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124 Chapter 7 Autism Spectrum Disorder
Protective factors
Alternative
Cumulative
Cascading
Figure 7.6 Multiple pathways may lead to autism spectrum disorder
Routes
Autism
symptoms
Risk factors
Source: Gliga, Jones, Bedford, Charman, & Johnson (2014). From early markers to neuro-developmental mechanisms of autism.
symptoms
there protective factors that may be identified in infancy or toddlerhood that might explain why the majority of high­risk infants do not go on to meet criteria for ASD, even though they have many of the same indices (from genetics to phenotypes) as infants who do go on to have ASD” (Tager­Flusberg, 2014, p. 657). The most useful etiological models will address all of these developmental pathways.
Effects
Autism
symptoms
Compounded
Environment
development
Genes and Heredity
Most children with autism are born to parents without autism. Given high heritability and familial clustering, this occurs because the genetic variants carried by unaffected parents are passed to their children (Constantino et al., 2021). Hundreds of genes have been identified that contribute to ASD risk (Lord et al., 2018; Thapar & Rutter, 2021). Polygenic models of autism focus on the accumulating and cascading effects of multiple genes with a mix of common variants, rare variants, and de novo mutations. Common variants contribute most of the risk, each with small impact. Rare variants contribute less overall risk, but with larger impact. De novo mutations appear to be more frequent with older parents, especially older fathers (Mandy & Lai, 2019). Genetic models also help clarify the overlap between ASD and other neurodevelopmental disorders such as intellectual disability and ADHD by identifying genetic mechanisms that disrupt multiple brain processes (Constantino et al., 2021; Thapar & Rutter, 2021).
range from 65%–93% (Bai et al., 2019; Bralten et al., 2018; Lord et al., 2018; Thapar & Rutter, 2021). Despite high heritability, however, there is significant variability in the clinical presentations of MZ twins who are both diagnosed
Heritability estimates across studies and across countries
Effects
Autism
during
with ASD. This suggests a possible role for non-shared environmental factors and epigenetic processes (Castelbaum et al., 2020; Thapar & Rutter, 2021).
Baby sibling research, as well as research on the broad autism phenotype, supports genetic and dimensional explanations. Approximately one in five siblings of older siblings diagnosed with ASD are also diagnosed with ASD (Lord et al., 2018; Vivanti & Messinger, 2021). There is also compelling evidence of overlap between the genetics of ASD, autistic traits, and the broad autism phenotype (Klin et al., 2020). Studies of parents of children with ASD reveal a wide range of prevalence estimates for the broad autism phenotype (dependent on research designs), from 3% to 80%. The broad autism phenotype is more frequently observed in fathers (Rubenstein & Chawla, 2018).
Gene-by-environment-by-time processes and interactions such as active and evocative gene-environment correlations provide additional information about the development of ASD. Gene-by-environment-by-time explanations must account for the ongoing influence of genes over the lifespan, gene-brain-behavior connections, and the influence of environmental factors at various developmental periods (Klin et al., 2020; Thapar & Rutter, 2021).
Physiological Factors
Physiological factors influencing brain development, brain struct ure, brain organiz ation, and brain chemistr y help explain the multiple impairments observed in ASD. At the macro­level, there is abundant evidence that brain development is atypical. The growth dysregulation hypothesis proposes that the usual well-controlled process of brain growth and organization goes awry, leading to the clinical symptoms of autism (Courchesne et al., 2011; Courchesne & Pierce, 2005). It appears that early brain overgrowth in both gray and white matter in the frontal and temporal regions during infancy and early childhood is followed by an accelerated rate of decline in size and possible further deterioration from adolescence forward (Courchesne et al., 2011; Lord et al., 2018).
At the micro-level, investigations of neuronal and synaptic growth and pruning, along with methylation, also reveal atypical processes (Johnson et al., 2015). The over-pruning hypothesis describes “overly aggressive synaptic pruning” in the sensory and/or motor regions (Thomas et al., 2016). Brain chemistry research examines protein networks and the balance between inhibitory and excitatory neurotransmitters, with a focus on atypical signal-to-noise ratios in neural processing and poor-quality synaptic processing (Bralten et al., 2018; Gliga et al., 2014; Johnson et al., 2015).
Atypical structure and function of multiple brain regions associated with joint attention, face processing, and the social reward system have been identified (Clements et al., 2018; Mundy, 2018). In addition, dysfunction in the mirror neuron system has also been investigated (Oberman & Ramachandran, 2015). Mirror neurons are located in the cortical motor system and respond to the observation of others’ motor acts. Mirror neuron activity is believed to
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Etiology 125
underlie the understanding of motor acts done by others as well as the intentions behind the actions. In children with ASD, dysfunction in the mirror neuron system may help explain some of the difficulties in social cognition that are a core component of the disorder.
Although there is compelling data about the roles of specific brain regions and processes in ASD, there has been a major shift toward brain-wide explanations. These whole­brain approaches examine atypical connectivity across brain regions, with particular attention paid to circuits connecting social, cognitive, and emotional processes (Constantino et al., 2021; Ecker et al., 2022; Szatmari et al., 2016). Understanding both underconnectivity and overconnectivity is complicated and must take into account patterns of atypical connectivity over development. Atypical brain structure, function, and connectivity are also observed in individuals with the broad autism phenotype (Thapar & Rutter, 2021)
Johnson et al. (2015) describe several key characteristics of brain organization and function: built-in redundancy; hierarchical organization, with the prefrontal cortex “uniquely placed to influence other brain regions” (p. 428); niche construction, with an emphasis on individuals’ active construction of their environments; and adjustment of developmental rate. For children with autism, the hypothesis is that “the attentional style characteristic of autism (i.e., overly focal, biased to simple repetitive events, and highly alert) is the result of an atypical brain adapting to the pace and quantity of information flow” (Johnson et al., 2015, p.
435). Redundancy, however, means that there may be ways to intervene so that individuals can compensate for atypical network structure or function.
Overall, atypical brain-behavior processes influence a range of ASD patterns and pathways. Early disruptions of molecular, cell, and brain circuitry that interact with environmental factors over time provide strong evidence for “a brain-behavior tight system of interdependence,” with “brain-mediated, bi-directional, and iterative relationships between a child and their social and physical environments” (Klin et al., 2020, p. 1180). Additional data supporting the impact of brain-behavior processes in the development of ASD are provided by studies of medical conditions associated with adverse consequences on early brain development. Children with extreme premature birth, congenital heart disease, and fragile X syndrome, for example, display atypical brain structure and function as well as an increased risk for ASD (Constantino et al., 2021; Klin et al., 2020).
Social and Cognitive Factors
Investigators have long attempted to identify an essential or primary cognitive deficit that would account for the atypical development and impairment observed in autistic children. The core cognitive skills that have received the most attention include theory of mind (ToM) and central coherence. As previously defined and discussed, ToM refers to an ability to
attribute mental states to others. Autistic children and adults frequently display difficulties with ToM assessments. Even when autistic individuals are able to understand what others think, feel, and know, many struggle with appreciating the ways in which others’ mental states may differ from one’s own (Deschrijver & Palmer, 2020; Wellman, 2018). The central coherence hypothesis is based on the idea that most individuals attempt to perceive and construct meaning from information that is part of an environmental whole (Frith, 2012; Frith & Happé, 1994). Information makes sense, or is coherent, because it is part of something larger than itself. Autistic youth are at a disadvantage because they process information piecemeal, in a more fragmented fashion. When cognitive tasks involve attention to detail, however, such as identifying embedded figures in a drawing, autistic individuals do better than non-autistic individuals (Baron-Cohen, 2010; Johnson et al., 2015). Indeed, the perceptual functioning of autistic children has sometimes been described as especially skillful. This is an example of a strength-based understanding of autism (Frith, 2012).
Baron-Cohen (2010; Greenberg et al., 2018) takes a somewhat different approach to atypical cognitive functioning. He describes the empathizing–systemizing (E– S) theory, which includes below-average empathy (indexed by poor performance on ToM tasks) and above-average systemizing. Systemizing is “the drive to analyze or construct systems” (Baron-Cohen, 2010, p. 129). Rules define systems, and these rules can be identified or discovered. Examples include mechanical systems (e.g., locks), numerical systems (e.g., timetables or calendars), natural systems (e.g., weather patterns), or abstract systems (e.g., musical notation). Autistic individuals frequently display a preference or skills related to systemizing (Greenberg et al., 2018). Although each of the cognitive factor explanations have empirical support, research to date has not identified a single, primary cognitive deficit (Vivanti & Messinger, 2021).
In contrast to explanations focused on cognitive deficits and differences, social motivation theories of autism emphasize atypical processes related to social attention, social engagement, and social rewards. Difficulties in social communication and social interaction contribute to frequent and cumulative experiences of atypical reciprocal social interaction, with adverse impacts on brain and behavior development. This trajectory leads to ASD (Klin et al., 2020; Mundy, 2018; Vivanti & Messinger, 2021). According to these social theories, autistic infants and toddlers “create their own individual niches which constrains the environmental realm within which they will learn …. [They] may miss thousands of opportunities for social learning every day, and several million opportunities for social learning within their first 2-3 years of life” (Klin et al., 2020, p. 1181).
A detailed exploration of the foundational social skills in which initial difficulties or atypical patterns interact with environmental variation provides support for social explanations. Developmental cascades for motor/sitting
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126 Chapter 7 Autism Spectrum Disorder
behavior, visual attention, and sleep contribute to everyday functioning (Bradshaw et al., 2022). (Bradshaw et al.,
2022). Motor/sitting cascades, for example, influence multiple domains, including perception, language, and relationships. Sitting infants have a greatly expanded view of their surroundings. These expanded views allow for new and ongoing opportunities for joint attention and social interactions. Visual attention cascades explain how early atypical attention patterns impact social attention, social motivation, and learn ing. Sleep c ascades identif y connections between sleep and brain development, and describe how brain organization influences arousal, arousal modulation, self-stimulatory behaviors, and social interactions.
These developmental cascade models are consistent with explanations of a developmental substructure for autism (Constantino et al., 2021). This framework provides information linking early atypical genetic backgrounds with biological and psychological processes that lead, over time, to the emergence of intermediate difficulties—the developmental substructure—and later to autism spectrum disorder. Autism, then, “may arise from any number of distinct disruptions (or combinations thereof) to brain or developmental processes that contribute to human social development and behavior (Constantino et al., 2021, p. 367). Further, the processes that contribute to social deficits, communication difficulties, and repetitive behaviors are not independent but “are tightly intercorrelated not only in individuals with autism but throughout the general population” (Constantino et al., 2021, p. 368).
Environmental Factors
A variety of prenatal, perinatal, and postnatal environmental factors have also been investigated. Parental age is associated with an increased risk for ASD, with both individual and joint effects for older-aged mothers and fathers (Mandy & Lai, 2016). Prenatal exposure to valproate (a medication used for epilepsy, mood disorders, and migraines) is associated with an increased risk for ASD. Selective serotonin reuptake inhibitors (SSRIs) appear to be associated with a small increased risk. Toxic chemicals such as pesticides, phthalates, and traffic-related air pollutants are all associated with increased risk. Maternal metabolic profiles related to obesity and diabetes and the dysregulation of prenatal hormonal and immune systems increase the risk. Vitamin B9 (folate) is a prenatal protective factor (Mandy & Lai, 2016).
Perinatal risks include low birth weight, birth difficulties, and hypoxia. Each of these are nonspecific risks and are associated with an increased prevalence of a wide range of neurodevelopmental conditions (Carlsson et al., 2021; Mandy & Lai, 2016).
Postnatal risks include extreme environmental deprivation, such as that experienced by infants and toddlers in Romanian orphanages. Many children reared in institutional settings display what is sometimes called “quasi-autism.” One important difference between these children and others diagnosed with autism is the significant improvement
displayed after they are placed in high-quality foster homes or with families (Levin et al., 2015). Childhood vaccines and immunizations have also been repeatedly and convincingly ruled out as causes of autism (Mandy & Lai, 2016).

Assessment and Diagnosis

As with many other diagnoses, there have been important changes in the classification and diagnosis of autism spectrum disorder over time. The transition from the DSM-IV to DSM-5 in 2013 was such a time for children and adolescents previously diagnosed with autistic disorder, Asperger syndrome, or pervasive developmental disorder. The DSM-5 (continued in DSM-5-TR) revisions to the diagnostic criteria more meaningfully reflect current theory and research in ASD. The DSM-5 and DSM-5-TR revisions have been relevant to youth, families, teachers, and mental health professionals as they strive to understand particular children and their particular needs. As we appreciate the tremendous variability in this spectrum, we are ultimately responsible for understanding and treating the child, not their diagnostic label.
The first consideration in assessment is whether the core symptoms related to social and communication deficits and repetitive behaviors are present and the degree of impairment associated with these deficits. Given that complex diagnoses require complex assessments, interdisciplinary teams that include medical, psychological, speech and language, and other professionals provide the most effective evaluations. Brief screening measures as a part of well-child visits to general practitioners and pediatricians are now standard. The American Academy of Pediatrics calls for screening for autism spectrum disorders as part of well-child checkups at 18 and 24 months of age, with appropriate referrals when necessary (Hyman et al., 2020). In addition to the screening that takes place in medical settings, screening tools that are relatively brief, low cost, and able to be implemented by paraprofessionals expands access to care in low- and middle­income countries and non-English speaking countries (Fletcher-Watson et al., 2017; Marlow et al., 2019).
Because early identification is necessary for early intervention that, in turn, contributes to optimal outcomes, early screening using a range of methods is an emphasis for many clinical researchers. Promising examples of these efforts include the use of detailed parent interviews at 12 months, brain imaging of higher-likelihood infants, and the use of eye tracking data to identify ASD in very young children (Clairmont et al., 2022; Meera et al., 2021; Wen et al., 2022).
These efforts at early identification are in contrast to prior watch-and-wait practices when a very young child’s presentation does not yet meet the set of diagnostic criteria. For example, “two-year-olds with emerging neurodevelopmental disorders struggle to communicate effectively, and their communication and behavior restricts their opportunities to learn and develop. This impacts their
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Assessment and Diagnosis 127
2000 2002 2004 2006 2008 20122010 2014
1,000
Students (in thousands)
Intellectual
parents, who find their behavior perplexing and challenging to manage” (Constantino et al., 2021, p. 380). Clinical services for children and their parents are likely to be useful even before a diagnosis is made.
Interviews, Questionnaires, and Rating Scales
Parent interviews are often the source of very useful information, including information about early develop­ment, medical history, and family background. A careful history involves much reliance on parent recall of past events, and retrospective data are sometimes unreliable. However, parental concerns must be taken very seriously because “parents usually are correct in their concerns about their child’s development” (Filipek et al., 1999, p. 450; italics in original). Further, “parents rarely complain of social delays or problems, so any and all such concerns should be immediately investigated” (Filipek et al., 1999, p. 452). In addition to parent interviews, the use of flexible or adapted interviews, questionnaires, narratives, diaries, and varied communication options—language, signing and gestures, writing, and images—allow autistic individuals to participate in their own care (Tesfaye et al., 2019). These first-person perspectives are a valuable addition to assessment, diagnosis, and treatment planning.
Several parent-oriented diagnostic questionnaires are available as well, including t he Modif ied Checklist for Autism in Toddlers (M-CHAT) and the Autism Behavior Checklist (ABC) (Campi et al., 2020). The Autism Diagnostic Observation Schedule (ADOS-2), a semi-structured, standardized assessment of social interaction, play, and imaginative use of objects, and the Autism Diagnostic Interview-Revised (ADI-R), a structured interview, are
widely used in both research and clinical contexts (the ADOS-2 in particular) (Lebersfeld et al., 2021).
Assessment of intellectual functioning and communi­cation skills are key components of any comprehensive assessment of ASD (Klinger et al., 2018; Paul & Wilson,
2018). The diagnosis of intellectual developmental disorder requires special attention because some children are best diagnosed with intellectual developmental disorder alone, autism spectrum disorder alone, or both. Keep in mind that many earlier accounts of autistic individuals included intellectual delays or disability as part of the clinical presentation. With comorbidity rates of 33%, we no longer assume that autistic youth will also be diagnosed with IDD. Historical trends, in fact, reveal significant shifts in the prevalence of intellectual disability and autism in students receiving special education services in the United States (Thurm et al., 2019, refer to Figure 7.7).
Sociocultural Factors and Adult Diagnoses
Although standardized assessments work well across cultures, SES backgrounds, and populations, it is important to address potential issues related to clinical presentation and the timing of diagnosis (Rosen et al., 2021). Although prevalence rates are similar across racial and ethnic groups, Black, Hispanic, and Asian children in the US are diagnosed later than White children, as are children from low-income families (Lord et al., 2018). The majority of children in low- and middle-income countries who meet the diagnostic criteria for ASD are undiagnosed (Rosen et al., 2021). Young children who are girls and who do not exhibit language delays are diagnosed later (Lord et al., 2018).
Figure 7.7 Changing trends in special education services provided to students with intellectual disability versus students with autism
Source: Thurm, Farmer, Salzman, Lord, & Bishop (2019). State of the field: Differentiating intellectual disability from autism spectrum disorder.
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900 800 700 600 500 400 300 200 100
Austim
Disability
0
128 Chapter 7 Autism Spectrum Disorder
The diagnosis of ASD in adulthood is increasingly common. Many adults seek an ASD assessment after a child is diagnosed. Others have concerns related to ongoing social and employment difficulties. The lack of earlier awareness and/or prior access to assessment requires attention. In addition, the complex mental health needs of adults with a new diagnosis should be addressed (Huang et al., 2020). Adult versions of ASD interviews are available and have empirical support (Mandy et al., 2018).

Intervention

Think about the clinical picture of autism spectrum disorder and how important it is to make the right treatment decisions. Now consider how parents and teachers of children with autism must feel as they consider the multitude of treatment options, some offering slow and steady progress and others promising miraculous improvements. Information about treatments is widely available. Mainstream media reports related to autism include information about empirically supported treatments, ineffective treatments, and potentially harmful treatments (Schreck et al., 2013). Parents often seek information and support from other parents on social media (Pickard & Ingersoll, 2015). Mental health professionals must work with parents to make informed, ethical decisions about intervention for their particular child, addressing concerns about cost, time, and inaccurate assumptions about evidence-based treatments.
Although concern about autism spectrum disorder is high in many countries, we also must keep in mind the impact of culture and ethnicity on attitudes about autism and interventions. We also note that avail ability and acc ess to high­quality services is limited by socioeconomic and demographic factors and in other countries with fewer resources (Divan et al., 2021; Lord et al., 2018). Disseminating information about effective treatments, scaling up services, and training paraprofessionals to deliver high-quality treatments to diverse groups of children require the collaboration of researchers, clinicians, parents, governments, and agencies.
Researchers, clinicians, parents, and autistic individuals must all think carefully about outcomes (Lounds Taylor, 2017; Pellicano & den Houting, 2021; Vivanti & Messinger,
2021). What are optimal outcomes? What does meaningful improvement look like? Is it reasonable to work toward goals that include typical functioning across social-communication and behavior domains? In addition to interventions for autistic individuals, how do we address social attitudes and barriers that get in the way of development and positive outcomes? What societal accommodations can be provided to support autistic individuals across all levels of severity? And how do we include and prioritize the goals of the children, adolescents, and adults who are diagnosed with autism spectrum disorder?
One final point: Sociocultural factors influence the accessibility and quality of autism interventions. To improve access and increase positive connections with parents and families, outreach materials, intervention design and
implementation, and school and family resources need to be explained in multiple languages and in culturally respectful ways (Chlebowski et al., 2018; Kuhn et al., 2020; Stahmer et al., 2019).
Prevention Efforts
With the identification of an increased risk or high likelihood of autism for later-born children in families with an autistic child, prevention efforts or pre-symptomatic interventions are the focus of research and clinical attention (Grzadzinski et al., 2021; refer to Figure 7.8). Pre-symptomatic interventions that take place between birth and 12-18 months of age raise a number of important questions: (1) How can improved outcomes in very high likelihood infants be promoted? (2) Is additional monitoring and screening what families want? (3) If intervention is initiated, what symptoms should be targeted? (4) How is treatment conceptualized and implemented to disrupt the cascading brain and behavior changes that lead to ASD impairments? (5) What are the ethical and social implications of early identification and intervention?
Given developmental cascade models, early interventions are implemented based on risk or likelihood and are timed to take advantage of maximum neuroplasticity. Pre­symptomatic interventions typically focus on basic social processes such as social engagement, attentional biases and joint attention, sensory regulation, motor skills, and social communication (Grzadzinski et al., 2021; Klin et al., 2020). Caregivers are coached to identify, respond to, and scaffold these social processes over early development. Caregiver behaviors and interactions are the focus of interventions not because they are doing something wrong but because their children require more than typical care.
It is essential to consider the ethics of neuroscience research into early autism and pre-symptomatic interventions in the context of relationships between children, parents, and investigators (Fletcher-Watson et al., 2017; Manzini et al., 2021). Because the prediction of ASD is probabilistic rather than deterministic, how are decisions about possible interventions made in the presence of, for example, biomarkers revealed by brain imaging (which may or may not lead to later ASD)? Are pre-symptomatic interventions designed to move a high likelihood child closer to a typical presentation or outcome, decrease later distress and disability, and/or identify alternative positive developmental pathways by increasing compensatory strategies?
In addition, in baby sibling studies, the research and clinical attention is on the younger child (who may or may not develop autism) and not on the older child already diagnosed with autism. How does this pattern influence family dynamics? We also need to pay attention to parents’ mental health, their sociocultural milieu, and support systems. We also must pay attention to the gap between research and practice. Community-based early interventions attached to universities or hospitals have better outcomes than those delivered in other settings (Nahmias et al., 2019).
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Figure 7.8 Conceptual framework for pre-symptomatic intervention
Pre-Symptomatic
Identication of VHL
Infants
• Brain Features (MRI/EEG)
• Genetics/Familial History
• Atypical Behaviors
• Eye Tracking
Sensorimotor & Attention Problems Altered Experience Dependent Neuronal Development
Symptom Emergence and Consolidation
Intervention 129
Clinical Diagnosis
of ASD
6–18 months oldConception-6 months old
Pre-Symptomatic Intervention Window
Source: Grzadzinski et al. (2021). Pre-symptomatic intervention for autism spectrum disorder (ASD): Defining a research agenda.
Pharmacological Treatment
Given the evidence for genetic and biological factors in autism spectrum disorder, it is reasonable to examine pharmac ological i nterventions. For the most part , medications are not effective in ameliorating the core symptoms of ASD. A limited number of brain-behavior targets, including the neurotransmitter and neuromodulatory systems, have been investigated, but additional data is needed before widespread use by autistic individuals (Green & Garg, 2018).
Medications are more frequently prescribed to address comorbid conditions and difficult behaviors such as irritability and agitation (Lord et al., 2018). There is also the use of ADHD medications for autistic individuals with ADHD, but they are not as effective and have more side effects than in non-autistic individuals with ADHD (Lord et al., 2018).
Psychological Treatment and Support
Psychological treatments for autism spectrum disorder have been the focus of theory, research, and controversy. For decades, applied behavior analysis (ABA), developed by Ivar Lovaas (Lovaas, 2003), was viewed as the most effective treatment for more severe forms of autism with the most empirical support (Leaf et al., 2021). ABA is an intensive behavioral approach, with high levels of control and direction of children and their environments. The approach begins as early as possible and typically involves more than 40 hours of intervention per week for two or
more years. The focus is first on decreasing negative behaviors that interfere with social communication and then on increasing language and peer interaction. ABA is based on the discrete trial format, with a specific single behavior presented to the child by the therapist (such as looking at the therapist’s eyes or engaging in face-to-face interaction) and then an immediate reward for response and imitation. Over time, complex behaviors are built from simple ones.
More recently, there has been a rethinking of ABA’s methods and goals. Autistic children, for example, are not passive recipients of interventions. Discrete trial learning is understood as artificial and not always generalizable to real­world settings. The directiveness of therapists and parents is often viewed as counterproductive; instead, adult sensitivity and responsiveness to children’s cues is encouraged. Instead of the behaviorist focus on “learning rules that apply across a continuum from young mice to old men,” there is an appreciation for alternative learning models and opportunities (Mottron, 2017, p. 817). Side-by-side learning (instead of face-to-face), or “lateral tutorship,” is often better tolerated by autistic youth. Overa ll, there is a shif t to more developmentally­informed treatments for autistic youth, with “affectively rich interactions, self-driven goals, and in response to the natural contingencies of their self-initiated behavior” (Vivanti & Messinger, 2021, p. 4313). These naturalistic behavioral
developmental interventions (NBDIs) include the Early
Denver Start Model and the Treatment and Education of Autistic (and related) Communication-Handicapped
18–36 months old
Post-Symptomatic Intervention Window
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130 Chapter 7 Autism Spectrum Disorder
Children (TEACCH) model (refer to Box 7.2). NBDIs are usually less intensive that ABA but more so than many of the parent-mediated interventions.
Early parent-mediated interventions are relatively low intensity interventions that can lead to improvements in children’s social behavior and communication. Parents are coached to respond to children’s initiation of activity, notice opportunities for joint attention, reinforce the child’s thoughts and communications, and create shared play experiences (e.g., sitting side by side with a child who is engaged in a favorite activity), with a goal of increasing reciprocal social interactions. These interactions are the basis for meaningful social learning (Lord et al., 2018). Data suggest that children and parents do best when parents receive direct coaching with video feedback, increasing parent-child synchrony and improving later social and communication outcomes (Green & Garg, 2018; Klin et al., 2020). We emphasize again that parent coaching is not done to correct bad parenting but to support parents as they provide care for vulnerable infants and toddlers. We also emphasize that parents may provide exemplary care and their children may still develop a severe clinical presentations (Klin et al., 2020).
Are there ways to intervene that are based on developmental principles but also accommodate autistic children’s preferences and skills and that take advantage of their own developmental trajectories? Many autistic children may be able to participate in the co-construction of treatment goals (Green & Garg, 2018). Given that autistic children clearly learn on their own, what learning mechanisms can be identified and built upon? Language interventions, for example, provide an important perspective. One assumption in language interventions is that simple behaviors precede more complex behaviors. That sequence, however, may be different for many autistic children. Some autistic children, for example, read before they speak. Indeed, “autistic children mostly learn language in a non-communicative manner” (Mottron, 2017, p. 819). If one of the goals of intervention is to improve social communication, and autistic children prefer written communication to verbal communication, then therapists may want to leverage reading skills by using videos with subtitles and providing information to autistic children using screens. Therapists may also want to include sign language to facilitate communication.
The language intervention example demonstrates one way in which parents, teachers, and therapists might build on an autistic youth’s cognitive strengths. Another way that interventions might be usefully updated involves re-eva luat ing attitudes toward R BBs. Inter ventions t hat focus on reducing self-stimulatory behavior, or stimming, might be reconsidered. Although stimming is often noticeable and sometimes stigmatized, some stimming appears adaptive to autistic individuals (Pellicano & den Houting, 2021). Instead of minimizing or ignoring restricted interests, therapists might work toward better social communication
skills by recognizing the interests or expertise of each autistic child. “Just as non-autistic children are exposed to situations and opportunities that will help them to develop their intelligence,” therapists should provide “objects that shine, rotate, or can be lined up” (Mottron, 2017, p. 822). Interventions to restrict or eliminate behaviors should be used only when safety is a concern (such as wandering or self-injurious behaviors).
Another approach to the treatment of various autism symptoms involves the use of technology. Computers, tablets, and smart phones are valuable treatment resources. Apps that prompt children and adolescents with social scripts or computer-based, serious game interventions that use components such as strong storylines or rewards to enhance learning or the generalization of learning are increasingly used as adjuncts to more traditional treatments (Diener et al., 2016; Whyte et al., 2015). Like non-autistic youth, autistic youth also use various technologies for recreation (Laurie et al., 2019).
Other treatment considerations involve addressing autism-related difficulties. These may include sleep interventions (McLay et al., 2021) or interventions specifically focused on comorbid disorders such as anxiety, depression, ADHD, or conduct problems. Across all interventions, a therapeutic alliance must be established and maintained. The most commonly used treatments for autistic youth, such as cognitive behavioral therapy for anxiety, are often adapted with some modifications to content and implementation (Dickson et al., 2021; Lord et al., 2018). There is also increasing attention to mental health concerns that are not diagnosis-related, such as the difficulties experienced by autistic individuals who attempt to camouflage their condition (Manzini et al., 2021). It is imperative to remember that many interventions for autistic youth may need to be substantially altered to address the needs of the individuals with the most severe symptoms and the most pervasive impairment; these individuals may require more intensive, more comprehensive, and ongoing treatments (Vivanti & Messinger, 2021).
School-Based Programs
School-based services are limited by time, resources, and the availability of trained personnel. All children who struggle, both with autism spectrum disorder and without, should be supported in their educational goals. Many have suggested that school services be decoupled from DSM diagnoses so the child’s particular learning, social, and behavioral problems guide eligibility and individual planning. The most common school services for children with ASD are cla ssroom placement/inclusion, supportive services (such as occupational therapy, speech and language therapy, and social skills interventions), and special education designation (Spaulding et al.,
2016).
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Intervention 131
There have been significant funds invested in the education of children with ASD, and the gap between research on interventions that work and actual educational practices has yet to be bridged (Parsons et al., 2013). The Treatment and Education of Autistic and (related) Communication-Handicapped Children (TEACCH) model is a comprehensive intervention with convincing empirical support (Mesibov, 1994, 1997; Schopler, 1998). The intervention has seven components: (1) improved adaptation, (2) parent collaboration, (3) individualized assessment, (4) teaching structure, (5) emphasis on skills, (6) usefulness of cognitive and behavior therapy, and (7) a generalist training model (refer to Box 7.2).
About 40% of youth with ASD who qualify for special education spend 80% or more of their time in mainstream classrooms. That means approximately 60% of youth with ASD are only partially included (Odom et al., 2021). There are many interventions that explicitly target the acquisition of academic skills in both inclusive and self­contained classrooms. Communication interventions are common. There are also group interventions that focus on social engagement and peer interactions. Technology­assisted instruction and intervention is increasingly used with positive outcomes (Odom et al., 2021). Encouraging children’s participation in popular peer activities (such as sports, music, or art) may be an important strategy that promotes positive social relationships in elementary school (Rotheram-Fuller et al., 2010). For youth who struggle with behavioral difficulties, additional supports may be required.
As described earlier in the chapter, significant efforts may be made so school settings are less challenging to navigate for youth with autism. Teachers and staff who
are knowledgeable and skilled about autism-related practices are more likely to have positive attitudes about inclusion and about their ability to provide high-quality educational experiences (Odom et al., 2021; Melgarejo et al., 2020). The inclusion of toddlers and young children with autism into mainstream daycare and primary classrooms may also lead to decreasing stigma and increasing tolerance in young children without autism, benefitting all children as they progress through their school years (Mottron, 2017).
Long-Term Treatment and Support
Autistic children become autistic adolescents who become autistic adults. With increasing age, intervention strategies and goals are likely to be revised, with specific treatments and supports designed for adolescents and adults (Lord et al., 2018; Odom et al., 2021). The transition from high school to adulthood may be difficult if services are not available or in place. Opportunities for employment, volunteer activities, and community involvement contribute to positive pathways. Parents and professionals may need to be proactive to access services and provide additional support. Residential options and vocational training are necessary components of many developmentally appropriate plans. These are increasingly paired with available technologies that build on individual strengths to facilitate personal, social, and vocational skills and maximize each individual’s potential and well-being (Lounds Taylor et al., 2022; Scott et al., 2019).
Box 7.2 Clinical Perspectives
The TEACCH Model of Intervention
The TEACCH program, originally developed by Eric Schopler and colleagues at the University of North Carolina in the 1970s, is a broad-based treatment program for autism that has become a major intervention approach used in communities throughout the world (Schopler et al., 1995). Along with other Comprehensive Treatment Models (CTMs), TEACCH has been found to be especially effective as an integrated part of the school curriculum (Mesibov & Hawley, 2018). The TEACCH program is distinctive in its emphasis on careful individual assessment; its structured teaching program is based on that assessment and integrated into all aspects of the day-to-day life of children with autism spectrum disorder. The structured teaching plan includes careful organization of the physical environment and daily schedule as well as clear expectations and rules. In addition, this approach advocates for increased respect for what is called the “culture of autism.” Understanding this culture involves recognizing the unique ways that individuals with autism view
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their environment and experience the physical and social world. Interventions, then, are designed to be consistent with this sensibility. Further, methods that emphasiz e the relative strengths of autism—such as strong memory, good visual processing skills, and recognition of details—are utilized and promoted wherever possible. These treatment principles are then integrated across systems and settings, including home and school, through comprehensive services such as social skills training, vocational training, and parent counseling and training. The TEACCH model has been adapted for use with ASD populations from early childhood through adulthood, across cultural contexts, across levels of disorder severity, and in rural and urban settings (Coleman et al., 2021; Ichikawa et al., 2013; Van Bourgondien & Coonrod, 2013; Zeng et al., 2021). Additionally, many of the principles and techniques of TEACCH, including an emphasis on a predictable schedule and the use of visual cues, have been effectively adapted for use in general education.
132 Chapter 7 Autism Spectrum Disorder
Key Terms
Autism spectrum disorder (ASD) (p. 110) Neurodiversity (p. 110) Social cognition (p. 111) Joint attention (p. 111) Theory of mind (ToM) (p. 111)
Chapter Summary
Autism spectrum disorder (ASD) is a broad term that is used in a variety of contexts, reflecting compromised development in social functioning and communication as well as restricted, repetitive behaviors and fixated interests.
Social cognition refers to the many ways that people think about themselves, others, and their social worlds. Children with ASD display atypical social cognition.
Theory of mind (ToM) refers to the ability to recognize and represent the mental states and perspectives of others. It is an example of an important psychological process that is compromised in many individuals with ASD.
Affective social competence—the coordination of emotional perception, experience, and communication— is another developmental achievement that is compromised in youth with ASD.
There is a wide variety of clinical presentations of ASD and equally varied developmental pathways and outcomes.
Dimensional approaches to ASD are the focus of research and clinical attention. The study of the broad autism phenotype is an example of the dimensional approach.
Affective social competence (p. 112) Social and communication deficits (p. 113) Restricted, repetitive behaviors (p. 115) Fixated interests (p. 116) Broad autism phenotype (p. 117) Applied behavior analysis (p. 129) Naturalistic behavioral developmental interventions (p. 129)
Multiple large-scale studies estimate the prevalence rate of ASD at 1%. The male:female ratio is approximately 4:1.
The core symptoms of ASD are generally evident by two years of age.
Autism spectrum disorder generally presents lifelong challenges. Symptom severity, the presence of support and accommodation, and individual differences contribute to varied outcomes.
ASD is a highly heritable condition. Hundreds of genetic variants and multiple physiological processes contribute to the development of ASD.
Social and cognitive factors, such as atypical social motivation, contribute to developmental cascades that help explain the etiology and course of ASD. Several environmental factors increase the risk for ASD.
Early screening and diagnosis provide important opportunities for early intervention.
The varied clinical presentations of ASD require individualized and comprehensive intervention strategies. The most successful interventions are those that are delivered early and intensively across a variety of domains and settings.
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Maltreatment and Trauma­and Stressor-Related Disorders
Chapter Outline
8
Developmental Tasks and Challenges Related to Stress and Coping 134
Maltreatment 137
The Case of Wyatt
Trauma- and Stressor-Related Disorders 139
The Case of Simone
Box 8.1 Clinical Perspectives:
Disorder
Developmental Course 143
Maltreatment
Box 8.2 Emerging Science: Maltreatment and Depression
Developmental Trauma
Learning Objectives
1. Summarize the organization and development of the stress­response system.
2. Discuss several ways in which early adversity influences the stress-response system over time.
3. Summarize the current research on the development of coping.
4. Define maltreatment and discuss the consequences of maltreatment over time.
5. Compare and contrast the clinical presentations of acute stress disorder and posttraumatic stress disorder (PTSD) in children and adolescents.
6. Summarize the theory and research related to developmental pathways of youth who experience maltreatment.
The Case of Deion Trauma- and Stressor-Related Disorders
Etiology 149
Maltreatment Trauma- and Stressor-Related Disorders
Assessment and Diagnosis 151 Intervention 152
Treatment
Box 8.3 Children in Context: Trauma-Informed Pedagogies
and Classrooms Prevention
7. Summarize the theory and research related to developmental pathways for youth diagnosed with acute stress disorder and PTSD.
8. Evaluate the theory and research related to etiological factors for youth who experience maltreatment.
9. Evaluate the theory and research related to etiological factors for youth diagnosed with acute stress disorder and PTSD.
10. Summarize assessment and diagnostic methods and concerns for youth who experience maltreatment and for youth diagnosed with acute stress disorder and PTSD.
11. Integrate the information on interventions for youth who experience maltreatment.
12. Integrate the information on interventions for youth diagnosed with acute stress disorder and PTSD.
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133