One of the responsibilities of a behavior analyst is to provide intervention that promotes socially significant outcomes. Quality of Life (Qol) might be one component of social significance, but what is QoL and how is it measured? QoL is defined by the Word Health Organization as an “individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns. It is a broad ranging concept affected in a complex way by the persons’ physical health, psychological state, level of independence, social relationships, and their relationship to salient features of their environment” (Kuyken et al., 1995).
There are many QoL measures that have been utilized to assess autistic adults. The WHOQOL-BREF is one of the best-known instruments developed for assessing QoL and is available in more than 40 languages (Skevington et al., 2004). The Qol-Q was developed to assess the QoL of individuals with intellectual or developmental disabilities (Schalock, 1993). Both of these QoL assessments have been utilized in studies to assess the QoL of autistic adults. More recently autism specific QoL measures have been developed, including the ASQoL (McConachie et al., 2018) and the PROMIS Autism Battery—Lifespan (PAB-L) (Graham Holmes et al., 2020). These autism specific QoL assessments were developed in collaboration with autistic community members. This list of QoL assessments is by no means exhaustive, but it does offer tools for behavior analysts to consider utilizing to measure QoL.
Historically, measuring the QoL of autistic individuals was often conducted by proxy (Chiang & Wineman, 2014; Saldana et al., 2009; van Heijst & Geurts, 2015). More recently there has been a shift to valuing autistic adults as experts in their own lives and validating their perceptions of their QoL (White et al., 2018). When autistic adults measure their subjective QoL they report relatively high scores, scores that are on-par with those without disabilities (Hong et al., 2016) whereas when caregivers are queried by proxy, they report significantly lower QoL for the autistic individual (Sandercock et al., 2020). This disparity of perception references an ableist lens. When people without disabilities measure QoL for those with disabilities they apply a value that places the QoL higher for an individual simply by the absence of disability (Bogart & Dunn, 2019).
Without careful planning behavior analysts can get caught in a reductionist framework when designing and delivering intervention. Indeed, the esteemed scholar Dr. Allan Poling (2010)challenged us in his behavior analyst article that stated “JABA articles are not focused on directly helping people, but rather on determining whether the same relations between environmental inputs and behavioral outputs demonstrated in Journal of Experimental Analysis of Behavior studies hold in people with special needs.” Although this challenge offered by Dr. Poling was to the research community the same can be said to the applied side of the house in behavior analysis. Are treatment protocols truly addressing issues that promote QoL? Are autistic adults emerging from intervention professing a high perception of their QoL?
Although QoL is measured by an individual’s perception, there are some outcomes including employment, literacy, and social connectedness that are generally accepted as impacting QoL for most adults. Intervention utilizing behavior analysis can have an impact on all these areas and more. But most importantly we must be asking the autistic adults what is important to them, how do they define their QoL and what intervention do they desire to increase their QoL? These answers should be incorporated into any intervention plan.
Skill acquisition and graphs showing higher rates of acquisition and performance are only meaningful if the skills being acquired and measured are meaningful. Periodically utilizing a QoL measure can assess whether those skills being acquired are truly improving “individuals’ perception of their position in life.” Take a minute to become familiar with the current QoL tools, especially the ones designed specifically for autistics. Determine how these QoL tools might be best integrated into your practice.
Bogart, K. R., & Dunn, D. S. (2019). Ableism Special Issue Introduction. Journal of Social Issues, 75(3), 650–664.
Graham Holmes, L., Zampella, C. , Clements,C., McCleery, J.., Maddox, B., Parish-Morris. J., Udhnani, M., Schultz, R., Miller, J. (2020) A Lifespan Approach to Patient-Reported Outcomes and Quality of Life for People on the Autism Spectrum. Autism Research, 13(6), 970-987
Hong, J., Bishop-Fitzpatrick, L., Smith, L., Greenberg, J., & Mailick, M. (2016). Factors Associated with Subjective Quality of Life of Adults with Autism Spectrum Disorder: Self-Report Versus Maternal Reports. Journal of Autism & Developmental Disorders, 46(4), 1368–1378.
Klinger, L. G., Klinger, M. R., Mussey, J. L., Thomas, S. P., Powell, P. S. (2015, May). Correlates of middle adult outcome: A follow-up study of children diagnosed with ASD from 1970-1999 [Conference session]. International Meeting for Autism Research, Salt Lake City, UT, United States.
Kuyken, W., Orley, J., Power, M., Herrman, H., Schofield, H., Murphy, B., Metelko, Z., Szabo, S., Pibernikikanovic, M., Quemada, N., Caria, A., Rajkumar, S., Kumar, S., Saxena, S., Baron, D., Amir, M., Tazaki, M., Noji, A., Vanheck, G., … Vandam, F. (1995). The World Health Organization Quality of Live assessment (WHOQOL): Position paper from the World Health organization. Social Science & Medicine, 41(10), 1403-1409.
McConachie, H., Mason, D., Parr, J. R., Garland, D., Wilson, C., & Rodgers, J. (2018). Enhancing the Validity of a Quality of Life Measure for Autistic People. Journal of autism and developmental disorders, 48(5), 1596–1611.
Poling A. (2010). Looking to the future: will behavior analysis survive and prosper?. The Behavior analyst, 33(1), 7–17.
Saldana, D., Alvarez, R. M., Lobaton, S., Lopez, A. M., Moreno, M., & Rojano, M. (2009). Objective and subjective quality of life in adults with autism spectrum disorders in southern Spain. Autism, 13(3), 303– 316.
Sandercock, R. K., Lamarche, E. M., Klinger, M. R., & Klinger, L. G. (2020). Assessing the convergence of self-report and informant measures for adults with autism spectrum disorder. Autism: The International Journal of Research & Practice, 24(8), 2256–2268.
Schalock, R. L., Hoffman, K., Keith, K. D. (1993). Quality of Life Questionnaire. International Diagnostic Systems.
Skevington, S. M., Lotfy, M., & O’Connell, K. A. (2004). The World Health Organization’s WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial. A Report from the WHOQOL Group. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation, 13(2), 299–310.
van Heijst, B., & Geurts, H. M. (2015). Quality of life in autism across the lifespan: a meta-analysis. Autism, 19(2), 158–167.
White, K., Flanagan, T. D., & Nadig, A. (2018). Examining the Relationship Between Self-Determination and Quality of Life in Young Adults with Autism Spectrum Disorder. Journal of Developmental & Physical Disabilities, 30(6), 735–754.