Unexpected Neuropsych Testing Results
I went to return to this draft to find that I never saved it..
That is one of the worst, if not THE worst things that can happen when blogging. I’m a bit less motivated to rewrite this now, but we will give it a try!
I wrote a post about my experience with neuropsych testing this past summer. This post is going to be about my results.
My results were confusing, upsetting, and disappointing, but I do believe I grew from this experience.
I thought that neuropsychological testing would give me the final, defining, complete answer about how my brain works.
Here is where I was wrong. There isn’t one answer, not always. Not when you have complex things going on. It does bring results, it does bring answers and explanations- however, it is just one person’s interpretation of the data you provide. Other providers may interpret the data differently. Someone who doesn’t live your life or live inside your body, will only evaluate you on several days (or however long) of testing. The tests are specific and truly provide information on how your brain works, but it doesn’t always mean the results will sum up the answers to your problems. At least, they didn’t with me.
I was referred for testing with ADHD and a sensory processing disorder in question.
What stood out in my testing from the very beginning was my trauma history. This makes sense, as it certainly does stand out when people hear my story. Where things got complicated is that because PTSD symptoms may overlap with other disabilities, it can be hard to determine what is going on. My trauma became the focus of my report. I did not seek testing to find out if I had PTSD. I knew this. I have been in therapy for years doing intensive prolonged exposure therapy. I have made huge progress. Still, I believe there are things I struggle with that will always be there despite how much therapy I do. I am aware that my brain works differently. The tests revealed this as well.
The scores conflicted with the reasoning.
I scored highly for sensory issues, but did not receive a diagnosis for a sensory processing disorder.
I scored highly for ADHD (inattentive type), but did not receive a diagnosis.
I scored highly for ASD, but did not receive a diagnosis.
My new diagnosis were:
mixed receptive-expressive language disorder
social anxiety disorder
Here is the thing.. language disorders and social anxiety are common signs of ASD. I was not diagnosed because the symptoms can overlap with trauma, and trauma was what she was most confident in.
My results did not explain nor mention any answers to the struggles I sought testing for. It only confirmed I have trauma. I ask myself why I did all of the testing if she was going to question the results in the end. I shared my report with my psychiatrist. When she read the “attention and executive functioning” part of my report and also was confused that her description of the results sounded like clear-cut ADHD.
I cried for many days after receiving my report. Not only was it disappointing, it also was dismissive, and stated things about me that were not true (which reflected that the provider did not listen intently to me). It was not at all strengths-based.
When I went to my feedback appointment, I was honest with the provider that while some things did resonate, many did not. I for sure have social anxiety. It also would make sense that I would have a language disorder as it is really difficult for me to comprehend language in groups and keep up with a conversation. I also struggle with reading comprehension and auditory learning since I was a kid. I learn best visually. Those things explained a lot, but I still did not understand how that explained my other struggles. Why do I relate to an ASD diagnosis, and have to settle with the provider’s “uncertainty”? The provider said, “you’re allowed to disagree with me. I have humility. I can be wrong.” She said “All this is, is my best guess. I gave you my best, but you need to trust yourself. It’s not about what I think right now, it is about what feels right to you.” “I am providing you with part of an answer from my view, from my opinion, but it should never invalidate what you feel is true for you.”
This was nice, however..
How do I trust myself when what I believe is going against what a professional tells me?
This has been a question I have been asking myself since. I went to see someone for their opinion, and they want me to trust my own?
It is one thing to get a diagnosis that surprises you, but to have the explanation bring clarity and hope.
It is another thing to get a diagnosis that surprises you, and for it to not even resonate with your experience.
I decided to seek another opinion.
I want a chance to get a report that does resonate, and to have an idea of the best ways to support myself going forward. I am not doing a full neuropsych evaluation again. I decided that what I want to understand the most, is my scores around ASD. I am going to get assessed by someone who solely does ASD assessments. I found a place that is knowledgeable about trauma and autism, and how the diagnosis can be missed in high-masking adults (especially women). It was advised to me to seek another opinion and I decided that it is worth it. I have started to accommodate myself in my life, but I want to make sure I’m getting the right support. My struggles may be psychological, but there is a neurological component I need to understand as well. Life is hard enough, I don’t have to make things harder for myself.
The next updates to come will include my autism evaluation. I didn’t go through all of the exhausting and difficult tests just to “accept” a report that didn’t provide a thorough explanation. I don’t want a provider to make an educated guess just because I have a trauma history. I want someone to hear me, and what is happening for me, not what has happened to me.
