concerts at any time.  We are also concluding Navratri Navrang with Bhairavi, but followed by a short jhala in Kalavati.

Here is link to a playlist of all the nine videos.

Navratri Navrang Playlist