Assessing Quality of Life as an Outcome for Adults with Autism

I am a case manager at a small program for adults with autism. We offer a variety of vocational and residential programs. I see the value of incorporating the Quality of Life concept into what we do, but I am confused about how to actually do it. Can you help me understand the best ways to get started? I appreciate any suggestions you can make, thank you!

Answered by
Karen Parenti, MS, PsyD, Mary Jane Weiss, PhD, BCBA-D, Tim Nipe, PhD, BCBA-D, and Josephine Southwick, MEd, BCBA
Melmark, Inc.

Credit: Artwork by Marina Azimova, EdM, MSW, BCBA

This is a fascinating and timely question, and you are most certainly not the only provider struggling to incorporate this concept into service delivery. In some ways, Quality of Life is a buzz phrase that has captivated society. It can be used to evaluate one’s situation, to alter one’s life path, and to carve out a new direction. In recent years, many concepts commonly used by the general population have been extended to people with disabilities, including Quality of Life. The Arc’s Position Statement on Quality of Life (The Arc, 2009) states, “People with intellectual and/or developmental disabilities must be able to live the lives they choose and have a good quality of life.” So, let’s first examine, what does this mean?

What is Quality of Life?

Questions of how we can define and evaluate the Quality of Life experienced by individuals with autism and intellectual disabilities have been asked for over twenty years (e.g., Campo, Sharpton, Thompson & Sexton, 1997). What is a good Quality of Life? What does it look like?

The core Quality of Life (QoL) domains that have been repeatedly identified include: interpersonal relationships, social inclusion, personal development, physical well-being, self-determination, material well-being, emotional well-being, rights, living environment, family, recreation, and safety/security (e.g., Felce & Perry 1995; 1997; Verdugo et al., 2005; WHOQoL, 1995).

Elements considered when assessing Quality of Life include: housing, employment, leisure interests, social connections (Schalock, Bonham, & Marchand, 2000). There is some consensus on which elements of Quality of Life are most important (e.g., Ayres et al., 2018; McConachie et al., 2017; Satriale, 2018; Bramston, Pretty, & Chipuer, 2002). These include:

Emotional well-being, often considered synonymous with happiness;
Social well-being, associated with connection, engagement, relationships;
Physical well-being, associated with health, level of physical activity, and overall wellness;
Self-determination, as evidenced by the degree of control and choice;
Social inclusion, as indicated by community immersion and engagement;
Personal development, focused on skill development and the attainment of independence; and
Personal rights, including the preservation of dignity (e.g., Plimley, 2007).

Researchers have recently examined these domains for persons with ASD (García-Villamisar & Dattilo, 2010; García-Villamisar, Dattilo, & Matson, 2013); however, communication deficits and unreliability in the population complicate how these areas are measured. In particular, the vocal communication impairments make assessment and self-report more challenging. Parental and caregiver report, while relevant, is also an incomplete source of information as these sources may be subjective and are influenced by where the individual is currently residing (i.e., living with parents, living in a group home placement). It is highly recommended that additional sources of information are integrated into the assessment process.

Instruction targets selected for adult learners with ASD often relate primarily to vocational training, life skills and daily living tasks, leisure activities, and functional academics (Biggs & Carter, 2016). While these areas of instruction are appropriate (e.g., leisure, vocational, and recreational activities), they may also require expansion. Targets relevant to enhancing the quality of life, such as choice-making, informed decision-making, problem-solving, and self-determination, require different assessment and intervention approaches. Ultimately, Quality of Life is related to the individual’s capacity for contacting fulfillment and joy in everyday pursuits (Parsons, Reid, Bentley, Inman, & Lattimore, 2012). Hence, instruction needs to focus on the improvement of choice, control, and personal self-determination. Indeed, happiness itself needs to be an ultimate outcome that is systematically assessed.

How to Assess for Quality of Life to Guide Programming

Under ideal circumstances, an individual has the capacity to report his or her own physical and emotional well-being. As stated above, many individuals with autism and developmental disabilities may struggle to communicate such internal states, and validation of such reports is equally difficult (Green & Reid, 1999; Schalock, Bonham & Marchand, 2000). Accommodations such as augmentative or assistive communication technologies, to support self-reporting, or the use of an identified representative (i.e., support staff, family member, or friend) to respond for the individual, may minimize the detrimental effects of communication impairment on the reporting of QoL (Verdugo, Schalock, Keith, & Stancliffe, 2005). However, even when these challenges have been minimized, the subjective measures may still have some inaccuracies (Felce, 1997; Felce & Perry, 1995; 1997). In addition, these measures tend to remain stable over time and therefore may lack the sensitivity required for fine-grained analysis. As a result, it may be hard to measure an intervention’s impact on QoL (Verdugo, et al., 2005).

For these reasons, the trend in the quantification of QoL is towards a combination of objective and subjective measures (Schalock et al., 2000; Verdugo, et al., 2005). This multi-pronged approach includes subjective self-report and objective data in a thorough assessment process (Schlack, 1999).

Finding Ways to Observe Indicators of Quality of Life

When supplementing subjective self-report measures with direct observations of the individual’s behavior, one must first identify and define behaviors that are indicators of QoL or happiness. This has been accomplished through caregiver report and through direct observation of the individual when engaged with preferred items or in preferred activities (Green & Reid, 1996; Parsons et al., 2012). It is important to note that though these behaviors can be directly observed, they are actually aspects of QoL, such as happiness or joy. As such, they need to be defined in a way that allows us to measure them objectively. Investigators have measured happiness utilizing direct observation. For example, Green and Reid (1996) measured the frequency of “happiness” behaviors (e.g., smiling and positive vocalizations), when the individual was in possession of preferred items. Parsons et al. (2012) began by asking caregivers to identify behavioral indicators of happiness and unhappiness, as well as to designate preferred and non-preferred situations. The investigators identified behaviors that were correlated with happiness or unhappiness within the appropriate context. Interestingly, the three adults who participated in this study almost exclusively selected the situation associated with their indices of happiness, when given the choice between those situations and the ones correlated with unhappy behaviors.

Clinical Suggestions: How to Include Quality of Life in Programming

What follows are some concrete suggestions for how those who serve this population can integrate these concepts into programming. To orient, we need to return to basic questions for families and providers. What does good programming look like in terms of Quality of Life? How can a family know whether a provider is focused on this as a goal of intervention? How does it incorporate improved QoL measures? Several elements appear to be crucial to achieve an increased and deep focus on QoL from a human service provider’s perspective, and can help to begin to integrate QoL into service provision, thus increasing individual satisfaction and self-determination. Below are some strategies for enhancing the extent to which QoL is discussed and programmed for in treatment teams.

1. Making Quality of Life a Priority
  Perhaps the first step is to identify Quality of Life explicitly as a valued treatment outcome. In this way, Quality of Life becomes integrated into the assessment process, and ultimately into goal planning and treatment. This integration should begin at first contact with the client, and QoL goals should be developed in the initial planning process. Goals should be reviewed quarterly, and should be amended or enhanced, depending upon progress.
2. Involving the Individual Maximally in his/her own Treatment Plan
  While there has been a trend for providers to include persons with disabilities in their treatment plans, more can be done to fully involve them in their treatment goals. Beyond attending the meeting, there is a need to get direct input from the client about goal selection, environmental arrangements, social experiences, community integration, health planning, leisure pursuits, and vocational activities. For example, regarding community integration and leisure pursuits, the client should be given choices among available options, depending upon their interests. Individualization of community experiences should be the goal, rather than universally applied, schedule-based community outings. The ultimate goal is to achieve true, personalized integration of the individual into their local community, as opposed to simple or preconceived exposure.
3. Educating and Supporting Families to Consider and Value Quality of Life as a Significant Focus of Intervention and Outcome
  Families want their loved ones to be happy. However, families of those with disabilities may not understand the ways in which the personal happiness of their family member might be considered in habilitative program planning. Programs can partner with families in achieving the goal of integrating QoL into assessment and intervention. Providing training to families about the ways in which QoL can be identified and individually added to goals will ultimately help individuals make informed choices and have much-needed control over their living arrangements, vocational activities, leisure experiences, and community outings.
4. Training Staff Members in the Importance of Quality of Life and in the Methods used to Ensure Integration of QoL into the Treatment Environment, Goal Development, and Assessment of Progress
  Staff members are invested in ensuring the happiness of those they serve, but they may lack an understanding of how to assess it and how to develop programs that lead to better outcomes in this regard. Providing information about the concept, and most importantly, about the specific behaviors that help fulfill QoL, will create a culture in which treatment decisions actually improve quality of life.

Putting It Altogether

Quality of Life is an essential outcome in serving individuals with developmental disabilities. For those with autism, special challenges exist for the assessment of Quality of Life, for integrating the individual into the treatment process, and for moving the treatment team into the direction of embedding QoL into programming. However, novel assessment strategies exist that are fully consistent with a behavior analytic framework, including focusing on overt behavior and direct assessment. Programs can advance their focus on QoL by explicitly committing to QoL as a primary outcome, by integrating QoL into both assessment and treatment planning, and by educating caregivers, staff, and other stakeholders about the importance of QoL measures.

Provider agencies serving individuals with autism can begin by ensuring that there are treatment goals involving QoL embedded into the comprehensive program plan, including the behavior plan. This can be done after completing a preference assessment which also involves that person in the process, which in turn provides that person with choices and ownership of the plan. Additionally, at each annual program planning meeting, the service provider can educate families regarding the importance of adding QoL measures to the plan in addition to skill acquisition. Provider agencies should also include QoL training in their new staff orientation and in the on-the-job training. Widening the lens of intervention to include a focus on QoL advances the humanity of our service provision and maximizes the independence and freedom of those we serve.

References

Ayres, M., Parr, J. R., Rodgers, J., Mason, D., Avery, L., & Flynn, D. (2018). A systematic review of quality of life of adults on the autism spectrum. Autism, 22, 774-783. doi: 10.1177/1362361317714988. Epub 2017 Aug 12.

Biggs, E. E., & Carter, E. W. (2016). Quality of life for transition-age youth with autism or intellectual disability. Journal of Autism and Developmental Disorders, 46(1), 190-204.

Bramston, P., Pretty, G., & Chipuer, H. (2002). Unraveling subjective quality of life: An investigation of individual and community determinants. Social Indicators Research, 59(3), 261-274.

Campo, S. F., Sharpton, W. R., Thompson, B., & Sexton, D. (1997). Correlates of the quality of life of adults with severe or profound mental retardation. Mental Retardation, 35(5), 329-337.

Felce, D. (1997). Defining and applying quality of life. Journal of Intellectual Disabilities Research, 41, 126-135.

Felce, D., & Perry, J. (1995). Quality of life: Its definition and measurement. Research in Developmental Disabilities, 16(1), 51-74.

Felce, D., & Perry, J. (1997). Quality of life: The scope of the term and its breadth of measurement. In R. I. Brown (Ed.), Quality of life for persons with disabilities: Models, research, and practice (2nd ed., pp. 56-71). Cheltenham, United Kingdom: Nelson Thornes Ltd.

García‐Villamisar, D. A., & Dattilo, J. (2010). Effects of a leisure programme on quality of life and stress of individuals with ASD. Journal of Intellectual Disability Research, 54(7), 611-619.

Garcia-Villamisar, D., Dattilo, J., & Matson, J. L. (2013). Quality of life as a mediator between behavioral challenges and autistic traits for adults with intellectual disabilities. Research in Autism Spectrum Disorders, 7(5), 624-629.

Green, C. W., & Reid, D. H. (1996). Defining, validating, and increasing indices of happiness among people with profound multiple disabilities. Journal of Applied Behavior Analysis, 29(1), 67-78.

Green, C. W., & Reid, D. H. (1999). A behavioral approach to identifying sources of happiness and unhappiness among individuals with profound multiple disabilities. Behavior Modification, 23(2), 280-293.

McConachie, H., Mason, D., Parr, J. R., Garland, D., Wilson, C., & Rodgers, J. (2017). Enhancing the validity of a quality of life measure for autistic people. Journal of Autism and Developmental Disorders, 48(1), 1-16.

Parsons, M. B., Reid, D. H., Bentley, E., Inman, A., & Lattimore, L. P. (2012). Identifying indices of happiness and unhappiness among adults with autism: Potential targets for behavioral assessment and intervention. Behavior Analysis in Practice, 5(1), 15-25.

Plimley, L. A. (2007). A review of quality of life issues and people with autism spectrum disorders. British Journal of Learning Disabilities, 35(4), 205-213.

Satriale, G. M. (2018). Parent perspectives on indicators of quality of life and happiness for individuals with ASD Including whose responsibility it is to address them (Doctoral Dissertation). Gwynedd Mercy University, Philadelphia, PA.

Schalock, R. L., Bonham, G. S., & Marchand, C. B. (2000). Consumer based quality of life assessment: A path model of perceived satisfaction. Evaluation and Program Planning, 23(1), 77-87.

The Arc (2009). Quality of life position statement. Retrieved June 13, 2018 from: https://www.thearc.org/who-we-are/position-statements/quality-of-life/quality-of-life

Verdugo, M. A., Schalock, R. L., Keith, K. D., & Stancliffe, R. J. (2005). Quality of life and its measurement: Important principles and guidelines. Journal of Intellectual Disability Research, 49(10), 707-717.

WHOQoL Group (1995). The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science & Medicine, 41(10), 1403-1409.

Citation for this article:

Parenti, K., Weiss, M. J., Nipe, T., & Southwick, J. (2019). Clinical Corner: Defining and assessing quality of life as an outcome for adults with autism. Science in Autism Treatment, 16(5).

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Defining and Assessing Quality of Life as an Outcome for Adults with Autism