Impact of Working Together for Adults with Autism Spectrum Disorder: A Multifamily Group Intervention

doi:10.21203/rs.3.rs-134792/v1

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Impact of Working Together for Adults with Autism Spectrum Disorder: A Multifamily Group Intervention

https://doi.org/10.21203/rs.3.rs-134792/v1

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Background. Adults with autism spectrum disorder (ASD) have lower participation in post-secondary education, higher rates of unemployment/underemployment, and continued difficulties with challenging behavior and mental health problems compared to their peers. Multi-family psychoeducation emphasizes education and problem-solving with the goal of improving outcomes for the individual with the disability.

Methods. Using a randomized waitlist control design, the present study evaluated a multi-family group psychoeducation intervention, Working Together, for adults on the autism spectrum without intellectual disability (n=40). Five waves of data were collected at three-month intervals. In this design, families in the intervention condition participated in intervention during the 6 months between baseline and Time 3 data collection; the waitlist control condition received the intervention immediately after the Time 3 data collection. We compared these two conditions, intervention group vs waitlist control group, on key outcomes for the adults with ASD: engagement in work, engagement in positive activities, and behavior problems.

Results. Results indicated that the Working Together intervention was associated with increases in engagement as well as decreases in behavior problems, particularly internalizing problems. We also found maintenance of the treatment effect through 6 months post-treatment for the intervention group and replication of the treatment effect within the control group after they received the intervention.

Conclusion. Working Together is a promising multi-family group psychoeducation intervention designed to improve functioning during adulthood. These findings highlight the need for more intervention services research during adulthood and specifically the need for family-centered supports.

Developmental Neuroscience

Pediatrics

autism spectrum disorder

adulthood

multi-family group psychoeducation

behavior problems

Adults with autism spectrum disorder (ASD), including those without co-occurring intellectual disability (ID), have strikingly poor adult outcomes compared to their peers including lower participation in post-secondary education, high rates of unemployment/underemployment, and continued difficulties with challenging behavior and mental health problems (Henninger & Taylor, 2013; Howlin & Moss, 2012; Lord et al., 2020; McCauley et al., 2020; Clark et al., 2020; Shattuck et al., 2012; Roux et al., 2013; Esbensen, Seltzer, Lam, & Bodfish, 2008; Seltzer et al., 2004; Shattuck et al., 2007; Woodman et al., 2015). Entitlement to many formal services ends for these individuals at their entry into adulthood, resulting in long-term reductions in needed supports (Laxman et al., 2019). Of particular concern, there is evidence that the gains made in behavioral functioning during adolescence may plateau or even decline after these individuals exit high school (Smith et al., 2012; Taylor & Seltzer, 2010), suggesting adulthood as a period of heightened risk. Given the rapid increase of autism diagnoses since the 1990s (Gurney et al., 2003; Maenner, Shaw, & Baio, 2020), more adults than ever before have an ASD diagnosis, creating a pressing need for interventions that promote positive outcomes during this life stage. The present study focused on evaluating a new multi-family group psychoeducation intervention, Working Together, designed for disengaged adults with ASD without co-occurring ID (defined here as those who have less than 10 hours/week of paid employment/educational programming) and their families, with the goal of increasing engagement in meaningful activities and improving behavioral functioning (i.e., reducing behavior problems).

Engagement in Meaningful Activity and Behavioral Functioning

National survey data reveal that 42% of adults with ASD are never employed at any point during their 20s (Roux et al., 2015). Similarly, in a community-based sample of adults with ASD, Taylor and Seltzer (2010) found that only 18% of the sample had competitive or supported employment. Further, over 25% of the adults in the sample without ID had no daytime activities of any kind compared to only 8% of young adults with ID, suggesting a disparity between those with and without ID in the availability and/or appropriateness of adult services (Taylor & Seltzer, 2010). A follow-up study found that even when individuals had employment at one time point, vocational independence declined over time, particularly for women (Taylor et al., 2015).

Adults with ASD also are at-risk for challenges with behavioral functioning, particularly in the area of internalizing problems. For example, lifetime estimates for individuals with ASD range as high as 23-37% for depression and 27-52% for anxiety disorders (Croen et al., 2015; Hollocks, Lerh, Magiati, Meiser-Stedman, & Brugha, 2019; Spain et al., 2016), compared to rates of 10% and 9% in the general population (Croen et al., 2015). There is also evidence to suggest that engagement in meaningful daytime activities may be linked with behavioral functioning. For example, using two time points of data separated by 5.5 years, Taylor and colleagues (2014) examined the directionality of associations between vocational independence and behavioral development for 153 adults with ASD and found that adults who initially had more vocational independence had greater subsequent improvement in autism symptoms, maladaptive behaviors, and daily living skills. The opposite direction of effects (earlier behavioral measures to subsequent vocational independence) was not statistically significant. Thus, behavioral difficulties might be alleviated to some extent through vocational engagement. Taken together, these studies point to a pressing need for interventions to support both the engagement of adults with ASD in meaningful activities and their behavioral health.

Role of the Family

Parents of individuals on the autism spectrum are significant sources of support across adult life and bidirectional influences between adults with ASD and their family members are well-documented (Barker et al., 2011; Chamak & Bonniau, 2016; Greenberg, Seltzer, Hong, & Orsmond, 2006). Our longitudinal work among families of adolescents and adults with ASD has demonstrated that high levels of emotional intensity in the home can lead to increases in behavior problems and autism symptoms over time (Baker et al., 2011; Greenberg et al., 2006). In contrast, when parents of youth and adults with ASD are warm and positive toward their children, the behaviors and autism symptoms of their children abate (Smith et al., 2008a; Woodman et al., 2015; 2016). Given the centrality of the family in the lives of adults with ASD, it is strategically advantageous to involve the family in change processes. However, most services available for individuals with ASD during adulthood do not involve family members as partners and there are no empirically-based interventions designed for families during their son or daughter’s adulthood (Nicholas et al., 2016; Schultz et al., 2011; Taylor, Dove, et al., 2012).

Multi-family group psychoeducation is a well-developed intervention approach with proven efficacy among families of individuals with psychiatric conditions such as schizophrenia (Dixon et al., 2000; McFarlane et al., 2003) and mood disorders (Colom et al., 2009; Milklowitz et al., 2003). Although the content and components of psychoeducation interventions vary by study and type of condition or disability, they have key elements in common: The intervention involves weekly group sessions wherein multiple families are provided with relevant education and resources related to the disability or mental health condition as well as training in, and activities for, practicing problem-solving. Multi-family psychoeducation emphasizes education and problem-solving with the goal of improving outcomes for the individual with the disability. In our prior intervention work with adolescents with ASD, participation in multi-family group psychoeducation was associated with significant increases in social engagement (e.g., hanging out with friends, calling/texting) for the adolescents with ASD (DaWalt et al., 2018) as well as improvements in the parent-child relationship (Smith et al., 2012). The present study examined how multi-family group psychoeducation may improve engagement in meaningful activity and reduce behavioral challenges for adults with ASD who are disengaged from meaningful adult roles, such as pursuing post-secondary education or working.

Present Study

The present study examined the effects of Working Together (WT), a multi-family group psychoeducation intervention for adults with ASD without ID, using a randomized waitlist control design. Five waves of data were collected at three-month intervals (Time 1 = baseline, Time 2 = 3-month follow-up, Time 3= 6-month follow-up, Time 4 = 9-month follow-up, and Time 5 = 12-month follow-up). In this design, families in the intervention condition participated in WT during the 6 months between baseline and Time 3 data collection; the waitlist control condition received the intervention immediately after the Time 3 data collection. We compared two conditions, intervention group vs waitlist control group, on key outcomes for the adults with ASD: engagement in work, engagement in positive activities, and behavior problems.

Our first and primary research question was: is there a difference in change from baseline to post intervention (measured at the Time 1, Time 2, and Time 3 points of data collection) for adults in the intervention compared to adults in the waitlist control condition on key outcome measures? We hypothesized that individuals who received the intervention would have greater improvements in outcomes than individuals in the waitlist control condition. We also asked explored maintenance and replication of the treatment effects. Specifically, for our second question, we asked if there was maintenance of the intervention effect for the intervention group during the 6-month period when they were no longer receiving any intervention (Time 3, Time 4, and Time 5 points of data collection). We hypothesized that there would be maintenance of intervention effects as evidenced by lack of decline. Next, for our third question, we asked if there was significant change in adult outcomes for the waitlist control group after receiving the intervention (Time 3, Time 4, and Time 5 waves of data collection); significant improvements in the waitlist control group would reflect a replication of the treatment effect in a separate cohort. We hypothesized that the waitlist control group, when given the intervention, would show similar patterns of change as the intervention group. Finally, for our fourth question, we asked if there was significant change over time on key outcomes when combining intervention and control groups. With the enhanced statistical power from combining groups, we anticipated that there would be significant improvement in outcomes over the time when participants received the intervention (i.e., Time 1, Time 2, and Time 3 of data collection for the intervention group, and Time 3, Time 4, and Time 5 of data collection for the control group).

Participants

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.

Procedures

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).

Measures

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

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.

Data Analysis

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.

Research Question 1: Primary Test of Treatment Effect

To answer our first research question, we examined differences in change between the two groups from pre-intervention to post-intervention (Times 1, 2, and 3) on engagement in work, engagement in positive activities, and behavior problems. Results for the interaction of group by time for engagement are shown in Table 3. Although not statistically significant at the p<.05 level, there was a strong trend of increase in working for pay for the intervention group over the 6-month intervention period, compared to a decline in work in the control group, F=3.74, p=.06, reflecting a medium to large effect (partial ⴄ² =.09). Also shown in Table 3, there was a significant group by time interaction for engagement in positive activities, F=7.29, p=.01, reflecting a large effect (partial ⴄ² =.17). Adults in the intervention group reported a higher frequency of doing things that made them feel happy/proud at post-intervention than at pre-intervention; a significant change was not observed in the control group.

As shown in Table 3, there was also a significant group by time interaction for total number of types of behavior problems, F=5.33, p<.05, such that adults in the intervention group had a decreased number of behavior problems over time, whereas there were no differences over time for the control group. Notably, for adults in the intervention group, there was an average reduction of one type of behavior problem over the 6-month period from before to after the intervention. When examining the subscale scores for specific behavioral domains, there was a significant group by time interaction for internalizing problems, such that adults in the intervention group had a decreased level of internalizing behaviors from pre- to post-intervention, whereas there was no change for the control group (see Figure 2, noting Times 1-3 for both groups). We note that the clinical cut point for problem behavior on the SIB-R is 110; the mean score for the intervention group at baseline (M=117.00) was well above that cut point. However, the mean for the intervention group at post-intervention (M=109.60) had dropped below the clinical cut-off, reflecting clinical as well as statistical significance and a large effect size (partial ⴄ² =.17). For externalizing problems, mean scores at baseline were not clinically elevated for either group, and for asocial problems, mean scores at baseline were just at clinical cut offs for both intervention and control groups. The interaction terms for externalizing problems and asocial problems were not statistically significant, suggesting no statistically significant differences between the groups in change from pre- to post-intervention.

Research Question 2: Maintenance of Treatment Effect in Intervention Group

To answer our second research question, we tested for maintenance of treatment effects by examining engagement in work, engagement in positive activities, and behavior problems during the 6-month period following completion of the intervention (Time 3, Time 4, and Time 5 data collections). This analysis was restricted to intervention group cases with complete data at these waves of data collection (n=16 out of 20 families). As shown in Table 4, consistent with our hypothesis, we found maintenance of treatment effects in the 6 months after the end of the intervention, as evidenced by no statistically significant effects of time for any of the outcome measures.

Research Question 3: Replication of Treatment Effect in Control Group

To answer our third research question regarding replication of the treatment effect in the control group, we tested for change in engagement in work, engagement in positive activities, and behavior problems from pre-intervention, mid-point, and post-intervention (Time 3, Time 4, and Time 5 data collections). Individuals who were initially assigned to the control group received the intervention immediately after Time 3; analysis was restricted to those cases with complete data at Times 3, 4, and 5 (n=17 out of 20 families). As shown in Table 5, there was a pattern of increase in engagement in work with a small effect (partial ⴄ² =.02); however, the effect of time was not statistically significant. Next, there was a significant increase in engagement in positive activities, F=4.38, p=.055, with a large effect size (partial ⴄ² =.24). Regarding behavior problems, we observed a reduction in the number of type of behavior problems with a large effect size (partial ⴄ² =.18), although this was not significant at the p<.05 level (F=3.43, p<.10). There also was a statistically significant decrease in the level of internalizing problems (F=6.53, p<.05) over time, with a large effect size (partial ⴄ² =.29). Importantly, the internalizing mean score immediately before receiving the intervention was above the clinical cut point (M=111.88) the mean was below the clinical cut point after the intervention (M=107.76). There were no statistically significant effects of time for externalizing behavior problems, which were below the clinical cut point before and after the intervention, or for asocial behavior problems which were at or just below the clinical cutoff before and after the intervention. Consistent with our hypothesis, these intervention findings with the waitlist control group cases mirror the effect found for the intervention group when they received the intervention, reflecting replication of the treatment effect in a second cohort.

Research Question 4: Treatment Effect for Combined Sample of Intervention and Control Group

Finally, to answer our fourth question, we tested for change in engagement in work, engagement in positive activities, and behavior problems from pre-intervention to post-intervention in a restructured, combined sample. For intervention cases, data were drawn from Times 1, 2, and 3 whereas for control cases, data were drawn from Times 3, 4, and 5. This analysis was restricted to the 37 of the original 40 cases with complete data at these waves of data collection (20 intervention, 17 control). As shown in Table 6, there was a trend for increases in engagement in work over time, F=2.80, p=.10, with a medium effect size (partial ⴄ² =.07) and a statistically-significant increase in engagement in positive activities, F=14.98, p<.001, with a large effect size (partial ⴄ² =.26). There also was statistically significant change for all behavioral measures – internalizing, externalizing, and asocial behavior problems. Of particular note, for internalizing and asocial subscales subscales, the mean level of behavior problems was in the clinical range prior to the intervention but below the clinical cut point following completion of the intervention. Effects sizes ranged from medium to large (partial ⴄ² from .13 to .38).

Using a randomized waitlist control design, the present study evaluated a multi-family group psychoeducation intervention, Working Together, for adults on the autism spectrum without ID. Consistent with results of multi-family group psychoeducation interventions for adolescents with ASD without ID (Smith et al., 2014; DaWalt et al., 2018) as well as for individuals with mental health conditions (e.g., mood disorders; Sanford et al., 2006), our findings point to significant benefits of this intervention approach for adults with ASD. Specifically, in the present study, the Working Together intervention was associated with increases in engagement in positive activities and working for pay, as well as decreases in behavior problems, particularly internalizing problems.

Lack of engagement in meaningful activities such as employment and post-secondary education are well-documented for adults with ASD (Henninger & Taylor, 2013; Howlin & Moss, 2012; Shattuck et al., 2012; Roux et al., 2013). Findings from the present study suggest that multi-family group psychoeducation may be one mechanism for increasing engagement, as we observed increases in self-reported positive activities and parent-reported working for pay. The loss of structure following high school exit has been posited as a risk for well-being for individuals with ASD (Taylor & Mailick, 2010). Conversely, higher levels of community-based vocational independence have been associated with improvements in behavioral functioning over time (Taylor et al., 2014). The WT intervention delivered research-based education on key topics relevant to adulthood (e.g., employment, planning for independence, coping, community and relationships; see Table 2) as well as training and practice in problem-solving around family-identified concerns to both adults with ASD and their parents. These intervention components enhanced specific skills, in combination with family support, for the adults to engage in consistent meaningful activities particularly in work and doing activities that brought personal happiness. Interestingly, at the 6-month follow-up, individuals in the intervention group reported engaging in positive activities “most of the time,” on average, suggesting that these benefits were sustained.

In addition to the observed benefits of increased engagement in work and positive activities, participating in the WT intervention was associated with clinically and statistically significant reductions in behavior problems. Notably, we found a large effect of the intervention for the internalizing problem subscale of the SIB-R which is a measure of withdrawn/inattentive behavior and unusual/repetitive habits. These findings were very robust, as the improvements in internalizing problems remained over the 6-month follow-up period. Further, decreases in internalizing problems was observed for individuals in the waitlist group upon receiving the intervention, thus replicating the findings. Taken together, findings suggest a shift for individuals over the course of the intervention away from clinically-significant internalizing behavior to more meaningful engagement in daily life.

It also is important to note that although there were improvements in engagement in work for individuals with ASD associated with the intervention, overall engagement in work was still relatively low (i.e., at 6-month follow-up, only 50% of adults in the initial intervention group had worked for pay in the past week), highlighting the need for ongoing services and supports for adults on the spectrum as well as additional policy work to increase diverse integrated employment opportunities. Adults on the spectrum may need additional curriculum components more specifically targeting employment skills, with longer duration and/or intensity of services, in order to achieve sustained competitive employment. It will be important for future research to answer questions regarding how to tailor dosage and timing of treatment to enhance intervention effects.

The present study was not without limitations. First, the sample size was small and adults in the study were primarily White. Parents also had relatively high levels of educational attainment, limiting the generalizability of the findings. Further, the intervention was focused on individuals with ASD who did not have ID and who at the time of enrollment were disengaged from vocational/educational activities (defined as less than 10 hours per week engaged in employment or educational activities). More research is needed to extend this work and evaluate the multi-family group psychoeducation approach with families from culturally and linguistically diverse backgrounds, for those with more significant support needs, and for those with higher initial levels of engagement. Although we assessed working for pay in the present study, we did not gather data on satisfaction with work or the fit of the work with the goals and interests of the adult on the spectrum. Similarly, our measure of engagement with positive activities was based on a single Likert-scale item; future work should examine additional meaningful activities. Finally, the present study only followed families in the intervention for 6 months after completion of the intervention. Future work should examine if effects of the intervention are sustained for a longer duration and what forms of supports may be needed to maintain gains over time.

Juxtaposed with these limitations are several strengths. The study included reports provided by both adults with ASD and their parents. Importantly, consistent with calls for a more holistic conceptualization of outcomes during adulthood (Taylor & Henning, 2013), adults with ASD reported on their own engagement in meaningful activity, highlighting the intervention’s positive effects on an outcome that mattered specifically to the person on the autism spectrum. Further, we employed an iterative process of intervention development, drawing from our longitudinal research findings and gathering input directly from adults on the spectrum through focus groups and our advisory board; this helped to ensure the relevance of the curriculum for the end users. Next, the study design allowed for testing of maintenance effects 6 months after the end of the intervention as well as replication of the treatment effects in a separate cohort (i.e., the waitlist control group). Taken together, these findings suggest medium to large effects of the intervention. Finally, women are often underrepresented in studies of adults with ASD and it is also notable that over a third of the individuals with ASD in the current study were female or nonbinary.

In conclusion, results from this randomized waitlist control trail highlight potential benefits of the Working Together program for improving engagement in meaningful activities such as working for pay and doing things that make one happy or proud, as well as reducing behavior problems, particularly internalizing problems, for adults with ASD. These findings are consistent with the gains demonstrated in studies of multi-family group psychoeducation interventions conducted with other populations (Dixon et al., 2000; McFarlane et al., 2003). Addressing calls for more intervention services research during adulthood (e.g., U.S. Department of Health and Human Services’ Interagency Autism Coordinating Committee strategic plan), and specifically the need for family-centered supports (Nicholas et al., 2016), Working Together is a promising multi-family group psychoeducation intervention designed to support adults on the autism spectrum and their families in order to improve functioning during adulthood.

Ethics approval and consent to participate

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional review board and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Consent for publication

Not applicable.

Availability of data and material

The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.

Competing interests

The authors declare that they have no competing interests.

Funding

This research was supported by a grant from the National Institute of Mental Health (R34 MH104308, L. DaWalt, PI) as well as from grants from Autism Speaks (7523, L. Smith, PI) and the National Institute on Aging (R01AG08768, M. Mailick, PI). We are also grateful for the support we received from the Waisman Center (U54 HD090256, Q. Chang, PI) and UW-Madison’s Clinical and Translational Science Award Program for community intervention research (supported in part by grant U21 RR025011).

Authors' contributions

LD, RH, AE, and MM conceptualized the study. LD and MM secured funding for the study. LD, RH, and AE provided oversight during data collection. LD analyzed and interpreted the participant data regarding the intervention effects. EH was a major contributor in the writing and preparation of the manuscript. All authors read and approved the final manuscript.

Acknowledgements

We are extremely grateful to the families who participated in this study; without their generous support and commitment, our research would not be possible.

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Table 1. Background Variables at Time 1 for Intervention (n=20) and Control (n=20) Groups

	Intervention	Control	F or Chi-Squared
Parent Variables
% Female	85%	95%	1.12
% College	55%	76%	1.86
Average family income	$75,000	$78,000	0.08
Adult Variables
% Male	65%	65%	0.42
Age	M=21.63 (SD=2.73)	M=21.94 (SD=3.26)	0.09
% Non-Hispanic White	79%	94%	0.20
% Receiving Medicaid	45%	40%	.10
Number of type of behavior problems	M=3.65 (SD=1.81)	M=3.55 (SD=1.73)	0.03
Autism Symptoms	30.05 (4.47)	29.26 (5.30)	.24
Daily Living Skills	M=25.47 (SD=4.85)	M=24.73 (SD=3.54)	0.30
IQ	M=104.6 (SD=15.92)	M=110.65 (SD=16.82)	1.37

Table 2. Overview of Session Topics and Goals

Session	Topic	Adult Group Goals	Parent Group Goals
Group Meeting 1	Introduction	Meet other adults on the spectrum *Find shared interests (Orsmond et al., 2004)	Meet other families *Learn about developmental course of ASD (Seltzer et al., 2003; Seltzer et al., 2004; Shattuck et al., 2007)
Group Meeting 2	Goal Setting and Problem Solving	Learn about goal setting Write personal goals that are realistic and measurable	*Learn about educational/training services and goal setting (Taylor & Seltzer, 2010) Learn and practice problem-solving method
Group Meeting 3	Coping Strategies and Problem Solving	*Discuss coping strategies (Essex et al., 1999; Smith et al., 2008b) Learn problem-solving method Problem-solve stress management	*Learn about supportive family climates and coping (Baker et al., 2011; Baker, Smith, et al., 2011; Smith et al., 2008b; Greenberg et al., 2006; Orsmond et al., 2006)
Group Meeting 4	Planning for Independence	Learn about the importance of planning out and practicing tasks that are important for independent living	Learn about challenges to independence and strategies for supporting independence
Group Meeting 5	Employment	*Learn about job behaviors (Taylor & Seltzer, 2012; Taylor et al., 2014; Taylor & Mailick, 2014) Problem-solve difficulties on the job	*Learn about employment services and supports (Taylor & Seltzer, 2012; Taylor et al., 2014; Taylor & Mailick, 2014) Discuss advocacy strategies
Group Meeting 6	Community and Relationships	Learn social planning and conversation strategies Problem-solve social difficulties	*Finding community activities and social opportunities (Esbensen et al., 2010; Orsmond et al., 2004; Taylor & Seltzer, 2010)
Group Meeting 7	Personal Safety	Discuss communication skills and areas of difficulty. Talk about communication and why it is important to safety Problem-solve safety concerns	*Receive information on long-term planning: powers of attorney, wills, trusts (Essex et al., 1997; Krauss et al., 2005) Discuss safety concerns for adults with ASD
Group Meeting 8	Health and Well Being	*Learn about health and well-being during adulthood (Esbensen et al., 2009; Kring et al., 2010; Lainhart & Folstein, 1994)	*Learn about risks to parental health and well-being (Abbeduto et al., 2004; Barker et al., 2010; Kring et al., 2008; Seltzer et al., 2010; Smith et al., 2012c)

Note: Sessions based on published findings of our research group are marked with an asterisk (*).

Table 3. Change from Baseline to 6 months for Intervention and Control

	Intervention n=20			Control n=20			Group by Time Linear F and partial ⴄ²
	Time 1	Time 2	Time 3	Time 1	Time 2	Time 3
Engagement in work	.30 (.47)	.45 (.51)	.45 (.51)	.40 (.50)	.35 (.49)	.30 (.47)	F=3.74, p=.061, eta=.090
Engagement in positive activities	2.40 (.19)	2.60 (.20)	3.0 (.20)	2.42 (.19)	2.42 (.21)	2.32 (.21)	F=7.29, p=.01, eta=.165
Number of Type of Behavior Problems	3.65 (1.81)	2.75 (1.77)	2.65 (1.79)	3.55 (1.73)	3.30 (1.95)	3.45 (1.79)	F=5.33, p=.027, eta=.123
Internalizing Problems	117.00 (9.95)	108.70 (8.04)	109.60 (8.39)	111.95 (7.72)	111.45 (10.41)	110.85 (7.52)	F=7.69, p=.009, eta=.168
Externalizing Problems	102.10 (6.41)	100.45 (5.90)	100.65 (5.94)	102.70 (7.64)	100.70 (5.03)	100.60 (6.26)	F=.134, p=.716, eta=.004
Asocial Problems	110.65 (11.05)	105.80 (10.53)	106.30 (11.84)	111.80 (11.45)	110.70 (10.14)	110.65 (9.14)	F=1.42, p=.241, eta=.036

Table 4. Intervention Cases from 6 to 12 months (N=16)

				ANOVA
	Time 3	Time 4	Time 5	F and partial ⴄ2
Engagement in work	.38 (.50)	.31 (.48)	.50 (.52)	F=2.14, p=.16, eta=.125
Engagement in positive activities	3.17 (1.03)	2.83 (1.19)	3.08 (.90)	F=0.13, p=.72, eta=.012
Number of Type of Behavior Problems	2.63 (1.89)	2.89 (1.78)	3.06 (1.57)	F=1.35, p=.263, eta=.083
Internalizing Problems	108.38 (8.30)	112.13 (8.84)	109.06 (7.68)	F=.156, p=.699, eta=.010
Externalizing Problems	101.19 (6.43)	100.69 (6.53)	100.94 (7.51)	F=.053, p=.821, eta=.004
Asocial Problems	105.81 (12.01)	105.13 (9.81)	106.25 (9.44)	F=.019, p=.891, eta=.001

Table 5. Control Cases from Time 3 to Time 5 (n=17)

				ANOVA
	Time 3	Time 4	Time 5
Engagement in work	.29 (.47)	.35 (.49)	.35 (.49)	F=.32, p=.58, eta=.02
Engagement in positive activities	2.27 (.96)	2.60 (.63)	2.60 (.83)	F=4.38, p=.055, eta=.238
Number of Type of Behavior Problems	3.65 (1.87)	3.41 (1.37)	2.94 (2.14)	F=3.43, p=.083, eta=.176
Internalizing Problems	111.88 (7.17)	111.53 (9.07)	107.76 (6.79)	F=6.53, p=.021, eta=.290
Externalizing Problems	100.88 (6.67)	101.47 (8.17)	100.12 (5.15)	F=.688, p=.417, eta=.041
Asocial Problems	110.53 (9.83)	109.42 (8.54)	108.94 (13.24)	F=.557, p=.466, eta=.033

Table 6. Both Groups While Receiving Intervention

	All Cases N=37			ANOVA
	Baseline	3 months	6 months
Engagement in work	111.03 (7.92)	108.22 (7.10)	107.73 (7.40)	F=12.82, p=.001, eta=.263
Engagement in positive activities	.30 (.46)	.41 (.50)	.41 (.50)	F=2.80, p=.103, eta=.072
Number of Type of Behavior Problems	3.65 (1.81)	3.05 (1.61)	2.78 (1.93)	F=15.02, p=.000, eta=.294
Internalizing Problems	111.03 (7.92)	108.22 (7.10)	107.73 (7.40)	F=12.82, p=.001, eta=.263
Externalizing Problems	110.59 (10.36)	107.46 (9.71)	107.51 (12.40)	F=5.56, p=.024, eta=.134
Asocial Problems	114.65 (9.04)	110.00 (8.53)	108.76 (7.65)	F=21.77, p=.000, eta=.377

Note: In the intervention group: Baseline = Time 1, 3 months = Time 2, and 6 months = Time 3. In the waitlist control group: Baseline = Time 3, 3 months = Time 4, and 6 months = Time 5.

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Review #2 received at journal
01 Feb, 2021
Editorial decision: Major revision
01 Feb, 2021
Review #1 received at journal
23 Jan, 2021
Review #3 received at journal
20 Jan, 2021
Reviewer #3 agreed at journal
06 Jan, 2021
Reviewer #2 agreed at journal
27 Dec, 2020
Reviewers invited by journal
22 Dec, 2020
Reviewer #1 agreed at journal
22 Dec, 2020
Editor assigned by journal
22 Dec, 2020
Submission checks completed at journal
22 Dec, 2020
Editor invited by journal
22 Dec, 2020
First submitted to journal
21 Dec, 2020

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Impact of Working Together for Adults with Autism Spectrum Disorder: A Multifamily Group Intervention

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