Sam Goldstein and Jack A Naglieri (eds.)Interventions for Autism Spectrum Disorders2013Translating Science into Practice10.1007/978-1-4614-5301-7_16© Springer Science+Business Media New York 2013
16. Changing the Mindset of Children and Adolescents with Autism Spectrum Disorders
(1)
Department of Psychiatry, Harvard Medical School, 60 Oak Knoll Terrace, MA 02492 Needham, USA,
(2)
Neurology, Learning and Behavior Center, University of Utah School of Medicine, 230 South 500 East, Suite 100, UT 84102 Salt Lake City, USA,
Abstract
In our therapeutic work with children and adolescents with autism spectrum disorders (ASD), a major goal is to change the negative, self-defeating mindset that directs their lives. The concept of mindsets has become an increasingly prominent area of study, especially with the emergence of the field of “positive psychology.” As examples, Carol Dweck authored a book titled Mindset (2006) in which she distinguished between a “fixed” and a “growth” outlook; the research and writings of Martin Seligman and his colleagues about “learned helplessness” and “learned optimism” as well as resilience (Reivich and Shatte, The resilience factor: 7 keys to finding your inner strength and overcoming life’s hurdles, 2002; Seligman, Learned optimism: How to change your mind and your life, 1990) have roots in attribution theory, which is basically a theory about mindsets, examining how we understand the reasons for our successes and setbacks (Weiner, Achievement motivation and attribution theory, 1974).
In our therapeutic work with children and adolescents with autism spectrum disorders (ASD), a major goal is to change the negative, self-defeating mindset that directs their lives. The concept of mindsets has become an increasingly prominent area of study, especially with the emergence of the field of “positive psychology.” As examples, Carol Dweck authored a book titled Mindset (2006) in which she distinguished between a “fixed” and a “growth” outlook; the research and writings of Martin Seligman and his colleagues about “learned helplessness” and “learned optimism” as well as resilience (Reivich and Shatte 2002; Seligman 1990) have roots in attribution theory, which is basically a theory about mindsets, examining how we understand the reasons for our successes and setbacks (Weiner 1974).
A major focus of our collaboration has been to elaborate upon the concepts of both mindsets and resilience (Brooks and Goldstein 2001, 2004, 2007, 2012; Goldstein and Brooks 2005, 2007). We proposed that all people possess a set of assumptions about themselves and others that influence their behaviors and the skills they develop. In turn, these behaviors and skills impact on their assumptions so that a dynamic process is constantly operating. We labeled this set of assumptions a mindset and sought to identify the features of the mindset possessed by hopeful, resilient people, including:
Feeling in control of one’s life.
Being empathic and displaying effective communication and other interpersonal skills.
Possessing solid problem-solving and decision-making skills.
Establishing realistic goals and expectations.
Learning from both success and failure.
Being a compassionate and contributing member of society.
Living a responsible, self-disciplined life.
Our interest in resilience slowly emerged in our clinical work. Similar to other therapists trained in the 1960s and 1970s, we came to believe that too much time and effort were expended on approaches that focused on fixing deficits rather than building on assets. A deficit model may serve to identify how and why some children are developmentally behind their peers in different domains of functioning and may even prescribe particular interventions for addressing these problems. However, we concluded that if we were to improve the future of children, we must direct our attention toward identifying and harnessing their strengths.
The shortcomings of a deficit model, especially when working with or raising children with ASD, reside in the multifaceted problems these children display. If clinicians and other caregivers spend most of their time in a reactive mode, constantly and frenetically moving from one problem to the next, it is difficult to have an opportunity to reflect upon and adopt a proactive approach that asks, “What are the strengths and interests that this child possesses, strengths that can be nurtured to bring this child a realistic sense of accomplishment and dignity?”
It has been well-documented that children with ASD require much more assistance than other youngsters if they are to transit successfully into adult life (Adams 2009; Atwood 2008; Bondy and Frost 2008; Grandin and Sullivan 2008; Janzen 2009; Robinson 2011; Shumaker 2008; Sicile-Kira and Sicile-Kira 2012; Siegel 2007). Symptom relief though essential is not the equivalent of changing long-term outcome. This is not to suggest that symptom-relieving medication, therapies, or educational interventions in and of themselves cannot assist youngsters with ASD to transit into adult life. However, if our goal is to raise children with ASD to be resilient, we must not only provide symptom relief, but also experiences that develop those skills that will help them to negotiate the many challenges that will appear in their life’s journey.
A Social Resilient Mindset
In our work with children with ASD, we expanded upon our earlier writings about a resilient mindset, especially given the specific challenges that these youngsters face. Social impairments have been found to be the strongest predictors of the risk of a child receiving a diagnosis of ASD (Brooks and Goldstein 2012). Children with ASD struggle to develop normal, satisfying, and appropriate social connections and relations with others. They often do not understand how to initiate interactions. They have noticeable difficulty in developing appropriate play skills, in modulating facial and emotional responses, and in responding effectively to social cues. They can be self-absorbed, shutting off interactions with peers and adults alike. Many display odd interests and routines, often demonstrating rigid, obsessive–compulsive behaviors that isolate them even further from meaningful relationships.
Children with ASD typically lag in social language or pragmatics, so that a give and take discourse with others is difficult to achieve. They misread social cues, failing, for example, to comprehend the messages and jokes of others while being far off the mark with their own attempts to communicate. They may appear disinterested in interacting with others, preferring instead to interact with objects. Their dilemma is twofold. Not only do they fail to begin to develop the skills and abilities necessary for functional and satisfying social relations and connections, but along the way they fail to have experiences and opportunities to develop what we refer to as a social resilient mindset. Our expansion of the concept of resilient mindset to social resilient mindset with youngsters with ASD is to capture the key developmental problems they experience in the social domain.
Collaboration Among Professionals and Parents
We believe that therapists who work with children with ASD will be most effective if: (a) they collaborate closely with the child’s parents, teachers, and other professionals involved in the child’s care to insure a comprehensive treatment program and (b) their interventions and consultations are guided by a strength-based model that views the nurturing of a social resilient mindset as a central goal.
Ongoing collaboration among professionals and parents should be the norm for all clinicians who work with children and adolescents, but assumes even greater urgency when youngsters face the multitude of developmental issues housed within an ASD diagnosis. If all the significant adults in the lives of children with ASD possess an understanding of the child’s functioning and the characteristics of a social resilient mindset, then any interactions with the child can be directed toward developing this mindset.
A Strength-Based Approach
Therapists are in an excellent position to convey information about and implementation of a strength-based approach. To do so, the therapist must articulate guideposts for raising a social resilient child with ASD. Prior to our identifying eight key guideposts, we wish to emphasize that there is neither one “fixed set” of operating guidelines nor one direct course to follow in treating, educating, or raising children with ASD. Children with a diagnosis of ASD not only share some common features with each other, but they also share many characteristics with children who do not display developmental lags. Each youngster with ASD should be seen as possessing unique strengths and vulnerabilities.
Guideposts for Nurturing a Social Resilient Mindset
Though each child’s journey in life is shaped by a variety of factors, including inborn temperament, family style and values, educational experiences, and the broader society or culture in which the child is raised, the eight guideposts we have selected provide principles and strategies for nurturing a social resilient mindset in children with ASD. Each of the guideposts involves reinforcing skills necessary for the development and maintenance of friendships, a difficult task for children with ASD. They can be reinforced by parents, therapists, teachers, and other professionals.
Guidepost 1: Teaching and Conveying Empathy
A basic foundation of any relationship, parent–child, teacher–child, therapist–child, child–child, is empathy. Empathy is the capacity to put oneself inside the shoes of other people and to see the world through their eyes. Empathy of adults toward children is influenced by a number of factors. It is easier to be empathic when children do as we ask and when they are warm and responsive in their interactions with us. It is more challenging to be empathic when we are angry, exasperated, or disappointed with a child’s actions. It is important to note that when parents and other caregivers are confused and do not understand the reasons for a child’s particular behaviors or problems, a situation that often transpires with children with ASD, maintaining an empathic view may be difficult.
The struggle for adults to be empathic, especially toward children with ASD, is paralleled by the difficulties that these children have in being empathic. Empathy involves both cognitive (e.g., taking the perspective of another person) and affective skills (e.g., identifying and understanding different emotions), skills that typically lag in children with ASD. Thus, it is important for parents to model and teach these skills to their children.
Questions to Promote Empathy
In our clinical work, we attempt to promote empathy in parents and professionals alike by posing the following questions (Brooks and Goldstein 2001):
How would I hope my child (student, patient) describe me?
What have I said or done that is likely to lead my child (student, patient) to describe me as I hope he or she would?
How would my child (student, patient) actually describe and how close is that to how I hope he or she would describe me?
When I talk or do things with my children (students, patients), am I behaving in a way that will make them most responsive to listening to me?
Would I want anyone to speak to me the way I am speaking to my child (student, patient)?
When we pose these questions, we remind adults that children with ASD typically have difficulty “reading” the verbal and nonverbal messages of others. Thus, if children misperceive what we are attempting to communicate, we must do our best not to become annoyed or to disagree angrily with their perceptions, but instead consider how we can assist them to become more accurate in terms of their perceptions.
Richard, a 9-year-old with ASD, exemplified the gains that can be achieved when parents focus on reinforcing empathy. Richard failed to understand the ways in which his behaviors impacted on others, including their becoming upset or frustrated with him. In an effort to help Richard, his parents began a “family empathy project.” They started with simple activities such as discussing the feelings of some of Richard’s favorite cartoon characters after joining him to watch those programs. Then, as Christmas approached, they “adopted” a family with limited resources. During the course of shopping for gifts, they spoke with Richard about how the children in that family would feel not receiving much for Christmas and how they would now feel receiving gifts because of his actions. Though Richard struggled with this concept, he slowly began to improve his ability to identify the thoughts and feelings of others and the ways in which his behaviors triggered different feelings and reactions in others.
Laurie, also a 9-year-old with ASD, was described by her mother as obsessed with movie stars. Her mother observed that while Laurie does not like to read, she constantly looks at movie magazines from cover to cover. Laurie’s parents used what they termed her “obsession” as a vehicle through which to help her develop empathy and improve her social skills. Since Laurie did not want to cut photos from the magazine, they made copies of the photos of the faces of different Hollywood stars and pasted them on index-sized cards. They designed a game that involved taking turns picking a card and then creating a brief story about what caused the stars to feel the way they looked in the photos.
Laurie’s parents noticed that occasionally Laurie’s story was discrepant from the photo (e.g., a star who was obviously angry was described by Laurie as happy). They used this discrepancy as an opportunity to teach Laurie about facial expressions and feelings. Laurie invited her two sisters to participate. Given Laurie’s continued interest in the game, her parents added another dimension suggesting that each player had to say not only what events led a star to feel a certain way, but also to describe a time the player felt the same way. Although Laurie’s answers could be repetitive (e.g., offering the same reason someone would feel happy), her parents varied their responses as a way of teaching Laurie about experiences that elicited different emotions.
Parental Assumptions to Enhance and Maintain Empathy
There are assumptions that therapists can identify for parents and other adults to help them to be more empathic with children on the autism spectrum. Three of the assumptions that we highlight in our clinical work include:
Knowledge is power: This is an often-stated phrase and deservedly so. It is imperative that parents of children with ASD understand what this diagnosis entails in terms of all dimensions of their child’s development and functioning. It is equally important for parents to recognize a point we noted earlier, namely, children with ASD are not a homogeneous group and while the diagnosis can provide some common parameters, each child with ASD will differ. Such knowledge will provide parents with a more accurate portrait of their child, a portrait that will allow for more realistic, effective strategies. We advocate that parents as well as professionals keep as informed as possible with the burgeoning amount of information that is available about ASD. Of course, it is vital that parents become wise consumers of this information, separating spurious claims from scientifically based studies and interventions.
Your child has little control over thoughts or behaviors associated with ASD: Many parents of children with ASD, especially if their children are on the higher functioning side of the spectrum, may entertain the belief that their children could control their behavior if they “only wanted to do so.” Some parents have told us that while they know their child has been diagnosed with ASD, they still wonder if their child could change if he or she were more motivated to do so. They view their child as lacking in “will” rather than in “skill.” As Greene (1998, 2009) has emphasized in his work with challenging youngsters, such a view may contribute to adopting a more punitive approach that only serves to exacerbate the child’s problems and weaken the parent–child and/or teacher–child relationship.
When we ask parents and teachers to consider the ways in which their response to their child or student would change if they shifted their perspective from will to skill, we have been impressed with the lessening of anger and the increase in empathy that ensues. As one parent of a child with ASD said, “Why punish a child for lacking a skill? When children are not able to do something, it’s better to figure out how to teach them rather than how to punish them.”
Another parent wondered at a workshop, “But what if the child has the skill but just isn’t using it?” We replied, “If kids aren’t using skills they have, there are obviously obstacles in the way. The obstacles may vary. Some kids may believe they can’t do the task. Others may worry that they will fail and people will ridicule them. Regardless of the reasons for children backing away from a task, the best approach is to patiently teach these children the skills involved in the task. This will be more effective in addressing the obstacles than exhorting a child, ‘You could do it if you wanted to do it!’”
Strive to become “stress hardy” instead of stressed out: The more stress and frustration we experience as parents and caregivers, the less likely we are to adopt an empathic stance toward our children. It is for this reason that we have been devoting an increasing amount of time in our clinical practices and workshops to highlight the work of psychologist Suzanne Kobasa and her colleagues (Kobasa et al. 1982; Kobasa and Puccetti 1983). Kobasa has described a stress-hardy personality, or what we prefer to call a stress-hardy mindset.
Kobasa identified the characteristics or mindset of individuals who deal effectively with stress and pressure. The mindset comprises three interrelated components: commitment, challenge, and control. Commitment is defined as being involved with, rather than alienated from, many aspects of life. When commitment is present, we possess a sense of purpose that provides us with a reason for why we are doing and what we are doing. This meaning is not confined to a single area, but is manifested in our personal relationships, our work, our charitable activities, and the causes we adopt. It is little wonder that parents of children with ASD report a feeling of gratification when they are involved in helping others through support groups or autism-related organizations.
The second feature, challenge, captures the belief that difficult situations are opportunities for learning and growth rather than reasons for despair and helplessness. People are less stressed when they have the ability to think outside the box, to consider new ways of solving problems. This is an especially important perspective when parenting or working with a child on the autism spectrum.
The third component is control or what we have titled personal control. Kobasa found that people are less stressed when they devote their time and energy to manage those situations over which they have some control or influence. A lack of personal control is associated with stress and a lessening of empathy. Personal control is evident when parents of a child with ASD can take the step of moving from a “Why me?” or “Why my child?” perspective to recognizing that while they had no control over their child having ASD, what they do have control over is their attitude and the services they can obtain to facilitate their child’s development.
Famed football player Doug Flutie and his wife Laurie, noted in an interview that when they first learned that their son Dougie was autistic, they asked “why us?” but quickly realized that such an attitude was of little use. Instead, they applied all three features of a stress-hardy mindset. They focused on what they had control over, leading them not only to obtain services for their son, but also to establish a foundation in his name to assist other families with children with ASD, an activity that enriched a sense of purpose to their lives (Brooks and Goldstein 2012).
The stronger a stress-hardy outlook, the better-equipped parents and professionals are to be empathic with children with ASD and to help these children become more empathic themselves.
Guidepost 2: Using Empathic Communication and Listening Effectively
This is closely related to the first guidepost, but focuses specifically on communication. Effective communication has many features. It is not just speaking to another person with clarity. It also involves actively listening to others and understanding and validating what they are attempting to say.
Resilient children develop a capacity to communicate effectively, aided by parents capable of serving as important models in this process. The art of effective communication has significant implications for many components of behaviors associated with resilience including interpersonal skills, empathy, and problem-solving and decision-making abilities. Mastering these skills presents a challenge for children with ASD. They have difficulty in experiencing empathy, understanding or “reading” verbal and nonverbal messages, sharing their interests and experiences, and displaying flexibility in a back-and-forth conversation.
Given all the obstacles that exist when communicating with children with ASD, it is important to practice empathy in every interaction we have with them. We can use our empathic communications with them to model empathy, hope, problem-solving and coping skills, and a sense of control or ownership over one’s life. Empathic parents and professionals are guided by the following kinds of questions, which are related to the questions outlined in Guidepost 1. These are the questions we ask parents of children with ASD to consider in our parent counseling sessions. The questions are just as relevant for teachers and for other professionals working with children with ASD.
Questions to Promote Empathic Communication
Whenever I say or do things with my child, what is my goal, what is it that I hope to achieve?
Am I doing or saying things in a way that will lead my child to be more responsive to listening to me?
Would I want anyone to speak with me in the way I am speaking with my child?
When I communicate with my child with ASD, do I take into consideration his or her unique way of understanding and responding to my message in order to lessen a disconnect between us?
Even when I disagree with my child’s point of view, do I validate my child’s perspective, remembering that validation does not infer agreement, but rather reinforces that I have heard and am attempting to understand my child’s message?
Although children with ASD perceive the world differently than we do and are not as skilled in social pragmatics and interpreting the feelings and thoughts being expressed by others, parents have found a couple of additional questions beneficial in strengthening effective communication. They are:
What makes it easiest for me to listen to what others have to say without becoming defensive?
What do others say and do that turns me off and keeps me from truly listening to their messages?
Stephen and Amanda, the parents of Grant, a 12-year-old boy diagnosed with Asperger’s, found these questions very helpful in their communications with their son. Grant frequently blurted things out to strangers without thinking about the impact his words had on others. On one occasion, he saw a woman smoking in the parking lot of a mall and in a loud voice he informed her that she had a “bad habit and could die soon if she didn’t stop smoking.” Similarly, he told a man inside a store in the mall that he was “fat and fat people are not healthy.”
Stephen and Amanda attempted to teach Grant not to say these things, but Grant responded that what he said is true and he was just trying to help people. His inflexibility triggered frustration in his parents that led to comments often accompanied with an angry tone such as: “You have to learn to listen to us,” “You aren’t helping people, you’re hurting their feelings,” “Why can’t you remember what we tell you?”

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