Assessing the Wellbeing of Individuals With Autism Using the interRAI Child and Youth Mental Health (ChYMH) and the interRAI Child and Youth Mental Health – Developmental Disabilities (ChYMH-DD) Tools

Brianne K. Redquest, PhD; Shannon L. Stewart, PhD, C. Psych; Pamela J. Bryden, PhD; Paula C. Fletcher, PhD

Disclosures

Pediatr Nurs. 2020;46(2):83-91. 

In This Article

Discussion

The purpose of this study was to provide a comprehensive picture of the wide range of concerns affecting the health and wellbeing of individuals with autism with and without ID. Data collected using the ChYMH and ChYMH-DD instruments clearly established children and youth with autism are at risk for co-occurring conditions. For example, 50% of participants without ID triggered up to 7 CAPs, while 81% of those with ID triggered up to 10 CAPs. In addition, data revealed children and youth triggering one CAP also triggered additional CAPs, suggesting relationships between these concerns. Children who experience one specific issue appear to be at risk for additional issues. Although all areas triggered are of concern, the discussion will focus on areas that are most prevalent among those with autism and place them at risk for other concerns; these are social challenges and peer relationships, sleep, and injurious behaviors.

Social Challenges

Social challenges, including difficulty with eye contact and social-emotional reciprocity, are fundamental components of autism (American Psychiatric Association, 2013). Although social deficits are core features of this disorder, regardless of intellectual level, not all children and youth were identified as requiring care planning to address social relationships. Specifically, 75% of children and youth without ID triggered the Social and Peer Relationship CAP, and 61% of children and youth with ID triggered the Social Relations CAP. It should be noted that the CAPs for each of these groups are triggered by different social difficulties. The Peer and Social Relations CAP for children and youth without ID focuses more on social isolation, whereas the Social Relations CAP for children and youth with ID focuses more on conflict with peers.

Even though this sample of children and youth were specifically diagnosed with a disorder largely characterized by social challenges, not all children and youth required these care plans. It is possible that the degree of social difficulty experienced by an individual with autism will depend on several factors. For instance, research has revealed that environmental factors (Morrison et al. 2019) and mental health conditions, such as anxiety and depression, may intensify social difficulties among individuals with autism (Eussen et al., 2013).

A study conducted by Morrison and colleagues (2019) found that social environmental factors play a role in the expression of social difficulties. The study showed that individuals with autism experienced fewer social challenges when interacting with another individual diagnosed with autism, compared to when these individuals were interacting with an individual without autism. Therefore, it is likely the degree of social difficulty will depend on contextual factors, including relationships within that individual's environment. It should be noted that this study included adults with autism and not children. It is important for future research to explore if similar contextual factors will impact social difficulties experienced by children and youth with autism.

Furthermore, Eussen and colleagues (2013) found that high anxiety was associated with poor social relations. They also found that anxiety was more common among those with less severe autism. Similarly, Mazurek and Kanne (2010) found that children with autism and a higher IQ reported greater depression and anxiety. Findings from Mazurek and Kanne's (2010) study also showed that children who exhibited greater anxiety and depression reported having one or more friends, but that these friendships were limited in responsiveness and reciprocity. Researchers from both studies (Eussen et al., 2013; Mazurek & Kanne, 2010) suggested that children and youth with autism who are more aware of their social deficits may fear social failure, which can lead to higher anxiety. Given the association between social challenges and mental health conditions, future research should address the examination of comorbid mental health issues and the impact on socio-emotional development. Further understanding into this relationship may encourage interventions aimed to address social challenges that instead focus on mental health conditions as well.

It is clear from this study and other studies that social challenges can increase risk level for any child or youth. Estes and colleagues (2018) found that children who exhibited "low social abilities" also had low academic achievements. In this study, 64% of children without ID triggered both the Social and Peer Relationships and Education CAPs. For the group with ID, 39% of children triggered both the Social Relations and Education Support CAPs. This suggests that children who exhibit greater social challenges may require greater education support.

Social deficits are a core feature of autism; however, certain factors may exacerbate and abate these difficulties. Specific contexts may be more stressful for children with autism than others, especially when there are struggles with communication. This may increase the risk for additional concerns (e.g., self-injury) and other behavioral difficulties; hence, it is important that environments, particularly school environments for children and youth, are inclusive and accommodating.

Sleep

Sleep issues are highly prevalent in children and adolescence with autism, ranging from 40% to 80% (Devani & Hedge, 2015). A clinical review exploring sleep issues in children with autism found sleep onset and maintenance problems, as well as sleep duration, were most commonly reported by parents of children with autism (Richdale & Schreck, 2009). Parents reported that their children wake up during the night for up to three hours at a time. During this time, children would laugh, talk, scream, and/or get up to play. Further, children would fall asleep late (e.g., 6-year-old falling at asleep at 12:00 a.m.) and wake up as early as 2:00 a.m. Comorbid conditions, such as anxiety, attention deficit hyperactivity disorder (ADHD), depression, and mood disorders were risk factors for sleep issues in children with autism (Richdale & Schreck, 2009). Fewer hours of sleep among children with autism also led to greater social deficits, disruptive behaviors, and stereotypic behaviors (Richdale & Schreck, 2009). Although not specifically geared toward those with autism, the ParticipACTION (2016) report, a comprehensive assessment of physical activity engagement among Canadian children and youth, suggested deficits in sleep may be associated with poor academic success, reduced attention span, and weight gain.

This study confirmed sleep issues were highly prevalent among individuals with autism. The Sleep Disturbance CAP was triggered by 64% of those without ID and the Sleep Management CAP was triggered by 72% of those with ID. Sleep issues can lead to greater social deficits (Richdale & Schreck, 2009). Johnson and colleagues (2018) found that children with autism exhibited more day-time behaviors (e.g., social withdrawal, irritability, hyperactivity) when parents reported their children had poor sleep. This study found that more than half of those without ID (53%) triggering the Sleep Disturbance CAP also triggered the Social and Peer Relationship CAP. For those with ID, just less than half of individuals (44%) who triggered the Sleep Management CAP also triggered the Social Relations CAP.

Sleep issues in children with autism may create many difficulties for their caregivers, such as compromised sleep for parents (Herrmann, 2016), strain on the family (Petrou et al., 2018), and significantly high levels of stress (Johnson et al., 2018). Our study found that 40% of individuals with ID who triggered the Sleep Management CAP also triggered the Caregiver Distress CAP. As for the those without ID, 32% of individuals who triggered the Sleep Disturbance CAP also triggered the Caregiver Distress CAP. Given the importance of sleep, it is essential that causes of sleep issues in the autism population are further investigated. This may lead to prevention, interventions, and strategies to minimize sleep issues in individuals with autism and their caregivers to improve their overall wellbeing.

Injurious Behaviors

An alarming number of children and youth with autism and ID triggered the Injurious Behavior CAP (91%) which provides guidelines for eliminating or reducing the frequency and severity of aggressive and self-injurious behaviors in children (Stewart et al., 2016). Self-injurious behaviors are characterized as repetitive behaviors that lead to self-injury without intent to cause physical harm (Soke et al., 2016).

Self-injurious behaviors appear to be associated with other conditions that are common among children with autism, including psychiatric disorders (e.g., anxiety and mood problems) (Soke et al., 2016), sleep problems (Goldman et al. 2011), and sensory processing issues (Duerden et al. 2012). It has also been reported that injurious behaviors are more common among individuals diagnosed with autism who have ID (Carroll et al., 2014).

Similar to other studies (Hartley et al., 2008; Soke et al., 2016), this study suggests that injurious behaviors may be associated with difficulties in communication. Results indicated that 69% of children with autism and ID who triggered the Injurious Behavior CAP also triggered the Communication CAP. Hartely and colleagues (2008) also found that children and youth with autism exhibiting lower cognitive ability and lower expressive language were at a higher risk for aggression and self-injury. Similarly, Soke and colleagues (2016) noted that injurious behaviors may reflect a child or youth's frustration with difficulties in communicating their needs.

It is important that injurious behaviors are properly managed and understood because the impact of these behaviors can be devastating (Stewart, Baiden, & Theall-Honey, 2014). A study conducted by Kalb and colleagues (2012) reported that aggression and self-injurious behaviors were the leading cause of emergency room visits among children with autism. Common injuries resulting from self-injurious behaviors can include concussions, fractures, and eye and dental injuries.

This study further suggests the impact of injurious behaviors may extend beyond children and youth with autism. Almost half of individuals with autism with ID (47%) who triggered the Injurious Behavior CAP also triggered the Caregiver Distress CAP. Previous research has also reported that aggression and injurious behaviors can negatively affect the quality of life of caregivers and is associated with financial impact, exhaustion, and fear for personal safety among other family members (Hodgetts et al., 2013; Rattaz et al., 2015). These behaviors could also contribute to increased risk for out-of-home placement (den Dunnen et al., 2013).

Given the devastating consequences of injurious behaviors on the child with autism, as well as their family members, it is important all efforts aimed to minimize these behaviors are implemented. First, it is crucial to identify children who are at greater risk for exhibiting injurious behaviors to ensure early intervention. Research has identified several conditions that appear to be associated with injurious behaviors (e.g., sleep problems, communication difficulties, and psychiatric disorders). It is important that these conditions are treated to address such behaviors. Given that the impact of these behaviors can negatively impact their family members, it is crucial that caregivers are supported as well. This may include providing caregivers with information to understand these behaviors, implementing appropriate evidence-based care, offering respite care, and ensuring they have access to needed support groups.

Limitations

Among those with ID, several CAPs did not meet a cell count greater than five, and therefore, could not be reported. A larger sample size among this group may ameliorate this limitation. Further, the sample contained a large age range (age 4 to 18 years); thus, issues experienced by children may be different than issues experienced by adolescents. A larger sample size would afford the opportunity to divide the sample into children (12 years and younger) and youth (12 years to 18 years), thus identifying specific concerns for these age groups.

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