Families of adults with ASD (n=49) were recruited from two midwestern states through local autism groups, clinics, and university research registries. Adults with ASD were assessed using the Childhood Autism Rating Scale, Second Edition (CARS-2; Schopler, Van Bourgondien, Wellman, & Love, 2010) to characterize current autism symptoms, the Wechsler Abbreviated Scale of Intelligence (WASI-II; Wechsler, 2011) to describe their intellectual abilities, and the Waisman Activities of Daily Living (Maenner et al., 2013) to characterize daily living skills. Inclusion criteria for the present study were: (1) the adult with ASD was 18 to 30 years of age; (2) the adult had an intelligence quotient equal to or greater than 70; (3) confirmation of the adult’s independent medical diagnosis or educational label of autism spectrum disorder using the Social Communication Questionnaire (SCQ; Rutter, Bailey & Lord, 2003); (4) adult co-resided with parent(s) and (5) adult spent less than 10 hours per week in employment/educational activities. As shown in Figure 1, following baseline data collection (Time 1), families were randomly assigned to the intervention condition (n=23) or waitlist control condition (n=26). For our first and primary research question, we included only individuals with complete data across the first three waves of data collection (Times 1, 2, and 3), resulting in an analytic sample of 40 families (20 intervention, 20 control).
Many families involved more than one parent or parent figure in the study. In these cases, based on family preference, one parent/parent figure was designated as the primary respondent for research purposes. Of the primary respondents in our analytic sample, 87% were female; the majority (92%) were non-Hispanic White and 65% had completed a bachelor’s degree. The families’ household incomes ranged from under $20,000 to over $160,000 dollars per year (pre-tax income in 2016), with a median of $80,000. The adults in our analytic sample ranged in age from 18 to 30 years (M=21.77; SD=2.94); 65% were male and almost 90% were White.
As presented in Table 1, there were no statically significant differences between the intervention and control groups at baseline in terms of parental sex, educational attainment, or family income. Also, there were no statistically significant differences between the two groups in the adult with ASD’s variables of sex, age, race/ethnicity, receiving Medicaid, autism symptoms (as measured by the CARS-2), daily living skills (as measured by the Waisman Activities of Daily Living) or intelligence (as measured by the WASI-II). There also were no differences at baseline in number of types of behavior problems (as measured by the Scales of Independent Behaviors-Revised; Bruininks et al., 1996), which was an outcome variable of interest.
The study was approved by the University [removed for blind review] Institutional Review Board and all participants provided written informed consent before beginning the study. Data were collected from parents and adults at five time points separated by approximately three months: baseline, 3, 6, 9, and 12 months (Times 1-5, respectively). For all waves of data collection, parents participated in a standardized interview and completed self-administered questionnaires regarding the behaviors and activities of their son or daughter; we have successfully employed these instruments and process in our prior work with families of adolescents and adults with ASD (e.g., DaWalt et al., 2018; Woodman et al., 2016; Woodman et al., 2015). Adults also participated in a separate structured interview at each time point to answer questions related to well-being and daily activities. The interviews and questionnaires were identical at each wave of data collection with three notable exceptions: (1) the baseline parent questionnaire included demographic questions, (2) the baseline adult assessment included cognitive and autism symptom testing, and (3) data collection following completion of the intervention included questions related to satisfaction with the intervention.
Following the completion of the baseline data collection (Time 1), families in the intervention condition participated in the Working Together intervention program (described below); families in the waitlist control condition participated in the intervention following the Time 3 data collection.
The Working Together program was developed through an iterative process that involved integrating existing research with stakeholder input. Specifically, we created a detailed curriculum based on our longitudinal research and past intervention work, conducted a series of focus groups with key stakeholders (e.g., individuals with ASD, family members, service providers), and implemented a feasibility pilot in order to gain families’ perspectives on the content and process of the intervention. Throughout the development of the intervention, we partnered with an advisory board (comprised of adults with autism, family members, and service providers) to ensure that the intervention would be community-informed. The resulting Working Together intervention involved 2 individual family joining sessions, 8 weekly parent and adult group sessions, 3 monthly booster sessions, and ongoing resources and referrals. Joining sessions lasted approximately one hour; the purpose of the joining sessions was to build rapport and partnership and to clarify unique family goals for the program through the use of activities such as a family timeline and ecomap. Each family was allowed to include family members of their choosing to attend the joining sessions (e.g., some families invited a sibling or grandparent to attend), although most joining sessions were comprised of participating parents and adults with ASD. After families completed joining sessions, the weekly group sessions were held at the same time and place for both parents and adults, but in separate rooms. Group sessions lasted approximately 1.5 hours and were comprised of 4-7 families per group. Intervention group sessions for adults and their parents involved education on a variety of topics relevant to ASD as well as guided practice in problem-solving (session topics and goals are presented in Table 2). Following completion of the 8 weekly group sessions, a series of 3 monthly group boosters (1.5 hrs. each) were conducted for adults with ASD and parents (again meeting separately in the same building). Sessions provided an opportunity for group members to connect and to provide updates on progress with individual goals. For both adults and parents, boosters began with a period of “check ins” for updates on the adult’s and family’s functioning, followed by group problem-solving around emergent concerns. For both parents and adults, positivity and problem-solving were explicitly modeled and emphasized across all sessions.
We note that several steps were taken to ensure treatment fidelity. All intervention staff participated in training to learn about study goals and procedures, review curriculum components (which were manualized and included fidelity checklists), and role-play conducting joining sessions and multi-family group sessions. Parent groups were facilitated by one PhD-level psychologist and one graduate student; the adult groups were facilitated by a Masters-level psychologist or social worker and one or more postdoctoral fellow and/or graduate students. At the conclusion of each intervention session, the supervising psychologist led the other intervention staff in a short debriefing meeting so that staff could express reactions, ask questions, and problem-solve any issues that may have arisen during either the parent group or the young adult group. Group facilitators also had supervision meetings twice a month to discuss field notes, troubleshoot problems, review resources and referrals for families, and receive constructive feedback. This type of continuous staff training and supervision has been supported as an important mechanism for treatment fidelity (Borkowski et al., 2006).
Engagement in Work
At each time point, parents reported whether or not their son or daughter had worked for pay in the past week. Responses of 0 reflected “no work for pay” and 1 reflected “any work for pay.”
Engagement in Positive Activities
Adults with ASD reported on their engagement in positive activities at each wave of data collection using the following item measured on a 5-point Likert scale, “how often do you do things that make you happy or proud?”, with response options ranging from 0 = never to 4 = all of the time. Examples of positive activities reported by the adults with ASD included having an art piece in a gallery, completing a distance race, doing chores and taking care of their cat, and finishing a woodworking project.
Behavior problems were measured at each time point using an adapted version of the Problem Behavior subscale of the Scales of Independent Behavior-Revised (SIB-R; Bruininks et al. 1996). Parents indicated the presence of behavior problems across three domains: internalized (hurtful to self, unusual or repetitive habits, withdrawn or inattentive behavior), externalized (hurtful to others, destructive to property, disruptive behavior) and asocial (socially offensive and uncooperative behavior). Each type of behavior problem was coded as manifested (1) or not manifested (0) during the past month. The total number of types of behavior problems (0-8) was calculated by summing across all eight categories of behavior problems. Next, parents who indicated that their son or daughter displayed a given category of behavior problem during the past month then rated the frequency of the behavior, from 1 = less than once a month to 5 = one or more times/hour, and the severity of the behavior, from 1 = not serious to 5 = extremely serious. Standardized algorithms (Bruininks et al. 1996) were used to translate the frequency and severity ratings into the following subscales: internalizing problems, externalizing problems, and asocial problems. Reliability and validity have been established by Bruininks et al. (1996). Higher values indicate higher levels of behavior problems and scores of 110 or higher reflect a clinically-significant level of behavior problems.
For all analyses, dependent variables included engagement in work, engagement in positive activities that made the adult feel happy and proud, number of types of behavior problems, internalizing behaviors, externalizing behaviors, and asocial behaviors. For our first research question, we conducted a series of three (time) by two (group) repeated measures ANOVAs to test for differences in change in the above outcomes of interest from pre-intervention to post-intervention (Time 1, Time 2, and Time 3, respectively) between the intervention group and the control group. For our second question related to maintenance of treatment effects, we conducted a series of repeated measures ANOVAs to test for the within-group change in the outcome variables in the intervention group during the 6 months following the completion of the intervention (Time 3, Time 4, and Time 5 waves of data collection). To answer our third research question related to replication of the treatment effect in the control group, we conducted a series of repeated measures ANOVAs to test for change in the outcome variables of interest in the control group during the period when they were receiving the intervention (Time 3, Time 4, and Time 5 waves of data collection). To answer our fourth research question, data were restructured in order to combine samples such that for each case the waves of data in the analysis reflected the time immediately before (i.e., Time 1 for the intervention group and Time 3 for the control group), during (i.e., Time 2 for the intervention group and Time 4 for the control group), and immediately after receiving the intervention (i.e., Time 3 for the intervention group and Time 5 for the control group). We then conducted a series of repeated measures ANOVAs to test for change during the period where all cases were receiving the intervention. Thus, for the intervention group, data were from the Time 1, Time 2, and Time 3 data collections and for the control group data were from the Time 3, Time 4, and Time 5 data collections.