**2. Common reactions and beliefs held by family members**

Families are faced with enormous challenges in caring for children with autism over a life‐ time. The first challenge is obtaining the initial diagnosis, which can be difficult despite the fact that autism is better understood today than it was in the past. Indeed, it is common for families to consult a variety of professionals such as pediatricians and primary health care providers before receiving a conclusive diagnosis. Once the diagnosis is made, however, pa‐ rents face a second, far greater challenge: mourning the loss of their "perfect child"—which can be a long and arduous process that involves coming to terms with the fact that their child, whose physical appearance is normal or even unusually attractive, has a complex, in‐ curable, and frequently debilitating condition. After the family advances through stages of

© 2013 Elder; licensee InTech. This is an open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. © 2013 The Author(s). Licensee InTech. This chapter is distributed under the terms of the Creative Commons Attribution License http://creativecommons.org/licenses/by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

grieving that can be characterized using Elizabeth Kübler-Ross's five stages of grief—Denial, Anger, Bargaining, Depression, and Acceptance (DABDA)—they eventually arrive at a "new normal" with family harmony reestablished [1].

The fourth stage, "depression", can take many forms. Parents may at times feel over‐ whelmed and powerless in their ability to facilitate their child's development or ameliorate difficult, disruptive behaviors such as severe tantrums or self-abuse. Indeed, negative be‐ haviors may intensify to such a degree that families curtail their usual plans or avoid a de‐ sired activity all together, leading to feelings of hopelessness that is expressed in statements such as, "I can't do anything right" or "why bother". In addition, because many children with autism have sleep disturbances (e.g., difficulty falling asleep; waking up and becoming active in the middle of the night), parents must be vigilant at night, causing exhaustion and sometimes even deeper depression. At this point, it is important for caregivers to recognize that they may need professional help such as counseling or prescribed medications in order

Empowering Families in the Treatment of Autism

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Many families who advance to acceptance, the final stage, describe having gained spiritual strength, which helped them maintain "hope"—an essential ingredient to successful griev‐ ing. In this stage, families recognize that there is no instant cure for their child's autism, but there are credible interventions that can help. Ultimately, families discover that they can be powerful advocates for their children, and after receiving proper education, can implement home interventions that positively affect the family unit and even improve their child's con‐ dition. Once they gain confidence in these new approaches, they can serve other families struggling through the grieving process by contributing empathy and wisdom to local fami‐ ly support group meetings. Because grieving is rarely a linear process, these meetings can also help families as they revisit earlier stages by limiting the time they spend in previous

Historically, development of more family-focused interventions has resulted in a shift from didactic teaching and family therapy models to interactive approaches, in which parents are active participants in all levels of the training process [2, 3]. Although parents were once viewed as the cause of their child's problems [4-6], they are now recognized for the key roles they can play in ongoing child training and skill generalization [7-9], which has led to better

Because there are now clearer linkages between core constructs such as *social reciprocity* (e.g. social turn-taking), *joint attention* (e.g. sharing interest in, and mutually commenting on, an object), and language acquisition, developing these skills can improve a child's communica‐ tive capacity. In fact, researchers stress that teaching parents to target pivotal skills such as joint attention may produce positive, sustained effects on social and language development [10]. Similarly, evidence suggests that interventions that require parents to synchronize with the child's attentional focus (i.e. become interested in what the child is interested in) may be more effective than parent-directed approaches (e.g., instructing the child to play with a toy in a certain way) for children who have difficulty responding to, or initiating, joint attention

to optimally provide for their child and family.

ones, thus facilitating a more permanent acceptance.

**3. Families as primary interveners**

child prognosis and long-term quality of life.

**3.1. Parent training**

The first stage of grieving, denial, is common in parents of children with autism, and can persist even after a child receives a diagnosis. Because fathers are typically less in‐ volved in day-to-day care than mothers, they may experience denial more intensely due to fewer opportunities to observe the symptoms. For example, a father may be more likely to say, "he doesn't have autism; he's just quiet," which is supported by stories of other family members who were also "late to develop" yet still "turned out fine". How‐ ever, as the symptoms of autism become more conspicuous, caregivers notice differences between their child and other, typically developing children whom they encounter in playgrounds, preschools, and family gatherings. Frequently, it is extended family mem‐ bers who identify the autistic symptoms, share their concerns with the primary caregiv‐ ers and try to convince the caretakers to seek further assessment and follow up as needed. This action is critical to accurate and timely diagnosis, early intervention (< age 3), and improved prognosis for overall quality of life.

The next stage, "anger", may result in family members asking "Why us?" or "Why did this have to happen to him?" During this time, family tension is high and anger may also be ex‐ pressed toward intervening professionals, especially if there has been a prior lack of, or slow responsiveness to, parental concerns. For example, one parent stated, "That pediatrician should have listened to me when I expressed concern about David not speaking at four years old; instead, he told me not to worry about it." This failure to identify the signs sooner can lead to destructive self-blame, resulting in self-talk such as, "If only I had recognized the signs sooner" or "I knew we should have sought other opinions"—comments that may be responded to with active listening (e.g. "You sound as though you are experiencing a lot of regret") and nonjudgmental advice (e.g. "Many parents struggle at this time. What is impor‐ tant is that you are seeking the necessary assistance now.") In addition to self-blame related to behavior, it is also common in this stage for parents to evaluate their genealogy to deter‐ mine who was genetically responsible for the disorder. Unfortunately, there is no conclusive genetic test for autism and while genetics likely plays a role, environmental factors may also contribute to its development.

The third stage, "bargaining", can place families at great risk because it involves frantically seeking ways to reverse the diagnosis even if those ways are implausible. For example, it is common for parents to directly bargain with a higher power (e.g. "If you cure my child, I will be a better parent") or indirectly, with a lesser power such as the health care profession (e.g. If I find the "right" doctor or medication, my child will be cured). As they desperately seek a "magic bullet", parents may interrogate health care providers about the most useful medications despite the fact that no single medication is effective for all symptoms. In addi‐ tion, parents may surf the Internet and read testimonials regarding treatments that are not empirically sound; consequently, well-informed professionals need to advise families against these treatments as some are risky and can lead to financial burden. (The most com‐ mon treatment approaches will be described later in this chapter.)

The fourth stage, "depression", can take many forms. Parents may at times feel over‐ whelmed and powerless in their ability to facilitate their child's development or ameliorate difficult, disruptive behaviors such as severe tantrums or self-abuse. Indeed, negative be‐ haviors may intensify to such a degree that families curtail their usual plans or avoid a de‐ sired activity all together, leading to feelings of hopelessness that is expressed in statements such as, "I can't do anything right" or "why bother". In addition, because many children with autism have sleep disturbances (e.g., difficulty falling asleep; waking up and becoming active in the middle of the night), parents must be vigilant at night, causing exhaustion and sometimes even deeper depression. At this point, it is important for caregivers to recognize that they may need professional help such as counseling or prescribed medications in order to optimally provide for their child and family.

Many families who advance to acceptance, the final stage, describe having gained spiritual strength, which helped them maintain "hope"—an essential ingredient to successful griev‐ ing. In this stage, families recognize that there is no instant cure for their child's autism, but there are credible interventions that can help. Ultimately, families discover that they can be powerful advocates for their children, and after receiving proper education, can implement home interventions that positively affect the family unit and even improve their child's con‐ dition. Once they gain confidence in these new approaches, they can serve other families struggling through the grieving process by contributing empathy and wisdom to local fami‐ ly support group meetings. Because grieving is rarely a linear process, these meetings can also help families as they revisit earlier stages by limiting the time they spend in previous ones, thus facilitating a more permanent acceptance.
