Advertisement

Self-Help for Parents of Children with Autism: Mindfulness and Compassion

  • Samuel Fernandez-Carriba
  • Jessica Bradshaw
Chapter
Part of the Autism and Child Psychopathology Series book series (ACPS)

Abstract

Whereas the role of the parent as natural therapist for their child with autism has been studied at length, much less attention has been given to understand and support the emotional needs of those we bestow with such a great responsibility. In this chapter, we refer to interventions that provide support for the mental health and overall well-being of these parents as self-help programs. First, we highlight the scarcity of studies addressing self-help in the parent-training literature. Next, we discuss practical and ethical reasons why more attention should be given to this topic. We then provide a detailed account of self-help programs that have been empirically studied, with attention to specific techniques that have shown promising results, such as mindfulness meditation or training in full awareness. Mindfulness and compassion meditation, defined by the cultivation of full awareness of others and self with the desire to alleviate all suffering, will be presented as a potentially successful coping strategy to reduce distress in parents of children with autism as well as a social skill training to reduce isolation and increase social competence. We will conclude with the brief report of a pilot program at the Marcus Autism Center in which we aimed to teach parents mindfulness and compassion meditation which, in turn, may benefit their children with autism.

Keywords

Compassion Mindfulness Self-help Mental health Parents Autism 

Why Is Self-Help Missing from Parent Training?

The explosion of empirical studies in the world of autism in the last three decades involving parents or primary caregivers as active agents in their children’s intervention seems more than justified, given the parents intimate knowledge of their child’s abilities, their context, and the intervention goals (Vismara & Rogers, 2010). In addition, parent-delivered treatments have the benefits of increased intensity and integration of treatment in everyday contexts, as well as a lower cost. By bringing the intervention to the home environment, parents take advantage of everyday naturally occurring opportunities, which are much more frequent than those created in a specialized center. Learning is also more likely to be generalized and maintained in this natural context, which is still currently one of the greatest challenges of therapies addressing autism symptoms (Barton & Harn, 2012). Finally, the family will not have to rely as heavily on costly professionals.

In their review of parent-training programs, Bearss, Burrell, Stewart, and Scahill (2015) propose a helpful taxonomy of parent-training interventions. They argue that precise categorization of the different interventions is more than an academic issue; it also affects clinic administrators, funding agencies, insurance companies, and policy-makers. In essence, they differentiate between parent-mediated (or parent-implemented) interventions and parent-support interventions. Parent-mediated interventions are technique-focused programs where the parent is the agent of change and the child is the direct beneficiary of treatment. In contrast, parent-support interventions are primarily knowledge focused, aiming to support the parents’ need for information, although the child may benefit indirectly. Within the category of parent-support interventions, Bearss et al. include two types of interventions: care coordination services and psychoeducational programs.

Care Coordination Services

The Agency for Healthcare Research and Quality (AHRQ) defines care coordination as “the deliberate organization of patient care activities between two or more participants involved in a patient’s care to facilitate the appropriate delivery of health care services” (AHRQ, 2014). Although the benefits of care coordination programs for the families and the children are widely accepted, empirical evidence supporting their effectiveness is rare, the challenge being the wide diversity of services and populations served, as the authors note (Bearss et al., 2015). There is therefore a need for rigorous evaluation of this kind of program as a helpful support system for families with children with autism.

One model of a care coordination program has been published by Parellada et al. (2013). The program, Comprehensive Medical Care for Autism Spectrum Disorders (AMI-TEA), developed in Spain, provides families with a care coordinator who facilitates care by organizing medical appointments, accompanying the family to appointments, and communicating with relevant practitioners regarding the individual’s needs. There is no explicit mention of emotional support to parents in this program, although escort/accompaniment is one of the key elements, and the case manager also gathers information on the family’s previous experience with medical services, including their level of stress and satisfaction. The AMI-TEA program is not too different from the care coordination program at the Marcus Autism Center in Atlanta, Georgia, under the direction of Cheryl Rhodes (Rhodes, Stiles, & Hall, 2017), which offers the following services:
  • A point person to assist families in navigating services in the Marcus Autism Center and in their local community

  • Linkage to local service providers for therapies and services

  • Connection to family supports like parent groups, respite services, emergency services, funding, and advocacy groups

  • Emotional support

  • Information and connection with transportation and local hotel and hospitality options in coordination with scheduled appointments at the center

Psychoeducational Programs

There is more research available on psychoeducational programs for parents of children with autism than on care coordination. There is no question about the benefits for the children of providing parents with quality up-to-date information on ASD that helps them both have realistic expectations and empowers them to make decisions leading to the best possible outcomes (Brookman-Frazee, Stahmer, Baker-Ericzén, & Tsai, 2006). As several advertised treatments for autism are not grounded in evidence-based practice and do not have adequate empirical support for their safety and efficacy, parents themselves carry the burden of ensuring that time and resources are allocated to treatments with the most guarantees.

Psychoeducation is generally provided informally in clinical practice or through self-guided resources offered also in clinics or by care coordination services, for example, Volkmar and Weisner’s (2009) book A Practical Guide to Autism: What Every Parent, Family Member, and Teacher Needs to Know or the web-based Autism Speaks 100 Day Kit (http://www.autismspeaks.org/family-services/tool-kits/100-day-kit). Benefits of formally structured psychoeducational programs for the parents are also well known, not only in increasing parental knowledge and encouraging advocacy skills but also in reducing stress and feelings of isolation (Tonge et al., 2006). An interesting question is whether it is the informational aspect of this training, the social support provided by the group format, or an interaction of both that produces improvements in parent well-being (Daley, Singhal, Weisner, Barua, & Brezis, 2013; Farmer & Reupert, 2013). Regardless of the mechanism, it seems that broad psychoeducational programs that teach parents about autism and behavioral management strategies in a didactic format, under the category of parent-support interventions, have consistently resulted in reductions in parent distress.

Parent Mental Health and Well-Being in the Context of Parent-Mediated Interventions

Several studies suggest the high levels of parenting stress may interfere with the efficacy of parent-mediated interventions for young children with ASD (Osborne, McHugh, Saunders, & Reed, 2008; Stadnick, Stahmer, & Brookman-Frazee, 2015). At the same time, other authors report that a certain level of parenting stress actually improved parent implementation of intervention strategies during everyday interactions (Alquraini & Mahoney, 2015). It has also been documented that mothers who are less depressed and angry are more likely to actively engage with their children with autism in healthier and more consistent ways (Gray, 2002; Smith, Seltzer, Tager-Flusberg, Greenberg, & Carter, 2008; Vail & Xenakis, 2007). For this reason, the term “parenting distress ” (instead of “stress”) may be more appropriate to describe the general lack of well-being reported by some of these parents. In any case, these findings warrant further research into what mechanisms are in play in parent-mediated interventions. Chapter 8, “ Parental insightfulness into the inner world of the child with autism: Its significance for the child and implications for parent-mediated interventions”, introduces parent insightfulness, the capacity to see and feel things from the child’s point of view, as a crucial capacity for interventions.

Although the severity of a child’s autism symptoms and behaviors has consistently been found to be one of the strongest predictors of parental distress (Davis & Carter, 2008; Hastings et al., 2005; Ingersoll & Hambrick, 2011; Lyons, Leon, Roecker Phelps, & Dunleavy, 2010), it does not necessarily follow that parent-mediated interventions addressing the child’s symptoms will have a positive effect on the parents’ well-being: research does not always indicate there is a linear positive relationship between the two. Variables like lack of social support and ineffective coping styles, such as avoidance, contribute significantly to parent distress (Mancil, Boyd, & Bedesem, 2009; Tehee, Honan, & Hevey, 2009). Furthermore, some studies exploring parent distress following parent-mediated interventions for children with autism indicate no improvements when the children’s symptoms improve (Drew et al., 2002; Kasari, Gulsrud, Paparella, Hellemann, & Berry, 2015), while others demonstrate mixed findings (e.g., Bradshaw et al., 2017). This is in contrast with the consistent reductions in parent distress shown by the psychoeducational programs mentioned above (Tonge et al., 2006). However, psychoeducational programs are not designed to support parent mental health and overall quality of life.

Self-Help for Parents of Children with ASD

In the current chapter, we would like to argue that the taxonomy of parent-training interventions proposed by Bearss et al. (2015) should be amended by adding a group of interventions that primarily target parents and aim to improve parental mental health and well-being (i.e., self-help interventions). These interventions are similar to other interventions in the broader category of parent support in that they also focus on the parent while the child is an indirect beneficiary. However, these interventions differ from care coordination services and psychoeducational programs in that the focus goes beyond meeting the parents’ informational needs. Not only do we think it is necessary to consider the parents’ mental health and well-being in any intervention for their children with autism, we will offer preliminary evidence that such a program is feasible and promising for the parents and for the children. We also encourage researchers to verify and quantify the impact of such programs on the children to understand better the role of stress in parents’ participation in the children’s intervention.

There is a vast literature describing the challenges of being a parent of a child with autism. These parents are more likely to divorce than parents of typically developing children (Hartley et al., 2010). They also have greatly increased loss of income: the lifetime cost of care and loss of revenue for a family with one child with ASD has been estimated to be between $1.4 and $2.4 M, depending on the level of the child’s disability (Buescher, Cidav, Knapp, & Mandell, 2014). Additional data show diminished maternal health-related quality of life (Allik, Larsson, & Smedje, 2006), increased problems in physical health and bodily pain (Khanna et al., 2011), and increased depression, anxiety, and emotional distress (Estes et al., 2013; Hayes & Watson, 2013; Jeans, Santos, Laxman, McBride, & Dyer, 2013; Schieve, Blumberg, Rice, Visser, & Boyle, 2007; Weitlauf, Vehorn, Taylor, & Warren, 2014).

On the other hand, epidemiological data (Mandell et al., 2012) looking at 28,428 Medicaid-enrolled families showed that each $1000 increase in spending on respite care during the preceding 60 days resulted in an 8% decrease in the odds of hospitalization for the children with autism. Surprisingly, the use of therapeutic services was not associated with reduced risk of hospitalization. In conclusion, the best investment for a family to avoid hospitalization of their child with autism seems to be just respite for the parents. Although an improvement in the children’s symptoms may not automatically improve parental well-being, Mandell et al.’s study strongly suggests the reverse: improvement in parental well-being may help the child.

Although there is an abundance of studies describing parents’ psychological distress, relatively few studies address it directly. This is a shocking finding, given the ethical and practical considerations supporting this line of research: the consensus is that enhancing the parents’ quality of life does not only reduce the family burdens but may increase their ability to contribute to their children’s progress in treatment and education. A recent review by Da Paz and Wallander (2017) lists only 13 studies that targeted improvements in mental health for parents of children with autism. Five of them were pre-post quasi-experimental designs, with no control groups, and eight were randomized controlled trials (RCTs).

Da Paz and Wallander (2017) conclude in their review that interventions using Stress Management and Relaxation Techniques, Expressive Writing, Mindfulness-Based Stress Reduction, and Acceptance and Commitment Therapy are promising interventions at improving the mental health for parents of children with ASD. Among the eight RCT studies summarized in this article, six suggest a reasonable likelihood of efficacy, based on medium to large size effects post-intervention. Feinberg et al. (2014) used Problem-Solving Education (PSE), a manualized cognitive behavioral therapy (CBT) program that helped participants identify feelings associated with a problem to be able to focus on the solution and generate a plan to achieve the solution. Expressive Writing (EW), also known as written emotional disclosure, was employed by Campbell (2003), whose participants were encouraged to divulge personally traumatic events in a nonthreatening environment. Kowalkowski (2013) tested a protocol combining mindfulness and Acceptance and Commitment Therapy, with parents being taught acceptance, rather than avoidance of undesirable feelings, and awareness of their own stream of thoughts without judgmental reaction. Finally, three additional studies used mindfulness with different variations, including Mindfulness-Based Stress Reduction (MBSR) (Benn, Akiva, Arel, and Roeser (2012), Dykens, Fisher, Taylor, Lambert, and Miodrag (2014), and Ferraioli and Harris (2013).

Smaller effects were found in one of the two remaining RCT studies, conducted by LaPlante (2013), who used the Three Good Things (TGT) technique, a protocol derived from positive psychology that charges participants to find three good things that happened during their day and helps individuals reappraise their unpleasant experiences, focus on more positive aspects of their lives, and achieve overall well-being. Finally, the only negative effects were reported by Whitney and Smith (2015), due to the short-term distress that EW produces. The lack of a follow-up assessment in this study potentially prevented a positive finding, unlike Campbell (2003), who did observe improvement at that time point following EW.

For the quasi-experimental designs in Paz and Wallander’s review (2017), the studies using biofeedback training and family systems therapy did not produce significant results in parent mental health outcomes. Family systems therapy (FST) is conceptualized to include all members of the family while taking into consideration subgroups of interactions such as parent-child, sibling-child, and marital relationships (Morgan, 1988). Peck (1998) used FST, stress management techniques, ASD education, parent self-advocacy, and social support and reported nonsignificant findings on parenting stress. Bitsika and Sharpley’s results (2000), using biofeedback training and relaxation techniques, were also nonsignificant for anxiety, depression, and parenting self-efficacy. The studies using ACT (Blackledge & Hayes, 2006) and relaxation training (Gika et al., 2012) reportedly produced significant improvements in psychological well-being and life satisfaction and decreases in negative consequences, such as depression and parental stress.

Studies that resulted in positive effects in parenting stress, general health (including anxiety, insomnia, and depression), and parental distress and anxiety also showed maintenance of gains 2 to 3 months after completion of the study (Da Paz & Wallander, 2017). Only one study (Dykens et al., 2014), using MBSR, assessed treatment effects past 2–3 months and showed continued, medium effects sizes after 6 months. Overall, the biggest effects were shown in the studies using MBSR, suggesting that mindfulness may be a promising treatment for parents caring for a child with autism.

Mindfulness meditation refers to a group of self-regulation practices, derived from Buddhism but secular, “that focus on training attention and awareness in order to bring mental processes under greater voluntary control and thereby foster general mental well-being and development and/or specific capacities such as calmness, clarity, and concentration” (Walsh & Shapiro, 2006, p. 228). Although there are different protocols for meditation practice, for example, MBSR, mindful awareness is an essential component in all. Mindfulness refers to the ability to pay attention and retain specific information, whether the object of attention is specific (e.g., breathing) or open (i.e., mental experience from moment to moment). Mindfulness meditation can be an effective coping strategy with the potential to help individuals under distress, including parents of children with autism. A large number of published research articles consistently show mental as well as physical health benefits of mindfulness meditation for short- or long-term practitioners (see Grossman, Niemann, Schmidt, & Walach, 2004, and Davis & Hayes, 2011, for comprehensive reviews).

Among all these findings, it is noteworthy, although expected, that one of the largest effects at outcome is observed in parenting stress, as measured by the total score of the Parenting Stress Index or PSI (Dykens et al., 2014; Feinberg et al., 2014; Ferraioli & Harris, 2013; Kowalkowski, 2013). Effects are also found in the parent-child interaction subscale of the PSI (Benn et al., 2012), parenting self-efficacy as measured by the Parenting Sense of Competence Scale or PSOC (LaPlante, 2013), family climate (Campbell, 2003), and self-compassion (Benn et al., 2012). In other words, parent well-being includes a myriad of outcomes that are directly related to parenting, like parent-child interactions and parenting self-efficacy. None of these studies however assessed direct benefits for the participants’ children with autism.

Also missing in Paz and Wallander’s review, with the exception of Peck (1998), is a component in the training that would help parents reduce their social isolation. Other than the fact that most of these programs were developed in a group format, and therefore it was assumed that this may have contributed to the positive outcomes, there is no formal training on social skills or direct assessment of benefits in social competence. As we saw earlier, this is an element that most psychoeducational programs capitalize upon and something that should also be included in self-help programs as well. A training that targets social skills in parents will not only help reduce feelings of isolation but will also empower them to be better advocates for their children in increasingly difficult healthcare and education systems.

More Than Self-Help for Parents: Social Competence

Enhancing the quality of life and engagement of parents in the care of children with autism should be a major priority in interventions. And yet, professionals in the field of autism often communicate with these families as if they existed in a sociocultural vacuum, ignoring their sociocultural background and individual context. We live nowadays in an increasingly diverse society, and healthcare and education systems face the unique challenge to recognize these differences in background and context if they want to operate effectively. In the USA, for example, for the first time in history, almost half (49.5%) of American children under the age of 5 are of a nonwhite racial or ethnic minority group according to estimates for July 1, 2015 by the US Census Bureau (US Census Bureau, 2016), despite a predominantly Anglo-Saxon ancestry and tradition.

Cultural and socioeconomic differences are the focus of attention in numerous medical and health scientific journals due to great disparities in health outcomes in a large number of medical conditions, including autism (CDC, 2012, 2014). Such disparities in healthcare have led the US Department of Health and Human Services to underline the importance of cultural competence in providers, stating that “cultural competency is one the main ingredients in closing the disparities gap in health care” and “health care services that are respectful of and responsive to the health beliefs, practices and cultural and linguistic needs of diverse patients can help bring about positive health outcomes” (US Department of Health and Human Services, 2001).

The focus has been naturally to train providers in being socially and culturally sensitive. Care coordination services, as we mentioned above, respond to the need to help the families navigate in a healthcare system that has become highly academic and bureaucratic. There is a need for families to communicate with providers, as much as for providers to communicate with the families, and doing this not by adding another burden to the family’s heavy load of responsibilities but by releasing them from the distress that may come from communicating and interacting with professionals they do not always understand. This is a major issue when raising a child with autism. We believe that it would not only be beneficial, but also possible, to teach parents basic social skills, e.g., assertion with healthcare professionals, while targeting stress reduction.

Sue and Sue’s model (2002) describes cultural competence in professionals as involving (1) awareness of oneself own assumptions, values and beliefs, (2) knowledge of the worldviews of culturally diverse others, and (3) skills in the use of therapeutic modalities and interventions appropriate for culturally different clients. Awareness and knowledge/skills have then remained the two pivotal concepts when creating professional guidelines to help healthcare providers to work with culturally diverse groups, including those published by the American Psychological Association (APA , 2003). We could bring very similar principles to our population in need: awareness and knowledge/skills.

In more detail, awareness refers to being able to identify oneself and the others in context while acknowledging the differences and encouraging discussion about those differences. Knowledge and skills in culturally competent providers stem from this awareness but also from specific professional training and culturally sensitive resources, beyond the scope of parents’ possible repertoire of skills. For both providers and parents, it is necessary not to generalize cultural patterns to all members of a particular group and to acknowledge the vastness and richness of human diversity and the uniqueness of each person and their context. For that reason, we advocate for the term “social competence,” instead of cultural competence: it encompasses attention to differences among cultures as well as within cultures and brings the focus on the relation of two individuals and not simply on the differences of one of them compared to the “norm.” Our argument is also in consonance with the relatively new trend in healthcare to speak about relation-centered services, which emphasizes client-provider interaction, rather than simply patient-centered services (Nundy & Oswald, 2014).

Awareness and knowledge/skills are then necessary qualities for a parent to become more socially competent: awareness of our own views and the views of others, knowledge about those views, and skills to build the bridge between to “translate” our views to others and those of others for us. In other words, socially competent people should possess high self-awareness and awareness of others as well as sophisticated social skills. As we will describe below, there is a method to train both attention and social skills while reducing distress in parents of children with autism.

Compassion Training: A Potential Intervention for Families of Children with ASD

While there is abundant data on the distress associated with parenting a child with autism, there are also some studies indicating actual benefits for parents, such as increased spirituality (Ekas, Whitman, & Shivers, 2009) or increased compassion and acceptance of differences (Pakenham, Sofronoff, & Samios, 2004). Not enough research has been conducted on the personal characteristics and coping strategies of those resilient parents who successfully deal with autism. Neff and Faso (2014) suggest that self-compassion may be such a helpful coping strategy. According to these authors, self-compassion involves being kind to oneself in times of difficulty, recognizing the shared nature of human suffering, and being mindfully aware of negative thoughts and emotions. They reported that self-compassion was associated with well-being in 51 parents of a child with ASD, over and above the effects of child symptom severity: it was positively associated with life satisfaction, hope, and goal reengagement and negatively associated with depression and parental stress.

Compassion, on the other hand, can be defined as the motivation to remove others’ and one’s suffering, and it includes self-compassion as an essential feature. It is both a social skill and a coping strategy. Compassion from others, or social support, protects us from disease and even death (e.g., Broadhead et al., 1983). Remarkably, psychophysiological evidence suggests that social support is most beneficial, in turn, for those best able to take advantage of it: individuals high in compassion (Cosley, McCoy, Saslow, & Epel, 2010). In other words “If you want others to be happy, practice compassion. If you want to be happy, practice compassion” (the Dalai Lama, 2012, p. 48). The four mechanisms proposed by His Holiness the Dalai Lama (2012) when discussing the benefits of compassion for self are diversion (worrying less about ourselves), comparison (the fact that there are always worse problems than ours), problem-solving (engaging creatively in possible positive outcomes), and connectedness (feeling closer to others).

While compassion is considered to unfold naturally in some mindfulness meditative practices, there are also analytical meditation techniques that specifically promote compassion toward self and others. In this sense, compassion is more than a personal characteristic; it can be developed and expanded. CBCT® (Cognitively Based Compassion Training), developed and empirically validated at Emory University (Pace et al., 2009), and Compassion Cultivation Training (CCT), developed and empirically validated at Stanford University (Jazaieri et al., 2014), are two of the most frequently utilized manualized forms of compassion meditation training. Also available are Compassion-Focused Therapy (Gilbert, 2009) and, specifically for self-compassion, the Mindful Self-Compassion Training (Neff & Germer, 2013).

CBCT is a protocol for mindfulness and compassion meditation practice developed by Emory University’s Department of Religion Professor Geshe Lobsang Tenzin Negi, PhD., who is also director of the Emory-Tibet Partnership and director and founder of Drepung Loseling Monastery, Inc., a center under the patronage of His Holiness the Dalai Lama. CBCT is a secular and analytical practice based on the Tibetan Buddhist tradition of lojong, which means “mind training” or “thought transformation.” CBCT follows a strict protocol developed in August 2012 at Emory University and revised in September 2014 (Negi, 2012; Ozawa de Silva, Dodson-Lavelle, Raison, & Negi, 2012). It consists in its current format of six modules, two on mindfulness and four on compassion, taught in eight 2-hour-long or ten 90-minute-long weekly sessions with a certified teacher, with each session including instruction, discussion, and a 30- to 40-min-long meditation session.

The sessions include a series of sequential steps aimed to help practitioners progressively cultivate other-centered thoughts and behaviors while overcoming maladaptive, self-focused thoughts and behaviors. These are (1) developing attention and stability of mind through focused attention training, (2) cultivating insight into the nature of mental experience, (3) cultivating self-compassion, (4) developing equanimity and impartiality, (5) developing appreciation and affection for others, and (6) realizing engaged empathy and compassion. Topic overviews and their corresponding guided meditation recordings are available online for participants at http://www.tibet.emory.edu/cbct/CourseMaterials.html. CBCT-certified instructors follow a rigorous training that is to date only provided by Emory University. The contents of each of the six modules are summarized in Table 18.1.
Table 18.1

Themes and contents of each of the six modules of CBCT

Module 1: Developing attention and stability of mind. Participants are provided with an introduction to the concept of meditation, as well as basic breathing exercises to help them understand how to cultivate refined attention and mental stability

Module 2: Cultivating insight into the nature of mental experience. Building on basic meditation and refined attention strategies provided in module 1, participants are provided with guidance to use their meditative mind to gain insight into their own thoughts, feelings, emotions, and reactions

Module 3: Cultivating self-compassion. The focus is on observing the innate desire for happiness and Well-being, as well as freedom from unhappiness and dissatisfaction. Participants use meditation to focus on shedding toxic mental and emotional states that promote unhappiness

Module 4: Developing equanimity and impartiality. Participants are encouraged to examine the labels they assign to people in their lives (e.g., friends, adversaries, strangers, etc.) and to consider the superficiality of these labels. Meditations focus on connecting more deeply to others through understanding of the shared desire for happiness

Module 5: Developing appreciation and affection for others. Session focuses on recognizing the interdependence of all things and people. Participants are encouraged to consider the many ways in which they are dependent on others, so as to develop appreciation and gratitude for the people in their lives. Meditations seek to achieve this aim through 1) reflecting on the kindness of others, as well as the drawbacks of a self-centered attitude, 2) using gratitude to cultivate affection and endearment for others, promoting, in turn, a deep sense of empathy

Module 6: Realizing engaged empathy and compassion. The focus of this module is on using the gratitude and empathy cultivated in previous sessions to help participants cultivate compassion for themselves and others. Meditations focus on moving from wishing happiness for others to actively committing to assistance in the pursuit of happiness and freedom from suffering. Participants are also provided with strategies and tools to continue their compassion meditation training beyond the CBCT program

Recent research on the impact of 6–8 weeks of CBCT practice on undergraduate students without prior experience in meditation shows reduced immune inflammatory and emotional distress responses to psychosocial stressors (Pace et al., 2009), as well as enhancement of empathic accuracy when assigning emotions to other people’s faces with changes in the neurobiology supporting it (Mascaro, Rilling, Tenzin Negi, & Raison, 2013). In addition, CBCT has shown benefits with at-risk adolescents in foster care (Reddy et al., 2013), breast cancer survivors (Dodds et al., 2015), and medical students (Mascaro et al., 2016).

Little is known about the brain mechanisms of compassion, and CBCT in particular, when operating in response to real-life challenges. Some interesting insight comes from Desbordes et al.’s study (2012), when she compared the effects of a mindfulness-only training and CBCT (mindfulness and compassion) in a RCT using fMRI and self-reported measures of depression. When presenting participants with images of emotionally positive, neutral, and negative stimuli, they found decreased activity in the amygdala (a part of the brain that is typically used to assess the intensity of a person’s emotional response) for all participants, with one important exception. When looking at the negative stimuli, amygdala activation increased in the participants that took CBCT. The CBCT mindfulness-compassion group also showed a significant decrease in self-reported depression, compared to mindfulness-only participants. These findings suggest that although amygdala activation may be part of an empathic and compassionate response, other factors contribute to the person’s judgment of their general state of well-being: participants trained in CBCT may feel more, but they feel better. There is more to the complex subjective experience of an emotion than the brain assessment of the valence and intensity of the stimulus that provokes it. This is particularly relevant for people who deal with pervasive lifetime conditions, like autism, which could be considered challenges a priori, but do not necessarily lead to depression or distress for all.

Training in compassion and mindfulness meditation, and in CBCT in particular, has the potential to improve overall well-being and social competence and reduce distress in adults involved in the care of children with autism. Training in CBCT would affect directly the quality of social interactions (e.g., by increasing empathy) but also indirectly by reducing overall stress. More specifically, the mindfulness component of this training should be associated with a greater control of mental processes in the participants and therefore improve behavioral regulation and flexibility. In addition, the compassion component should enhance empathy and compassion, skills that will allow parents to take advantage of social support and navigate more skillfully the healthcare system. As a consequence, there should be a positive effect on parent stress level, on social competence (parent-child and parent-professional interactions), and, ultimately, on the children’s intervention outcomes.

CBCT for Parents of Children with Autism: A Pilot Experience at the Marcus Autism Center

We recently pilot-tested CBCT as an intervention for parents of children with autism at the Marcus Autism Center, in Atlanta, Georgia, with data recently presented at several international conferences (Fernandez-Carriba et al., 2015, 2016). Our attempt was both to offer a community-based service to this population and to collect empirical data on the feasibility of implementing this intervention eventually as a full-scale scientific efficacy study. We also hypothesized that engaging regularly in mindfulness and compassion-based meditation would reduce parenting distress, increase parent’s sense of competence, and improve parent ratings of child behavior.

The study had a quasi-experimental design , without a control group. The sample included 14 parents of children with ASD and 1 mother of a child with fetal alcohol syndrome (FAS) (age in years M ± SD = 44.7 ± 5.9; 12 females). Among the 15 participants, 11 completed the training, i.e., missed 3 classes or less out of 10 weekly sessions. Only six parents completed pre- and post-measures. There were also follow-up measures sent 2 months after the training, which three participants completed. One of the four parents who did not complete the program reported months later to have incorporated meditation as a habitual practice as a result of the class, and two more remained in touch with the researchers and attended an informational meeting on the results of the study.

Overall, results from this pilot research demonstrated the feasibility and social acceptability of this intervention. Although the intervention was delivered in a group format, emphasis was placed on the very personal learning and practice. Satisfaction was very high for all participants for whom there was data. In a scale from 1 to 7, 7 being the maximum satisfaction, ten participants responded 7 and one responded 6. All of them also said that “they would recommend it to a friend”; in fact four of them added that they had already done so.

Quantitative Results

Before and after the intervention period, parents completed a battery of self-report questionnaires. These measures included the following:
  • Stress and acceptance: Parenting Stress Index or PSI/SF, Perceived Stress Scale or PSS, and Acceptance and Action Questionnaire or AAQ

  • Empathy and compassion: Interpersonal Reactivity Index or IRI

  • Behavioral flexibility: Mindful Attention Awareness Scale or MAAS and Behavior Rating Inventory of Executive Function or BRIEF-A

  • Parent-child relationship: Parenting Sense of Competence Scale or PSOC

  • Perceived severity of the child’s symptoms: Aberrant Behavior Checklist or ABC-Irritability Scale

As Table 18.2 shows, there were significant changes in seven of the eight measures in the six participants who returned the questionnaires. These participants were also the ones who had the highest values in attendance and homework. First, the indices of distress (four scales out of five in the PSI, including the PSI total scale, and the PSS) showed significant lower values for these parents after the training. Second, acceptance, mindfulness, and parenting sense of competence increased significantly (AAQ scores went down and MAAS and PSOC scores went up). Third, executive functioning skills, including the ability to shift attention and focus on something new, significantly improved after intervention. Finally, and probably one of the most interesting findings, was that parent-reported disruptive behavior of the children with autism decreases from Time 1 to Time 2, as measured by the Irritability Scale of the ABC, significantly decreased. Only one parent reported changes in their child’s community or school intervention during the course of the study, suggesting that child gains may have been directly related to the CBCT training. Unfortunately, little can be said at this time about maintenance of benefits. Only three parents completed the measures 2 months after the training concluded, suggesting that at least some of these benefits were maintained.
Table 18.2

Pre-post changes in measures of distress, acceptance, empathy and compassion, behavior flexibility, parent-child relationship, and child’s perceived symptomatology in CBCT participants at the Marcus Center

Measure, estimate (95% CI)

Time 1 (M±SD)

Time 2 (M±SD)

P-value

Parent distress

   

PSI – defensive responding

23.2 (5.4)

15.6 (5.03)

0.003

PSI – parent distress

35 (7.18)

24.6 (7.7)

0.009

PSI – parent/child dysfunction

31.6 (10.31)

27.6 (8.56)

0.065

PSI – difficult child

43 (4.42)

35 (9.03)

0.029

PSI – total

109.6 (19.03)

87.2 (19.78)

0.003

PSS

20.83 (2.79)

10.33 (2.94)

0.005

Acceptance

   

AAQa

23.6 (6.1)

14.2 (1.92)

0.019

Empathy and compassion

   

IRI – perspective taking

20.67 (2.94)

23.17 (3.25)

0.166

IRI – fantasy

17.5 (4.89)

14.17 (9.43)

0.441

IRI – empathic concern

20.5 (4.59)

24.5 (1.64)

0.041

IRI – personal distress

13.17 (3.37)

11.5 (6.57)

0.541

Behavior flexibility

   

BRIEF – behavioral regulationa

55 (4.73)

45.33 (5.68)

0.006

BRIEF – metacognitiona

56 (5.33)

48.5 (5.05)

0.003

BRIEF – global composite scorea

83.17 (5.60)

64.33 (6.53)

<0.001

MAAS

42.2 (4.92)

67 (10.39)

0.004

Parent-child relationship

   

PSOC

68 (6.36)

79.8 (3.42)

0.008

Perceived child’s symptomatology

   

ABC-I

8.6 (5.18)

5.4 (4.51)

0.009

Note: PSI refers to Parenting Stress Index (Abidin, 1995), PSS to Perceived Stress Scale (Cohen, Kamarck, & Mermelstein, 1983), AAQ to Acceptance and Action Questionnaire (MacDonald, Hastings, & Fitzsimons, 2010), IRI to Interpersonal Reactivity Index (Davis, 1980), MAAS to Mindful Attention Awareness Scale (Brown & Ryan, 2003), BRIEF-A to Behavior Rating Inventory of Executive Function (Roth, Isquith, & Gioia, 2000), PSOC to Parenting Sense of Competence Scale (Gibaud-Wallston & Wandersman, 1978), and ABC-I to Aberrant Behavior Checklist-Irritability Scale (Aman, Singh, Stewerat, & Field, 1985)

P-values in bold are at the 0.05 significance level

aInterpretation is inversed for results of the AAQ and the BRIEF scales. Higher scores indicate lower acceptance and lower behavioral flexibility, respectively

Qualitative Results

Qualitative analysis of a small number of testimonials shared by the participants upon completion of the training indicated a number of common themes. Specifically, a general experience of self-growth and feeling of compassion emerged toward self (despite nonsignificant changes in the IRI scale). An increased sense of control, enhancement of coping skills, facilitation of interpersonal abilities, and broadening of perspective were also identified. For instance, one participant stated, “CBCT is allowing me to take care of my son in a much healthier way.” Another one extended her experience to an interaction with a provider, “My frustration with that provider dissolved when I started to think of her as another confused human being; she didn’t have the information I needed but I remained open enough to see that she could be helpful in other ways, and she was.”

Other themes participants reported included feeling validated, recognizing the universality of their difficulties, being more able to accept their feelings, and having hope in their capacity to face challenges. Finally, the experience of normalization of personal struggles was also revealed through this analysis. “The CBCT program shows we are human, we can be balanced,” shared one of the participants. And another one added, “Two weeks into CBCT I was told that something about me had changed; I was not so argumentative, something had opened up.”

As reported in Marchant (2016), one of our participants eloquently described her experience in the CBCT training, not only the success of her participation in the program but also her new understanding and acceptance of her life experience with her children’s autism:

<<CBCT is now being taught in a range of communities at risk of stress, including breast cancer survivors, veterans with PTSD, native Americans – and autism carers. For Fhena, the course, led by Marcus Center psychologist Samuel Fernandez-Carriba, was a revelation. “The fog started clearing,” she says. During the course, Fhena says she realized that autism had come to define her children in her eyes. “All you see is a burden. It was robbing me of so much I could give to them.” Instead of being overwhelmed by her own stress and misery, she started to view the world from her kids’ perspective and to see them as people in their own right. “In the class, I released a feeling of entitlement,” she says. “The feeling that I was supposed to have a life without these challenges.” She had always tried to be a good person. “I thought, this isn’t what I put into the pot, why am I getting this out?

Then I realized. These special beings were given to me because of what I put into the pot.”

And with that single thought, much of the stress in Fhena’s life disintegrated. Instead of feeling bitter and resentful, “I’m enjoying being with them.” And her children have responded beautifully. “Every day there is a new blossoming,” she says. “Ahav is drawing cruiseships in 3D detail. Analiel is writing 25 songs a day.” And the best moment of all is when Ahav said “Mommy, I’m so proud of you. Because I know that you love me even more now.”>>

Taken together, these promising results indicate that CBCT is a feasible training for parents of children with ASD, with potential benefits on their stress, on their parenting sense of competence, and on their perceived children’s severity. A randomized controlled trial should test its efficacy under controlled conditions.

Conclusions

Despite the active role parents have been given in the last few decades in the interventions designed for their children with autism, there is very limited research on the mechanisms that make their participation most helpful for themselves and the children. There is also a large corpus of data on their distress and lack of quality of life, while much less attention has been paid to how to address these challenges, other than treating directly the symptoms of their children. Although parent distress can negatively impact children’s outcome, it does not follow that improvements in children’s severity are associated with improvements in the parents’ well-being, suggesting that there is more to a person’s distress than their challenging circumstances, e.g., their coping strategies with those circumstances and level of social isolation. The question about how exactly a self-help program for the parents may benefit their children warrants further investigation. We propose mindfulness and compassion meditation, and CBCT in particular, as a feasible, potentially helpful training in stress reduction and social competence for parents of children with autism. Its focus on self-regulation and social regulation, two well-known difficulties in the life of families living with autism, makes it especially fitting. Empowering the parents this way, we believe, will benefit their children.

References

  1. Abidin, R. R. (1995). Parenting stress index, short form (3rd ed.). Odessa, FL: Psychological Assessment Resources, Inc.Google Scholar
  2. Agency for Healthcare Research and Quality. (2014). Chapter 2. What is care coordination? In Care Coordination Measures Atlans Update. Rockville, MD.: Retrieved from http://www.ahrq.gov/professionals/prevention-chronic-care/improve/coordination/atlas2014/chapter2.html
  3. Allik, H., Larsson, J., & Smedje, H. (2006). Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism. Health and Quality of Life Outcomes, 4, 1.CrossRefGoogle Scholar
  4. Alquraini, T., & Mahoney, G. (2015). An exploratory investigation of the role of parenting stress in relationship focused intervention. Journal of Applied Research in Intellectual Disabilities, 28(6), 536–547. https://doi.org/10.1111/jar.12148CrossRefPubMedGoogle Scholar
  5. Aman, M. G., Singh, N., Stewerat, A., & Field, C. (1985). The aberrant behavior checklist: A behavior rating scale for the assessment of treatment effects. American Journal of Mental Deficiency, 89(5), 492–502.PubMedGoogle Scholar
  6. American Psychological Association. (2003). Guidelines on multicultural education, training, research, practice and organizational change for psychologists. American Psychologist, 58, 377–402.CrossRefGoogle Scholar
  7. Barton, E. E., & Harn, B. (2012). Educating young children with autism spectrum disorders. Thousand Oaks, CA: Corwin Press.CrossRefGoogle Scholar
  8. Bearss, K., Burrell, T. L., Stewart, L., & Scahill, L. (2015). Parent training in autism Spectrum disorder: What’s in a name? Clinical Child and Family Psychology Review, 18(2), 170–182. https://doi.org/10.1007/s10567-015-0179-5CrossRefPubMedPubMedCentralGoogle Scholar
  9. Benn, R., Akiva, T., Arel, S., & Roeser, R. W. (2012). Mindfulness training effects for parents and educators of children with special needs. Developmental Psychology, 48(5), 1476–1487. https://doi.org/10.1037/a0027537CrossRefPubMedGoogle Scholar
  10. Blackledge, J. T., & Hayes, S. C. (2006). Using acceptance and commitment training in the support of parents of children diagnosed with autism. Child & Family Behavior Therapy, 28(1), 1–18. https://doi.org/10.1300/J019v28n01_01CrossRefGoogle Scholar
  11. Bradshaw, J. Koegel, L. & Koegel, R. (2017). Improving Functional Language and Social Motivation with a Parent-Mediated Intervention for Toddlers with Symptoms of Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 47(8), 2443–2458. https://doi: 10.1007/s10803-017-3155-8.Google Scholar
  12. Broadhead, W. E., Kaplan, B. H., James, S. A., Wagner, E. H., Schoenbach, V. J., Grimson, R., … Gehlbach, S. H. (1983). The epidemiologic evidence for a relationship between social support and health. American Journal of Epidemiology, 117(5), 521–537. https://doi.org/10.1093/OXFORDJOURNALS.AJE.A113575CrossRefPubMedGoogle Scholar
  13. Brookman-Frazee, L., Stahmer, A., Baker-Ericzén, M. J., & Tsai, K. (2006). Parenting interventions for children with autism Spectrum and disruptive behavior disorders: Opportunities for cross-fertilization. Clinical Child and Family Psychology Review, 9(3–4), 181–200. https://doi.org/10.1007/s10567-006-0010-4CrossRefPubMedPubMedCentralGoogle Scholar
  14. Brown, K. W., & Ryan, R. M. (2003). The benefits of being present: Mindfulness and its role in psychological Well-being. Journal of Personality and Social Psychology, 84(4), 822–848.CrossRefGoogle Scholar
  15. Buescher, A. V. S., Cidav, Z., Knapp, M., & Mandell, D. S. (2014). Costs of autism Spectrum disorders in the United Kingdom and the United States. JAMA Pediatrics, 168(8), 721. https://doi.org/10.1001/jamapediatrics.2014.210CrossRefPubMedGoogle Scholar
  16. Campbell, N. B. (2003). Emotional disclosure through writing: An intervention to facilitate adjustment to having a child with autism.Google Scholar
  17. Centers for Disease Control and Prevention. (2012). Prevalence of autism spectrum disorders: Autism and developmental disabilities monitoring network, 14 sites, United States, 2008. Morbidity and Mortality Weekly Report, 61(3), 1–18.Google Scholar
  18. Centers for Disease Control and Prevention. (2014). Prevalence of autism spectrum disorders among children aged 8 years: Autism and developmental disabilities monitoring network, 11 sites, United States, 2010. Morbidity and Mortality Weekly Report, 63(2), 1–22.Google Scholar
  19. Cohen, S., Kamarck, T., & Mermelstein, R. (1983). A global measure of perceived stress. Journal of Health and Social Behavior, 24(4), 385–396.CrossRefGoogle Scholar
  20. Cosley, B. J., McCoy, S. K., Saslow, L. R., & Epel, E. S. (2010). Is compassion for others stress buffering? Consequences of compassion and social support for physiological reactivity to stress. Journal of Experimental Social Psychology, 46, 816. https://doi.org/10.1016/j.jesp.2010.04.008CrossRefGoogle Scholar
  21. Da Paz, N. S., & Wallander, J. L. (2017). Interventions that target improvements in mental health for parents of children with autism spectrum disorders: A narrative review. Clinical Psychology Review, 51, 1–14. https://doi.org/10.1016/j.cpr.2016.10.006CrossRefPubMedGoogle Scholar
  22. Daley, T. C., Singhal, N., Weisner, T., Barua, M., & Brezis, R. S. (2013). Evaluation of an acceptance and empowerment parent training model: Evidence from an intervention in India. In Integrated educational session on parent training and parent mediated intervention in diverse contexts at the international meeting for autism research. San Sebastian, Spain.Google Scholar
  23. Davis, D. M., & Hayes, J. A. (2011). What are the benefits of mindfulness? A practice review of psychotherapy-related research. Psychotherapy, 48(2), 198–208. https://doi.org/10.1037/a0022062CrossRefPubMedGoogle Scholar
  24. Davis, M. H. (1980). A multidimensional approach to individual differences in empathy. JSAS Catalog of Selected Documents in Psychology, 10, 85.Google Scholar
  25. Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism Spectrum disorders: Associations with child characteristics. Journal of Autism and Developmental Disorders, 38(7), 1278–1291. https://doi.org/10.1007/s10803-007-0512-zCrossRefPubMedGoogle Scholar
  26. Desbordes, G., Negi, L. T., Pace, T. W., Wallace, B., Raison, C. L., & Schwartz, E. L. (2012). Effects of mindful-attention and compassion mediation training on amygdala response to emotional stimuli in an ordinary, non-meditative state. Frontiers In Human Neuroscience., 6. https://doi.org/10.3389/fnhum.2012.00292
  27. Dodds, S. E., Pace, T. W. W., Bell, M. L., Fiero, M., Negi, L. T., Raison, C. L., & Weihs, K. L. (2015). Feasibility of cognitively-based compassion training (CBCT) for breast cancer survivors: A randomized, wait list controlled pilot study. Supportive Care in Cancer, 23(12), 3599–3608. https://doi.org/10.1007/s00520-015-2888-1CrossRefPubMedGoogle Scholar
  28. Drew, A., Baird, G., Baron-Cohen, S., Cox, A., Slonims, V., Wheelwright, S., … Charman, T. (2002). A pilot randomised control trial of a parent training intervention for pre-school children with autism. European Child & Adolescent Psychiatry, 11(6), 266–272. https://doi.org/10.1007/s00787-002-0299-6CrossRefGoogle Scholar
  29. Dykens, E. M., Fisher, M. H., Taylor, J. L., Lambert, W., & Miodrag, N. (2014). Reducing distress in mothers of children with autism and other disabilities: A randomized trial. Pediatrics, 134(2), e454.CrossRefGoogle Scholar
  30. Ekas, N. V., Whitman, T. L., & Shivers, C. (2009). Religiosity, spirituality, and socioemotional functioning in mothers of children with autism Spectrum disorder. Journal of Autism and Developmental Disorders, 39(5), 706–719. https://doi.org/10.1007/s10803-008-0673-4CrossRefPubMedGoogle Scholar
  31. Estes, A., Olson, E., Sullivan, K., Greenson, J., Winter, J., Dawson, G., & Munson, J. (2013). Parenting-related stress and psychological distress in mothers of toddlers with autism spectrum disorders. Brain & Development, 35(2), 133–138. https://doi.org/10.1016/j.braindev.2012.10.004CrossRefGoogle Scholar
  32. Farmer, J., & Reupert, A. (2013). Understanding autism and understanding my child with autism: An evaluation of a group parent education program in rural Australia. Australian Journal of Rural Health, 21(1), 20–27. https://doi.org/10.1111/ajr.12004CrossRefPubMedGoogle Scholar
  33. Feinberg, E., Augustyn, M., Fitzgerald, E., Sandler, J., Ferreira-Cesar Suarez, Z., Chen, N., … Silverstein, M. (2014). Improving maternal mental health after a child’s diagnosis of autism spectrum disorder: Results from a randomized clinical trial. JAMA Pediatrics, 168(1), 40–46. https://doi.org/10.1001/jamapediatrics.2013.3445CrossRefPubMedGoogle Scholar
  34. Fernandez-Carriba, S., Robbins, E., Jarzabek, E., Dodson-Lavelle, B., Ozawa-de Silva, B., Pace, T., Raison, C.L., Rochat, P., & Negi, L.T. (2015). Compassion meditation in parents of children with ASD and potential effects on stress, parenting skills and children’s outcomes. The International Meeting for Autism Research (IMFAR). Salt Lake City, UT.Google Scholar
  35. Fernandez-Carriba, S., Mendelson, J., Gillespie, S., Saulnier, S., Klin, A. (2016). Cognitively Based Compassion Training for Parents of Children with Autism Spectrum Disorder: A Pilot Study. Mind and Life International Symposium for Contemplative Studies. San Diego, CA.Google Scholar
  36. Ferraioli, S. J., & Harris, S. L. (2013). Comparative effects of mindfulness and skills-based parent training programs for parents of children with autism: Feasibility and preliminary outcome data. Mindfulness, 4(2), 89–101. https://doi.org/10.1007/s12671-012-0099-0CrossRefGoogle Scholar
  37. Gibaud-Wallston, J., & Wandersman, L. P. (1978). Development and utility of the parenting sense of competence scale. Paper presented at the annual meeting of the American Psychological Association, Toronto.Google Scholar
  38. Gika, D. M., Artemiadis, K., Alexopoulos, E. C., Darviri, C., Papanikolaou, K., & Chrousos, G. P. (2012). Use of a relaxation technique by mothers of children with autism: A case-series study. Psychological Reports, 111(3), 797–804. https://doi.org/10.2466/20.15.21.PR0.111.6.797-804CrossRefPubMedGoogle Scholar
  39. Gilbert, P. (2009). Introducing compassion-focused therapy. Advances in Psychiatric Treatment, (3), 15, 199.Google Scholar
  40. Gray, D. E. (2002). Ten years on: A longitudinal study of families of children with autism. Journal of Intellectual and Developmental Disability, 27(3), 215–222. https://doi.org/10.1080/1366825021000008639CrossRefGoogle Scholar
  41. Grossman, P., Niemann, L., Schmidt, S., & Walach, H. (2004). Mindfulness-based stress reduction and health benefits: A meta-analysis. Journal of Psychosomatic Research, 57(1), 35–43. https://doi.org/10.1016/S0022-3999(03)00573-7CrossRefPubMedGoogle Scholar
  42. Hartley, S. L., Barker, E. T., Seltzer, M. M., Floyd, F., Greenberg, J., Orsmond, G., & Bolt, D. (2010). The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of Family Psychology, 24(4), 449–457. https://doi.org/10.1037/a0019847CrossRefPubMedPubMedCentralGoogle Scholar
  43. Hastings, R. P., Kovshoff, H., Ward, N. J., Espinosa, F. d., Brown, T., & Remington, B. (2005). Systems analysis of stress and positive perceptions in mothers and fathers of pre-school children with autism. Journal of Autism and Developmental Disorders, 35(5), 635–644. https://doi.org/10.1007/s10803-005-0007-8CrossRefPubMedGoogle Scholar
  44. Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629–642. https://doi.org/10.1007/s10803-012-1604-yCrossRefPubMedPubMedCentralGoogle Scholar
  45. Ingersoll, B., & Hambrick, D. Z. (2011). The relationship between the broader autism phenotype, child severity, and stress and depression in parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5(1), 337–344. https://doi.org/10.1016/j.rasd.2010.04.017CrossRefGoogle Scholar
  46. Jazaieri, H., McGonigal, K., Jinpa, T., Doty, J. R., Gross, J. J., & Goldin, P. R. (2014). A randomized controlled trial of compassion cultivation training: Effects on mindfulness, affect, and emotion regulation. Motivation and Emotion, 38(1), 23–35. https://doi.org/10.1007/s11031-013-9368-zCrossRefGoogle Scholar
  47. Jeans, L. M., Santos, R. M., Laxman, D. J., McBride, B. A., & Dyer, W. J. (2013). Examining ECLS-B: Maternal stress and depressive symptoms when raising children with ASD. Topics in Early Childhood Special Education, 33(3), 162–171. https://doi.org/10.1177/0271121413481680CrossRefGoogle Scholar
  48. Kasari, C., Gulsrud, A., Paparella, T., Hellemann, G., & Berry, K. (2015). Randomized comparative efficacy study of parent-mediated interventions for toddlers with autism. Journal of Consulting and Clinical Psychology, 83(3), 554–563. https://doi.org/10.1037/a0039080CrossRefPubMedPubMedCentralGoogle Scholar
  49. Khanna, R., Madhavan, S. S., Smith, M. J., Patrick, J. H., Tworek, C., & Becker-Cottrill, B. (2011). Assessment of health-related quality of life among primary caregivers of children with autism Spectrum disorders. Journal of Autism and Developmental Disorders, 41(9), 1214–1227. https://doi.org/10.1007/s10803-010-1140-6CrossRefPubMedGoogle Scholar
  50. Kowalkowski, J. (2013). The impact of a group-based acceptance and commitment therapy intervention on parents of children diagnosed with an autism Spectrum disorder. Master’s theses and doctoral dissertations.Google Scholar
  51. LaPlante, A. M. (2013). The effectiveness of a positive psychology intervention with parents of children with autism spectrum disorders. ((Doctoral dissertation). Retrieved from PsycINFO database).Google Scholar
  52. Lyons, A. M., Leon, S. C., Roecker Phelps, C. E., & Dunleavy, A. M. (2010). The impact of child symptom severity on stress among parents of children with ASD: The moderating role of coping styles. Journal of Child and Family Studies, 19(4), 516–524. https://doi.org/10.1007/s10826-009-9323-5CrossRefGoogle Scholar
  53. MacDonald, E. E., Hastings, R. P., & Fitzsimons, E. (2010). Psychological acceptance mediates the impact of the behaviour problems of children with intellectual disability on fathers’ psychological adjustment. Journal of Applied Research in Intellectual Disabilities, 23(1), 27–37.CrossRefGoogle Scholar
  54. Mancil, G., Boyd, B., & Bedesem, P. (2009). Parental stress and autism: Are there useful coping strategies? Education and Training in Developmental Disabilities, 44(4), 523–537.Google Scholar
  55. Mandell, D. S., Xie, M., Morales, K. H., Lawer, L., McCarthy, M., & Marcus, S. C. (2012). The interplay of outpatient services and psychiatric hospitalization among Medicaid-enrolled children with autism Spectrum disorders. Archives of Pediatrics & Adolescent Medicine, 166(1), 68. https://doi.org/10.1001/archpediatrics.2011.714CrossRefGoogle Scholar
  56. Marchant, J. (2016). Cure: A journey into the science of mind over body. New York, NY: Crown Publishers.Google Scholar
  57. Mascaro, J. S., Kelley, S., Darcher, A., Negi, L. T., Worthman, C., Miller, A., & Raison, C. (2016). Meditation buffers medical student compassion from the deleterious effects of depression. The Journal of Positive Psychology, 1–10. https://doi.org/10.1080/17439760.2016.1233348
  58. Mascaro, J. S., Rilling, J. K., Tenzin Negi, L., & Raison, C. L. (2013). Compassion meditation enhances empathic accuracy and related neural activity. Social Cognitive and Affective Neuroscience, 8(1), 48–55. https://doi.org/10.1093/scan/nss095CrossRefPubMedGoogle Scholar
  59. Morgan, S. B. (1988). The autistic child and family functioning: A developmental-family systems perspective. Journal of Autism and Developmental Disorders, 18(2), 263–280. https://doi.org/10.1007/BF02211952CrossRefPubMedGoogle Scholar
  60. Neff, K. D., & Faso, D. J. (2014). Self-compassion and well-being in parents of children with autism. Mindfulness, 6(4), 938–947. https://doi.org/10.1007/s12671-014-0359-2CrossRefGoogle Scholar
  61. Neff, K. D., & Germer, C. K. (2013). A pilot study and randomized controlled trial of the mindful self-compassion program. Journal of Clinical Psychology, 69(1), 28–44. https://doi.org/10.1002/jclp.21923CrossRefPubMedGoogle Scholar
  62. Negi, L. T. (2012, revised in 2014). CBCT® (Cognitively-Based Compassion Training) Manual. Unpublished manuscript, Emory University, Atlanta, GA.Google Scholar
  63. Nundy, S., & Oswald, J. (2014). Relationship-centered care: A new paradigm for population health management. Healthcare, 2(4), 216–219. https://doi.org/10.1016/j.hjdsi.2014.09.003CrossRefPubMedGoogle Scholar
  64. Osborne, L. A., McHugh, L., Saunders, J., & Reed, P. (2008). Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. Journal of Autism and Developmental Disorders, 38(6), 1092–1103. https://doi.org/10.1007/s10803-007-0497-7CrossRefPubMedGoogle Scholar
  65. Ozawa de Silva, B. R., Dodson-Lavelle, B., Raison, C. L., & Negi, L. T. (2012). Compassion and ethics: Scientific and practical approaches to the cultivation of compassion as a Foundation for Ethical Subjectivity and Well-being. Journal of Healthcare, Science and the Humanities, 2(1), 145–161.Google Scholar
  66. Pace, T. W. W., Negi, L. T., Adame, D. D., Cole, S. P., Sivilli, T. I., Brown, T. D., … Raison, C. L. (2009). Effect of compassion meditation on neuroendocrine, innate immune and behavioral responses to psychosocial stress. Psychoneuroendocrinology, 34(1), 87–98. https://doi.org/10.1016/j.psyneuen.2008.08.011CrossRefPubMedGoogle Scholar
  67. Pakenham, K. I., Sofronoff, K., & Samios, C. (2004). Finding meaning in parenting a child with Asperger syndrome: Correlates of sense making and benefit finding. Research in Developmental Disabilities, 25(3), 245–264. https://doi.org/10.1016/j.ridd.2003.06.003CrossRefPubMedGoogle Scholar
  68. Parellada, M., Boada, L., Moreno, C., Llorente, C., Romo, J., Muela, C., & Arango, C. (2013). Specialty care programme for autism spectrum disorders in an urban population: A case-management model for health care delivery in an ASD population. European Psychiatry, 28, 102–109.CrossRefGoogle Scholar
  69. Peck, C. Z. (1998). Program evaluation of a family systems model of service delivery for parents of children with autism. Special Services in the Schools, 14(1–2), 127–145. https://doi.org/10.1300/J008v14n01_08CrossRefGoogle Scholar
  70. Reddy, S. D., Negi, L. T., Dodson-Lavelle, B., Ozawa-de Silva, B., Pace, T. W. W., Cole, S. P., & Craighead, L. W. (2013). Cognitive-based compassion training: A promising prevention strategy for at-risk adolescents. Journal of Child and Family Studies, 22(2), 219–230. https://doi.org/10.1007/s10826-012-9571-7CrossRefGoogle Scholar
  71. Rhodes, C., Stiles, K. M., & Hall, C. (2017). Role of care coordination in improving access to Services for Newly Diagnosed Children. 2017 International meeting for autism research (IMFAR). San Francisco, CA.Google Scholar
  72. Roth, R. M., Isquith, P. K., & Gioia, G. (2000). BRIEF-A – Behavior Rating Inventory of Executive Function- Adult Version. Odessa, FL: Psychological Assessment Resources.Google Scholar
  73. Schieve, L. A., Blumberg, S. J., Rice, C., Visser, S. N., & Boyle, C. (2007). The relationship between autism and parenting stress. Pediatrics, 119(Supplement_1), S114–S121. https://doi.org/10.1542/peds.2006-2089QCrossRefPubMedGoogle Scholar
  74. Smith, L. E., Seltzer, M. M., Tager-Flusberg, H., Greenberg, J. S., & Carter, A. S. (2008). A comparative analysis of Well-being and coping among mothers of toddlers and mothers of adolescents with ASD. Journal of Autism and Developmental Disorders, 38(5), 876–889. https://doi.org/10.1007/s10803-007-0461-6CrossRefPubMedPubMedCentralGoogle Scholar
  75. Stadnick, N. A., Stahmer, A., & Brookman-Frazee, L. (2015). Preliminary effectiveness of project ImPACT: A parent-mediated intervention for children with autism Spectrum disorder delivered in a community program. Journal of Autism and Developmental Disorders, 45(7), 2092–2104. https://doi.org/10.1007/s10803-015-2376-yCrossRefPubMedPubMedCentralGoogle Scholar
  76. Sue, D. W., & Sue, D. (2002). Counseling the culturally diverse: Theory and practice. New York, NY: Wiley.Google Scholar
  77. Tehee, E., Honan, R., & Hevey, D. (2009). Factors contributing to stress in parents of individuals with autistic Spectrum disorders. Journal of Applied Research in Intellectual Disabilities, 22(1), 34–42. https://doi.org/10.1111/j.1468-3148.2008.00437.xCrossRefGoogle Scholar
  78. The Dalai Lama. (2012). Beyond religion. New York, NY: Mariner Books.Google Scholar
  79. Tonge, B., Brereton, A., Kiomall, M., Mackinnon, A., King, N., & Rinehart, N. (2006). Effects on parental mental health of an education and skills training program for parents of young children with autism: A randomized controlled trial. Journal of the American Academy of Child and Adolescent Psychiatry, 45(5), 561–569. https://doi.org/10.1097/01.chi.0000205701.48324.26CrossRefPubMedGoogle Scholar
  80. U.S. Census Bureau. (2016). Annual estimates of the resident population by sex, age, race, and Hispanic origin for the United States and states: April 1, 2010 to July 1, 2015. U.S. Census Bureau, population Divison. Retrieved on February 13, 2017, from https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?src=bkmk
  81. U.S. Department of Health and Human Services. (2001). What is cultural competency? U.S. Department of Health and Human Services: Office of Minority Health. Retrieved on February 13, 2017 from https://www.cdc.gov/nchhstp/socialdeterminants/docs/what_is_cultural_competency.pdf
  82. Vail, S., & Xenakis, N. (2007). Empowering women with chronic, physical disabilities. Social Work in Health Care, 46(1), 67–87. https://doi.org/10.1300/J010v46n01_05CrossRefPubMedGoogle Scholar
  83. Vismara, L. A., & Rogers, S. J. (2010). Behavioral treatments in autism spectrum disorder: What do we know? Annual Review of Clinical Psychology, 6, 447–468. https://doi.org/10.1146/annurev.clinpsy.121208.131151CrossRefPubMedGoogle Scholar
  84. Volkmar, F., & Wiesner, L. A. (2009). A practical guide to autism: What every parent, family member, and teacher needs to know. Hoboken, NJ: Wiley.Google Scholar
  85. Walsh, R., & Shapiro, S. L. (2006). The meeting of meditative disciplines and western psychology: A mutually enriching dialogue. American Psychologist, 61(3), 227–239. https://doi.org/10.1037/0003-066X.61.3.227CrossRefPubMedGoogle Scholar
  86. Weitlauf, A. S., Vehorn, A. C., Taylor, J. L., & Warren, Z. E. (2014). Relationship satisfaction, parenting stress, and depression in mothers of children with autism. Autism : The International Journal of Research and Practice, 18(2), 194–198. https://doi.org/10.1177/1362361312458039CrossRefGoogle Scholar
  87. Whitney, R. V., & Smith, G. (2015). Emotional disclosure through journal writing: Telehealth intervention for maternal stress and mother–child relationships. Journal of Autism and Developmental Disorders, 45(11), 3735–3745. https://doi.org/10.1007/s10803-014-2332-2CrossRefPubMedGoogle Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Marcus Autism Center, Children’s Healthcare of AtlantaAtlantaUSA
  2. 2.Department of PediatricsEmory University School of MedicineAtlantaUSA

Personalised recommendations