The Relief of a Diagnosis (Part 2)

In Part 1 of this miniseries, I wrote about what led up to my decision to get a neuropsychological evaluation. Now, I’ll explain what the testing’s purpose is and describe my experience.

First, it’s worth noting that there are both neuropsychological assessments and evaluations. A major difference between them is the length, with assessments being far shorter. While assessments can be helpful, they often aren’t robust enough to provide official diagnoses. The results of an assessment will be adequate for some folks, e.g., if they’re just looking to rule out or confirm something their care providers already suspect. However, a desire for more thorough testing following an assessment may remain since they collect less comprehensive data. Getting a complete evaluation is also beneficial for folks seeking disability benefits; in some cases, it may even be necessary.

Second, some words of warning: Unless a neuropsychological evaluation is deemed medically necessary to make a diagnosis, most insurance companies will not cover the service. This impacts cases of attention and learning issues, i.e., my evaluation was not covered because the primary investigation related to ADHD. Unfortunately the out of pocket cost is likely to run between $2,000-4,000, possibly more if the provider you work with has multiple consultation visits before and after your testing.

Also be forewarned that there is high demand for these services and limited practitioners. In many rural areas, it’s impossible to even find a provider. In Southwestern Pennsylvania, there is only a short list of companies to consider. The first two I called limited evaluation appointments to their existing psychiatric clients. Others offered to put me on their waitlist, meaning in 6-12 months they’d call to schedule me for another 6 or more months out. Once I finally found a provider willing to work with me – shout-out to Dr. Glen Getz at Neuropsychology Specialty Care! – there was still a five-month wait until the appointment.

Background on Evaluations

Clinical neuropsychologists have expertise in the applied science of brain-behavior relationships. They examine patients with possible neurological, medical, neurodevelopmental, psychiatric, and cognitive conditions.

The evaluation looks for the strengths and weaknesses of a person’s brain. The testing can also illuminate whether the patient’s performance reflects normal or abnormal central nervous system functioning. A practitioner can identify how neurocognitive processes relate to an individual’s behavior and determine what difficulties are encountered for what reason(s).

Neuropsychological evaluations may determine the cause of issues related to:

• Intellectual abilities
• Learning abilities
• Sensory processing functioning and speed
• Motor function and deficits
• Executive functions, such as organizing and planning, time management, multitasking, self-control, and problem-solving
• Behavioral concerns
• Hyperactivity and inattentiveness
• Language abilities, delays, or difficulties
• Visual-spatial skills
• Abstract reasoning and analysis
• Information processing
• Memory
• Mood

The Evaluation Process

While assessments may take one to three hours, a full evaluation is an all-day affair.

Mine began with about two hours of interviewing, which included many follow-up questions to responses on a questionnaire submitted a week before the appointment. We first talked about general medical history and any psychological care received by myself and my family.

The remainder of the time was a deeper dive into exploring what:

• Traumatic events occurred throughout my life
• My academic and work performance was like
• Symptoms/issues that prompted me to pursue testing
• History I had with similar symptoms or issues in my life
• Types of life changes I’d experienced recently
• Concerns I had about my brain functioning, emotional well-being, and mental health
• Types of treatments I’d already explored

Following the interview, there were nearly six hours of testing. Some of the activities reminded me of the multiple-choice standardized tests from high school (e.g., the SATs or the Armed Services Vocational Aptitude Battery). In contrast, others felt more like puzzles and games.

Below are some of the activities I completed throughout my appointment:

• Memorizing lists of words and numbers.
• Reorganizing a list of words and/or numbers following specific rules – e.g., taking a series like “A 9 Z 2 J 7 L 4 E 1” and reordering it in alphabetical and numerical order, so: “A 1 E 2 J 4 L 7 Z 9.”
• Naming as many words as possible that begin with a particular letter in a timed period.
• Defining lists of words and guessing the meaning of words I did not recognize.
• Explaining what two words have in common – e.g., cats and dogs are both pets.
• Timed math problems.
• Drawing a diagram while looking at it, then drawing the image from memory 15 minutes later.
• Listening to a story and listing as many details as possible, then telling the story 15 minutes later from memory to the best of my ability.
• Being shown several images sequentially and predicting which of four options would be next.
• Reviewing over a hundred descriptions of behavior, mental functioning, and emotional regulation, and identifying which were true for me as a child, currently, or both.
• Identifying whether I agreed with various described attitudes and beliefs all, some, or none of the time.

The practitioner took copious notes throughout my testing. Data was collected about my accuracy in answering questions and the speed with which I navigated activities. My posture, tone of voice, facial expressions, eye contact, body language, and other aspects of my demeanor were also observed.

At times, it was obvious what areas of my brain functioning were under scrutiny. However, I felt uncertain about a few things I was asked to perform. I even wondered if some sections were intentionally nonsensical to assess how I’d navigate ambiguous or abstract situations.

It’s common for people to wind up exhausted after a full day of neuropsychological testing. Some folks also get frustrated or mad if the activities don’t make sense to them or involve skills they aren’t strong in or dislike. Although I enjoyed most of the “brain games” and needed few breaks, I got extremely annoyed with the second to last test, which was a game where I wasn’t given any guidelines on the rules or how to play.

On each turn, I was shown a card and told whether I chose the “right” or “wrong” answer among four options. After a few rounds, I figured out the trick and was delighted to get five in a row correct. Suddenly, though, I started getting wrong answers again and grew confused. I cautiously chose my subsequent few responses and once again unlocked the key, or so I thought because I got several consecutive answers correct using the new logic.

Having realized the game’s rules would periodically change, I stayed on guard and quickly pivoted my approach as needed. This worked great for many rounds, then things seemingly went haywire. After nearly a dozen in a row that I guessed incorrectly, no matter what logic I applied, I grew suspicious that now the game had no rhyme or reason, and I was just being told anything I chose was wrong. So, I finally quit trying and gave random answers until the game concluded. I’m still intrigued and wonder what was going on in that activity!

I went into the evaluation unsure what to expect and it turned out to be a fascinating experience. Five weeks later, I received an in-depth report with observations and feedback from the clinical team about my engagement and performance, plus a list of confirmed and potential diagnoses. Stay tuned for the next installment to find out what I learned.