The Process of a Diagnosis
Updated: Oct 26, 2019
In May, I wrote on this blog about my decision to pursue a diagnosis for Autism Spectrum Disorder, and what that meant to me. Was I locking myself into a cage, or turning the key to unlock a door to new understanding? As you might imagine, it had taken a year or two of internal debate to get to the point where I finally felt ready to decide. I decided to take the leap.
Now, I want to share some of what the process of diagnosis was like for me - as an adult, and as a woman, and as someone who has cultivated so many layers upon layers of masking and coping strategies to interface with a largely neurotypical environment.
First, there was the task of finding the right diagnostician.
This was more difficult and nuanced than one might imagine, as there is still so much variety in the way medical professionals recognize, diagnose, treat, and even just think about Autism. For many, if someone was not diagnosed by the age of 3, then they don’t have Autism, plain and simple. For others, if someone doesn’t present very significant “challenges” in very particular areas, then they don’t have Autism. For some, the belief is still that Autism is some kind of terrible disease (which it most definitively is NOT), and so even if an adult were Autistic, why would they want to get the diagnosis now if they’ve lived this long without it?
There was also also the fact that so much of the diagnostic criteria, and so much of diagnosticians’ experience, is centered around childhood diagnosis, and male diagnosis - both of which are similar and dis-similar in many different ways to adult diagnosis (taking into account more highly developed masking and coping strategies) and female diagnosis (taking into account many cultural differences between gender representations that can result in very different presenting “symptoms” of Autism.)
At last, I found a practice with specialty in both adult diagnosis of autism, and diagnosis of autism in women: CBT Spectrum, which I would highly recommend to anyone (regardless of gender or age) who is looking for diagnostic support in New York.
Testing, Testing, 1, 2, 3
Then, there was the actual evaluation itself.
I really didn’t know what to expect in the evaluation. I imagined having to sit in front of a computer and identify whether a facial expression was “happy“ or “sad,” for instance, or having to send questionnaires to my mom to fill out about my childhood.
In reality, the diagnostic evaluation did in fact include much more nuanced, relevant versions of both of these tropes. I did indeed sit with the doctor doing the evaluation and go through a series of identifying different body language and vocal inflection cues (by way of vocal recordings and pictures of faces/body language) to interpret meaning and emotion - or at least, to attempt to interpret the right meaning and/or emotion. Rather than sending a questionnaire to my mom, my husband sat in as part of an hour-long, 3-way interview that covered many facets of my daily behavior, home and work life, thought process, emotional intelligence, and more, from both my perspective and his, as a “neurotypical” “third-party observer.”
In addition, there were a series of self-assessments that I completed, both in long-form narrative and in "on a scale from 1-5, how accurately does this statement describe you?" form, and spanning from present day back to what life was like, and what I was like, growing up. I self-rated my daily living skills, my social acuity, my preference for routine v. spontaneity, etc. And my husband filled out one rating scale about my behaviors from his perspective, as well.
Give It To Me Straight, Doc
Finally, there was the process of receiving the results.
There were a few things that surprised and delighted me about the results-receiving process - like the fact that it included an hour-long in-person conversation with the doctor who had conducted the evaluation, including her interpretations and suggestions of relevant resources, etc. It wasn't just getting a sheet of paper with "Autism Spectrum Disorder" stamped on it - it was a well formulated, thoughtful, and cohesive conversation about areas where I present particular struggles, areas where I am strong, and tools I can begin to employ in order to be more successful. What was even better: the conversation included my husband, whose input and support has been and continues to be essential throughout this entire process.
To my surprise, I had actually gotten 16 out of 24 of the facial expression / vocal inflection exercises correct - though, as the doctor made sure to note, it was not a timed test, and she witnessed me going through a verbal process of elimination out loud as I looked at each page. (AKA: "Well, it's definitely a negative emotion, but is it anger, or disgust? The eyes are saying disgust, but the mouth is more anger...") In reality, we don't usually get a few minutes to internally process what someone's face is telling us, and what emotion they might be feeling. You kind of have to know right away, or your chance to react correctly in the moment is lost. So although I managed 66% (C-?) on that particular test - the result of years of study and practical experience - I would not have gotten nearly as many correct if I hadn't had the time to reason out each problem.
The results conversation also included discussion of several community resources open to me, like support groups and specific books. This is especially helpful now that I know areas where I can specifically improve, such as in executive functioning and in building a personal social life that works for me. I am excited to make use of these resources in the coming months and share more about my experiences with them here. =)
In the end, I found the diagnostic process both enlightening and enjoyable, I think in large part thanks to finding the right doctor to do it, according to me and my particular situation. It feels good to have it done - and to learn so much more about myself along the way.