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Chapter 1
INTRODUCTION
Purpose of the Project
The purpose of this project is to develop and launch a website designed to provide
important information that is not easily accessible to families of children living with
autism. The website focuses on information about current research on common
challenges that children with autism face, including deficits in social adaptation,
emotional regulation, behavioral regulation, and other common symptoms related to these
primary areas. The website also provides information on interventions - specifically
behavioral therapy, occupational therapy, speech and language therapy, music therapy,
and animal therapy - that may be effective in treating autism, and provides a review of
the current research on each of these therapeutic techniques. Additionally, the website
provides parents with the ability to connect with social networking groups, gain access to
services, and learn how to acquire services in the greater Sacramento area.
Statement of the Problem
Autism Spectrum Disorder (ASD) is a complex neuro-developmental disorder that
severely compromises functioning in multiple developmental domains (Rogers et al.,
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2006). ASD is characterized by deficits in social relatedness and reciprocity (Hurth,
Shaw, Izeman, Whaley, & Rogers, 1999), nonverbal and verbal communication,
cognitive and adaptive functioning (Kasari, Paparella, Freeman, & Jahromi, 2008; Patel
& Curtis, 2007; Rogers et al., 2006;) and is often characterized by behavioral problems
(Hurth et al., 1999; Kasari et al., 2008; Patel & Curtis, 2007; Rogers et al., 2006).
Children with ASD often show deficits in the social domain including problems in selfadvocacy, communication skills, using others to satisfy needs, ability to initiate and
engage in conversations, understanding the emotions and reactions of others, and
initiating and maintaining social relationships (Webster, Feiler, & Webster, 2003). Many
children with ASD lack signs of emotion regulation, a key component of social
competence.
Interventions may be beneficial for individuals with autism spectrum disorder,
including behavioral therapy, occupational therapy, speech therapy, music therapy, and
animal therapy. ASD is a multidimensional disorder, thus in most cases a single
intervention is not sufficient for effective treatment. Yet, according to Thomas,
Morrissey, and McLaurin (2007), parents’ knowledge and use of services are
underdeveloped and thus parents may not have the information necessary to provide an
optimal treatment plan for their children.
There are a variety of sources available with information for families who have
children with ASD. However, the information is not easily comprehensible for all
populations. The presentation of the information is typically not sequential, does not
focus on all pertinent areas (e.g., deficits of autism, services available, how to obtain
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services, descriptions of research), and does not use language that is comprehendible to
the general population. This project was therefore designed to provide families who have
children with autism with a simple but informative web-based source of empirically
grounded information about ASD, treatment options, and local resources for treatment
and evaluation.
Significance of the Project
Families of children who have recently been diagnosed with autism typically
report feeling overwhelmed and isolated (Hastings et al., 2005). These individuals often
do not have easily accessible or understandable resources to assist them in understanding
and adjusting to the new lifestyle for a family with a child with ASD. The current
website project aims to provide families with easily accessible and understandable
information for all populations.
Definition of Terms
The current project provides parents with pertinent information in relation to three
critical developmental components: Emotion Regulation, Behavior Regulation, and
Social Competence. In the current project, emotion regulation is conceptualized as the
capacity to adapt one’s emotional arousal, whether the emotion is negative, such as anger,
or positive, such as excitement (Batum, & Yagmurlu, 2007). “Behavior regulation is
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defined as the process of initiating, maintaining, inhibiting, modulating, or changing the
occurrence, form, and duration, of behavioral concomitants of emotion, including
observable facial or gestural responses and other behaviors that stem from, or are
associated with, internal emotion-related psychological or physiological internal states
and goals” (Eisenberg et al., 2000, p.1367). Both emotion regulation and behavior
regulation are important components of social competence that have received increasing
attention in developmental research (Eisenberg et al., 2001). Well-regulated individuals
are neither over- nor under-controlled. They have the capability to respond to continuing
demands of experience with a variety of responses that are socially acceptable (Eisenberg
et al., 2001). Such regulation is generally viewed as adaptive and is a critical component
for parents to promote in order to facilitate their children’s adaptation to social settings.
In the current study, social competence is defined as “the condition of possessing
the social, emotional, and intellectual skills and behaviors needed to succeed as a member
of society” (Encyclopedia of Children’s Health.com, 2006). Socially competent
individuals display the ability to regulate themselves behaviorally and emotionally in
social situations. Additionally, these individuals are adequately flexible to allow for
spontaneity.
Method
The researchers consulted several sources in order to develop the website. First,
the authors consulted scholarly literature on ASD, and ASD treatment options and
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effectiveness. Next, a needs assessment with families of children with ASD was
conducted to reveal gaps in parents’ knowledge. Finally, the authors conducted a
thorough search of existing web-based information for families, as well as a web-based
search of local (northern California) agencies and services for children and families.
The research gathered from scholarly review, needs assessment, and local agency
search was placed on an informational web site using Serif Webplus X2
(http://www.serif.com/webplus/), which was then posted to the web using
freewebpoastingarea.com for viewing at http://autismliving.freeoda.com. After the web
site was posted, five parents of children with ASD viewed the site and evaluated the site’s
usefulness by completing a survey.
.
Limitations
Although the current website project aims to be widely distributed, the sample
size for the needs assessment and the web site evaluation was limited. Additionally, the
researchers had limited hyper text markup language (HTML) knowledge, limiting the
number of display features that could be employed to attract parents to the site.
Organization of the Project
In Chapter 2, the reader will find a literature review covering general information
and deficits about ASD; primary regulation skills of children with autism; the main
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deficits of children with ASD in the domain of social competence; and a description of
five therapeutic interventions typically associated with addressing regulatory and social
deficits of children with ASD, along with research evaluating the effectiveness of these
interventions. Chapter 3 describes the method used in the development and evaluation of
the website project. Finally, Chapter 4 presents a discussion and evaluation of the
website, and recommendations for improving and disseminating the website.
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Chapter 2
REVIEW OF LITERATURE
Autism Spectrum Disorder (ASD) is a complex neuro-developmental disorder
that has the potential to severely compromise functioning in multiple developmental
domains (Rogers et al., 2006). ASD presents in individuals as a spectrum of
psychological/developmental conditions that compromise the ability to develop social
relationships (Hurth, 1999). The current project focuses on disseminating information on
emotion regulation, behavior regulation, and social competence in children with ASD, as
well as information about therapeutic interventions associated with promoting the
development of emotion regulation, behavior regulation, and social competence in
children with ASD. In addition, the website presents information about the ASD social
networking groups and information about how to acquire services in the Greater
Sacramento Area.
This chapter presents a review of literature, including a discussion of social
competence and emotion and behavior regulation in children with ASD. Also discussed
are the multiple components of ASD, the different therapies developed to improve
functioning for children with ASD (i.e., behavioral therapy, speech therapy, occupational
therapy, music therapy, animal therapy), and how these relate to improvements in social
competence and emotion and behavior regulation. Further, this chapter addresses issues
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related to the benefits of therapies and access to services. The literature reviewed here is
reflected in the material presented on the ASD website.
Autism
ASD is a complex neuro-developmental disorder with onset before 3 years of age
that severely compromises functioning in multiple developmental domains (Rogers, et
al., 2006). The compromised domains may include social relatedness (Hurth, 1999) and
reciprocity, nonverbal and verbal communication, cognitive and adaptive functioning
(Kasari, Paparella, Freeman, & Jahromi, 2008; Patel, & Curtis, 2007; Rogers et al.,
2006), and behavioral problems (Hurth, 1999; Kasari et al., 2008; Patel & Curtis, 2007;
Rogers et al., 2006). ASD is classified as an umbrella diagnosis that encompasses the
diagnoses of: Autism, Asperger’s, Rett Syndrome, Childhood Degenerative Disorder, and
Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) (Magana &
Smith, 2006). All of the diagnoses have slight differences in the ways that delays are
manifested. For example, individuals with Asperger’s disorder are commonly found to
have difficulty attaining social success, even if they possess age appropriate cognitive
and linguistic skills (Gutstein & Whitney, 2002). Individuals with autism may have a
variety of deficits, including cognitive and linguistic skills, dependent on the severity of
the diagnosis.
Disorders in the ASD spectrum are complicated conditions that require an
integrative therapeutic approach involving many factors including behavioral (Patel &
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Curtis, 2007), speech and occupational therapies. Autism is diagnosed with a semistructured assessment, The Autism Diagnostic Observation Schedule-Generic (Lord et al.
2000). This is a standard measure of social and communication deficits associated with
the spectrum of autism (Lord et al., 2000). An additional measure used to diagnose ASD
is the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) (American
Psychological Association, 2010). This measure is produced by the American
Psychological Association and provides common language and standard criteria for the
classification of mental disorders. The diagnosis of autism is dependent on at least 6
behavioral and developmental characteristics. In addition, no other evidence can be
present for similar diagnoses (American Psychological Association, 2010). Children with
ASD are commonly diagnosed by their primary care physician or referred to an agency
with a skilled diagnostician who will implement the aforementioned measures.
There are two major deficit categories that affect children with ASD, including
the child’s ability to regulate behavior and emotions and to have skills associated with
being socially competent. These two areas of deficit are discussed next with respect to
children with ASD.
Self-Regulation in Children with ASD
Behavior and emotion regulation are important components of effective social
functioning. Poor regulation or control is associated with internalizing and externalizing
behaviors (Eisenberg et al., 2001), as well as ineffective social interactions (Batum &
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Yagmurlu, 2007). Moreover, the presence of externalizing behaviors in early years can
lead to later problems in social relationships and has been associated with peer rejection
(Batum & Yagmurlu, 2007), resulting in fewer opportunities for social success and
lasting relationships.
According to Batum and Yagmurlu (2007), emotion and behavior regulation
appear to be separate components operating together in relation to children’s behavior
problems. Previous findings have consistently demonstrated that emotion regulation and
behavior regulation are negatively connected to externalizing behaviors (Batum &
Yagmurlu, 2007). Batum and Yagmulu (2007) argue that it is necessary to differentiate
between these two regulatory abilities on the theoretical level and to examine them
concurrently to clarify their combined and interactional effects on social behavior.
Eisenberg et al. (2000) have noted that behavior regulation is not only affected by
“internal emotion-related process, but the consequences of behavioral regulation often
may influence the course of internal emotion-related processes and states and may
modify future emotion-related cognitive or physiological processes” (p.1368).
Many children with ASD lack both emotion regulation and behavior regulation,
key components of social competence. Thus, the current web site project will focus on
delivering information covering regulatory deficits to parents.
Emotion Regulation
One important component of regulation is the ability to regulate emotions. In the
present project, emotion regulation is defined as “the extrinsic and intrinsic process
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responsible for monitoring, evaluating, and modifying emotional reactions, especially
their intensive and temporal features, to accomplish one’s goal” (Thompson, 1994, p. 2728). Emotion regulation can be conceptualized as a collection of skills related to selfmanagement, development of emotions, and perception of emotional arousal as
appropriate. Although a significant focus is given to the regulation of negative emotions,
emotion regulation should involve both positive and negative emotions (Bridges,
Denham, & Ganiban, 2004).
In typically developing children, emotion regulation is an important aspect of
adaptive emotional and social development, helping in stress management and in the
ability to cope with frustration in both social and non-social situations (Konstantareas &
Stewart, 2006). Studies with typically developing children have established that a child’s
ability to direct attention away from an emotionally arousing stimulus is an adaptive
regulatory behavior (Konstantareas & Stewart, 2006). Emotion regulatory skills begin to
develop in early childhood, but are essential in adaptive social development through
middle childhood. During these years, regulatory capacities become progressively more
complicated and predict children’s competence in several important domains, including
behavioral regulation and social competence (Shields & Cicchetti, 1997). Children who
have a tendency to frequently act out may do so due to unregulated anger and frustration
(Eisenberg et al., 2001).
Batum and Yagmurlu (2007) examined the roles of behavior and emotion in
externalizing behavior problems of elementary students. The participants for the study
resided in Istanbul, Turkey and consisted of children in second grade from seven private
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schools and three public schools. Parents and teachers of the children participated in the
study by completing questionnaires. The sample included data from 104 children whose
age ranged from 83 to 97 months. Batum and Yagmurlu’s (2007) results showed that
behavior regulation and emotion regulation are moderately associated to one another and
both are connected to externalizing behaviors. Externalizing behaviors can be predicted
by low behavior regulation and low emotion regulation. The results also revealed that
externalizing behaviors were uniquely predicted by the two regulatory abilities.
“Emotion and behavior regulation appear to be separate dimensions operating together in
relation to children’s behavior problems” (Batum & Yagmurlu, 2007, p.1). When
children do not have coping strategies for dealing with negative emotions, externalizing
behaviors can result.
Cole, Zahn-Waxler, Fox, Usher, and Welsh (1996) examined the relationship
between expressivity of emotion regulation (highly expressive, modulated, and
inexpressive children) and externalizing behaviors. The longitudinal study consisted of
79 children with the average age being 5 years at onset. The first of five visits began in
preschool and the last visit was at the end of first grade. The results indicated that
children with higher levels of emotion regulation were better able to alter displays of
negative affect. Thus, the current researchers feel it is important to provide children with
coping strategies when they feel heightened emotional arousal.
Children with ASD often show difficulties with emotion regulation (Baranek,
2002; Schaaf & Miller, 2005). Bolte, Feineis-Matthews, and Poustka (2008) compared
emotion processing in 10 adults with high-functioning autism and 10 neuro-typical
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controls. They found children with high-functioning autism displayed fewer emotional
reactions than the normative group when presented with visual stimuli depicting fear and
sadness. Furthermore, Bolte, Feineis-Matthews, and Poustka (2008) found that
individuals with high-functioning autism demonstrated increased arousal to neutral
stimuli, which could indicate that the neutral stimulus presented to the participants in this
study was of special interest to them. Overall, results indicated a change in physical
reaction and self-report of emotion in autism, which may be connected with impairments
in socio-emotional functioning. Baron-Cohen et al. (1997) found impairments in social
emotions in children with ASD, as well as deficits in linking emotions and beliefs.
Children with ASD also demonstrate difficulty with managing stress during
everyday situations. Emotion regulation appears to be an important component of stress
management, helping children to cope with frustration in both social and non-social
situations (Konstantareas & Stewart, 2006). There are documented differences in the
emotion regulation strategies of children with ASD, a finding consistent with welldocumented characteristics and the extensive variability in behavior of children with
ASD (Konstantareas & Stewart, 2006).
Finally, children with ASD also have difficulty understanding discrete emotions.
Anger and fear are different emotions with different associated action tendencies.
Children with ASD often require explicit instruction on what the emotion is, what it looks
like externally, and how it feels internally. Further, ASD children need to be provided
with examples of some activities that will elicit different emotions, and need to be taught
emotion regulation strategies that will provide ideas on what to do if he/she experiences
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undesirable emotions. Such children might develop different emotion regulation
strategies for dealing with anger and fear, and the development of these different styles
may be affected by the degree and frequency with which children experience these
emotions (Bridges, Denham, & Ganiban, 2004).
Behavior Regulation
Behavior regulation can be defined as “the process of initiating, maintaining,
inhibiting, modulating, or changing the occurrence, form, and duration, of behavioral
concomitants of emotion, including observable facial or gestural responses and other
behaviors that stem from, or are associated with, internal emotion-related psychological
or physiological internal states and goals” (Eisenberg et al., 2000, p.1367). Behavior
regulation incorporates two broad dimensions of regulation, reactivity and self-regulation
(Batum & Yagmurlu, 2007). There are four components closely linked to behavior
regulation: attention focusing, attention shifting, impulsivity, and inhibitory control
(Batum & Yagmurlu, 2007). Attentional processes such as focusing and shifting refer to
the ability to sustain attention on tasks. Impulsivity refers to the speed of response
initiation as well as the ability to wait for a desired object or goal. Inhibitory control
involves the ability to plan and suppress inappropriate responses (Batum & Yagmurlu,
2007).
Eisenberg et al. (2000) examined individual differences in one’s ability to
moderate externalizing problem behaviors through behavioral and attentional regulation.
Participants were involved in a longitudinal study. The initial sample consisted of 199
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kindergarten, first, second, and third grade students. Out of the initial sample, 146 were
chosen after they completed a puzzle-box task, and parent and teacher ratings of attention
control, behavior regulation, and problem behavior were completed. Eisenberg et al.
(2000) found that children with externalizing problems were more likely to be low in
attentional and inhibitory control and higher on impulsivity than children low in
externalizing behavior. Dysregulation of behavior predicted behavior problems to be
externalized in children with both “high and low negative emotionality.” Thus, it appears
that behavior regulation plays an important role in externalizing behaviors. Batum and
Yagmurlu (2007) stated that poor behavior regulation in early childhood predicts
externalizing behaviors in middle-childhood.
Children with ASD typically have difficulties with impulsivity and inhibitory
control that can lead to externalizing behaviors. Some of these behaviors occur due to
sensory processing abnormalities which have been linked to higher levels of stereotypic,
rigid, and repetitive behaviors (Baranek, 2002; Dawson & Watling, 2000). Dawson and
Watling (2000) have suggested that, although sensory processing and motor
abnormalities are not universal or specific to autism, the prevalence of regulatory
difficulties in children with autism is relatively high. Individuals with ASD tend to
demonstrate difficulty with responding appropriately when changes occur in the
environment and in regulating emotions and behaviors during everyday situations
resulting in over- or under- arousal and frustration. Dawson and Watling (2000) further
suggested the possibility that two groups of sensory responders, both hypo- and hyperresponsiveness to sensory input, may exist within the autism spectrum.
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Social Competence in Children with ASD
As defined by Nowicki (2003), social competence refers to an interaction of an
individual’s self perception of their social abilities as well as their peers’ perceptions of
the same individual abilities. Social competence has also been defined as “the condition
of possessing the social, emotional, and intellectual skills and behaviors needed to
succeed as a member of society” (Encyclopedia of Children’s Health.com, 2006). Thus,
in order to be socially competent, an individual must possess emotion understanding,
self-regulation, flexibility, conversational skills, an ability to interact in a group, play
behaviors, social problem solving skills, and be able to build and maintain successful
peer relationships (Gumpel, 2007; Halberstadt, Denha, & Dunsmore, 2001; Kyratzis,
2004 ). Social competence is imperative as it is associated with academic success, being
accepted by peer groups, an ability to self-regulate, and greater self-esteem (Arthur,
Bochner, & Butterfield, 1999; Brigman, Webb, & Campbell, 2007; Gumpel, 2007).
Because children with ASD have deficits in the prerequisite components
associated with social competence, it is common for children with ASD to have difficulty
integrating into social situations. Thus, it is important for parents to know what therapies
are available to address development of social competence to further assist their children
in building peer groups and relationships.
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Peer Relationships
Group situations are beneficial to the development of an individual’s identity
(Ford & Milosky, 2008) and acceptance. Peer groups are a “group of people, usually of
similar age, background, and social status, with whom a person associates and who are
likely to influence the person's beliefs and behavior” (Dictionary.com; 2010). There are
several forms of peer groups, including academic groups, play groups, cultural groups,
and many others. However, the common link in all of these groups is that each has a
social dynamic. Group and peer dynamics vary depending on the group’s goals,
personality, location, belief, traditions, and comprising members (Keyton & Beck, 2009).
Peer relationships are relationships in which individuals consider themselves
equals and provide support to each other in any area where support is needed. Peer
groups and peer relationships serve as protection and support, and provide a context to
develop social skills. Children who do not have regular opportunities to engage in peerbased play tend to have an inability to adjust to socially demanding situations (Landau,
Milich, & Whitten, 1984) and thus are more likely to be less popular due to the inability
to form peer relationships or peer groups.
Landau, Milich, and Whitten (1984) found that a decrease in peer popularity is
connected to an increase in solitary play behaviors in children, which in turn is linked to
peer rejection. Diminished popularity and peer rejection can occur if an individual has a
limited repertoire of social skills and/or perceives him or herself as less fluent than peers
in social interactions (i.e., low self-concept or diminished social competence). Children
who are rejected by peers often do not have the opportunity to build skills associated with
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social competence. Peer rejected individuals are often vulnerable as they have no peer
group to protect and support them. Children with developmental delays have been found
to be at greater social risk for rejection than neuro-typical peers (Nowicki, 2003).
Therefore, they have fewer opportunities to build peer relationships and become socially
competent.
Children with ASD have difficulty recognizing basic social cues, making it
difficult to engage in more socially complex skills such as managing and navigating
complex social dynamics. Consequently, individuals with autism are less likely to
conform and integrate into a group, and may tend to engage primarily in solitary play
(Hauck, Fine, Waterhouse, & Feinstein, 1995).
Prerequisite skills for effective interaction in a group include an ability to selfregulate, be flexible, communicate or have conversations, problem solve, participate in
group play, understand roles, and understand rules. Furthermore, to be effective in
groups, children must have basic receptive and expressive skills, including the ability to
make eye contact and to send and receive informational cues, and be motivated to seek
approval, acceptance, or affiliation with a group (Scherwitz & Helmreich, 1973).
Children with ASD often have difficulty with many of these skills. Thus, the current
project presents information to parents who have children with ASD about the
importance of positive peer group experiences and the need for development of
prerequisite skills for peer interactions, as well as services that will facilitate peer
relationships.
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Cooperative Play
In the context of peer interactions, a child’s ability to cooperate in social play is
another indicator of social competence. Play is a tool children use to explore and
interpret the world around them. Play allows children to strengthen their understanding
of social norms and social skills related to developing friendships (McAloney &
Stagnetti, 2009). To play successfully, the individual must have self-regulation,
communication abilities, and flexibility in social problem solving. All of these skills are
important for a child to be able to engage in positive play behaviors and reap the social
and emotional benefits of play-based interactions.
One important skill demonstrated in effective social play is the ability to negotiate
social conflict. In a situation where conflict is present, flexibility, creativity and
compromise are required to find a resolution (Hirt, Devers & McCrea, 2008). Such
flexibility is dependent on the mood or emotional state of the individual (Hirt, Devers &
McCrea, 2008), as well as motivational factors (Dreu, Nijstad, & Knippenberg, 2008) and
cognitive ability. Children with ASD demonstrate difficulty recognizing and expressing
their emotional states and being creative during conflict resolution; thus, it can be
challenging for this population to resolve social conflict effectively.
Communication skills are also critical to children’s ability to engage in
cooperative play. Hughes and De Rosnay (2006) noted that social interaction is mediated
by communicative exchange in all its forms. Several studies show that a child’s social
adjustment is affected by the availability of conversational situations and the ability of
the child to engage in conversations (Hale & Tager-Flushberg, 2003; Peterson & Siegal,
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2000; Woolfe, Want, & Siegal 2002). Woolfe et al. (2002) tested 100 children who were
late-signers and compared their ability to engage in theory of mind and executive
functioning tasks connected with social communication against 39 children who were
native-signers. The researchers demonstrated that native signers had a greater ability to
communicate in social situations and comprehend social situations related to theory of
mind and executive functioning than children with delayed development of language
(Woolfe et al., 2002). Children with ASD often have delays in language development.
This finding may imply that these children’s theory of mind and executive functioning
development may be impeded. Furthermore, social language allows for the development
of interpersonal contact, relationship development, socialization, self-regulation, peer
interaction, and a development of the notion of self within a social setting.
Children with ASD typically show deficits in communication abilities, and
resulting difficulties in cooperative play situations. Furthermore, children with autism
have difficulty developing the social language required in cooperative play (Constantino
et al., 2007). Thus, the current project presents information to parents about play skills as
critical components for the development of social skills in peer settings.
Social Cognitive Skills
Social cognitive skills are also key indicators of social competence and include
social problem solving and emotion understanding. Effective social interaction often
requires that a child be able to solve social problems (Green, Cillessen, Rechis, Patterson,
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& Hughes, 2008; McClure, Chinsky & Larcen, 1978). Social information processing (a
mental process) allows for individuals to be able to solve social problems. Dodge (1993)
describes social information processing as the ability to complete the following sequence:
(a) encode the relevant aspects of the social situation through sensory input; (b) select
what social cues are relevant to the current conflict; (c) store these cues in short-term
memory; (d) apply meaning to the event and the corresponding social cues through what
is known as mental representation; (e) internally elicit an affective behavioral response
through a process known as response accessing; (f) evaluate that response through the
process known as response evaluation; and finally (g) produce the externalized
behavioral response through enactment. Ineffective social interactions and problem
behaviors are linked to difficulties in social problem solving skills.
Solomon, Goodlin-Jones, and Anders (2004) conducted a study on 18 boys, with
ages ranging from 8-12 years old who were diagnosed with either high-functioning
autism, pervasive developmental disorder- not otherwise specified, or Asperger’s
Syndrome. Participants were assessed on intake and then provided a 20-week intensive
curriculum teaching emotion recognition in others and self using discrete individualized
instruction. Participants were taught facial expression recognition, perspective taking;
group problem solving skills, communication and conversation skills, as well as other
theory of mind and executive functioning skills. The results showed marked
improvement in all assessed skills in the individuals who partook in the curriculum over
the control group. By observing that improvements in executive function tasks were
connected with the ability to problem solve and regulate behaviors in social situations,
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Solomon et al. (2004) concluded that deficits in executive functioning may underlie
deficits in social competence.
Children with ASD are documented as lacking social problem-solving skills as
well as having deficits in executive functioning. For example, Bernard-Opitz, Spriram,
and Nakhoda-Sapuan (2001) compared social problem-solving skills of neuro-typical
children to 15 children with ASD who possessed an IQ score above 65. The researchers
presented all children with 8 social problems and a list of possible resolutions depicted on
a computer. They found that children with ASD tended to have more difficulty with
social problem solving skills, presumably due to the deficits in executive functioning.
The researchers also found that children with high functioning ASD could be taught to
solve social problems using an animated computer program. However, unlike their
neuro-typical peers who could generalize these problem solving skills learned by using
the computer program to an in-vivo situation, children with ASD demonstrated a
preference towards computer based social animations over in vivo.
Emotion understanding is another social cognitive skill that is critical to effective
social interaction (Halberstadt, Denham, & Dunsmore, 2001). Emotion understanding is
comprised of recognition of emotions in both self and others, as well as the causes and
consequences of emotional situations (Shaffer, 2005). A lack of skills associated with
emotion understanding such as cue recognition can lead to an inability to navigate social
situations successfully. Emotion understanding is also imperative in successful
communication exchanges, developing relationships, and in self- regulation. For
example, communicative exchanges are comprised of both verbal and nonverbal
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emotional statements. The ability to read and send these emotional messages gives
meaning to social interactions and builds relationships. Hence, the ability to regulate
(Bridges, Denham, & Ganiban, 2004; Eisenberg et al., 2001), analyze (Shaffer, 2005),
give critical thought to, and to communicate one’s emotions as well as others’ allows for
emotional, social, and cognitive growth (Halberstadt, Denham, & Dunsmore, 2001).
Thus, emotional understanding is beneficial as being able to recognize and express
emotions contributes to successful social interactions and eventually leads to social
competence.
Children with ASD often show difficulties with both social problem-solving and
emotion understanding as they have impairments in cognitive and communicative
domains associated with these social-cognitive skills (Nowicki, 2003; Solomon, GoodlinJones & Anders, 2004). Thus, the current web site project will provide information to
parents about these skills.
Therapies for Children with Autism
A variety of therapies show some success in improving social competence,
behavior regulation, and emotion regulation in children with ASD. Individual therapeutic
interventions assist children with ASD to decipher communication skills (Wigram &
Gold, 2006), increase attention (Posner & Rothbart, 2000), increase peer interaction skills
(Barker & Dawson, 1998), self-regulate (Batum & Yagmurlu, 2007; Posner & Rothbart,
2000), acquire emotional understanding (Batum & Yagmurlu, 2007; Wigram & Gold,
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2006), and learn to behaviorally regulate and develop general play skills (Barker &
Dawson, 1998). However, no single therapy addresses all of these skills. Combinations
of therapeutic interventions such as music therapy, behavior therapy, animal therapy,
occupational therapy, and speech therapy are most commonly used to treat multiple
social, emotional, and behavioral deficits in children with ASD.
Behavior Therapy
Behavioral therapies for children with ASD are intended to provide support and
facilitate acquisition of functional skills, cognitive skills, social skills, communication
skills, and motor skills, with the goal of improving overall functioning. Intensive
behavioral interventions beginning at an early age seem to have considerable promise in
treating children with autism (Hurth et al. 1999; Patel & Curtis, 2007; Webster, Feiler, &
Webster, 2003).
Applied Behavior Analysis (ABA) is derived from the experimental analysis of
learning and the conditions that establish behavior (Webster et al., 2003), and is based on
Skinnerian operant conditioning principles. The basic intervention program, now quite
common in the behavioral treatment of autism, consists of identifying deficits within
major domains (adaptive, cognitive, social, behavioral, and motor domains), for which
goals are written related to specific target behaviors. Identified target behaviors are
recorded and are shaped through use of various forms of reinforcement, extinction, and
the development of operant stimulus control. Stimulus prompting and fading of prompts
are used in the development of chaining (series of related behaviors), generalization
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(expansion of initial performance), imitation (replicating observed behavior), and
modeling (demonstrating behavior) (Sundberg & Michael, 2001).
There have been several advances in the behavioral treatment of children with
autism. The majority of these advances are attributable to the development and maturing
of the field of applied behavior analysis and to the extensive work of Ivar Lovaas and his
students (Sundberg & Michael, 2001). Until the innovative work of Lovaas (1977) and
his colleagues at the University of California, Los, Angeles, fewer than two percent of
children diagnosed with autism (1 out of 64) achieved normal functioning (Rutter, 1970).
The Lovaas training program teaches imitation, verbal skills, social, and academic skills
(Lovaas, Ackerman, Alexander, Firestone, Perkins, & Young, 1980). Lovaas (1987)
conducted a multi-year intervention program that compared an experimental group of 19
autistic children who received 40 hours of intensive behavioral “Discrete Trial Training”
(DTT) with a control group of 19 autistic children who received 10 hours of intervention.
DTT is a single cycle of behaviorally based instructional routine. A trial might be
repeated several times in succession, several times a day, over several days, or until the
skill is acquired. Lovaas’ results showed that 47 percent of children in the experimental
group scored within the normal range on standard tests of intelligence and schooling
functioning. In contrast, none of the children in the control group achieved normal
functioning. Since this seminal study, Lovass’ program has become the most widely
used intervention for children with autism.
Much has been learned about ASD from applied behavior analysis research. For
example, early and intensive intervention is essential, behavioral techniques can be
26
extremely effective, and the primary focus of the treatment plan should to be on the
development of language skills (Hurth, 1999; Sundberg & Michael, 2001). Behavior
therapy, if done appropriately, permits children with autism to be able to generalize
emotional, behavioral regulatory strategies, and social competence skills. The current
project focuses on providing parents with information in relation to this intervention,
includes research addressing its effectiveness.
Occupational Therapy and Sensory Integration
Occupational therapy (OT) with Sensory Integration (SI) is designed to guide
children who have significant difficulty processing sensory information that restricts
participation in daily life activities (Schaaf & Miller, 2005). The focus of occupational
therapy is the facilitation of children’s proficiency in the following skills: fine motor,
gross motor, oral motor, sensory reactivity/ processing, posture, praxis, and habituation
(Baranek, 2002).
No neuropsychological theory of autism attempts to explain the unusual sensory
behaviors seen in many ASD children (Rogers & Ozonoff, 2005). However, Jean Ayres,
an occupational therapist with training in educational psychology and neuroscience, has
developed a theory of sensory integration (Schaaf & Miller, 2005) in which “learning is a
function of the brain [and] and learning disorders…reflect some deviation in neural
functions” (Schaaf & Miller, 2005, p.1). This theory, based on principles from
neuroscience, psychology, biology, and education, assumes that some children with
learning disabilities experience difficulty processing and integrating sensory information,
27
which therefore affects their behavior and learning (Schaaf & Miller, 2005). Sensory
integration theory is widely applied to autism by practitioners, even though there have
been non-significant empirical findings and questionable rationales for many of the
sensory therapies (Rogers & Ozonoff, 2005).
Consistent with sensory integration theory, autism appears to be associated with a
wide range of motor impairments. The prevalence of impairments in fine and gross
motor skills appears to be relatively high (Dawson & Watling, 2000). Usually, sensory
features appear to be manifest in children with autism quite early in their development,
usually by 9 to 12 months (Baranek, 2002). For example, clumsiness and gross motor
impairments are common features of Asperger’s syndrome and high-functioning autism.
Additional impairments have been found in skilled movement, eye hand coordination,
speed, praxis and imitation, gait, posture, and balance (Dawson & Watling, 2000). An
individual who demonstrates difficulty with either fine or gross motor skills is often
behaviorally dysregulated and hence often exhibits socially maladaptive behaviors
(Loftin, Odom, & Lantz, 2008). Baranek (2002) notes unusual sensory responses (e.g.,
hypo- and hyper-responses; preoccupations with sensory features of objects) have been
reported in 42 to 88% of older children with autism, and Schaaf and Miller (2005)
reported that 80 to 90% of sensory processing problems are reported in children with
autism. One can speculate that children who exhibit either hypo- or hyper-responses
would have difficulty emotionally, behaviorally, and socially regulating themselves.
Children with autism typically exhibit either hypersensitivity or hyposensitivity in
one or more senses, thus resulting in emotionally, behaviorally, and socially dysregulated
28
individuals. Many children with ASD demonstrate atypical features (e.g. low muscle
tone, repetitive motor movements, oral motor problems) or test in the developmentally
delayed range on standardized motor assessments (Baranek, 2002). Therefore, these
children who demonstrate atypical features are at a disadvantage with respect to having
the ability to participate in gross motor activities with peers that is critical for social
competence.
Despite evidence that children with ASD show sensory integration difficulties,
there is limited support for the effectiveness of SI therapy. Ayres and Tickle (1980)
applied the theory (SI approach) to children with autism and noted that it helped decrease
sensitivity to tactile and other stimuli that interfere with their ability to learn, play, and
interact. Thus, sensory-motor interventions are not acknowledged to represent the full
scope of therapeutic educational services offered by specialized professionals. Sensorymotor interventions are often used as an addition to a more holistic intervention plan
(Baranek, 2002). Compensatory interventions and environmental adaptations are also
utilized and often preferred due to the more immediate effects on meaningful
participation (Baranek, 2002).
A thorough review of literature on OT revealed little empirical support for its
effectiveness for children with autism. Schaff and Miller (2005) noted that out of the 80
total studies that have been conducted in the field of OT, about half of them show some
type of treatment effectiveness. Some studies reported the therapy being effective and
others suggested that the intervention was equally valuable as other treatments (Schaff &
Miller, 2005). Findings of these 80 studies may be contradictory due to procedural
29
restrictions, such as the independent variable not being defined in a way that is replicable,
and interventions not being individualized. The current project focuses on disseminating
information about OT, as it is a primary therapy used to treat children with ASD, with
many claiming that the therapy assists in decreasing sensitivity to tactile and other stimuli
that inhibits the ability to learn, play, and interact with others. However, the inconclusive
nature of the empirical tests of its effectiveness will also be stated.
Speech Therapy
Speech therapy uses teaching strategies such as imitation, repetition, object
associations, and verbal approximations to help facilitate language acquisition in children
with ASD (Rogers et al., 2006). Speech therapy also addresses other common
communication skills such as: basic communication exchanges, vernacular and linguistic
abilities, requesting, protesting, sharing, commenting, eye gazing, gesturing, facial and
body language, and vocalizations (Ingersoll, Dvortcsak, Whalen, & Sikora, 2005), skills
that are typically lacking in children with ASD.
There are two general approaches for developing communicative speech in young
children with autism. These approaches have been available to the field of speech and
language pathology (SLP) for many years and typically apply learning theory principles
to development of speech. One method, commonly known as Discrete Trial Training
(DTT) used in behavioral therapy, uses an informative, adult-directed instruction
delivered from pre-set curriculum often taught in mass trials. In this approach, children
are taught to attend to adults and respond to simple instructions, to imitate manual, oral
30
motor, vocal behavior, and then to imitate speech (Rogers et al., 2006). A second
approach involves a more naturalistic use of learning theory principles, also known as
incidental teaching or pivotal response training. In this approach, the intervention begins
with a child-initiated behavior in a natural interactive context, such as a child making a
sound and the therapist finishing the word. The therapist uses modeling and shaping
techniques, follows the child’s initiation with a prompt or model of more sophisticated
verbal behavior (Rogers et al., 2006). Consequently, the child’s verbal behavior is
reinforced with the child-requested item, thus providing a “natural” reinforcer.
Many published studies have supported the efficacy of the discrete trial teaching
that SLPs use (Rogers et al., 2006). However, little research has investigated the process
of language acquisition in children with ASD, particularly at the very early stages of
development (Swensen, Kelley, Fein, & Naigles, 2007). Yet Rogers et al. (2007) stated
that language proficiency is one of the two most important variables in predicting
outcomes in autism (the other being IQ). The language impairment in autism is currently
understood as a developmental disorder stemming from numerous potential mechanisms,
including impaired development of earlier pre-linguistic communicative mechanisms
(Rogers et al., 2006).
Half of children diagnosed with ASD acquire some type of verbal communication
(Lord & Paul, 1997), and children diagnosed with ASD who have communicative deficits
tend to also have behavioral excesses (Carr & Durand, 1985; Koegel, Koegel, & Surratt,
1992). Lack of social engagement, joint attention (Kasari, Paparella, Freeman, &
Jahromi, 2008), imitative ability, and presence of cognitive impairments are assumed to
31
play pivotal roles in poor language acquisition (Rogers, et al., 2006). Thus, it is crucial
for children diagnosed with ASD to acquire skills such as social engagement, joint
attention, and imitation in order to be able to acquire language (Rogers et al. , 2006),
which is taught through various speech strategies. The current project focuses on
providing families with information on the role that social language plays in emotion
regulation and behavior regulation and social competence in children who are diagnosed
with ASD, as well as the potential benefits of speech therapy.
Music Therapy
Music therapy is designed to integrate songs into learning in the hope that
children will overcome some deficits through fun, repetitive musical activity. Music
therapy creates a natural structure in which children can engage in behaviors that
contribute to overcoming social deficits such as a limited repertoire of facial expressions,
poor peer interactions, limited gesturing, verbalizations, and communication skills, and a
lack of joint attention (Walworth, 2007). These skill sets are all necessary for emotion
and behavior regulation, leading to competent social interaction.
Wigram and Gold (2006) reviewed multiple studies and found that in children
with ASD, music therapy has been found to increase motivation, communication
attempts, attention, and social interaction skills. Kern and Aldridge (2006) conducted a
small study on 4 children diagnosed with ASD. The case studies were conducted across
4 different settings where music centers were developed. In each setting a different
method of music therapy was conducted, some in group settings, some in individualizes
32
settings with a neuro-typical peer. Across all settings and subjects the researchers found
that music therapy increased the opportunities and the overall success of the peers
interaction and play on the playground within the music therapy context, but it did not
increase child initiation of social interaction. Thus, while music therapy can improve
certain social skills, it has not been found to be sufficient in successfully improving
socially competence, and additional therapeutic interventions are needed for children
with ASD.
Animal Based Therapies
Animal therapies come in many forms. The most prevalent forms in relation to
children with developmental delays are Hippotherapy or equestrian therapy (i.e.
horseback riding) and pet therapy. Equestrian based therapies focus on the repetitive
movements of the horse to improve balance, posture, mobility and function of children.
Hippotherapy or equine assisted therapies combine physical, occupational, and speech
therapy treatment by utilizing equine movement (Macauley & Gutierrez, 2004). During
Hippotherapy sessions clients sit on the horse and have to physically learn to
accommodate the “three dimensional movements of the horse’s walk” (Macauley &
Gutierrez, 2004, p. 205).
The demonstrated physical benefits of Hippotherapy for children with
developmental delays and physical disabilities include: improved muscle symmetry
(Benda, McGibbon, Grant, & Davis, 2003), postural alignment (Bertoti, 1988),
facilitation of normal movement (McGibbon, Andrade, Widener, & Cintas, 1998),
33
improved balance and gait (Haehl, Guiliani, & Lewis, 1999), and improved respiratory
and motor control of speech (Macauley & Gutierrez, 2004). Macauley and Gutierrez
(2004) conducted a pre/post case study with 3 boys and their parents. Parents completed
a questionnaire rating their satisfaction with their child’s communicative abilities before
and after receiving Hippotherapy. The results showed that parents were more satisfied
with their child communicative abilities post treatment then pretreatment. Parents were
also noted to observe an increase in their child’s motivation and attentional skills.
Lehrman and Ross (2001) in a single case study of a 9-year-old girl who had physical and
visual impairments, that after a 10-week Hippotherapy program she had improvements in
oral motor movements, verbal communications, and enhanced physical movements.
The demonstrated psychosocial benefits of animal therapies include improvement
in self-concept (Beckman, 1992), locus of control (Tucker, 1994), and affect behavior
regulation through having to follow instructions and exercise self-control for safety
(Emory, 1992). In a case study, Bizub, Joy, and Davidson (2003) observed 5 adults with
psychiatric disabilities participating in Hippotherapy. The participants took part in a 10week horseback riding program wherein, according to self report they were successful in
learning basic horsemanship, as well as acquiring psychological benefits of increased
self-efficacy and esteem. Research has also shown that pet therapies can promote social
interactions, emotional stability, self-esteem, a sense of interdependence and diminished
loneliness, anxiety, and feeling of isolation in children with developmental delays and
physical disabilities (Barker & Dawson, 1998; Brickel, 1979; Churchill, Safaoui, McCabe
34
& Baun, 1999; Cole & Gawlinski, 1995; Fick, 1993; Zisselman, Rouner, Shmeuley &
Ferrie, 1996).
Social adaptation of children with ASD is linked to participation in animal based
therapies. Social benefits of animal therapies include: an increased range of social
participation (Hart, 2000), a bridging effect between people with disabilities and their
workers (Cole & Gawlinski, 1995), nurturing responses elicited from the children who
are involved in pet therapy programs, general acceptance of animals as companions for
affection, acceptance, and also as confidants (Kaminski, Pellino, & Wish, 2002).
Children with ASD also experience improvements in an array of language measures
when receiving Hippotherapy treatment when compared with children receiving
treatment in a public school setting (McCauley & Gutierrez, 2004). Furthermore,
working with animals can increase the desire to participate in activities (Bizub, Joy, &
Davidson, 2003) and can buffer stress and anxiety and increase relaxation (Hart, 2000).
The aforementioned benefits of animal based therapies address some of the most
crucial skill and social deficits of children on the spectrum. Animal therapies promote
gains in social skill acquisition as well as generalization of social skills (Bizub, Joy, &
Davidson; 2003). Thus, the current web site project will include information on animal
based therapies as a beneficial therapeutic component for children with ASD in
developing social skills.
35
Parental Knowledge of ASD
According to Thomas, Morrissey, and McLaurin (2007) parental knowledge of
autism and autism related services is minimal, and is gained primarily from public
schools and primary care physicians. However, schools and health care practitioners
often do not know what services are useful or how parents can access them. With the
limited accessible knowledge that these parents face, it is common in the autism
community for some children to receive few or inadequate services. It is crucial for
parents to be well-versed to assist in making informed decisions about their children’s
early intervention. After a thorough literature review, the researchers of this current
project were unable to locate research on what families of children with ASD know and
the information and knowledge being sought. Thus, this current web site project provides
these parents with substantial knowledge about deficits of autism and the therapies
provided for children with autism.
Because information about autism community groups is not easily accessible,
parents of children who are recently diagnosed with autism often find themselves
overwhelmed, uninformed, and isolated. Families’ cultural perceptions of developmental
delays may further isolate parents of children with developmental delays if autism is seen
as shameful or is not understood within the culture (Rogers- Adkinson, Ochoa, &
Delgado, 2003). This current website project is an attempt to provide parents with a
comprehensive list of contacts to community groups, advocacy groups, and service
providers in the Greater Sacramento area.
36
Conclusion
A careful review of the literature has indicated that children with ASD have
substantial deficits in emotion regulation, behavior regulation, and social competence.
The research demonstrates that addressing these deficits are critical to the successful
treatment of autism in order to allow for individuals with autism to succeed socially.
Furthermore, the research review in relation to therapies suggests that individual
therapies can potentially assist children with ASD to overcome these primary deficits and
increase overall function. However, in order for children diagnosed with ASD to receive
these critical services it is imperative that parents have easily accessible information
about these primary deficits and the therapeutic interventions available to treat them. As
a part of this project, a web site was developed to disseminate important information
related to autism diagnosis and research, therapeutic interventions, and community
resources, to parents of children with ASD. A needs assessment with parents of children
with ASD will also contribute useful information for this web site.
37
Chapter 3
METHOD
Project Design
The purpose of this project was to develop a web site to provide important
information to families who have children living with autism, including common deficits
children with autism display, interventions, and social networking groups and services in
the greater Sacramento area. The target audience for the project included families in the
greater Sacramento area with children aged 17 months to 18 years, recently diagnosed
with autism.
Website Development
Literature Review
A literature review was conducted investigating ASD and the primary deficits
associated with these disorders. The research demonstrated severe deficits associated
with emotion regulation, behavior regulation, and social competence. The researchers
further investigated emotion regulation, behavior regulation, and social competence
finding that the skills associated with these domains were common deficits of children on
the autism spectrum. Furthermore, the researchers investigated common treatment
38
options addressing these deficits. The literature review revealed a substantial amount of
valuable information about primary ASD deficits and treatment efficacy, which was then
incorporated into the website.
Web Search
A web-based search was conducted for available information related to autism
and therapies. The website search revealed that, although some critical information is
available, it was not presented to parents in an easily accessible manner. Rather, websites
revealed a substantial amount of disorganized information. The researchers frequently
observed that website content was focused on promoting political agendas or providing
individual service providers’ contact information, or minimalistic descriptions of autism
and therapeutic services. A goal of the current website project was to present information
about autism and therapeutic interventions in an organized and comprehensive manner
that would be easily followed by parents of children with ASD.
Needs Assessment
Five parents of a child with autism (diagnosed in the last two years), were
recruited through professional contacts on a voluntary basis. Participants were given a
written survey in their homes to gather information about their understanding of autism
and the kinds of services available. The assessment contained five questions: (a) Where
do you (or would you) go to find out about therapies and treatment available for children
with autism? (b) Where do you (or would you) go to find more information about
39
research in relation to autism? (c) Where do you (or would you) go to find out about local
services available for children with autism? (d) What additional information would you
like to know about autism? (e) What kinds of information would be useful to provide on a
web site for families with children with autism? (See Appendix B).
The results from the preliminary assessment revealed that most parents seek
information about therapies, treatment, research, and local services available to children
with ASD using the internet and healthcare providers. Approximately 40% of parents
revealed that they found additional sources by using Alta regional center’s website,
Warmline, and Families for Early Autism Treatment (FEAT). The assessment also
showed that parents would like information about causes of autism, the variability of
symptoms of ASD, as well as treatment options that provide the best outcomes for their
children. According to the assessment, parents sought information in regards to “a
directory of local services and play groups for children on the spectrum.” Additional
information was requested on the “different types of therapies offered as well as success
stories and stories of the struggles of the parents and the children.” Parents also
requested “information on how to interact with my child and how to help them live a
normal life.” The web site was created to include the material sought by parents in the
needs assessment.
Creating the Website
The research gathered from scholarly review, local agency search, and needs
assessment was integrated into a web site for families. The website was developed using
40
Serif Webplus X2 (http://www.serif.com/webplus/). This program is Photoshop based
and does not require knowledge of HTML. After the website was developed it was
posted on http://autismliving.freeoda.com/.
Website Evaluation
A computer-based assessment of the efficacy of the website was conducted in
order to determine if the website met its goals, specifically: (a) to provide information on
therapies, research, and local services; (b) to be easy for parents to use and; (c) to impart
new and critical knowledge to parents of children with ASD. Five parents with children
diagnosed with ASD were asked to view the website and complete a short survey.
Participants were recruited from professional contacts with the only selection criteria
being that they were from the target audience for the website, that is, that they have a
child between the ages of 18 months and 18 years diagnosed with ASD, and live in the
greater Sacramento area. Because this was not a research study but a program evaluation,
the researchers did not collect any other demographic information from these families.
The researchers sent the participants a link to the website and an evaluation
survey via email. The participants had no specified time limit to review or complete the
website evaluation. The survey contained six questions using a five point Likert-type
scale or open-ended questions: (a) How easy is the website to use? (b) How helpful is the
website with regard to providing information about: therapies/treatment for children with
autism, research on autism, local services for children with autism? (c) Did you learn
41
anything new about ASD treatment and services from the website? If so, what? (d) Did
you learn anything new about ASD research from the website? If so, what? (e) What
additional information do you think would be useful to add to the website? (f) What
suggestions do you have to improve the website? (See Appendix C). Participants emailed
their completed surveys back to the researchers. The results of the assessment were used
as part of a general evaluation of the website and are reported in chapter 4.
42
Chapter 4
CONCLUSIONS AND RECOMMENDATIONS
The purpose of this project was to provide important information, not easily
accessible to families of children living with autism, through a website developed
specifically for the project. ASD is a complex neuro-developmental disorder with onset
before 3 years of age, which severely compromises functioning in multiple
developmental domains (Rogers et al., 2006). Children with ASD often show deficits in
the social domain when compared to typically developing children (Bernard-Opitz,
Sriram, & Nakhoda-Sapuan1, 2001; Webster, Feiler, & Webster, 2003). Many children
with ASD lack emotion regulation and other key social skills related to social
competence. Parents often report not having accurate information about common
deficits, interventions available to them, the efficacy of those services (Thomas,
Morrissey, & McLaurin, 2007) and existing ASD websites are often incomplete or
difficult to navigate.
The researchers consulted several sources in order to develop the website. First,
the authors consulted scholarly literature on ASD, ASD treatment options, and treatment
effectiveness. Next, the authors conducted a thorough web search of existing web-based
information for families, as well as a search of local (northern California) agencies and
services for children and families. Finally, a needs assessment was conducted with
families of children with ASD to reveal gaps in parents’ knowledge.
43
The resulting website focused on a description of disorders on the autism
spectrum, common deficits that children with autism face, including social competence,
emotion regulation, behavior regulation, as well as other common deficits associated with
these primary areas. Furthermore, the website provided descriptions of, and current
research on, behavior therapy, occupation therapy, speech and language therapy, music
therapy, and animal therapy. Additionally, the website provided parents with links to
social networking groups, and information about local services in the greater Sacramento
area (see Appendix A).
Website Evaluation
After the website was posted, its usefulness was evaluated by five parents of
children with ASD. The website evaluation survey contained six questions using a five
point Likert scale or open ended responses: (a) How easy is the website to use? (b) How
helpful is the website with regard to providing information about: therapies/treatment for
children with autism, research on autism, local services for children with autism? (c) Did
you learn anything new about ASD treatment and services from the website? If so, what?
(d) Did you learn anything new about ASD research from the website? If so, what? (e)
What additional information do you think would be useful to add to the website? (f) What
suggestions do you have to improve the website?
Most parents who reviewed the website described it as an effective tool for
conveying information. One parent wrote that the website was “straight forward, easy
44
links, additional information was made available with ease and for clarity.” Additionally,
another parent wrote: “I learned about the varying degrees of autism and different
behavior patterns that present in each individual case. I learned that early intervention is
the best hope for treatment. I was happy to see local support groups available to help us
in this difficult time.” However, another parent described the website as conveying
pertinent information, but not providing new information. This participant reported that
he/she was well versed in information on autism: “No I didn’t learn anything new from
the website, but not from the fault of the website since I try to remain current on latest
research through a variety of sites in general. However, this site would be very helpful to
a new parent with an autistic child.”
All participants noted that they found the website presented important information
in a manner that was logical and helpful. One parent wrote: “It’s good to see the research
is being done for a wide range of autistic disorders. This site is helpful in determining the
basic symptoms and links to studies. I’m glad to know there are a variety of treatment
approaches available.”
Participants also noted that, although the website was comprehensive, they would
like to see more information about other families in the same situation. “I think it would
be useful, if parents are willing to share, to see stories of both success and trials
associated with each therapy.”
The results from the evaluation survey indicated that the parents thought that the
website was extremely easy to use, was clear and concise, and presented information in a
sequential manner. Parents reported that the website was comprehensive, easy to
45
navigate through, and was a good source of information about therapies/treatments,
research, and local services for children with ASD. All parents who participated in the
evaluation reported that they learned information in regards to ASD treatments and
research. Finally, some participants requested success stories related to each therapy and
using less technical terminology.
On a Likert scale from 1 to 5, (one being very unhelpful and five being very
helpful), families unanimously reported , “very helpful,” with a 5 out of 5 rating on
effectiveness of disseminating information on therapies/treatment for children with
autism, research on autism, and local services for children with autism.
Overall, the researchers believe that the website project was successful, as the
parent feedback was positive. Additional feedback from parents would provide more
insight into how to improve the website. Furthermore, following suggestions from
parents, such as adding personal stories of success for each therapy, will enhance the
usefulness of the site in the future.
Regarding the content of the website, it was surprising to these researchers how
difficult it was to find peer-reviewed evidence regarding the efficacy of therapies. The
researchers focused on building a website that conveyed information about therapeutic
interventions and the overall success as reported in empirical research. However, many
of the common ASD therapies had little in the way of conclusive empirical support for
their effectiveness. For example, a thorough review of literature on occupational therapy
did not reveal empirical support for its effectiveness for children with autism. Many
published studies have supported the efficacy of the discrete trial teaching that speech
46
and language pathologists use (Rogers et al., 2006). However, little research has
investigated the process of language acquisition in children with ASD, particularly at the
very early stages of development (Swensen, Kelley, Fein, & Naigles, 2007). Although in
some children with ASD, music therapy has shown a slight improvement in social
interactions and motivation to interact, it has not been found to completely assist children
in overcoming dysfunctions in social competence. Case studies related to animal based
therapies have shown that there are positive physical and psychosocial benefits that occur
due to participating in a 10 week program. However, because of the heterogeneity of
skill sets and deficits in children with ASD, the studies lack the ability to replicate the
independent variables.
All of the therapies discussed in the literature review and web site are currently
used as treatment options for children with ASD. However, due to the scarce empirical
support for these therapeutic interventions when looking across all children with ASD,
the researchers conclude that there is still a need for more research. It has been
demonstrated that replicating studies for these treatment options is nearly unattainable
given that there is no replicable independent variable due to the variability in children and
diagnoses. More case studies are thus needed across the various fields to demonstrate the
effectiveness of therapeutic interventions, or the lack thereof, so that parents and
practitioners may have a clearer understanding of the benefits for each therapy.
With an aim of increasing the number of families receiving services, the
researchers conducted a thorough search for ASD services to provide direct contact
information for service providers as well as a synopsis of what each provider claimed to
47
do. This search for services, and the authors’ own professional experience, suggests that
there is a need for greater services for families of children with ASD. This is due to an
increasing amount of children with an ASD diagnosis and a decrease in funding for
mental health and support services overall, and suggests a greater need for establishing
evidenced-based effective therapies.
Recommendations
Based on the initial evaluation, several revisions to the site will be made,
including a parent bulletin board where families can share experiences, ask questions of
other families, and establish supportive connections. The researchers will also enhance
the web site by posting articles of the month addressing the most current research that has
been conducted. Additionally, the website will have a place for parents to post questions
about the articles and receive responses from the researchers.
The researchers recommend that the website be distributed and evaluated on a
larger scale in order to make continual improvements. The researchers have included a
comments box on the website with the intent of gaining insight from parents on
additional information that is needed.
The authors intend to distribute the URL for the web site to therapy practitioners
and advocacy groups in order to circulate the web site to families of children recently
diagnosed with ASD. The website may be useful for assisting parents of children who
48
have a child who has been recently diagnosed with ASD to learn about the basics of
autism and connect with the other families in the ASD community.
The website would need to be maintained and updated to keep the information
current. The researchers will update the website monthly for 6 months. Updates will
include posting the most current research, and monitoring the bulletin board for
appropriate content. As new research emerges the researchers will make it available on
the website through links to the original empirical article. The researchers will include a
brief synopsis of the new research as well as a general tips section about how the
information applies to families and children. One limitation of providing research
information with the limited contact to the web providers is that information may be
misinterpreted. After 6 months the researcher will reassess their ability to maintain the
website. The website will remain available as long as one viewer accesses it monthly.
49
APPENDIX A
Website Content
(Http://autismliving.freeoda.org)
50
51
52
53
54
55
56
57
58
59
60
61
62
63
64
65
66
67
68
69
70
71
72
73
74
75
76
77
78
79
80
81
82
83
84
85
86
87
88
89
90
91
92
93
94
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100
101
102
103
APPENDIX B
Needs Assessment Survey
Consent Agreement
I have received a copy of the consent form and have read, understand and agree to
participate in this project.
Yes □
No
□
1. Where do you (or would you) go to find out about therapies and treatment
available for children with autism?
2. Where do you (or would you) go to find more information about research in
relation to autism?
3. Where do you (or would you) go to find out about local services available for
children with autism?
4. What additional information would you like to know about autism?
5. What kinds of information would be useful to provide on a website for families
with children with autism?
104
APPENDIX C
Website Evaluation Survey
After reviewing the website please answer the following:
1. How easy is the website to use?
1
very difficult
to use
2
3
4
5
very easy
to use
Comments:______________________________________________________________
________________________________________________________________________
________________________________________________________________________
2. How helpful is the website with regard to providing information about:
…..therapies/treatment for children with autism
1
very unhelpful
2
3
4
5
very helpful
2
3
4
5
very helpful
3
4
5
very helpful
….research on autism
1
very unhelpful
….local services for children with autism
1
very unhelpful
2
Comments:______________________________________________________________
________________________________________________________________________
105
3. Did you learn anything new about ASD treatment and services from the web site? If
so, what?
4. Did you learn anything new about ASD research from the web site? If so, what?
5. What additional information do you think would be useful to add to the web site?
6. What suggestions do you have to improve the website?
106
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