© Springer International Publishing Switzerland 2016
Johnny L. Matson (ed.)Handbook of Assessment and Diagnosis of Autism Spectrum DisorderAutism and Child Psychopathology Series10.1007/978-3-319-27171-2_44. Report Writing for Autism Spectrum Disorder Evaluations
Brian Belva1 , Aaron J. Fischer2, Amber M. Hasty Mills3, Ashley R. Dillon4, Amanda J. Beeman5 and Julie Cash1
(1)
Pediatric Psychological Associates, Louisville, Kentucky, USA
(2)
University of Utah, Salt Lake City, UT, USA
(3)
Shelby County Schools, Memphis, TN, USA
(4)
Fraser Child and Family Center, Minneapolis, MN, USA
(5)
Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Keywords
AutismReport writingEvaluationDiagnosisDiagnostic reportIntroduction
Autism spectrum disorders (ASD) are developmental disorders that include social and communication impairments as well as restricted and repetitive patterns of behavior (RRB; Chowdhury, Benson, & Hillier, 2010; Fodstad, Matson, Hess, & Neal, 2009). ASD affects approximately 1 % of children (Baird et al., 2006), with a more recent prevalence rate estimating that 1 in 68 children aged 8 years old is diagnosed with ASD (Centers for Disease Control and Prevention [CDC], 2014). Therefore, a comprehensive assessment and, in turn, a well-written report are needed to enhance treatment, guide and inform instruction specific to the individual’s needs, and provide information to the referral source and others involved in the individual’s treatment and/or care (Lichtenberger, Mather, Kaufman, & Kaufman, 2004). A psychological report should be integrative and includes results from all parties involved in the evaluation. Components that are commonly included in a comprehensive assessment report include background information, behavioral observations, psychometric testing results and interpretation, summary/diagnostic formulation, and recommended resources for parents and professionals (Lichtenberger et al., 2004; Saulnier & Ventola, 2012). Outlined below is further detail concerning these common components of an ASD-focused psychological evaluation.
Background History
When conducting a comprehensive neurodevelopmental evaluation for an individual suspected to have an ASD, it is important to conduct a thorough background history (Matson & Golden, 2014). Considering the limited amount of time most professionals have to gather information as well as the sheer breadth of relevant information that informs a diagnosis of ASD, practitioners must use their time efficiently by asking germane questions (Andersson, Miniscalco, & Gillberg, 2014). The following sections describe the critical areas of information that should be gathered and the rational for inquiring about each area. A caveat in writing the background history section is that the clinician should be diligent to include all relevant information while writing concisely and, clearly, keeping the audience of the report in mind.
Identifying Information
The identifying information section orients the audience of the report to the individual characteristics of the person being evaluated. In this section, the clinician should include the child’s first name and last name, age (reported in years and months [e.g., 4 years and 10 months old]), race and ethnicity, and gender. Also, information should be included about the individual’s parents or guardians and other individuals who live in the household. Finally, information should be included concerning the location where the individual resides (i.e., city and state). If the individual spends time at different residences (e.g., divorced parents with shared custody) or has visitation with parents, report the schedule when the individual lives with different caregivers (e.g., every other weekend with father).
Early Development
This section should present information on prenatal development , birth history, behavior as an infant, and developmental milestones (Easson & Woodbury-Smith, 2014). Regarding prenatal development, the clinician should include information concerning use of fertility drugs, complications during pregnancy to the individual or mother (e.g., gestational diabetes, hemorrhaging), exposure to teratogens (e.g., drugs, alcohol, and tobacco), and any prescription medications (Mamidala et al. 2013). When reporting birth history, include information about labor and delivery (e.g., Cesarean section, vaginal birth), use of epidural, gestational age, and birth weight. If the individual was born prematurely (i.e., the organs were not completely developed) or preterm (i.e., before 38 weeks), describe the type of neonatal care provided (e.g., neonatal intensive care unit), the amount of time spent in neonatal care, and any neonatal condition (e.g., jaundice). Also, describe the behavior of the infant and provide relevant information regarding any medical conditions.
After reporting on the birth history and behavior as an infant, the clinician should describe the individual’s achievement (or delay) of his/her developmental milestones (Kenworthy et al., 2012). These milestones include motor, toilet training, and language. Motor milestones that should be considered include the age at which the child first began sitting without support and walking without assistance. Fine and gross motor skills, which pertain to precise motor movement of the hands and fingers (e.g., holding a pencil, coloring, opening objects) and large movements and body control (e.g., sitting, crawling, walking), respectively, should also be reported. Regarding toilet training, the clinician should describe the age at which toilet training was mastered and any difficulty with toileting training such as incontinence (i.e., enuresis and encopresis) or constipation. If the individual was incontinent, the clinician should describe the time of day that the individual was incontinent (i.e., nocturnal or diurnal).
Language Development and Communication
Considering language and communication skills are core deficits in individuals with ASD (Kwok, Brown, Smyth, & Cardy, 2015), special attention should be paid to this section in the report. It is important to note that some caregivers might have difficulty remembering specific details about their child’s early language development; however, estimates of the following details are acceptable and because of their critical impact on the diagnostic formulation (Nordahl-Hansen, Kaale, & Ulvund, 2014). The communication section should include information concerning the age at which the individual began babbling, spoke his/her first words and phrases, and spoke in complete sentences. This section should also include information about receptive language skills, specifically the complexity of directions that the individual follows (i.e., single-step instructions, multistep instructions, etc.; Kjellmer et al., 2012). Next, information about the individual’s use of nonverbal communication, such as gestures, should be reported. Regarding gestures, the clinician should distinguish which type(s) of gestures the individual uses (Lambrechts, Yarrow, Maras, & Gaigg, 2014), including descriptive (e.g., holding one’s hands apart to show how big something was), conventional (e.g., shaking one’s head to indicate no), and instrumental (e.g., holding one’s hand out, like begging, to obtain something) gestures. Moreover, the clinician should report if the individual currently or previously used other people as a tool to communicate their needs or convey information (e.g., grapping the hand of a parent and using it to point to a picture in a book or taking them to the refrigerator to access juice).
Beyond gestures, clinicians should gather information about potential unusual communication problems that are part of the diagnostic criteria for ASD (Hattier & Matson, 2012). This includes echolalia, undirected repetitive vocalizations, difficulty understanding metaphorical language and/or jokes, and idiosyncratic speech. When gathering information related to idiosyncratic speech , the examiner should consider quality, rate, rhythm, tone, volume, and any pronoun reversals or atypical language use. Finally, in this section, a clinician should include information about alternative modes of communication (e.g., American Sign Language, picture exchange communication system, augmentative communication devices). Language regression is also an important consideration, and the clinician should include the age of regression in the report (van der Meer, Sutherland, O’Reilly, Lancioni, & Sigafoos, 2012). Other information about social communication should be reported in the following section, social skills.
Social Skills
Similar to communication skills, social skills are a core deficit of individuals with ASD and a critical component of the background information section (Cervantes & Matson, 2015; Hanley et al., 2014). As such, this section should clearly articulate the specific social strengths and weaknesses of the individual. The clinician should begin by reporting early social skills including eye contact, social smiling, responding to name, and joint attention. Eye contact should be discussed in terms of the individual’s ability to use eye contact to facilitate nonverbal social communication (Louwerse et al., 2013), as well as in response to stimuli in the environment (e.g., looking at a parent/caregiver after hearing a loud noise). Social smiling should be noted as it relates to the individual’s directed response (i.e., smiling toward a parent/caregiver) to smiles emitted by a parent/caregiver. In addition, responding to an individual’s name should be reported in terms of the frequency of responding and the quality of the response.
Joint attention , which is defined as sharing experiences between two individuals, is a pivotal social skill in young children (Jones & Carr, 2004). Joint attention includes a variety of gestures (e.g., giving, showing, and pointing) and integrated eye contact. In the report, a clinician should report if the individual previously or currently engages in joint attention, the types of behaviors they emit as part of their joint attention repertoire, and if they initiate and/or respond to joint attention (Krstovska-Guerreo & Jones, 2013).
After reporting information about early social skills, the clinician should describe the individual’s social interactions with peers (Deckers, Roelofs, Muris, & Rinck, 2014). This information is dependent on the individual’s age and social functioning. Important aspects of social interactions with peers include how the child engages in group settings, whether he/she has preferred friends, whether the child engages in collaborative/interactive play with peers, and whether the individual is responsive when peers approach him/her to engage in play. In addition, how peers respond to the child is an important consideration. For older children, details about any romantic relationships may be appropriate to include.
Additional information about social communication skills is important to include in this section (Radley et al., 2014). Specific social communication skills include initiating/responding in conversations, reciprocal communication skills (e.g., back-and-forth comments), understanding social relationships, and social pragmatics.
Play Skills
During early childhood, play skills are particularly important because they allow children to access and learn from their environment; moreover, they facilitate social interactions and communication with others (Morrison, Sainato, Benchaabane, & Endo, 2002). Gathering information related to the child’s play yields important diagnostic information. More specifically, it is in play that delays in social communication and RRB are often observed. It is important to report whether the child engages in any atypical play behaviors (i.e., playing with parts of objects or playing with toys in a nonfunctional manner), exhibits intense/restricted interests in certain play materials, and displays imaginative/pretend play and the extent to which the child includes others in his/her play. Examples of functional and pretend play include rolling a car on a table and brushing a doll’s hair with a spoon, respectively. Finally, the clinician should report if the individual currently or previously engaged in imitation of others’ play.
Emotional Skills
Broadly, individuals with ASD have difficulty interpreting and expressing emotions (Dapretto et al., 2006). Clinicians should report on the individual’s emotional understanding, emotional expression, and emotional regulation. Additionally, the clinician should describe the individual’s ability to identify emotions in others and empathize with them. The clinician should also describe the individual’s proclivity to be affectionate toward others (e.g., initiates giving hugs to others) and their desire to receive affection (e.g., asks others for a hug or kiss). It is in this section that the examiner should comment on the child’s typical mood. The child’s mood is particularly relevant to any differential diagnoses that might be present, such as anxiety.
Sensory Issues
Individuals with ASD often exhibit hyperreactivity to sensory stimuli and/or have idiosyncratic sensory interests (Tomchek, Huebner, & Dunn, 2014). As sensory seeking behavior or sensory sensitivities are part of the diagnostic criteria for ASD, it is important to gather this information across all senses. The clinician should differentiate whether sensory sensitivities are hyperreactive (e.g., adverse reaction to noises) or hyporeactive (e.g., seemingly under reactive response to painful stimuli).
Behavioral Concerns
Individuals with ASD evince behavioral concerns that vary in their topography and encompass different functions (Lane, Paynter, & Sharman, 2013). In regard to behavioral concerns, a clinician should report information across each of the following areas: RRB, disruptive behavior (e.g., aggression, tantrums, noncompliance, and self-injury), substance use or abuse, sexual behavior, and adaptive behavior skills. The clinician should report on each area that the individual or their parent endorsed. Specifically related to RRB, whether behaviors (e.g., body rocking, hand flapping, toe walking, pattern running, tics), interests (e.g., frequently and acutely discussing Pokémon, entomology, or “Dr. Who”), or activities (e.g., navigating the grocery story in the same way) are endorsed, the clinician should clearly describe RRB, providing examples and discussing how the behaviors cause dysfunction for the individual. Additionally, the clinician should report what happens when others attempt to disrupt or interrupt the individual while he/she is engaged in RRB.
Next, the clinician should report any concerns related to disruptive behavior (Kaat & Lecavalier, 2013). Within this area, specific information should be discussed regarding aggression, noncompliance, tantrums, and self-injury. The clinician should clearly convey the type of behavior (e.g., hitting, hand banging, eloping, dropping to floor), antecedents of the behavior, and how others respond to those behaviors. Should this yield any clinician or parent safety concerns for the child, the report should include relevant portions of the safety assessment that the clinician conducts with the family. If the individual being evaluated has a history of or currently uses drugs or alcohol, the clinician should include that information in this section as well. Substances of the individual used/uses and the frequency and duration of the substance use would be important to outline. Prescription medication that has been prescribed by a physician should be reported later in the report; however, if the individual being evaluated reports abuse of prescribed medications, the clinician should include that information in this section. Likewise, in this section, the clinician should discuss if the individual engages in sexual behavior, if developmental appropriate. If so, the clinician should inquire if the individual is engaging responsible sexual activity (e.g., uses protection and understands the potential contraction of a sexually transmitted disease).
Finally, the clinician should discuss the individual’s adaptive behavior. Adaptive behaviors (i.e., skills of daily living) are useful for people to conduct themselves safely and responsibly (MacDonald, Lord, & Ulrich, 2013). They encompass a broad domain of skills (e.g., toileting, cleaning, dressing, navigating in the community, etc.). Particular attention should be placed on toileting skills, especially for young children. If issues with toileting exist, the clinician should describe the frequency of enuresis/encopresis, the time of day that they typically occur, and any consequences for incontinence. Within the report, the clinician should describe the individual’s ability to perform these skills; however, as part of a comprehensive ASD evaluation, more information about adaptive skills is reported through standardized measures of adaptive functioning.
Eating
Individuals with ASD commonly have feeding problems (Luiselli, 2006). Feeding difficulty includes food selectivity, food refusal and avoidance, and specific problem behaviors associated with instructions to eat certain foods. In this section, the clinician should report the individual’s eating habits . Additionally, the clinician should describe if the individual is able to self-feed or needs assistance or if the individual requires any artificial feeding (e.g., tube feeding). Finally, the clinician should report if the individual has any motor difficulties with feeding (e.g., oral-motor skills, chewing, swallowing) and if the individual engages in any incompatible feeding behaviors such as chocking, gaging, or vomiting.
Sleeping
Research indicates that children with ASD have sleep difficulties , with prevalence rates ranging from 44 to 83 % (Richdale, 1999). Considering these data, particular attention should be placed on gathering and reporting information about the individual’s sleep. Specifically, the clinician should include information about any difficulties with falling and remaining asleep, night terrors/nightmares, early waking, naps, and sleep hygiene. If any problems exist within the previously mentioned areas, the clinician should discuss the dysfunction and how the family responds to those sleep issues.
Educational and Employment History
The Individuals with Disabilities Education Act (IDEA, 2004) ensures that all children with qualifying disabilities, including children with ASD, receive a free and appropriate education in a setting as similar to their typically developing peers as possible. The clinician should begin this section by reporting the names of the school and current grade. Also, a list of the previous schools, grades attended at those schools, and grade retentions or promotions should be provided. Next, the clinician should discuss the type of setting in which the individual receives his/her education. This setting should be discussed in terms of the level of inclusion (e.g., substantially separate classroom, self-contained classroom, inclusion classroom). The clinician should also discuss if the individual has an Individualized Education Program (IEP ) and report the individual’s educational classification. The clinician should report specific services that the individual receives under the IEP (e.g., speech and language service, occupational therapy, Applied Behavioral Analysis Therapy, adapted physical education, etc.).
If applicable, the clinician should report the individual’s current job status and/or job history. In this section of the report, the clinician should discuss the types of jobs the individual currently or previously held, his/her responsibilities at that job, and any information about difficulties performing his/her job or terminations (Gal, Landes, & Katz, 2015). For individuals with ASD who are able to attend college, this section of the report should also reflect information about current or previous postsecondary education and any difficulties the individual had in those settings or while obtaining entrance into those settings.
Intervention History
There are a variety of interventions that an individual with ASD may have received. These interventions range from behavioral treatments for skill acquisition to special diets. Considering the variety of interventions and their empirical support, it is important to report the types of interventions the individual being evaluated currently or previously received and their effectiveness. First, the clinician should use this section to discuss enrollment in early intervention (EI) services before age three (MacDonald, Parry-Cruwys, Dupere, & Ahearn, 2014). Specifically, the clinician should report which type of services the individual received (e.g., speech and language therapy [SLT], occupational therapy [OT], physical therapy [PT], applied behavioral analysis [ABA] therapy, etc.), the frequency and duration of each service, and each therapy’s effectiveness. Next, information concerning interventions the individual received after age three should be noted. These could be services received in school (e.g., SLT, OT, PT, ABA therapy, social skills groups) as well as services outside of school. Other interventions could include job coaching, community vocational training, or alternative interventions (e.g., special diets).
Medical History
Individuals with ASD, like those who are typically developing, experience a variety of comorbid medical conditions (e.g., sleep problems, hormone dysfunction, metabolic disorder, gastrointestinal disorders, and seizure disorders). Considering the potential for comorbid medical conditions, clinicians should obtain thorough information from the individual’s family (or the individual, if appropriate). Relevant medical information includes chronic concerns, allergies, medications, surgeries, or hospitalizations. Of particular relevance are seizure disorders, gastrointestinal problems, traumatic brain injury, and exposure to lead. Finally, the clinician should report if the individual received genetics testing, electroencephalography (EEG), or magnetic resonance imaging (MRI) as well as the results of those procedures.
Psychiatric and Trauma History
Although not unique to an evaluation for an individual with ASD, psychiatric and trauma history are essential elements of the report (Mehtar & Mukaddes, 2011). Trauma could include abuse, neglect, witnessing or experiencing violence in the community or home setting, or traumatic loss of a loved one. If trauma is endorsed, the clinician should include any agency involvement including the Department of Social Services, Department of Children and Families, or Department of Protection for Persons with Disabilities. Each state has their own agency for the previously described departments and clinicians should be familiar with their respective state agencies. If the individual being evaluated was followed by any agency, a description of the services they received should be included.
The clinician should also report any psychiatric history for the individual being evaluated. The psychiatric history should include psychiatric hospitalizations, the date and length of hospitalization, and the reason for the hospitalization. Besides hospitalization, the clinician should report if the individual being evaluated receives services from a psychiatrist. If so, the clinician should report the psychiatrist name, duration and frequency of visits, and name of prescribed medications (including frequency and dosage). This section should also include the individual’s risk for suicide.
Family History
In this section of the background history, the clinician should discuss the family history of psychopathology for the individual being evaluated. It is considered proper etiquette to report this information in a somewhat vague manner (i.e., there is a history of bipolar disorder in the immediate family). In this way, the report maintains its focus on the child, and the inclusion of family history does not present a barrier to families who might not wish to share this information with outside sources, such as the school.
In addition to the family history of psychopathology, the clinician should also discuss the relationship of the individual’s parents, the family support system (e.g., help from extended family or neighbors), community/religious involvement, and any recent family or socioeconomic stressors.
Previous Psychological Testing
The review of written records is often an important component of collecting adequate background information. These sources likely contain information (e.g., test results, diagnoses, etc.) pertinent to the new report, as they provide details that may inform the interpretation of current test results and document previous levels of functioning that affect diagnostic conclusions. However, it can be difficult to decide what information from these reports to include and how to incorporate it into the background information section in a clear and concise manner.
As with all sections of the diagnostic report, the writer should always keep the referral question at the forefront of his/her mind when deciding what information to omit or include (Lichtenberger et al., 2004). Asking oneself “how does this detail help me answer the referral question?” can aid in the decision of whether to include specific information from previous evaluations. Necessary information will likely provide some context for the previous evaluation, provide support for differential/comorbid diagnoses, inform the reader’s understanding of the client’s course of development, and highlight progress that has been made over time (Saulnier & Ventola, 2012).
As a general guideline, when summarizing the results of previous evaluations, it is important to include the month/year of testing, referral question at the time of testing, an overview of test results, diagnoses given, and the family’s follow-up with recommendations (Lichtenberger et al., 2004). It is also important to note the previous examiner’s conclusions concerning the validity of the results. If the assessment was thought to be invalid, it may be misleading to include the test results (i.e., a Full Scale IQ, etc.) and is more appropriate to emphasize the evaluator’s conclusions. This general guideline can also be applied to the review of other records, such as medical records or Individualized Education Programs (IEPs).
The information should be summarized briefly and may be sufficiently captured in a few sentences. It is not necessary to include the level of detail that the writer will use in his/her own interpretation of test results (e.g., presenting test results in charts, full analysis of a profile, etc.). However, there may be unique circumstances in which it is appropriate to go into further detail. For example, if the writer finds that previous test results conflict with the results of the current evaluation, there may be cause for a more thorough summary of the previous testing in order to highlight these differences. In this situation, a higher level of detail in the background information section will enable the writer to interpret and/or create hypotheses about these discrepancies later in the report.
Behavior Observations
Behavior observations are essential to any ASD evaluation. The reader may notice that the format of the behavioral observation section reflects the background history section. However, in this section, the focus shifts from reported diagnostically relevant information to observed diagnostically relevant information. This section, in particular, allows the clinician to provide readers with a picture of the client’s presentation and ultimately provides an initial illustration of the diagnostic conclusion. As with other sections, the key to writing the behavior observation section is to determine which information is most relevant to the referral question (i.e., “Does this child have ASD?”) and if the information adds anything to the overall evaluation of the individual. Saulnier and Ventola (2012) note that any observations should have a clear purpose for inclusion. It is wise to avoid rehashing every detail that occurred during the observation.
This section includes observations from the totality of the evaluation, beginning in the waiting room through saying goodbye. For some clinicians, such as school providers or those who provide in-home services, observations in other settings, such as the classroom, may be beneficial. In order to accurately and concisely present behavioral observations to the reader, one must develop a strong foundation in basic behavioral observations, as well as be familiar with ASD diagnostic criteria, common features of the disorder, and differential diagnoses.
General Considerations
According to Morrison (2008), a mental status exam is the clinician’s appraisal of an individual’s current level of functioning. This is predominately comprised of behavioral observations, as well as assessment of cognitive aspects (i.e., delusions, hallucinations, insight; Morrison, 2008). It should be noted that these cognitive aspects may be difficult to assess in young children, nonverbal, or lower functioning individuals who may not be able to answer questions about the content of their thoughts or indicate they are oriented to person, place, time, and situation. However, behavioral observations about the individual’s mood, affect, and speech provide a glimpse into other aspects of the individual’s internal world. For the purposes of this text, formal mental status tasks will not be described, rather, behavioral observations that are particularly relevant to an assessment of ASD will be provided. Three areas of general behavioral observations include the individual’s appearance and physical behaviors, mood and affect, and the presentation of speech, or lack thereof (Morrison, 2008). These three areas require simple observation during interview, testing, or other planned observations.
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