Caregiver perspectives of family functioning in families with an adult with autism spectrum disorder

Abstract

Introduction: Definitions of healthy family functioning for families with an individual with ASD need to be clarified, including the possibility that rigidity and enmeshment are positive dimensions of family functioning in this population. Methods: Dimensions of family functioning, including levels of Cohesion, Enmeshment, Rigid and Chaotic subscales, were examined in 322 caregivers of dependent adults with ASD recruited from the SPARK database, using the Family Adaptability and Cohesion Evaluation Scales (FACES-IV). Comparisons were made to measures of quality of life, uncertainty of illness, perceived stress, family communication, family satisfaction, and ASD core symptomatology. Psychometric properties of the FACES-IV were examined, and a revised scale, the FACES-IV-19, was developed. Latent class analysis was completed using the FACES-IV-19, with discriminant function analysis used to confirm class membership. Results: FACES-IV-19 subscales had acceptable levels of internal consistency (Cohesion (α = .783), Enmeshed (α = .734), Chaotic (α = .721) and Rigid (α = .736)). Caregivers reported high levels of Cohesion, moderate levels of Rigid, and low levels of Enmeshment and Chaos. Cohesion and Rigid were significantly positively correlated with each other (r = .224, p ≤ .001), and with measures of quality of life (r range .157 to .703), family communication (r range .201 to .674) and family satisfaction (r range .183 to .669), and negatively correlated with uncertainty of illness (r range - .107 to - .311) and perceived stress (r range .110 to .368). Latent class analysis resulted in two classes of caregivers, one with unhealthy (Class 1) and one with healthy (Class 2) characteristics of family functioning. Class membership was correctly predicted in 78.3% of the cases. Conclusions: This study found relatively healthy family functioning in a sample of caregivers of adults with ASD, and higher rigidity levels were identified as a positive dimension of family functioning. The FACES-IV-19 allows for the quick identification of caregivers and families that may have unmet needs and are at risk for a lower quality of life and increased levels of stress, and who might benefit from additional services, including family therapy. When included in intervention studies the FACES-IV-19 has the potential to identify clinically meaningful changes in family functioning alongside other treatments.