WHO AM I?
There was a phase in my life when I was known as Neeraj-amma. Though no one calls me that anymore, being amma to Neeraj is a big part of my identity. Which is rather clichéd I guess; “Mera paas ma hai” etc. But the name I am better known by is Merry Barua. Neeraj by the way, is two months shy of 37 years.
WHAT DO I DO?
I help run Action For Autism India (or AFA as we are more commonly known). I advocate for the rights of persons with autism and of their families, plus I learn, share, write, train, etc (along with a pretty awesome team). And I have a super fun time doing all that. People with autism are some of the most awesome folks to be around. So I am pretty privileged in what I do.
If I am able to help people get just three things I am happy.
One, that autism is not a ‘problem’. Disability is not a ‘problem’. If I see autism as a problem and my son as a problem, I cannot expect neighbours, schools, recreational spaces, stewardesses, etc to see him as anything but a ‘problem’. And I ensure my son grows up believing he is a ‘problem’.
Two, when people stare at my son and ask questions they are not being mean. They are just curious. Curiosity is good! It provides a great opportunity to create awareness.
Three, being unconditional in my acceptance of the child and his autism, whether I am a parent or a professional. Unconditional acceptance. Unconditional love.
WHAT INSPIRED ME TO START ACTION FOR AUTISM?
Inspired is a rather imposing term to use; given that it was more perspiration than inspiration. There was no eureka moment when I decided to ‘start’ an organization. Action For Autism has had a very organic growth, jumping in with whatever was required. The work started; the name Action For Autism (AFA) came later.
I remember hanging around the fringes of the discussions on the Persons with Disabilities Bill in 1994 and gingerly bringing up autism when no one had heard the word ‘autism’. I felt a little lost but was determined that somehow Autism had to get into the law. Took over 20 years….but are we quite there!
When I started the work that eventually became AFA I was mostly focused on sharing information and understanding of autism. When Neeraj had eventually received a diagnosis I had felt trapped in a vacuum of no information of any kind. Unlike now, there was no internet, no library with books on autism, no profusion of literature on autism, no quick mobile telephony, etc. I did not know a single other parent who had a child with autism. Services were non-existent. And the general advice was: go have another child, forget about this one, don’t waste your time, etc. You get the drift. It wasn’t just in India; it was true of much of the discovered world at that time more than thirty years ago.
To cut a long story short, as I educated myself I realized that things were not all bleak and doomsday as was generally made out. I realized that kids with autism could learn and progress than was made out, and lead meaningful lives. I wanted to share that understanding with parents. I wanted to share how that could be done. I wanted them to know that it did not have to be a dark hole of no information. And I wanted them to know that life with a child with autism could be fun and fulfilling – if we chose it to be so. And I wanted individuals with autism to be treated not as ‘these people’ but as individuals with rights and deserving of respect.
Let me tell you about some of what we do:
So, we have a whole bunch of programs. Like I said, we tend to jump in wherever there is a need. Our programs span the lifespan from the littlest ones to people in their sixties and more. These include diagnostic assessments, providing Individualised Program Plans and Assessment of Functional Skills, education, behavioural therapy, Occupational and Sensory Therapy, communication therapy, work and employment, counseling individuals with autism as well as their families, teacher training. Most of our programs are designed to serve as models for replication. Alongwith we also work on research, advocacy, and awareness. Some of our programs have been in existence for more than two decades and have naturally evolved and changed as understanding of autism has evolved and changed internationally.
What has remained consistent is a strong focus on unconditional acceptance and on dropping judgments; and on choosing happiness.
1) OPEN DOOR DAY PROGRAMME
The OD Day Program is the laboratory school that was started in 1994 to develop, try out and disseminate teaching strategies. It is also the training ground for teachers. There is a strong focus on using assistive strategies versus expecting the children to act ‘normal’. When ready children move on to inclusive classrooms. Like other AFA programs it welcomes students form a diverse range of abilities and economic and social backgrounds.
2) PARENT CHILD TRAINING PROGRAM
Started in 2000 the PCTP is a short school program with a focus on parent/family empowerment. The PCTP gives parents the tool to understand their child and the child’s autism, and change their attitudes to disability.
3) EXTENDED PROGRAMME FOR OUTSTATION FAMILIES
One of the several programs tailored to specific needs it is a complete program for the many families who come from places outside Delhi and India. It includes an intensive three to five day program of observation hands-on sessions with the child, feedback and discussion with special educators, clinical psychologists, occupational and sensory integration therapists, and may include assessments and curriculum planning. Parents are encouraged to stay in touch to make modifications and implement additional skills.
Let me also tell you about the programs for adults
Aadhaar Vocational Centre
Aadhaar is a sheltered workplace for those 18 and above. It tries to break the infantile treatment of adults with disabilities that is rampant even among parents, and promotes agency and respect. All work and no play makes Jack a dull boy. So along with work there are fun events like outings for birthdays, movies and performances, picnics and so on.
a) On the Job Training for Work Behaviours and Soft Skill Training
Adults with Aspergers Syndrome and High Functioning Autism too often face difficulties in understanding and negotiationg the dynamics of a work environment . In addition to training in relevant work skills the Program addresses punctuality, regularity and maintaining consistency; coping with unpredictable changes in routines and structures, self regulation, and developing interpersonal skills with colleagues.
b) Friendship Club
Seeks to provide opportunities to experience friendship. Initiated with Best Buddies International, it facilitates social events such as a party at AFA or an evening at a club alongside non-autistic peers.
5) ANVAY SCHOOL OF RESEARCH AND TRAININGS
Research is the key to understanding people with autism, build upon existing services and guide policy. Over two decades, through multiple national and international collaborations we have focused on applicable research that provides an Indian perspective. AFA is also a training ground for budding professionals. Students of social work, psychology, and special education, among others, from leading universities in India and other parts of the world intern at AFA. We conduct a range of trainings for professionals as well as for parents. These include a diploma in autism, a BEd in Autism, short courses of a few days to a few weeks, as well as courses tailored to individual or group needs.
Our publications include the Autism Network Journal that has carried the most informative articles for 23 years now. Available to all Members of AFA, back issues are also available online. In addition since its first handbook on Autism in 1996 AFA has brought out a few others. However we do find ourselves writing more for other publishers than for ourselves!
Our advocacy work has had far reaching impact in general awareness in the community, diagnosis, education, employment, as well as in the inclusion of autism in the National Trust Act, the Rights of Persons with Disabilities Act and various policies. AFA’s initiation of the Autism Week across India in 2000 preceded the UN’s World Autism Awareness Day by 7 years. We may have a resource crunch but not an ideas or initiative crunch.
WHAT ARE OUR CHALLENGES AS AN ORGANISATION?
To mention two:
- Financial! As an organistion that provides services to children from all backgrounds, we struggle to find sponsorships for those who do not have the means. What makes it more challenging is that too often funders focus on quantity (versus quality) for the support they provide. With individuals with autism that can not but be a challenge.
- Dearth of well-trained professionals. For every new or expansion of a service or we have to expend a great deal of training time for each one who joins our team.
HOW IMPORTANT IS RESPITE CARE AND ASSISTED LIVING SERVICES IN THE INDIAN CONTEXT?
Critical. Especially with the disintegration of the extended family. When a family faces an emergency, needs to travel urgently, faces hospitalization, or is in any crisis, often there is urgent need for a well-equipped respite centre. Also, when the mother simply needs a break from caregiving. Or husband and wife need to reconnect without their children.
As society becomes increasingly uncaring and turns against those who are different, persons with disability will face the brunt of greater discrimination. In such a space it is critical, that when parents age with attendant health problems, and are faced with their own mortality, to ensure that there are assisted living facilities where individuals with autism can live with dignity, taking their own decisions, and leading meaningful lives, when family support slips away.
MY FAVOURITE WORK RELATED MEMORY?
ANY FUTURE-PLANS OF AFA, I WOULD LIKE TO SHARE?
Employment, both sheltered and open.
Group Homes for assisted living to address parental concerns of “What after us.”
These two are of course inter-connected. Adults with autism need gainful employment for valued lives and self-worth. The employment needs in the community are as diverse as the spectrum of autism and range all the way from independent open employment to employment in sheltered workspaces. Securing long-term sustainable employment opportunities needs to be addressed urgently. AFA is already involved in skilling and identifying opportunities and placements. But much more needs to be done for which we need a great deal of support from interested families as well as the community. Likewise, with group homes which is an essential need for those individuals who will need some level of support in leading everyday meaningful lives.
AFA has started work on Ananda, an assisted living facility; making it sustainable (both financially as well as in the available pool of trained facilitators), creating systems, and all the other long term nitty-gritties.