There was a high risk of bias in terms of the study design of the studies we included in our review (Higgins and Green, 2011; Reichow et al, 2018; Sterne et al, 2016). First, only a few of the studies were randomized controlled trials; this, by default, introduces selection bias to the sampling strategy. In most of the studies, the participants were selected based on the subjective judgment of the clinicians. It is important to note that it is extremely difficult to conduct randomized controlled trials on this population given that few institutions provide regular access to participants. Other ethical and logistical considerations associated with this population—including, but not limited to, obtaining consent for participation, transportation to and from sessions, and compensation for participation—make this population relatively challenging to recruit. Nevertheless, we did identify four randomized controlled trials containing both a treatment group and a control group (Elliott et al, 1994; García-Villamisar and Dattilo, 2010; Lundqvist et al, 2009; Van Bourgondien et al, 2003). However, the process of randomization was clearly described in only three of these (Elliott et al, 1994; Lundqvist et al, 2009; Van Bourgondien et al, 2003), and all four studies provided inadequate descriptions of the inclusion and exclusion criteria as well as limited information on other potential neurodevelopmental factors that may have influenced participant performance. Thus, it is difficult to tell how representative the participants in the four studies were of the population as a whole (which, as mentioned, is heterogeneous in itself). Moreover, it was impossible to determine the presence of any confounding factors relevant to the outcomes tested. Only three of the 56 studies (Carminati et al, 2007; Fava and Strauss, 2010; Gerber et al, 2011) blinded the participants, investigators, and outcome assessments; the remainder of the included studies did not consider the impact of performance and detection bias in their designs.
We also found that the assessment of interrater reliability was often insufficient, which is of particular concern for studies of psychosocial and behavioral functioning, in which assessment of the outcome is subjective. Missing data were also encountered in many of the studies in our review; however, few of the studies discussed this issue, and there are no available published analyses of the possible patterns of missing data that may have confounded the reported findings and their interpretation.
To assess whether the methodological quality of the studies improved over time, we correlated the number of methodological issues identified with the publication date of each study. The quality of study methods did show a trend toward improvement with time, but this trend was not significant (r=–0.211, P=0.110; Figure 4).
Descriptive Review of the Findings
Despite the aforementioned issues, the studies we reviewed did provide useful evidence concerning psychoeducational interventions for adults with ASD–3. This evidence will be qualitatively evaluated here by behavioral outcome (see Tables 3 and 4, and Figure 5, for a complete summary of the data).
Activities of Daily Living
Due to a very low proportion of studies that showed a significant effect of the intervention yet showed a very high risk of bias, the quality of the evidence supporting the effectiveness of interventions to improve daily activities in adults with ASD–3 was very low. This behavioral outcome was investigated in nine studies: Edrisinha et al (2011), Goodson et al (2007), Haring et al (1987), Jerome et al (2007), Saiano et al (2015), Siaperas and Beadle-Brown (2006), Smith and Belcher (1985), Van Bourgondien et al (2003), and Vuran (2008). One study involved a social skills training program as the intervention (Siaperas and Beadle-Brown, 2006); the other eight studies focused on behavioral techniques as the intervention (Edrisinha et al, 2011; Goodson et al, 2007; Haring et al, 1987; Jerome et al, 2007; Saiano et al, 2015; Smith and Belcher, 1985; Van Bourgondien et al, 2003; Vuran, 2008). Of the seven studies for which we could calculate an effect size, none showed a significant effect.
Due to a very low proportion of studies that showed a significant effect of the intervention yet showed a high risk of bias, the quality of the evidence supporting the effectiveness of interventions to reduce aggressive/destructive behaviors in adults with ASD–3 was low. This outcome was investigated in 12 studies: Adelinis and Hagopian (1999), Boso et al (2007), Carminati et al (2007), Elliott et al (1994), Fava and Strauss (2010), Kaplan et al (2006), Kennedy (1994), Lundqvist et al (2009), McClean et al (2007), McKee et al (2007), McNally et al (1988), and Reese et al (1998). Two studies used recreational therapies as the intervention (Boso et al, 2007; Lundqvist et al, 2009), seven used behavioral techniques (Adelinis and Hagopian, 1999; Carminati et al, 2007; Elliott et al, 1994; Kennedy, 1994; McClean et al, 2007; McNally et al, 1988; Reese et al, 1998), and three used multisensory rooms (Fava and Strauss, 2010; Kaplan et al, 2006; McKee et al, 2007). Of the 10 studies for which we could calculate an effect size, two showed a significant positive effect (Boso et al, 2007: 2.13 [0.84, 3.45]; Carminati et al, 2007: 1.28 [0.30, 2.26]). Boso et al (2007) included active musical activities (ie, drumming, piano playing, singing) for a predominantly male (87.5% male) group of eight adults (M age=30.2); Carminati et al (2007) included a structured applied behavioral analysis approach to a residential program for a predominantly male (78.9% male) group of 19 adults (M age=39).
Due to a moderate proportion of studies that showed a significant effect of the intervention yet showed a moderate risk of bias, the quality of the evidence supporting the effectiveness of interventions to improve emotional functioning in adults with ASD–3 was moderate. This outcome was investigated in five studies: Campillo et al (2014), García-Villamisar and Dattilo (2010), Gerber et al (2011), Kaplan et al (2006), and Shabani and Fisher (2006). One study used recreational therapies as the intervention (García-Villamisar and Dattilo, 2010), three used behavioral techniques (Campillo et al, 2014; Gerber et al, 2011; Shabani and Fisher, 2006), and one used a multisensory room (Kaplan et al, 2006). Of the two studies for which we could calculate an effect size, both showed a significant positive effect (García-Villamisar and Dattilo, 2010: 1.93 [1.37, 2.48]; Gerber et al, 2011: 1.51 [0.75, 2.28]). García-Villamisar and Dattilo (2010) included leisure activities for a mixed-gender (59.5% male) group of 71 adults (M age=31.49); Gerber et al (2011) included a structured behavioral program (physical agent modalities) that focused on the development of autonomy in a mixed-gender (74.1% male) group of 31 adults (M age=43).
Due to a very low proportion of studies that showed a significant effect of the intervention yet showed a very high risk of bias, the quality of evidence supporting the effectiveness of interventions to improve language and communication skills in adults with ASD–3 was very low. This outcome was investigated in 17 studies: Banda et al (2010), Bebko et al (1996), Breen et al (1985), Cividini-Motta and Ahearn (2013), Elliott et al (1991), Gaylord-Ross et al (1984), Gerber et al (2011), Gilson and Carter (2016), Graff and Gibson (2003), Lee et al (2002), Liu et al (2013), McKee et al (2007), Rehfeldt and Chambers (2003), Sheehan and Matuozzi (1996), Siaperas and Beadle-Brown (2006), and Sigafoos et al (2004a, 2004b). Fourteen of the studies included behavioral programs designed to improve social skills as the intervention (Banda et al, 2010; Bebko et al, 1996; Breen et al, 1985; Cividini-Motta and Ahearn, 2013; Elliott et al, 1991; Gaylord-Ross et al, 1984; Gilson and Carter, 2016; Graff and Gibson, 2003; Lee et al, 2002; Liu et al, 2013; Sheehan and Matuozzi, 1996; Siaperas and Beadle-Brown, 2006; Sigafoos et al, 2004a, 2004b), two included behavioral techniques (Gerber et al, 2011; Rehfeldt and Chambers, 2003), and one included a multisensory room (McKee et al, 2007). Of the 10 interventions for which we could calculate an effect size, three showed a significant positive effect (Breen et al, 1985: 2.71 [0.39, 5.04]; Graff and Gibson, 2003: 5.73 [1.42, 10.03]; Liu et al, 2013: 0.44 [0.01, 0.88]). Graff and Gibson (2003) used preference assessments to increase requesting behaviors for one 20-year-old man; Liu et al (2013) included teaching, modeling, and role playing of social behaviors for a mixed-gender (71.4%) social skills group of 14 adults (M age=24.6); and Breen et al (1985) included a social skills training program for four men (M age=18.75) that included direct instruction, modeling, and prompting in a job setting. All 17 of the interventions involved behavioral techniques (ie, directness, instruction, modeling, and prompting), but none were explicit as to whether they were practical applications of applied behavioral analysis.
Due to a very low proportion of studies that showed a significant effect of the intervention yet showed a high risk of bias, the quality of evidence supporting the effectiveness of interventions to reduce self-injurious behaviors in adults with ASD–3 was low. This outcome was investigated in 14 studies: Baker et al (2005), Carr et al (1997), Elliott et al (1994), Hagopian et al (2011), Kennedy (1994), Kuhn et al (1999), Lundqvist et al (2009), McClean et al (2007), McKeegan et al (1987), McNally et al (1988), Smith (1986, 1987), Smith and Coleman (1986), and Wong et al (1991). One study used recreational therapies as the intervention (Lundqvist et al, 2009), and 13 used behavioral techniques (Baker et al, 2005; Carr et al, 1997; Elliott et al, 1994; Hagopian et al, 2011; Kennedy, 1994; Kuhn et al, 1999; McClean et al, 2007; McKeegan et al, 1987; McNally et al, 1988; Smith 1986, 1987; Smith and Coleman, 1986; Wong et al, 1991). Of the 10 studies for which we could calculate an effect size, one showed a significant positive effect: Baker et al, 2005: 7.13 [2.76, 11.49]. Baker et al (2005) reduced coprophagia in one 45-year-old man by introducing flavorful meal options.
Due to a low proportion of studies that showed a significant effect of the intervention yet showed a high risk of bias, the quality of evidence supporting the effectiveness of interventions to reduce stereotypy/mannerisms in adults with ASD–3 was low. This outcome was investigated in eight studies: Duker and Schaapveld (1996), Elliott et al (1994), Fava and Strauss (2010), Gerber et al (2011), Hanley et al (2000), Kennedy (1994), McKeegan et al (1984), and Moore (2009). Seven studies used behavioral techniques as the intervention (Duker and Schaapveld, 1996; Elliott et al, 1994; Gerber et al, 2011; Hanley et al, 2000; Kennedy, 1994; McKeegan et al, 1984; Moore, 2009), and one used a multisensory room (Fava and Strauss, 2010). Of the seven studies for which we could calculate an effect size, two showed a significant positive effect (Gerber et al, 2011: 0.87 [0.17, 1.57]; McKeegan et al, 1984: 4.64 [0.61, 8.68]). Gerber et al (2011) was a structured behavioral program (autism program with a structured method) that focused on the development of autonomy in a mixed-gender (74.1% male) group of 31 adults (M age=43 years), and McKeegan et al (1984) used a nonexclusionary time-out procedure on one 28-year-old man.
Due to a very low proportion of studies that showed a significant effect of the intervention yet showed a very high risk of bias, the quality of evidence supporting the effectiveness of interventions to improve vocational skills in adults with ASD–3 was very low. This outcome was investigated in six studies: Bennett et al (2010), Hume and Odom (2007), Lattimore et al (2008, 2009), Liu et al (2013), and Smith and Coleman (1986). One of the studies used a social skills program as the intervention (Liu et al, 2013), and five used behavioral techniques (Bennett et al, 2010; Hume and Odom, 2007; Lattimore et al, 2008, 2009; Smith and Coleman, 1986). Of the four studies for which we could calculate an effect size, only one showed a significant positive effect (Smith and Coleman, 1986: 5.12 [0.06, 10.18]). The intervention in that study involved on-the-job training with role play, token economies, and differential reinforcement of behaviors for three adult males (M age=26 years).
To our knowledge, this is the only review of the efficacy of available psychoeducational interventions for adults with ASD–3. This is not altogether surprising, as published studies into this research niche are rare in comparison to the extensive body of literature on interventions for children with ASD or adults with ASD–1 and –2. Following a broad search, we found only 56 relevant studies, published in the past 50 years, that attempted to quantitatively test the effects of psychoeducational interventions on adults with ASD–3.
Of the seven outcome domains studied (activities of daily living, aggressive/destructive behaviors, emotional functioning, language/communication skills, self-injurious behaviors, stereotypy/mannerisms, and vocational skills), only moderately reliable evidence, per Cochrane criteria, existed to support the effectiveness of interventions designed to improve emotional functioning in adults with ASD–3; reliability of evidence for all other domains was assessed as low or very low. Despite the general lack of reliable evidence to support specific interventions, we propose that this review is useful as a guide for future intervention studies involving the ASD–3 population because it provides some insight into how such studies should be better designed.
Considerations for Future Research Topics
Other Cultural/Gender Groups
The studies reviewed here involved males from Western countries, particularly the United States, almost exclusively. Females with ASD–3 have been suspected as having different clinical phenotypes and psychosocial factors from males with the same diagnosis (Lai et al, 2015) and arguably are exposed to different sociocultural environments and expectations in most cultures (Lips, 2017). Gender, ethnic/cultural, and socioeconomic differences are, therefore, likely to be worthwhile factors for investigation, specifically in terms of how these differences may moderate intervention efficacy (Gerber et al, 2017; Singh and Bunyak, 2019).
The studies we reviewed did not explore interventions that target a wide range of behavioral outcomes. Interventions should be studied that target skills crucial to daily life, which include food preparation, cleaning and household chores, personal hygiene and grooming, home and community safety awareness, budgeting and banking, medication management, shopping, and managing appointments; vocational skills, which include applying for jobs, learning to select professional attire, collaborating and interacting with coworkers, and managing job stress; and neurocognitive skills, which include attention/executive functioning, psychomotor abilities, and learning/memory.
Other Intervention Methods
The majority of studies we reviewed tested only applied behavioral analysis and cognitive-behavioral techniques; thus, other intervention methods warrant future study. Many well-known treatments based on behavioral principles (including pivotal response treatment [Koegel et al, 1999], verbal behavior intervention [Skinner, 1957], and relationship development intervention [Gutstein, 2009]) have not yet been studied in adults with ASD–3. Moreover, several treatment modalities that are commonly used in children with ASD (including floortime/developmental, individual-differences, relationship-based therapy [Solomon et al, 2007], speech-language therapy, occupational therapy, and physical therapy) have also not yet been modified for and tested in adults with ASD–3. Finally, in our search, we came across studies reporting treatments for caregivers of adults with ASD–3 as the primary participants; although these were outside the scope of our review, these types of treatments could also be expected to be influential in improving the lives of individuals with ASD–3.
Considerations for Future Methodologies
Based on our review, it is clear that studies of psychoeducational interventions for adults with ASD–3 should be designed to be conducive to and report high-quality evidence, even when investigating this challenging participant population (for a summary, see Figure 6).
Although randomized controlled trials are the gold standard in intervention research, they may not be feasible for the early evaluation of interventions. Other study designs such as clinical case reports, within-subjects and between-groups experimental studies, and pilot studies may provide a good balance between investigative rigor and practicality (Skolasky, 2016; Smith et al, 2007).
Data Analysis and Reporting of Results
There are several ways in which future studies of interventions for adults with ASD–3 could minimize issues relating to the analysis and reporting of results. First, it would be helpful if studies used both visual and quantitative analyses to gain the most accurate inferences from the data and to allow for broader conclusions to be made across studies (Skolasky, 2016).
Second, future studies should attempt to be more rigorous in their handling of missing data. Relevant to this, the ASD–3 population presents a number of logistical challenges, including, but not limited to, issues related to transportation, which increase the likelihood of missing data. However, it is important that future studies make careful attempts to minimize missing data and address whatever issues arise using rigorous statistical methods (Skolasky, 2016). At the very least, missing data are a limitation that should be acknowledged. We are optimistic that future initiatives will more effectively reduce the impact of missing data, as widely used statistical packages such as R (R Core Team, 2018) allow researchers with no statistical background to effectively analyze challenging data sets, including those involving small sample sizes and case studies with missing data (Skolasky, 2016).
Third, although interventions may not show a significant effect size, they may still lead to meaningful behavior change. Thus, future studies should include mixed quantitative and qualitative methodologies so that any clinical impact (even if not statistically significant) may be comprehensively reported.
Documentation of Methodologies and Procedures
It would be helpful if researchers documented detailed methodologies so as to allow other groups to replicate the results and translate the findings to clinical practice. First, it would serve the field well to standardize how participants are described. Many inconsistencies in reporting, to date, may be attributable to journals’ adherences to different style manuals: for example, the American Medical Association (2007) requires that authors state how many participants were selected and how many did not agree to participate, whereas the American Psychological Association (2010) does not have this requirement. Going forward, it would help to address inconsistencies in reporting if journals were to implement reporting standards like those set forth in the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement (Liberati et al, 2009) and the Cochrane template (Higgins and Green, 2011); this could include a description of the sample, geographic location, setting, method of recruitment, and detailed inclusion and exclusion criteria.
Second, future studies should attempt to be more thorough in reporting their intervention procedures so that researchers and clinicians alike can make use of their findings. Studies should also provide assurances of treatment fidelity and coding reliability to ensure that interventions are delivered and measured as intended. Specifically, a full description of intervention time lines (ie, intensity and duration of treatment), adaptations, and modifications should be provided along with reporting of relevant co-interventions.
Limitations of This Review
Our literature search process had limitations. First, our English-language requirement clearly biased our search toward Western populations and Western investigators. In the future, electronic translation should enable access to scientific literature from different countries.
Second, our heavy reliance on an electronic search was also a key limitation. Despite using what we considered were broad search terms, the electronic search failed to identify 10 studies that we identified as relevant in our manual search. This limitation of the electronic search probably has several bases, including the challenges of using an electronic search for materials that were produced before the electronic publishing era, the inconsistency in the type of information available in digital form, and the coding of potentially relevant studies. Because coding and tagging inevitably cannot capture all variables that may be of interest, we anticipate that the increasing use of full-text searches using synonyms may help address this pitfall.
Third, we required the literature to be peer reviewed. Although peer review helps ensure scientific rigor, it is hardly a guarantee of quality. We suspect there may be studies that could contribute to our knowledge of interventions for this population that were not peer reviewed, and therefore were not taken into consideration. We suspect a fundamental problem could be that many of the efforts into this field of research have not been documented. We are personally aware of several clinicians and educators who are designing and implementing interventions that seem to be successful, but, for various reasons, have not been documented or published. For these and other reasons, we believe this current review necessarily underestimates the achievements made in the field as a whole.
Although we found moderately reliable evidence to support the effectiveness of interventions designed to improve emotional functioning in adults with ASD–3, in general, the available literature on psychoeducational interventions for adults with ASD–3 was extremely limited and presented significant methodological limitations. Given the poor prognosis for adults with ASD–3, it is vitally important to continue to design and test targeted, scalable interventions for this often-overlooked clinical population. As we continue to improve methodological standards leading to the standardized practice of full and accurate reporting, we are optimistic that there will be more evidence-based interventions to help improve the lives of individuals with ASD–3.
The authors thank Alan Gerber, PhD, Jeff Sigafoos, PhD, Kara Hume, PhD, Devender Banda, PhD, Carly Gilson, PhD, and Shari McKee, PhD, who responded to our requests for additional information. The authors also thank the faculty and staff of the Johns Hopkins School of Medicine, Department of Neurology’s, Division of Cognitive Neurology/Neuropsychology and the Division’s New York Educational Program. The authors particularly thank Nancy Grund, Cristiana Camardella, LaQuata Pascarell, Damaris Frias, Olivia Pullara, Kathleen Keller, and Jessica O’Grady for their support of this project.
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Keywords:Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved
autism; psychoeducational intervention; applied behavioral analysis; behavioral training