Meaning in Measurement: Evaluating Young Autistic Adults' Active Engagement and Expressed Interest in Quality-of-Life Goals

Abstract

The need for support programs and meaningful measurement of outcomes with autistic adults is growing. To date, success in autism intervention has been defined based on changes in discretely defined, observable behaviors with limited consideration of the person's experience, motivations, or the complex contexts in which these skills are used. Behavioral skill-building interventions are effective at increasing or decreasing specific behaviors, but a purely behavioral focus is not enough for meaningful improvements in adult quality of life (QoL). To reflect real-life impact, intervention and measurement must go beyond quantitative estimates of changes in skills regardless of context of use and focus on enhancing and evaluating functional outcomes and adult QoL that includes active engagement with the adult and provides rigor in qualitative evaluation. This article reports on efforts to assess active engagement of verbally fluent young autistic adults in a supported university-based residential pilot program built around self-set wellness goals for healthy, engaged, responsible, and empowered adult living. Program evaluation used an exploratory process for evaluating QoL learning, while also being open to how future work can discern participant meanings in measurement. The pilot used a mixed-methods approach to measure entry skills and interests, codetermine personal wellness goals, inform program content with participants, and measure QoL learning in terms of active engagement, expressed interest, and changes in self-appraisal of competence, confidence, and identity. Participants' QoL learning, replication of QoL learning measurement methods, and further exploration of strategies to put participant meanings in QoL learning measurement are discussed.

Lay summary

Why was this study done?

This study piloted a measurement strategy for deciding what to measure and support in real-world contexts of independent living and on-campus experiences in a 3-week residential program for young autistic adults.

What was the purpose of this study?

The study aimed to measure and support autistic adults' quality of life (QoL) learning in terms of the extent to which pursuing self-set wellness goals, with supports, positively impacted autistic adults' active engagement (e.g., participation in wellness activities), and expressed interest (e.g., willingness to participate).

Why was this program developed?

The program was developed because more young adults on the spectrum are aging into adulthood without personalized, respectful, and meaningful supports to promote engaged adult living. We wanted to build on our experience and feedback from autistic adults, family, and partners who have engaged in weekly social engagement groups on a university campus and called for more comprehensive transition programs.

What did the program do?

The project was a pilot of an on-campus program aimed at facilitating personally meaningful improvements in QoL through empowering autistic adults to act on their personal motivations, interests, and goals. It also emphasized learning through experiences in real-life contexts, in collaboration with other participants, campus resources, community members, and program staff.

How did the researchers evaluate the new program?

The program team used both quantitative and qualitative methods. Quantitative methods included standard self-report tools that autistic adults used to rate their safety needs, adult self-direction skills, autism-related self-concept, priority of self-set wellness goals, and confidence in abilities to achieve and learn more about one's own wellness goals. Predetermined qualitative methods included analysis of themes from participants' narrative data from their wellness interviews with participants and open-response items from self-report tools. The program was also responsive through a preprogram wellness interview with parents, staff's field notes about of participants' behaviors, conversational interactions with participants, and team discussions. Researchers contextualized and synthesized the data into narrative case studies about each participant's wellness journey.

What were the early findings and what do they add to what was already known?

Results showed that the program was able to facilitate participants' QoL learning in personal wellness goals in collaboration with campus and community resources. Participants expressed meaningful changes in their expressed interests, active engagement, and self-concept through participating in this brief residential on-campus program.

What are potential weaknesses of this pilot?

Weaknesses included a short time period of 3 weeks, a small participant count of 5, and the resource-intense supports needed for the program.

What are the next steps?

The next steps are to adjust the program based on participant feedback and pursue creation of a multiyear program to continue piloting the measurement and support strategies for facilitating autistic adults' active wellness engagement and self-determined independent living.

How will these findings and this work help autistic adults now or in the future?

This work informs future wellness interventions for measuring and supporting autistic adults' efforts to self-determine meaningful changes to their QoL.

Introduction

More young adolescents on the autism spectrum age into adulthood than ever before,^1,2 and an increasing number of families find the lack of a support “home” in adulthood to be a major challenge.³ The transition ages of 18 and 22 years mark when rights, responsibilities, and supports change dramatically based on both policies and laws. Many autistic adults face this “supports cliff,” remaining at home with little meaningful engagement in the community and few adult-appropriate supports.^2–4 Despite spending the majority of life in adulthood, most attention, research, and supports have been for childhood autism.^2,5 Our support programs must also mature and put as much, if not more, attention to quality of life (QoL) with adults on the spectrum.^4–7 A shift in the focus to QoL brings complex challenges in how to achieve meaningful results and how to measure “success” as it relates to positive impact in a person's daily life.^5–8

In this article, we consider the issue of measurement that goes beyond skills-based assessments aimed at achieving precision and reliability in the quantification of discrete behaviors prevalent in childhood intervention, toward a mixed-methods approach emphasizing qualitative evaluation of adult participant engagement in personal wellness goals within intentional supportive environments.^7,9,10 We focus on a pilot program with young verbally able autistic adults as a vehicle to conceptualize, implement, and evaluate efforts to impact QoL. Of particular importance is the use of a qualitative assessment approach that respectfully and collaboratively assesses active engagement, expressed interest, and changes in self-assessment of competence, confidence, and autism identify with autistic adults as they engage in a program aimed at facilitating QoL-related goals.^7,11–13

Historically, autism has been seen primarily as a childhood disability with a focus on the person's deficits, problems, and limitations needing to be “fixed” by professional expertise.¹⁴ Recent social movements have fueled a paradigm shift to reframe autistic differences as valued and respected forms of neurodiversity with the autistic community exerting more influence on the nature of services and supports.^7,14,15 Despite these positive changes, there are few models for adult-appropriate supports that respect the interests, skills, needs, and experiences of the autistic adult, while responding to the demands, expectations, and available supports of a neurotypical world.^16,17 This is further complicated by autistic individuals' social communication difficulties, and sometimes their perspectives are not always easily discerned or understood by others.^16,18 Moreover, different worldviews often misalign with standards and expectations in the neurotypical world that are either not preferred or unimportant to the adults on the spectrum.^17,19 Self-determination in a socially constructed world of expectations and responsibilities is a major challenge for adult supports.^20–22

Research on autistic adults has primarily identified poor outcomes compared with adults with other developmental disabilities.^17,18,23,24 Efforts to capture QoL for autistic adults have used a quantitative approach with externally defined “normative” outcomes (e.g., employment, independent living) or on objective or observed indices (i.e., physical health markers).^25–29 Meanwhile, autistic first-person accounts of well-being as an indicator of QoL using methods commensurate with autistic adults' communication preferences and abilities are rare.^10,11,30 Other QoL work explores identifying autism-specific strengths and challenges and personally meaningful life satisfaction,^5,26–32 but evaluation of QoL-based support programs is limited.^12,33–37

Intervention approach and measurement

While applied behavior analysis (ABA) is the dominant intervention method for addressing challenging behaviors and building specific skills by manipulating discrete behaviors in controlled settings,^12,35 this approach of skill-building (Level 1, Fig. 1)¹² is not sufficient for impacting QoL with autistic adults. Risley differentiated discrete skill-building (Level 1) from daily contingency management (Level 2) and “life arrangement” (Level 3) (Fig. 1).¹² Accordingly, for Level 1, data-based evaluation is closely linked to the measurement of specific observable behaviors against predetermined standards with little participant choice-making. While intervention programs for children have often more restricted settings and goals, such models may not fit the varied and complex vicissitudes of adult lives^12,13 and have been seriously criticized by some in the autistic community.³⁸ Attention is needed to variation of abilities, potentials, and support needs in leading meaningful adult lives.^{7,9.15,39–41}

FIG. 1.

Visual of Risley's levels of behavioral intervention.¹²

Not all ABA-based interventions take a strict decontextualized approach. Positive behavior support (PBS) takes the principles of ABA to a broader level by assessing behaviors and (re)arranging the environment to maximize the fit (Level 2), although measurement still tends to focus on quantifiable behavior increases or decreases within a specified setting (e.g., classroom, home).^42–46 In an intersection of ABA, PBS, and developmental approaches, Naturalistic Developmental Behavioral Intervention (NDBI) focuses teaching on skills more relevant to everyday contexts by capitalizing on motivations and interests of the person within typical environments, such as school, home, and community (different aspects align at Levels 1–3).^47–50 We posit that a Level 3 unit of focus on “life arrangement” as primary in adulthood because it encourages active engagement of the person in specific contexts and considers the importance of the meaning behind the intervention and measurement inclusive of the person's experience.^21,22 For many adults on the spectrum, limited access to adult social, vocational, or leisure options limits their ability to continue to develop in those areas, often leading to isolation at home. To impact QoL, it is particularly important to engage adults toward self-determination with a balance of their own interests, safe and healthy choices, and accessible resources.^{2,7,13,17,20,22,32–34,37,51–53} Level 3 interventions intentionally embed within settings meant to expand access to adult-appropriate opportunities combined with supported practice of personally meaningful skills as part of environmental arrangement.¹²

While research has included self-determination and QoL self-report data,^21,22 little research exists on ways to measure and evaluate active engagement of autistic adults in learning to achieve their own self-set goals in real-world settings. Intervention programs with such commitment need evaluation processes that emphasize meaning-making with the person the program serves. In this sense, measurement is important for identifying feasible goals important to participants, achieving common understanding and effort toward working within the program, promoting participatory and transformational processes with stakeholders, and aligning and informing organizational and program values and practices. Whereas responsive evaluation capabilities can assess a dynamic process informed by participants' meanings, preordinate evaluation capabilities allow predetermined objectives for putting participant meanings in measurement.⁵⁴ One preordinate evaluation³⁶ aimed to establish a comprehensive program evaluation model for peer-supported adult programs in community-based university settings; however, direct engagement of participant experience and meanings within a supportive intervention was not part of the evaluation. Given the absence of person-centered QoL program evaluation models with both preordinate and responsive capabilities, we sought to use a measurement process that is not restricted to discrete skill gains as primary outcomes, yet able to engage and measure the qualitative experiences of participants. To this end, we applied the theory-and-domain-agnostic process of Analyze, Design, Develop, Implement, and Evaluate (ADDIE)^55,56 to measure and support QoL learning. ADDIE also allowed formative and summative evaluation of measurement strategies in the context of educational program development.

Objectives

The study's primary goals were both practical and aspirational in nature: Rather than merely test or build theory, it piloted a personally meaningful adult program with measurement-informed life arrangement to answer two core evaluation questions:

• (1) Can a QoL learning program positively impact participants' active engagement and expressed interest in a supported approach to wellness-oriented adult living?

• (i) If so, then how did they demonstrate QoL learning through active engagement and expressed interest while navigating real-life situations?

• (ii) How did the participants' self-appraisal of competence, confidence, and identity change while navigating real-life situations?

• (2) How can we document a replicable evaluation process that engages participant meanings, reflects participant experiences, and inspires future exploration of measurement-informed program practices?

Methods

We briefly describe the myLIFE on Campus Program (“Program”) as a wellness-oriented life arrangement platform for the evaluation of the participants' active engagement, expressed interest, and changes in self-appraisal of competence, confidence, and identity.

Participants

Five adults aged 20–25 years with a primary diagnosis of autism spectrum disorder (ASD) participated in the Program based on their prior engagement with Emory myLIFE Social Engagement Groups (Table 1; pseudonyms used). All ASD diagnoses were confirmed by clinician review of diagnostic evaluation by a qualified professional before program entry. All participants were able to communicate their needs and interests using verbal and written language, several were currently employed, and all lived with parent(s) who provide daily oversight and guidance over their lives. One participant had attended some college. The adults and their parents/caregivers all consented to participating in the pilot, and participants gave permission for parents as informants. In addition, university students participated as peers in some group activities or as facilitators of specific activities and topics based on their expertise (e.g., nursing students led daily health lessons). The Emory University Institutional Review Board reviewed and approved a protocol for data collection as described for this program.

Table 1.

Participant Descriptions in the myLIFE on Campus Program

Participant pseudonym	Gender	Age, years	Ethnicity	Living arrangement	Employment	Education	Age of diagnosis, years	Family Informant(s)
Alice	F	22	Black/African American	Lives with parents	Unemployed	High school diploma	19	Father
Harold	M	21	White/European American	Lives with parents	Unemployed	High school diploma; some college	8	Mother
Nick	M	20	Bi/multiracial	Lives with parents	Part-time with vocational rehabilitation support	High school diploma	5	Mother
Ridley	M	25	White/European American	Lives with parents	Part-time	High school diploma	8	Father
Suzanne	F	23	White/European American	Lives with parents	Part-time with vocational rehabilitation support	High school diploma	23	Father and mother

F, female; M, male.

myLIFE on Campus Program

Participants resided in two student residence hall apartments with three males in one room and two females in another room over the course of 3 weeks. A graduate student (M.R.) resided in a nearby apartment. Several values served as guiding principles, permeating all stages of the program and were considered part of Level 3 Life Arrangement: safety, wellness, respect, inclusion, and choices.³⁷ The participants engaged in activities within their apartments, across campus, and in the local community with varying levels of support depending on the person, activity, and setting. Residential living included group activities about house rules, safety plans, hygiene routines, housekeeping, meal preparation, and so on. Multiple university facilities and departments provided program content and support (e.g., police, dining, career services, museum, nursing), and community organizations and service providers taught workshops on topics such as career development, credit and finances, first-aid safety, and art. Participants were issued Emory student IDs and had access to all campus facilities and services. They did not attend academic classes. Same-age peers and supportive community partners formed an integral part of opportunities to practice social and community living skills.

Intervention approach

We operationalized intervention as measurement-informed supports for participants' QoL learning in self-set wellness goals. We adapted a strength-based,⁵⁷ person-centered evidence-based process^41,58 around participants' personal values and interests to increase motivation, while also considering support needs for navigating real-life situations. Personal coaching and direct instruction were used to build knowledge and teach skills. Individualized reinforcement and prompting strategies were employed to further strengthen progress toward goals and redirect challenging behaviors (Levels 1 and 2) drawing from the literature on incidental teaching⁴⁷ and NDBI.^49,50 Efforts to merge a behavioral approach with a heavy focus on adult environmental arrangement and direct engagement of each person in learning experiences were intended to create a model that could impact QoL for each person (Levels 2 and 3).

Evaluation process

To answer our core question, we used a mixed-methods approach to assessing participants' active engagement and expressed interest, both before and after the program (Fig. 2).^55,59 We defined active engagement as active participation, self-report, identifying and/or navigating real-life situations, and self-appraisals about skills. We defined expressed interest as evidence of the person's willingness to participate in the program by sharing personal interests, engaging in personal planning, trying to understand or meet behavioral expectations, and changes or stabilities in self-perceptions or attitudes toward oneself. We operationalized active engagement and expressed interest during QoL learning in terms of closed-responses and open-responses to selected self-report instruments and narrative responses to open-ended interview questions. In addition to responsive supports during the program, we performed thematic analysis of open-response items and wellness interview narratives. We also configured different narrative wholes⁶⁰ about two participants' QoL learning processes and outcomes as evidenced in open-response, narrative, and close-response data.

FIG. 2.

Evaluation process for engaging meaning in measurement in an adult wellness quality-of-life program.

Data collection

Data collection included participant- and parent-completed quantitative rating scales of The Transition Planning Inventory (TPI) Student Form⁶¹; The Safety and Self-Direction Subscales of the Adaptive Behavior Assessment System, third edition (ABAS-3)⁶²; and the Autism Spectrum Identity Scale (ASIS)³¹ to elicit self-ratings of specific safety and adaptive living competencies, and ratings of autism-related identity at program entry and exit. This information informed both the overall program goals (i.e., importance of safety lessons) and individualized supports (i.e., how independent a participant might be navigating campus or caring for hygiene needs). Given the brief duration of the program, it was not expected that significant quantitative changes would be evident in these assessments; however, the changes in domain scores and specific responses were characterized as increases, decreases, or no change and used to inform narrative configurations about participants' QoL learning in each primary outcome of the study.

Qualitative measurement included open-response items of the TPI and semi-structured myLIFE Wellness Goal Interviews of each participant (and at least one of their parents, interviewed separately from participants) about seven Wellness Domains^63,64 by asking what was going well and what was something they would like to improve for each domain. Wellness domain terms were undefined to allow participant meanings into the wellness goal measurement. Goals were defined through the participants' own narratives of desired improvements and summarized as goals by program staff. Participants reviewed and approved their goals (member checking)⁶⁵ and rated their competence in achieving their goals and confidence in learning more about their goals. They also ranked their Wellness Goals in order of personal importance, and their top 4 (Table 2) were integrated into their program plan with facilitated personal planning, lessons, activities, and engagement related to the goals. Each member also participated in a postprogram interview to evaluate their own progress, rank their competence and confidence, and identify future plans.

Table 2.

Each Participant's Top 4 Wellness Areas and Goals

Participant	Wellness goals
	#1	#2	#3	#4
Alice	Physical wellness	Intellectual wellness	Financial wellness	Emotional wellness
	Walk more outside, exercise, and try not to take naps during the day.	Work on keeping my room clean.	Manage my budget, and save money for a bio-active for my leopard gecko.	Work on controlling my emotions, trying not to get upset, and to calm down.
Harold	Financial wellness	Intellectual wellness	Physical wellness	Spiritual wellness
	Really my only problem in regards to that is income. I need some way to get money.	Improving interview skills. (Used to treat them like questionnaires but that's not quite right so wants to learn more about how to appropriately do them.)	I'd like to get into the habit of working out fairly often because I've been slowly, slowly losing weight, occasionally gain it back and I mostly just lay around all day.	I need to do better about praying for people and just praying in general and reading my bible. I need to do more in general like be more active in regards to having relationships with other people. Not even just spreading the word of god but actually spreading happiness in general; being kind and helping people.
Nick	Physical wellness	Emotional wellness	Social wellness	Financial wellness
	Maintain or lose weight.	Recognizing less obvious/subtle emotions in others.	Making step from acquaintance to a friend. Would like more friends.	How to shop efficiently while being hungry.
Ridley	Financial wellness	Social wellness	Emotional wellness	Environmental wellness
	Work on getting another job.	Work on making phone calls, and starting social interactions in various settings.	Work on better ways to deal with emotions instead of bottle them up until I am alone.	Work on responding to being in large crowds.
Suzanne	Emotional wellness	Intellectual wellness	Social wellness	Financial wellness
	Defining all the other emotions out there. I need help identifying them and finding out when I feel those different emotions. Sometimes peoples body language can be very confusing. I also have a hard time reading others emotions, not just my own. I am not always sure when to leave people alone.	I would like to be more aware of what is happening in the autism community. I need to do more research on autism and what is changing in that world.	Interacting with people who don't have the same challenges as me, or even those on the other side of the spectrum. It is hard for me to relate to those people. I wish I could advocate for myself to other's who are both similar and dissimilar to me.	I come first and I need to remember that. Sometimes I buy stuff for my dolls instead of myself. I need to figure out what is more important. Their needs or my needs. I could set aside money for medical needs (i.e., hearing aid batteries).

Additional qualitative data were collected throughout the Program to inform adaptive supports. Participants were asked to document things that were important to them and provide brief assessments following activities and more in-depth reflective journals two times per week. Program staff observed engagement during activities and made daily notes. Staff communicated electronically or in team meetings to review participant progress and make daily adjustments. All participants, parents, and staff engaged in a group debrief session reflecting on their experiences postprogram.

Quantitative changes and comparative item analysis of closed-response assessments

Instruments with a limited range of closed responses included the ASIS-1, TPI, ABAS-3 Subscales and the myLIFE Wellness Interview confidence ratings. Participants completed them within 1 week prior and within the last day of the Program. All participant data were compiled for each domain or subscale, with changes summarized with increases in self-appraisal/report reflecting desirable movements toward higher confidence, competence, or self-concept.⁶⁶ Next, ratings for each item (e.g., “I can take care of physical problems that arise”) were compared from program entry to exit, and patterns of change were documented for domains (e.g., employment, daily living) and specific skills (“I know how to get a job”). These changes informed narrative configurations about QoL learning as active engagements and expressed interest.

Thematic analysis

To deepen understanding of participant meanings about their interests, experiences, and self-appraisals, we performed collaborative coding in thematic analysis⁶⁷ of their narrative data from the wellness interviews and open-response items of the TPI instrument. Our thematic analysis combined data-driven inductive coding and theory-driven deductive coding to synthesize Participant-level and Group-level themes⁶⁸ (Table 3).

Table 3.

Combining Data-Driven and Theory-Driven Thematic Analysis Methods

Method	Description of the method's process
1. Create codebook	Create a three-column codebook in a word document including all TPI-Student61 and wellness interview open-response data.
2. Initial inductive coding	Perform initial read-through and create data-driven codes as an inductive process.
3. Apply deductive codes	Perform another read-through to apply codes deduced from the study theory and purpose, creating notes about how the codes about outcome constructs apply to the data and data-driven codes.
4. Participant-level thematic collating and reviewing	Create a table, organized by deductive codes about outcome constructs, of each participant's data-driven codes for review.
5. Participant-level thematic naming and description	In another table, synthesize and review participant-specific themes and subthemes, organized by the deductive codes about outcome constructs.
6. Applying top 4 wellness goal area codes based on the participant's self-set goals	Then, using this participant's self-set wellness goals, apply top 4 wellness goal area codes to participant-level themes demonstrating QoL learning as active participation or expressed interest in those wellness goal areas. These function as participant-generated deductive codes, helping to inform narrative configuration about a participant's wellness journey of QoL learning.
7. Group-level thematic analysis	Synthesize group-level themes from all participants' themes, name and define them, and organize by outcome construct into a table of themes and subthemes to help answer research questions.

QoL, quality of life; TPI, Transition Planning Inventory.

Narrative configuration of wellness journeys

We used narrative configuration of an analytical whole⁶⁰ to configure case study narratives that synthesize richer description of findings about individual QoL learning from analysis of their open-response and closed-response data. We shared a narrative of both verbal summaries and pictures with each participant and requested feedback on summary accuracy (member checking).⁶⁵

Results

Overall program evaluation

Overall, pilot program objectives were achieved; thematic analysis and narrative configurations showed how each participant demonstrated QoL learning in all constructs of active engagements and expressed interest. Before starting the Program, all group members depended significantly on their parents to guide their daily living practices. Parents reported that they struggled to envision their adult child living independently and expressed concerns living on campus and having appropriate safety judgment. At the end of the Program, all participants, parents, and the support team expressed a desire and showed commensurate behaviors of wanting the program to continue. All group members indicated that they wanted to participate in a longer term version of the program. Parents and families were impressed with what their adult child accomplished, expressed confidence and trust in the Emory Autism Center (EAC) Team, and asked for a longer term program. Program team members overwhelmingly reported sparks of engagement in each participant who they had not seen before and noted that a longer supported program had the potential to change the trajectory of each participants' life. Each participant expressed their individual interests reflected in their top 4 wellness goals (Table 2).

Changes in self-ratings

All participant data were compiled, and pre- and post-score changes for each domain or subscale were compiled and changes (increase, decrease, or no change) summarized (Table 4). Quantitative assessments of change indicate variability across participants, scales, and subscales making overall conclusions about changes in adult-appropriate adaptive living skills impossible. Further comparative analyses of the item-level patterns (detail available upon request) revealed more individualized meaning to the response patterns. For example, Harold showed increases in most areas of daily living and self-concept; however, item pattern analysis revealed increases in short-term (e.g., working on an activity for 15 minutes without reminders), but not long-term self-direction (e.g., “plans ahead to allow enough time to complete big projects”). For Suzanne, her pattern of changes was more complex and reflected negative self-appraisals of confidence and ability to learn but increases in changeability and in daily living skills. The item analyses were further contextualized and reported in the wellness journeys reported below. Applying a qualitative analysis to these data helps inform specific targets for personalized support and provides insight into the person's experience.

Table 4.

myLIFE on Campus Participant Changes in Pre- and Post-Program Self-Ratings in Closed-Response Assessments

ASIS-131		TPI Student Form61		ABAS-362 select subscalesa		myLIFE on campus wellness interview self-confidence ratings
						Confidence in ability to learn		Confidence in ability to achieve
Alice
−0.2 NC −0.2 +0.6	Positive difference Changeability Context dependent Spectrum abilities	+3 +1 +3 NC NC +3 NC NC +4	Employment Education/training Daily living Leisure activities Community participation Health Self-determination Communication Interpersonal relationships	NC NC	Health and safety Self-direction	−1 +2 −3 +1 NC NC −1	Social Emotional Intellectual Physical Spiritual Environmental Financial	+2 −2 +1 NC −1 −1 +1	Social Emotional Intellectual Physical Spiritual Environmental Financial
Harold
+0.4 +0.2 +0.6 +0.2	Positive difference Changeability Context dependent Spectrum abilities	+6 +1 +5 +3 NC +3 +4 +2 +2	Employment Education/training Daily living Leisure activities Community participation Health Self-determination Communication Interpersonal relationships	+3 +3	Health and safety Self-direction	+1 +1 NC +2 NC −1 +1	Social Emotional Intellectual Physical Spiritual Environmental Financial	−1 NC +1 +3 −2 NC NC	Social Emotional Intellectual Physical Spiritual Environmental Financial
Nick
−1.2 NC −0.6 NC	Positive difference Changeability Context dependent Spectrum abilities	−3 −4 +8 NC −4 −1 −2 NC −1	Employment Education/training Daily living Leisure activities Community participation Health Self-determination Communication Interpersonal relationships	+3 +2	Health and safety Self-direction	+1 NC +4 −1 −1 NR −3	Social Emotional Intellectual Physical Spiritual Environmental Financial	−1 NC −1 −2 NR NC −1	Social Emotional Intellectual Physical Spiritual Environmental Financial
Ridley
NC −0.4 +0.2 NC	Positive difference Changeability Context dependent Spectrum abilities	+3 +9 +7 +1 +7 −2 +1 +1 −2	Employment Education/training Daily living Leisure activities Community participation Health Self-determination Communication Interpersonal relationships	+2 −1	Health and safety Self-direction	+2 −2 +1 NC NR NR NC	Social Emotional Intellectual Physical Spiritual Environmental Financial	NC −1 NC −1 NR +1 +1	Social Emotional Intellectual Physical Spiritual Environmental Financial
Suzanne
−0.4 +0.4 +0.8 −1.6	Positive difference Changeability Context dependent Spectrum abilities	−5 NC +4 +7 +8 +2 +1 −3 +4	Employment Education/training Daily living Leisure activities Community participation Health Self-determination Communication Interpersonal relationships	NC −1	Health and safety Self-direction	NC −1 −1 −3 NC NC +1	Social Emotional Intellectual Physical Spiritual Environmental Financial	−2 −2 −4 NC −2 −1 −1	Social Emotional Intellectual Physical Spiritual Environmental Financial

Domain or item scores were compared on the same pre- and post-assessment tools for each participant and the next difference summarized as an increase, decrease, or NC. Increases in self-appraisal/report that reflect desirable movements toward higher confidence, competence, or self-concept; decreases indicate movement away from desired outcomes per the assessment tool; and NC indicates the same pre- and post-self-rating.

^a Change in Scaled Scores.

ABAS-3, Adaptive Behavior Assessment System, third edition; ASIS, Autism Spectrum Identity Scale; NC, no change.

Thematic analysis

Themes common to all group members were identified and summarized (Table 5). A pattern from all themes was that all participants expressed narratives of being and planning to be a member of some kind of community where they can make efforts toward their own wellness goals with supports for making meaningful changes to their QoL. Results of themes specific to Harold and Suzanne are reported in Supplementary Table S1.

Table 5.

Group-Level Themes from Participant Open-Responses Organized by Primary Outcome Constructs

Outcome constructs	Definitions
Active engagement	Attending to and participating in present activity as evidenced within participant open-responses.
Identifying and/or navigating real-life challenges	Learning to select, analyze, and solve or adapt to events in one's lived experiences.
Group-level theme names	Group-level theme definitions
Identifying financial independence challenges:	All participants identified needs for a (higher) paying job, money management, transportation, and a long-term career along their paths to financial independence for a more independent adulthood.
Navigating social–emotional challenges in family dynamics:	Several participants identified challenges in using social–emotional skills (e.g., recognizing nonverbal cues or communication; self-regulation of emotions) in interactions or expectations in family life.
Navigating the impact of health conditions on active participation:	Several participants disclosed their own personal health conditions (e.g., depression; spina bifida; hearing difficulties) and identified, anticipated, and navigated the effects of them on a more physically and socially active lifestyle.
Identifying and navigating barriers to social engagement, to feelings of social connection, or to building social relationships:	All participants identified how their own unique personal factors (e.g., introversion) and own unique reactions to social environment factors (e.g., crowds) can make social situations challenging for them to navigate. All participants also identified not knowing how to initiate some kind of social interaction (e.g., phone calls; step from acquaintance to friend) as a challenge.
Self-appraisal	Judgments of confidence levels, competency levels, or frequency levels about skills, knowledge, or abilities.
Group-level theme names	Group-level theme definitions
Self-appraised improvements in social engagement, feelings of social connection, and building social relationships:	All participants expressed narratives of some kind of improvement in self-set personal wellness goals (in any of the seven wellness domains) specifically about social interactions, feelings of social connection, or building relationships, and noted related challenges they wish to navigate as practice or with supports.
Self-appraised efforts and choices as adaptive:	All participants self-appraised their own efforts as adaptive to either temptations (e.g., to stay indoors; to nap out of tiredness) or consequences of social interdependence (e.g., sleeping while others are loud; peer pressure about food choices) as they learned to make goal-oriented choices.
Active participation	Efforts and achievements during program activities, personal learning, or steps taken toward achieving personal goals.
Group-level theme names	Group-level theme definitions
Learning through personal wellness goal efforts:	All participants expressed narratives of actively participating in own top 4 wellness goal efforts in and outside of scheduled program events, including efforts to navigate the real-life challenges on which the goals were based.
Closer social connections with other participants:	All participants expressed narratives about some kind of self-appraised positive social connection (e.g., helped others be happier; was a good roommate; closer in connection; learned through being with others) to other participants.
Learning they like something new to them:	All participants expressed narratives about learning they liked a topic or activity new to them (e.g., yoga; taekwondo; leading a social engagement group activity; gardening on campus; new gym exercises) during the program.
Self-report	Disclosure of personal information or support needs for inspiring adaptive supports.
Group-level theme names	Group-level theme definitions
Disclosing health conditions and related support needs to program staff before and during the program:	Several participants disclosed personal health conditions (e.g., depression; spina bifida) and related support needs while navigating real-life situations and challenges during and outside the program's scheduled events.
Self-reported emerging support needs:	Emerging support needs are ones a participant identifies during the program in addition to the real-life challenges anticipated by their self-set wellness goals. All participants narrated about self-reporting emerging support needs (e.g., help feeling calm during storms; feeling overwhelmed; needing a break for alone time; making food choices; breaks from crowds) to program staff, who then helped support them.
Expressed interest	Voiced likings, wants, needs, QoL goals, or motivations as evidenced in participant open-responses.
Personal interests	Interests or hobbies a participant enters with or developed during the program.
Group-level theme names	Group-level theme definitions
Media consumption and creation for social communication, leisure, and personal learning:	All participants but one report using the Internet and computers or mobile smart phones for electronic social communication, accessing multimedia for entertainment or learning purposes, or to create media for personal hobby purposes or to aid personal decision making.
Desire to become more independent in adulthood:	All participants expressed having or developing desires for more financial, vocational, transportation, and social freedoms, as well as to practice toward living independently.
Desire for social connection and relationships:	All participants expressed narratives of entering the program wanting to build social relationships through working on social skills they identified as difficult for them.
Personal planning	Self-set goals or plans for future efforts based on one's interests and personal experiences before or during the program.
Group-level theme names	Group-level theme definitions
Planning to build social skills and relationships:	All participants expressed narratives of leaving the program having worked on social skills they identified as personally challenging and expressed plans to practice more with others outside the program.
Planning for financial and vocational futures:	All participants expressed narratives of planning to use newly identified money management skills (e.g., prioritizing personal needs; saving money; using an app to track spending) and newly identified personal career skills (e.g., job searching; resume building; social skills for interviewing; pursuing newly identified job or career opportunities) outside the program.
Expressed interest in participation in a longer supported residential program:	When asked a yes-or-no question, all participants gave open-responses about wanting to continue a longer version of the program and identified potential financial challenges to address to make participation possible.
Trying to understand or meet behavioral expectations	Expressions about efforts to learn others' expectations and meet those expectations in interactions with others.
Group-level theme names	Group-level theme definitions
Learning other's social interaction expectations:	All participants but one expressed narratives of wanting and trying to understand and meet expectations for social interactions (e.g., for phone calls; for interviews; for hangouts; for friendship; for when to leave others alone). The other participant prioritizes getting used to other people.
Living in residence with others:	All participants expressed narratives of efforts to learn to adapt to others' expectations for living in shared residence with roommates (e.g., sharing food or fridge space; cleaning and sharing common areas or equipment; self-regulation of emotions around others; friendship expectations).
Changes or stabilities in self-perception and attitudes toward oneself	A participant's views about and attitudes toward their identity or personhood and who they want to be.
Group-level theme names	Group-level theme definitions
I can make efforts toward my independent goals and be part of a community, with supports:	Rather than view themselves as pursing personal interests in home-bound isolation from a broader community, all participants expressed narratives of desiring, being, and planning to be a member of some kind of community where they can make efforts toward their own wellness goals with supports for making meaningful changes to their quality of life.

Narrative configuration and wellness journeys

Narrative configuration of wellness journey case studies can report rich description of a participant's QoL learning evidenced from all data analyzed (Tables 2 and 4, and Supplementary Table S1). Due to space constraints, we report excerpts from two participants' (Harold and Suzanne) wellness journeys, highlighting overall program engagement and QoL learning in one wellness goal. The narratives reflect extreme increases (Harold) and decreases (Suzanne) in most self-ratings while being open to themes about primary outcomes.

Participant 1: Harold

Harold entered the program having lived with his parents except for a very brief attempt at living at college, and attending weekly myLIFE Social Engagement Group meetings was one of his only community activities outside home life. He initially expressed interest to be more independent citing examples such as maintaining a clean room, getting out of the house more, and securing a job and personal transportation to be more independent. He reported a history of dissatisfaction with his life choices and a diagnosis of depression as factors limiting pursuing adult living skills. He noted that he viewed his 21st birthday during the program as a milestone for celebrating himself. Thematic analysis shows that by the end of the program, he showed the most change in developing more positive self-attributions and confidence in his abilities. These changes are compatible with his increases in all four ASIS constructs where he showed increases in positivity about autism, even if he deems his strengths unrelated to autism. He also self-appraised increases in many daily living skills in self-direction and health and safety categories, with increases in both ABAS-3 aggregate scores. Harold expressed interest in a longer wellness-oriented program, but worried about costs, and a tension of both not wanting to be at home and not feeling a sense of belonging on a university campus where he is not an enrolled student.

For Harold, spiritual wellness was ranked 4 out of his top 4 goals (Table 2). This included both plans for personal religious connections (e.g., reading more) and social connections involving praying for others, helping others, spreading happiness, being kind, and having more active relationships. These social parts of his spiritual goals intersected with his social wellness goals: Throughout the program, he wanted to practice being a friend, making friends happy, and meeting others' expectations in friendships. To develop social awareness of others' expectations, he planned to practice social interactions with family and take initiative in meeting new people. This reflects a theme of increased recognition of steps need to become more socially engaged, and a break from his preprogram inclination to talk only online to friends or to want only a few friends. Harold self-appraised spending time with others in the program, being a friend to them, and experiencing feelings of social connection that helped him to feel less depressed and better about himself. Harold self-rated (Table 4) no change in confidence in ability to learn more about his spiritual goals, and a decrease in confidence about ability to achieve his spiritual goals. Given that parts of his spiritual wellness goals were social in nature, it is worth noting Harold's self-rated increases in his interpersonal relationships closed-response data, and the decrease in saying or doing the right things in interpersonal relationships. Harold's themes compatibly indicate that while he thinks he helped others be happier, he does not know what to say or how to confirm happiness or meeting of expectations. He identified real-life challenges in balancing introversion with social and community participation, nervousness, lack of know-how about initiating talk or friendship with strangers, understanding others' expectations in friendships and hangouts, and lack of know-how about measuring how others are happier. This is compatible with his increase in confidence in learning more about his social goals and decrease in ability to achieve social goals. All these indicate that while he self-determined growth in relationships with others, he also learned to identify some challenges and ask for related supports. At the final program session, Harold noted that he finally “felt I had a reason to leave my room at home.”

Participant 2: Suzanne

At the start of the program, Suzanne reported living at home with her parents. She expressed that she enjoys learning more when based on her own interests. Suzanne self-rated emotional wellness as a top goal (Table 2). She participated in independent activities based on personal interests (e.g., baking), which she self-appraised as “went well.” All these indicate that Suzanne viewed her interests-based leisure and learning as central to her vision of meaningful independent living. This was also indicated in the postprogram wellness interview when she expressed interest in participating in a longer wellness-oriented program, but with more independent free time.

Suzanne rated her emotional wellness goals as top priority as she was concerned how to identify her own emotions, identify when she is emotionally overwhelmed, and how to recognize others' emotions through verbal or nonverbal social cues. She entered the program viewing her health conditions (hearing difficulties and spina bifida) as real-life challenges. During the program, she viewed them as restricting her active participation, leading her to feel physically and emotionally drained at times. Thematic analysis identified examples of her identifying and self-report her own emotions to program staff and supported her narrative that program staff helped through reminders and supports for emotional wellness. She negotiated learning about her need to take breaks after reaching exhaustion and being encouraged to take a break. Comparison of Suzanne's self-ratings (Table 4) of confidence in her ability to achieve and to learn more about her emotional wellness goals decreased, indicating a more negative self-appraisal in her ability to identify and navigate emotions. While her confidence ratings decreased, this may be due to increased awareness of the need to request help, as she did increase her requests for supports and for breaks indicating that she was actively engaged in learning how to identify and navigate emotions. Accordingly, item-level analysis showed an increase in self-rating of competency in taking care of emotional problems that arise. All these indicate that for Suzanne, independent living involves identifying and adapting to emotions, and while a more active lifestyle can lead to real-life challenges of identifying emotional needs, she showed active engagement and interest in working through these challenges to better adapt her activities for her needs once she has identified her emotions. These patterns appear to reflect possible increases in personal insight and evaluation of her skills in reference to the settings in which she was operating. In other words, she appears to have less confidence and positive attribution of her own characteristics and abilities to learn; however, she noted positive gains in actual skills, particularly related to daily living and community participation. Suzanne may have gained more insight into her own challenges while forming a more realistic appraisal of her strengths and challenges.

Discussion

This pilot shows one way of moving beyond a deficit-based skill-building approach toward a measurement-informed life arrangement approach to supporting and measuring autistic adults' QoL learning in pursuit of self-set wellness goals. The Program actively engaged autistic young adults in a university-based residential program using multiple tiers of behavioral support, including global environmental arrangement (e.g., arranging an inclusive, engaging, age-appropriate environment) and contingency management strategies (e.g., reactive and proactive positive behavioral support strategies), to focus on skills relevant to pursuit of self-set personal wellness goals. The Program measured QoL learning as active engagement, expressed interest, and changes in self-appraisal of competence, confidence, and identity. Thematic analysis showed themes about positive impact on each participant's QoL learning, and narrative configurations of themes with changes in closed-response items provide richer descriptions of their QoL learning processes. These show how the Program was successful in actively engaging participants and including their interest in defining and working toward personal wellness goals with embedded supports.

The description of the process of defining and evaluating the myLIFE on Campus Program offers a way of framing some critical issues that have long plagued autism research and strives to empower self-directed QoL in adulthood. The evaluation process applied here prioritized measurement of wellness goals to inform life arrangement to support QoL learning through pursing personal wellness goals, as well as preordinate mixed measurement of outcomes through a wellness interview and selected self-report instruments. This pilot also showed that such a mixed-methods approach is not only methodologically feasible but can also report participant engagements and meanings within community-based interventions without treating evaluation as manipulating and measuring isolated variables in highly controlled settings. Adult support programs can and should focus on measuring support needs as strengths and address struggles contextualized to personal meanings about real-life situations.

In future scale-up implementation of similar programs, studies might replicate this kind of evaluation process with new measurement strategies to capture the naturalistic and spontaneous nature of real-world activities, as well as the self-determination aspects of adult development, to achieve what is considered generalizability and functionality. Such future explorations might go beyond only preordinate measurements of participant meanings to also include responsive evaluation capabilities for ongoing sensitivities to program participants' input and their developmental contexts, focused on their values in defining the criteria of a positive successful life with participants and their support community.⁵⁴ Responsive evaluation is consistent with calls for more participatory and inclusive research^11,15 and helps move autism research toward incorporating the voice and engaged participation of participants in clinical intervention.

Other challenges to be addressed include the use of evaluation methods that are practically feasible and parsimonious to program resources, while retaining personal meaningfulness to autistic participants. The significance of qualitative data to capture meaning-making processes and provide direct feedback for goal formation, meaningful supports, and program adaptivity cannot be overstated.¹¹ The comparison of pre- and post-ratings showed trends in self-appraisal changes in specific skill areas that call for exploring the underlying meaning-making processes or mechanisms of self-appraisal changes. While the participants rated their priorities, competence, and confidence in their wellness goals, pre- and post-comparison did not adequately capture the meaning-making processes and changes in insight, despite staff observing increases in the actual skills and behaviors associated with the goals. For example, Suzanne's self-ratings of confidence and competence in learning and achieving wellness goals decreased; however, her ratings of her actual skills increased, indicating more complex learning processes than could be captured by quantitative data alone.⁶⁶

Future program adaptations need to systematically use both qualitative and quantitative tools to capture and evaluate participant insight and growth. Qualitative interviews about specific self-report data, or changes thereof, can give participant voice to why they self-rated their independent living skills this way, informing deeper understanding of support needs and efforts for the future. Quantitative measurements also have a role in evaluating intervention effects on specific measurable targets. For example, concrete measurement can complement qualitative report of their identified goals in each wellness domain (e.g., change in minutes of physical activity for a physical goal; skill competency assessment beyond self-appraisal). In addition, group data that can capture changes while retaining nuanced understanding of personal outcomes need to be explored.⁶⁹ The resulting skills or goal areas identified will still be context-specific, while the aggregate data across participants can provide a parsimonious proxy for program-wide effectiveness.

While this pilot has many strengths, there are limitations. Notable is the small sample size, limiting detection of group effects using statistical analysis. Also, only verbally able participants who expressed interest in program participation were included, and applicability to individuals with higher support needs is questionable. Also, the resource and facilitation skill needed from the program personnel to engage participants in meaningful ways, limits the numbers of individuals who can participate. However, the program offers a process that can be built into a replicable guide for other universities, and its wellness goal measurement process can inspire development of person-centered qualitative assessments of meaningful outcomes for adult interventions aimed at impacting QoL through QoL learning. While the 3-week pilot was successful, much more time is needed to truly impact long-term QoL. Despite these challenges, the openness of the University community to include nonstudent adults on the spectrum offers an opportunity to develop and evaluate programs to collaboratively facilitate real changes in the life trajectories of autistic adults. Future programs should also consider evaluating program effects at the levels of family, peer, and community to further explore approaches to achieve inclusion at a broader scope and directly include autistic adults in participatory research as co-researchers.⁷⁰

Authorship Confirmation Statement

All authors were involved with initial conceptualization, continued development, and implementation and supervision of program components, including program activities, and data collection. J.B.B., M.R., and C.E.R. completed the qualitative data analyses and summaries. J.B.B., G.Y.H.L., T.T., and C.E.R. were involved in drafting and editing this article. This article is only submitted to this journal and is not published anywhere else.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

Funding supporting this program was from donations from the Autism Foundation of Georgia and Angels for Autism, as well as from a grant for myLIFE manual development from NEXT for Autism and service contracts with the Georgia Vocational Rehabilitation Agency.

Supplementary Material

Supplementary Table S1