Raising a child with an autism spectrum disorder (ASD) can be an overwhelming experience for parents and families. The pervasive and severe deficits often present in children with ASD are associated with a plethora of difficulties in caregivers, including decreased parenting efficacy, increased parenting stress, and an increase in mental and physical health problems compared with parents of both typically developing children and children with other developmental disorders. In addition to significant financial strain and time pressures, high rates of divorce and lower overall family well-being highlight the burden that having a child with an ASD can place on families. These parent and family effects reciprocally and negatively impact the diagnosed child and can even serve to diminish the positive effects of intervention. However, most interventions for ASD are evaluated only in terms of child outcomes, ignoring parent and family factors that may have an influence on both the immediate and long-term effects of therapy. It cannot be assumed that even significant improvements in the diagnosed child will ameliorate the parent and family distress already present, especially as the time and expense of intervention can add further family disruption. Thus, a new model of intervention evaluation is proposed, which incorporates these factors and better captures the transactional nature of these relationships.

Parent and Family Impact of Autism Spectrum Disorders: A Review and Proposed Model for Intervention Evaluation

Background Behavioural and emotional problems occur at a high rate in children and adolescents with intellectual disability, often from a young age. Some studies have indicated that children and adolescents with autism present with even higher rates. Less is known about the presentation, development and family impact of these difficulties in young children with autism. This study aimed to explore these issues in toddlers with pervasive developmental disorders (PDDs), those with delay without a PDD, and their families.

Methods  Participants were 123 children aged 20–51 months, referred to a developmental assessment clinic. Parents completed a checklist on child behavioural and emotional problems, and individual questionnaires on family functioning, their own mental health, and stress in relation to parenting their child. The child’s language and cognitive skills, adaptive functioning and behaviour were assessed by standardized measures. Measures were repeated 1 year postdiagnosis. Behavioural and emotional problems in young children with a PDD were compared with those in children with developmental delay without a PDD, and their impact on parental outcomes explored over time.

Results  Initial and follow-up measures of child behaviour and emotional problems, parent mental health problems, parent stress and family functioning were significantly correlated, providing some evidence of stability over time. Child emotional and behavioural problems contributed significantly more to mother stress, parent mental health problems, and perceived family dysfunction than child diagnosis (PDD/non-PDD), delay or gender. Compared with mothers, all fathers reported significantly less stress in relation to parenting their child.

Conclusion  Results highlighted the importance of addressing emotional and behavioural problems in very young children with autism and/or developmental delay. The need for early support and intervention for mothers, fathers and families in this context was also evidenced. As research has shown that behavioural and emotional problems persist into adolescence and young adulthood, understanding of these issues in very young children and their parents has important implications for intervention and long-term outcomes.

Behaviour and emotional problems in toddlers with pervasive developmental disorders and developmental delay: associations with parental mental health and family functioning.

The article discusses a study conducted to investigate the impact of children with high-functioning autism (HFA) on parental stress, sibling adjustment, and family functioning; the study involves a sample of parents of 15 children with HFA and parents of 15 matched control children who completed questionnaires measuring the dependent variables. The results indicate parents of children with HFA experience significantly more parenting stress than parents of children with no psychological disorder, which was found to be directly related to characteristics of the children. The study further shows that the higher intellectual functioning in children with HFA does not compensate for the stress associated with parenting children with autism spectrum disorders. Because the intervention efforts directed at children with HFA will not eliminate the child's primary symptoms, treatment programs may need to address parental stress, which in turn will help optimize treatment outcome for the child and the family.

The Impact of Children with High-Functioning Autism on Parental Stress, Sibling Adjustment, and Family Functioning

Stress proliferation (the tendency of stressors to engender additional stressors in other life domains) is explored in a sample of 68 parents of children identified with ASD. Regression analyses showed that parent depression was predicted by both child symptom severity and by stress proliferation and that stress proliferation partially mediated the effect of child symptom severity on parent depression. In addition, informal social support was found to reduce levels of parent stress proliferation and parent depression; however, contrary to the stress buffering hypothesis, the ameliorative effect of support on stress proliferation was shown to be greatest when reported child symptomatology was less (rather than more) severe. Study implications for future research and practice are discussed.

The impact of child symptom severity on depressed mood among parents of children with ASD: the mediating role of stress proliferation.

Purpose: The purpose of this research was to determine (a) the level of family adaptation, as measured by the Family Crisis Oriented Personal Evaluation Scales (F-COPESs) instrument, among persons with a child diagnosed with autism spectrum disorder (ASD) aged 12 years and under, (b) if there was a difference in F-COPES scores based on family demographics, and (c) the time lag between parent’s suspicion of ASD and the actual professional diagnosis of ASD.

Data sources: A descriptive survey was used with a convenience sample derived from ASD treatment agencies and a parental support group in the California Bay Area that supports the children and parents of children with special needs.

Conclusions: Overall, the level of adaptation was within the normal limits with coping scores similar to the norm scores of the F-COPES with males scoring slightly higher than females in the coping scale. Subscale scores of the F-COPES indicated that the parents sought encouragement and support from friends, informal support from other families who faced similar problems, and formal support from agencies and programs. Reframing revealed similar results as the norm with less use of spiritual support, and more passive appraisals were noted from the parents of children with ASD. Within internal comparisons, there were no statistical differences among gender and amount of time a member spent in coordination of services. Comparisons in ethnicity for Caucasians and Asian Americans revealed a higher coping score for reframing in Asian Americans and a higher passive appraisal score among Caucasians. Non-English speakers scored higher on spiritual support, while English speakers scored higher in passive appraisals. Because of insufficient statistical power, comparisons in education, income, marital status, and relocation of residence were deferred. The time from parents’ suspicions of developmental delays or disability to a professional diagnosis of ASD was at least 6 months or greater.

Implications for practice: It is imperative for nurse practitioners (NPs) to provide appropriate professional support and other social support systems to families with children with ASD. Educating parents to sound therapy approaches to provide them with the skills needed to directly address stressful events in order to increase the parent’s confidence level as to avoid passive appraisals is also a crucial role of the NP. NPs may want to use the F-COPES as part of the assessment to ascertain the areas of needs of families. This study reveals the resiliency and highly adaptive nature of these parents who are under severe strain and stress of caring for a child with ASD. The effective ways they coped as a family were in the areas of informal and formal social support networks. Participants also used passive appraisal to cope. The study also supports the need for early recognition and diagnoses of ASD and referral for early intervention for better outcomes for the children and families affected by ASD.

Coping strategies used by parents of children with autism

Family systems theory was employed to study sibling relationships in 50 families with a child with autism. Typically developing siblings expressed satisfaction with their sibling relationships. Parents were somewhat less positive about the sibling relationship than were the siblings themselves. As hypothesized, stress in the marital relationship was associated with compromised sibling relationships. Informal social support buffered the deleterious effects of marital stress on positive, but not negative, aspects of the sibling relationship. Contrary to predictions, families experiencing high marital stress who sought greater support from formal resources external to the family had typically developing siblings who reported a higher level of negative sibling behaviors than families who sought low levels of formal support. Findings reinforce the importance of considering family context as a contributor to the quality of the sibling relationship.

Sibling relationships when a child has autism: marital stress and support coping.

This study examined associations between sibling temperaments, differential parenting, and the quality of the relationships between 50 children with autism spectrum disorder (ASD) and their typically developing siblings. The temperament dimension of persistence, but not activity level or emotional intensity, was found to relate to the quality of the sibling relationship. Effects were stronger for temperaments of the typically developing siblings, but persistence levels of both groups of children interacted to predict sibling relationship quality. Persistence also was the temperament dimension associated with differential parenting, with increased levels of differential parenting occurring when siblings, and to some degree the children with ASD, were low in persistence. When siblings were dissatisfied with differential parenting, quality of the sibling relationship was compromised.

Jessica Wood Rivers

Papers

Sibling relationships when a child has autism: marital stress and support coping.

Child Temperaments, Differential Parenting, and the Sibling Relationships of Children with Autism Spectrum Disorder