**3. Families as primary interveners**

#### **3.1. Parent training**

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

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

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

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.)

"new normal" with family harmony reestablished [1].

504 Recent Advances in Autism Spectrum Disorders - Volume I

3), and improved prognosis for overall quality of life.

contribute to its development.

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 child prognosis and long-term quality of life.

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 [11]. However, there is a need to closely examine the individual parent-training intervention components thought to be linked with these core constructs to determine which components are most effective for a particular child. This would allow researchers to better identify the most convenient and efficient means of teaching these constructs and related intervention components.

had enhanced their paternal role and the quality of overall family functioning [14]. (Details

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Most children with autism have difficulty with inconsistency as evidenced by their strong adherence to routines and rituals. Therefore, it may be difficult, perhaps even impossible, for these children to effectively modify their interactions if family members are not consis‐ tent in their approach. Furthermore, incongruence within the family can distress children with autism, who may express their feelings by engaging in a variety of aberrant behaviors such as tantrums, aggression, and other behavioral expressions of frustration. Present re‐ search indicates that training non-affected, typically developing siblings, or other individu‐ als who have ongoing contact with the child with autism, could be beneficial. However, little is known about the effects of training siblings to use theoretically-derived strategies such as those Elder and others have implemented with parents. Also unknown is the effect that training typically developing siblings might have on their own behavior, anxiety, and overall quality of life. Although it seems likely that training would positively affect them,

In a search of the literature related to non-affected, typically developing (TD) siblings of children with autism, few studies are found describing these children, their relationship with their sibling with autism, or what effect having a sibling with autism has on them [15]. Of the extant reports, the findings are inconsistent, making it difficult to character‐ ize the siblings, identify those who are vulnerable to poor adjustment outcomes, or de‐ velop interventions that benefit both the sibling and the entire family [15]. It is clear, however, from both the literature and clinical experience, that TD siblings are often faced with unique challenges related to their affected sibling's autism. Also, because chil‐ dren with ADS rarely have physical disfigurement, it is often difficult for those who are not familiar with autism to understand why these children act the way they do; this, in turn, adds to the stress that TD siblings and the family experience [16-18]. Initial find‐ ings are promising because they show that when TD siblings care for their ADS siblings early in life, this can positively affect not only the child with autism but also the inter‐ vening sibling [19-22]. This clearly indicates that training and evaluating siblings is an

Another important consideration that lends support for training siblings is evidence that children with autism learn best in naturalistic environments such as their homes. In a classic work, Baer, Wolf, and Risley (1968) state that skills taught to children in one setting cannot be expected to generalize to other settings without planned, systematic implementation. In fact, these researchers assert that no deliberate behavior changes, particularly related to lan‐ guage acquisition and socialization, should be made that are not reinforced regularly in the child's primary environment; otherwise, trainers must continue to intervene to maintain the behavior change [23]. If one ascribes to this view, clinic-taught interventions cannot be ex‐ pected to generalize well to home settings unless: (a) the trainer is always present (an im‐ practical and costly idea), (b) family members are taught to assist with generalization, or (c)

of these studies can be found in published articles [7, 8]).

training effects on siblings should be addressed in clinical trials.

area of research with enormous potential and clinical relevance.

**3.3. Including siblings**

#### **3.2. Research development in parent training**

The author and co-investigators have been following a systematic sequence of research that began in the early 1980's with the development of a play-based, in-home intervention that was initially tested in-depth, over 8-12 weeks, with four mother-child dyads using intrasub‐ ject (single subject experimental) methodology [12]. In this initial study, Elder found that mothers figure prominently as recipients of training and other interventions and that even when the focus was on the dyad, mothers "took over" and fathers stayed in the "back‐ ground," with inadequate diffusion of new learning through the mothers. This lack of father involvement piqued the interest of Elder's research team, who collaborated on new studies directed at fathers. Although a systematic review of the literature revealed only three inter‐ vention studies that included fathers, evidence indicated that fathers' interaction styles dif‐ fered from mothers, possibly resulting in unique contributions to their child's social and language development [13].

Building on Lamb's (1987) seminal work related to fathers and their influence on child de‐ velopment, Elder et al. developed and tested a Father Directed In-Home Training (FDIT) in‐ tervention with a total of 36 father-child and mother-child dyads under controlled conditions in two NIH/NINR-funded studies [7, 8]. The study was designed so that data from individual training components could be analyzed rather than an entire intervention package. These training components were based on the theoretical constructs in social inter‐ action theory and characterized by the broad concept of social "turn-taking". Because the team had previously observed many fathers sitting passively or aggressively directing inter‐ actions and not allowing their child time to respond, the research team created four inter‐ vention components: (a) following the child's lead (FCL), which involved allowing the child with autism to direct play, (b) imitating/animating (I/A), which entailed attending to and imitating the ADS child's sounds and/or actions in an animated manner, (c) expectant wait‐ ing (E/W), which required signaling the child and waiting for a response, and (d) comment‐ ing on the child (CC), which emphasized remarking on the child's actions at appropriate times during play [12]. Fathers were instructed to watch videotaped examples and read written directions about integrating these components into play sessions. After mastering the skills, fathers taught mothers the same techniques using the research team's educational approach, resulting in both parents reporting that training had helped them relax during the in-home play sessions.

After the intervention, fathers significantly increased their use of the skills taught and chil‐ dren with autism responded with greatly increased initiating rates as well as frequencies of child non-speech vocalizations. In follow-up interviews, fathers revealed that the training had enhanced their paternal role and the quality of overall family functioning [14]. (Details of these studies can be found in published articles [7, 8]).

#### **3.3. Including siblings**

[11]. However, there is a need to closely examine the individual parent-training intervention components thought to be linked with these core constructs to determine which components are most effective for a particular child. This would allow researchers to better identify the most convenient and efficient means of teaching these constructs and related intervention

The author and co-investigators have been following a systematic sequence of research that began in the early 1980's with the development of a play-based, in-home intervention that was initially tested in-depth, over 8-12 weeks, with four mother-child dyads using intrasub‐ ject (single subject experimental) methodology [12]. In this initial study, Elder found that mothers figure prominently as recipients of training and other interventions and that even when the focus was on the dyad, mothers "took over" and fathers stayed in the "back‐ ground," with inadequate diffusion of new learning through the mothers. This lack of father involvement piqued the interest of Elder's research team, who collaborated on new studies directed at fathers. Although a systematic review of the literature revealed only three inter‐ vention studies that included fathers, evidence indicated that fathers' interaction styles dif‐ fered from mothers, possibly resulting in unique contributions to their child's social and

Building on Lamb's (1987) seminal work related to fathers and their influence on child de‐ velopment, Elder et al. developed and tested a Father Directed In-Home Training (FDIT) in‐ tervention with a total of 36 father-child and mother-child dyads under controlled conditions in two NIH/NINR-funded studies [7, 8]. The study was designed so that data from individual training components could be analyzed rather than an entire intervention package. These training components were based on the theoretical constructs in social inter‐ action theory and characterized by the broad concept of social "turn-taking". Because the team had previously observed many fathers sitting passively or aggressively directing inter‐ actions and not allowing their child time to respond, the research team created four inter‐ vention components: (a) following the child's lead (FCL), which involved allowing the child with autism to direct play, (b) imitating/animating (I/A), which entailed attending to and imitating the ADS child's sounds and/or actions in an animated manner, (c) expectant wait‐ ing (E/W), which required signaling the child and waiting for a response, and (d) comment‐ ing on the child (CC), which emphasized remarking on the child's actions at appropriate times during play [12]. Fathers were instructed to watch videotaped examples and read written directions about integrating these components into play sessions. After mastering the skills, fathers taught mothers the same techniques using the research team's educational approach, resulting in both parents reporting that training had helped them relax during the

After the intervention, fathers significantly increased their use of the skills taught and chil‐ dren with autism responded with greatly increased initiating rates as well as frequencies of child non-speech vocalizations. In follow-up interviews, fathers revealed that the training

components.

language development [13].

in-home play sessions.

**3.2. Research development in parent training**

506 Recent Advances in Autism Spectrum Disorders - Volume I

Most children with autism have difficulty with inconsistency as evidenced by their strong adherence to routines and rituals. Therefore, it may be difficult, perhaps even impossible, for these children to effectively modify their interactions if family members are not consis‐ tent in their approach. Furthermore, incongruence within the family can distress children with autism, who may express their feelings by engaging in a variety of aberrant behaviors such as tantrums, aggression, and other behavioral expressions of frustration. Present re‐ search indicates that training non-affected, typically developing siblings, or other individu‐ als who have ongoing contact with the child with autism, could be beneficial. However, little is known about the effects of training siblings to use theoretically-derived strategies such as those Elder and others have implemented with parents. Also unknown is the effect that training typically developing siblings might have on their own behavior, anxiety, and overall quality of life. Although it seems likely that training would positively affect them, training effects on siblings should be addressed in clinical trials.

In a search of the literature related to non-affected, typically developing (TD) siblings of children with autism, few studies are found describing these children, their relationship with their sibling with autism, or what effect having a sibling with autism has on them [15]. Of the extant reports, the findings are inconsistent, making it difficult to character‐ ize the siblings, identify those who are vulnerable to poor adjustment outcomes, or de‐ velop interventions that benefit both the sibling and the entire family [15]. It is clear, however, from both the literature and clinical experience, that TD siblings are often faced with unique challenges related to their affected sibling's autism. Also, because chil‐ dren with ADS rarely have physical disfigurement, it is often difficult for those who are not familiar with autism to understand why these children act the way they do; this, in turn, adds to the stress that TD siblings and the family experience [16-18]. Initial find‐ ings are promising because they show that when TD siblings care for their ADS siblings early in life, this can positively affect not only the child with autism but also the inter‐ vening sibling [19-22]. This clearly indicates that training and evaluating siblings is an area of research with enormous potential and clinical relevance.

Another important consideration that lends support for training siblings is evidence that children with autism learn best in naturalistic environments such as their homes. In a classic work, Baer, Wolf, and Risley (1968) state that skills taught to children in one setting cannot be expected to generalize to other settings without planned, systematic implementation. In fact, these researchers assert that no deliberate behavior changes, particularly related to lan‐ guage acquisition and socialization, should be made that are not reinforced regularly in the child's primary environment; otherwise, trainers must continue to intervene to maintain the behavior change [23]. If one ascribes to this view, clinic-taught interventions cannot be ex‐ pected to generalize well to home settings unless: (a) the trainer is always present (an im‐ practical and costly idea), (b) family members are taught to assist with generalization, or (c) ideally, intervening family members and children with autism are trained in familiar home environments where naturally reinforcing (caregiving) activities are more likely to occur. Al‐ so, children with autism are more likely to exhibit abnormal language in unfamiliar settings than at home [11]. For these reasons, it is important that AD children acquire communica‐ tion skills in naturalistic settings where they are most likely to encounter interactions and opportunities to utilize communication skills that are similar to the contexts of their daily routines [11].

higher stress levels than fathers [31, 37-40]. However, in two other studies comparing moth‐ ers' and fathers' stress levels, no differences were found [32, 41]. The author and team also found that both mothers and fathers scored very high, over the 90th percentile on the Parent‐ ing Stress Index pre-intervention with no statistical significance between the mothers' and

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In 2008, Davis and Carter provided more insight regarding how mothers and fathers may react to their child's autism. They noted that although mothers had a higher rate of stress and depression, fathers reported more difficulty interacting with the children. In addition, mothers were more involved with everyday activities and thus, more often affected by their child's inability to perform activities of daily living and self-regulate emotions. In contrast, fathers reacted more to overt behaviors such as tantrums, aggression, and/or loud/peculiar vocalizations, which are particularly difficult to manage and can be embarrassing in public settings. Because the core disability associated with autism is social, it can be stressful for parents to deal with a child who may not like to be held, will not respond to their affection,

Although only a few studies have explored effects of child intervention on changes in paren‐ tal stress levels, [14, 28, 42, 43] results are promising. Parent involvement that results in im‐ proved child outcomes can empower parents and lower stress in both mothers and fathers. Also, it is important to consider that although fathers may not appear to be as overtly stressed as mothers, there is evidence that they also experience high levels of stress; there‐ fore, interventions should include both mothers and fathers. Finally, although little is known about stress in siblings, it is likely that their stress is also high and that they could

A report from the American Academy of Pediatrics' Council on Children with Disabilities states that treatment goals for children with autism are to: (a) maximize the child's ultimate functional independence and quality of life by minimizing the core features, (b) facilitate de‐ velopment and learning, (c) promote socialization, (d) reduce maladaptive behaviors, and (e) educate and support families [44]. While standard treatments meet these goals and thus, are generally accepted by the autism research community, the variety of novel approaches are less accepted due to their lack of empirical support. As a result, families, who often be‐ come desperate to identify a ready cure for the disorder, must be equipped with the knowl‐

edge to avoid scams by fully evaluating the potential of new therapeutic approaches.

While it is not possible to cover the multitude of novel and complementary treatments for autism, the author will provide a critical review of some of the most popular strat‐ egies, ferreting out those that are empirically validated from those that are unsubstantiat‐ ed. This section will include a discussion of findings from the author's previously

**6. Alternative and complementary therapies: Helping families**

fathers' scores [14].

or even make eye contact.

benefit from being included in an intervention.

**6.1. Select credible treatment options**
