A while back, I wrote a fire hose of posts about Asperger’s/Autism Spectrum diagnosis. In those posts, I took people desiring natural sedation on a rather unscenic journey through the nuts and bolts of the official diagnostic criteria, and I think I even explained how they pertained to me (for those of you in need of a guilt-free crutch to help you fall asleep tonight, here’s a link to the mini-series). I probably stripped those nuts and bolts down beyond any usefulness, but I did leave one thread dangling…
An offshoot post in the series (titled “File Under: Say What?? Autism Spectrum is considered a ‘fluid and variable’ diagnosis”) cautioned the Asperger’s/autism spectrum community that a person with a diagnosis of Asperger’s/autism can indeed be stripped of that diagnosis. For some people on the Asperger’s/autism spectrum, this is welcome news (my heart aches for the genuinely good person who authored this post; Content Warning for those who find themselves depressed about being autistic, or who would take offense that the idea that someone would be). For others on the spectrum, it may leave them hanging in a what I can only guess is an uncomfortable, hopeless limbo.
And indeed, several friends of mine have had their diagnoses stripped; here is one author’s heart-breaking post about the event, and the same author’s eloquent open letter to their psychologist in an attempt to plead their case. So yes, a person can lose their autism spectrum diagnosis.
Because for some reason, it’s “fluid and variable”, according to my own psychologist’s semi-grim words. (He’s a nice guy and a highly competent professional who didn’t exactly agree with this idea, either).
The post ended with the cliffhanger question: do I agree with this idea?
My answer was–and still is–an emphatic “oh hell no”. And then I trailed off with the hint of a future post on that subject…
…which had not yet been written…
I vehemently disagree with the idea of an Asperger’s/autism spectrum diagnosis being able to be yanked away. (That’s not to leave hanging those who want or would need that to happen in order to fulfill their life’s dreams, however; to my lovelies for whom this is the case, please let me offer you an ounce of consolation: I promise that I’ve hollered before–and will keep hollering–in support of a movement to shift the perception of the Asperger’s/autism spectrum toward a fact that it’s a neurological orientation in need of individualized support at times, as opposed to–and away from–the current (mis-)perception of our status as a pathology that needs to be treated, cured, and prevented at any (hefty) cost).
We collectively understand that Asperger’s/autism has a genetic component, and is a lifelong neurodevelopmental variant. “Neurodevelopmental”, for the cheap seats, means that it most likely occurs as a result of epigenetics, or the interplay between one’s genetic code and the in utero environment.
We also know that at this time, one’s genes can’t be manipulated, and it will be a long time before this could be accomplished after birth on existing individuals. As it stands now, what’s done is done.
This means that one’s neurological orientation, once established (whenever it’s established), can’t be altered. Sure, new research is hinting at being able to change brain function during the course of life, even throughout adulthood (a concept known as neuroplasticity), but probably not enough to negate one’s Aspergian/autistic neurotype.
We also know that an official diagnosis isn’t necessarily required in order to secure a spot on the spectrum, if you’re not going to need the magic piece of paper to file a claim for services or accommodations in a formal setting. You know yourself better than anyone else can, and the overwhelming majority of the Asperger’s/autistic community is in touch with reality; i.e., they’ll accept your self-assessment on its face.
I’ve mentioned before that a neurological orientation is much like a sexual orientation. I’ll draw some parallels in Cliff’s Notes fashion:
- An orientation, neurological or sexual, is something we’re born with, and it remains as such throughout one’s entire life.
- It’s “different, not less”. Asperger’s/autism is not any more of a pathology, disorder, or set of willful deviant behaviors than being LGBT+ is. There is no one “right” way to Be.
- Rather than a disorder, I perceive both types of orientation as different ways of being, in ways that are not divisible from the “rest” of a person; instead, these characteristics are part of who they are, and one would not be the same person without them. These orientations are not something we “have”; they’re something we are.
- Neither is a condition that can be–or should be–treated, attempted to be cured, or prevented.
- Neither is inherently (in itself) a disability, but being in a stigmatized minority, we do face difficulties and challenges, which can lead to depression, loneliness, and many other effects.
- You know, from your earliest memories, that somehow, you’re different.
- The world in general is becoming more and more familiar with and accepting of either/any sexual/gender and neurological variance, but this is (too) slow in coming. I can’t wait until the day in which the stigma and fear are gone.
Thus, I can only imagine that for a person to be stripped of their diagnosis is would indeed be a tragically unsettling depantsing of their identity.
If such an alteration of one’s record is possible (which it is), then that means there’s something wrong. Very wrong.
Somebody screwed up.
Who screwed up?
Well, it depends on who you ask. Or which angle from which you approach the issue.
Personally, I think that for Asperger’s/autism as a neurodevelopmental variant to continue to be classified in a catalog of mental/psychiatric disorders, in 2017, is reprehensible. It’s not even accurate! (Don’t hate me yet, my pretties; I have an idea–I don’t think it’s an original one, but I can’t find the source right now–on how to solve the Depathologizing vs Disability/Support dilemma. If I had my way, nobody would get left out in the cold; everybody would win. Yes, everybody.)
So to include Asperger’s/autism in a mental disorder index could be considered a screw-up. When the Diagnostics & Statistics Manual for Mental Disorders (DSM) was first developed, the scientific progress wasn’t there. The neurodevelopmental aspect hadn’t yet been identified, traced, and outlined, and thus, the experts of the time could only go by what they thought they saw, which was a set of inexplicable behaviors.
But we know better now.
That doesn’t have anything to do with anybody screwing up, resulting in someone being stripped of such a diagnosis, other than just like being LGBT+-oriented, it shouldn’t even be a diagnosis in the first place. But that’s neither here nor there. I guess I got stuck for a minute on counting the ways in which the whole autism diagnostic scenario is screwed up. (Three cheers for focusing on details instead of the big picture!) 🙂
The next opportunity for someone to screw up might involve the accuracy of the criteria itself/themselves. The criteria aren’t perfect. They’re written by humans, and almost-assuredly non-autistic ones at that. It’s not like autistic people were ever consulted during the authorship of these criteria. It’s not like the professionals came and asked us, “hey, what’s it like being autistic/an Aspie, so I can listen to your answer, take it seriously, and go ahead and write it down for this new diagnostic index we’re writing?”
Yeah….no. That didn’t happen. The ego factor of the people in charge wouldn’t have heard of it. They wrote plenty about us, without us. And they still do it.
Since experience is the best teacher, and these authors/experts are wasting precious time and money trying to play guessing games with what they’re (third-party-)observing instead of going straight to the fountainhead source (us), they lack that valuable firsthand information. What results (the criteria we’re stuck with) are a poor replica, like someone trying to recreate a copy of something when they’ve never even seen the original and the only clues they have come from a couple of blurry photos.
Our experience could be their best teacher, and they continue to pass up the opportunity. Shameful.
So, the criteria themselves could be one of the screw-ups involved. Imperfect criteria translate to imperfect explanations or descriptions, and they may not accurately describe our particular neurotype.
Throughout the various DSM editions and revisions, the Autism Spectrum diagnosis has been dynamic and ever-changing. The once-scattered and bizarre descriptions were slowly gathered together and fine-tuned into a much more recognizable, contemporary picture.
But that doesn’t mean it’s a finished product yet. That doesn’t mean that all the loose ends are tied up neatly. That doesn’t mean there isn’t room for more improvement. There might be more to the story. In fact, I’m sure there is.
For now, who’s to say that the present criteria sufficiently detect everybody on the spectrum, while successfully siphoning out those who aren’t truly on the spectrum? We know that untold numbers of people have been missed, having gone undiagnosed and undetected, based on previous and current criteria, when they were actually Aspergian/autistic all along. Conversely, we also know that there have been people who were diagnosed as Asperger’s/autistic when they actually weren’t on the spectrum after all…
…which leads me to the next potential pitfall: the diagnostician and their awareness/familiarity with the various Asperger’s/autism spectrum traits in a variety of people of a wide age range.
Some diagnosticians are simply clueless. Autistic traits might be vividly expressed in the patient sitting in front of them, their autism neurotype staring the professional in the face, and that professional might be completely oblivious. Maybe that provider has a particular, possibly narrow or excessively-stereotypical prototype of Asperger’s/autism in mind, and they may lack the cognitive/mental flexibility to deviate from that.
Maybe their particular med school professor glossed over the autism spectrum fairly quickly one day, without going into any meaningful depth.
Or maybe that provider is very well aware of what autism “looks” like… in a different segment of the population (for example, six-year-old boy) than that of their patient (who might be a 26-year-old female).
It may not be the diagnostician’s fault (or that of their education), though; their informational resources often consist of the results/findings compiled from numerous scientific research papers….which might have been conducted almost exclusively on little boys, or perhaps males in early-to-middle adolescence.
Or worse…mice (link to Aspie Under Your Radar’s awesome semi-satirical post).
I imagine that in many cases of Asperger’s/autism diagnosis reversal, the original diagnostician was probably not involved. (In my experience in the healthcare field, most providers don’t particularly enjoy eating their previously-uttered words, and they’ll drag their feet at a snail’s pace when faced with the unavoidable duty to do so.)
So, the crosshairs swing over to what are likely to be other healthcare providers. Let’s suppose that up until this point, everyone involved did everything right–the diagnostic criteria were accurate enough to pick up on the autistic person, the professional was astute enough to connect that person to those criteria, and a diagnosis has successfully been rendered. If that person’s diagnosis is now being reversed, it’s probably going to be done by a different professional, and because we’re assuming that every link in the chain has been solid up until now, it’s safe to say that this second (or third, etc) professional is the one making the mistake.
Because although People Change, this change occurs in elements like hairstyles and music preferences. They might change hobbies or university majors. They might even change residences or careers.
They do not, however, change neurotypes.
Someone running an Asperger’s/Autistic Operating System, with all of its “hardware”, “hard-wiring”, “firmware”, and “software/apps”, will always run this way. Peoples’ depression can lift, their ADHD-linked focus can improve, and so on. One can even begin to think faster, remember more (and more accurately), ease their anxiety, dissipate their irritability/anger, and whatnot. People can make improvements within what they have.
But it doesn’t change what they have. One does not (cannot) simply change their neurotype altogether. An Apple/Mac computer does not spontaneously (or even gradually) convert to Windows. It’s built on an entirely different kernel and file structure, and entirely different code. People on the Asperger’s/autism spectrum don’t become any less Aspergian/autistically-wired than cisgender people become trans or gay people become straight. People don’t just let go of their Asperger’s/autistic neurotype like setting down a coffee cup.
It was always there, and it always will be, or it was never there, and it never will be.
Chances are that if someone has been diagnosed as–or has genuinely come to suspect they are–autistic/an Aspie once in their life, then they actually are. And those odds are much greater than those of having been labeled autistic/an Aspie when they actually weren’t (although that happens, too).
A related rumor is also prevalent among the community of parents of children on the Asperger’s/autism spectrum. Every so often, the urban legend of a “recovery from autism” will pop up.
Much to my *facepalm*.
Nope. I can’t buy that, for all of the neurological orientation-related reasons stated above. Either the child has simply begun to act more “normal”, or they were never on the Asperger’s/autism spectrum in the first place.
It’s OK to change a diagnosis (of any kind), if that diagnosis is revealed to be incorrect. In fact, that’s what should happen, if that’s the case. That only makes sense, both logically and ethically.
But… whether someone has an official diagnosis that they shouldn’t have, or they got missed for a diagnosis they should have, they’re still either an Asperger’s/autistic neurotype, or they’re not. A piece of paper or lack thereof doesn’t change that.
Each person is what they are, and no matter what that is, that’s OK.