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 🙂
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(Image Credit: Sylar113)
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the silent wave 
So if you are masking as a nt …. you are anynore on the spectrum. Do I understand? So you have to mask and make your life a fiction instead of being yourself? As for me being themselves is the only real meaning of our life!!!
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I agree! I’ve definitely become more true to myself, largely being able to build a life that is compatible with being on the spectrum (I’m self-employed, married to an unconventional partner, we have no kids, we have a set routine, our house is comfortable and “low-key”, etc) 🙂 When I go out and about, I have to act a little like something I’m not; normally, I don’t talk to people I don’t know, but if I’m grocery shopping, I feel I have to talk to the person at the checkout. Or when I go to work, I have to meet with clientele. Normally, I wouldn’t want to be that social. But I don’t want them to think that I’m not a nice person, so I have to act more outgoing/extroverted than I actually am. It does take a lot of energy. In a way, it is sort of a fiction; in another way, it’s just a variation of my true self. But it’s not the “default” way for me. 🙂 ❤
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You are nice person!!! I like you to say a varation of your true self !
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Ok. This is an artefact of the “diagnostic” system in general. Step back from thinking about autism a minute. The DSM & ICD systems are, by definition, a classification of “disorders” – it’s what they were designed for. So the requirement for “clinically significant impairment” is intended as a failsafe to stop differences being classed as “disorders” when they are not causing any problems. One of the criticisms of DSM 5 is that it includes and therefore “pathologises” too many variants of normal behaviour, eg Disruptive Mood Dysregulation Disorder (temper tantrums!). Thing is, there is no alternative to these systems for identifying a valid neurotypical difference, so using it either has the implication of implying autism is a “disorder”, or diagnosticians have to understand this difference and be flexible. Like I’ve said before, I have told people that I think they ARE autistic even though they do not meet strict criteria (usually folk don’t come to the attention of NHS diagnosticians if no related distress or “impairment”, but usually because no clear evidence of early manifestation – could be because parent unavailable or v protective early environment).
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Agreed, very much. 🙂 When the DSM-IV and -V came out, I was pretty amazed at how many normal variant behaviors were included. It seemed like overkill to me. I definitely like the idea of coming up with an alternative system, one that’s not so pathologizing. It’d be pretty cool to take a neurotype/neurological orientation approach. Kind of like sexual and romantic orientations. One can be varying degrees of same-sex-oriented, opposite-sex-oriented, bisexual, asexual, or at any point in between, etc. One can be cis-gender, trans-gender, agender, or again, anywhere in between. And one can be hetero-romantic, homo-romantic, bi-romantic, or aromantic (and again, any degree thereof/between). And anyone can be any combo 🙂 It’d be kinda cool to do that with the Asperger’s/autism spectrum (male and female phenotypes) and neurotypicality; we could take an approach much like the Myers-Briggs personality assessment, where everyone is different, that’s OK, there’s no “right” type to be, but there are strengths and weaknesses of each, and extensive detailed profiles could be written on each, in a non-biased manner that can help people learn about themselves and each other, and make their lives easier, no matter where on (or off) the spectrum they may be 🙂 Thank you so much for your insight! ❤
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The person who did my diagnosis here in UK (I chose to pay privately) warned me that I was so good at masking and apparently coping with daily life that the UK official machinery (via NHS) would be unwilling to send me for diagnosis or may try to un-diagnose me. I have spent my whole adult life so 25 years adapting and narrowing my life down to the parts I can handle. I am employed but only through creating self-employment I can do at home on my own terms. I can function ‘normally’ in public ( at great cost to my physical & emotional health in private). My spouse believes (and believed also pre-diagnosis) that I am not cut out for work because it causes me incredible stress. But I don’t know if I should or even could claim any kind of disability…
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Wow. I’m glad you went the private route. It seems like that’s the preferable way to go; the professionals seem more amenable, usually. I’m also happy for you that you have been able to create a job for yourself! Like you, I’m self-employed. It’s not easy, is it?? Wow. Talk about a whole different kind of ball of stress at times lol 🙂 I’m really hoping your spouse is supportive. I’m glad they at least understand your situation. ❤ It might be advantageous to try for disability at some point, just to know that the option is there should you need it. I might find myself in a similar boat at some point, too; I'm going to try and work (always self-employed) for as long as I can, because at least I know that I can "make the rules" and control my environment/accommodate my needs, to a large extent before make a run for disability. But then, I'm in the US, where there isn't much by way of benefits for autistic adults, so I might be barking up a nonexistent tree altogether. 🙂 Good luck with everything, and thank you for your insight! ❤
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This is actually why diagnosis is bullshit. You can diagnose a broken bone (it is or it isn’t) and you can fix it (because it’s actually broken). You can’t diagnose a condition for which the treatment is (wait for it) fixing society. If society changes, or you change your OWN society, you’re magically no longer Disabled. This means that if you’re PERMANENTLY Disabled (Blind, Deaf, etc., included) and there is no cure, then the doctors are not really serving any purpose after that. They cannot judge how you get along with society, which is what actually Disables you. This is an important blog post because it points out the reasons many people get the diagnosis at all are kind of hinged on a house of cards that’s created by the medical elite, rather than a social one, created by society. When we’re not impaired by our difference, we’re magically not broken. That’s because they can’t sell their snake oil treatments (maybe I should say bleach ’cause that’s a thing). In the end, the incentivize us to overstate our problems (if we’ve done well at creating an environment in which our Disability no longer exists; ie. a comfortable home life with people and animals who don’t Disable us, and/or a school experience where our Disability is part of the norm. They would likely argue that this is a good thing: that we can make our Disability disappear if we do a good job of managing our lives, but the problem is until the ENTIRE society changes, we will still be limited. There will be jobs we can’t do, places we can’t go, and that’s not really progress. But it hides us out of plain sight. These were also the people who liked institutionalization for people. All this is one rich tapestry. Anyway, I am glad you got your diagnosis since you felt it necessary. This blog points out why it’s not the panacea that so many think it to be and the social model of diagnosis is the only useful one, long-term.
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Thank you for writing this! I completely agree, on all points. In a way, our disability is indeed fluid (at least, that’s how I experience it; others’ viewpoints may vary, and I totally respect all of them); I especially admire the part about “incentivize us to overstate our problems” in order to maintain our status, and it’s also very true that in order to make our lives more comfortable and livable, there will ALWAYS be things we can’t do (or can’t do as easily, without lots of energy and/or sacrifice). And who knows what those intangible consequences are (when we mask/act for prolonged periods of time)? I know that it did take its toll on me, both mentally and physically. I do know that I’m beginning to fatigue in terms of keeping up the charade for the benefit of others (but also to avoid undesirable reactions/responses to me, since I tend to care a bit too much about what other people think – which in my line of work, is still an important consideration, but still…) I think that I did feel that my diagnosis was necessary; it brought me solidity and “closure” (whatever that may mean – for me, it means peace and certainty, as my findings and suspicions have been corroborated by a licensed professional). I do like the vibe of the term Social Diagnosis, and I would love to hear more! Do you have a blog post on the subject? 🙂 Thank you again ❤
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Reblogged this on Autism Candles.
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