Narratives about Self from High Functioning Autistic Adults in India

Background:

Autism in India remains a highly stigmatized condition, and many adults with high functioning autism continue to be undiagnosed and/or hidden. Even once the diagnosis is received, parents and therapists often do not disclose or share the diagnosis with the individuals with autism. So, what do our young people know about their autism? How do they perceive and understand themselves and their differences? Not many studies have explored this from the perspective of people with autism. The RAFIN Adult Study is the first to systematically examine adults with ASC in India.

Objectives:

This paper reports initial data on explanations by high functioning adults about their similarities and differences and their understanding of the reasons behind them.

Methods:

Thirteen high functioning adults with ASC were interviewed in their homes. The interactions with the adults were carried out through semi-structured interviews in the preferred language and lasted for about 2-3.5 hours. Amongst several other topics, we discussed the individual’s understanding of their own self, their perceptions of similarities and differences from others around them, the nature of these differences (if any), as well as the kind of support they may like. This data is a part of a larger study of 54 adults and their families in Delhi & NCR region where we spoke to adults and their families about their journey since receiving the diagnosis as well as plans for the future.

Results:

Almost all participants had specific thoughts about how they were similar to and different from non-autistic people. The responses were categorised in various themes, such as concrete attributes, personality attributes, interests and preferences, specific skills, diagnoses, disclosure about diagnoses, strengths and limitations of being different.

Conclusions:

In one of the first studies of adults with autism in India, the authors present self-reports of verbally fluent adults with ASC about their understanding of their similarities and differences.

The study highlights that people on the spectrum are aware of their differences – some as early as primary school. However, an understanding and explanation of this difference comes much later, if at all. Most participants in our sample needed further clarity in understanding their difference.

The study emphasizes the need for active involvement of people with ASC in all life aspects, including research and interviews, aimed at understanding their unique life experiences; need for development of self-report measures and interview strategies; and most importantly the process of disclosure of diagnosis to individuals with autism.