What Should an Evaluation for Autism Look Like?
From finding the right clinician to diagnostic tools and interviews, understand the steps to this process.
7 min read
What You'll Learn
How is autism diagnosed?
What should an autism evaluation include?
Who can do an autism assessment?
Individuals with an array of abilities and differences in processing are included within the umbrella of autism. As a result, the appearance of this processing difference can vary greatly from person to person. If you've seen one autistic person, you've seen one autistic person, according to many diagnosticians.
Correct diagnosis of autism can be challenging due to the disorder's varied presentation. Those with autism may occasionally receive an incorrect diagnosis of another condition, such as ADHD, or be told there is nothing wrong. Sometimes those who are not autistic are given the diagnosis.
That’s why it’s important for everyone to know what the components of an autism diagnosis should be: What kinds of information should a clinician who’s evaluating your or your child be considering? How can you know whether your clinician is experienced and understands complex presentations when administering an autism assessment?
Difficulties with Social Communication
One reason for the misconception is the fact that difficulties with social interaction and communication are frequently listed as potential indicators of autism. According to neuropsychologist Susan Epstein, PhD, "There are several causes that can induce social issues." It's possible for autism to appear to be one of several modest language abnormalities. Or other illnesses, especially when they manifest in groups, such as depression, ADHD, and learning difficulties.
For instance, if a person struggles to form words or sentences, this might lead to situations that initially appear to be an indication of autism but actually stem from other factors. A person can have communication issues, that affect relationships with classmates, and, as a result, may withdraw. They appear to be experiencing social issues, but it’s more than that.
A lot of data about the whole person must be gathered and understood from different perspectives in order to make the proper diagnosis. Experts in diagnosing autism, like Dr. Glori Gray and Sarah Smead, M.S., Ed.S., suggest that you have an evaluation that goes beyond screening and diagnostic tools to provide the most comprehensive picture of what is going on.
Evaluation of Autism
Before starting a formal evaluation, initial practitioners may use a variety of screeners to determine whether a kid may have autism. Parents are required to complete some questions, while clinicians conduct others. One questionnaire used to spot warning signs is the M-CHAT, or Modified Checklist for Autism in Toddlers. The M-CHAT asks questions about behaviors that might indicate autism, but this test casts a very broad net, so it often flags children who may or may not be autistic. The Childhood Autism Rating Scale and the Ages and Stages Questionnaire, which is more of a fundamental developmental screener, are two scales that are similar.
Another screener is the STAT, or Screening Tool for Autistic in Toddlers and Young Children. Unlike the other screeners described, STAT probes for autism symptom behaviors in greater depth, but is still intended to be used as a tool to screen children who may be candidates for further evaluation. The results of a screener by themselves should never be used as a diagnosis.
Instruments for Diagnosis
If a screening tool suggests that someone may have autism, a specialist with significant experience in diagnosing autism should conduct a more detailed assessment.
A diagnostic tool like the Autism Diagnostic Observation Schedule, or ADOS-2, is frequently used as the first step in this evaluation. The ADOS is a test with many components to support a variety of children and adults. A play-based version is even available for toddlers. Depending on a child’s linguistic proficiency, there are modules for children older than thirty months that feature more discussion.
There aren't correct answers on a test like this. The objective of the ADOS is to assess the person’s social abilities and pattern-following tendencies. This indicates that the assessor is considering factors such as whether the person requests assistance, provides others with an opportunity to speak, and keeps up with subject changes.
The MIGDAS is an interview method for evaluating children and adults suspected of having autism spectrum disorders. MIGDAS stands for Monteiro Interview Guidelines for Diagnosing Asperger’s Syndrome: A Team-Based Approach. Dr. Monteiro shared that her reason for developing this tool of growing popularity was that standardized tests and checklists commonly used to diagnose autism spectrum disorders were missing the key process of interacting with individuals on their own terms. Using sensory toys and introducing topics of interest to the person, clients are better able to engage in the evaluation process and the clinician can get to the heart of each person’s pattern of developmental differences in a short period of time. The MIGDAS provides a flexible framework that allows clinicians to tailor the assessment to an adult's unique presentation and needs, as well. With adults and parents of children, this interview-based measure aims to offer a thorough and nuanced evaluation that can guide appropriate interventions and support strategies.
As Dr. Gray believes, the best practices evaluation of a child involves a team of professionals: psychologists, speech and language therapists, educational diagnosticians, occupational therapists, and other specialists. And of course, the parents are a part of the team as well.
For toddlers and young children, the Communication and Symbolic Behavior Scales (CSBS) is a useful diagnostic tool. Although this play-based instrument has research to support it, it is less frequently used than the ADOS and MIGDAS, which caters to a wider age range.
Problems with Interpretation
It is crucial to engage with a mental health specialist who has experience diagnosing autistic individuals. You should collaborate with someone who is aware of the complexities. For instance, a person with well-developed skills will be able to tell the difference between a someone who is simply timid and makes poor eye contact due to social anxiety, and poor eye contact is often found in autism.
Recent studies emphasize how challenging it is to discern between autism and other disorders, such as ADHD, even when utilizing standardized diagnostic techniques like ADOS. One study, which focused on school-aged children with excellent verbal performance, discovered that when given the ADOS, 21% of children with ADHD but not autism matched the diagnostic criteria for autism. Additionally, the timing of the diagnosis of ADHD often precedes a diagnosis of autism. In one study, children with ADHD diagnosed first were nearly 30 times more likely to receive their autism diagnosis after age 6. The delay in autism diagnosis was consistent across childhood and independent of autism severity.
According to one researcher, Somer Bishop, assistant professor of psychiatry at the University of California, San Francisco, "the minute we diagnose blindly based on score, we're going to misplace a lot of kids into groups." These tools were created to support clinical decision-making, but they do not serve as a substitute for the clinical brain.
ADOS's creator, Catherine Lord, at the Center for Autism and the Developing Brain at New York-Presbyterian Hospital, says that it's crucial to take the behavior's motivation into account. Instead of having a social deficit, an ADHD youngster may avoid an adult's gaze because they believe they have done something wrong, she says . Or, rather than being less expressive in general, a person’s face could be expressionless because she is bored or otherwise preoccupied.
Interviews
Screeners and diagnostic instruments are methods of information gathering, but they must be viewed in the context of additional data from a variety of others who know the person. For example, detailed discussion with the individual’s parents covering general development (whenever possible) and those familiar with present issues should also be part of a comprehensive examination. The interview will pay particular attention to any indications of autism. Parents may also be requested to complete specialized questionnaires in order to acquire more data.
Interviews like the MIGDAS and the Autism Diagnostic Interview, Revised (ADI-R), are frequently used in conjunction with the ADOS. If it is conducted by a psychologist with experience diagnosing autism - an interview based on the ADI-R or a parent checklist, such as the Social Communication Questionnaire, can also be successful.
It is also critical to cover early developmental information in the interview since there are numerous situations in which symptoms are more pronounced earlier (e.g., four years of age) but fade as the person gets older. Knowing about early development can aid the psychologist in making a more precise diagnosis.
If the child is old enough to go to school, it would also be beneficial for the practitioner to talk to the child's teacher to get their perspective. A visit to the child's school to observe them could be very helpful, but it is not always feasible. The psychologist conducting the evaluation will gain some understanding of what the teacher is actually observing at school, which may differ from what parents are observing, by having a chat with the teacher or by having the teacher complete a questionnaire. When evaluating an adult, then, having input with other collaterals is helpful, particularly if a parent is available to speak to the person’s early development.
Cognitive Testing
Cognitive testing should generally be a part of every assessment. One explanation for this is that cognitive testing gives the assessor a second chance to look at the behaviors and motivations, but in a new setting. The ADOS is a less organized and socially loaded test, which could be challenging for certain people. Some will perform better on a more structured cognitive test when they are answering particular questions. However, if some children don't know the answer to a particular question during standardized testing, they can become agitated and dysregulated. This information can be very helpful to the evaluator.
The cognitive testing is also important because the evaluator wants to discover more about the individual’s thought process, such as how the person plans and organizes, or how they handle challenges. In addition to assisting the evaluator in correctly diagnosing the patient, it is difficult to truly construct an educational program for them at school without knowledge of their strengths and shortcomings. This evaluation can help identify, "He can do this; he can't do that; this is what he needs to be able to accomplish that.”
Working with a Professional in Autism
Pediatricians frequently provide screenings, but if there are warning signs that suggest additional testing is necessary, it is advisable to work with a professional who has both experience and competence in diagnosing autism
Just as you would not go to a doctor for a heart transplant who’s done two or three, you want an autism expert who’s seen hundreds of kids with all different variations of needs and strengths, including neurotypical peers, differently-abled people, autistic children, etc. Such evaluators should know what to look for, including overlapping and often related presentations.
In order to assess a potential provider's experience, parents can pose several questions. For instance:
Is the provider qualified and using culturally sensitive, standardized tools that are specific to your questions?
Are you neurodivergent? Have you had any specialized training in the evaluation of autistic people?
What measures do you have planned for this evaluation?
Will you get in touch with others involved in my (or my child’s) life?
Look for a practitioner who is able to address your concerns and makes you feel at ease. Obtaining an appropriate diagnosis requires working with a clinician who takes your worries seriously and has experience evaluating autism.