DSM-V Changes for Autism Spectrum Disorder (ASD)
Implications for Diagnosis, Management, and Care Coordination for Children With ASDs
Sandra L. Lobar, PhD, APRN, PPCNP-BC
J Pediatr Health Care. 2016;30(4):359-365.
Abstract and Introduction
The purpose of this article is to highlight issues about diagnosis and management of autism spectrum disorders (ASDs) in all settings, along with care coordination for all children with ASDs. The article outlines differences between the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, 4th edition, revised (DSM-IV-TR) and the newer version (DSM-V) for ASDs. These changes may limit the eligibility of some children for services in school, leading to poorer social/academic outcomes, lower rates of employment, and decreased assistance in eventual independent living. Primary care providers identified a lack of knowledge regarding ASDs before the DSM-V was published, describing difficulty in making ASD diagnoses, recognizing early symptoms of developmental concern, and managing care. Care coordination is part of the role of the advanced practice nurse, and lack of understanding of ASD changes in the DSM-V may diminish the ability of advanced practice nurses to screen for ASDs and make the appropriate referrals.
The Centers for Disease Control and Prevention (CDC) continues to report alarming increases in the numbers of children across the United States who are diagnosed with autism spectrum disorder (ASD). It was estimated that 1 in 68 children were diagnosed with an ASD in 2010 (Baio, 2014), a 30% increase from 2008, when the incidence was 1 in 88, and a 60% increase from 2006, when the incidence was reported to be 1 in 110 children. Some authors have suggested that the "autism epidemic" has less to do with a true rise in prevalence than with greater awareness, clarification and/or expansion of the idea of what constitutes an ASD, overidentification of the disorder, and/or use of the ASD label to establish service eligibility (McPartland, Reichow, & Volkmar, 2012).
As a result of the increased incidence and concerns about overdiagnosis, in May 2013, new guidelines for identification of ASDs were introduced in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) by the American Psychiatric Association (APA). However, rather than increasing specificity for diagnosis and limiting overdiagnosis, these guidelines may only serve to decrease eligibility for services for some children who may previously have been considered to be on the autism spectrum and are still in need of services (Volkmar & McPartland, 2014).
Will, Barnfather, and Lesley (2013) stated that a primary care provider will encounter at least 11 children with ASD for every 1,000 children they see in their practice. A lack of understanding of the nuance of behaviors associated with an ASD and use of the new DSM-V criteria may lead to the failure of advanced practice nurses in primary care to fully identify children in need of intervention. The 126 nurse practitioners who were providers of primary care to pediatric patients younger than 18 years in the study by Will et al. (2013) described a significant lack of competency and barriers to providing care to children with ASDs. The purpose of this article is to highlight issues related to the new DSM V criteria that relate to the diagnosis and management of ASDs in all settings and to discuss care coordination for all children with ASDs, but especially for children previously considered to be higher functioning or having Asperger disorder (syndrome).
A Comparison of the DSM-IV-TR and DSM-V Criteria for Diagnosing ASDs
Prior to 2013, clinicians used the DSM-IV-TR as a primer for the diagnosis of ASDs. In that version of the manual, several disorders were seen as part of a group of pervasive developmental disorders (PDDs) that later became known as the autism spectrum of disorders. These disorders included autistic disorder, Asperger disorder, and general PDD. A number of criteria for ASD and specific categories have been altered for the DSM-V criteria (Volkmar & McPartland, 2014).
A major change from the DSM-IV-TR to the DSM-V was that the overarching umbrella term of PDD was changed for the DSM-V criteria. What was previously characterized in the DSM-IV-TR as an "umbrella" of PDDs with subcategories (APA, 2000) is now a broader concept of a "spectrum" of disorders. This change adds to the notion that ASDs are not discrete disorders under one umbrella term but are on a spectrum of similar disorders with varying presentations and severity of behavior. Concern about limitations in identifying the subcategories reliably was of concern to many diagnosticians, thus prompting this change (Volkmar & McPartland, 2014). With this change from categorical description of discrete disorders to the spectrum, diagnosticians were expected to view ASD as a continuum of mild to more severe symptoms (APA, 2013).
Many clinicians found that identifying persons with autism or ASD was difficult given the many variations in symptoms and behaviors, especially considering the complications brought about by the numerous comorbid conditions described for children considered to have ASDs, which occur at varying times and at different developmental levels for children (Levy, Mandell, & Schultz, 2009). This problem continues even after the introduction of the DSM-V, because the newer criteria mandate that symptoms be present from early childhood, even if the child does not have clear symptoms until social demands exceed his or her ability to respond to situations. Unfortunately, it is often difficult to identify or describe social inadequacy in early childhood, and although the criteria changes in the DSM-V encourage earlier diagnosis, these criteria may lack the specificity for higher functioning children (especially if they have comorbid disease) to be diagnosed even as they grow older.
The DSM includes core symptom domains and diagnostic features. A change from the DSM-IV-TR to the DSM-V was a reduction in the core symptom domains. The core symptom domains for ASD were reduced from the previous three to two: (1) impaired social communication and social interaction and (2) restricted, repetitive behaviors, interests, or activities (APA, 2013). Autistic disorder, Asperger syndrome, and pervasive developmental delay were consolidated into a single ASD classification as well. This change oversimplifies the core symptom identification, making it more difficult to determine just what behaviors may constitute an ASD and confusing providers. The description of the criteria does take the variability of functional impairment into consideration by warning of the effects of context such as environment and developmental stage. Behaviors indicative of these core symptoms may be present but may be difficult to discern in certain contexts, or the individual characteristics may be less obvious in certain environments or during certain developmental stages. Thus manifestations of the disorder are exceptionally varied.
The diagnostic features related to an ASD in the DSM-V have four major criteria: (a) continuous impairment in interaction and communication that are reciprocal and social in nature; (b) patterns of activities, interests, and behaviors that are restricted and repetitive; (c) symptoms that are persistent from early childhood; and (d) symptoms that interfere with everyday functioning. These criteria also include a requirement that characteristics of the individual's symptoms impede functioning, especially in social and occupational areas. In addition, social communication deficits should not be related to the individual's level of development. There should be an assessment of whether impairments to functioning exceed any problems expected based on developmental level (APA, 2013).
Children with characteristics associated with an ASD lack the ability to interact with others in positive ways, according to the DSM-V. At home, children with characteristics of an ASD may not do well with a lack of order or routine. These children often have problems with planning, organization, and coping, which cause difficulty in academic situations (APA, 2013).
Focus on the idea of functionality or the ability of the individual to function according to his or her own perception is a part of the DSM-V (APA, 2013). Age and environmental context affect the child's perception of the situation and the presentation of characteristics of ASDs. Learning for younger children who are not in school usually takes place through social interaction with peers in the playground or with parents at home. If the environmental context is not conducive to social interaction and enhancement of social communication, this may have an impact on behaviors and, in turn, the appropriate diagnosis.
The authors of the DSM-V have created the new diagnosis of social (pragmatic) communication disorder. This addition may confuse diagnosticians and prevent accurate diagnosis of children with a potential ASD. The diagnostic domains in social communication disorder may overlap with ASD under the determination of impaired verbal communication. It is unclear how severity is determined in these criteria because there is no way to show the effects of even what is considered mild problems with social communication. Children with impaired social communication could receive a diagnosis of social (pragmatic) communication disorder instead of a diagnosis of ASD (APA, 2013; Young & Rodi, 2013).
Diagnostic Sensitivity of the DSM-V for ASD
The DSM-V criteria have been tested in a number of clinical settings with mixed results. Huerta et al. (2012)) assessed previously collected data for symptoms of PPD under the newer DSM-V criteria for ASDs. They found that 91% of children with a previous diagnosis of PDD would retain their diagnosis under the newer DSM-V. However, other diagnosticians have found that the DSM-V has not been sensitive for symptoms of Asperger disorder, and other exploratory studies have demonstrated lower sensitivities for a diagnosis of ASD using the DSM-V criteria to identify children (Gibbs, Aldridge, Chandler, Witzlsperger, & Smith, 2012; McPartland et al., 2012).
It is not the wording or the inclusion/exclusion criteria that are of concern in making these diagnoses. What is of concern is that the diagnosis of an ASD is only made when all three criteria are met in the social-communication domain and at least two criteria are met from the behaviors domain (McPartland et al., 2012; Young & Rodi, 2013). In a study of diagnosis and changes in the DSM criteria, Young and Rodi found that 57% of 210 children already diagnosed with an ASD under the DSM-IV-TR would not qualify for diagnosis under the DSM-V. Thus these authors suggest that higher functioning individuals would not meet the DSM-V criteria for an ASD.
High-functioning Children With ASD (Formerly Known as Asperger Disorder)
Although the ASD definition in the DSM-V does include disorders previously referred to as autism, high-functioning autism, pervasive developmental delay, pervasive developmental delay not otherwise specified, and Asperger disorder, these diagnoses are much less clear in the DSM-V (APA, 2013). In the current DSM-V criteria for ASD diagnosis, the diagnostic criteria tends toward what was once referred to as "classic autistic disease," in which children may have obvious motor signs of an ASD, lower cognition, and/or poor to nonverbal responses. The DSM-V criteria, therefore, may raise the "diagnosis threshold" or proverbial diagnostic "bar" for higher functioning, less cognitively impaired children, especially children with the constellation of behaviors and symptoms formerly classified as Asperger syndrome (McPartland et al., 2012). Concerns have been raised that as a result of these new guidelines many children who once were diagnosed with an ASD may no longer be considered to have an ASD or that they may fail to be diagnosed at all (Gibbs et al., 2012).
Asperger disorder was characterized in the DSM-IV-TR as impairment in social interaction (severe and sustained) causing problems in areas of functioning in social and occupational domains. Differences in autism disorder and Asperger disorder in the DSM-IV-TR reflected the emphasis on the social aspects of communication such as reciprocal social interaction (APA, 2000) rather than an emphasis on the severity of other diagnostic symptoms such as repetitive behaviors and/or restrictive interests.
Social communication has been described as a major area of concern for children with Asperger disorder, defined as a "higher functioning" type of ASD. Asperger disorder includes persons with early or age-appropriate development of speech; however, the reciprocal social interaction in body movement and use of speech is where persons with Asperger disorder have the most difficulty and fit for the previous DSM-IV-TR criteria for a diagnosis of an ASD (Lobar, Fritts, Arbide, & Russel, 2008). Pertinent characteristics of Asperger syndrome include perceptual, emotional, conceptual, and memorization issues (Jordan, 2005). Asperger syndrome was initially described to include verbal precocity and motor clumsiness and was indicated by a positive family history (McPartland et al., 2012).
Many versions of the defining characteristics of Asperger syndrome have existed since the original definition of the syndrome was proposed by Asperger in 1944. Now it is included in the DSM-V, on the spectrum of ASD, but with limited description (APA, 2013; Volkmar & McPartland, 2014). The diagnosis of Asperger syndrome previously caused problems in the completion of research studies that were performed to clarify diagnosis and determine the efficacy of interventions. Persons with Asperger syndrome and pervasive developmental delay (also considered "higher functioning") have many of the same problems that grossly affect all areas of daily living, especially in the school setting (Teitelbaum et al., 2004).
Barriers to Diagnosis and Management After Implementation of the DSM-V
Lobar, Fritts, Arbide, and Russell (2008) discussed difficulties in diagnosing Asperger disorder and the consequences of being marginalized in the academic setting because the indicators are not recognized by many primary care providers. These authors highlighted the descriptors and indicators that characterize children with Asperger syndrome. Behaviorally, children with Asperger disorder (or syndrome) tend to be clumsy or dyspraxic, hyperactive, impulsive, and lacking in judgment. Symptomatically, they may have pedantic or oddly toned speech that begins in the preschool years. They demonstrate difficulty with sharing in preschool, reciprocal speech, maintenance of peer relationships, poor use of personal/social space, and unusual sensations and attentional states, all of which affect their behavior and success in all settings (school and social). Often shunned or bullied, their self-esteem is damaged, and they underachieve in school. Excessive exposure to hypersensitivities such as sound that may be innocuous to the neurotypical child can trigger overarousal, severe agitation, and panic (APA, 2000; Lobar et al., 2008).
Diagnosis and Management of ASD in the Medical Home by Primary Care Providers
Liptak, Stuart, and Auringer (2006) studied a national sample of 80 children diagnosed with ASD across the United States. Surveys from the Medical Expenditure Panel and National (Hospital) Ambulatory Medical Care were used to compare children diagnosed with ASD (according to the DSM-IV-TR) with the general population in pediatric settings. Children with ASD were found to have more medications prescribed and more outpatient visits, and they spent more time with the physician provider than did other children. The data suggested that children with an ASD incur a significant financial burden as well, with annual expenses for children with ASD reported at an average of $6,132 compared with "other children" with an average expenditure of $860.
As part of the umbrella of disorders classified under the previous criteria, the DSM-IV-TR, children with Asperger disorder and pervasive developmental delay qualified for services under the Individuals with Disabilities Education Act. Diagnosticians (ranging from psychologists, psychiatrists, neurologists, and other health care practitioners) used a variety of measures and observations to ascertain which of the supposedly "discrete" disorders under the ASD umbrella that a child's complex symptoms might indicate. Parents must be involved in evaluation and coordination of services based on these diagnoses (Florida Department of Education, Division of Public Schools, Bureau of Exceptional Education and Student Services (BEESS), 2012; Feinberg & Ladew, 2011).
Diagnostic Assessments Beyond the DSM
Volkmar and McPartland (2014) noted that assessment includes much more than just the DSM criteria. Screening assessments and instruments have been used in addition to the DSM criteria with varied effects because of the nature of the instruments. Some of these instruments and assessments rate the deviation from the norm, whereas others rate the severity of symptoms within the diagnostic category. All of these issues may complicate the purpose of the diagnosis and the interventions used to help children and their families with services.
Most symptom checklists are completed by parents. Many parents will not be able to identify reciprocal and social symptoms accurately at younger ages when developmental levels may be the cause for many such behaviors. For example, 2- to 3-year-olds displaying anger, temper tantrums, and obstinate behaviors may not be seen by parents as having problems in interaction. Children who point to objects rather than ask for them at ages 3 to 5 years may just be replaying a parent's question as to what they desire instead of exhibiting lack of speech.
Diagnostic and screening tools such as the Modified Checklist for Autism in Toddlers may still be used to determine the possibility of the disorders; however, it is recommended that multiple instruments specific to the symptoms and context of the behaviors be used. Interviews with caregivers, questionnaires about behaviors, and observations by primary care providers in different contexts will increase the reliability of diagnoses over time (APA, 2013). Problems with intellectual abilities may obscure the diagnosis because there are other diagnoses more appropriate to this category, such as intellectual disability.
Care Coordination and Educational Management and Services for High-functioning Children With ASD
Hyman and Johnson (2012) noted that children with ASDs and their families would receive more continuity of care, increased screening, and developmental surveillance, as well as better management of care (including needed services), in the medical home (a primary pediatric setting). The medical home concept was developed by the Maternal Child Health Bureau in collaboration with the American Academy of Pediatrics (AAP) to promote family centered, continuous and comprehensive, compassionate and culturally effected care (National Center for Medical Home Implementation, American Academy of Pediatrics, n.d..). Additionally, the medical home has been identified as a possible partnership between families and providers that supports access to and use of needed services and community support necessitated by the child's care needs (Sadof & Nazarian, 2007). Unfortunately, this is not currently the case. Diagnosis and management of ASDs in the medical home would require an understanding of the changes in diagnostic criteria, in-depth knowledge of developmental differences found in children with ASDs, and the ability of the provider to help the family coordinate care with specialty services (Johnson, Myers, & The Council on Children with Disabilities, 2007).
Providers in primary medical home care include pediatricians, nurse practitioners, and/or physician assistants with varied training, and it is not known how this may affect the actual diagnosis of ASDs and level of severity (Hyman & Johnson, 2012). The health care provider in the medical home comes into contact with parents more often than other providers of specialty care and should be the first to hear parental concerns. Lobar (2014)) found that parents of children diagnosed with an ASD had many concerns about service access and the appropriateness of services, especially in the school setting.
Carbone, Behl, Azor, and Murphy (2009)) used focus groups to compare parents' and physicians' perceptions of the medical home for children suspected of having an ASD and those already diagnosed. They found that participants, both parents and pediatricians, described the medical home as "lacking" in meeting the needs of children with ASDs. Parents stated that they did not feel that pediatricians responded to their concerns about child development in a timely fashion and that care did not meet the goals of the medical home (i.e., care that is family-centered, comprehensive, and coordinated). Pediatricians talked about a lack of time, training, and resources to implement the goals of the medical home.
Specialty services are often provided in the school while children are in regular or special education classes when they have a diagnostic label as having an ASD. Bellando and Lopez (2009) suggested that school nurses are very important to the process of school intervention for children with ASDs in that they might assist in early identification and interventions for health issues. These authors also suggested that the school nurse is responsible for the individual health record, noting any health concerns and interventions for children in school and the Individualized Educational Plan (IEP). These authors also noted that the school nurse should be a member of a team effort for intervention and facilitation of IEP goals. No studies were found in a review of literature related to primary care providers, diagnosis of ASDs, care coordination, and school communication; however, a majority of the services needed by school-aged children are coordinated by the school if the child is in a public educational institution (Center for Parent Information and Resources, 2007; Feinberg & Ladew, 2011; Florida Department of Education, Division of Public Schools, BEESS, 2012).
The AAP has defined care coordination as happening when a plan of care is implemented by a variety of service providers in an organized way (AAP, 2005). The providers responsible for care coordination have a role in education, communication, and resource provision for children and families (AAP, 2005). Benefits of care coordination should include reduced school absenteeism, limited visits to emergency departments, access to resources, and increasing skills in self-management and transitions for families and their children (McAllister, Presler, & Cooley, 2007).
Care coordination must include communication with the school. Some students, especially those with an ASD, may not be part of the general education but may require special education programs because of learning disabilities or exceptional abilities. Children with symptoms of ASD (including those who are considered "higher functioning") usually require assistive educational services and an IEP. The IEP is a tangible plan that outlines the special education and services needed by these children individually and, by law, is provided free of charge (Feinberg & Ladew, 2011).
An IEP must be developed after determination of eligibility based on procedures such as aptitude and achievement tests, parent input, and teacher recommendation that confirm a learning disability. Specific learning disabilities include inadequate performance in oral expression, listening comprehension, written expression, basic reading or reading fluency skills, reading comprehension, mathematics calculation, and problem solving (Center for Parent Information and Resources, 2007). Learning disabilities often stem from diagnoses such as ASDs or other developmental disabilities.
The IEP is developed, reviewed, and revised in a meeting with the IEP team composed of the parent, regular teacher, special education teacher, a school representative, and/or other professionals such as a psychologist, speech therapist, or occupational therapist, according to the child's needs. The statement must include present levels of achievement, how the disabilities affect learning, specific measurable goals, progress toward goals, periodic reports, participation with nondisabled children, and accommodations for assessments (Center for Parent Information and Resources, 2007). Besides being a legal requirement, the IEP should be an effective tool when developed and used correctly to meet the special needs of children with disabilities. However, as with any other intervention, efficacy depends on inherent inaccuracies that may be caused by inadequate assessment, unrealistic goals, and other causes such as limited use or misuse of the IEP. Periodic reports and revision of the IEP should help assess and address any weaknesses.
The Nurse Practitioner, School, and Children With ASDs
Falkmer, Anderson, Falkmer, and Horlin (2013) noted that diagnosing an ASD is time consuming, requiring a multidisciplinary approach to assessing all information such as development and behavioral history. The primary care setting in the medical home is ill equipped for such an approach. One way to alleviate this problem is to use the school setting as an initial point of evaluation, referral, and/or care coordination. School psychologists can be helpful in this setting as part of the team of professionals to evaluate the child not only for whether they have an ASD but what the child's educational needs may be. School nurse practitioners have been identified as key personnel in the school setting to facilitate care coordination in diagnosis, referral, and management of needs. Setting priorities for an individual health plan and/or participating in the development of goals for the IEP would help the school nurse practitioner intervene with students and families to promote better care coordination because they are involved in the school and have knowledge of the child's needs (Bellando & Lopez, 2009).
Mossman Steiner, Goldsmith, Snow, and Chawarska (2012) noted the difficulties of completing a structured assessment with children who have ASDs. They stated that the most significant factor in influencing the outcomes of an ASD screening is where the diagnostic process takes place. According to this group, if a child is assessed in an environment that accommodates his or her attentional and learning style and motivational factors, even a child with the most challenging behavioral traits can complete a standard assessment. The DSM-5 explicitly states "symptoms may not be fully manifest until social demand exceeds capacity" for the child with an ASD (APA, 2013; Coury et al., 2014, p. 29). The goal of both the DSM-5 and the academic team is to determine the severity of the child's needs in order to identify the interventions most likely to optimize social competence and minimize hypersensitivities.
White, Scahill, Klin, Koenig, & Volkmar (2007) studied child characteristics associated with educational placement and service use for children identified as high-functioning and on the autistic spectrum of disorders. They found that lower cognitive ability and communication skills were associated with the types of placement in special education and mainstreaming and that most of the children in this study stayed the same placement in which they began in school in the first grade. Students did receive special services in school with emphasis placed on their cognitive ability rather than any social problem that may interfere with schooling, academic success, and transitions to middle school, high school, and beyond.
Changes in the DSM-V have altered the landscape of diagnosis and intervention for children who may have qualified as having an ASD under the previous DSM-IV-TR criteria. Children previously diagnosed with Asperger syndrome or pervasive developmental delay may not meet criteria for services in school under the DSM-V, impacting both children and their parents in managing their symptoms. Additionally, the push to diagnose these children in a medical home setting has met with certain problems related to continuity of services and care coordination. The school system has a major role in determining the types of interventions that are implemented for children with a potential diagnosis of ASD. Health care professionals in communication with the school system may be in the best position to assess children and to offer their services in care coordination, thus leading to better academic outcomes, employment opportunities, and eventually greater independent living.
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Conflicts of interest
None to report.
Many thanks to the master's students who helped with a review of the literature.
J Pediatr Health Care. 2016;30(4):359-365. © 2016 Mosby, Inc.