MY JOURNEY WITH AUTISM

TRIVENI GOSWAMI VERNAL
Autism Advocate and Special Educator

My journey with Autism began in 2014 when my son, Kabir, was diagnosed with PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified), at 2 and a half years. He had shown signs of regression in speech and social skills. All the words he had, slowly disappeared, and he was reduced to a state of babbling.

I have a background in Clinical Psychology and I think that helped me initially, especially in looking for resources, and being able to create an understanding of how the brain was wired differently in Autism. But Regressive Autism was something that completely baffled me. I pored over pages and pages on speech and language acquisition, speech therapy interventions but couldn’t come up with anything concrete on how children who lose speech through regression, acquire it again, or how long it takes (if ever).

What followed were many sleepless nights, that kept me awake…trying to understand how we had come to this point, how did we miss the red flags—disappearing words, losing eye contact, not responding to his name etc. But more importantly, what would the next course of action be. I reached out to a lot of people—friends, extended family members, individuals I had worked with and somehow, the process to find ways to work with him, just snowballed from there. It was like a ripple effect. The more I spoke about it, the more I interacted and engaged with people, and the more opportunities began to open up, for working with him.

Soon after his diagnosis, I did a three month in-person Parent and Child Training Program (PCTP) at Action for Autism, New Delhi. That was literally a game-changer of sorts, and it shifted the focus within me—from being an individual who felt ‘victimized’, by the circumstances to someone who felt ‘empowered’, learning strategies and new ways of engaging with him.

Right after the training at AFA, I created a page, “The Autism Niche” (www.facebook.com/theautismniche/) to write about and disseminate information on educators, parents and therapists who have been associated with the field of Disability, and more particularly, Autism. I have, at various points in time, carried out series of interviews with Speech Language Pathologists, Montessori teachers, Dance therapists, Special Educators and last but not the least, Parents of children on the Autism Spectrum. The page has been my way of connecting with other parents and professionals, and is also an endeavour to give back to the community.

Over the years, I have tried to keep myself abreast with new ways of working with him and I have undergone several trainings for the same.

*In 2018 I completed my B.Ed. in Special Education, with a specialization in Intellectual Disabilities (under RCI).

*Then I did the Dsylexia Teacher Training Certification (with Afshan Jabeen from Ripples Centre for Enhanced Learning, Hyderabad, in 2019).

*In the post-Covid world, several courses are now available online, for us. I took that opportunity and, I did a couple of courses online with Seema Ganjoo (an Autism Interventionist from Mumbai) on Executive Functioning and Perceptual Processing and Functional Language and Communication.

*I then did a Diploma in Art Therapy (more on the lines of Art as Psychotherapy) from an organization in Bangalore, a couple of certifications in Brain Gym and a self-paced course on Gestalt Language Processing from http://www.meaningfulspeech.com .

*And a couple of months ago, I did the Avaz Certified Educator Course.

So, I think its very important for one to be open to doing and learning new ways of working with our children.

Stumbling upon Gestalt Language Processing, last year, was truly transformative in the way I began to look at communication via phrases. Nowadays, I meticulously write down every phrase Kabir utters, and I often find that he uses the meaning of that phrase in the correct context.

I have been associated with Nayi Disha (a pan India resource centre on Developmental Disabilities) for close to 7 years now, as a parent advocate/mentor and I have also begun volunteering at Abhyasana (a centre working with children on the Autism Spectrum, in Hyderabad), since 2022.

Kabir has now blossomed into a child who is inquisitive, loves reading books and listening to various genres of music, enjoys creating art and has quite a vast vocabulary, although he is primarily non-speaking. He is able to communicate, and often does so, through echolalic phrases he has picked up from books/ music he listens to or even programs he watches.

Visual Art has been a transformative tool for Kabir. He has a sensory need for sticky surfaces and that’s how I got him to try finger painting. Introducing various forms of Art opened up new doors for him—it was not only a vessel to learn multiple concepts like colours, shapes and textures but also a means by which he could express his thoughts and emotions. He truly enjoys the process of creating art and is greatly inspired by Nature.
Kabir’s explorations in art have also led to several new connections for me. I began my association with Special Saathi, after Kabir was made a Creative Associate. I will be contributing regular pieces to the blog on Special Saathi, from this month.

I have been juggling various hats, professionally, since Kabir’s diagnosis. Initially I decided to take a sabbatical from work with a non-governmental organization, that I was working with. I then started my own brand, “Nijora” (www.facebook.com/nijoracrafts/ and on Instagram @nijoracrafts). I handcraft jewellery and make small batch skincare. I also work as an Independent Researcher and I try to work on subjects that are close to my heart—Northeast India Studies, Disability Studies, Gender, Autism, Caregiver Burden and Art. I have managed to publish articles on Disability Rights, Caregiver Burden and Caregiver Mental Health and Covid (over the past six years) in a few International Journals and co-authored a chapter in a book on Ecofeminism, last year.

While I agree, multi-tasking is not easy, but I truly believe that it is absolutely essential, that we all develop identities that are much more than just being an Autism parent. We all have a lot more potential within us, and we are stronger than we believe and we can be so much more, in life. It is also very important, that all women have financial independence and that we actively work towards realizing that.

For me, the journey of being an Autism parent has been a life changing experience. There is so much of me, today, that has been moulded by Kabir’s lived experience with Autism. Having a child on the Autism Spectrum has its fair share of challenges—innumerable ups and downs, frustration, anger, being driven to despair with many a sleepless night. But it also teaches one to slow down, celebrate even the smallest of milestones and accept the individuality of the child.

One has to dismantle internal frameworks and expectations, that one may have carefully built over the years.

Life with a child on the Autism Spectrum is definitely not a bed of roses but if we allow ourselves to step back and be mindful, from time to time, Autism can open up a new world for us!
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Author Triveni Goswami Vernal

Triveni Goswami Vernal is an Autism advocate, registered Special Educator (CRR A64010) and an Independent Researcher. Her areas of interest include Autism, Disability Rights, Gender, Art and Northeast studies. She is a mum to an 11 year old on the Autism Spectrum.

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Creative representation for Triveni’s changemakersaathi story is done by her son Kabir Vernal.