Ensuring my child with autism has a high quality of life is very important for our family. Her current therapy focuses on reducing interfering behaviors and building skills. Even with this progress, I find myself questioning whether these changes actually address her happiness and day-to-day experience. How can I tell if these supports are truly improving her overall quality of life?

Answered by Kristina Gasiewski, MOT, MEd, OTR/L, BCBA
Melmark

quality of life as an outcome measure

Photographed by Vitaly Gariev (pexels.com)

Thank you for asking this important question. Many parents wonder whether progress in therapy actually enhances their child’s happiness and day-to-day experiences, or whether intervention may be too focused on goals and skill development. It’s encouraging that your child is making progress in reducing interfering behaviors and building important skills. While these outcomes remain important, they do not always tell us whether those changes are improving your child’s daily life, supporting meaningful participation for your family, or contributing to a better overall quality of life (QoL).

This is where the concept of QoL becomes especially helpful in answering your question. In addition to whether a child is learning new skills or reducing challenging behaviors, QoL also includes whether they are happy, comfortable, able to participate in preferred activities, build relationships, make choices, and enjoy daily life (Schalock, 2004). Different professionals involved with the treatment plan may look at QoL in different ways, but it is often understood through both observation and conversations with the people who know the child best, including family members and caregivers.

Within applied behavior analysis, this perspective aligns with the concept of social validity. This is the idea that intervention goals and outcomes should be meaningful and valuable to the individual and their family (Vollmer & Pendergrass, 2026; Wolf, 1978). For families, this may look like noticing that a child is better able to participate in family routines, communicate wants and needs more effectively, enjoy outings with less stress, develop greater independence, or engage more comfortably in school or community activities. Parents may also notice improvements in their child’s comfort, confidence, or ability to connect with others. As a result, contemporary behavioral approaches increasingly prioritize goals such as participation, independence, and engagement in everyday activities (Baiden et al., 2025; Carr et al., 2002; Simpson et al., 2024).

So how can you tell if therapy is truly improving your child’s quality of life? One way is to begin by asking a few broad questions:

    • Does the intervention help your child participate more fully in daily routines?
    • Are they able to connect with family members, peers, or their community in meaningful ways?
    • Do they seem more comfortable, engaged, or interested in what is happening around them?
    • Does your child seem happier or more confident?
    • Are they able to communicate their preferences, needs, and interests more effectively?

Because QoL is often reflected through everyday experiences and observations, it can also be helpful to talk with your child’s providers about what changes they expect to see outside of therapy sessions, how goals are selected and updated, and how those outcomes are being evaluated. Families may benefit from discussing which behaviors or skills might indicate progress in daily life and how those changes can be observed across settings and routines. Some broad questions can include:

    • How can goals or concerns that reflect what is important and useful to your child and family be included?
    • How will the benefits of therapy be noticeable outside of sessions?
    • What changes would be noticeable to others?
    • Is your child developing skills that will support long-term participation and independence? In what ways?

Importantly, improvements in quality of life do not always occur at the same pace as improvements measured during therapy sessions. A child may demonstrate progress on specific goals or data charts while still experiencing difficulties participating in daily routines, forming relationships, communicating preferences, or using skills across settings. For this reason, it is important to consider not only whether skills are improving, but also whether those gains are leading to meaningful changes in everyday life.

Interventions that support communication, shared leisure activities (e.g., playing games with family members, participating in recreational programs, or engaging in hobbies with peers), and community participation can help individuals build relationships, express preferences, and take part in meaningful everyday experiences (Felce & Perry, 1995). Social engagement is an especially important part of QoL, as relationships and shared experiences are closely tied to happiness and a sense of belonging. You might notice your child spending more time near others, showing interest in social activities, or expressing themselves more effectively.

Another way to evaluate progress is by looking at autonomy and dignity. Effective services should help individuals make choices, express preferences, assert themselves, and exercise some control over aspects of their daily lives whenever possible. This may include choosing activities or helping shape daily routines. Encouraging autonomy not only builds practical life skills but also respects the individuality and rights of each person (Verdugo & Schalock, 2024; White et al., 2023). Even small increases in choice-making can be meaningful indicators that your child is learning the skills to gain more control over their daily life.

At Melmark and similar organizations, there is an increasing emphasis on using QoL as an indicator of effective intervention. In addition to addressing skill development and behaviors that may interfere with learning or safety, clinicians also consider how supports affect broader outcomes such as social participation, personal choice, and community involvement (Tincani et al., 2025). Through interdisciplinary collaboration, careful data collection, and ongoing program evaluation, providers aim to ensure that services promote not only skill development but also dignity, independence, and participation in everyday life (Bowman et al., 2021).

Research conducted by clinicians affiliated with Melmark have also highlighted the value of integrating compassionate care, trauma-informed practices, and data-based decision making when supporting individuals with intellectual and developmental disabilities (Bird et al., 2022; Luiselli et al., 2024). In practice, this involves looking beyond whether a skill was completed correctly and considering how the individual experiences the intervention itself. For example, compassionate care may involve building trusting relationships, honoring communication attempts, and recognizing signs of stress or discomfort during therapy. Trauma-informed approaches emphasize creating environments in which individuals feel safe, supported, and understood through predictable routines, individualized supports, and efforts to reduce unnecessary stress. Data-based decision making helps clinicians evaluate whether interventions are improving everyday experiences and outcomes. Melmark’s clinical and research efforts reflect the same guiding questions you are asking as a parent. They focus on whether progress is truly translating into improved day-to-day experiences and better overall QoL.

Ultimately, your question is exactly the right one to be asking. While data on skills and behavior are important, they are only part of the picture. Looking at your child’s engagement, relationships, comfort, ability to express choices, and overall enjoyment of daily activities can provide valuable insight into whether therapy is truly improving their day-to-day life.

Whenever possible, it is also important to include the child’s own perspective. For children who can communicate preferences directly, families and providers can ask about the activities they enjoy, whether they feel comfortable during therapy, and what goals or interests they would like incorporated into treatment. Children who communicate in other ways, their preferences and enjoyment may be observed through behavior, interest in activities, and willingness to participate.

In some cases, providers may also use formal assessment tools to help evaluate QoL and related outcomes. Discussing how those measures compare with family observations may provide additional insight into whether supports are translating into meaningful improvements across daily settings. By considering both measurable progress and meaningful day-to-day experiences, families and providers can better determine whether supports are helping your child live a more fulfilling and enjoyable life.

References:

Baiden, K. M. P., Williams, Z. J., Schuck, R. K., Dwyer, P., & Wang, M. (2025). The social validity of behavioral interventions: Seeking input from autistic adults. Journal of Autism and Developmental Disorders, 55(4), 1172–1186. https://doi.org/10.1007/s10803-02406297-3

Bird, F., Shlesinger, A., Duhanyan, K., & Luiselli, J. K. (2022). Data recording of seizures in children with autism spectrum disorder: Description and social validation of computer assisted measurement. International Journal of Developmental Disabilities, 70(4), 625-631. https://doi.org/10.1080/20473869.2022.2123200

Bowman, K. S., Suarez, V. D., & Weiss, M. J. (2021). Standards for interprofessional collaboration in the treatment of individuals with autism. Behavior Analysis in Practice, 14(4), 1191–1208. https://doi.org/10.1007/s40617-021-00560-0

Carr, E. G., Dunlap, G., Horner, R. H., Koegel, R. L., Turnbull, A. P., Sailor, W., Anderson, J., Albin, R. W., Koegel, L. K., & Fox, L. (2002). Positive behavior support: Evolution of an applied science. Journal of Positive Behavior Interventions, 4(1), 4–16. https://doi.org/10.1177/109830070200400102

Felce, D., & Perry, J. (1995). Quality of life: Its definition and measurement. Research in Developmental Disabilities, 16(1), 51–74. https://doi.org/10.1016/0891-4222(94)00028-8

Luiselli, J. K., Bird, F. L., Harper, J. M., Ruane, J., & Weiss, M. J. (2025). Trauma-informed care of persons with intellectual and developmental disabilities: A pilot survey of board certified behavior analysts at a human services organization. Behavior Analysis in Practice, 18, 234–243. https://doi.org/10.1007/s40617-024-00972-8

Schalock, R. L. (2004). The concept of quality of life: What we know and do not know. Journal of Intellectual Disability Research, 48(3), 203–216. https://doi.org/10.1111/j.1365-2788.2003.00558.x

Simpson, K., Paynter, J., Westerveld, M., Van der Meer, L., Patrick, L., Hogg, G., Heussler, H., Heyworth, M., Gable, A., Chanddran, H. S., Bowen, R., & Adams, D. (2024). Time to change how we measure quality of life and well-being in autism: A systematic review. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s40489-024-00440-7

Tincani, M., Brodhead, M.T. & Dowdy, A. (2025) ABA promotes autonomy and choice of people with intellectual and developmental disabilities. Journal of Developmental and Physical Disabilities, 37, 383–409. https://doi.org/10.1007/s10882-024-09949-5

Verdugo, M. Á., & Schalock, R. L. (2024). From a concept to a theory: The six eras of quality of life research and application. Research in Developmental Disabilities, 150, 104763. https://doi.org/10.1016/j.ridd.2024.104763

Vollmer, T. R., & Pendergrass, J. A. (2025). Social validity and contemporary applied behavior analysis. Perspectives on behavior Science, 48(3), 519–527. https://doi.org/10.1007/s40614-025-00452-6

Wolf, M. M. (1978). Social validity: The case for subjective measurement or how applied behavior analysis is finding its heart. Journal of Applied Behavior Analysis, 11(2), 203-214. https://doi.org/10.1901/jaba.1978.11-203

White, S. W., Schall, C., Santos, J. D., Maddox, B. B., Hillier, A., Klinger, L., & Pugliese, C. (2023). Promoting quality of life: suggestions for mental health care providers working with young autistic adults. Autism in Adulthood, 5(4), 347–355. https://doi.org/10.1089/aut.2022.0106

Relevant Melmark Publications:

Bird, F. L., Maguire, H., Harper, J. M., Gardner, R. M., Shlesinger, A., & Luiselli, J. K. (2023). Clinical systems and programming in human services organizations: EnvisionSMART™: A Melmark model of administration and operation. Academic Press.

Luiselli, J. K., Bird, F. L., Maguire, H., & Gardner, R. M. (2026). Applied behavior analysis and quality of life. In C. Woodard & N. N. Singh (Eds.), Clinical guide to applied behavior analysis: Expanding its scope and practice. Springer.

Luiselli, J. K., Driscoll, K., Weiss, M. J., Duffy, A., Bird, F., Harper, J., & Maguire. (2026). Quality of life for persons with intellectual disability: Definition and assessment perceptions among behavioral service providers. Advances in Neurodevelopmental Disorders. https://doi.org/10.1007/s41252-026-00486-0

McKenna, K. (2023). Melmark: A commitment to best possible outcomes. Science in Autism Treatment, 20(5).

Maguire, H., Harper, J. M., Gardner, R. M., & Luiselli, J. K. (2022). Behavioral training and performance management of human services organization care providers during the COVID19 pandemic. Advances in Neurodevelopmental Disorders, 6(3), 340–348. https://doi.org/10.1007/s41252-021-00234-6

Sturmey, P., Lang, R., & Luiselli, J. K., (Eds.) (2025). Lifespan treatment for autistic individuals: A guide to evidence-based practices; online edn, Oxford Academic. https://doi.org/10.1093/oso/9780197635841.001.0001

References for this article:

Gasiewski, K. (2026). Clinical Corner: Quality of life as an outcome measure. Science in Autism Treatment, 23(7).

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