For parents wondering about the process of getting an autism diagnosis for their child and what happens after a diagnosis, this article might be helpful.
When parents first wonder if their child is on the autism spectrum, feelings of worry can arise along with questions about what to do next. This review provides an overview of the criteria that clinicians consider, as well as what the initial assessment process involves. If diagnosed, guidance is also provided for parents to access services to help support their child’s continued success.
Autism Diagnostic Traits
Several domains should be assessed by clinicians based on the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) criteria for autism spectrum disorders. The two main domains are social communication deficits and restricted and repetitive behaviors (American Psychiatric Association [APA]2013).
First, social communication deficits need to be observed in multiple settings (eg, at home and at school). This includes deficits in socio-emotional reciprocity, such as limited sharing of emotions or interests or the inability 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 non-verbal communication will be observed, such as poor integration of verbal and non-verbal communication (APA, 2013). It may look like poorly modulated eye contact, a lack of facial expressions, or difficulty understanding and using communication gestures.
Finally, the child may present relational deficits with difficulties in developing, maintaining and understanding relationships (APA, 2013). For example, the child may not be able to engage in imaginative play with peers or may not feel like interacting with peers at all.
The second criterion is restricted and repetitive patterns of behavior. This can include stereotyped or repetitive movements (eg, lining up toys, turning or stacking objects) or speech (eg, echolalia, idiosyncratic phrases) (APA, 2013). In addition, the child may show a strong and inflexible adherence to routine (APA, 2013). For example, the child may become distressed by small changes in routine, have difficulty with transitions, and eat the same food every day. Very restricted or fixed abnormal interests can be observed, such as an excessive preoccupation with or interest in unusual objects or subjects (APA, 2013).
Finally, it can include hyper- or hypo-reactivity to sensory inputs from the environment (APA, 2013). For example, the child may have a negative or overreaction to certain sounds, smells, or textures, or a visual interest in lights and/or movement. The child may also experience indifference to pain or temperature changes (eg, wearing shorts and sandals in the dead of winter).
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The evaluation process
The assessment process can consist of direct or indirect measures to assess the child’s abilities. The process can be completed in one day or spread over multiple sessions. Depending on the age of the child, a parent may be able to sit in the room during this process. However, some parts of the assessment can be done in the exam room with only the assessor(s). Depending on the site, one or more people may perform the assessment, such as a psychologist, speech therapist and/or occupational therapist.
The testing process allows clinicians to measure a child’s abilities and performance against other children their age based on standardized standards. The evaluation process can consist of direct and indirect tools.
Direct tests consist of tasks or activities that a clinician will ask children to perform and observe their performance. These measures may consist of autism-specific measures, developmental/intelligence assessments, and measures of language and social/behavioral functioning. Autism-specific tools assess autism symptoms such as social skills, communication, and restrictive and repetitive behaviors.
Depending on the child’s age and level of functioning, some assessments may be a combination of play-based tasks with toys and/or structured questions. Examples of these tasks may 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 may also include measures of overall intellectual or developmental abilities based on their age.
The most commonly used assessments for direct testing may include, but are not limited to, the Bayley Scales for Infant and Toddler Development, Fourth Edition (Bayley-4), the Mullen Scales for Early Learning (Mullen), the Woodcock-Johnson Tests of Cognitive Ability, Fourth Edition (WJ COG-IV), the Wechsler Intelligence Scale for Children, Fifth Edition (WISC-V), and the Wechsler’s Preschool and Elementary Intelligence, Fourth Edition (WPPSI-IV).
With respect to language measures, clinicians can examine pragmatic language use, as well as receptive and expressive language functioning. Common language measures may include the Comprehensive Assessment of Spoken Language, Second Edition (CASL-2) and the Clinical Assessment of Fundamentals of Language, Fifth Edition (CELF-5).
In addition to direct testing, an autism assessment can include indirect testing where people who know the child well can provide information from their perspective, such as parents/guardians and teachers. Examples of indirect measures may include rating scales (i.e. specific questions with various response 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 have been reached, current social interaction, sensory sensitivities, communication skills, and developmental domains. limited interest. Some of the more commonly used proxy measures in autism assessments include the Autism Spectrum Rating Scale (ASRS), the Autism Diagnostic Interview Revised (ADI-R), and the Autism Scale. Childhood Autism Assessment, Second Edition (CARS-2). However, each assessment is individualized and may include different measures that address various autism concerns.
Once the assessment is complete, the data is compiled into a report and the diagnostic criteria are reviewed to determine their applicability to the child. The results are reviewed in a feedback session where parents meet with the assessor to discuss the results, observations made during the assessment, and diagnostic conclusions. The assessor will also discuss recommendations with the caregiver regarding concerns that were identified during the assessment.
After being diagnosed with autism
If a diagnosis were obtained, the next step would be to examine options for services and interventions. Under federal law, public school districts are required to provide services to children with disabilities that may impact their educational needs, including autism.
Children under the age of three receive services through state-run Early Childhood Intervention (ECI) programs, and children over the age of three are served by local public school districts. Children do not need to be a current student in the district to apply for services, so children who are homeschooled may also be eligible for services.
Services through the ECI are income-based and individualized according to family resources; while there are no fees for school services. The school district may choose to conduct its own assessment to determine the child’s needs, or it may choose to accept an assessment from a private office or clinic.
Schools may provide a variety of services through special education programs provided by the Individuals with Disabilities Education Improvement Act (IDEIA) or Section 504 program, and these services may include classroom accommodations (such as preferential seating or extended time), access to special education classes, social skills training, parent training, transportation and speech therapy, physiotherapy 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 pathologist coming to the home), walk-in clinics for applied behavior analysis therapy and/or occupational, physical or speech 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 about possible autism spectrum disorder, parents should obtain a full assessment to determine the need for intervention services. Although the assessment and diagnosis process can seem daunting, parents are encouraged to advocate for their child and seek help from local providers. Early intervention to target social and communication needs is crucial to providing support for long-term success.
* This article was co-authored with Olivia King, Jasmine Hammer, and Briana Paulman.
American Psychiatric Association, (2013). Autism Spectrum Disorders. In Diagnosis and
Statistical Manual of Mental Disorders (5th ed.) https://doi.org/10.1176/appi.books.9780890425596.CautionaryStatement
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