Adult Daily Routines: A Mixed-Method Approach to Making Meaning

Background:  

ASD research is increasingly conducted throughout the world, but most of the focus remains on children. This is similarly true in India, where services and other opportunities for adults are extremely limited even in urban areas.  How do adults with ASD spend their time? Where are they, who are they with, and what are they doing all day? Does this differ by level of functioning? What causes stress for parents? And what would be most helpful to parents and adults now? These questions can be bundled into what researchers have often called “daily routines” and what has been articulated over the past twenty years as the basis of ecocultural theory (Gallimore, Weisner, Kaufman, & Bernheimer, 1989). 

Objectives:  

This paper presents data on adult daily routines from a collaborative and mixed-methods project on families of adults with ASD in India. 

Methods:  

Interviews with parents and adults, observations in the home, direct assessments, and questionnaires were completed with 52 families of adults (54 adults) with ASD in New Delhi and the National Capital Region. To obtain detailed information about daily routines, parents reported on a typical weekday. These data were transformed into six variables (hours awake/asleep; napping; outside the home; in a structured setting; inside the home in a private space; and spent with different individuals). Transcripts were used to code activities that adults were reported to engage in (e.g., watching TV, going for a walk, reading). Parents completed questionnaires on stress, parent competence and empowerment.

Results:  

Higher functioning adults are more likely to have a structured setting and spend time outside the home; adults who stay home do so both because of their preferences and their disruptive behaviors. Adults at home spend an average of 22 hours a day inside. When adults are home, regardless of their level of functioning, they generally spend approximately 75% of their waking time in shared family spaces but during about 60% of this time, they are not interacting with others. Parents report there are not enough suitable work and training centers that are easily accessible. Approximately 70% of both mothers and fathers in this study had levels of stress that are considered in the clinical range; higher parental stress was found in families where mothers worked outside the home but there was no association between parent stress and adult daily routines. 

Conclusions:

Most families of adults with ASD have adapted their lives to fit their adults’ needs. Still, significant barriers exist for families to access appropriate services for adults in urban India and parents report a range of needs related to their adults. This project used a mixed-methods and community-based participatory research model to understand the daily activities of adults and reasons for these routines. The approach in this study is one that the research community may find of value, as an increasing number of studies focus on adult populations and seek to understand how to better serve adults and their caregivers.