The Relief of a Diagnosis (Part 3)

In the first installment of this mini-series, I explained why I decided to get a neuropsychological evaluation. In part two, I described the experience of having one. Here, I share the findings.

A Disclaimer About Evaluation Findings

First, some framing is necessary. Many disorders have overlapping symptoms and trauma-related symptoms can also mimic mental disorders, so a neuropsychologist may forego treating an evaluation’s results as a conclusion.

They might instead express the need for a patient’s care team to use the data collected to inform ongoing diagnostic work and treatment plans. On the other hand, a patient with apparent symptoms that align with brain functioning in specific ways and neatly line up with a single disorder may get a singular result.

There are also folks who arrive with a suspected diagnosis from long-time providers and receive a confirmed diagnosis after testing that otherwise would not have been possible in absence of their prior treatment. This is especially likely in the case of a disorder like ADHD, which is most often diagnosed by mental health practitioners based on reported and observed behaviors since there is no single test that can diagnose it.

My point with these observations is twofold: First, be aware that you may not need an evaluation to receive a diagnosis. Second, know that expecting an evaluation to provide all the answers you’ve been looking for may lead to disappointment. 

This testing is typically just a piece of the puzzle. With or without it, you’re still going to want to work with other mental health professionals (e.g., psychiatrist, counselor) to figure out what’s going on with you. Even if you end up with a clear-cut diagnosis, this remains the best path forward because trained clinicians can help you understand and manage the types of disorders that an eval may reveal. While you certainly can try to go it alone, the journey will be far more difficult.

The Verdict

As suspected, the results of my evaluation rendered a high enough level of confidence that I received a confirmed ADHD diagnosis (combined presentation – moderate). Some of the factors contributing to this included:

• Several issues reported during my interview that were then observed throughout testing, such as:
  • significant difficulties in inattention and memory, with symptoms suggesting a predominantly inattentive presentation.
  • difficulties maintaining concentration (e.g., daydreaming, easily distracted, forgetfulness, variable organizational abilities, difficulty completing unstructured tasks).
  • being restless and overly active.
  • occasional excessive talking.  
• Other symptoms I reported as frequently present, such as:
  • over-extending my capacity and feeling stretched thin and ineffective, leading to feelings of overwhelm.
  • tendencies toward significant impulsivity, energy, and hyperactivity.
  • emotional regulation difficulties (e.g., heightened, rapid, and intense mood swings).

“Her personality style is likely to be adventurous, risk taking, and impulsive.”

It’s of note that the Diagnostic and Statistical Manual of Mental Disorders, 5th edition (DSM-5), which is the reference point that most mental health professionals use in the US, doesn’t include deficient emotional self-regulation (DESR) as a symptom of ADHD. However, DESR has become more widely accepted as a core aspect due to scientific research documenting that 25-45% of children and 30-70% of adults with ADHD experience it.

The emotional regulation issues I experience are likely not just a result of ADHD, though. Throughout the interview, the doctor noted that the stressors and trauma present throughout my life have been exceptional. At different points in collecting details of recent events, he sought clarification that everything I listed was just in the past three to five years and freely commented on how dramatic the cumulative happenings were. Then, as he learned about earlier complex trauma from childhood and the whole getting hit by a bus thing in my twenties, he repeatedly echoed his feedback that I’d been through a whole lot of shit for one person.  

While it was validating to hear a mental health professional affirm what I’d often felt – that my life was in-fucking-sane at many points – it presents a challenge for diagnostic work. In some cases, trauma may manifest in ways that get mistaken for symptoms of other disorders and lead to misdiagnosis; or, on the other end of the spectrum, it can lead to mistakenly attributing symptoms to the trauma and missing a primary disorder. This is especially common with diagnoses like depression, anxiety, post-traumatic stress disorder (PTSD), ADHD, autism, bipolar, and many others.

For these reasons, there was a prominent significant disclaimer noted in the conclusion and recommendations of my report: “[The patient] described a somewhat complex history including complex childhood trauma, mood instability, heightened energy levels, interpersonal concerns, and periods of significant anxiety. Given this, her treatment may require some trial and error in order to be the most effective and fully establish diagnosis.”

Most folks are familiar with PTSD, which can arise after a singular traumatic incident. There’s less awareness and recognition of Complex PTSD (C-PTSD), which is related to a series of repeated traumatic events or one prolonged, ongoing event.  

“C-PTSD can happen to anyone who has been exposed to long-term trauma, but it is more often seen in people who experienced trauma during an earlier stage of development, or were abused by someone they thought they could trust, such as a caregiver or protector. Because of this, often the impact on the nervous system around attachment or relationships becomes more deeply ingrained.”

PTSD UK

C-PTSD is actually not yet included in the DSM-5, so the label I instead received was “Unspecified Trauma- and Stressor-Related Disorder.”

“[T]his complex trauma likely impacts her current and historical presentation…it is also likely that this history of concerns has exacerbated her emotional difficulties and any diagnoses she has been provided presently or in the past.”

The report goes on to cite research suggesting that trauma can mimic many other psychiatric disorders and therefore they were not providing additional diagnoses due to the complexity of my symptoms. However, they noted that the findings of my testing were “significantly above established thresholds consistent with Autism Spectrum Disorder-related symptoms.” Further, several aspects of my self-reporting reflected sensory motor issues, social anxiety, an interpersonal style that may be somewhat distant, and circumscribed interests, which are restricted and repetitive behaviors that occur commonly in individuals with ASD.

There were also elements of hypomania and/or mania present in my interview and self-report measures on the questionnaires. These are conditions in which a person displays a heightened level of energy, activity, mood, or behavior beyond what is typical for them. While these elevations may be a result of ADHD and/or current stressors, they are often experienced by people with bipolar disorder.

In regard to my potential for ASD, bipolar, or other disorders, the report concluded with a recommendation that providers familiar with me monitor my mood and presentation, as well as assess whether symptoms persist upon treatment over a more extended period.

As the title of this series alludes to, there was relief found in reviewing the report and getting a better idea of what is – and might – be going on with me. Knowing is half the battle, right?

That said, gaining both new and potential diagnoses also opened up several cans of worms. In the next installment, I will share more about how I felt receiving this news, some of the processing experience, and updates about how my life has changed.