Experiencing Independence: A Qualitative Study with Autistic Adults in India

Abstract

Background:

Understanding independence in autism requires a nuanced exploration of how developmental challenges intersect with socio-cultural factors. There is a lack of research exploring how autistic adults in the Global South, including India, understand and experience independence. In this study, we examined independence as a culturally situated, participant-defined construct shaped by autistic lived experience and Indian sociocultural contexts. We aimed to deepen understanding of the ways in which Indian autistic adults conceptualize independence, the barriers they encounter, and the coping strategies they develop to experience independence.

Methods:

We conducted semi-structured interviews with 15 purposively sampled autistic adults in India. We analyzed the data using reflexive thematic analysis following an inductive, iterative approach to develop themes from participants’ narratives.

Results:

Three themes captured autistic adults’ lived experiences of independence. Aspirations of independence described independence as an interplay between embracing courage, exercising self-determination, and demonstrating psychological resilience. “Independence cannot be easily achieved/attained” reflected on navigating a society that often overlooks neurodiversity, which makes achieving independence particularly challenging. Navigating independence through support and self-advocacy highlighted how participants actively managed their independence by drawing on external support and advocating for their needs.

Conclusions:

Our findings provide a foundation for developing culturally responsive frameworks to support independence among autistic adults in India. Key implications for practitioners and policymakers involve designing contextually grounded interventions and addressing systemic barriers.

Community Brief

Why is this an important issue?

When people talk about “independence,” they often focus only on day-to-day tasks like cooking, cleaning, or socializing. However, independence is not a one-size-fits-all concept. Autistic people may perceive it very differently from non-autistic people. In Global South countries, like India, autistic voices are rarely heard. This study is the first qualitative exploration in India of autistic adults’ experiences of independence, and it recognizes that their needs and experiences may differ from those in developed countries. Listening to autistic voices from underrepresented backgrounds is vital for inclusive policies and support systems.

What was the purpose of this study?

The study examined how autistic adults in Indian cultural contexts perceive and define independence. It also sought to understand how they use different coping strategies to overcome challenges and achieve their desired level of independence.

What did the researchers do?

Researchers interviewed 15 autistic adults from two metropolitan cities in India, Kolkata and Mumbai. Open-ended questions explored participants’ perceptions, experiences, challenges, and strategies related to independence. The researchers used thematic analysis to identify key patterns in how autistic adults view, experience, and navigate independence in their daily lives.

What were the results and conclusions of the study?

The findings revealed that Indian autistic adults view independence as a gradual journey—something that grows over time. The participants stated that real independence is not just about doing tasks alone; it is about having courage, making your own choices, having the right support, being respected, and having emotional strength. Participants emphasized the challenges of achieving independence in a society that often does not understand autism, highlighting the need for greater understanding and inclusivity. They also shared how support from family, safe spaces, and speaking up for themselves play crucial roles in helping them navigate barriers and maintain independence. These insights underline the importance of empowering autistic people while addressing societal and systemic obstacles.

What is new or controversial about these findings?

This study looks at independence from the viewpoint of Indian autistic adults themselves. Our findings highlighted that true independence goes beyond functional abilities. The study also revealed how things like strict parenting, gender roles, and discrimination can have an impact on autistic people’s mental health and limit their freedom. Hence, independence entails resilience, choice, and challenging these unfair barriers.

What are potential weaknesses in the study?

Autistic researchers bring lived experience and insights that can shape relevant and respectful questions, notice and highlight overlooked details, and ensure interpretation reflects autistic perspectives. In this study, they joined only in later phases due to timeline and funding constraints, contributing to theme refinement, reviewing interpretations, and co-authoring outputs. However, they could not influence the original questions or approach—a missed opportunity future research should address. In addition, participants noted that if they had received interview schedules beforehand, they could have provided deeper responses. Since the researchers conducted the study in two metropolitan cities in India, the findings may not fully represent the autistic experiences in rural areas or other socio-cultural contexts.

How will these findings help autistic adults now or in the future?

The study provides critical insights to build more inclusive and supportive environments for autistic adults. By identifying barriers like societal ableism and highlighting strategies such as self-advocacy and technology use, the findings can guide families, practitioners, and policymakers to focus on strengths, respect, and accessibility in promoting independence and well-being. Future research should include autistic voices from across India and provide interview materials in advance to capture diverse perspectives and ensure a more comfortable interview experience.