For parents who may be wondering about the process of obtaining an autism diagnosis for their child and what follows after a diagnosis, this article could help.
When parents first wonder if their child is on the autism spectrum, feelings of concern may arise along with questions as to what to do next. This review provides an overview of what criteria are examined by clinicians, as well as what the initial assessment process entails. If a diagnosis is made, guidance is also provided for parents to access services to help support their child’s continued success.
Diagnostic traits of autism
There are several areas to be evaluated by clinicians based on the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) criteria for autism spectrum disorder. The two main areas are deficits in social communication and restricted, repetitive patterns of behavior (American Psychiatric Association [APA], 2013).
First, deficits in social communication must be seen across multiple settings (e.g., at home and at school). This includes deficits in social-emotional reciprocity, such as limited sharing of emotions or interests or failure to engage in back-and-forth conversation (APA, 2013).
The child may also approach social situations in an unusual way or fail to initiate social interactions altogether. Additionally, deficits in nonverbal communication will be seen, such as poor integration of verbal and nonverbal communication (APA, 2013). This can look like poorly modulated eye contact, lack of facial expressions, or difficulty understanding and using communicative gestures.
Finally, the child may exhibit relationship deficits with difficulty developing, maintaining, and understanding relationships (APA, 2013). For example, the child may not be able to engage in imaginative play with peers or may have no interest in interacting with peers at all.
The second criterion is restricted, repetitive patterns of behavior. This can include stereotyped or repetitive movements (e.g., lining up toys, flipping or stacking objects) or speech (e.g., echolalia, idiosyncratic phrases) (APA, 2013). Additionally, the child may exhibit a strong, inflexible adherence to routine (APA, 2013). For example, the child may become distressed at minimal changes to his or her routine, have difficulty with transitions, and eat the same food each day. Highly restricted or fixated, abnormal interests may be observed, such as preoccupation with or excessive interest in unusual objects or topics (APA, 2013).
Finally, this can include hyper- or hypo-reactivity to sensory input from the environment (APA, 2013). For example, the child may have an adverse or excessive response to certain sounds, smells, or textures, or visual interest with lights and/or movement. The child may also experience an indifference to pain or changes in temperature (e.g., wearing shorts and sandals in the middle of winter).
The assessment process
The assessment process can consist of direct or indirect measures to evaluate the child’s abilities. The process can be finished in one day or broken up across multiple sessions. Depending on the child’s age, a parent may be able to sit in the room during this process. However, portions of the evaluation may be completed in the testing room with just the evaluator(s). Depending on the site, there may be one or more people conducting the evaluation, such as a psychologist, speech language pathologist, and/or occupational therapist.
The testing process allows clinicians to measure a child’s abilities and performance in comparison to other children their age based on standardized norms. The assessment process can consist of both direct and indirect tools.
Direct testing
Direct testing consists of tasks or activities that a clinician will ask children to complete and observe their performances. These measures can consist of specific autism measures, developmental/intelligence assessments, and measures of language and social/behavioral functioning. The autism-specific tools evaluate symptoms of autism such as social skills, communication, and restrictive and repetitive behaviors.
Depending on the age and functioning level of the child, some assessments can be a combination of play-based tasks with toys and/or structured questions. Examples of these tasks can include the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) and the Monteiro Interview Guidelines for Diagnosing the Autism Spectrum, Second Edition (MIGDAS-2). The assessment process can also include measures of overall intellectual or developmental abilities depending on their age.
The most common assessments used for direct testing can include, but are not limited to, the Bayley Scales of Infant and Toddler Development, Fourth Edition (Bayley-4), Mullen Scales of Early Learning (Mullen), Woodcock-Johnson Tests of Cognitive Abilities, Fourth Edition (WJ COG-IV), Wechsler Intelligence Scale for Children, Fifth Edition (WISC-V), and the Wechsler Preschool and Primary Scale of Intelligence, Fourth Edition (WPPSI-IV).
Regarding language measures, clinicians may examine pragmatic use of language, as well as receptive and expressive language functioning. Common language measures can include the Comprehensive Assessment of Spoken Language, Second Edition (CASL-2) and the Clinical Evaluation of Language Fundamentals, Fifth Edition (CELF-5).
Indirect testing
In addition to direct testing, an autism assessment may include indirect testing where people who know the child well can provide information from their perspectives, such as parents/caregivers and teachers. Examples of indirect measures may include rating scales (i.e., specific question probes with various answer options such as never, sometimes, often, or always) and an interview.
Many of these measures will ask for information about the child in a number of areas, such as when/if developmental milestones were met, current social interaction, sensory sensitivities, communication abilities, and restricted areas of interest. Some of the most common indirect measures used in autism evaluations include the Autism Spectrum Rating Scale (ASRS), the Autism Diagnostic Interview-Revised (ADI-R), and the Childhood Autism Rating Scale, Second Edition (CARS-2). However, each evaluation is individualized and may include different measures that address various concerns related to autism.
After the assessment is completed, the data are compiled into a report and the diagnostic criteria are reviewed to determine applicability to the child. Results are reviewed in a feedback session where the parents meet with the evaluator to discuss the results, observations made during the evaluation, and diagnostic conclusions. The evaluator will also discuss recommendations with the caregiver regarding concerns that were identified during the evaluation.
After obtaining an autism diagnosis
Should a diagnosis be obtained, the next step would be to consider the options for services and interventions. According to federal law, public school districts are required to provide services to children with disabilities that can impact their educational needs, including autism.
Children under the age of three years are provided services through state-run Early Childhood Intervention (ECI) programs, and children over the age of three years are served by the local public school districts. Children do not have to be a current student at the district to seek services, so children who are homeschooled may also be eligible for services.
Services through ECI are income-based and individualized based on the family’s resources; whereas there is no charge for school services. The school district may choose to conduct their own evaluation to determine the needs of the child, or they may choose to accept an evaluation from a private practice or clinic.
Schools can provide a variety of services through special education programs provided by the Individuals with Disabilities Education Improvement Act (IDEIA) or through the Section 504 program, and such services may include accommodations in the classroom (such as preferential seating or extended time), access to special education classrooms, social skills training, parent training, transportation, and speech, physical, and occupational therapy.
For more information about school-based services, parents can contact the local school district’s special education department. Intervention services may also be provided through home health (i.e., speech therapist coming into the home), walk-in clinics for Applied Behavior Analysis therapy, and/or occupational, physical, or speech/language therapy needs.
Private therapies are often covered by insurance. Parents can check with their provider to see how many sessions or what type of services would be covered.
If concerns arise related to a possible autism spectrum disorder, parents should obtain a comprehensive assessment to determine the need for intervention services. While the assessment and diagnostic process may seem daunting, parents are encouraged to advocate for their child and seek support through local providers. Early intervention to target social and communication needs is crucial to provide support for long-term success.
* This article was co-authored with Olivia King, Jasmine Hammer, & Briana Paulman.
References
American Psychiatric Association, (2013). Autism spectrum disorder. In Diagnostic and
Statistical Manual of Mental Disorders (5th ed.) https://doi.org/10.1176/appi.books.9780890425596.CautionaryStatement
This article was featured in Issue 126 – Romantic Relationships and Autism
