PFA Tips: What to Expect at an Autism Evaluation
By Sara Shakin, MD, Kennedy Krieger Institute/Johns Hopkins University
You may have some concerns that your child has autism, or maybe it was your school or pediatrician who brought up these concerns. It was suggested that the next step should be having your child go through an autism diagnostic evaluation, but what does that even mean? While it is normal for this process to be overwhelming and even scary at times, understanding what is going to happen can help to alleviate some of that stress.
What is the purpose of a diagnostic evaluation?
Unlike many medical conditions, there are no labs or medical tests that can be used to diagnose autism. In order to determine if your child has autism, it is important to evaluate your child’s social interactions, communication, and use of repetitive behaviors.
Leading up to the evaluation
You may be asked to fill out forms regarding your child’s medical and developmental history prior to coming in. These forms are often long, however, they include a lot of important background information about your child that will help evaluators know more about your child before the day even begins. They avoid extra time being added to the evaluation as it can already be a long day.
What happens at the evaluation?
Throughout the day there may be a combination of multiple interviews, questionnaires, and discussions that take place. While there is not only one way to diagnosis autism, one common evaluation tool is called the Autism Diagnostic Observation Schedule (ADOS). This includes a combination of games and conversations with the child that are all based on the child’s age. Parents are included and stay in the room with younger children, while older children will complete this alone with the evaluator. This is a standardized tool that evaluators use to see if the child’s behaviors and interactions are consistent with autism. Throughout the day, parents and the child may be given other questionnaires and have discussions that provide further information about the child’s language, behavior, social skills, and daily living activities.
How can I help prepare my child for the evaluation?
Depending on your child’s age, it may be a good idea to let your child know that they will be coming in and getting to talk to and play games with a bunch of different people. Discussing this with your child prior to the evaluation can help alleviate some of the discomfort of a new and unknown setting. During the exam, evaluators are trained to adapt to meet the needs of your child. This may include taking breaks if needed, allowing the use of headphones to reduce external noise, or other accommodations to help your child be the most comfortable.
Who completes the evaluation?
Anyone trained in autism diagnostics can complete the evaluation and often times a team of multiple providers works together to complete the evaluation and make the diagnoses. Some of the people that may be involved include medical doctors, clinical psychologists, and speech language pathologists.
How long does an evaluation take?
While it depends on what tests the evaluators choose to perform as well as the age of the child, most evaluations take between 2-6 hours. It is best to discuss with the place of evaluation what to expect in terms of the length of the day prior to your visit. As it is often a long day, it may be useful to bring snacks and other forms of entertainment to be used for breaks.
What happens after the evaluation?
Usually a follow up visit needs to be scheduled on a separate day so that there is time for all the tests to be reviewed by the providers who were involved in the evaluation. At the follow up visit, the results will be discussed including the child’s diagnosis, a discussion of the child’s unique strengths and weaknesses, educational planning, resources for the family, and next steps to help the child. Next steps may include further evaluations or therapies such as speech/language therapy, occupational therapy, and ABA (applied behavior analysis) therapy.
What other areas are being evaluated?
Because autism is a developmental disability the evaluation usually includes tests of language, intelligence, daily living skills/activities, attention and memory. While these areas are not necessarily needed to diagnose autism, they help to better understand your child and guide treatment.
If not autism, what else could it be?
It is important to distinguish autism from other conditions that may lead to similar behaviors as autism such as a hearing impairment or intellectual disability. There are also many medical conditions that could lead to overlapping symptoms. For example, ADHD or anxiety may also lead to problems with impulse control and behavioral outbursts. While the main purpose of the evaluation is to determine if your child has autism, there are many diagnoses such as these that may be given to your child instead of autism. These may also be co-occurring conditions with autism. That means it is also possible that your child is found to have both autism and something else as well.
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