According to the World Health Organisation, one in 270 people worldwide has an autism spectrum disorder (ASD) and one in 160 children. In India, this represents about 18 million people. But despite this staggering figure, the empowerment of people with autism is underway in the country.
Very recently, the Indian subsidiary of a large international firm set up a recruitment process dedicated to autistic people, for whom finding a job can be a real struggle. This is an encouraging initiative and a choice that has even led to an increase in innovation in the company. But for India, the inclusion of these atypical profiles is not limited to working life and begins at a very young age, thanks to numerous organisations that carry out in-depth, long-term work to give autistic people a chance to create their own path in society.
The number of children with ASD in the country is difficult to estimate. Several studies claim that the percentage is around 10%. To support them as best as possible and to fight against exclusion and stigmatisation, Indian NGOs have devised education and support programmes as well as specific therapies that place the child at the heart of its own development. For young autistic children and adolescents and their families, there is only one priority: empowerment.
Giving children the tools to find their own way
First, there is education, in the more traditional sense of the term, with numerous projects run by key NGOs specialised in autism such as Action For Autism (AFA), India Autism Center or Biswa Gouri. Often called “early intervention”, their programmes start very early on to give children the key tools to “learn how to learn”, and prepare them for future stages of their development, by stimulating them in different ways. One example is the programmes run by the NGO Biswa Gouri, which combine play, art and sensory activities for 3-5 year olds. Art therapy, particularly through the visual arts, proved to have many positive effects on children with ASD.
The AFA (Action for Autism) integrates parents – and mothers in particular – to ensure that they are fully involved in their child’s development throughout the process. From the age of six, young children with autism are supported in learning academic subjects, but also and above all in learning to communicate, to develop their motor functions and to live and evolve in everyday life. Expressing themselves, using all their senses, interacting, being enthusiastic… But also learning about new technologies thanks to computer courses.
Every effort is made to give children the learning they need. Up to the age of 18, young people are taught in educational programmes that are adapted to their functioning and specificities, most of the time within ‘inclusive schools’. In small groups or through individual learning time, each task allows them to explore, socialise and gain confidence.
When it comes to the key stage of higher education, NGOs are also present: school subjects, preparation for professional life, development of intellectual capacities through music or art. This key stage allows autistic people to be more at ease when working in groups or in a hierarchical relationship in a company. They can then take their destiny into their own hands.
At each stage of the child’s progress, and wherever possible, organisations encourage parents to be fully involved in the development process and activities, either to observe or to participate, and place great emphasis on the ‘power’ of the family in supporting children with autism.
Mediated therapy, family support… The importance of involving parents
In 2015, the Pre-school Autism Communication Trial (PACT), a programme developed by the Universities of Manchester and Liverpool in the United Kingdom to put parent-mediated therapy at the heart of the development of children with autism, was rolled out in India and Pakistan. Originally, PACT “aims to facilitate the development of pre-linguistic and communicative skills that enhance the emergence of meaningful language.” In practice, videofeedback is often used. “10-minute play sessions are filmed by the therapist and then viewed with the parent. When watching the videos, the therapist helps the parent to identify episodes of reciprocal interactions and also helps them to reflect on what they did to make it work.”
Renamed Parent-mediated Intervention For Autism Spectrum Disorder In South Asia (PASS) for its deployment in Pakistan and India, this method has been enthusiastically welcomed in India and tested by the NGO Sangath. The aim of PASS is to enable parents to better understand autism, to better perceive the “signs” of this disorder and to significantly improve communication with their children. The approach is always based on awareness and education and is adapted to the challenges of each country. In India and Pakistan, non-specialists working in the health sector were trained in the PACT/PASS method. They were then able to work with around 30 families. The first studies show that children have much less difficulty communicating with their parents when they have followed the PASS method. This progress encourages the various actors involved to make parents aware of their central role in their children’s progress, whether through the PASS or other forms of family empowerment approaches.
At the Hope Center for Autism, parents are introduced to another method – the ABA method – for Applied Behaviour Analysis – an approach that aims to influence children’s behaviour in order to improve their communication skills and make them more independent. More precisely, ABA offers a highly disaggregated and explicit method of learning to meet the needs of children with autism for precision and thoroughness. Parents trained at the Hope Center for Autism leave with tools to better understand their children, to follow their development and learning and to recreate conditions favourable to their blossoming within the home.
One last interesting example is the AFA, which, through its Family Support & Empowerment programme offers parents several ways of being the driving force behind education and development. Wether it is by co-constructing a programme with therapists that structures the life of the child and the family at home, or by setting up routines and activities to be carried out within the home and with the family, many examples and applications of the methods are offered to parents. The AFA also runs “family support” programmes that address both the difficult phases that children themselves may go through, such as the teenage crisis, by giving parents levers to support their children as best as they can. The aim is also to show and offer support to the parents as regards the anxiety or stress that raising an atypical child can create.
The AFA also assists families to welcome the arrival of a confirmed diagnosis in the best possible conditions, or to promote acceptance of the difference within a household with several children. A support that is crucial for parents, who also need to heard.
Through these Stories, Azickia aims to highlight social impact initiatives, in France and around the world, while not necessarily adhering to all the opinions and actions implemented by them. It is and will remain in Azickia’s DNA to fight against all forms of discrimination and to promote equality for all.
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Photo : Action for Autism India