Family level processes associated with outcomes for individuals with autism spectrum disorder: A scoping review

Research in Autism Spectrum Disorders 53 (2018) 41–52

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Research in Autism Spectrum Disorders journal homepage: www.elsevier.com/locate/rasd

Family level processes associated with outcomes for individuals with autism spectrum disorder: A scoping review

T

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Jessica L. Greenleea, , Marcia A. Wintera, Joshua John Diehlb,c a b c

808 West Franklin St., Box 842018, Department of Psychology, Virginia Commonwealth University, Richmond, VA 23284, USA 2505 E. Jefferson Blvd., LOGAN Community Resources, Inc., South Bend, IN 46615, USA Master of Autism Studies Program, Saint Mary’s College, Notre Dame, IN, USA

A R T IC LE I N F O

ABS TRA CT

Keywords: Autism spectrum disorder Family Family systems theory Family functioning Family processes

Background: Families of individuals with autism spectrum disorder (ASD) face distinct challenges, and there is a need for research that attends specifically to the family. Despite the recognition of reciprocal influences in the family, research on families of individuals with ASD has tended to focus on child effects within a dyadic subsystem and not necessarily family effects. Thus, this review focuses on whether and how family processes are associated with the behavioral, social, and/or emotional development of individuals with ASD. Method: A scoping review was conducted to synthesize existing empirical literature regarding links from family functioning to individual outcomes. Family systems approaches are used along with ecological models to provide an inclusive, guiding framework for research design and interpretation of findings in family-based ASD research. Results: Results suggest that family-wide factors such as adaptability, cohesion, social support, dynamics, and functioning may be important for child development. However, the heterogeneity of the body of literature reviewed makes definitive conclusions difficult. Conclusions: Recommendations for future research, including the need for theoretically grounded, developmentally appropriate, models that highlight the unique strengths, challenges, and cultural influences of families of an individual with ASD are discussed.

The family is the primary context for behavioral, emotional, and social development and family processes are critical to the healthy adaptation and development of children (Bronfenbrenner, 1986; Cowan & Cowan, 2003). When families function well, they act as a source of social interaction and emotional security, provide structure for routines, social norms, beliefs, and cultural values, and ensure the health and safety of family members (Guralnick, 2006). Policy changes such as the Individuals with Disabilities Education Act (IDEA) and trends in clinical practice toward family-centered care suggest a growing recognition of the family as a key context when considering the developmental outcomes of individuals with neurodevelopmental disabilities, including Autism Spectrum Disorder (ASD; Gabovitch & Curtin, 2009; Hecimovic & Gregory, 2011) Family processes have been implicated in the mental health and well-being of individuals with chronic illness and neurodevelopmental disabilities ranging from asthma to ADHD, developmental delay, and Down Syndrome (Gerstein & Crnic, 2016; Guralnick, Neville, Connor, & Hammond, 2003; Kaugars, Klinnert, & Bender, 2004; Schroeder & Kelley, 2009; Van Hooste & Maes, 2003). The consistent importance of the family for individual outcomes suggests the potential role of the family for those with ASD as well. From the choice of intervention services to management of daily care strategies, families are a critical component of care for individuals with ASD. Given that the family is an essential context to the lives of individuals with ASD throughout the lifespan, understanding

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Corresponding author. E-mail addresses: [email protected] (J.L. Greenlee), [email protected] (M.A. Winter), [email protected] (J.J. Diehl).

https://doi.org/10.1016/j.rasd.2018.06.002 Received 20 December 2017; Received in revised form 28 April 2018; Accepted 11 June 2018 Available online 16 June 2018 1750-9467/ © 2018 Elsevier Ltd. All rights reserved.

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how that context influences an individual’s well-being is a critical component to the successful development and implementation of intervention services for those with ASD (Rosenbaum, 2011). A critical component of family-centered practice is the understanding that children develop best when given the opportunity to “live in a family structure and enjoy a rich array of interaction and activity grounded in the family’s culture and beliefs” (p. 114; Hecimovic & Gregory, 2011). This suggests that research, policy, and clinical care should include the needs of the entire family system when considering outcomes for all individuals, including those with ASD. Calls for family systems (FS) approaches to ASD research and practice are not new (e.g., Head & Abbeduto, 2007; Morgan, 1988) and continue to be prevalent (e.g., Tint & Weiss, 2016). Family systems theories, which view the family as a complex, integrated whole and hypothesize that the health and well-being of family members are linked (Cox & Paley, 1997; Seligman & Darling, 2017), are likely to offer an organizing – yet dynamic and flexible – approach for ASD researchers. For example, Cridland, Jones, Magee, and Caputi, (2014) specifically describe the many benefits of FS approaches for clinical support services, future research, methodological applications, and statistical recommendations. Indeed, empirical research is increasingly using FS and ecologically-informed approaches and including family variables as important environmental factors (e.g., Derguy, M’Bailara, Michel, Roux, & Bouvard, 2016). One of the benefits of an FS approach is the theoretical and methodological distinction made between family- and dyadic-level processes. Rooted in family therapy, a FS perspective capitalizes on what clinicians have known for some time, that individual outcomes must be contextualized within the family system and that individual change is often directed through changes in the family (e.g., emotional climate of the family, organization, routines, relationships; Minuchin, 1985). A family systems perspective views the family as an interactive, interdependent, and reactive unit in which something that affects one member in the family will affect all members of the system (Goldenberg & Goldenberg, 2012; Seligman & Darling, 2017). FS approaches reject the notion that dyadic relationships represent the broader family system, instead focusing on the interrelations between all members the system, defining the family as a complex, integrated whole (Seligman & Darling, 2017). Thus, the family becomes the unit of measurement and analysis independent of the individual or smaller dyadic subsystems within the family (Cook, 2001). Since all members are embedded within the large family system, the processes of the family unit cannot be inferred from these smaller units of analysis (Parke, 2004). Empirical evidence in typically developing children suggests family level processes such as group chaos, family conflict, and negative family interactions are risk factors for poor psychosocial functioning, coping, and health behaviors (Alderfer et al., 2008; Repetti, Taylor, & Seeman, 2002). While dyadic-level processes or subsystem relationships (parent-child, marital) are important to consider, it is equally as important to recognize family-level processes as distinct proximal influences on individual outcomes. One hypothesis born of a FS approach is that having a family member with ASD influences family processes. Evidence has consistently supported the notion that caring for an individual with ASD can have negative effects on members of the family and aspects of the family system as a whole. For example, Karst and Van Hecke (2012) reviewed the literature on the impact of ASD on the family and found increased parenting stress, poorer parent mental health, and decreased family quality life in families of an individual with ASD; families also experienced mounting time pressure and significant financial burden related to lifelong care for their loved ones with ASD. The concept of family well-being has also received attention. A recent review of findings suggests that having a child with ASD is linked to outcomes for sub-systems within the family unit, such as increased marital strain, poor parent-child relations, and adverse child-sibling relations (Tint & Weiss, 2016). Importantly, the literature to date has largely focused on the impact of specific characteristics of the individual with ASD (e.g., age, sex, co-occurring physical and mental health problems, ASD severity, and adaptive functioning) on parent, relational, and family well-being. Challenging or aggressive behaviors have been examined extensively and linked consistently with poor parent mental and physical health, increased caregiver burden and stress, and sibling anxiety (Tint & Weiss, 2016). Finally, family functioning has been investigated as a correlate of ASD-related challenges, and recent research points to a negative relationship between child behavior problems and family functioning that is mediated by parent depressive symptoms (Jellett, Wood, Giallo, & Seymour, 2015). Thus, the pathway from child effects to dyadic and family functioning has been the focus of research and continues to be an important area of investigation. Less is known, however, about the opposite direction of effects: the influence of family processes on the outcomes of individuals with ASD. The ecological model of ASD posits that the appropriate unit of analysis is the interaction between the individual and his/ her environment, which includes the family system (Danforth, 2013). Thus, the focus is on the interconnected and reciprocal influences of the individual and the various environmental systems as they can be leveraged to explain both the proximal and distal impact of subsystem relationships and broader units, like the family, on the behavior and development of the individual with ASD (Danforth, 2013). For instance, challenging behaviors in individuals with ASD may contribute to poor family functioning which then may impact a families’ ability to meet the daily care needs of the individual, thus impacting all members of the family system including the individual with ASD. Indeed, studies focused on other developmental disabilities demonstrate the utility of this approach. For example, results from a longitudinal study of children diagnosed with Down syndrome and their families indicated that change over time in children’s functioning (communication, daily skills, and socialization) were not predicted by cognitive assessments in infancy but were predicted by measures of family cohesion and mother-child interaction (Hauser-Cram et al., 1999). Key to fulfilling a true FS approach includes examination of how the family system impacts outcomes for those with ASD. While a large body of literature has examined the path from child effects to family and subsystem outcomes, including several reviews of these literatures (e.g., Cridland et al., 2014; Karst & Van Hecke, 2012; Tint & Weiss, 2016), the evidence surrounding family effects to ASD outcomes has not been explicitly synthesized. The tendency to focus on child effects and on dyadic subsystems has limited our understanding of the dynamic, transactional nature of child and family factors in the development of individuals with ASD (Cridland et al., 2014; Hastings, Petalas, Jones, & Totsika, 2014; Sameroff, 2009); however, reasons for this focus may be historical. Psychoanalytic perspectives popularized by Bruno Bettelheim on the etiology of ASD considered poor parenting the cause (Bettelheim, 1967; 42

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Kanner, 1949). Symptoms of ASD were conceptualized as responses to cold and detached parenting, positing problems in the parentchild relationship as the underlying mechanism causing ASD (Roser, 1996). As such, research delving into how constructs surrounding parent-child relationships and other family processes influence ASD outcomes has – understandably - been limited. Moreover, the lack of focus on parent and family influences may have been further fostered by the purported underlying genetic mechanisms of ASD. It has been suggested that the underlying neurodevelopmental deficits and problems with social motivation and engagement are primarily biological in nature, which may limit the extent to which environmental factors such as family processes may be influential in the developmental trajectories of those with ASD (e.g., van IJzendoorn et al., 2007). There is growing empirical support, however, for the role of parents and the family in ASD related phenotypes throughout the lifespan (e.g., Baker, Seltzer, & Greenberg, 2011; Greenberg, Seltzer, Hong, & Orsmond, 2006), suggesting that family factors may exacerbate or ameliorate symptoms and areas of functioning that affect the daily lives of individuals with ASD. Furthermore, genetic factors only account for moderate amounts of variance ASD-related outcomes (Hallmayer et al., 2011). We know that parenting or other family factors do not cause ASD, especially in the context promoted by Bettelheim, and that genetic factors play an important role in the ASD phenotype; however, emerging literature increasingly suggests that families can have an impact on the development of individuals with ASD. In thinking about how family processes may be associated with outcomes for individuals with ASD, it is important to consider the broader cultural factors that shape those family processes. Recent scholarship has pointed to the influence of culture in families’ interpretation of an ASD diagnosis, social acceptability of the diagnosis, provisions of services for the affected individual, and interpretation of various ASD related behaviors (Freeth, Milne, Sheppard, & Ramachandran, 2014). The way in which culture influences family processes in ASD are likely complex but nonetheless important. Parents, family members, and communities make choices and act in ways they believe will best help their child with ASD; those beliefs and practices vary widely and are likely highly influenced by culture (Ravindran & Myers, 2012). Families’ beliefs about disability arise from broader, cultural beliefs and values as well as societal norms dictated by political and social environments (Ravindran & Myers, 2012). This perspective suggests that the course of ASD over the lifespan is dictated by parent and family values, beliefs, and norms that are part of the culture in which the family resides. Thus, a deep understanding of family processes in families with an individual with ASD should include culture as a part of the explanatory process. 1. Current review Recent reviews of ASD family literature (e.g., Cridland et al., 2014; Karst & Van Hecke, 2012; Tint & Weiss, 2016) have focused on the impact that having a child with ASD has on parent, sibling, and family outcomes, but there has not been a synthesis of the evidence regarding the role of family processes on outcomes for those with ASD. Therefore, the goal of the current review was to answer calls by Cridland et al. (2014) and others to utilize a common theoretical frame of reference to uncover patterns in existing research. In particular, the aim was to determine whether existing family-focused studies provide evidence that family level processes are associated with the behavioral, emotional, and/or social development of individuals with ASD. A scoping review methodology was employed because it offers a rigorous, replicable method of synthesizing research to clarify complex questions and identify gaps in the literature. A scoping review aims to address, synthesize, and map the key concepts in a particular literature in order to summarize and disseminate research findings surrounding a broad topic beyond the effectiveness or experience of intervention practices (Arksey & O’Malley, 2005; Peters et al., 2015). By synthesizing the empirical literature in this way, we endeavored: (1) to determine the role of family level processes on outcomes for those with ASD from a FS perspective; (2) to determine whether and how culture has been integrated into discussion of family processes in ASD families, and (3) to provide suggestions for future research. 2. Method 2.1. Search procedure Electronic database searches conducted July-December of 2017 served as the primary method for identifying eligible studies. Comprehensive searches were conducted in PsychINFO, PUBMED/MEDLINE, ERIC, and CINAHL. Given our interest on studies couched in family theories, in particular, primary search terms included family functioning, family adaptability, family cohesion, family conflict, family climate, family environment, family relations, family resilience, and family quality of life. Each of the primary search terms was combined with the secondary search terms autism*, Asperger, Pervasive Developmental Disorder, and developmental disability, resulting in a total of 80 searches. Search limiters were applied to exclude studies not written in English and published before 1994 to reflect diagnostic criteria in line with the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV; American Psychiatric Association, 2000) or later. Manual searches of extracted papers were also conducted as warranted. 2.2. Inclusion and exclusion criteria The current review sought to examine only studies that were couched in family theory and those in which family variables were theorized and/or operationalized as the independent variable. Studies were included if they: (1) included a sample of individuals with ASD, Autistic Disorder, Asperger Syndrome, or Pervasive Developmental Disorder-Not Otherwise Specified, (2) examined a family level construct as the predictor variable and child level construct as the outcome variable, (3) were written in English, (4) were published in a peer-reviewed journal, (5) were quantitative or qualitative in nature, and (6) were published between 1994 and 2017 (i.e., limited to DSM-IV-TR [2000] or DSM-5 [American Psychiatric Association, 2013] diagnostic criteria for ASD). Studies that 43

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Fig. 1. PRISMA flow diagram for article selection.

examined a family level construct as the independent variable and a child level construct as the outcome variable were the target of this review. As such, studies that included parent, sibling, or family constructs as the outcome were not included. For example, a recent study by Ekas et al. (2016) used family cohesion to predict mental health outcomes of mothers of children with ASD. While the study used a family level construct as the independent variable (family cohesion), the outcome was related to mothers instead of the individual with ASD and for that reason the study was excluded from this review. In addition, studies were excluded if they included only genetic or neuroimaging variables or examined an intervention program or trial, both of which were beyond the scope of this review. More specifically, intervention research was excluded because the focus of interventions would be deliberately changing the behavior or indicator of interest in the individual with ASD, whereas the purpose of this review was synthesizing observational (i.e., non-experimental) research designed to understand whether family-level processes are associated with outcomes for individuals with ASD. Finally, studies that examined dyadic subsystems such as marital relationships, siblings, or characteristics of the parent-child relationship as the independent variable were excluded from the study. This also included studies that used expressed emotion (EE) as a marker of family climate. While expressed emotion has been used extensively in ASD samples (see Romero-Gonzalez, Chandler, & Simonoff, 2018 for a review), yielding interesting results, traditional conceptualization highlights EE as a description of the affective relationship between two individuals (usually the mother and child), which is not necessarily representative of the family system as a whole. In addition, the accuracy of the emotional over-involvement component of EE for reflecting family interactions has been questioned (Weston, Hawes, & Pasalich, 2017). 2.3. Data extraction and management As shown in Fig. 1, a total of 1220 articles were identified through the electronic searches, while an additional 3 were identified from searching through references. Of these 1223 studies, 116 were duplicates and removed from screening. Of the remaining 1107 articles, 1021 were excluded based on an initial screening of the title, such that the title revealed information that clearly showed the study failed to meet inclusion criteria (e.g., the title indicated that the study focused on an intervention trial or a different 44

45

Community sample (n = 149)

Clinical sample (n = 322)

Community sample (n = 291)

Cohort Study (n = 209)

Clinical sample (n = 90)

Community sample of kids with disabilities (n = 84)

Clinical sample of children with ASD and anxiety (n = 79) Community sample of children with ID or ASD (n = 59 w/ ASD)

Community sample (n = 967)

Baker et al. (2011)

Kelly et al. (2008)

Khanna et al. (2014)

Midouhas et al. (2013)

Stoppelbein et al. (2016)

Stoutjesdijk et al. (2016)

Van Steensel et al. (2017)

Zablotsky et al. (2015)

Hierarchical growth curve modeling Hierarchical regression

L

Multivariate logistic regression

C

Ages 6-17 84% male 70% White

Logistic regression

C

Ages 4-18 (M = 11.04)

Multilevel modeling

L

L

Cross-lagged path analysis

t-test; One-way ANOVA

C

C

Structural Equation Modeling

Path analysis; hierarchical regression

L

C

Data Analysis

Study Design

Ages 7-18 (M = 11.76)

Ages 18-65 (M = 30.76) 61% male 80% White Collected at ages 3, 5, & 7 83% male Ages 6-12 (M = 8.68; 80% male 55% White, 44% African American) Mage = 9.8 85% boys

Ages 10-22 (M = 14.77 at first wave) 74% male 91% White Ages 6-16 (M = 10.9)

Sample Demographics

Note: C = cross sectional study; L = longitudinal study.

Weiss et al. (2016)

Sample

Reference

Table 1 Characteristics of studies reviewed.

Family Quality of Life

Family Impact of ASD

N

Single (unknown)

Single (91% mother)

Multiple (parents and children)

Parent & Teacher report

Family Functioning

Family Functioning

Single (84% mother, 8% grandparent, 7% father, 1% other)

Single (parent report)

ASD Severity (mild, moderate or severe)

Maladaptive behaviors (SIB-R) & psychiatric problems via parent report

ASD Symptom Severity (ADIS-C/P interview)

Classroom problem behavior (TRF)

Internalizing & Externalizing symptoms (CBCL)

Child Psychopathology (SDQ)

Health related Quality of Life (SF-12v2) & Coping (Brief COPE)

ASD Symptomatology (ASASD) & Anxiety/ depression (SDQ-P)

Single (unknown)

Single (self-report)

Behavior Problems (SIBR)

Outcome measure

Single (mothers only)

Informant

Family Routines

N

N

Y 15% had ADHD, 56% had ASD, 6% ODD, 3% anxiety

Y (ASD group & age, gender matched TD controls, both groups n = 45)

Household chaos

Y demographic comparison only

Family cohesion & family conflict

N

Family social support

Family adaptability

N

N

Family variable & measure used

Presence of comparison group?

Poor family communication, discordant partner relationships, and lack of social support were most strongly associated with future problem behaviors Family functioning was not related to treatment effectiveness; family functioning was related to anxiety symptom trajectory over time Family quality of life did not differentiate between youth with and without co-morbid psychiatric problems or maladaptive behaviors Family impact specifically differentiated between child having moderate or severe ASD

Curvilinear relationships: high and low routines – more internalizing; moderate routines – more externalizing

Higher family conflict related to more anxiety/depression, which was then related to more severe ASD symptoms) Greater social support from family associated with higher mental and physical QOL; negatively related to maladaptive functioning Higher levels of chaos related to more conduct problems

Better family adaptability at T1 was related to fewer behavior problems at T3

Results

J.L. Greenlee et al.

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Table 2 Definitions and assessment methods of family process variables. Family Variable

Definition

Assessment method

Citation

Cohesion

Family relationships characterized by closeness and support

Kelly et al. (2008)

Family social support Family routines

Family impact

Support availability and adequacy from family members Observable, repetitive behaviors including the child and at least one adult (may include other family members) that occur with predictability Questions regarding the impact of ASD on the family unit

Family Environment Scale (Moos & Moos, 1994) Subscale of the MSPSS Child Routines Questionnaire (Sytsma, Kelley, & Wymer, 2001).

Adaptability

Ability of a family to change in the face of stress

Zablotsky et al. (2015) Baker et al. (2011)

Family functioning

Quality of life based on organization, communication, relationships, responsiveness, and social support Family characterized by fighting, arguing, etc.

Survey designed for the National Survey of Children with Special Healthcare Needs Family Adaptability and Cohesion Evaluation Scales – 2nd edition (Olson, Portner, & Bell, 1982) Dutch Family Questionnaire (Scholte & Van der Ploeg, 2013) Family Environment Scale (Moos & Moos, 1994) Confusion, Hubbub, and Order Scale (Matheny et al., 1995) Beach Center Family Quality of Life Scale (Hoffman et al., 2006)

Conflict Household Chaos Family Quality of Life

Home environment characterized by the level of noise, disorganization, regularity and routines. Indicates how satisfied one is with different aspects of one’s family

Khanna et al. (2014) Stoppelbein et al. (2016)

Stoutjesdijk et al. (2016) Kelly et al. (2008) Midouhas et al. (2013) Weiss et al. (2016)

population). Forty-three studies were excluded after abstract review, and the remaining 34 articles were read in full to determine eligibility for inclusion in this review. Of the 34 full-text articles reviewed, 25 were excluded, resulting in 9 studies eligible for inclusion in the review. Data were extracted from studies in a systematic way, summarizing study characteristics and general findings on an extraction sheet developed specifically for this review. Bibliographic information was recorded along with methodological characteristics (e.g., cross-sectional or longitudinal), measures used, and sample characteristics (e.g., sample size, demographics, reporters). The theoretical framework of each study was recorded if applicable as well as the unit of measurement. 3. Results 3.1. Description of included studies 3.1.1. Family theory Of the nine reviewed studies (Table 1), three explicitly used family theory to ground the rationale for their study and interpret the findings (Baker et al., 2011; Kelly, Garnett, Attwood, & Peterson, 2008; Stoutjesdijk, Scholte, & Swaab, 2016). While the word “family” was used in the remaining nine studies, the theoretical focus was not based in a family-specific framework (i.e., did not approach the study from a systems or holistic group approach). 3.1.2. Measure selection & informant In general, there were two broad categories of family variables used across the studies: family process variables and markers of family climate. Within the nine studies, eight different measures were used to assess family process variables (Table 2). These constructs fit within larger family systems theories as important to the overall functioning and well-being of the family (see Table 2; Olson, 2000; Seligman & Darling, 2017). Household chaos, measured via 4 items on a parent-report questionnaire, was used as a marker of family climate (Midouhas, Yogaratnam, Flouri, & Charman, 2013). Many studies (4/9) focused on behavioral outcomes such as externalizing behaviors, behavior problems, or maladaptive behaviors (Stoppelbein, Biasini, Pennick, & Greening, 2016; Stoutjesdijk et al., 2016; Midouhas et al., 2013; Weiss, Ting, & Perry, 2016). Two studies included ASD symptoms or severity as an outcome (Kelly et al., 2008; Zablotsky, Bramlett, & Blumberg, 2015). Four studies included a measure of mental health (Kelly et al., 2008; Midouhas et al., 2013; Van Steensel, Zegers, & Bögels, 2017; Weiss et al., 2016) and one study examined health related quality of life and coping (Khanna, Jariwala-Parikh, West-Strum, & Mahabaleshwarkar, 2014). The most common outcome measure was the Scale of Independent Behavior. All but two of the reviewed studies relied on single informant, parent/caregiver report of the family level variable and the outcome. Of those eight studies, mothers were the most likely source of data, although a small number of reports from other caregivers were included in some studies (e.g., Stoppelbein et al., 2016; Weiss et al., 2016). One study was single informant but sampled the affected individual with ASD and did not include any caregiver report (Midouhaus et al., 2013). Two studies included more than one reporter [(parent and teacher; Stoutjesdijk et al., 2016) and (parent and child; Van Steensel et al., 2017)] of the outcome while relying on a single informant (parent) for the family level variable. All studies were quantitative in nature. 3.1.3. Demographic diversity In all reviewed studies, the majority of individuals with ASD were boys. With the exception of one study that purposefully 46

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sampled for diversity (Stoppelbein et al., 2016), all studies were at least 70% Caucasian or did not report the racial makeup of the sample. The most common measures of socioeconomic status were maternal education, household income, and/or employment; however, assessment of SES varied widely. Age of participants ranged from three to 65 years across all studies. Eight studies included only children/adolescents or young adults (6–22 years), one study specifically focused on adults (18–65 years), and one study did not report the age of participants. Three studies included a comparison group, primarily for demographic comparison. 3.1.4. IQ and ASD Severity Given the heterogeneous nature of ASD spectrum disorders, we also explored whether or not studies accounted for IQ and/or ASD severity in their design/analysis. Over half the included studies (62%) either controlled for IQ, excluded individuals with co- morbid intellectual disability (IQ < 70), or included IQ in the analysis (e.g., IQ as a moderator). Similarly, 62% of included studies also accounted for ASD severity either including it as a covariate or as an outcome as described above. 3.1.5. Culture None of the studies included in this review examined the role of culture as it relates to family processes in those with ASD. No study included a discussion of culture as a direction for future research. 3.2. : Summary of results of included studies Five studies were cross-sectional in nature and reported on covariation between variables (Table 1). Five studies were longitudinal and predictive in nature (Table 1). The studies reviewed here provide mixed evidence that family level processes play a role in ASD related outcomes. 3.2.1. Behavioral outcomes Several studies included behavioral outcomes such as externalizing behaviors, behavior problems, and maladaptive behaviors. Baker et al. (2011) found changes in behavior problems over three years to be predicted by initial levels of family adaptability and this association was not dependent upon ID status. Compared to typically developing youth, family routines act as a significant predictor of externalizing problems in children with ASD (Stoppelbein et al., 2016). The relationship between family routines and externalizing symptoms was curvilinear such that lowest risk was associated with low and high level of routines while highest risk was present for families with moderate routines. In an examination of problem behaviors in the classroom setting, Stoutjesdijk et al. (2016) found continuity of poor family functioning to be predictive of future classroom problem behaviors in a mixed sample of children with neurodevelopmental disabilities, including ASD. High levels of household chaos, a marker of family climate, was significantly higher for children with ASD compared to TD peers and was further associated with conduct problems during early childhood for those with ASD (Midouhas et al., 2013). In contrast, Weiss et al. (2016) found that family functioning did not differentiate between individuals with and without maladaptive behaviors in a sample of youth with severe intellectual disability (39% had an ASD diagnosis), but the comparability of the mixed sample to ASD-only samples may be limited. 3.2.2. Mental health & quality of life outcomes Several studies found a variety of family process to be related to internalizing symptoms for those with ASD. Similar to their results on externalizing problems, Stoppelbein et al. (2016) reported a curvilinear relationship between family routines and internalizing problems for youth with ASD but not for TD children. Highest risk for internalizing symptoms was related to low or high levels of family routines. In the only study that included self-report from the individual with ASD, more social support from family was a significant predictor of higher mental health quality of life for adults with ASD (Khanna et al., 2014). While family factors were not predictive of response to cognitive behavioral therapy in a group of youth with ASD and anxiety, the anxiety symptoms of children of un-involved families decreased less over time compared to other family types. Children from authoritarian families had the highest anxiety symptoms but their symptoms also decreased the most over time (Van Steensel et al., 2017). Unlike the majority of studies that linked mental health outcomes and family processes, Weiss et al. (2016) found that family functioning did not differentiate between individuals with co-morbid psychiatric problems and those without; however, the study sample included a mixed sample of children with intellectual disability and/or children with ASD, which may have clouded findings specific to children with ASD. 3.2.3. ASD symptoms In addition to behavioral and mental health outcomes, two studies also examined the role of the family in ASD symptom presentation and severity. For example, in a sample of children with ASD, family conflict was indirectly related to ASD symptom severity through child mental health problems (Kelly et al., 2008). Specifically, more family conflict predicted higher levels of anxiety and depressive symptoms, which then predicted higher ASD symptom severity after controlling for several covariates, including intellectual functioning. Of note, the average level of family conflict in this study was not clinically significant, suggesting that youth were sensitive to even mild forms of conflict. In addition, the path from family support and family cohesion to both mental health and ASD symptom severity was non-significant when family conflict was entered into the model. Zablotsky et al. (2015) aimed to identify factors related to parental ratings of ASD symptoms severity in a large sample of youth with ASD. Higher family impact scores were predictive of the highest ASD severity ratings. 47

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4. Discussion The family is the primary environmental context for development for children (Bronfenbrenner, 1986), and thus the interaction between children with ASD and their families is a particularly important avenue of research (Danforth, 2013). As the large number of studies found in our data identification process highlights (see Fig. 1), researchers are increasingly including family variables in studies of individuals with ASD (e.g., Derguy et al., 2016). Nonetheless, most studies focus on child effects, particularly in regards to how having an individual with ASD in the family effects parent, sibling, and family outcomes. As indicated by just nine studies meeting inclusion criteria, there remains the need for more systematic approaches to family research that attend to the other direction of effects (Sameroff, 2009). In response to calls for more FS approaches (e.g., Cridland et al., 2014), we used scoping review to examine the state of evidence regarding associations between family level processes and outcomes of individuals with ASD within family-theory informed studies. Findings to date provide mixed support for family level processes that may be important when considering ASD-related outcomes, including behavioral, mental health, quality of life, and ASD symptom severity; however, more work is needed to understand the mechanisms at play. As research in this area advances, a more unified theoretical and empirical approach may help build a more cohesive knowledge of child-family interaction in ASD contexts. In agreement with more general findings from Cridland et al. (2014), the majority of studies in this review (n = 6) did not specify a theoretical framework guiding the research question or selection of variables. Studies that did refer to theory primarily focused on broad systems and ecological theories of development (Bronfenbrenner, 1986; Olson, 2000; Sameroff, 2009). Such theories are helpful in highlighting the importance of the family context but do less to guide researchers in specific design and methodological approaches, whereas mid-level theories such as family systems would. For example, while all nine studies focused in some way on family-level constructs, none measured these family level variables from more than one family member. In addition, we found no qualitative or mixed-methods studies exploring this question, despite the utility in such approaches for family systems research (Plano-Clark, Huddleston-Casas, Churchill, Green, & Garrett, 2008). We recognize the practical difficulty of such endeavors, particularly in this population. However, given that the unit of interest should match the unit of measurement (Weber, 2010) and that the constructs of interest in many of the included studies – for example, family adaptability and family cohesion - are family-wide, collecting data from multiple family members or in ways designed to capture the family as a group (e.g., observational methods) would likely best measure these constructs. Relying on single informants (typically mothers) provides but a snapshot of a sub-system (e.g., parent-child relationship) within the family unit and/or one person’s perceptions of family-level dynamics. An individual study cannot do all things, of course, which further emphasizes the need for a more coherent and complementary approach across studies. Other family-focused, developmentally sensitive areas of research have grown by doing so. For instance, family mealtime observations have been proposed as a potential method that provides direct observation of family social interaction, family routines, and family identity and has been used in a number of pediatric populations, including asthma, diabetes, and cystic fibrosis (Fiese, Foley, & Spagnola, 2006; Fiese, Winter, Wamboldt, Anbar, & Wamboldt, 2010; Janicke, Mitchell, & Stark, 2005; Patton, Dolan, & Powers, 2008). Mixed-methods research that includes similar observational methodology aimed at capturing familylevel processes will be important to include in future work. A number of factors limit coherent interpretation of this body of results, such as underrepresentation of girls/women with ASD, minorities, any family member other than mothers in the majority of the presented studies; the wide range of ages assessed by most studies; the heterogeneity of operationalization and measurement of family constructs; the inclusion of mixed diagnoses; the inconsistent use of comparison groups; and the reliance on self-report data of these family constructs. Likewise, no clear consensus emerged for measurement of behavioral outcomes, which may be troublesome given the comorbidity of ASD symptoms and behavior (e.g., externalizing problems) and the influence of child characteristics such as developmental age and IQ on outcomes (Bolte & Diehl, 2013). About half of the studies reviewed were measured at a single time point and correlational in nature, eliminating identification of familial factors that may reliably predict ASD related outcomes in children and adults or understanding of the transactional nature between family and individual level outcomes. Recommendations for longitudinal studies are not new to family or ASD research; nonetheless, it bears repeating that longitudinal studies will be critical in moving the family ASD research field forward. It is somewhat striking that none of the studies included in this review examined culture as it relates to family processes in individuals with ASD. Family systems frameworks recognize the pervasive influence of culture on family processes, and there is room within these approaches to integrate cultural values, beliefs, and norms in understanding the family system. Similar to research suggesting that characteristics of ASD typically considered “universal” may actually differ across cultures, it may be that the salient family processes important for the development and adaptation of individuals with ASD are equally as culturally determined (Freeth et al., 2014), Key family processes (e.g., cohesion and communication) may differ according to cultural norms and thus the ways in which those processes impact ASD outcomes may not be equivalent in non-Western cultures (Rothbaum, Rosen, Ujiie, & Uchida, 2002). Family systems approaches are flexible and allow for the cultural variation of family processes to be considered, particularly when taking advantage of within-group studies (as opposed to between group comparisons). Therefore, understanding the family processes important for individuals with ASD must also include the associated cultural norms, beliefs, and values of any given family system. Results of this review must be interpreted in light of its limitations. First, we did not include gray literature (e.g., dissertations, conference presentations, etc.) in searches. It is possible that studies focusing on family level processes as a predictor of ASD related outcomes have been conducted but not published in peer-reviewed journals. Second, search criteria were broad and may have overlooked other relevant keywords for family processes. Moreover, while we were interested in examining the influence of family processes on outcomes for those with ASD, this review included studies that were cross-sectional in nature and thus, directionality of 48

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effect (e.g., family to child outcomes vs. child to family outcomes) could not be inferred. Given that this field of inquiry is relatively new for ASD researchers, the inclusion of cross-sectional associations are important to consider in developing longitudinal research programs better suited to uncover causal mechanisms. We purposefully excluded studies that framed the research question as child effects to family outcomes, even when those studies were also cross-sectional and therefore open to the reverse interpretation. Similarly, we excluded studies that focused on specific subsystems of the family (e.g., parent-child, marital, sibling subsystems) in order to highlight larger family process as they relate to ASD outcomes. It is important to recognize that FS approaches include these subsystem processes. Thus, this review only considers one piece of family systems approaches as called for by Cridland et al. (2014). Finally, like any scoping review, some studies that did not meet our specific inclusion criteria are nonetheless taking strides to advance adjacent work (e.g., Hastings et al., 2014). Consideration of the “file drawer” phenomena, in which the likelihood of publication is greater for studies with statistically significant results compared to null findings (Franco, Malhotra, & Simonovits, 2014), is also warranted given the results of this review. We were only able to identify nine studies that met inclusion criteria over the span of 11 years, with only a few of these studies longitudinal. There are two potential interpretations of this small sample size: (1) that research examining the path from family to child effects has yet to be done, or (2) that this pathway is being studied but has resulted in null findings. If the first is true, the need for additional longitudinal research grounded in FS theory is clear. The latter would suggest, contrary to our hypothesis, that family level processes do not have consistent or statistically strong effects on the development of individuals with ASD; however, it is also worth considering that null findings may be a result of how we operationalize family processes in this population. For example, family cohesion is often defined as the closeness and support felt within a family; although relevant to a broad array of families, it may be that family cohesion manifests differently for families with an individual with ASD. Measures and methods that operationalize cohesion in a specific way may lack validity for this population and not pick up on the unique ways families with an individual with ASD experiences family cohesion. Similar to translating a measure to a different language for use in a different culture, it is important to consider the unique culture of these families. For example, it is important to understand whether and how families with an individual with ASD communicate and display cohesion and warmth in unique ways. Whether null findings are the result of a lack of association or the operationalization of family constructs, inclusion of null findings in the published literature would help clarify the role of family processes in ASD related outcomes. 4.1. Suggestions for future research While the results of this review indicate that the literature does not yet allow conclusions regarding the influence of family processes on ASD-related outcomes, findings also suggest that focusing on family effects is warranted. Inherent in an FS approach is the bidirectional nature between family and child effects. Using FS approaches as a guiding framework for research and intervention is not new (Cridland et al., 2014); however, little attention has been paid to the proposed pathway from a FS perspective nor with a focus on ASD related outcomes. Inclusion of alternative outcomes in future research will also be important. Family level processes may influence social and emotional functioning, but due to the lack of these outcomes so far in research there is limited evidence on which to base conclusions. Given that social and communication deficits are an inherent part of an ASD diagnosis, how family processes can shape and alter those atypical trajectories may have important implications for intervention. For example, the emotional climate of the family directly influences children’s emotion regulation (ER; Morris, Silk, Steinberg, Myers, & Robinson, 2007). There is evidence that individuals with ASD have poor ER and poor ER strategies (Mazefsky et al., 2013) but the influence of family process on the development of ER in children with ASD in particular is currently unknown. To leverage the strengths of a FS approach, future research could benefit from theoretically grounded, developmentally appropriate models that are unique to ASD families in particular. For families of an individual with ASD, an FS approach refocuses the question away from the singular role of parent-child relationships on development to an emphasis on the family as a social system influencing the development of the individual (Parke, 2004). Applying this approach grounds the research in a coherent theoretical framework, changes the unit of analysis, implies alternative methodology and measurement, and broadens the scope of influence on outcomes for these individuals. The unit of analysis in a systems approach is the functioning of the system as a whole. As such, the use of an individual assessment of system-wide functioning does not fully meet this standard and instead calls for multiple perspectives and informants. For example, measuring the level of cohesion within a family would be most accurate not by assessment of a single perspective but from all – or at least several - members of the system. This multi-informant approach not only functions as a key part of FS perspectives but is also considered best practice in assessment of a number of outcomes in children and adolescents (Mash & Hunsley, 2005). Longitudinal methods will also be important when considering the role of the family system in the development of individuals with ASD. Cross-sectional data provide a foundation, but pathways, transitions, and processes can only be understood with longitudinal information. Furthermore, systemic orientations that focus both on content as well as processes suggest the utilization of multiple methods. Adopting a purely quantitative or qualitative approach to studying family systems and processes limits data analysis and interpretation, which has further implications for intervention development and implementation (Plano-Clark et al., 2008). Mixed-methods research takes advantage of the strengths of qualitative and quantitative approaches while also minimizing their weaknesses; it enhances the validity of findings while directly informing theory, and allows for an exploration and modeling of dissonant and discrepant data likely present due to the diversity of families and family processes (Plano-Clark et al., 2008). Previous research highlights the benefits of a mixed-methods approach. For example, Lietz (2007) used quantitative methods to establish an association between family strengths and better family functioning and then qualitative analysis of in-depth family interviews to 49

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explore processes related to family strengths. The use of both quantitative and qualitative methods in this study allowed for a more precise and coherent description of how family strengths relate to overall family functioning compared to the use of a single method in isolation. This review also highlights the need for developmentally appropriate and diverse models of family processes in those with ASD. Age of participants in the reviewed studies ranged from six to 55 years across studies, and several studies included participants across multiple developmental periods. The needs of the individual, their strengths and weakness, relationships with family members, and how the family functions as a unit (including roles and boundaries) change throughout development. Family processes like communication, adaptability, and conflict may look strikingly different when the individual with ASD is in early childhood compared to late adolescence, and research focused on specific developmental periods would produce a clearer picture of those processes. In addition, the inclusion of families other than middle-class, White, American families is crucial to fully and deeply understanding these issues. This review highlights the relative homogeneous population used in family ASD research, with most studies drawing conclusions based on majority Caucasian samples and maternal caregiver reports. Using within-group analytic strategies to focus on cultural processes that affect development in youth with ASD may require alternative recruitment strategies (e.g., homogeneous convenience sampling) (Jager, Putnick, & Bornstein, 2017), utilization of qualitative methods in the beginning, and collaborating with increasingly diverse research teams that include members of the same cultural group being studied (Medin, Bennis, & Chandler, 2010). To compliment studies using within-group strategies in samples of individuals with ASD, future research could use control groups or comparative based research designs to help identify characteristics and family processes unique to individuals with ASD. Last, but not least, family-focused research in ASD would be furthered by adopting approaches designed specifically to be sensitive to the unique cultures of families of a child with ASD. 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