WHAT TO EXPECT DURING THE DIAGNOSING PROCESS
The word ‘spectrum’ in the diagnosis of autism spectrum disorder (ASD) means just that: this diagnosis encompasses a spectrum or range of children with vastly different skills, temperamental styles, and personalities. Dr. Scott Allen, Psy.D., our InBloom Autism Services Diagnostic Director, noted recently in his post titled Five Signs That Can Potentially Point to ASD, certain behaviors or signs are strongly associated with a diagnosis of autism spectrum disorder. However, how these characteristics are expressed differs from child to child. And as we value each child’s unique nature, this diversity makes for a multifaceted and complex assessment process.
The first step in the process is the decision to seek an evaluation; there is no one reason for initiating an autism evaluation for your child. Perhaps you have shared concerns about your child’s speech development (e.g., atypical language patterns) with your pediatrician and he or she has suggested an evaluation. Perhaps your child’s preschool teacher has noted that your child struggles with social communication or lacks interest in classmates. Perhaps you have noticed that your child shows an intense focus on certain activities or interests to the exclusion of more age expected interests.
This diagnosis encompasses a spectrum or range of children with vastly different skills, temperamental styles, and personalities.
Once you have decided to seek an evaluation, the next step is to decide how the information will be used or what you hope to accomplish with an evaluation. Common goals for an evaluation include:
Determining the best therapy approach(es) for your child
Assisting in determining school placement or
Developing appropriate expectations for your child
The third step in the process is choosing the right diagnostician for the evaluation. A psychologist is a doctorate level practitioner who is licensed by their state to assess, diagnosis, and treat children with special developmental needs. At InBloom Autism Services, our assessments are performed by psychologists who have broad training and experience in child development and psychological assessment. They also possess specialized expertise in diagnosing children on the autism spectrum. As with any professional, a good psychologist will take your concerns seriously and encourage you to share information about your child. If you have a few basic questions about the process and the psychologist’s credentials, they can answer these questions over the phone prior to the appointment. Do not hesitate to ask:
What is your professional training and experience, and does it include autism assessment? What is involved in the diagnostic assessment? When will I get the results?
Will it be helpful to review records from prior evaluations/therapists/school/ medical professionals? What records should I bring to the evaluation?
How should I prepare my child the day of the evaluation?
What is the process of obtaining an accurate diagnosis and treatment plan?
Feel free to ask how your records are kept private. Confidentiality refers to an ethical principle associated with medical and mental health professionals (as well as other professions) that mandates keeping information gathered during the assessment private. Although all states have statutes that specify exceptions to confidentiality (e.g., in the case of suspected elder or child abuse), communication between a family and their psychologist is “privileged” by law and may not be shared with 3rd parties without written, informed consent. In other words, InBloom psychologists keep the clinical data (history, test results, etc.) they gather private unless you give them informed, signed consent to share specific information with your child’s school, pediatrician, or other therapists.
It is also important for the psychologist to distinguish between behaviors that tend to occur in just one setting, say home, and behaviors that occur across settings and caretakers.
That brings us to step five: becoming informed about what to expect when you arrive at the office with your child for the evaluation: What kinds of information should a clinician who is evaluating your child take into account and how is the information obtained? Distinguished researchers in the field of autism spectrum disorder, such as neurodevelopmental specialists Drs. Sam Goldstein and Sally Ozonoff (2018), agree that a meaningful diagnosis requires a multidimensional assessment to gain the best possible understanding of your child’s overall functioning (p. 9). A full assessment, according to experts, will include the following components:
You can expect that the psychologist will have a lengthy talk or “Interview” with you and other family members present. This family interview may be quite detailed and cover the child’s early development, relevant family history, other therapies, prior assessment results, school progress, sibling relationships, interpersonal relationships, social interaction, play patterns…it’s a long list and can take over an hour to gather all of this important information. Often, you may be asked to complete parent questionnaires and history forms intended to assist the psychologist in collecting information about your child. An InBloom psychologist will want to talk to you about a whole lot more than the symptoms or current concerns, although this is typically the initial focus of the interview.
Expect the psychologist to ask you about situational factors, key life events, and, importantly, your view of the problem. It is also important for the psychologist to distinguish between behaviors that tend to occur in just one setting, say home, and behaviors that occur across settings and caretakers. Early developmental information is especially important in reaching the correct diagnosis because some children mature or “grow out of” early signs of ASD, while other signs of ASD become more evident as a child grows older and faces increased expectations for socialization outside of their immediate family.
Another component of the evaluation is observation of the child outside of the structured testing situation. Not only will the psychologist attend to how your child interacts with the people and objects present, they will observe the child’s social skills, language, and behaviors in a naturalistic setting where demands are limited. Because of the diversity of ASD across children, the observation component is an important part of understanding your child’s unique way of playing, relating, and communicating. Depending on the child’s age and language levels, the psychologist may ask the child about their interests, preferred activities, and friendship patterns.
The psychologist may ask to review your child’s records from prior therapy or psychological evaluations, and, if your child is in school, school records and school evaluations. Your psychologist may ask to speak to your child’s teacher or request that your child’s teacher complete a behavior checklist or questionnaire similar to those filled out by you. It may be informative to find out how a teacher sees your child, and whether the behaviors teachers notice in the classroom differ from the behaviors parents observe within the home. Remember, psychological tests are not interpreted in isolation; the child’s behavior in familiar settings also provides a meaningful context to assist with diagnosis and determination of recommendations.
ADMINISTER STANDARDIZED TESTS
Psychological tests, often called standardized tests, are not scored based on a pass-or-fail scale. Often there are no right or wrong answers to these tests. Standardized is a fancy word that means these tests have been taken by many, many different children, and that “base” enables the psychologist to compare your child’s scores with the typical performance of same-age peers (called a norm group or standardization sample). At InBloom, the evaluation often starts with a specialized autism diagnostic instrument, such as the Autism Diagnostic Observation Scale (ADOS-2), that provides a structured way to organize and understand your child’s behavior.
The ADOS-2, considered the Gold Standard in diagnostic assessment, includes age appropriate versions or modules for a wide range of ages. Some of the modules center around toys and play activities and are quite game-like. However, these “games” allow the evaluator to observe important skills, such as whether your child responds to social routines, initiates communication with the people present, and participates in give-and-take interaction.
The psychologist team of InBloom Autism Services prides themselves on providing parents with detailed, parent-friendly reports that clearly describe the findings, a diagnostic explanation and extensive recommendations aimed at helping your child progress.
A FEEDBACK OR INTERPRETATIVE SESSION
The follow-up or interpretative session is basically a conversation between you and the psychologist about the assessment findings and the diagnostic implications of the findings. This is the opportunity to talk about the assessment results, the child’s diagnosis, if any, and clinical/school recommendations:
Feedback may be given at the time of the assessment or at a later date.
Feedback is generally geared toward the parents, and the child does not always have to be present.
Feedback can be given in person, through telehealth communication, and in certain cases, by phone.
The psychologist team of InBloom Autism Services prides themselves on providing parents with detailed, parent-friendly reports that clearly describe the findings, a diagnostic explanation and extensive recommendations aimed at helping your child progress. You can expect the psychologist to cover several general areas in explaining the test results, including your child’s language patterns, social interaction, and anything important about their play and behavior patterns. Whether or not the assessment culminates in a diagnosis, the psychologist will fully explain how they reached their impressions. Remember, a diagnosis is never made based on a single test or test score. With your written permission, a copy of the report may be sent to your child’s pediatrician or to other professionals involved in your child’s care.
As you can see, reaching an accurate diagnosis of autism spectrum disorder (or ruling out the diagnosis) requires a great deal of observing, collecting, and integrating data to gain a full picture of your child. However, when armed with results from a complete assessment, psychologists can work with parents to find the right methods or approaches for building skills, promoting interpersonal communication, and enhancing your child’s overall well-being. One thing is for sure; a clear understanding of your child’s strengths and challenges puts you in a better position to advance their emotional, educational, and social functioning.
ABOUT THE AUTHOR
DR. TRACI JORDAN, Psy.D., L.S.S.P.
Dr. Traci Jordan, Psy.D., L.S.S.P. holds a dual license in clinical and school psychology, and has assessment experience with a wide range of developmental, cognitive, psychological problems and challenges. She has a lifelong passion for child development and family systems, completing pre and postdoctoral training in child clinical and developmental pediatrics before opening a private practice focused on child assessment and treatment. She draws on her 30 years of experience in assessment and research methods to develop and teach a core graduate level class in psychodiagnostics through the Department of Educational Counseling of Texas A&M Corpus Christi. She is an advocate for animal rights, volunteering as a sponsor and foster for a local canine rescue organization. Yoga, family, friends, and pets keep her centered.