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Autism: Family Life - Tactics for Getting Normal Again
Autism continuing education psychology CEUs

Section 11
Stress & Lack of Social Support in Mothers of Children with Autism

CEU Question 11 | CEU Test | Table of Contents | Autism
Counselor CEUs, Social Worker CEUs, Psychologist CEs, MFT CEUs

Effects of Social Support
Research addressing the effects of social support on family stress can be grouped into two categories: (a) research assessing the effects of informal support and (b) research assessing the effects of formal support. Bristol and Schopler (1983) defined formal support as assistance that is social, psychological, physical, or financial and is provided either for free or in exchange for a fee through an organized group or agency. They defined informal support as a network that may include the immediate and extended family, friends, neighbors, and other parents of children with disabilities. Two studies have examined the effects of informal support on maternal stress.

Informal Support.Bristol (1984) studied the psychosocial environment of families of children with autism to determine which family characteristics helped them to adapt to and cope with the child. Forty-five mothers were recruited from consecutive referrals to Division TEACCH, a statewide program for individuals with autism in North Carolina. In the study, 27 of the 45 children had formal diagnoses of autism, and 18 had significant communication and/or behavioral problems. The study found that mothers in the low-stress group reported greater perceived support. The study also found that for all mothers, the most important sources of support that led to lower stress levels were spouses, the mothers' relatives, and other parents of children with disabilities. Mothers who perceived greater support also reported significantly fewer depressive symptoms and happier marriages.

Similar reactions to informal supports were found by Herman and Thompson (1995) when they looked at factors related to families' perceptions of "internal resources" in rearing a child with a developmental disability. Similar to Bristol's (1984) use of "informal supports," "internal resources" was defined as resources that were within the family unit and did not need to be provided by external agents (e.g., special needs-related agencies). Participants were 415 families enrolled in the Cash Subsidy Program in Michigan for children with developmental disabilities (mental retardation, cerebral palsy, autism, and epilepsy). Both mothers and fathers felt that their partner--an internal resource--was the most helpful in providing social support, and more than half of the respondents reported that social support from more formal sources, such as parent groups, social clubs, and day care centers, was unavailable.

Formal Support. Peck (1998) evaluated the effects of a multicomponent intervention for families of young children with autism that was designed to reduce the families' stress. The intervention program applied a family systems model that targeted three goals: to increase families' (a) factual knowledge about autism, (b) knowledge of stress and mechanisms for coping with stress, and (c) awareness of social support and advocacy issues. Nineteen parents of children with autism ranging in age from 2 to 6 years were enrolled in the intervention program. However, only the nine parents who completed the program and provided the most data were included in the treatment group. The results of the study revealed that parents showed only a modest non-significant increase in factual knowledge, and the intervention was even less successful at increasing knowledge about stress management. Still the majority of parents reported positive experiences of attending the parent support group, which entailed meeting other parents of children with autism, discussing common concerns, and increasing the size of their support network. Bristol (1984) reported similar findings in regard to parent support groups in her study of the support needs of parents.

Krauss, Upshur, Shonkoff, and Hauser-Cram (1993) examined the effects of professionally organized parent support groups for 150 mothers of infants and toddlers with disabilities (Down syndrome, motor impairment, and developmental delay of unknown origin). The results of the study revealed both positive and negative effects of parent support groups. On the positive side, the intensity of participation by mothers in the parent support group was associated with significant gains in perceived support from other mothers in the group. Thus, the more the mothers attended, the more apt they were to perceive the support of other parents in the group as beneficial. On the negative side, greater intensity in attendance was also associated with mothers' elevated reports of the personal strain that the child placed on the family. Krauss and colleagues suspected that these results were due to group meetings' functioning as a place parents could go to discuss common concerns, one of which was the significant impact the child had on the family.

Bailey et al. (1999) examined the support needs of 200 Latino parents of children with developmental disabilities, living in diverse parts of the United States, to determine their needs and the social supports currently available to meet those needs. The results revealed that parents needed information, specifically, about the child's condition, how to obtain services for the child, and how to cope with the child's behavior. Mothers and fathers reported that they received the highest levels of support from family and formal support sources. Both were rated as being significantly more supportive than friends or other sources of informal support (e.g., churches, neighbors).

Overall, informal support appears to be a more effective stress buffer than formal support. One of the findings that pervaded the literature on both informal and formal supports was the benefit mothers derived from joining parent support groups. At group meetings they were able to freely share their concerns about their child. This finding leads to the necessary examination of how the use of social support then affects parenting.

On the basis of the reviewed literature, it appears that both parent and child characteristics play a role in parents' decision to seek social support. Two of the most significant child characteristics that lead mothers to pursue social support are cognitive limitations and behavior problems (Bristol, 1979; Salisbury, 1990). Children with autism who have more severe cognitive limitations place a greater degree of stress on their mothers because of their potential for long-term dependency. Robbins et al. (1991) found that even with intervention, mothers of children with significant cognitive limitations were more stressed than mothers whose children had less severe cognitive impairments. Behavior issues may present even more of a challenge than cognitive ones because of the potential public scrutiny parents face from society, and perhaps from family and friends as well (Sharpley et al., 1997). This may place external pressure on families to seek social support to help them address the child's behavior problems. Unfortunately, these child characteristics may also further limit the mothers' social support choices and force them to withdraw from potentially stress-reducing activities because of the time demands the child places on the family. Such dramatic situations often lead to higher levels of stress and depression in mothers.

Stress and depression are two of the main factors that lead mothers of children with autism to obtain social support. As a result of such stress, mothers first seek support from their family (in particular, their spouses). In general, informal support sources are more effective at reducing stress in mothers than formal support. The most useful source of formal support for mothers seems to be parent support groups, where they feel free to discuss their concerns about rearing a child with autism without fear of being scrutinized (Krauss et al., 1993). Mothers who receive social support relate better emotionally to their children and have more positive interactions with them (Dunst et al., 1986). When such support is not available, the result is often higher levels of stress and depression.

Still, the majority of studies reviewed in this article used parental self-reports to measure stress and parents' perception, and/or actual use, of social support. More objective research is needed to determine how specific child and parent characteristics interact to influence parents' decision to seek social support. For example, Bristol (1984) found that parents in the low-stressed group of her study had children who were perceived by their mothers to have less difficult personality characteristics and to be less socially obtrusive. In Bristol's study, the child's temperament and the mother's stress level interacted to influence the mother's decision to seek social support. Those mothers who believed their child was not temperamentally difficult also perceived greater support from informal sources. To provide more effective intervention services for parents of children with autism, professionals in the field must better understand how parent and child variables interact to affect parents' ability to seek out and obtain needed social support.

Researchers must further examine what types of social support would be most beneficial to parents. There is a paucity of research studies addressing the use of social support by parents of children with autism, which is reflected in the fact that no research was found for review after the year 1999. Research should also be conducted on the needs of fathers, so interventionists can better address their concerns as well. It is important to examine the needs of both parents because they are part of a family system, and often the actions of one parent affect those of the other. Dyson (1997) found that when fathers reported having more social support, a positive family relationship, and greater family emphasis on the personal growth of individual family members, mothers reported lower levels of stress.

Research is also needed to address the benefits of formal support for parents of children with autism. Current studies on formal support have produced mixed results (Krauss et al., 1993). Professionals in the field must understand how both informal and formal supports can be used to alleviate the consistent stress associated with parenting a child with autism. Finally, future studies should examine how the use of social support by parents translates into positive parenting behavior, increased knowledge of the child's condition, and improved family functioning. Through this knowledge the field will be better able to meet the needs of the family and help them cope with, accept, and adapt to parenting a child with autism.

Implications for Practice
Parent-and Child-Related Interventions
. Stress and depression are two of the critical variables that lead mothers of children with autism to seek social support (Sharpley et al., 1997; Wolf et al., 1989). Effective interventions should both remediate the characteristics of autism in the child and alleviate the stress level of the parent by providing them access to sources of social support and parent training programs. Training is needed to help parents cope with the child's challenging characteristics. Behavior management issues and cognitive limitations are among the greatest stress-inducing child variables for the parent (Bristol, 1979; Salisbury, 1990); therefore, interventions geared toward the child should also help the parent address behavior management concerns in the home and community, and ways to cope with children who possess uneven patterns of cognitive development.

Continuum of Supports. Herman and Thompson (1995) found that husbands provide some of the most beneficial support to mothers. However, because society has become so much more diverse and the definition of family so much broader, service providers should help mothers identify alternative types of informal support when there is no spouse present. So far service providers have a limited knowledge base of how to best support these parents. Parent support groups are an effective means of formal support for mothers of children with developmental disabilities, but even they have their flaws (Krauss et al., 1993; Peck, 1998). Service providers must be able to provide a continuum of support services to families, much like educators currently provide a continuum of alternative placements for their children. By providing parents with choices, it is more likely that they will find a support system that best meets their unique and diverse needs.

There are a number of reasons why professionals in the field must find more effective methods of supporting families of children with autism. For one, helping parents obtain needed social support may help to curtail the unnecessary institutionalization of countless children. Raif and Rimmerman (1993) demonstrated that high-stressed parents are more inclined to place their children out of home. Also, mothers of children with autism are one of the most stressed parental groups, and consistent and pervasive stress makes it even more difficult to parent. Future research must continue to investigate why this particular group of parents is so stressed and what types of social support best alleviate that stress. Professionals have a responsibility to help these mothers better cope with an already difficult, and potentially lifelong, situation.
- Boyd, Brian, Examining the relationship between stress and lack of social support in mothers of children with autism, Focus on Autism & Other Developmental Disabilities, Winter 2002, Vol. 17, Issue 4.
The article above contains foundational information. Articles below contain optional updates.

Personal Reflection Exercise #4
The preceding section contained information about stress and lack of social support in mothers of children with autism. Write three case study examples regarding how you might use the content of this section in your practice.

Online Continuing Education QUESTION 11
According to Bristol's study, what are the most important sources of support for mothers that led to lower stress levels? Record the letter of the correct answer the CEU Test.

 
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Impact of a digital Modified Checklist for Autism in Toddlers–Revised on likelihood and age of autism diagnosis and referral for developmental evaluation
Autism, Ahead of Print.
The present study is a single-site quality improvement project within pediatric primary care involving the implementation of a digital version of the Modified Checklist for Autism in Toddlers–Revised. We evaluated the impact of the digital screener on the likelihood of physician referral for a developmental evaluation or autism diagnosis, and the age of the patients at the time of the event. Patients were children 16–30  months old seen for 18 and 24 months’ well-child visits (1279 encounters), who screened positive for risk for autism spectrum disorder on the Modified Checklist for Autism in Toddlers–Revised without a previously documented autism spectrum disorder diagnosis. Comparisons were made between a cohort of children screened with the paper and pencil version of the Modified Checklist for Autism in Toddlers–Revised before the digital version was implemented and a cohort of children screened during the intervention period. Patients were followed until 48 months and referrals were obtained from electronic health records. Patients screened with the digital Modified Checklist for Autism in Toddlers–Revised were five times more likely to be referred for a developmental evaluation. The automatic scoring, risk assessment, and referral decision support features helped to improve screening outcomes. In this clinic, process change to a digital screening method with automatic guidance for next steps improved adherence to evidence-based clinical care.Lay abstractThis was a project in primary care for young children (1–2 years old). We tested a parent questionnaire on a tablet. This tablet questionnaire asked questions to see whether the child may have autism. We compared the paper and pencil version of the questionnaire to the tablet questionnaire. We read the medical charts for the children until they were 4 years old to see whether they ended up having autism. We found that doctors were more likely to recommend an autism evaluation when a parent used the tablet questionnaire. We think that the tablet’s automatic scoring feature helped the doctors. We also think that the doctors benefited from the advice the tablet gave them.
Implementing early intensive behavioral intervention in community settings
Autism, Ahead of Print.
Although research shows early intensive behavioral intervention is efficacious when delivered in university or private intervention centers, little is known about effectiveness or feasibility of disseminating early intensive behavioral intervention to larger communities. The Michigan State University Early Learning Institute was developed to address gaps in distribution of early intensive behavioral intervention to community settings, with an emphasis of serving children and families on Medicaid. This short report describes the Early Learning Institute’s approach and preliminary utilization data among Medicaid families. Results suggest the model has potential for dissemination within community settings and promote utilization among Medicaid children.Lay abstractAlthough research shows early intensive behavioral intervention can be very beneficial for children with autism spectrum disorder when delivered in university or private intervention centers, little is known about the best way to provide early intensive behavioral intervention within the broader community. The Michigan State University Early Learning Institute was developed to address challenges with providing early intensive behavioral intervention in community settings, with an emphasis on serving children and families on Medicaid. This short report describes the approach taken by the Early Learning Institute and reports data regarding enrollment and utilization among Medicaid families. Results suggest the model has potential to be used within community settings and that children on Medicaid are likely to consistently attend their treatment sessions.
Work, living, and the pursuit of happiness: Vocational and psychosocial outcomes for young adults with autism
Autism, Ahead of Print.
Longitudinal data on the functioning of adults referred for possible autism as children are sparse and possibly different from datasets consisting of adult clinical referrals. A total of 123 young adults, mean age of 26, referred for neurodevelopmental disorders in early childhood were categorized into three outcome groups: autism spectrum disorder (ASD) diagnosis at some point and current intelligence quotient (IQ) ⩾ 70 (Ever ASD-Higher IQ), ever ASD and current IQ < 70 (Ever ASD-Lower IQ), and individuals who never received an ASD diagnosis (Never ASD). Independence and well-being were assessed through direct testing, questionnaires, and interviews. Verbal IQ, beyond intellectual disability status, accounted for group differences in employment; autistic features (Autism Diagnostic Observation Schedule Calibrated Severity Score) were uniquely related to adaptive skills and friendships. In many ways, the Never ASD group had similar outcomes compared to the ASD groups. However, lower well-being and fewer positive emotions were related to ASD diagnosis across IQ. The Ever ASD-Lower IQ group had the highest levels of irritability, hyperactivity, and medications. Families played a major role in supporting adults with and without ASD at all intellectual levels. Realistic ways of increasing independence should be developed through working with adults and their families, while acknowledging the contribution of individual differences in mental health, intelligence, and autism symptoms across neurodevelopmental disorders.Lay abstractIt is important to better understand how adults with autism are functioning in adulthood. Studies that have tracked individuals across the lifespan can help identify developmental factors influence differences in adult outcomes. The present study examines the independence, well-being, and functioning of 123 adults that have been closely followed since early childhood. Autism diagnosis and cognitive assessments were given frequently throughout childhood and during adulthood. We examined differences between adults who had received an autism diagnosis at some point with higher cognitive abilities (Ever ASD-High IQ) and lower cognitive abilities (Ever ASD-Low IQ), as well as adults who never received a diagnosis of autism in the course of the study (Never ASD). We found that autistic features specifically related to adaptive skills and friendships, and verbal intelligence related to work outcomes. In many ways, the Never ASD group had similar outcomes compared to the ASD groups. However, adults with ASD tended to have lower well-being and fewer positive emotions. Families played a major role in supporting adults with and without ASD at all intellectual levels. The findings suggest that realistic ways of increasing independence need to be developed by working with adults and their families, while acknowledging the contribution of individual differences in mental health, intelligence and autism symptoms across neurodevelopmental disorders.
Does implementing a new intervention disrupt use of existing evidence-based autism interventions?
Autism, Ahead of Print.
This study examines how the introduction of TeachTown:Basics, a computer-assisted intervention for students with autism spectrum disorder, influenced teachers’ use of other evidence-based practices. In a randomized controlled trial that enrolled 73 teachers nested within 58 schools, we used three-level hierarchical linear models to evaluate changes in teachers’ use of evidence-based practices across the school year for those who received TeachTown:Basics versus those assigned to control. Both groups received training and implementation support to deliver three well-established evidence-based practices for autism spectrum disorder. Qualitative interviews were conducted with 25 teachers who used TeachTown:Basics to better understand their experience. Compared with teachers in the control group, teachers in the TeachTown:Basics group reported significantly less growth over the 9-month period in their use of evidence-based practices that require one-to-one instruction (ps < 0.05), but no difference in their reported use of evidence-based practices that do not involve one-to-one instruction (p = 0.637). Qualitative interviews indicated that teachers viewed TeachTown:Basics as an effective substitute for one-to-one instruction because it was less burdensome, despite the lack of support for TeachTown:Basics’ effectiveness. Before introducing new practices, education leaders should carefully consider both evidence of effectiveness and the potential impact on the use of other evidence-based practices.Lay abstractInterventions for children with autism spectrum disorder are complex and often are not implemented successfully within schools. When new practices are introduced in schools, they often are layered on top of existing practices, with little attention paid to how introducing new practices affects the use of existing practices. This study evaluated how introducing a computer-assisted intervention, called TeachTown:Basics, affected the use of other evidence-based practices in autism support classrooms. We compared how often teachers reported using a set of evidence-based practices in classrooms that either had access to TeachTown:Basics or did not have the program. We found that teachers who had access to the computer-assisted intervention reported using the other evidence-based practices less often as the school year progressed. Teachers also reported that they liked the computer-assisted intervention, found it easy to use, and that it helped overcome challenges to implementing other evidence-based practices. This is important because the computer-assisted intervention did not improve child outcomes in a previous study and indicates that teachers may use interventions that are appealing and easier to implement, even when they do not have evidence to support their effectiveness. These findings support the idea of interventions’ complexity and how well the intervention fits within the classroom affect how teachers use it and highlight the need to develop school-based interventions that both appeal to the practitioner and improve child outcomes.
Autistic peer-to-peer information transfer is highly effective
Autism, Ahead of Print.
Effective information transfer requires social communication skills. As autism is clinically defined by social communication deficits, it may be expected that information transfer between autistic people would be particularly deficient. However, the Double Empathy theory would suggest that communication difficulties arise from a mismatch in neurotype; and thus information transfer between autistic people may be more successful than information transfer between an autistic and a non-autistic person. We investigate this by examining information transfer between autistic adults, non-autistic adults and mixed autistic-with-non-autistic pairs. Initial participants were told a story which they recounted to a second participant, who recounted the story to a third participant and so on, along a ‘diffusion chain’ of eight participants (n = 72). We found a significantly steeper decline in detail retention in the mixed chains, while autistic chains did not significantly differ from non-autistic chains. Participant rapport ratings revealed significantly lower scores for mixed chains. These results challenge the diagnostic criterion that autistic people lack the skills to interact successfully. Rather, autistic people effectively share information with each other. Information transfer selectively degrades more quickly in mixed pairs, in parallel with a reduction in rapport.Lay abstractSharing information with other people relies on the ability to communicate well. Autism is defined clinically by deficits in social communication. It may therefore be expected that autistic people find it difficult to share information with other people. We wanted to find out whether this was the case, and whether it was different when autistic people were sharing information with other autistic people or with non-autistic people. We recruited nine groups, each with eight people. In three of the groups, everyone was autistic; in three of the groups, everyone was non-autistic; and three of the groups were mixed groups where half the group was autistic and half the group was non-autistic. We told one person in each group a story and asked them to share it with another person, and for that person to share it again and so on, until everyone in the group had heard the story. We then looked at how many details of the story had been shared at each stage. We found that autistic people share information with other autistic people as well as non-autistic people do with other non-autistic people. However, when there are mixed groups of autistic and non-autistic people, much less information is shared. Participants were also asked how they felt they had got on with the other person in the interaction. The people in the mixed groups also experienced lower rapport with the person they were sharing the story with. This finding is important as it shows that autistic people have the skills to share information well with one another and experience good rapport, and that there are selective problems when autistic and non-autistic people are interacting.

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