asse2(active) Altiere (2006) - Family functioning and coping behaviors in parents of children with autism

Introduction

  • Research focus: family functioning and coping in families with a child on the autism spectrum; emphasis on both parents (mother and father) rather than only mothers, using a family systems theory lens to understand how cohesion, adaptability, coping strategies, social support, and etiological beliefs relate to developmental outcomes of the family unit.
  • Contextual background:
    • Traditional autism studies concentrated on mother-child dynamics; this work aims to include fathers and compare parental perspectives within the same family (mother vs father).
    • Autism prevalence discussion cites ranges from about 5 per 10,000 to 60 per 10,000 children 18 or younger, illustrating variability in estimated rates and the evolving literature (e.g., American Psychiatric Association, 2000; Fombonne, 2003).
    • Family systems perspective argues that a child with autism is a stressor affecting the entire family system; changes in one member affect the whole system (Sameroff, 1990; Minuchin, 1974).
  • Key theoretical framework:
    • Family systems theory: examine interactions among family subsystems (e.g., marital, parent-child) and the family as a whole; the system is interdependent and dynamic (Seligman & Darling, 1997).
    • Olson, Portner, & Lavee (1985) Circumplex Model: two core dimensions—Cohesion and Adaptability—and a derived outcome variable, Satisfaction with Family Functioning; extremes and mid-points can influence coping and outcomes.
    • Enmeshment vs disengagement (Cohesion) and rigidity vs chaotic adaptability are end-points on the respective continua; optimal functioning is proposed to lie between extremes (Minuchin, 1974; McCubbin & McCubbin, 1988; Seligman & Darling, 1997).
  • Core concepts defined:
    • Cohesion: emotional bonding among family members; scales measure perceived and desired levels of cohesion; extremes include Enmeshed (high cohesion) and Disengaged (low cohesion) vs Balanced mid-range types (Separated, Connected).
    • Adaptability: family’s flexibility/change in response to stress; extremes include Rigid (low adaptability) and Chaotic (highly unstable) vs mid-range structures (Structured, Flexible).
    • The ABCX model of family stress (McCubbin & McCubbin, 1987): A = stressor event (child with autism), B = family resources/crisis meeting capacity, C = family’s definition/interpretation of the event, X = crisis; functioning depends on A, B, C interacting to determine whether stress becomes a crisis.
  • Research questions / hypotheses:
    • Hypothesis 1: Moderate levels of cohesion and adaptability will be associated with higher perceived social support.
    • Hypothesis 2: More coping strategies used by the family predict greater satisfaction with family functioning.
    • Hypothesis 3: Mothers will rate the family as more cohesive and adaptable, employ more positive coping strategies, and perceive more social support than fathers.
    • Hypothesis 4: Mothers will perceive greater social support from family and friends than fathers.
  • Summary of key findings (from Abstract):
    • Enmeshed families tend to implement more positive coping strategies than other cohesion styles.
    • Mothers perceive more social support from family and friends than fathers.
    • Families of children with autism have cohesion/adaptability patterns broadly similar to normed families, but with more chaotic and less rigid tendencies in this sample.
  • Implications: findings emphasize the value of considering both parents, the role of enmeshment as potentially productive for coping in some families, and the need for father-focused social support resources; suggests the family environment remains a critical context for autism outcomes.
  • Ethical and practical considerations:
    • Face-to-face interviews at families’ homes; informed consent; confidentiality; potential burden of discussing stressful experiences; provision of resources and contact information for follow-up (EMU Psychology Clinic).

Theoretical Framework: Cohesion and Adaptability

  • Cohesion (emotional bonding among family members) is defined by Olson et al. as a dimension with multiple levels:
    • Disengaged, Separated, Connected, Enmeshed; extremes include Enmeshed (high involvement) and Disengaged (low involvement).
    • Optimal functioning is often described as a balance between closeness and independence.
  • Adaptability (the family’s ability to change in response to stress):
    • Levels include Rigid, Structure, Flexible, Chaotic; extremes include Rigid (rigid role expectations) and Chaotic (unstable rules and leadership).
    • McCubbin & McCubbin (1988) describe flexible families as highly adaptive, with laissez-faire characterized by moderate predictability and low adaptability; Flexible is considered most effective for disability caregiving.
  • Theoretical rationale for autism context:
    • Well-functioning families reportedly operate with moderate cohesion and adaptability; extreme cohesion or adaptability can be detrimental to child development in autism but some research suggests enmeshment could correlate with higher coping in certain contexts.
    • The literature notes that family environment substantially influences child welfare and development; disruptive patterns can affect trajectories of autism outcomes (Sameroff, 1990).
  • Related literature cited:
    • Minuchin (1974): extremes of cohesion (enmeshment vs disengagement) and rigidity vs chaos in family systems.
    • Seligman & Darling (1997):Ordinary Families, Special Children – families with a disability can function well at moderate levels of cohesion/adaptability.
    • Singer & Powers (1993); Bristol (1984); McCubbin & Patterson (1981, 1983) on coping styles (internal/external coping) and the role of social support.
  • Conceptual links:
    • The ABCX framework (A, B, C) connects with cohesion/adaptability: family resources (B) and meaning (C) interact with the stressor (A) to determine outcome (X), i.e., crisis vs successful adaptation.
    • Social support, coping strategies (F-COPES, PSS-Fa/Fa) function as external resources that influence B and the coping process.

Family Stress and Conception of Autism

  • Family stress literature in autism shows mixed findings on whether autism increases parental stress relative to families with non-autistic children; some studies report higher stress, depression, anxiety, and marital strain, while others show mixed results depending on child age, services, and context.
  • Key research findings discussed:
    • Koegel et al. (1983): some studies show no difference in stress between autism and normative samples; differences found in other samples possibly due to age and service context.
    • Sivberg (2002): autism families experience higher stress and distinct coping strategies (more avoidance) compared to non-autistic families.
    • Sharpley, Bitsika, Efremidis (1997): autism parents report higher anxiety and depression than general population; fathers may have higher stress related to child’s communication abilities and attachment.
  • The balance of biological vs environmental factors:
    • Several studies emphasize that environmental conditions and family dynamics can be powerful predictors of child outcomes, sometimes outweighing early biological status (Wilson, 1985; Sameroff, 1990).
  • Family conception of autism and etiological beliefs:
    • Parents develop explanatory models that help cope with the disorder; common lay theories include birth trauma, genetics, brain damage, environmental factors, and, controversially, vaccines (MMR). Kanner (1943) initially described autism with a biologically informed view, but later public discourse wrongly attributed parental psychopathology as a cause, which modern science rejects.
    • Furnham & Buck (2003) report many parents attribute genetic or congenital damage causes; some still hold onto birth trauma or vaccine-related beliefs; regardless of etiology beliefs, most parents acknowledge no cure exists and intervention varies in effectiveness.
  • Implications for coping and intervention:
    • Parental beliefs about etiology influence treatment choices and coping trajectories; clinicians should acknowledge lay theories and provide evidence-based information while supporting coping and social support structures.

Current Research: Aims, Design, and Hypotheses

  • Aims:
    • Compare contributions from mothers and fathers to family functioning (cohesion and adaptability) and coping strategies.
    • Examine how coping and family functioning relate to satisfaction with family functioning and perceived social support.
    • Explore parental beliefs about the etiology of autism.
  • Design: cross-sectional, mixed-methods study with face-to-face interviews at participants’ homes; data collected from both parents in each family.
  • Sample and recruitment:
    • 26 pairs of parents (52 participants: 26 mothers, 26 fathers) recruited from local autism organizations in southeast Michigan and an autism-focused Yahoo group.
    • Predominantly European-American; two multi-racial and one Arab-American family.
    • Children with autism spectrum disorders aged 3–16 (mean 7.5); 23 boys, 3 girls; average age at diagnosis ≈ 3 years (range 1–6).
    • Inclusion: child meets DSM-IV-TR criteria for autism, Asperger’s, or PDD-NOS; child spends ≥40 hours/week at home with parents; two biological parents in the home and both participate.
  • Instruments used (in Appendix):
    • Family Adaptability and Cohesion Evaluation Scales-III (FACES-III): 40 items; measures cohesion and adaptability; 5-point Likert; scale ranges and reliability reported as: Range 122-162; Mean 149.10; SD 10.44; α = 0.74.
    • Family Crisis Oriented Personal Evaluation Scales (F-COPES): 30 items; five subscales (Acquiring Social Support, Reframing, Seeking Spiritual Support, Mobilizing Family to Obtain/Receive Help, Passive Appraisal); overall α = 0.86; subscale alphas range 0.61-0.81.
    • Perceived Social Support from Family (PSS-Fa) and from Friends (PSS-FR): 20 items each; Yes/No/Don't Know responses; Fa α = 0.90; Fr α = 0.88; Fa–Fr correlation ~ 0.40.
    • Semi-Structured Interview: Appendix A provides prompts for qualitative data on discovery of autism, beliefs about etiology, and learning experiences.
  • Procedure:
    • Data collection involved four questionnaires administered to each parent in random order, followed by separate semi-structured interviews with each parent, conducted in-home.
    • Informed consent obtained; participants could contact the principal investigator or advisor with questions; a ten-dollar pizza gift certificate provided as appreciation.

Method: Participants, Instruments, and Procedures (Detailed)

  • Participants (more details):
    • 26 families; 52 participants (26 mothers, 26 fathers).
    • Child characteristics: 3–16 years old (mean 7.5); 23 boys, 3 girls; mean age at autism diagnosis 3.0 years (range 1–6).
    • Recruitment sources: local autism organizations; Autism in Michigan e-group.
  • Instruments (expanded):
    • FACES-III: 40 items; measures perceived and desired cohesion/adaptability; three scores obtained: Cohesion, Adaptability, and Satisfaction with Family Functioning.
    • F-COPES: 30 items; five subscales; higher scores indicate more positive coping and problem solving; norms established with large samples.
    • PSS-Fa and PSS-FR: 20 items each; response options Yes/No/Don’t Know; measurement of perceived social support from family and friends, respectively.
  • Data collection specifics:
    • Interviews conducted in the family’s home; data included both quantitative scales and qualitative interview data.
  • Ethical considerations:
    • Informed consent; confidentiality with no names on questionnaires; de-identified data; potential distress addressed with resources (EMU Clinic contact).

Results: Scale Data and Descriptive Statistics

  • Scale data (Table 1):
    • FACES-III: # of items = 40; Scale range = 122-162; Mean (SD) = 149.10 (10.44); α = 0.74.
    • F-COPES: # of items = 30; Scale range = 71-138; Mean (SD) = 100.52 (14.79); α = 0.86.
    • PSS-Fa: # of items = 20; Scale range = 1-20; Mean (SD) = 12.81 (5.84); α = 0.91.
    • PSS-Fr: # of items = 20; Scale range = 3-20; Mean (SD) = 14.13 (4.96); α = 0.89.
  • Subscale data (Table 2): Cohesion, Adaptability, and F-COPES subscales with means, ranges, and αs:
    • Cohesion: items = 10; Range 26-50; Mean 40.90; α 0.85.
    • Adaptability: items = 10; Range 11-35; Mean 24.86; α 0.66.
    • Social Support (F-COPES subscale): 9 items; Range 13-43; Mean 27.98; α 0.86.
    • Reframing: 8 items; Range 18-38; Mean 30.00; α 0.71.
    • Spiritual Support: 5 items; Range 8-25; Mean 15.85; α 0.74.
    • Mobilizing Help: 4 items; Range 9-20; Mean 13.94; α 0.53.
    • Passive Appraisal: 4 items; Range 8-20; Mean 15.50; α 0.60.
  • Sample frequencies for levels of cohesion and adaptability (Tables 3 & 4):
    • Cohesion levels: Disengaged (9 individuals; 4 mothers, 5 fathers), Separated (12; 9 mothers, 3 fathers), Connected (21; 5 mothers, 16 fathers), Enmeshed (10; 8 mothers, 2 fathers).
    • Adaptability levels: Rigid (6; 3 mothers, 3 fathers), Structure (18; 10 mothers, 8 fathers), Flexible (14; 7 mothers, 7 fathers), Chaotic (14; 6 mothers, 8 fathers).
  • Normative comparisons (Tables 5–7):
    • Cohesion: Autism sample vs normed sample
    • Disengaged: 17.3% vs 16.3%; Separated: 23.1% vs 33.8%; Connected: 40.4% vs 36.3%; Enmeshed: 19.2% vs 13.6%.
    • χ^2 test: χ^2 = 6.21, df = 3, p > .05 (not significantly different).
    • Adaptability: Autism sample vs normed sample
    • Rigid: 11.5% vs 16.3%; Structured: 34.6% vs 38.3%; Flexible: 26.9% vs 29.4%; Chaotic: 26.9% vs 16.0%.
    • χ^2 = 9.38, df = 3, p < .05 (significant difference; more chaotic styles in autism sample).
    • Family System Level (cohesion + adaptability combinations): Balanced, Mid-Range, Extreme
    • Autism: Balanced 36.5%, Mid-Range 51.9%, Extreme 11.5%; Normed: Balanced 48.7%, Mid-Range 46.2%, Extreme 10.9%; χ^2 not significant (p > .05).
  • Hypotheses testing: multivariate and follow-up analyses (Table 8–9 and narrative):
    • MANOVA: Levels of cohesion and adaptability significantly affected perceived social support from family and from friends.
    • Family social support: F(3, 51) = 5.04, p < .01.
    • Friends’ social support: F(3, 51) = 3.60, p < .05.
    • Adaptability effects on perceived family social support: F(3, 51) = 2.87, p < .05 (not significant for friends).
    • Post-hoc (Tukey) on cohesion levels:
    • Separated and Enmeshed families report higher perceived family social support than Disengaged (p < .01 and p < .05, respectively).
    • Enmeshed families report higher perceived social support from friends than Disengaged or Connected (p < .05 for both).
    • Adaptability effects on social support (Table 9): Rigid and Structured families perceive higher family social support than Flexible or Chaotic (p < .05).
    • Interpretation: partial support for Hypothesis 1; moderate cohesion/adaptability linked to higher social support, but some extreme levels (enmeshment) also show high social support.
  • Coping and social support relationships (Table 8–10):
    • Cohesion level differences in F-COPES total scores: Enmeshed, Connected, and Separated report higher coping use than Disengaged; Enmeshed > Separated/Connected on acquiring social support subscale; Enmeshed/Connected/Separated > Disengaged on reframing; Disengaged > Connected on Passive Appraisal (avoidance) in some cases.
    • Enmeshed families more likely to use acquiring social support than other cohesion types; connected/separated also show more reframing than disengaged; disengaged more likely to rely on passive appraisal.
  • Within-couple (mothers vs fathers) comparisons (paired t-tests):
    • No significant difference in total F-COPES scores within couples; but Acquiring Social Support subscale showed a significant difference: mothers higher than fathers (t(25) = -2.78, p < .05; Mmothers ≈ 29.9 vs Mfathers ≈ 26.0).
    • No significant differences in overall cohesion, adaptability, or satisfaction with functioning between mothers and fathers.
    • Within-couple social support: mothers perceived more social support from friends (t(25) = -5.22, p < .001) and from family (t(25) = -2.18, p < .05).
  • Additional findings (Table 10):
    • Enmeshed families showed higher total F-COPES scores and higher scores on subscales (Acquiring Social Support, Reframing) than disengaged families; also, disengaged families showed higher Passive Appraisal.
    • A trend that higher cohesion relates to greater use of coping strategies, particularly among enmeshed families.
  • Qualitative data (Appendix A):
    • Discovery of autism: families reported early signs; many experienced grief, denial, confusion, anger; some described the experience as akin to a death in the family.
    • Treatments pursued: ABA, gluten- and casein-free diets, chelation; families informed about controversies and interventions.
    • Causes (Table 11): Genetics (19), Vaccinations (16), Environmental insult (7), Antibiotics/immune factors (6), Brain abnormality (3), Birth trauma (3), Allergies (1), Self-blame (1); most families provided multiple causes and many expressed belief that vaccines contributed or caused autism, though most recognized no single confirmed cause.
    • Positive learning experiences: increased patience, compassion, humility; advocacy; being an advocate/researcher; improved relationships; some families reported personal changes (e.g., reduced alcohol/smoking); gained friendships through parent networks; spirituality strengthened for some.

Discussion: Interpretation and Implications

  • Overall interpretation:
    • The study supports the notion that moderate levels of family cohesion and adaptability are associated with more effective coping and greater perceived social support, consistent with Olson’s Circumplex Model and Seligman & Darling’s emphasis on balanced family functioning.
    • Enmeshed families, despite potential normative concerns about over-involvement, demonstrated higher use of coping strategies (F-COPES) and greater perceived social support from both family and friends, suggesting that high cohesion can facilitate resource mobilization and coping in this context.
    • Mothers reported greater social support (from both family and friends) than fathers, consistent with literature positing gender differences in social support networks and coping emphasis; within-couple analyses showed mothers more likely to seek social support, particularly in acquiring external assistance.
  • Implications for theory:
    • Findings nuance the simple dichotomy of “extremes are bad”; in autism contexts, enmeshed cohesion may be advantageous for mobilizing support and coping, potentially buffering family stress, though the long-term effects on child autonomy remain uncertain.
    • The lack of significant differences in overall family satisfaction between mothers and fathers suggests concordance in perceived functioning within couples, which can facilitate joint problem-solving and support.
  • Implications for practice:
    • Interventions could leverage existing social networks and promote accessible support groups for fathers, who reported relatively lower perceived social support.
    • Clinicians should acknowledge and discuss families’ etiological beliefs, as these beliefs influence coping strategies and intervention choices.
    • Consider incorporating family systems therapy approaches that strengthen constructive coping (e.g., reframing), while maintaining healthy autonomy for the child.
  • Limitations (as acknowledged by authors):
    • Small, relatively homogeneous sample (n = 26 families); limited generalizability.
    • Absence of measures for autism symptom severity and family stress, which could influence cohesion/adaptability and coping.
    • Cross-sectional design limits causal inferences and the ability to observe longitudinal changes in family dynamics and child outcomes.
    • Severity variability of autism was not controlled or measured; this could moderate relationships between cohesion/adaptability and coping.
  • Directions for future research:
    • Longitudinal studies to examine how family cohesion/adaptability and coping strategies affect child development over time.
    • Inclusion of autism severity measures and family stress indicators to better parse relationships.
    • Expanded sampling to include more diverse populations (racial/ethnic, socioeconomic, regional) and to examine cultural differences in family functioning and coping.

Limitations and Conclusion

  • Limitations reiteration:
    • Small sample, cross-sectional design, limited demographic diversity, lack of severity and stress measures.
    • Potential confounds due to reliance on self-report data and the possibility of social desirability in responses.
  • Conclusions:
    • The study provides a unique, dual-parent perspective on family functioning in autism, highlighting that mothers and fathers may share perceptions of family functioning while differing in perceived social support and in sub-components of coping (
      particularly Acquiring Social Support).
    • Enmeshed family systems can be associated with higher use of coping mechanisms and greater social support, suggesting a more nuanced view of cohesion in autism families.
    • The results underscore the importance of social support networks and the need for targeted supports for fathers, as well as the value of face-to-face, family-centered assessments to understand dynamics and coping in autism.

Appendices: Measurement Tools (Overview)

  • Appendix A: Interview guide – prompts about discovering autism, etiology beliefs, and learning experiences.
  • Appendix B: FACES-III – 40 items; scales for Cohesion, Adaptability, and Satisfaction with Family Functioning; response scale 1–5; sample items probe leadership, closeness, problem-solving in family tasks.
  • Appendix C: F-COPES – 30 items; five subscales: Acquiring Social Support, Reframing, Seeking Spiritual Support, Mobilizing Family to Obtain/Receive Help, Passive Appraisal; 5-point scale; higher scores indicate more positive coping.
  • Appendix D: Perceived Social Support – Family (PSS-Fa) – 20 items; Yes/No/Don't Know responses; measures perceived support from family; reliability α ≈ 0.90.
  • Appendix E: Perceived Social Support – Friends (PSS-Fr) – 20 items; Yes/No/Don't Know responses; measures perceived support from friends; reliability α ≈ 0.88.
  • Appendix F: Informed Consent – standard consent form with rights, procedures, confidentiality, risks/benefits, and contact information.

References (selected key sources cited in study)

  • American Psychiatric Association. (2000). Diagnostic and Statistical Manual of Mental Disorders, 4th ed., text revision.
  • Minuchin, S. (1974). Families and family therapy. Harvard University Press.
  • Olson, D. H., Portner, J., & Lavee, Y. (1985). FACES III. Family Social Science, University of Minnesota.
  • McCubbin, H., & McCubbin, M. (1987-1988). Family stress theory, ABCX model, and family assessment inventories.
  • Seligman, M., & Darling, R. B. (1997). Ordinary families, special children. Guilford Press.
  • Graded empirical findings on autism-related family stress and coping by: Koegel et al. (1983); Sivberg (2002); Sharpley, Bitsika, Efremidis (1997); Dumas, Wolf, Fisman, & Culligan (1991).