In a recent post, I explored the (current) “fact” that an Asperger’s/autism spectrum diagnosis is subject to change–which may ultimately result in revocation. (It’s the truth, at least where I am, which is the United States; I think the same may hold true for the United Kingdom as well, based on some of the (awesome) comments people have shared with me).
I’m going to get purely theoretical for a moment…
What if that “pesky Part D” (of the US CDC’s official diagnostic criteria that I referred to in the recent post linked to above) were to be removed?
Lemme back up for a second. I’d like to bring everyone up to speed, especially if this is unfamiliar territory. What’s this “Part D” anyway?
Well, the United States (and several other countries) diagnose Autism Spectrum “Disorder” based on the Diagnostics and Statistics Manual for Mental Disorders, version 5, or DSM-V/DSM-5 (link to American Psychiatric Association’s website, DSM-5 page). This manual lists all (of what are conventionally considered to be) mental disorders as currently agreed upon by official authorities (i.e., the American Psychiatric Association), as well as their matching diagnostic codes. Under each heading in the listing, the specific criteria are spelled out; these are required to be met in order to qualify for the diagnosis.
Under the “Autism Spectrum Disorder” heading, five major criteria are listed; some of those have sub-criteria that must be met (in some cases, only a certain portion of them must be met, as opposed to all of them). The major criteria are given letters A through E, and the sub-criteria are given numbers, nestled underneath the applicable capital letter.
If you’re still awake, congratulations 🙂
Criteria A, B, and C are as follows:
A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):
- Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
- Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
- Deficits in developing, maintaining, and understand relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
(Gotta meet all three of these.)
B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):
- Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
- Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).
- Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
- Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).
(Gotta meet at least two out of the four.)
C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).
(That’s a given.)
E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
OK…so far, so good! But does this automatically make one Aspie/autistic?
YES, according to me.
NO, according to the authorities. You can meet every single one of these criteria and not “qualify” for an official diagnosis.
That’s because I skipped Part D, saving it for…well, now.
D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
As I mentioned in that recent post (I’ll link to it again here), it is absolutely possible for a licensed diagnostician to believe that although you may indeed have the impairments listed in Parts A through C, and to rule out all conditions mentioned in Part E and still deny you a diagnosis. In fact, although I don’t have any statistics, having interacted extensively with my fellow “Aspie/autie tribe” on social media, I would venture to say that this happens a lot.
In fact, even if you satisfied Part D in the past, it’s possible to “un-satisfy” it now or in the future, especially if you…
- have too-successfully built/adapted your life around your neurotype, to the point where you don’t appear “impaired/disabled enough” (according to an outside observer, no matter how much energy, time, or money these adaptations may–or already have–cost you)
- have become too good of a masker and/or actor/actress, being able to mimic others or hide your true personality or build your own personas that work “too well” for you, such that–again–you don’t appear “impaired/disabled enough” (again, to an outside observer, and again, no matter how much energy, time, or even your integrity or your soul this has cost you)
- have undergone therapy/counseling (of whatever type), being able to handle the challenges in your life more easily or with more confidence (etc), such that (say it with me now) you don’t appear “impaired/disabled enough” to that outside observer
But do any of the above suddenly make us “less” Aspergian/autistic?
What is NOT taken into account is just how much of that time, energy, or even money it might cost us to “look” “normal”. It can be tiring to keep up the charade; I know that it is for me. It’s exhausting, and I’m usually fairly energetic. It can take time–time observing, time practicing, time to try personas on for size; I’ve done that, too. And in some situations, it can take money. I may not actually care about what clothing is “in style” or what movies or electronic gadgets are getting rave reviews, but in order to feel “normal”, I might have to go shopping and drop some chunks of change. And for what? Do I feel better about myself when I do that? Short-term, for the moment, I think so. But long-term, eventually, probably not.
Also completely ignored is how much we might feel like we’re selling ourselves out as we hide and stuff various aspects of our personalities down, out of sight, out of the way. When we do this, we may feel like we’re losing our integrity and our identity–but we survive our encounters with the outside world, at least for the day. We give the appearance of being able to “function” “like everybody else”. That costs; those costs aren’t as easily calculated, but they’re there.
As an excellent commenter (who writes this amazing blog!) pointed out, the medical/psychiatric elite act as gatekeepers that hinge our diagnosis on a “house of cards” (I love her choices of words!). A diagnosis is actually very subjective, based on the knowledge base, attitudes, mindset, and potential bias(es) of the provider.
So, revisit the original question from the beginning of the post: What if the Part D component were altogether removed from the diagnostic criteria?
There are pros and cons to that, of course. Some of you may be nodding and mentally (or vocally cheering), while others might think I should pound sand or go play in traffic.
On the “pro” side, there wouldn’t be any requirement for our cognitive “quirkiness” to cause “impairment”. We wouldn’t have to possess “deficits” just to be (and remain) “official”. Our diagnosis couldn’t get taken away from us. We wouldn’t have to live in fear of that. We wouldn’t be penalized for adapting well, or successfully constructing a life that is conducive to our neurotype. When meeting with healthcare providers or authorities of an entity, we wouldn’t have to feel like we’re (potentially) “overstating” or “over-emphasizing” our impairments, or beating a dead horse that’s in the past, out of fear that we might get stripped of our diagnosis if we don’t “look” “disabled enough” to satisfy someone else’s arbitrary threshold.
(After all, it’s as if we, the people on the spectrum, are born as freshwater fish, and we’re expected to “function” in a world where the environmental “water” is of varying salinity. The fact that we’re freshwater fish doesn’t change. If we’ve been able to create a freshwater-enough environment, we can survive and “function” just fine; as that environment turns saltier, however, we begin to take a nosedive. The saltier that environment gets, the sharper that nosedive. We may even have “freshwater days” and “saltwater days”. What if we’re being evaluated on a “freshwater day”, in which we “look” more “normal”? That’s the kind of day the diagnosis might get reversed. That’s like saying that the freshwater fish isn’t a freshwater fish anymore; it doesn’t seem to matter that it might take a lot of extra energy or nutrients to function in that high-salt environment. The diagnostic authorities don’t take that into consideration.)
Another benefit to removing Part D would be that it’s a step in the right direction to de-pathologizing the Asperger’s/autism spectrum altogether, and treating it like the neurological variant/orientation that it is, rather than a “disease” or “disorder” that needs “treatment”. It would be like saying, “OK, cool–you satisfy Parts A, B, C, and E; that’s your neurotype and that’s good enough”, as opposed to also insisting that it make your life hell.
This would certainly remove a depressing requirement that only reinforces negativity and negative “self-think”, thus promoting neurodiversity.
So what’s not to love? Why don’t we just do it right now? Well, there is indeed a potential “con” side of removing Part D. Because this would remove the reference to (and requirement for) the “symptoms” to have a negative impact on one’s life (i.e., the “disability” part), it might indeed no longer be seen as a disability. Our society is under the unspoken impression that if a condition is not considered a disability, it doesn’t need support. If there’s no negative impact, then there’s no problem, and thus, why fund or help with any support?
In my answer to those people (those who would deny us supports because of our different ability), I would resurrect the “freshwater fish, saltwater environment” once again. If I’m a freshwater fish in a saltwater environment, and I live “too long” or “look too OK” in a saltwater environment, then I’m considered “fine”, with no disability. Never mind that I was privileged enough to have the extra energy/nutrients to spare, the extra nutrients/energy that I must spend on compensating for–and functioning decently within–my incompatible surroundings. They’re not looking at that; many times, neither am I; I’m prone to forgetting about it, too. Not because it’s not a big deal, but because I’m just that used to it.
But I think that freshwater fish, in a saltwater environment, should indeed be offered support. There’s nothing wrong with the fish, but they’re still out of their element, and it’s not fair that they should have to spend ONLY their own resources or make ALL the effort needed to interact/function in the saltwater world. After all, the saltwater world benefits from the freshwater fish’s membership and contributions; freshwater fish have plenty to offer, and they diversify the ecosystem, and isn’t variety the spice of life and all that?
So it’s not fair to simply say, “freshwater fish, the world is salty. Deal with it. It’s up to you; sink or swim.” Yet, that’s what happens every day. Qualifying Asperger’s/autism as a type of disability does indeed give us a small element of support (depending on the location and its local legislation). Including the autism spectrum on the list of disabilities at least unlocks the possibility–a chance–of getting help or support.
So….it’s a conundrum.
I want to have my cake and eat it, too. I’d like to remove Part D, the impairment requirement from the diagnostic criteria, because these are typically limited to that which can be seen/measured/agreed with by an outside observer, the vast majority of whom are allistic/neurotypical. I would also like to see the word “disability” removed from the Asperger’s/autism spectrum BUT instead be included under a new consideration: different ability. I don’t care if you love or hate the term, and if it doesn’t apply to you, I respect that. (It does apply to–and accurately describe–how a lot of us feel and function, so it’s not entirely fair to us to make us choose between the black-and-white disabled-or-not-disabled statuses, with no in-between.) For this differently-abled category, I would love to see supports at no/reduced cost provided, much like is done for disabilities in many areas.
I think that just because one has learned to act/mask/adapt well enough in their salty surroundings that they don’t feel/project any visible/noticeable impairment, that doesn’t mean that their neurotype is any less Aspie/autistic/neurodivergent.
If you’ve been able to make those traits work for you and you’re satisfied with them and your life in general, Part D becomes irrelevant; why deny you a Dx/title/label of something that you otherwise are? This only reinforces the negative disability aspect, making us (or at least amplifying the tendency to) put too much of our focus (and identity) on the hardship aspect, which promotes and encourages our own imprisonment. Although we might blame the rest of the world at large for that, we’ve actually (in that scenario) become prisoners of ourselves.
But that’s entirely my opinion, and it’s based entirely on my situation and some of the others I’ve observed through my own lens (which is far from perfect).
I have the feeling these concepts and ideas will be growing and changing. 🙂