Impact Feature Issue on Supporting Success in School and Beyond for Students with Autism Spectrum Disorders
Identification and Assessment of Autism Spectrum Disorders
An increased awareness of Autism Spectrum Disorders (ASDs) leaves some educators and parents knowing enough to recognize extreme or classic indicators (e.g., no language at all, very aggressive behavior), but not familiar enough with the subtleties of this complicated condition to accurately rule in or out an Autism disorder. An appropriate, thorough evaluation is needed to be certain of a diagnosis at any age and doing an evaluation sooner rather than later is nearly always the best choice.
Why Identify Autism?
Identification gives families answers. Unfocused concerns can cause great anxiety, while determining that a child has an Autism disorder can lead families toward concrete information to better understand and interact with their child. Identification allows for selection of appropriate intervention. There is solid research about what kinds of programs are effective for children with ASD (e.g., National Research Council, 2001; Dawson & Osterling, 1997), and while there are philosophical and programmatic differences among them, there are important common features (e.g., high levels of structure, focus on direct instruction, substantial hours per week of intervention) that are different from more generic intervention programs. While ASDs are considered lifelong disorders and there is no known cure, the outcome for each individual is far from set in stone. There is plenty of room for improving the trajectory of each child’s development, especially when intervention starts early. Research on ASD interventions indicates that many children who start treatment earlier achieve significantly better outcomes (Mundy & Neal, 2001; Sigman & Ruskin, 1999).
What Are the Indicators of ASD?
Autism Spectrum Disorders impact three areas of development: (1) language and communication skills; (2) social skills; and (3) behavior, interests, and activities. Many children with ASDs are identified in the elementary school years. But children do not develop ASDs when they are four, six or eight years old; the indicators are likely present earlier.
Early identification of ASDs requires attention to behaviors the child is not exhibiting at all or is not doing as frequently as expected at that age. Indicators of possible ASDs in very young children include the following (Rogers, 2001; Travis & Sigman, 2000):
- No big smiles or other warm, joyful expressions by six months or thereafter.
- No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter.
- No babbling by 12 months.
- No back-and-forth gestures, such as pointing, showing, reaching, waving or three-pronged gaze (e.g., child looks at adult, looks at toy to indicate interest in it, looks back at adult to communicate something about the toy) by 12 months.
- No words by 16 months.
- No two-word meaningful phrases (without imitating or repeating) by 24 months.
- Anyloss of speech or babbling or social skills atanyage.
One of the most reliable characteristics that differentiate children with ASDs from their typically-developing and otherwise delayed peers, even at 12 months, is that the child does not respond consistently to his or her name (assuming that hearing is normal). Several indicators that are not reliable in differentiating ASDs in early childhood include weak attachment to caregivers, having routines, lack of eye contact, lack of functional play, and unusual sensory behaviors (e.g., sensitivity to touch). When considering any of the above, especially for a disorder as complicated as an ASD, it is important that one does not conclude that a child has an ASD until a full evaluation has been completed.
In older children, identification often results from the presence of excessive behaviors. That is, an older child is identified because he or she is doing something that is atypical in one or more of the three areas (e.g., repeating certain phrases over and over, acting aggressively, memorizing textbooks, having difficulty with transitions). Among the possible indicators in older children are:
- Failure to develop peer relationships appropriate to developmental level.
- Appropriate language skills, but not using language in a socially appropriate way (e.g., impairment in the ability to initiate or sustain a conversation).
- Stereotyped and repetitive use of language or idiosyncratic language.
- Preoccupation with an interest that is abnormal in its intensity or focus.
- Inflexibility, with a “need” for nonfunctional routines or rituals.
In summary, identification with older children often results from the presence of excessive behaviors, while in younger children it’s more often the absence of behaviors that differentiates children with ASDs from those who are typically-developing or generally delayed in development.
What Assessment Approaches Work?
If the above indicators are observed in a child, individualized assessment by an appropriately trained professional is warranted. By definition as a neurodevelop-mental disability, ASDs have indicators that change with development. It is important for the professionals involved in a child’s evaluation to be familiar with typical and atypical development, not just with ASDs as a disorder. While it is important to note that there is no single “test” for ASDs, good tools to guide professionals in evaluation efforts are useful, but until recently have been hard tocome by. Newer screening and assessment tools include theAutism Diagnostic Observation Schedule(Lord, Rutter, DiLavore & Risi, 2001);Systematic Observation for Red Flags for ASD in Young Children(Wetherby & Woods, 2004); and theChecklist for Autism in Toddlers(Baron-Cohen et al., 1996). Additional checklists that professionals use regularly include theGilliam Autism Rating Scale(Gilliam, 2006) and theChildhood Autism Rating Scale(Schopler, Reichler & Renner, 1988). The decision about what tools to use for an evaluation should be individualized based on the child’s skills and needs. The final assessment plan should always include observations in multiple settings as well as a thorough interview with caregivers, including developmental history.
Educational or Medical Identification
There are some important differences in what labels mean in the school system in contrast to the medical system. Identification through the schools (or other lead early childhood agencies) is free and its end goal is to provide appropriate educational services for the child and family. However, unless made by a licensed psychologist or medical doctor (which may or may not be covered by insurance), this identification is often considered an educational classification only and a separate medical diagnosis may be needed to access services outside of what the lead agency can offer (e.g., in-home support, medication). Medical diagnoses, on the other hand, do not always come with an intervention plan or individualized services. Some families choose to start with the medical diagnosis, others begin with the educational route, and still others pursue both at the same time. For a thorough and appropriate evaluation, it is desirable to look for a team of people from different specialties (e.g., speech clinician, psychologist) who specialize in ASDs, and a process that uses a variety of tools including observation in natural environments (e.g., home, school, childcare).
What are the Challenges of Early Identification?
Making an early judgment of “on or off the Autism spectrum” is certainly not without challenges. A main challenge of early identification is that less information is available. When children are very young there are simply fewer skills available for a clear developmental pattern to emerge. Having less information to go on does not mean early identification is impossible, but sorting through the nuances can be more complex compared to evaluating older children with clearer, more complete developmental patterns. Still, putting off a decision or attributing atypical behavior to “but he’s only two” is too common in both educational and medical arenas and may not be the most helpful response.
For additional resources about ASD assessment see the following Web sites:
The Parent Advocacy Coalition for Educational Rights (PACER) is also a good resource, especially for questions about parent rights during the assessment process. Educators and parents who want to know more about ASD assessment for a specific child should contact the special education director in their school district for appropriate local resources.
Baron-Cohen, S. (1996). Psychological markers in the detection of autism in infancy in a large population. British Journal of Psychiatry, 168, 158–163.
Dawson, G., & Osterling, J. (1997). Early intervention in autism: Effectiveness and common elements of current approaches. In M. J. Gurralnik (Ed.), The effectiveness of early intervention: Second generation research (pp. 307–326). Baltimore: Paul H. Brookes Publishing.
Gilliam, J. (2006). Gilliam autism rating scale, 2nd edition (GARS-2). Austin, TX: PRO-ED.
Lord, C., Rutter, M., DiLavore, P. C., & Risi, S. (2001). Autism diagnostic observation schedule. Los Angeles: Western Psychological Services.
Mundy, P., & Neal, A. R. (2001). Neural plasticity, joint attention and Autism. In L. M. Glidden (Ed.), International review of research in mental retardation (Vol. 23, pp. 138–168). San Diego: Academic Press.
National Research Council. (2001). Educating children with Autism. Retrieved from www.nap.edu/books/0309072697.html
Schopler, E., Reichler, R. J., & Renner, B. R. (1988). The childhood Autism rating scale (CARS). Los Angeles: Western Psychiatric Services.
Sigman, M., & Ruskin, E. (1999). Social competence in children with Autism, Down syndrome and other developmental delays: A longitudinal study. Monographs of the Society for Research in Child Development, Serial No. 256, 64(1).
Travis, L. L., & Sigman, M. D. (2000). A developmental approach to Autism (A. J. Sameroff, Ed.). New York: Kluwer Academic/Plenum.
Wetherby, A. M., & Woods, J. (2004). Systematic observation of red flags for Autism Spectrum Disorders in young children. Tallahassee, FL: Florida State University Press.