Historically, measuring outcomes in autism spectrum disorder (ASD) focused specific behaviors. More than a dozen scales and measures exist to gauge these outward behaviors: examples include the Aberrant Behavior Checklist (ABC), the Social Responsiveness Scale (SRS) and the Clinical Global Impression (CGI) rating scale.
Almost none of these, however, provide a good tool for assessing overall wellbeing, neither for autistic individuals, nor for their families. Yet, wellbeing may be one of the most important outcome measures for ASD care. Wellbeing reaches beyond the typical measures of outward behaviors and instead focuses on happiness, self-efficacy and self-determination that all individuals, regardless of their abilities or disabilities, can achieve.
Why Wellbeing?
Wellbeing is defined as the measure of a person’s overall happiness, satisfaction with life and positive outlook on life. As an outcome measure, it can be used both moment-to-moment and over time. Plus, wellbeing is a measurable umbrella outcome that carries across the highly diverse ASD population – across levels of abilities, social circumstances, family dynamics, cognitive abilities, mental health and much more.
Wellbeing also better identifies progress in areas that can make a lifetime impact on an individual and their family, rather than short term goals that may not matter to the person or their family. After all, does increasing eye contact always increase overall happiness? Does reducing repetitive behaviors such as rocking or hand-flapping indicate better satisfaction with life, especially when these might be self-soothing behaviors? Does it really help an individual’s wellbeing to try to make them minimize or hide their autism or disability?
Wellbeing is also closely intertwined with another key aspect of treatment or program outcomes – self-determination, which is the ability for individuals and families to choose their own path. Research has found self-determination is significantly associated with quality of life in autistic adults.[1] Research has also shown services and support provide more natural opportunities for acquiring and exercising self-determination skills are needed to promote quality of life for autistic adults.[2]
What About Goal Attainment?
The ASD population is highly diverse, which makes it difficult to compare apples to apples across the population – an important characteristic of outcome measures. And unless providers use the exact same curriculum, goals mastery can be very subjective, another potential challenge as a standard outcome measure.
Goal attainment is a valuable tool for building an individual’s plan in applied behavioral analysis (ABA) or other interventions and for supporting and gauging that individual’s growth and development. But it isn’t necessarily the gold standard in outcomes, nor does it serve as a population-level measure indicating how well an individual lives a happy and satisfied life as defined by them.
The Catalight Approach
To offer a well-rounded set of measures, Catalight researchers developed Wellbeing Scales, based on ten years of real-world ASD care data. Rolled out to the Catalight provider network in August 2022, there are three versions of the scales: one for youth, one for adults and one for families.
Catalight was committed to keeping the scales succinct; other measures have as many as 80 questions, creating unnecessary complexity for individuals and their families. Catalight’s Wellbeing Scales have 15 questions and take five minutes or less to complete. The scales measure three dimensions of wellbeing: self-determination, relationships and the ability to self-manage or manage the family.
The other key element of wellbeing as an outcome measure is it helps providers keep the big picture in mind—every intervention should support client and family wellbeing while delivering positive outcomes with quality of care, rather than quantity of care. Catalight is committed to value-based care that drives wellbeing while lowering costs.
Want to Learn More? Explore Catalight’s modalities of care and see how Catalight supports people with ASD and their families through innovative practices and working with providers to offer individualized, person-centered care focused on overall wellbeing.
[1] Examining the Relationship Between Self-Determination and Quality of Life in Young Adults with Autism Spectrum Disorder
[2] The experiences of adults with autism spectrum disorder: Self-determination and quality of life
