Defining Autism Spectrum Disorders

Abstract

A consensus has emerged that autistic disorder and related disorders are now thought of as a spectrum disorder, labeled as ASD. While all children with diagnoses under the ASD umbrella demonstrate the same core deficits, these symptoms are manifested in a wide variety of ways, ranging from those who are very severely affected with many characteristics to those who show only mild effects with fewer characteristics or who remain nearly normal (Fisher, 2005). For example, the level of intellectual function can range from profound mental retardation through the superior range on conventional IQ tests, although about 40% of children have some level of retardation. This concept of ASD and the disabilities under this umbrella as a spectrum disorder has been useful in facilitating the diagnosis of younger and younger children and in providing appropriate educational approaches and parental interventions geared to the individual behavioral and developmental manifestations seen in the individual child (Rutter, 2005; Wing & Potter,2002). The CDC (2007), in partnership with the American Academy of Pediatrics (AAP) and the Autism Society have organized the Learn the Signs, Act Early campaign to assist parents and providers. Developmental charts and videos are available on the Web site at http://www.cdc.gov/ncbddd/autism/screening.htm. Nurses who work with children in a variety of settings have a unique opportunity to meet this mandate. Nurse practitioners and pediatric office nurses, in particular, need to place importance on assessing and identifying behaviors that may indicate symptoms of one of the ASD diagnoses (Inglese, 2009). Attention to this issue in the primary care setting is especially important as symptoms of many of the ASD diagnoses appear in infancy and early childhood but many children are not diagnosed for months or years after the symptoms have been noted by parents (Dawson et al., 2002; Inglese, 2009; Filipek et al., 2000; Volkmar et al., 2005). Delays result in loss of opportunities for early developmental and parenting interventions that can maximize the well-being of the child. Assessing children for symptoms of ASD is complex as there are no definitive biologic tests (CDC, 2007). The CDC recommends developmental screening and surveillance of all children during well-child visits at 9 months, 18 months, and 24 or 30 months of age. Likewise, the AAP has a detailed algorithm regarding assessment and referral of children suspected of havingASD (2006). It is strongly recommended that every pediatric and public health practice have this algorithm posted in their practice. There are a growing number of tools targeted to assess and diagnose ASD more specifically. However, not all of them have sufficient psychometric testing to show evidence of accuracy and reliability in predicting or diagnosing ASD. The Modified Checklist for Autism in Toddlers (M-CHAT; Robins, Fein, Barton, & Green, 2001) is a 23-item parent-report checklist designed to screen children ages 16-30 months old and may be more appropriate for primary care screening. For a complete listing of tools, see the AAP article (2006) and the CDC Web site. At the present time, the "gold standard" for diagnosis of ASD is the Autism Diagnosis Interview-Revised (Lord, Rutter, & LeCouteur, 1994) and the Autism DiagnosticObservation Schedule-Generic (Lord et al., 2000). These tools are complex, time consuming to administer, and require extensive training. Nurses have an important role in helping parents of newly diagnosed children understand the particular disorder as well as the full spectrum of ASD. Confusing labels for the same disorder may upset parents who need help in clarifying the various terms used to discuss the same disorder. Parents also need help in understanding their children's atypical behavior and in finding appropriate resources and interventions that can maximize their children's potential (Inglese, 2009; Schuntermann, 2002; Tomanik, 2004). These children and their parents often need special interventions to help them cope with healthcare encounters, particularly hospitalizations. Parents of children with ASD experience many challenges and stress in parenting their children. They need interventions to reduce their stress and help them learn how to manage their children's behaviors and other problems (Diggie, McConachie, & Randle, 2003; Tomanik, 2004; Phetrasuwan & Miles, 2009). Two organizations of importance to parents are the Autism Society of America (www.autism-society.org) and Autism Speaks (www.autismspeaks.org). © (2009), Wiley Periodicals, Inc.