Sifting through the US CDC’s official diagnostic criteria for autism ~ Part C: (yeah…about that ‘masking’ thing…)

This post is the fifth post in a multi-post series in which I’ve interpreted the United States’ official CDC criteria for Autism Spectrum “Disorder” and applied it to my own situation.  As I mentioned in the other posts (but will repeat for the benefit of those for whom this is the first post they’ve seen), I’m writing this series with two goals in mind.  The first goal is to get my own thoughts on written record, to assist me during times in which my words might fail or my brain might go blank.

The second (and more important) goal is that it can be tough to find information about this subject as it applies to adults (particularly those who have “adapted” by learning to “mask” or “act” or otherwise downplay their natural tendencies, which often makes a diagnosis tough, because the CDC criteria may not appear to be applicable at first.

But in many situations, when one considers all of the forms in which these criteria may manifest, they actually can be applicable.  Without knowing what they might look like in “real life”, though, it’s tougher for unrealized Aspie/autistic people to realize they’re on the spectrum in the first place, and even if they do come to realize it, it might be tougher still to obtain an accurate diagnosis.

This series is meant to provide one real-life example (albeit just one, and we’re all different after all, so my manifestations/details will likely not be the same as others’). 🙂

The US CDC’s official criteria are spelled out in five parts, labeled A through E.  The previous post dealt with Part C, which stipulates that “symptoms must be present in the early developmental period” in order to be considered for an autism spectrum diagnosis (as opposed to being acquired later in life, which would mean that although the person has Aspergian/autistic traits, it’s not true Asperger’s/autism, because by nature, spectrum conditions are neurodevelopmental and thus, the traits will reveal themselves early on).

That does not necessarily mean, however, that those traits are actually realized/recognized for what they truly are.  Aspie/autistic people get “missed” and misdiagnosed (with something else) all the time.  Many Asperger’s/autism traits overlap with (share traits in common with) other conditions, such as ADHD, sensory processing disorders, social anxiety disorders, and other such conditions.  This misinterpretation–and the subsequent misdiagnosis–happens particularly to females, and frequently.

So, just because nobody picked up on the early manifestations of Asperger’s/autism when a person was young doesn’t mean that they’re not actually on the spectrum.  With so many other closely-related conditions (at least in terms of observable symptoms) to choose from, selecting the right one can be an arduous, time-consuming, and subjective process.

And this leads us to the next caveat: over time, an Aspergian/autistic person may “learn” to “mask” their true inclination or “act” like other people, in order to “fit in”, be accepted, avoid getting bullied (as children), or “function” (as adults).

The newest version of the diagnostic criteria includes the phrase “…or may be masked by learned strategies in later life”.  I’m relieved that the American Psychiatric Association elected to include this; it’s an extremely important aspect.  In fact, I felt so strongly about this single phrase that I felt it deserved its own post.

I’ve read a fair amount of firsthand ActuallyAutistic accounts/examples (and opinions on) this topic, and there’s a lot of excellent writing out there about this.  Some point out that “masking” may be better described as “acting”, and proceed to illustrate the distinction between the two.  And that’s an excellent point; I don’t disagree with that.

Personally (and I’m only speaking for myself with the total amount of information I currently have) I haven’t been able to tell a difference (for me) between masking and acting; to me as things stand right now, I experience them as one and the same.  I am beginning to see what some of the other writers on this subject mean when they say that they’re not masking who they are; rather, they’re acting like someone they’re not.  I don’t disagree with that, either; my own opinion is beginning to evolve toward that viewpoint as well.  Right now, however, I tend to see the two concepts (masking and acting) as simultaneous phenomena; I have not been able to experience one without the other.  In order for me to successfully “act” like someone I’m not (which I’ve done, chronically), then I have to successfully “mask” who/what I really am, and vice versa.

The downside is, sometimes we’ve masked and acted so successfully (at least outwardly), and for so long, that we may forget who we really are.  We may bury certain behaviors, thoughts, or traits that set us apart too obviously from “the rest of the world” so thoroughly that the idea of Asperger’s/autism may never even cross a diagnostic professional’s mind.

I wonder if that’s a major contributor to the under-diagnosis of adults, females, and especially adult females?  After all, if we’ve “made it through life” thus far, “how autistic” are we “really”?  (Those words/phrases are put in quotes because the truth is, we are Aspie/autistic, we’ve been that way all along, but those words phrases may come up if/when we might be playing devil’s advocate with ourselves, or someone else might be playing devil’s advocate with us.)

For a while (38 of my 39 years, and then subtract two more years for my lack of recollection of the first two years of my life), I hadn’t even–ever–considered that I might be on the spectrum.  I was completely oblivious an unaware.

What I did know, however, is that I was different.  I’ve always known that.  I’ve never been able to fit in.  I’ve never possessed the natural social graces or charisma or other qualities/skills that made it easy for me to communicate, relate, and make friends.  It always felt to me like a “mental block”, one that wouldn’t budge no matter how hard I tried.

Near the end of Grade 5 (elementary/primary school, during which time I was 11 years old), I made the conscious decision to force myself to “extrovert myself” (yes, the word “extrovert” being used as a verb in this case).  I forced myself to walk up to the other girls in class and start talking to them, to listen and join in on their conversations, to ask if I could play and hang out with them.  I forced myself to dress like they did and become interested in the same things as they were, to take an interest in the topics they were talking about.

It was very awkward at first.  I was navigating through uncharted territory, and it was odd and terrifying.  I kept all of that inside, compacted as far down as I could, and tried to muster the courage despite feeling like I was swimming upstream against the forceful tides and currents (of what my true nature was).  I went against everything I was, everything that made up my core.  It took a lot of strength and a lot of energy.  I did my best to appear “normal”, but I’m pretty sure I wasn’t completely “successful” at doing so.  It was like I harbored a closely-guarded secret that most people seemed to be aware of anyway.  It was extremely foreign, exhausting, fatiguing.  It was also incredibly stressful.  I would be relieved to have reached the end of a day, having made it through semi-successfully, only for a feeling of dread to immediately sink in, as I remembered that I had to get up, go back, and do it all again the next day.

This especially affects females because we are expected and trained to be more social than males.  Typically, a female advances through social development much earlier than males usually do.  That seems to be another reason that our true spectrum nature gets missed; we might learn to mimic other people (or even undergo some genuine social development) before the challenges related to Asperger’s/autism become more obvious (those difficulties often manifest as we begin school and have to interact with many other kids in a much more social setting, whereas they might not be so obvious at home, where there are fewer people and the environment is calmer and more familiar).

I find it interesting that in my experience, this ability to “adapt”, “mask”, and/or “act” has almost plotted a “bell-curve”, in a sense.  As I developed in childhood, I learned to mask, act, and mimic.  One would think that as one ages further, these skills would undergo similar advancement and development, expanding and becoming easier.  What I’ve experienced, though, as I age, is the opposite: my social adaptations are almost undergoing a regression of sorts.  It’s almost as if I’m gradually losing the ability to mask, act, and mimic.

I have a couple of different possible theories that may (or may not) explain this phenomenon.  One is that I might be feeling more comfortable in my own skin, with who I am as an adult, and may not see as much of a “need” to “impress” (or try as hard to interact with) other people.

Another is that I might simply be getting tired, exhausted, fatigued, or even cynical or jaded.  As if to say, “the world sucks anyway, so why bother?”  Or, alternatively, “I’ve been doing this for so long and I’ve decided I’m tired of it; it’s not worth it.”  Or perhaps the natural aging process catches up with us, and our “reserves” or “resilience” begins to wane, and our fuse becomes slightly shorter, our thresholds slightly less forgiving, our systems slightly less tolerant.

At this point, I’m not sure what the answer is.  Ultimately, the answer could boil down to a combination of the above, or maybe even another explanation I haven’t thought of yet.

Again, I’m immensely pleased that the current version of the diagnostic criteria includes the phrase “or may be masked by learned strategies in later life”.  Although I have zero data/statistics on whether or not this has made it easier for adults to obtain an official diagnosis, it does increase the potential by establishing the possibility.

It is this phrase, interestingly enough, that the specific note in the official autism criteria pertaining to the “masking/learning strategies in later life” gave me sort of an “a-ha!” lightbulb moment, serving as sort of a “clincher” for me, something that nudged me in the ribs and said, “take note, girl, they’re talking to you.”

Now, all we need to do is clue the healthcare providers in and encourage them to ditch their previously-held conceptions and catch up already. 🙂