Changemakersaathi माँ: Akila Vaidyanathan
Akila believes that every life has a special purpose and once one is aligned with that purpose, nothing is impossible. She discovered her life’s purpose when her son Nishant was diagnosed with Autism and Apraxia and she quit her successful international career in the software industry and trained herself as an educator and psychologist to help her son and those like him.
Akila is a thought leader in the area of Disability and Inclusion. She has seeded and anchored unique concepts and programs in this area like Adventure camps, Art festivals , Congress for PWD, SMILE -Sensory motor Integration in the Learning environment – a program for preschools, Lifeskills based Literacy and digital literacy courses . She has been a catalyst in creating a strong vibrant community of PWD [persons with disabilities] and their families and has been instrumental in creating a matrix of support in for them in the larger community.
Akila along with a few parents founded the Autism Society of India [ASI] in 2006, an NGO with a pan India focus, based out of Bangalore, which works on advocacy and awareness for the rights and services for those affected by Autism. She is currently Vice President, South and member of the Executive Council for ASI.
Akila is the Founder – Director of The Amaze Charitable Trust, an NGO based out of Coimbatore founded in 2012. Amaze runs a skill training center for persons with Autism both online ad offline courses are available. The USP of these programs are that they are person centered and process focussed as well as the content leverages on abilities and interests of the students.
Akila is a facilitator for “Human Process work” with Aastha Foundation for human learning and is a member of their Governing Council. She also initiated Antara – ‘The Space Within’ in 2016. Antara offers group programs that enable parent and caregiver wellbeing.
Akila’s Journey so far
Here’s Akila’s interview (a conversation with Shilpi Mayank Awasthi Founder SpecialSaathi), and her story in her own words.
We welcomed Nishant into our lives in November 1995. He is 27 years old now, so it is a long journey. In the beginning, he was like any other child. He was and continues to be the apple of our eyes, his milestones like walking , talking , smiling, mischief were on time. It was when he was around 2 years old we noticed that he was not communicating that much and had slightly withdrawn socially. He also had developed sensory issues.
However awareness about Autism was poor in those times and the elders in the family and even the doctors felt it was a temporary phase. However his regression continued and by the time he was 3 years old we knew something was amiss and took him to a neurologist, who diagnosed him with Autism.
We immediately started giving him regular speech therapy and Occupational therapy as recommended by the doctors, I had quit my job a few months earlier as I had an intuition about his issues and wanted to closely monitor him and trained myself in Special education and he has the good fortune of attending a very good Montessori school in Bangalore.
Nishant was active and seemed very intelligent but his speech was inconsistent and slowly he was using lesser words inspite of early intervention. I could also see the happy child slowly disappear and his frustrations increase due to the difficulty with communication. So I started researching about this and hit upon PECS methodology which was widely used in the west but not very well known or received in India. I implemented this by reading the manual and in 6 weeks he could bring me cards of his needs and requests. I saw his irritation come down drastically. Till this point I had diligently supported his programs as a co therapist and coregulator for him but the success with enabling his communication gave me the confidence to take his progress in my own hands.
He enjoyed learning and was very visual and very good at spellings. His motor planning difficulties made it difficult for him to write and his attention issues meant he could not read long sentences – so I began reading to him and writing for him. We started using written choices and a letter chart to spell and he enjoyed academic content in the areas of science , geography, english and maths. He could complete mainstream schooling till Grade 5 .
We also introduced him to the computer – he had difficulty typing . but eventually through a method called RPM and using a touch screen computer and some software apps at the age of 13 he learnt to type independently . From grade 6 he was in the special section and later went to a special school for 3 years but I always worked on his language , communication , knowledge base in the areas of his interest – which had expanded to visual arts , cooking and baking , housekeeping etc.
In 2010 we introduced him to Avaz app which literally gave him a voice for communication. So currently he uses Avaz , Text to speech on another app called Clicker and Letter Chart .
As parents we all talk and think about the time “there was no autism” and then about “after the diagnosis”. For me the distinctions between the two time periods is a blur for I loved my son unconditionally before he was diagnosed and love him unconditionally till today.
I love him not only because he has the twinkle in his eyes, a smile that can take away a million hearts. He has grown from the absolutely adorable chubby “Glaxo” baby to a devilishly handsome hunk towering over me at 6.2 . The best part is he loves me back – unconditionally – never judges me , tells me he loves me every day in a zillion ways ,
I had no issues accepting my child as he was or with the term or the fact that he had a disability. I had no issues accepting the parts of him that are different from the “norm”– his sensory differences which include his need to hum or play music all the time, his need to keep walking or moving if not engaged, his obsession with food and smells , his differences in biorhythms which are more tuned to nature and moon cycles than people. His challenges with communicating through speech, his different ways of socializing , his meltdowns and outbursts and even his aggression is acceptable to me as an expression of his extreme frustration. I never wanted to change his “core”.
A few years ago when I asked Nishant to type his thoughts for “Autism Awareness Day” he typed “Why only today ? – I have Autism everyday”. This motivates me to celebrate and accept him and those like him every day for who they really are and work towards creating acceptance in the systems that they are a part of and create systems that are accepting of diversity.
One person who accepts him as he is 100 % is his sister Nivriti. As a sibling of a person who has autism and being 5 years younger than my son, she had a life different from all of ours, she has not known a time without autism and that makes her a very different person. While acceptance, sensitivity, empathy, responsibility and sacrifice comes naturally to her – so does a world view of being unjustly stigmatised and marginalised which makes her a crusader for those on the fringes.
We are also blessed that our close circle of family and friends also accepted Nishant along with his diversity quite easily – so he has a large circle of persons who love him to the core and care for him and support him. Acceptance from the secondary circle is happening – in the sense that those outside the close family are accepting of him – these are people who come in to work at our home on a daily basis, his friends and facilitators @ Amaze, his dentist, doctor , familiar places that we visit like restaurants and shops etc. They know he communicates differently, respect his preferences , “adjust” to his pace and needs and even accept times when he is not able to cope and “does not cooperate” or “has a breakdown /meltdown”.
Building acceptance is an ongoing process – for example if there is a new person in this circle , they are initially very vary – sometimes to the point of being scared and they literally “avoid” him. As he is not very social in terms of greetings or a conversation – interactions that are functional and routine – like saying “hi” while walking in the community or on a zoom call or “bye” to the house hold help or driver –are all that happen initially. Then as they observe him more, interacting with us, going about his daily tasks and routine independently. For example – he will put off the fan when my mom has to light the lamp, bring water to you if you are coughing, or a tissue if you are tearing up, suggest to add garlic or ginger to a dish you are cooking etc.
Then they will see him requesting things through his AAC – which may include , food , instructions , actions, music . When they see him communicate with us [his parents ]through typing , create one of his beautiful art works , pull out the YouTube recipes of the dish someone just mentioned in the passing , cycle on the roads for a few kilometers – then they are amazed !! It takes some time and many interactions for them to get to know there is a “real person in there “ who can actually think and feel .
We call ourselves the “Hippies of Autism“, as we have travelled wide and far and tried out so many things in search of a path for our son and a better quality of life and living for him. Initially to was all the structured approaches, speech therapy, Occupational therapy, PECS, RPM, Structured teaching, Perception enhancement, Feuerstein enrichment etc etc. We also focused on making him use Assistive technology and AAC extensively and I trained myself in different aspects therein. It was our “problem solving” phase where research and solutions played a significant part.
We tried Ayurvedic massage treatments , biomedical treatments , auditory integration therapy Grandmother’s remedies and homeopathy for his colds and coughs and body pain and stomach issues. Here is where we tried to find “cures” not for his Autism but for anything that made him uncomfortable in his body – ranging from sensory issues to biological issues. We felt that this was important for him to be able to function optimally in any given situation.
Next we moved on to our exploration and experimentation phase here have explored Arts based therapies – Visual arts, Music, Movement, athletics and sports, Swimming, Cycling, trekking, travel and Adventure. Cooking and baking have also been part of this exploration. This part has been really rewarding and joyful – he discovered his passion for cycling , hiking and trekking , travel and adventure , his keen interest in Art – both painting and Digital art which has led to a vocation in that area , his passion for music which keeps him company day long where ever he is.
It also led to us being the initiators of Adventure camps for persons with special needs, partner for the Velvi Art for Autism festival and Congress for PWD. These interactions have led to the creation of a strong informal community of parents and persons with disability, their well wishers and professionals in this area. This synergy has snowballed into a network of people across the nation who are interconnected , interdependent and help our children thrive in the mainstream community as valued stakeholders.
We lived in Bangalore and then for 3 years in the USA but then moved to Coimbatore to find long terms solutions for him. We were able to train him in various skills and create a sheltered “workspace” via Amaze which is his secondary system along with his facilitators and friends. We were also able to support the creation of lifespan solutions including inclusive living with seniors [Covaicare model – created 6 years ago ] which is supporting close to 25 families in Annur [near Coimbatore ] and Mysore. This initiative also has inspired many more similar models across the nation.
As a family we have both quit out jobs at different stages , taken a counselling and worked on ourselves to be present for our children as much as they need us and in whichever form they need us – caregiver, cheerleader or just co traveller. This journey has been amazing and confounding all at once and we have learnt to celebrate every milestone, take in the scenery on the way and enjoy the adventures of exploring the unknown territories .
Milestone and cherished moments
I am editing this article in the hospital as my husband is here for the past 10 days for a serious health condition. It was not something we expected to happen, but the reality is that we have been preparing our whole life for the moment when Nishant, our son with autism will have to be without both of us. So this is kind of like a real time test to see how he copes and behaves.
To our pleasant surprise he has been very regulated and helpful at home. He is on a vacation so he is only partially engaged at the center where he goes in few days a week for some fitness and group activites. Rest of the time he is helping my mom with household chores, engaging himself and taking care of himself. My mother is nearly 80 years old and Nishant is 27, she is 5 foot 2 and he towers at 6 feet 2 inches, but they gel beautifully together. She also cares for my dad 86, who has Parkinsons and need full support for his daily care.
Nishant helps our household with the cooking, laundry, organisation of the home etc. He communicates his needs clearly to everyone around. He regulates himself when he is anxious. One day he could not find his charger and was getting anxious and agitated – so he communicated to my mother to go into her room and he closed himself in his room and cried a bit and came out calmerand then searched for his charger. We are so proud of him for not getting into an outburst, as a few years earlier he could hurt himself or others when anxious. This is a milestone moment for us .
Challenges in the journey ?
Nishant chose to answer this question also …in his words [which he typed ]
“For me the major challenge was that I was very clear in my mind and could understand everything but could not express – I could not control my body or mind easily also due to my sensory issues. My mother worked hard on giving me avenues to communicate through many ways this has helped me a lot to feel more understood and confident to interact with the world. Sensory issues are better now many therapies helped me like ayurvedic massages, auditory training, sensory integration therapy, perception enrichment program, horse riding, swimming, walking, cycling. These have reduced my issues especially visual and auditory issues are not that disturbing now a days. I still have skin, taste and smell sensitivities that overwhelm me.”
Another challenge has been to find acceptance his “meltdowns” and “aggression” except from a close circle of people . I accept his meltdowns as a part of him – the only part I keep working on is the mode and timing of expression of that frustration – to express it before it becomes explosive and if it does tip over to regulate by taking quiet time off rather than hurt oneself and others. Over time he has become more and more regulated and hopefully with stay that way.
If one is in his shoes – with hypersensitivity , hyper awareness of self and the environment, hyper vigilant and yet not able to communicate in detail to all, not able to regulate one’s body or the environment to suit one’s needs, his frustration is understandable isn’t it ? At the same time it is also understandable that no one would willingly want to engage with a person who is aggressive. So there is a bit of a deadlock there which needs to be unraveled.
From my side as a parent , what has been really difficult for me is has been to decide at each point – How much do I just “let him be” and how much do I “train him” to survive in the real world? How do I really help him express himself to the fullest? How do I find spaces outside the home that are accepting of him? What will true independence mean for him? How do I create support systems that will have the same values as us in the future when perhaps family is not around? Who is going to be his inner circle of care and love besides us his family? In the absence of working models in the Indian context, my life’s work and mission has been to find answers to these questions. It has driven whatever I did and do and will do in the future – with him, with myself, the family, the systems around us and the universe.
Nishant’s Achievements in this journey
Nishant is an intern at The AMAZE’s Charitable Trust, Coimbatore. He does Art and Digital Art and Cooking, Housekeeping and Fitness activities. He loves long distance Cycling and Trekking in the mountains and Listening to Music of all genres. He has won many State and National Level Bronze medals for Special Olympics Bharat, Cycling .
His Art work was chosen for eCAPA online exhibitions in 2020 and 2022 curated by The Art Sanctuary. In 2022 his Digital Art work was selected to be exhibited at the Stir Gallery, New Delhi. His Art work has also been featured in calendars and he won several logo and Poster competitions. Recently he was commissioned to create a few art works for the Volvo 2023 calendar .
His works are vibrant and reflect his deep connection with nature. He enjoys the process of creating the art work – it is a sensory experience for him. He likes to work with poster colours and oil pastels. He also works on Ms Paint to create Graphics. He has attended the Velvi Art for Autism festivals – which is where he discovered his interest in Art. He also attended the Digital Art courses curated by Amaze trust .
Nishant can type and communicate his thoughts and feeling however he is content to interact with his close circle through his communication. When asked questions, his replies are always interesting and show deep reflection in his thought process. He is a person who lives in the moment and takes each day at it comes. He does not want to comment on other’s behaviours or “Change the world”, so earlier when I would ask him to type his messages – he was not too interested. However he would always answer questions if asked.
During Covid , he agreed to be a resource person for NISH, Trivandrum for their AT course and he would answer the student’s questions. He readily agreed to answer questions for the Talking finger’s book which he had the opportunity to co author. He feels happy when I read out the feedback for the book and recently in the 4rth Indian Congress for PWD we did a small section releasing the book and he was very happy with the applause and appreciation and answered questions from the audience patiently . So perhaps he is understanding the importance of sharing his perspective with others and will share more, write more.
Nishant is very affectionate by nature and is happy go lucky by character …he dreams of a world where everyone is happy can do what they like to do. His dream is to travel a lot and write about his travels.
I have written and shared this story of our journey with Autism many times and each time I do it there is a newer layer perspective that comes with it. Today when I look back at the past 24-25 years it seems to me that this a story of deep love and great courage as a family. It is the love that we shared that gave us the courage to dive deep into the space of Autism, to go beyond just what it mean to us and our child but the entire community and to risk our whole financial stability and mental wellbeing to explore paths that were not treaded upon. It has been worth the risk !!
“Tempered with love”- journey of Akila Vaidyanathan
Author Akila Vaidyanathan
Founder and director of Amaze Charitable Trust, an Autism advocate and a proud mother of Nishant Sriram.
Co author- [Challenges in the journey]- Nishant Sriram