I was diagnosed Autistic on September 12, 2016 (nearly 9 years ago now).

At that time, my assessment noted that I “often felt as if things around me were strange, unreal, or foggy.” Back then, I didn’t understand the significance of this note (or the other notes further on in my report, which suggested some disconnects between my mental and physical experiences).

When I went in for my Autism assessment (after being referred by my primary care doctor due to my rapidly declining physical and mental health), I had insurance, and thought my Autism screenings would be covered… but I was wrong.

Unfortunately, I soon found out (when it was time to pay for my Autism screening) that this assessment wasn’t one the insurance company found “necessary for me” (due to me being an adult and, in adulthood, this diagnosis would not serve as a gateway to any “services” or “treatments”).

Additionally, while my provider did cover physical health diagnostic services, mental health services were only covered after I had met a $7,000 mental health deductible (that was separate from the physical health deductible, which I would never hit).

So this service was (had the insurance company not found it to be “unnecessary“) would have still been “on me” to cover, leaving me stuck putting the several thousand-dollar expense for this screening on a credit card, wiping out any funding I would have had to seek out help after I was finally diagnosed.

For example, it was suggested I seek out help from “a doctoral-level psychologist who specializes in the treatment of Autism and anxiety” to help with my “psychological stress” and “Biofeedback” to help me “learn emotional self-regulation strategies” (because I had almost no tools and skills for self-regulation back then).

“Occupational therapy to address sensory sensitivities” and a “biomedical workup” were also recommended. However, I’d already spent more than I had available to me at the time (maxing out my credit card to fund my assessment), leaving me unable to financially access most of the suggested resources and tools (which my insurance company had claimed didn’t exist for adults), except books and websites, which were more freely available.

Diagnosed as an ADHD-er

Years later, in July of 2021, I was assessed for (and diagnosed with) ADHD (combined type), and once again, there were signs of “more happening” with me that needed further evaluation.

Specifically, my report said:

“Considering all reported issues (including the age of onset of ADHD symptoms), the presented symptom profile appears most consistent with the listed diagnostic impression. However, given the presence of multiple issues, I recommend follow-up with a physician/psychiatrist and/or psychologist for additional/comprehensive evaluation to clarify the primary diagnosis at the present time and to determine the need for treatment of all reported issues.”

Additionally, under the header of “Screening for Dissociation,” there were, once again, signs.

I was “feeling ‘out of it’, having out-of-body experiences, or being detached from sensations throughout the day, “frequently (daily) experiencing deja vu and “Feeling in a fog” (also daily).

However, since I was still in denial about “how bad” my childhood had been, and low on funds (and had to take out a payment plan to pay for my ADHD assessment), I once again found myself in a place where I had to pause my search for answers (since my health insurance provider still didn’t offer mental health services and, once again, I’d had to fund my own mentalhealth care dispite paying my expensive health insurance premiums each month).

During my ADHD screening, there was one question that stood out to me more than others, asking me if I had memory problems “beyond normal forgetfulness” (something I had no frame of reference for).

My Day-to-Day Memory Was Like “Swiss Cheese” (Full of Holes)

From a young age, my everyday memory had always been questionable to the point where I didn’t trust it… But that was “my normal“.

For example, when I was very young (elementary school or younger), while watching one of my favorite cartoons, my grandmother once asked me “what I had been watching” during a commercial break.

Despite being very engaged in a show only moments earlier (and feeling as if I had thoroughly enjoyed what I was watching), I couldn’t for the life of me remember what I had been watching, so I responded, “I can’t remember, but it was really good!“

To which she replied, “You’re too young for your memory to be so bad,” leaving me perplexed and concerned that there might be something very wrong with my memory.

As I grew older, my day-to-day memory continued to have gaps, especially when I was anxious or switching between different activities; however, this was all very normal to me.

I was keenly aware that my memory was not reliable.

I became a master of hiding my confusion and inability to remember things, leaning into any tools I could find to manage my “Swiss cheese memory” (full of holes and pitfalls), leaving nothing important to chance.

It would be as if something was randomly “splicing” random clips and moments out of my day, especially if I got anxious or triggered, but also at other inconvenient moments.

My mind would just “float away,” and then I would just “float back into consciousness,” which made tasks that required focus and attention (like driving or heated conversations) challenging (and sometimes dangerous).

I learned not to trust my own memory, so I kept notes, photos, timers, alarms, and schedules that I trained myself to check regularly, ensuring nothing would slip through the cracks.

I didn’t know back then that the “holes” clipped out of my day-to-day life (or the amnesia around many of my childhood experiences) were due to disassociation, partially because I didn’t know what disassociation was, and also because my mind had kept most of the worst and most painful traumas away from my consciousness, causing me to minimize the traumatic experiences I’d encountered growing up.

One day, everything changed.

Then, recently (this past month, after more than a year working specifically on recovering from my frequent dissociative episodes and working to recover and integrate some of my most painful childhood memories), something unexpected happened:

My brain stopped dissociating constantly, and my day-to-day memory improved so drastically that I finally had context for what “beyond normal forgetfulness” actually meant.

I was no longer “forgetting what I was doing” any time someone interrupted me, and even if interrupted, I now could easily recall what I’d been doing before the interruption (something I don’t remember being able to do previously).

I started being able to recall my days in sequential order, stopped spacing out, and even stopped going on autopilot while driving, stressed or triggered, and during other day-to-day activities.

It was like something inside my brain had been switched on.

Before, when I struggled to “stay in my body,” I used to be afraid to drive with another person in the car (because they might trigger, or distract me, or cause my mind to “reboot“).

Back then (when I was dissociating heavily), I also had to keep my GPS on (even when navigating to familiar places), because if I spaced out and “came back,” I sometimes wouldn’t know where I was going or how to get there… but I don’t have this problem anymore.

Many people “go on auto-pilot” when driving, so I never thought this was particularly concerning (other than the fact that sometimes I would get so lost in my head that I would forget I was driving… which I attributed to ADHD and did my best to “reduce distractions” accordingly).

Dissociation is “a defense mechanism where the mind detaches from thoughts, feelings, memories, or even a sense of identity to protect itself from overwhelming trauma.” This “shutting down” or “checking out” can look incredibly similar to the executive dysfunction and inattention seen in ADHD.

Next comes the part I’ve confided in a few close friends but have been afraid to share…

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