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Article Excerpt
Autism spectrum disorder (ASD), which includes classic autism, is a lifelong disorder that currently has an unclear etiology and no known cure (Autism Speaks, 2009; National Institute of Mental Health, 2007). While the recent surge of media attention has brought this once little known condition into the public forefront, families faced with having a newly diagnosed child are often overwhelmed and unable to discern legitimate interventions from faddish, unproven approaches. Pediatric nurses are generally among the first to interact with these families who are desperate for answers and direction. Thus, this article has two key purposes: to provide nurses with current information and an overview of autism spectrum disorder and to help nurses assist families with critical decisions related to current treatment and future planning. This article addresses the most common parental questions initially encountered when working with families of children with autism, including a summary of relevant literature pertaining to each question.
"How Can We Be Sure It's Autism and Not Something Else?"
With increasing prevalence and media attention comes general public awareness of ASD but also the potential for false positives. That is, parents may fear their children have autism when, instead, observed symptoms indicate other developmental problems (for example, delayed speech and language development) or disorders other than ASD (such as seizure disorder and hearing impairment). It is therefore important for nurses and other professionals who advise parents to understand the essential diagnostic features of ASD and to develop a clear plan for appropriate referral and follow up.
Unlike many other childhood disorders, ASD cannot be diagnosed with genetic testing or other laboratory or medical tests. However, there is strong evidence indicating a genetic predisposition, including twin data and the prevalence of autistic features in first-degree relatives (Freitag, 2008; Johnson, 2008; Muhle, Trentacoste, & Rapin, 2004). Nevertheless, to date, no gene or group of genes has been fully endorsed by the scientific community as causing ASD. Diagnosis is therefore based on behavioral features observed during evaluations and/or those reported by parents and caretakers.
"There Is So Much Information That It's Hard to Know When We Should Seek Evaluations and What Types Are Best."
Two decades ago, when autism first began to receive widespread public attention, well child visits rarely included developmental screening. Today, with this type of screening common practice, parents have an opportunity to voice initial concerns about their children. The first professional they see is often the pediatric nurse. At times, parents cannot clearly express their worries, noting only that "something just isn't quite right." This tends to occur earlier and with more frequency in families who already have typically developing children, and thus, have first-hand knowledge of typical child development with which to make comparisons.
Sometimes, children initially thought by their families to have autism are instead found to have severe hearing impairment. Because children experiencing significant hearing loss may be socially isolative, and may not seem to listen or communicate effectively, misdiagnosis is possible. Many children with hearing impairments and ASD also exhibit difficult behaviors, which may make obtaining a valid hearing evaluation very challenging. Nonetheless, a thorough hearing evaluation should be one of the first tests to follow a concern about autism because it is imperative to ensure proper diagnosis and subsequent treatment.
Another important step is a comprehensive diagnostic evaluation involving a multidisciplinary team. Ideally, this team should include a pediatric and/or child psychiatric nurse, psychiatrist, psychologist, neurologist, speech and language pathologist, and occupational therapist. Neurological tests, such as electroencephalograms (EEGs) and genetic testing, are often performed to rule out other diagnoses. Increasingly, experienced autism clinicians and researchers are using standardized measures that have undergone decades of development, testing, and validation, such as the Autism Diagnostic Observation Schedule (ADOS) (Lord, Rutter, DiLavore, & Risi, 2002) and the Autism Diagnostic Interview-Revised (ADI-R) (Lord, Rutter, & LeCouteur, 1994). Currently lacking are comparable instruments for children under 24 months. However, these are under development.
"What Are the Key Features and How Can I Recognize Them?"
The term autism spectrum disorder (ASD) includes several disorders that, as the name suggests, occur on a spectrum with varying severity. These include Rett's syndrome, Pervasive Developmental Delay, Asperger's Syndrome, and more classic autism (American Psychiatric Association, 2000). Children with classically described autism demonstrate symptoms that fall into three main categories: delays in speech and language development, impaired social relatedness,...
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