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Social Support For Children With IDD

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Social support can be defined as “the interpersonal transactions or exchanges of resources between at least two people perceived by the provider or recipient to be intended to enhance the well-being of the recipient” (Shumaker & Brownell, 1984). The ability to navigate social interactions and to benefit from positive aspects of social communication, such as deriving social support from positive interactions, varies within the IDD population. Adults with mild to moderate ID report similar overall rates of stress and perceive stress from the same types of events as does the general population, but they are more particularly vulnerable to stressful social interactions than their non-disabled peers, and additionally, they have report ed social stressors to have a greater negative impact than other life events (Bramston & Bostock, 1994; Bramston et al., 1999; Fogarty et al., 1997; Hartley & MacLean, 2005).

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Individuals with certain IDD diagnosesis, such as Downs Syndrome (DS) and Williams Syndrome (WS), are often characterised by having proficient social skills or high levels of sociability, which can include social understanding and empathy, and in turn enables positive responses to others in distress, such as expressing concern and comfort (Di Nuovo and Buono 2011; Kasari et al. 2003; Marchal et al. 2016). Conversely, individuals with IDD, who also have an Autism Spectrum Disorder (ASD) diagnosis, seem to demonstrate more social difficulties than those individuals without the co-morbid ASD diagnosis. For example, Kau et al. (2004) found that individuals with Fragile X syndrome (FXS), diagnosed with co-morbid ASD, demonstrated that their social communication difficulties contributed significantly to measures of irregular behavior as opposed to individuals with FXS without co-morbid ASD. Furthermore, individuals with Downs Syndrome (DS) who meet the screening criteria for co-morbid ASD report milder social difficulties than children with ASD (Warner et al. 2017).

Relevant differences between social competence and social support levels of people with IDD and non-disabled peers first manifest in childhood. Children with IDD experience greater social isolation than their non-disabled peers and find it more problematic to develop and maintain positive peer relationships (Guralnick, 2006). Experiencing isolation from peers during preschool puts children with IDD at higher risk for developing mental health difficulties (Parker & Asher, 1987; Rubin, 1993). Behavior problems are a prominent reason why children with IDD face social isolation (Guralnick 2006, Crnic, 2004). Children with IDD whose disabilities heighten the risk of aggressive behaviors during conflict (such as Autism Spectrum disorder) are more likely to experience social isolation than children with IDD with lower levels of aggression, like Williams Syndrome (Odom et al. 2006). In most cases, emotional regulation difficulties take the form of externalizing problems (Guralnick, 2006) but internalizing problems can cause children with IDD to avoid socializing, another risk factor for social isolation (Odom et al. 2006). Children with IDD who have behavior problems and poor social skills are at greater risk of being bullied (Reiter and Lapidot-Leflet, 2007) and engage in bullying themselves (Christensen et al., 2012).

Social difficulties encountered by this population extend beyond difficulties from the increased behaviour disorders; also implicated are deficiencies in peer-related social competence. Guralnick (2006) estimates 60-65% of children with IDD fail to use appropriate social strategies during social tasks. Social isolation may be found in children besides the 25% of those with IDD who have behavior problems. Conversely, Margalit (1994) identified a group of children with learning disabilities who did not experience more loneliness than their peers. They had age-appropriate social skills despite having continuous academic difficulties, which suggests that intellectual disabilities do not necessarily compromise social skills (Margalit, 1994).

Social-information processing may constitute a form of social competence that is negatively impacted by some, but not all, types of intellectual and developmental disabilities (Guralnick 2006). Social-information processing is a set of competencies including attributional style, accuracy in detecting and interpreting social cues such as eye contact and body language, and evaluation of social response choices and outcomes (Crick and Dodge, 1994). IDD may impact these social competencies, for instance, by reducing cue detection accuracy which may cause children with autism to misread social signals (Dawson et al. 2004).

Conversely, Guralnick et al. (2011) found children with Down Syndrome showed relative strengths in social cognition, such as attention to social cues, compared to children with other forms of IDD. Larkin et al. (2012) found correlations between hostile attributional style, and increased experience of social conflict, in young adults (16-20) with IDD. These adults tended to experience conflict with persons outside their peer groups than non-disabled peers, who experienced more conflict with those within their peer groups. Young adults with IDD tended to make broad negative generalizations about people with whom they experienced conflict and perceived more hostility and threat in those interactions, compared to non-disabled peers. This tendency may exacerbate the other problems with social competencies observed by Guralnick (2006) in childhood.

The social isolation experienced by individuals with IDD often persists into adulthood (Feldman et al. 2002; Lippold & Burns 2009). Havercamp et al. (2002) found that a significant number of adults with IDD reported receiving less emotional support from others than non-disabled peers. Lunsky (2008) suggests research into social isolation in adults with IDD may be hampered by an over-reliance on informant-obtained reports, who may not recognize the impact that different sources of social support may have on adults. Adults with IDD are more likely to receive social support from paid caregivers (Amado 1993) as opposed to family and friends. These relationships are not reciprocal and are less likely to buffer against loneliness than community-based sources of social support. Moreover, concerning different types of social support, paid caregivers are more likely to provide strictly tangible or practical support than support which bolsters self-esteem (Hyman et al., 2003).

Social stressors such as negative social interactions are linked to physical and mental health problems in adults with IDD, including symptoms of depression (Emerson 2010). Nezu, Nezu, Rothenberg, DelliCarpini, and Groag (1995) found an association between depressive symptoms and reported negative social interactions in a study of 107 adults with mild IDD. Hartley and McLean (2005) found that the frequency and relative intensity of stress resulting from negative social interactions predicted symptoms of depression in adults with IDD. Lunsky and colleagues also found a correlation between stress from negative social interactions and depressive symptoms; furthermore, continuing stress predicted the persistence of depressive symptoms six months later (Lunsky & Benson, 2001; Lunsky & Havercamp, 1999). Bender, Rosenkrans and Crane (1999) found non-verbal individuals with IDD face a greater risk of suicide and posited that one reason for this may be social isolation.

Extending the problem beyond depression, there is a high prevalence of loneliness reported by adults with IDD. Stancliffe et al. (2012) have estimated up to 50% of adults with IDD are chronically lonely. Research by Cacioppo and colleagues (Hawkley and Cacioppo 2010; Cacioppo and Cacioppo 2014) suggests loneliness contributes to poorer physical and mental health through myriad pathways, including implicit hypervigilance for social threats induced by social isolation, which increases negative interactions. The problem is pronounced for adults with IDD due to their predisposition to hostile attributions during social conflict (Larkin et al. 2012). Other risk factors for experiencing loneliness throughout the lifespan are family ecological variables like childhood attachment styles (Margalit and Al-Yagon, 2002). Adults with IDD, who lack coping resources or social supports to promote resilience during traumatic life events, are at greater risk for suicidality

The depressive symptoms of adults with mild intellectual disability were associated with an increased frequency of negative social interactions. Lunsky and colleagues found that stress surrounding negative social interactions was positively correlated with concurrently assessed depressive symptoms. Further, interpersonal stress predicted depressive symptoms that were evident 6 months later. Hartley and MacLean (2005) examined the subjective perceptions of stress among 88 adults with mild intellectual disability and found that both the frequency and stress impact of stressful social interactions predicted symptoms of depression.LonelinessIn particular there is a high prevalence of loneliness reported in adults who have IDD, with Stancliffe et al. (2010) estimating up to 50% of adults with IDD are chronically lonely, and these feelings of loneliness contribute to poorer physical and mental health (Hawkley and Cacioppo 2010). High rates of loneliness have been linked to suicidality, particularly in adults with IDD, who lack the coping resources or social supports to exhibit resilience in the face of transient social stressors such as separation from paid support staff and peers with IDD in the context of residential changes (Gilmore and Cuskelly 2014).

Social support promotes resilience in the face of adverse life events (Bonanno 2004) and moderates against the development of PTSD (Joseph 1999; Brewin et al. 2000). A model linking social support to stress-buffering is provided by Cohen and Wills (1985). This is true across the lifespan; for instance, Rose and Espelage (2012) identify the ways that supportive peer relationships protect children with IDD from experiencing victimization during childhood, a topic further explored by Flynt and Morton (2004). However, social support may not always moderate the relationship of trauma and behavioural changes Currently the cause and effect is unclear, however some studies specifically with children with ID have found the strongest predictors for bullying risk to be poor social skills (i.e., social problems and social withdrawal) and behavior problems (Christensen et al. 2012).

Conversely, emotional and interpersonal problems have also been linked to victimization in this population (Reiter and Lapidot-Leflet 2007). Individuals with ID are significantly more likely to receive less emotional support from others than individuals without disabilities.15 15. Havercamp SM, Scandlin D, Roth M. Health disparities among adults with developmental disabilities, adults with other disabilities, and adults not reporting disability in North Carolina. When conducting research on social support in the ID population, it is important to think about how social support is measured. Researchers often turn to caregivers because of communication deficits of those with ID. The problem with this is that informant ratings of social support do not necessarily correspond to the perspective of those with disabilities.

The results suggest that interpersonal relationships can be both positively and negatively associated with physical and mental health for people with ID. The present study contrasted the effects of social support with social strain on depressive symptoms, somatic complaints and quality of life over time in adults with mild ID. The level of social support explained a significant proportion of variance in quality of life 6 months later, but not depressive symptoms or somatic complaints. In contrast, the level of social strain accounted for a significant proportion of variance in depressive symptoms and somatic complaints 6 months later, but not quality of life.

References:

  1. Amado AN. Working on friendships. In: A. Amado, ed. Friendships and community connections between people with and without developmental disabilities. Baltimore: Paul H. Brookes Publishing, 1993;279-298.
  2. Amado, A. N., Stancliffe, R. J., McCarron, M., & McCallion, P. (2013). Social inclusion and community participation of individuals with intellectual/developmental disabilities. Intellectual and developmental disabilities, 51(5), 360-375.
  3. Cacioppo, J. T., & Cacioppo, S. (2014). Social relationships and health: The toxic effects of perceived social isolation. Social and personality psychology compass, 8(2), 58-72.
  4. Carter, E. W., & Hughes, C. (2005). Increasing social interaction among adolescents with intellectual disabilities and their general education peers: Effective interventions. Research and Practice for Persons with Severe Disabilities, 30(4), 179-193.

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