The occurrence of autism spectrum disorders (ASD) continues to rise. The Centers for Disease Control and Prevention (CDC) report the average prevalence rate for ASD to be 1 in 59 children for 8‐year‐olds from multiple communities in the United States. The data indicates that ASD is four times more common among boys than girls: 1 in 37 boys, compared to 1 in 151 girls (CDC, 2018). This is a 15% increase based on previous estimates reported in 2016 when 1 in 68 children were identified with ASD (CDC, 2016). Research has shown that early treatment leads to better outcomes (Bradshaw, Steiner, Gengoux, & Koegel, 2015). Therefore, early identification can make a critical difference in the lives of individuals with autism. Conversely, delay in identification and intervention is a matter of great concern (Siklos & Kerns, 2007).
Typically, parents are the first to suspect developmental differences in children with autism spectrum disorders. Parents’ first concern, usually when the child is 17 to 19 months old, is most often related to a delay in the development of language (De Giacomo & Fombonne, 1998). Research suggests that diagnosis can be reliably made by the second year of life (Rogers, 2009). However, the processes for early diagnosis are complex, and the observed behaviors for very young children may be qualitatively different from an older child with autism (Steiner, Goldsmith, Snow & Chawarska, 2012). Unfortunately, even though parental concerns may be reported to physicians the first two years of life, there is often a two-year delay between the first contact with professionals related to autism spectrum disorders and the official diagnosis (Filipek, et.al., 2000).
Learn the Signs. Act Early is a CDC website to help families identify early developmental problems (CDC, 2015). In spite of the agreement that early diagnosis and intervention is key, many children with autism are easily missed. Consequently, it is important for educational and medical professionals to listen when parents insist that something is wrong, and to provide early screening using validated screening tools to help identify problems early. Referring for a school assessment, medical assessment, and monitoring results will help the family get the support they need for their children.
Assessment in the public schools is conducted for the purposes of identification or establishing eligibility for special education services and to assist in planning an individualized education program (IEP). In Texas, assessment for identification requires that a licensed or certified specialist, such as a licensed specialist in school psychology or a speech/language pathologist, be involved in the assessment. Evaluation for programming, on the other hand, can be conducted by educational professionals. It is the responsibility of the public schools to provide an assessment when a student demonstrates characteristics consistent with an autism eligibility at no expense to the family.
The contrast between diagnosis and eligibility is subtle. The term “diagnosis” is used most often in assessments conducted in the private sector. In the United States, diagnosis is based on the current edition of the Diagnostic and Statistical Manual of Mental Disorders –Fifth Edition (DSM‐5), (American Psychiatric Association, 2013). In other countries, the International Classification of Diseases‐Tenth Revision (ICD‐10) (World Health Organization, 2014) serves as the diagnostic guide.
There are several specific differences between a medical diagnosis and an eligibility determination for receiving special education services. First, there is not a conclusive medical test for ASD. A diagnosis of autism is based on observing and interacting with the child. A medical diagnosis of autism is usually made by a physician, or medically-trained person, based on limited observations in the office setting (Finke, Drager & Ash, 2010). In contrast, an eligibility determination for autism in a school setting is completed by a trained team and they often have the opportunity to observe the child over a period of time, and in a variety of settings (Noland & Gabriels, 2004). A child may receive a diagnosis of autism from a physician or other professional in the public sector (i.e., psychologist), and this diagnosis may not be equivalent to eligibility for that child to receive special education services in the public school system. This situation can be particularly confusing for parents. In order for a child to be eligible for special education supports and services, his or her disability must have an adverse effect on the student’s education.
Unfortunately, school evaluation teams sometimes fail to consider educational factors beyond traditional academics. As a result, academically capable students with autism spectrum disorders who display deficits in socialization and communication that impact educational progress often are not served.
This practice conflicts with the very purpose of special education. According to federal law (IDEA), the purpose of special education is “to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living” (Individuals with Disabilities Education Act, 2004, §300.1; emphasis added). In light of this purpose, it is evident that the social and communication deficits displayed by students with autism must be included in the evaluation of educational need. In order to properly prepare students in these areas, the curriculum must include interventions beyond traditional academics.
Autism is defined by the Diagnostic and Statistical Manual – 5th Edition (DSM-5) (APA, 2013) using a two-domain model which includes social-communication deficits and repetitive interests/behaviors (RRB). With the updating of the DSM IV to DSM 5, a primary goal of refining the definition of autism was to increase specificity. Specifiers are important to assure validity across a variety of settings, so children with autism are correctly identified as having ASD, and other children who do not have autism do not incorrectly receive an ASD diagnosis. The DSM-5 exemplifies a dimensional approach to describing the variability of behaviors that are seen in individuals with autism. These complex behaviors are described based on the quality and quantity of the specific social-communication deficits and specific RRBs that are represented in the ASD diagnosis. It also allows for the fact that many features may be found in individuals with ASD, however, are not exclusively specific to individuals with ASD. (Grzadzinski, Huerta & Lord, 2013).
If a student who is eligible for special education under the category of Autism has an additional eligibility, the student should be served under both categories. One exception to this is if the child meets diagnostic criteria as a student with an emotional disorder. IDEA stipulates “Autism does not apply if a child’s educational performance is adversely affected primarily because the child has an emotional disturbance” (IDEA, 2004, §300.8, (c)(1)(ii)). In the vast majority of cases, Autism is appropriately considered the primary eligibility area. For example, when disorders such as depression or anxiety are observed, autism is most likely the underlying or “primary” disorder. Based on IDEA 2004, behaviors related to a diagnosis of autism may be manifested after three years old, however, these behaviors must adversely impact the child’s educational performance (IDEA, 2004). §300.8, (c)(1)(iii).
Since symptoms of autism are generally evident before the age of three, it is difficult to imagine a scenario where symptoms of anxiety or depression precede the autism. Applying the DSM-5 diagnostic criteria for autism, the behaviors may be manifested currently or the family may report that these behaviors occurred in the past.
In summary, an important message is that families and professionals in the private and public sector partner together to identify children with autism spectrum disorder as early as possible. If an autism diagnosis is confirmed and eligibility is established in the school setting, professionals and families should work together to implement the evidence-based interventions for addressing the child’s social, communication, and behavioral needs.