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A space to share stories of our work using narrative practices with children, adults and families in the Indian context

Trying to be an ally to the Autistic community as a mental health professional

by Prathama Raghavan
(First published in www.medium.com
Here is the link to the original article published on August 14, 2018)
Description: Three children stand, looking curious, in front of a yellow wall. There is a white window, a bookshelf, and a blackboard with stick figures drawn on behind them. Credit: Upasana Agarwal.

My academic background gives me the title of a developmental psychologist. ‘Psychology comes from an orientation of let’s look inside people to see what’s wrong with them,’ says Vikki Reynolds, direct action activist, trainer and clinical supervisor.

Psychology has taught me some useful things, but it got this one very important thing wrong. This thing ignores all the social ideas of ‘normal’ in the therapy room. For example, the assumption that a man would, by default, be attracted only to women and vice versa, or that spoken language is the default way to communicate with another person.

We function in a patriarchal, ableist, neurotypical, casteist, classist, heteronormative society and these dominant social ideas of ‘normal’ are very much present in the therapy room. As therapists we are influenced by these ideas and we often end up reinforcing them through our practice, if we are not careful. As mental health and disability professionals, we have been unwittingly assigned the role of making people look the same (= ‘normal’) rather than acknowledging and celebrating differences.

As someone with a PhD consulting with children and young people experiencing disabilities, differences and difficulties in a variety of contexts, I am often perceived as the ‘expert’ in the room. This is an incredible power and an incredible responsibility, especially because it’s untrue. Thanks to my work, I know now that I am not the expert. And it was the children and young people I work with who are on the Autism Spectrum (which I will refer to as the Spectrum from now on) who taught me this lesson — as did the online Autistic community.

I try to explain through this piece how consulting with children and young people on the Autism Spectrum forced me to examine these ideas of ‘normal’ and taught me how to be an ally to the Autistic community. It is very much a work in progress.

Most of my work has been carried out in conjunction with people who share my identity of being non-autistic — parents, teachers, other professionals, non-autistic peers. I consult with people on the Spectrum to know and understand what would be most helpful to them in the social spaces they occupy. I have the responsibility to convey the knowledge that is given to me by the Autistic community and most importantly, credit the community with this knowledge.

Depending on the age of the child or young person I work with and their social contexts, this is the nature of the work that I do. I go to their school to introduce principles of inclusive education, neurodiversity and autistic experiences to teachers and their peers. Or I advocate with parents, special educators, speech and occupational therapists to teach non-speaking children on the Spectrum to read and either write or type as alternative ways to communicate.

Unfortunately, professionals and schools can spend months and years trying to teach non-speaking children on the Spectrum to speak without introducing them to alternative communication methods. From my interactions with non-speaking children on the Spectrum I learnt that many of them were interested in and enjoyed learning language. They had to learn to read and understand without any insistence on having to read out loud and be able to type/write to respond instead of speaking.

Introduction of typing to communicate and text to speech apps became part of what I advocated for. Apps like these allow for individuals to type text in a text box on the app and the app will convert the text into voice. I have had many fun conversations with young people on the Spectrum typing into speech bubbles on my iPad.

Through this process I learnt to name so-called ‘behaviour problems’ as resistance to and communication about an oppressive situation. For example, what may seem like a ‘tantrum’ in the supermarket or in the classroom could be labelled as a behaviour problem, whereas it is the child telling us that the circumstances (the lights, the sounds, the smells, the crowd, the unfamiliar space or something else) are overwhelming or oppressive.

Professionals have had the misconception for decades that all people on the Spectrum do not have empathy. Generalisations such as these are harmful. As an 18-year-old Aspie** young man consulting with me, once eloquently told me, ‘It’s not as if you (us, non-autistic folk) can empathise with the autistic experience, so maybe it is not a question of empathy?’ This man’s insight has started off many workshops I have done with teachers, therapists and parents. There is always a moment of silence as we let this simple, yet powerful, thought sink in. Everything is somewhat easier after.

There is another aspect of the experiences of people on the Spectrum that we as professionals are not adequately listening to. Atypical sensory processing is experiencing sensory information such as sounds, taste, light, touch in ways different from what is typically experienced. For example, sounds may be heard louder or softer, certain textures and tastes may feel stronger or lighter and therefore more or less comfortable.

Many ‘meltdowns’ and challenges autistic children experience come from sensory overloads. So many parents told me how painful Diwali — with its relentless firecrackers — is for their children. A simple aid such as a noise cancelling headset helped some children suffer less. One child began to request the headset when he went on the scooter with his parent to reduce the noise of traffic. This child would sleep with the headset next to his glasses in the night and on waking, promptly put both on.

Description: Two figures with their back to us are embracing each other lovingly. They are surrounded by circles of bright colours — shades of yellow and red. Credit: Alia Sinha

As I said above and cannot emphasise enough, these are things that I have learned only from listening to children and young people on the Spectrum, their speaking and non-speaking ways of communicating. I also learned them by reading what actually autistic people are writing online and offline.

At some point in my work with them, I realised that I didn’t have an understanding of what people on the Spectrum might be experiencing. I began looking for and following many self-advocates on Twitter and reading blogs and books of speaking and non-speaking self-advocates, which led me to a whole world of resources.

ASAN — Autistic Self-Advocacy Network and AWN — Autistic Women and Non-Binary Network — both online communities and resources by autistic people are good starting points. The sites Musings of an Aspie and Autistic Hoya, managed and written by Autistic individuals, are among my favourites. Through them I was introduced to a diverse, vibrant autistic community.

From them I learnt the basics of trying to be an ally: I learnt to call ‘Autism Awareness Month’ Autism Acceptance Month instead. I learned that ‘autistic person’ was preferred by most of the online community as opposed to ‘person with autism’.

I learned about Neurodiversity and the Neurodiversity Movement. Nick Walker, Autistic author, educator and speaker defines Neurodiversity as ‘the diversity of human brains and minds — the infinite variation in neurocognitive functioning within our species’ and the Neurodiversity movement as ‘a social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent.’ It helped me understand and articulate my understanding of Autism from a perspective of diversity rather than deficit and try to influence other professionals, teachers and parents into seeing this perspective.

C.L. Bridge, an autistic person, wrote a letter to a former therapist, which was published on the Autism Women & Non-Binary Network. In it, they say:

‘You can learn to respect stimming. You can learn to validate autistic people’s feelings, even if those feelings aren’t what you expect us to feel in a particular situation, and even if it takes us longer to get over a bad experience than it would take you. You can learn that no matter how odd you think our interests are, they aren’t yours to take away. You can learn to be kind even when you feel frustrated with the person in front of you. After all, isn’t that how you would like to be treated?’

We serve the Autistic community best by listening to and observing what people on the Spectrum are telling us. The work of an ally is as much internal as external. Actively deconstructing one’s biases, understanding one’s privileges and internalised ableism, reading and listening, being accountable and doing better every day is our job as mental health professionals and aspiring allies. I have the responsibility of being a true witness to the people who consult with me, to their agency (because there is always agency) and to be conscious of their marginalisation by society.

*Some individuals on the Autism Spectrum use spoken language and some others use other forms of communication mostly through typing. These alternative forms of communication are often referred to as Augmentative and Alternative Communication or AAC.

*Short for Asperger’s, known as one type of autism for the longest time. Recently the professional community abandoned sub-types in Autism and refers to all the experiences as Autism Spectrum. Aspie/Autie (short for Autistic) are self-identifying terms used by certain members of the Autistic community. Not everyone may be comfortable with their usage.

Prathama is a Disability and Mental Health Practitioner consulting with children, young people, families and schools for their well being and working towards nurturing safe spaces for all ways of being.

Narrative Practices and Mental Health for Children ft. Jehanzeb Baldiwala on The SOS Show with Suchita!

Ep.Log was made with a motto to make one’s commutes engaging and infotaining with podcasts!

One of the recent episodes on the #SOS Show with Suchita Bhhatia was on Narrative Practices and Mental Health for Children featuring Jehanzeb Baldiwala, Director Mental Health Services at Ummeed Child Development Center.

Ummeed is a non profit organisation that provides services for children experiencing developmental disabilities in India. Jehanzeb Baldiwala heads the Mental Health Team at Ummeed that works with young people experiencing various mental health issues ranging from anxiety, depression, schizophrenia, autism, ADHD and many more. In this episode Suchita is in conversation with Jehanzeb where she shares the various narrative practices they use to connect with the kids and make them self aware and independent. The parents and the Ummeed family form a big part of bringing out this change together.

Listen to  “The SOS Show with Suchita” and other podcasts by Ep.Log Media on www.eplog.media

Ep.21 Narrative Practices and Mental Health for Children ft. Jehanzeb Baldiwala,Director-Mental Health Services at Ummeed Child Development Center

Making Emotions Tangible – Mithila

About 3 years back, in order to understand and explore an estranged relationship I shared with my father, I started photographing him and life in my parent’s home. It was a very therapeutic process. Ever since I started using photography as therapy for myself.

At the same time I also started consulting a therapist as I had been feeling polarised emotions and experiencing internal conflict for a while. As I spoke to my therapist each time, I had these visuals in my head of how I felt. Alongside I started photographing my state of mind. I started translating those feelings/mental visuals in to images.

The intentionality was not conscious initially, but by translating my emotions and my state of mind in to an image let me externalize it and make it tangible. This objectification of my state of being gave me more clarity and allowed me to explore it further.

These images are in chronological order of my state of being, mostly captured between February 2017 and July 2018. For a very long time I did not look back at these images, but when I did, I was able to make meaning out of it.

Now photographing my state of being has become a part of me. I do it more intentionally and it really gives me clarity about when I feel a certain way and what may be causing it. Keeping it in a chronological order also lets me understand the timeline and the place that I may be at the time.

At one point I called this project, ‘Expedition Happiness’, but it also made me realize that I was looking for the kind of happiness that I used to feel a few years back. But I have come to understand that this journey has led me to change and grow and happiness looks different now.

Monthly Narrative Gathering – November 2019

Greetings from Ummeed!

Narrative Gathering-9NOV-Eng

Inviting people from our narrative community for our next monthly narrative gathering session – Exploring chnaging discourses through songs and poetry. Through some off-beat songs, poetry with reflective exercises, Anand hopes to facilitate some sharings and conversations about different discourses that are close to each one of us in the narrative tribe.

The facilitator for this sessions is Anand Kumtha. He is a parent to a young man with autism and works mainly with adults with special needs. He has been a part of street theatre group and writes poems and composes songs. He believes that poetry is like oxygen to the human soul.

Date: 09th November 2019

Time: 1:30 pm to 4:30 pm

Venue: Ummeed Child Development Center – Training Facility

Zoom is available for those who cannot come in person. They can login by clicking the link mentioned 

http://zoom.us/j/2973325579 

 

Request you to please call 022-62102000 or email training@ummeed.org to confirm your participation.

Monthly Narrative Gathering – October 2019

On the occasion of World Mental Health Awareness Month, we invite you to join us in reflecting on the many little things – skills, ideas, actions and hopes – that support our mental health and that of others around us.

Kindly refer to the flyer for more details! 

 

Bookish Diversity – 10th October 2019!

10th October is World Mental Health Day and we are excited to invite you to join us. To celebrate the day, we are hosting a conversation between a few of our favourite children’s book lovers. They will be sharing their thoughts on the representation of children with disabilities in children’s literature.

Deepa Balsavar, Children’s book writer and illustrator (The lonely king and queen & Nani’s walk in the park), Sangeeta Bhansali, Founder of Kahani Tree (A magical children’s bookstore), Amrita, Co-Founder of Apni Shala (works with children in schools to build their socio-emotional language), Lubaina Bandukwala,  Author and Curator of Peek-a-Book (children’s literature festival) and our very own Vibha Krishnamurthy,  Developmental Pediatrician & Founder, Ummeed child development center will be our guest speakers engaging in a conversation on

‘Bookish Diversity’.

 Date: 10th Oct’19

Time: 10:00 am to 12:00 pm

Venue:  Ummeed Training Facility, 6B – 6C Trust House, Near Global Hospital, Dr E Borges Road Parel, Mumbai 400012          

The event is open for everyone. Please refer to the flyer for further details. In case of any queries and for registration please call 022 6210 2000 or email training@ummeed.org

Looking forward to having you with us.

Bookish Diversity-WMHD 2019 Event.png

2 – Day Introductory Workshop on Narrative Ideas and Practices, October 2019

Ummeed’s Mental Health Team is conducting a two – day Introductory Workshop on Narrative Ideas and Practices in Mumbai on 17th and 18th October 2019.

For more details, kindly refer to the flyer. The workshop shall be facilitated in English.

Register soon!

Narrative Ideas WORKSHOP-OCT-2019

Library of Hope – Raviraj Shetty and Dr. Riddhi Mehta

A fun pop-up library in Lower Parel makes reading exciting and accessible for all.

Raviraj Shetty lives in Mumbai with his parents, sister and an amazing bunch of friends. He is an occupational therapist, trainer, supervisor and a manager at Ummeed Child Development Center, a non- profit organization which collaborates with children experiencing disabilities and their families. He believes in his heart that people are not the problem, but the problem is the problem. Curiosity, Hope and Magic are things that guide his life.

Riddhi is a Developmental Pediatrician at Ummeed Child Development Centre, Mumbai, a not for profit organization that supports children with various developmental difficulties. Along with doing developmental assessments for children, she also worked as a Research Assistant on an international project aimed at developing a tool for monitoring development of children 0-3 years in low and middle income countries (International Guide for Monitoring Child Development).

https://www.mid-day.com/articles/library-of-hope/21676079

 

 

Should I talk to my child about Autism? – Jill Sanghvi

Jill Sanghvi has been with Ummeed Child Development Center since 2009. She is currently a counselor and training manager at Ummeed. Jill holds a Masters Degree from Mumbai University and a Masters in Mental Health Counseling from Pace University, New York. Jill has been drawn towards narrative ideas and practices since she started working at Ummeed. She engages with therapeutic conversations with young people and families experiencing disabilities.

She is also on the resource committee of Forum for Autism, a parent body for people and families experiencing Autism. Jill is currently a Ph.D. student at Vrije Universiteit Brussel exploring lived experience and the social construction of Autism as a part of her research.

https://www.parentune.com/parent-blog/is-it-advised-to-talk-to-child-about-autism/5132

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