I was a first-born child. I have very little recollection of my early childhood but i understand from my parents and close relatives that I was a very happy child, full of energy and very naughty. In those years there was a lottery system for admission to schools and I got admitted to one of the most prestigious South Delhi schools. By the time I stepped out of nursery, my mother was called in and told that I was not involved in class activities, not coping up with my academics, was spaced out in class, unable to make friends, ran out of the class without the teacher’s knowledge… and so the list went. My mother was asked to get me diagnosed. My diagnosis happened and the psychiatrist wrote the words on my report that would rule my life forever – Autism Spectrum Disorder!!

 

My parents were crushed. Even more crushing was the school’s attitude when the diagnosis was shared with them. Their attitude towards me and my parents changed completely. The teachers who were tolerant till then, now focused on complaining. They went out of their way to put pressure on my parents to take me out of the school. My mother was called in as a shadow teacher for me. She was the default special educator and all my work at school was shifted to my mother’s shoulders.

 

She had to put up with comments from the principal and the teachers that spoke about how worthless they viewed my presence at school. “You are wasting a seat. We have so many capable children waiting to take his place.” “Why don’t you look at a special school for him? We can’t handle him!” “We have a long waitlist you know?”

 

All this put immense pressure on me, and I felt demotivated, frustrated and unwelcome for 6 long years of my life. When I look back, it is this experience which made me determined to do something to ensure that no child should undergo such an experience. 

 

Over the years I have been educated in 3 schools and was lucky to find two very good schools. The schools had a culture of acceptance of diversity and provided me with the necessary flexibility and encouragement ended to be successful in academics. However, I found that most of them did not have any real understanding of what autism is. 

 

I had difficulty making friends, especially in high school. High school was a lot different from middle school. Some students used to bully me because I was different, while others ignored me or were polite but did not involve me. Whenever I used to complain about it to my teacher or counsellor, they would talk to the whole class about it. But even the students who were neutral to me, would simply say that nothing happened. On the other hand, the bullies would turn the tables on me, by saying that I started it. And since they were in the majority, I used to face the consequences and get scolded. No one in my class was even willing to sit with me. I was all by myself. At that moment I was so nervous and depressed that I requested my parents to shift me to home-schooling. But they refused.

 

I began to think what I could do to change this situation. I understood that my classmates had no idea what autism was. Even when I would tell them that I behaved in a particular way as I was autistic, I would only get a confused stare. They did not understand that my social ineptitude stemmed out of the fact that I did not understand sarcasm or rhetoric nor could i decode most of their body language. I was literal in my communication as well as in understanding. I had narrow interests and i could not help myself talking a lot about these and i had difficulty in sustaining any communication beyond those. Social settings and maintaining sustained eye contact were exhausting for me and so on so forth.

 

I thought if I told the whole school about autism, how it affects an individual and what changes can be made to make them feel included, maybe things might change for the better. I began an Autism Awareness Program at school. It gave some mixed results. While there was no immediate change in attitude, slowly I could see people stopping to say hi to me in the corridor. Better still, I started noticing that some students did make an effort to be nicer to other students with invisible disabilities.

 

I told my parents that I wanted to be an active autism advocate. They were happy about my decision but told me to start it after my board exams got over. Hence, I decided to take a break for one year between my High school graduation and college to spread awareness and acceptance in Schools and society. Thus, began my journey as a advocate. I spent some time to understand more about Autism and Autism advocacy. I learnt that Autism advocacy can be for Self and for the Community.

 

What exactly is self-advocacy? Self-Advocacy is learning how to speak up for yourself, making your own decisions about your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening, and learning, reaching out to others when you need help and friendship, and learn that you are in control of your own life.

 

Why must we Self Advocate? So that you have the knowledge needed to succeed and are given the chance to participate in decisions that are being made about your life.

• No one knows ‘You’ and what ‘You need‘ better than ‘You’

• Parents will not be there in College and in Life

• People aren’t mind readers; you need to ask for support to get it

• If you don’t stand up for yourself, you don’t get respect or are taken advantage of

• Self-advocacy builds self-sufficiency

 

Some Important Tips

• Be aware of your own self, what Autism means, your strengths and your challenges

• Learn to articulate what accommodations you need and why

• Participate in all decisions that Impact you

• Don’t assume everyone knows about Autism, speak up and Educate them

• Embrace your disability - do not be shy or defensive about it.

• Don’t let other define what you can or cannot do

 

I have been able to reach out to many schools and NGOs and started doing webinars on autism awareness.

 

So far, I have been able to conduct 9 webinars and the response has been very encouraging. I have been able to reach out to more than 500 people including parents, children and Young adults with Autism, Educators, Professionals and so on so forth. In the process I have been given the opportunity to mentor more than five children on the spectrum. It has been an exciting journey and am overwhelmed with the encouragement and love received from everyone . It has made me even more determined to continue my journey and roll out my Project Nurturing Neurodiversity which is an outreach program to the Community 

 

It is a Project started with the aim of creating awareness about Neurodiversity and promoting its acceptance in Schools, society and the workplace. It aims to alter the profound bias in the education system from a ‘Deficiency’ approach to ‘Differences’ and to address the negative perception around Autism. It intends to achieve the following over the next few months:

• create a document based on ‘Policy changes for promoting neurodiversity’ and ‘Best Practices for promoting neurodiversity in schools’

• send petition to the government based on these suggestions

• seek help of NGO/ Parents / autism advocates / professionals to reach out to 200 + school leadership with specific recommendations on promoting Neurodiversity in schools

• create a website to promote neurodiversity

• use the website to mentor other children facing issues in Schools

• run an anti-bullying campaign in schools.

 

I had the fortune of having access to a good school, supportive parents and teachers and with the combined efforts I have been able to achieve a degree of self-sufficiency and independence. I have also realized that there are many who do not have such fortune. It is imperative for us to come together and work with the Schools, society and the Policy makers to make a meaningful support structure for People on the spectrum. We do not need pity; we need understanding and the necessary support.