Why Delay a Diagnosis?

As part of NESCA’s ongoing blog series addressing some of the most frequently asked questions about neuropsychological testing, today we are addressing why neuropsychologists may choose to delay a diagnosis.

At NESCA, I often supervise neuropsychology trainees, and one of the first questions I asked them is: “What is the goal of a neuropsychological evaluation?” I often hear answers, such as “to identify strengths and weaknesses” or “to determine appropriate diagnosis.” These answers are not wrong, per se – they are what we are taught in graduate school. However, I often explain that while these may be part of our goal, the primary goal is to tell a client’s story and help them understand a path for moving forward. While this may sound a bit aspirational, it is the approach that best appreciates developmental, systemic, and individual factors that may come into play. As addressed by Dr. Moira Creedon in the first blog within this series, this is also one of the reasons why neuropsychologists want to review all prior evaluations and documentation, as this helps to elucidate the developmental timeline.

When a neuropsychologist is approaching an evaluation through the above developmental lens, it is not always possible to land on a specific diagnosis. This may sometimes be referenced as a “deferred diagnosis” or “differential diagnosis,” meaning there is evidence to possibly support the diagnosis, but not enough evidence at this time to decide for certain. Another term that may be used is “provisional diagnosis.” This indicates that there is enough evidence to support the diagnosis at this time, and there is clinical utility to diagnosing (e.g., informs intervention, qualifies for services, etc.); however, more information or monitoring may be needed to be completely confident, so future reassessment is warranted.

There are several reasons why a diagnosis may be deferred or deemed provisional. First, children are constantly developing, and sometimes the challenges they are demonstrating may be developmental in nature. This may be particularly so when evaluating young children. For example, if a young child has significant language delays, it may be difficult to assess whether they are also on the autism spectrum or have early signs of a learning disability, as their observed weaknesses in these areas may be accounted for by their language. Often times these are children who may “catch up” in skills once provided intervention, meaning their difficulties were related to delayed acquisition, rather than an being an issue of innate impairment.

Similarly, another reason diagnosis may be deferred is if a child’s self-regulation challenges interfere with their ability to engage in typical daily demands. For example, for a child who has significant anxiety or behavioral dysregulation that interferes with their ability to engage in school, it may be difficult to determine if academic delays are related to a learning disability or are a secondary consequence to their dysregulation. While provision of targeted instruction may still be necessary in order to help the child regulate and close gaps in skills, a full understanding of their innate learning profile may not be possible until such supports are in place.

Deferred diagnosis is quite common when more significant psychiatric diagnoses are in question, such as whether a child or adolescent is presenting with a mood or thought disorder, such as bipolar or emerging psychosis. There are many other conditions that may “look like” these disorders, including trauma or co-occurring anxiety and ADHD. When diagnosing more significant, often life-course disorders, it is important to ensure that all other potential explanations are identified and addressed. This is important for informing the appropriate treatments while also allowing the evaluator to outline some of the “red flags” that should be monitored by the client, their parents, and their care team over time.

Another reason why a diagnosis may be deferred is that there may be systemic factors at play. In other words, there may be things going on within the child’s home, peer setting, school, or other surroundings that interfere with the evaluator’s ability to understand the child in isolation. This is a particular issue when evaluating a client with a trauma history. Developmental trauma can often “mimic” other symptom profiles, and so it may be important to first address issues within the system before providing a diagnosis for the individual.

There are other less common situations in which diagnosis may be deferred, but they warrant mention. One is when the neuropsychologist is concerned about possible malingering, which is when certain symptoms are being falsified or exaggerated for personal gain (e.g., a child with learning disability exaggerating mood symptoms to avoid school). Another less common situation is when prescribed medication or recreational drugs may be inadvertently causing the symptoms of concern (e.g., depression occurring as a side effect).

A final reason why a diagnosis may be deferred is simply that things can sometimes be messy. We often evaluate children and teens who have several presenting concerns, and sometimes it takes time to peel away the layers of the onion. In any of the above scenarios, we start with “what we know” and then describe “what is possible.” Regardless of whether or not a diagnosis is certain, as neuropsychologists, we are still able to tell the client’s story, describing how they “got here” and how to move forward. This developmentally-sensitive approach allows us to make recommendations based on their need, not just their diagnostic label. We are then able to assess how their profile and symptoms change as they access intervention. It is for this reason that we enjoy the opportunity to develop long-term relationships with our clients, helping to monitor growth over time. Children do not develop in one finite time point, and the neuropsychological evaluation process sometimes has to be patient and continue to develop alongside them.

 

About the Author

Dr. Angela Currie is a pediatric neuropsychologist at NESCA. She conducts neuropsychological and psychological evaluations out of our Londonderry, NH office. She specializes in the evaluation of anxious children and teens, working to tease apart the various factors lending to their stress, such as underlying learning, attentional, or emotional challenges. She particularly enjoys working with the seemingly “unmotivated” child, as well as children who have “flown under the radar” for years due to their desire to succeed.