Once autistic / an Aspie, always autistic / an Aspie

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…

…until now.

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.

🙂

 

 

 

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26 Comments

  1. once some dx is on your medical file, even and especially if it’s a bullshit, incorrct diagnosis (for many autistic persons diagnosed with a female body, bipolar seems to be a common bullshit diagnosis), it will unfortunately stay there. at least in usa.
    so if you were officially dxed with asd here, you’ll be good – except for perhaps getting (depending on state) if you’ll get any support at all.

    asd being on dsm is such bullshit too. then again, homosexuality was in dsm until 1973 *cough*, shows how very accurate and “objective” it is.
    while times change, and being gay is no longer classified as a mental illness, on the same time they put 4 year old kids to sit 8 h a day on a desk and punish and drug them for fidgeting. kids are supposed to play, spend time outdoors, have actual kid time and not just sit and please adults. but market their lack of adult like coma concentration as adhd, and there’s a market for dx drugs (here, have some extra sugary cereals, soda and candy for breakfast) and diagnoses.
    asd isnt as interrsting for those prescription drug pushing doctors if we dont want drugs – but actual support, counceling etc

    Liked by 5 people

    1. Wholeheartedly agreed! Yep, it’s amazing what some people come up with. I’m in the USA too and I’m floored by the *lack* of objectivity, especially in the Psychology field. It’s getting (ever-so-slightly) better but not good enough and not soon enough.

      Yeah I sometimes wonder if there’s a pharmaceutical motive, too. If you’re not diagnosed with autism as a kid, then if you’re a teenager you must have ADHD and if you’re an adult, it must be depression, anxiety, OCD, or bipolar. Ugh. ❤️

      Liked by 2 people

      1. im actually pretty worried about how this year is going to go, laina. whatever happens, i want you to know i love you and i always will.

        they think i need to be treated for depression and stress. the whole concept of going back to these fools who destroyed my childhood and gutted my future– doubles or quadruples any depression or stress that might have. they do not ever listen. my (biological) family is just worthless. they might as well try to kill me, as they are actively interested in destroying everything i am. assholes. you are more my family than they are, and weve never even met. my friends in town are more family than they are, too. they (my so-called) arent even my family anymore. if they took a luxury cruise and never came back– actually, fine.

        several of us were abused (not sexually, but we lived under absolute *terror*) growing up. my so-worthless-she-should-literally-kill-herself pediatric psychiatrist (a position which shouldnt even exist) never caught on. we told her in detail what was happening at home. she believed charisma over truth. what was her iq, 25? how the hell did she ever get a doctorate (perhaps she slept with someone? no im sorry, i know how awful that sounds, but she was worse.)

        this isnt medicine, its industry. its just industry. they might ruin your life– hey no hard feelings, its just business after all.

        Liked by 2 people

    2. > asd isnt as interrsting for those prescription drug pushing doctors if we dont want drugs – but actual support, counceling etc

      i try to tell my family this, but they cant hear me. i try to tell them this is the reality– they only want to medicate (and the medication treats things that we dont have– they are misdiagnosed, and the medication will not work– i was on it as a kid and it did *nothing*! not the ritalin, not the “mood stablilizers”)

      if i could sue, i would sue. this is criminal incompetence, it does harm, its a racket, and it goes against the oath taken as doctors.

      and despite going through all that, my idiot family still believes in it. they insist i find someone this year– who only wants to try to drug me. what else are they going to do?

      we should be pushing the icd-10 and fighting the dsm– which is a medical monument to incompetence, and fraud. we should be drafting an alternative entry, too. one by the only people in the world that even begin to understand these things. we should put an end to this MALPRACTICE. its a crime against humanity. however, i dont think we should be hysterical. determined, unceasing, relentless, and persistent– but not hysterical. getting too excited over these crimes against maybe 1% of humanity or so isnt just pointless– theyre going to be waiting for it, with their stupid fucking notebooks “aha, i told you.” (get fucked.)

      Liked by 2 people

      1. Yep, it’s just pathologizing “behaviors”, everything that differs from expected, age and sex based neurotypical standards, and pushingb dangerous drugs to normalize said deviations. Oh, and gender nonconformity is also in that bloody dsm-v pile of junk.

        On the same time they still go with the “chemical imbalance” and other bs on the bullshit diagnoses. Mood stabilizers? You f’n kidding, doc? If I’m in a shitty mood, i go for a nice long run outdoors, play with cats, listen to music and books i like, avoid humans i don’t like, drink coffee and red wine and use a horse dose of melatonin to sleep. There, natural things that make me feel good, no se effects.
        And funny how neurotypicals are so slaves to their emotions and feelings, but they don’t need their chemical imbalances drugged out.

        I’d be all for selective editing of chemicals but I don’t think docs cab give an exact list of chemical elements that are suposedly out of balance on someone.
        I’d reduce female hormones, and increase testosterone for my own needs. But somehow persons with femaleness are suppsed to suffer from female hormones until at least their 50s… 🙄 as if especially progesterone didn’t cause a lot of things such as pms

        Liked by 3 people

        1. “And funny how neurotypicals are so slaves to their emotions and feelings, but they don’t need their chemical imbalances drugged out.”

          youre wrong though– everybody “needs” their “imbalances” drugged, we are just particularly ripe for picking because (in the real-est of realities) truly no one understands us anyway, so theres no baseline to quibble about and anything can be explained away as weirdness. “no, theyre still weird, lets try some more of what never works anyway.” their crime will continue until we are represented (most likely by a very large, organized and persistent group of ourselves) properly, and accurately. and as someone who used to live in one of our gay capitals, can we please follow the gay pride movement, and not be totally isolationist and self-defeating like half the trans activists out there? (im subscribed to a lot of lovely trans people, but gays are far better at representing themselves and their rights, theres simply no question about it.) neuro-typical is fine with me, but we are neuro-*fabulous*.

          Liked by 2 people

          1. i like neuro-fabulous, i’ll steal that 🌈

            having a large crowd with people that are openly autistic, awesome like temple grandin will be good. more edication from inside of aspie minds to the neuroboring world will be good – maybe we can slowly open their eyes and minds on more truthful communication (i want to punch people when i hear “mindfulness”). say what you mean, mean what you say, don’t leave crap to be read only from “how” you said or used your facial expressions while saying it. sheesh, it really should not be that difficult… but apparently is. so what if … some aspie will write a good communication guide to the neuroborings?

            Liked by 3 people

          2. please do steal any/all of it.

            my favorite person on earth is “neuroboring,” well she isnt boring at all. shes weird like us, only not like us. if i had to compare her to someone in fiction, i would compare her to luna lovegood. my second favorite person on earth runs this blog. i dont know a single aspie on earth that i like more. i will call her my sister for as many years as i can get away with doing so.

            we dont have to assimilate, and we can communicate through ambassadors (we certainly need more than a couple celebrities to do so. this isnt “autism speaks through jean-luc picard” darn him, how can he NOT know better? leader of the bloody x-men, and hes taking the other side in real life..)

            i love temple, though (unlike most of the people in this community) shes pretty alien to me. i mean i 100% respect that shes one of us, but shes in another part of the spectrum as far as i can tell. i read half of the bio she wrote. i can relate a lot more to you guys, and id rather be represented by you guys. i suspect we need temple, too– to represent those more like her.

            Liked by 2 people

          3. i like temple’s books and speeches, she’s very engineer like and a speaker that i find easy to listen to.
            but yea, the more and the more different kind of autistic and other nd people we can get to be open and active and not hide any more, the better. especially when it’ll also include some super feminine ladies and girls that have girly interests and are good in masking – so hopefully it won’t be any more weird or worth hiding than being left handed (that too had such oppressed history)

            Liked by 3 people

          4. left handedness is a terrific example. im personally fond (like you) of pointing out how recently homosexuality was in the dsm– when will these people be exposed for what they are?

            im actually somewhat center of left– this is no time imo for bleeding hearts and banning half of twitter if people dont answer our demands to use the list of 100 new pronouns we just invented.

            that said, im passionately for all civil rights– gender, race, economic, intellectual, cultural–

            but ive got more of a libertarian/free speech/freedom of thought angle than the left.

            forcing people to accept everyones differences through compliance doesnt seem rational or sane to me. demanding the right to be your true self though? im with that. if you need to understand my motives and politics, call me a gay libertarian. im not gay (more bi or pan) and not libertarian, but theyre simple and easy to understand, and sort of close enough for political work. super-feminine is cool with me– i like tomboys best. my favorite person looks and dresses like a model– underneath that (not that ive ever been given a peek) theres literally a circus performer that can have two guys standing on her shoulders… i thought about proposing.

            Liked by 2 people

          5. my wife was bi. we were monogamous (at least until the marriage fell apart) but half the women ive dated were bi or curious (probably increasingly representitive of society anyway) and i would be lying if i said it wasnt nice to be able to check out women together.

            trans women either like me (as i sincerely like them) or hate me (as some have at least more than no reason to be paranoid based on their pasts, and use slurs like “chaser”) but the last time i was talking to a girl that was trans, i was definitely hot for her. she thought i wanted an “online relationship” (no, just trying to get to know you. maybe at some point, somehow, we could actually meet if you wanted) she wasnt too, too far. for a moment it almost seemed to be going well. (she said that was “marriage material” for one of the impressions i did.) well that didnt last more than a few conversations.

            nts are soooo fickle sometimes. we can be fickle, in our own way. (being opinionated helps.) anyway, after getting dumped by a pre-menopausal live-in soulmate who was finding herself (or just hating me) i thought i better “try guys” (i already did in college… he was boring) but a good straight friend of mine did catch me checking out the tight shorts of one of his male customers, so i must be legit. i mean i was staring– i was going to help him take them off, but i was *trying* to be professional. i mustve gotten away with something too, because i caught the guy “adjusting himself” while i was looking– yay for me! that said, im a recovered female supremacist– i used to think you lot were better in every way ❤ im past all that. (and no, i dont think we men are better either. fool me once, shame on… shame on you. fool me– you cant get fooled again.)

            Liked by 2 people

  2. Reblogged this on Aspie Under Your Radar and commented:
    This is such a phenomenal post. Extremely well-reasoned, and hits so many salient points. Indeed, turning over definition of Autism/Aspergers to neurotypical folks is like asking someone to navigate a ship at night without a spyglass or sextant. They just have no clue.

    In some cases, it’s like we’re walking around with our own personal Hubble-class telescopic perception, being told by people who are relying on their own eyesight, that dwarf planets can’t possibly exist, and there IS no other star system, except our own. They can’t see it – so it must not be there!

    But of course.

    Except it is.

    Our world is there. Our world is here. Just because they can’t detect it, doesn’t mean it has no reality or consequence.

    I detest mob rule. I really do.

    Liked by 2 people

    1. ^^Bravo!! Spectacular point(s)!! I’m enamored with you telescope reference! Perfect! 👏🏼👏🏼

      Thank you so much for reblogging 😊❤️💓

      Liked by 2 people

      1. Uh… ’cause we’re not…? I suspect at times, NT thought process is not nuanced enough for us, and that’s why we take them literally. Because they act literally. Maybe?

        Liked by 2 people

        1. i dont know. they make details into a dichotomy– if you pay attention to details than of course you will *never* do the big picture (bs, we just do more details) and we can walk through steps of things they wont always bother to. its natural. so they look at that and say “youve got a great imagination.” yeah, sort of like the “imagination” where if i step off this cliff im going to fall off, not walk on air like wile e. coyote. “but you dont know that…” oh yeah i do…

          sure, you can still be wrong about a prediction/assumption/line of reasoning, but our processes arent that different than theirs– theyre just more detailed. sometimes its a distraction. and sometimes its exactly what the line of reasoning needs. dont wait up, they wont be able (or be willing?) to tell.

          Liked by 2 people

        2. of course thats where trust and objectivity come in. a reasonable nt will notice that we get things right surprisingly often. they give us credit where due.

          so any nt is really capable of noticing and admitting that we arent just wildly imaginative. its when someone is willing to presume we are that they have so much to work with: “well i cant possibly fathom how you arrived at that conclusion.” yeah well… try. but you know steve is already nodding, because he gets it. he knows me. good old steve. a f***ing love ya, steve.

          Liked by 2 people

  3. a proposal for an “npride” flag for neurodiversity:

    i would encourage people to adapt it as they think is best.

    they will need to recreate it if they dont like the license– its based on this image: https://en.wikipedia.org/wiki/File:Electromagnetic-Spectrum.svg and the license is creative commons attribution-share alike 3.0 unported, which i did not choose: https://creativecommons.org/licenses/by-sa/3.0/deed.en (it allows commercial and non-commercial reuse.)

    Liked by 1 person

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