Is it possible to meet the official diagnostic criteria for Autism Spectrum “Disorder” one year…but not the next?
FunFact: Apparently, the answer is yes, according to my psychologist. That’s not his personal opinion; apparently, that’s actually the way it is.
That really surprised me (Biggest Understatement of the Year). I mean, everybody knows that we’re born this way. Everybody knows that Autism Doesn’t End At 5. Everybody knows that there’s no “cure”. Not even appropriate “treatment”. (Even if we did have a desire for any of that; which, of course, I personally don’t.)
My psychologist did explain further, and as he did so, although he refrained from expressing his personal opinion, I got the impression that even though he was successful in being objective, he didn’t exactly agree with that fact. (At least, it’s a fact at this time; maybe the authorities who make the (official) “rules” might come to their senses someday. In truth, it’s more of an arbitrary “rule” than it is a true fact, per se.)
He explained that it’s not as simple as meeting the criteria and boom–you’re on the spectrum for life. He said in reality, it’s (conventionally) considered much more fluid than that. He said that it is indeed possible to meet the official criteria one day, and then, some time later, not meet those criteria anymore.
How can this be? What gives?
Well, it has to do with that pesky Part D of the US CDC’s official diagnostic criteria for the Autism Spectrum, which reads: “Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.”
Essentially, in order to meet the criteria, merely demonstrating the “Triad of Impairments” (Part A) and the rest of the traits from Parts B and C isn’t enough. These specific traits must have some kind of negative impact on your life, preferably in multiple areas. If you have structured your life around your neurotype well enough that you’re no longer feeling that detrimental impact, poof!–you’re (theoretically) not considered to be on the spectrum “anymore”. Essentially, you get penalized (in a way, by being denied other supports that you may need in the future) because you were “too successful” at adapting your life to your neurotype, at least until/unless you can get diagnosed again in the future. (And given how tough it can be to obtain a diagnosis in many areas of the world in the first place, the very thought of going through the process a second time is enough to make one’s head hurt.)
This also begs the question about the fate of those who can act and mask exceptionally well–for now. The same concept applies; the better actors and maskers are basically penalized (again, by having a diagnosis denied or revoked) for being able to act or mask “too well”.
The problem is, the authorities who write these requirements have no clue how much energy it takes to mask and act. Hell, many of us maskers and actors are often completely unaware that we’re doing it, and we, too, may not realize just how much energy it takes or how much damage is done in the process as we chisel away and deny/bury bits and pieces of ourselves.
How often does this actually happen? What are the real chances of getting a diagnosis reversed on you?
Honestly, I’m not sure. I’ve never heard of it happening, but I’ve been exposed (and a member of) the spectrum community for all of five minutes in the grand scheme of things, so I’m probably not the most reliable source of statistics. All I know is that the possibility is there, and it’s real.
(A quick sidenote to the parents of autistic children who see autism as a bad thing: please–don’t you DARE get any ideas about forcing your child into “treatment” in an attempt to “train” them to conform, act, and mask until they no longer (appear to) meet the diagnostic criteria for autism, foolishly believing that doing so will “cure” them and that they “won’t be autistic anymore”.
The autism spectrum is a neurological orientation, much like one’s sexual orientation, and as such, we are born the way we are and we do indeed remain that way for life. That’s not to say that neurology can’t change in terms of the strength or weakness of neurological pathways, but the “hardware” and “firmware” are set (pretty much in stone) during development and any changes in function are purely due to a concept known as neuroplasticity, which is the usage and reinforcement (or disuse and atrophy) of various neurological pathways/functions. If your child is autistic, they will always be as such. So please–forget about any unrealistic or delusional funny business. That’s not any kind of recovery; in fact, it would be nothing short of abuse.)
Do I agree with this whole thing? Oh hell no, but that’s the subject of
a near-future another post 🙂