More so than many disorders that are first manifested in childhood, reliable and accurate identification of autism spectrum disorders in young children is complicated and requires a high level of clinical skill and knowledge of childhood development and developmental psychopathology. The 2013 DSM-5 altered the taxonomy of these conditions, gathering autistic disorder, Asperger’s disorder, and pervasive developmental disorders into one condition: autism spectrum disorder (ASD). 2014 data from the Centers for Disease Control and Prevention estimate that approximately 1 in 68 children have ASD. Boys are approximately 4 times as likely as girls to have this condition.
Like almost all mental health conditions, there is no sentinel characteristic that reliably distinguishes children with ASD from typically-developing peers. Although children with ASD exhibit behaviors that appear quite unusual (for example, prominent stereotypy, social interaction deficits), these behaviors also occur in typically-developing children and children with other conditions, to a lesser degree. For example, many three- and four-year-old children line up or stack objects, fail to respond to social overtures or look at others when involved in play or with unfamiliar people, flap their hands when excited or nervous, and show restricted food choices. Accurate assessment of ASD requires very careful attention to the frequency, severity, and duration of these behaviors, the settings in which they occur, antecedents and consequences, and the degree to which such behaviors impair a child’s social or educational development and skills. In addition, it is essential to be fully knowledgeable about typical child development and developmental psychopathology to determine how these behaviors compare to age-specific developmental expectations for typical children and children with different mental health conditions. As an example, children with anxiety disorders often demonstrate rigid adherence to nonfunctional routines or repetitive motor mannerisms, and those with social anxiety may show very little eye contact, ignore unfamiliar people, and be quite distressed when others try to initiate social interaction. To complicate matters, anxiety problems are frequently comorbid with ASD.
At this point, there is no single assessment procedure that accurately diagnoses children with ASD. The most accurate and useful evaluations of children consist of a multi-method, multi-informant methodology, which is the professional standard for all thorough psychological evaluations. Elements of these evaluations include:
- A careful developmental and health history usually obtained from parent report and, as appropriate, medical records.
- Depending on the age of the child, it is helpful to gather information about prior ASD screening, if available. For example, most pediatricians and Child Development Services case managers complete the Modified Checklist for Autism in Children – Revised (M-CHAT R) and the follow-up interview, which provides excellent information about ASD characteristics. Information about the M-CHAT-R is available at http://mchatscreen.com/wp-content/uploads/2015/09/M-CHAT-R_F.pdf and other internet sites.
- Structured behavior ratings scales completed by parents as well as a teacher or caregiver that provides information not only about ASD characteristics but of the child’s functioning in other areas as well, e.g., attention problems, anxiety, disruptive behavior. Examples: Achenbach System for Empirically-Based Assessment, Behavior Assessment Scale for Children. These can be supplemented with questionnaires specific to ASD (for example, the Pervasive Developmental Disorder Behavior Inventory, Autism Spectrum Rating Scale), although I encourage psychologists not to rely on these alone, and to collect information from multiple informants if these or similar scales are used.
- Direct observation of the child preferably in multiple settings. Care should be taken not to rely too heavily on child behavior manifest in the evaluator’s office at one visit in a novel environment with an unfamiliar adult – too many factors such as comfort in the setting, sleep, illness, etc. may affect the child’s behavior at one point in time. If possible, I recommend the child be observed in the school and/or at home, ideally by someone other than the psychologist (for example, a special educator or speech pathologist). We make use of a structured observation form that collects information about verbal and nonverbal communication, social interaction and social anomalies, stereotypic and repetitive behaviors, emotional functioning, and disruptive behavior. Many observations include interactive, semi-structured tasks to elicit information such as response to social overtures, representational play, and joint or shared attention. The Autism Diagnostic Observation Schedule conducted by a trained psychologist is an example.
- A structured parent diagnostic interview that collects detailed information about ASD behaviors (communication skills, verbal and nonverbal functional and pragmatic communication, stereotypy and restricted interests, sensory anomalies such as avoidance of or preoccupation with visual patterns, sounds, touch, insistence on sameness) as well as other review of systems such as health status, sleep and appetite, mood, anxiety, attention deployment, compliance with instructions, conduct problems. This can in part be guided by assessment procedures such as the Childhood Autism Rating Scale Second Edition.
- Assessment of developmental skills such as intellectual testing and evaluation of adaptive behavior. Approximately half of children with ASD have cognitive delays, which should be evaluated if possible. Intellectual testing also provides an excellent opportunity to observe a child’s joint attention to a task not of their choosing, and social responsiveness during structured and standardized tasks.
- Parent information on family and community functioning, stresses, adverse childhood experiences or trauma exposure, resources, and prior supports and interventions.
Carefully consider the purpose of the evaluation. Is your assessment being conducted to determine if a condition exists or to demonstrate eligibility for services? A thorough evaluation extends beyond this to elaborate on specific strengths and problems exhibited by the child with ASD, family and community resources, and recommendations for services and supports for the child.
Be aware that parents and caregivers may inadvertently or intentionally provide inaccurate information. For example, young parents who have no other children and who do not interact much with families having other children may not view ASD behaviors, speech or developmental delays as particularly unusual or problematic. Some parents have read a great deal about ASDs and may provide information that is slanted to fulfill their beliefs – parents may have a strong interest in either having their child diagnosed or not diagnosed with ASD.
There are many websites providing information about ASD. Some are excellent and accurate, others contain inaccurate information and unsupported claims. Psychologists can help parents negotiate the myriad messages that are available on line. Some reputable sites include the Association for Science in Autism Treatment at www.asatonline.org, Autism Speaks at www.autismspeaks.org, and the Maine Autism Society at www.asmonline.org .
If a child is diagnosed with ASD, they may be eligible for MaineCare insurance through the Katie Beckett option, even if parents would otherwise not meet income guidelines (http://www.maine.gov/dhhs/ocfs/cbhs/eligibility/katiebeckett.html). In addition, children with ASD may also be eligible for specialized case management and rehabilitative and support services. Information about this is available at http://www.maine.gov/dhhs/ocfs/cbhs/provider/forms/section-28.html