Embracing the Spectrum: Illuminating Insights on Autism & Marginalisation
Autism is a neurodevelopmental disorder that affects communication, behavior, and social interaction. Due to lack of awareness and acceptance Autism is frequently misunderstood and stigmatized in India, especially among marginalized communities. This stigma often stands in the way of reaching out for support, eventually leading to misdiagnosis, delayed diagnosis or maybe no diagnosis at all (Hus & Segal, 2021). Children from lower socio-economic backgrounds and those living in rural areas are more likely to be diagnosed with autism at a later stage and often do not receive adequate support or any support at all (Raina et al., 2017, 368-374).?
According to a systematic review and meta-analysis conducted by the Neurological Society of India, the prevalence of autism in children under 10 years of age in India is estimated to be 1 in 100. However, this number may not be fully representative as limited numbers of diagnostic facilities and trained professionals in many parts of the country can result in delayed or even missed diagnoses. A second limitation is the paucity of educational opportunities for autistic children generally, and specially in marginalized communities as schools often lack necessary resources and training to support autistic learners. An additional hurdle for members belonging to these communities can be the expense, as many families struggle to afford the necessary treatments and therapies. Children with autism and developmental disorders in marginalized communities in India face numerous challenges, including a lack of access to proper diagnosis and treatment, inadequate education and support, and social isolation and stigmatization.?
Addressing these challenges requires a multi-faceted approach that involves increasing awareness and understanding about ASD, providing access to quality healthcare and education, and addressing social and cultural barriers to inclusion and acceptance. One place that works tirelessly towards this goal is Potentials Therapy Centre in New Delhi where they provide Eye to I therapy and research, parent counseling, school liaison and many more services. In March 2023 I joined the Eye to I Research team as an Intern. As a BA+MA Clinical Psychology student at Amity University, Noida, my strong desire to undertake research within the field of child psychology led me to be in this place.?
Recently I befriended a young girl named Riya who came for therapy at Potentials. I found her to be a joyful girl who grew up in an orphanage, surrounded by the love and care of the people who raised her. But her caregivers noticed that she wasn't developing at the expected pace, and they became worried about her future. They sought help from Potentials Therapy Centre hoping to give her the best chance in life. I observed that Riya has difficulties with her vision, and her speech is affected, making it hard for her to communicate her experiences. But she has a unique talent - her sense of touch is incredibly sensitive. While interacting with her, I saw that she enjoys exploring the world around her by feeling different textures, objects, and shapes, which helps her develop her gross and fine motor skills.
Riya's therapists at the centre absolutely recognize her strength in tactile senses. So, they incorporate sensory integration therapy into her play sessions helping her develop visual-motor coordination and enhance her cognitive development. I have seen Riya struggling to stay focused during therapy sessions but with patience and encouragement from her therapists, she tries to engage in the activities and interact with those around her.
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Riya is a complex individual - as much as any child is. She can be cheerful and optimistic or moody and stubborn. Still, her caregivers and therapists have been impressed with her resilience and determination. Through her journey at Potentials Therapy Centre, I feel Riya is learning to overcome her challenges by improving her language and tactile exploration as well as listening skills which help her navigate the world around her. The best part of this process for me was witnessing Riya’s willingness to learn new things, engage with everyone in the room and try to convey her thoughts in whatever way she can. Being with Riya I learnt that irrespective of what problems you face, it’s important to see the brighter side which may bring you ample joy and hope. However, I even believe that every child is different, comes in with a variety of emotions and has an environment which may not be similar to Riya. The only similarity that remains is “our perspective” towards them. Undoubtedly, this interaction is not enough to understand the whole marginalized population but indeed in future, if I meet any child from a marginalized background, I will definitely keep my experience with Riya in mind and be vigilant about noticing their strengths which can be enhanced further.?
Riya's story may serve as an inspiration to all those who face autism, developmental delays and challenges. Temple Grandin, an American academic, animal behaviorist and also an autistic spokesperson once said, "I am different, not less." Being with Riya at Potentials, I now believe that with the proper support and therapy, every child can reach their full potential and lead a happy and fulfilling life. By working together, we can create a more supportive and inclusive environment for autistic children, and endeavor to improve and increase accessibility to these supportive environments for all sections of the society.??
-written by Khyati Saxena