The potential ‘Dark Side’ of Asperger’s / autism ‘self-diagnosis’

This is the second in what will probably be three posts in this series.  Whether or not there will be a third post depends on how gutsy I am to publish the third.

I apologize if this looks like I’m beating a dead horse.  If it looks like I am, it’s only because I had a hell of a work week and I’m only now catching up on putting the thought-buds that had been building up throughout the week into (hopefully coherent) sentences.  I promise that I’m not continuing to write about this in order to keep emotions fired up, conflicts alive, or trauma-reactions in perpetual motion.  I hope that everyone who either knows me on social media or has sifted through my blog thus far knows that that’s not my style.

I just have a lot to say.

So I guess I’ll get right down and say it.

During the past several days, there’s been a sometimes-heated discussion about self-diagnosis and whether or not it is–or should be–accepted among the Asperger’s/autistic community.

Those who are against the idea of self-diagnosis do make a fair point.  (Stay with me; keep reading.) 🙂

I know this may come across as social chameleonism akin to the behavior of a politician, but I admit, both sides made many excellent points during the Diagnosis Debates over the past few days.

Personally, I am open about my own self-diagnosis (in which yes, the term “diagnosis” could literally be a correct usage of the word in my case; I’m a doctor myself and there is no law or ethical code in my region that prohibits doctors from diagnosing themselves).

I also support the act of spectrum self-diagnosis or self-identification by other people, regardless of whether or not they are medical professionals.  I have no place not accepting those people as members of the spectrum, as I’m of the philosophy that we know ourselves better than anyone else could know us.

But this post isn’t about that.

In fact, if you’re reading this, and you’re self-diagnosed or self-identified as an Aspergian/autistic person, this post isn’t about you at all. 🙂

This post is about some of the “other” self-diagnosed Aspie/autistic people–the ones who claim and latch onto a label just because they took a single online quiz.  Or those who might’ve heard about a few pop-culture-popularized traits from a friend, family member, coworker, neighbor, or on Facebook or other social media, and cavalierly assumed that because they also have those one or two traits, that they must be on the spectrum, too. And from there on, they assume they are and shout it out from the rooftops.

Um…..no.  Just–no.

I have a few words for Those People.  (No, not profanity, although sometimes it’s tempting!)  No, those words include “imposter”, “pseudo-Aspie/autistic”, “faker”, and a few others.

They’re the ones who are doing it because they might want attention.  They might want to be different, to set themselves apart somehow, because they think their lives are boring.  They might want sympathy from those around them.  They may be solely after disability/out-of-work benefits eligibility.  They might be a drama-king/queen.  They might like to stir the pot.  They might have a general “poor me” vibe.  They might be megalomaniacs or narcissists.  They might want an excuse for other (non-spectrum) issues like indecision, lack of motivation, pure-blue laziness, lack of commitment, lack of maturity, antisociability, rudeness, etc.  And they think that they can get a “pass” if they say the “magic” words “Asperger’s” or “autistic” because hey–those are becoming more socially-acceptable, and no one would dare question them.  They might just succeed in getting that free pass they’re after.

They’re gaming the system.

That irks the Aspie/autism spectrum community.  It doesn’t matter whether we’re officially diagnosed or self-diagnosed/assessed; that behavior should irk all of us.

Regardless of whether you accept my (semi-unique situation of) self-diagnosis as “valid” or not, please understand and respect that the “imposters” irk me, too.

They can cause real damage.  This damage can happen to Aspergian/autistic people individually.  This can take the form of lies, betrayal, deception, illusions, delusions, manipulation, even collateral damage.  Damage can also be done to the entire Asperger’s/autism spectrum community.  People who have not taken the time to seriously consider and actually do some research (preferably of the official diagnostic criteria used in their region of residence) and genuinely, with an open and logical mind, do some hard and serious self-checking, self-analysis, and self-reflection, but go around and holler from the mountaintops that they’re on the spectrum……I have no words–nor defense–for that type of behavior.

And there is no defense for that type of behavior.  It’s just wrong.

I’m sure that the “pseudo-Aspies/autists” have a real, genuine issue of some kind.  They might genuinely feel different from other people.  They may be suffering from depression, anxiety, or any other common malady.

That doesn’t make them Aspie/autistic.

Rather, they may be bipolar instead.  They may be ADD or ADHD.  They may be Borderline Personality.  They may have dissociative personality issues.  They might have schizophrenia or some type of neurosis.  They may be sociopaths.  They may have a history of a particular physiological response to a mind-altering drug (recreational or prescribed).  They may be codependent.  The possibilities are many.

That doesn’t make them Aspie/autistic, either.

They may simply be needy.  They may be bored with who they are.  They may feel like they’re not “interesting” enough.  They may be ashamed of who they are.  They may feel broken.  They may yearn to belong somewhere, anywhere.

I’m not going to deny them any of that.  I’m not going to deny that something is indeed “up”.  But it doesn’t make them Aspie/autistic.

They might truly share some aspects of Asperger’s/autism; for example, they might be introverted.  Or they might have low tolerance for crowds.  Or sensory processing issues.  Or they may be blunt.  Or they may want to stay home most of the time.  Or they may consider themselves antisocial.

That still doesn’t make them Aspie/autistic people.

Personally, I’m fortunate enough not to have had any encounters with “pseudo-Aspie/autistic” people.  I personally haven’t been burned, betrayed, heartbroken, deceived, lied to, or otherwise hurt in any way.  Thus, I can’t personally relate much to the experiences described by some on the self-diagnosis-isn’t-valid segment of the spectrum community.  I don’t share their ire, (but only) because I personally haven’t witnessed that type of behavior.

But I’m not going to deny that exists.  I won’t claim that it hasn’t happened to other people, and/or that other people haven’t truly been hurt when it does happen.  Just because my experience thus far doesn’t include that kind of behavior doesn’t mean that it isn’t real.

And the very idea of someone engaging in that type of behavior does irk me.  I may not have much cognitive empathy, but I do have a fair amount of emotional empathy, and I have a decent imagination.  Taken together, that can add up to create a little “fire of ire” kindling inside me, too.

Being careless, cavalier, or casual about spectrum labels or conditions isn’t acceptable.

Throwing around terms without knowing what they mean isn’t acceptable.

Simply taking a single online quiz and knighting oneself as a member of the spectrum isn’t acceptable.  (It’s a great starting point for further research, but it should never be one’s endpoint.)

Using other people isn’t acceptable.  Neither is lying to, deceiving, or manipulating them.

Pretending to be something you know you’re not isn’t acceptable.

Using labels to “set yourself apart” to be “trendy”, “interesting”, or “cool” isn’t acceptable.

That being said, please… let’s unite–both “sides”, the officially-diagnosed AND the genuinely-researched self-diagnosed/self-identified–together, against the faking, bandwagon-hopping, trend-grabbing, deceiving, and manipulating, and call that behavior out for what it is.

If the person is truly hurting, fragile, and genuine-in-spirit-but-misguided, I urge the spectrum community to be gentle in steering them the other way and pointing them toward the more likely underlying culprit in their situation.

If they’re simply looking for drama, excuses, or something trendy or “special”, then let’s call them out on it, and harshly if need be.

The biggest mistake the spectrum community could make is to shun someone who has genuinely done real footwork, researching as thoroughly, credibly, and far-and-wide as possible, and realized–as accurately and objectively as can be ascertained after cautiously considering ALL of the variables and the lifelong timeline of events and traits–that they identify strongly as someone on the spectrum.  (Obviously I’m biased, as I fit that description. 🙂 )

The best thing we can do for our community is to focus on positivity, individual and equal rights, create a “safe space”, and assume that someone who self-identifies as an Aspie/autistic person actually is, taking them at their word unless/until they prove otherwise.  But that’s just my opinion.  I don’t claim to speak for the community at large, and (I hope) I never have.

***

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29 Comments

  1. I approve this message a hundred % as a shocked #actuallyautistic watching the neurodiversity movement eat their own. Making jokes about everything from OCD to narcissism (part of my complicated legit dx) doesn’t deserve actual hate from anyone against anyone without it turning back into the genocides we are trying to show NTs isn’t acceptable. Brava, and thank you for being able to better express what I still struggle to put into words. It is my own dream that one day humans won’t need dx to prove anything or to get the help they need because we all accept emotional, intellectual, and psychological diversities in the first place, just as we are socially evolving to accept physical diversities. ❤

    Liked by 2 people

    1. And I approve your comment one hundred percent! 😉 :). Incredibly well-stated!

      My experience mirrored what you described; even though I specifically cautioned that I wasn’t trying to start a war with that poll, that’s where WW3 broke out anyway. That saddened me deeply. Some people can’t get a diagnosis, or for some reason (several are legit!) don’t want one. But that doesn’t change the fact that they were born autistic, and have come to realize–through one way or another–that they are. Do they not face the same struggles and challenges? Do they not need the same community support? Are they in any lesser need of friendships and connections with people with whom they share common ground? Are they any less deserving of acceptance? My opinion is that unless and until they prove otherwise, they’re every bit as equally “legit” as anyone privileged enough to have obtained a magical piece of paper. But whoops, I’m getting ahead of myself; that’ll be the topic of my third and final post on this subject, if I’m “ballsy” (I apologize if that’s crude 🙂 ) enough to write it. If I am, it’ll be sometime tomorrow. But I digress… Please forgive me 🙂

      TL;DR, I totally agree with you ❤

      Lol 🙂

      Liked by 1 person

  2. Have you heard of other people saying these people exist? Seems like I’m missing some information. From stuff being said on twitter yesterday it seems like there’s a specific person that people are saying isn’t autistic (I think it’s really mean to doubt someone’s diagnosis).
    My experience is that autism is still very stigmatised and it’s rare that anyone would want to be autistic, probably part of the reason why most blogs and twitter accounts are anonymous. In the UK at least, you don’t get benefits for being autistic. I also think that it’s rare for people to self dx without doing a lot of research. It took me many months of indecision before I finally came to the conclusion I was autistic.

    Liked by 3 people

    1. @typicallyindividual “…n the UK at least, you don’t get benefits for being autistic. I also think that it’s rare for people to self dx without doing a lot of research. It took me many months of indecision before I finally came to the conclusion I was autistic.”

      If you are talking about benefits in the welfare sense then you are completely wrong. And I have come across a number of people that self -diagnose, and they clearly haven’t got it.

      How about this:
      “I have a few social problems…that means I must have AS. OMG it means I must be a genius!”

      Or this:
      “I don’t need a diagnosis, I’m too intelligent for that. In fact I never go to the doctor as I self-diagnose all the time”

      Or this:
      “I’ve tried to get a formal diagnosis, twice, and both times the doctors said I didn’t have it. But I know they’re wrong.”

      Or how about the paedophile that tried to use autism as an excuse to cover up his sociopathy, and gain access to vulnerable people.

      And on and on. If you live in the UK but don’t know these things then you need to get out more.

      Liked by 1 person

    2. I agree with this 😊

      I’m not aware of any specific person in particular; in fact, I haven’t come across any at all so far 😊. There are a few specific people saying they have come across such people, though. One of them didn’t go into much detail other than that the experience was traumatic for them. They are very vehemently against self-diagnosis for that reason.

      I’m aware that there are people (in general, and so far, exclusively NTs) who do various things for attention, and thus, it seems plausible to me that some of those attention-seekers might attempt to use an autism label in their behaviors. But that’s theoretical on my part; I have no personal experience.

      Agreed, that to identify as an Aspie/autistic person is serious and I, too, encounter stigma–not much personally, since I keep my status to trusted people only, and I especially keep it separate from my professional career. It’s not something I want to go full-on public with, at least not until average attitudes do a complete turnaround. 😊

      I’m in the US, and we don’t get benefits here, either. There’s VERY little (read: nothing) to gain for us. So yeah, personally I think that the “false diagnosis” phenomenon might be overrated/overstated, but then again, I lack the experience to know for sure. 😊💙

      Liked by 3 people

    3. I came out in 2008 and have been documenting my struggle to tolerate and keep friends online, and it’s been really difficult fielding through others with a variety of doubts, fears, and dx’s flock around and start fighting. I’ve trained my hardcore readers how to lurk for all our benefits, very rarely commenting on anything I do anywhere because I don’t want continual tiff and ruffled feathers around me. Some of my most defensive stalker ‘friends’ are the least tolerant of my actual personality yet determined to win my attention for some reason. Many of them refuse to admit they at least need evaluation and help with some degree of depression and self harm. Standing up in public and staying public with real stuff is challenging, and I finally copied my actual dx to my blog, which is bad enough that I’ve never seen anyone beat it for honesty. I’ll support anyone attempted to publicly share that they live with a challenge because I know it can take years to truly own it and not care what others think about it. ❤

      Liked by 2 people

  3. It doesn’t make sense as if it’s not ok for the individual to self dx (because they need a full assessment by a professional) then surely it’s not ok for the person deciding they aren’t autistic to say they aren’t autistic (unless they are a qualified professional who carries out a full assessment)? The anti self dx people can’t have it both ways. They can’t say people aren’t autistic as they just don’t know?
    I think the bigger problem is unqualified people saying autistic people aren’t autistic.
    I love that you brought this up on twitter. It is an interesting debate. The community is certainly divided on this.

    Liked by 5 people

    1. Yes!! You bring up SUCH a great point. If self-diagnosis is not OK, then denial of self-diagnosis isn’t OK, either. You’re absolutely right; it seems to me to be a double-standard. And yes, I think that when unqualified people try to tell others they’re not autistic just because they haven’t been formally diagnosed, that could do just as much–if not sometimes MORE–personal damage to someone as someone saying they’re autistic when they’re not. Thank you for your encouragement and your comment! I love that you speak what’s on your mind 🙂 ❤

      Liked by 1 person

  4. This whole thing makes my head hurt. And interestingly, it’s been my observation that most of the ones denying self-DX are white – usually male – and heterosexual. People who don’t have a ton of experience with institutionalized exclusion and marginalization, who also can expect better treatment from professionals because of shared culture and vocabulary. When you start digging into marginalized communities and people who have been excluded from the benefits of straight, white privilege and entitlement (because truly, it exists), you see a very different side of things.

    Those denying self-DX seem to often be defending “their own” territory. I get it, that AS is often used as an “excuse” — especially by lawyers — and that it can be used to mask other comorbid conditions like narcissist sociopathy, BP, etc — but at what price do we get all orthodox about it? Seriously, the definition of autism hasn’t even been around more than 100 years AND it keeps changing. Do we really want to put the power of defining who we are in the hands of people who can’t seem to agree on who we are or how we are, anyway?

    The infighting seems long on orthodoxy and short on compassion. Lots of shouting. Not much listening … or attempts at understanding. Thanks for writing this. I found it quite balanced.

    Liked by 5 people

    1. I love what you said!! All of it.

      Yep, from what I’ve seen so far, pretty much ALL of the militant anti-self-Dx are white, and in my experience, at least 60% (a solid majority) are known to be male (although a select few of the more outspoken ones are female…and for others, I’m unsure of their gender (which is fine, of course)).

      Something that’s interesting to me, is that when I poked around on Twitter after writing these posts (mostly people whom I didn’t know), I noticed a trend in the anti-self-dx crowd that had been alluded to by another commenter: disability status. Some of the ones who are the most entrenched in the disability aspect of their diagnosis were also some of the most outspokenly anti-self-diagnosis. From a psychological standpoint, it’s almost like they’re somehow instinctively/subconsciously “protective” of their status. It’s *almost* like they’re saying (and this is going to be quite a blunt paraphrasing, and this is purely my supposition), “how dare you work and have relationships and be happy with who you are? If you do, you’re not *truly* Aspie, because if you were Aspie, you’d be more disabled! Go get a formal diagnosis and if you can hack that, THEN come back to us and we’ll begrudgingly accept you, but only because we pretty much have to accept you if you’re official.” If that’s what’s truly happening deep down, then in a way, that’s satirical (*not* meant to be cruelly or insensitively so!), but in a way, it’s sad–for *everyone* involved. It would demonstrate an actual underlying *lack* of tolerance, acceptance, desire for diversity and progress, etc, caused and clouded/influenced by their own accompanying depression or other co-occurring condition.

      I’ve seen a lot of this in my family practice; there’s a significant subset of (almost always NT) people who come to see me for help, I want to help them, I know that I can, we both know they need it, they think they *want* it, but when it comes to giving them a (very) sound and complete Care Plan (i.e., treatment plan)…….they drop out. It’s almost like their disease or condition has become a part of their identity and they’re protective of it, scared to let it go, wondering who they’d be (and how “legit” they’d feel as people) if they were actually to resolve their illness? If they’ve let that chronic illness into the core of their being, then it’s going to be a struggle to get them to agree to do what it takes to heal. I may very well be biased because of my own influences from my everyday job, but I wonder if something similar might be taking place here? 🙂

      Whoops, sorry for the info-dump and rambling lol. Thank you for all of your kind words! I always love when you comment – you have such wonderful thoughts and ideas, and you’re extremely supportive and encouraging. I enjoy reading what you write, whether it’s on your blog or those of others. 🙂 ❤

      Liked by 2 people

  5. Thanks for your posts on the topic. Like you, I haven’t personally encountered many, in any people trying to use “autism” to excuse poor behavior. I also gathered others online have encountered people like that. That’s a type of behavior that would land someone in the category I politely labeled “jerks” in my post. Part of the problem, though, is that “jerkiness” isn’t limited to a single category of person. A person with an official ASD diagnosis could also try to use that diagnosis to excuse poor behavior. I don’t tend to block people on twitter. I generally manage what I see by either not following or muting people instead. (People know if they are blocked. They don’t know if they are muted.) People should take action to protect themselves from abuse both online and off. I just don’t see the status of someone’s diagnosis as a particularly useful marker for distinguishing what sort of human being a person may be.

    Liked by 1 person

    1. Agreed! Thank you for your perspective. 🙂 There are jerks–and nice people–pretty much everywhere, nestled under every label, in every walk of life, from what I’ve found so far. No category of people is immune to exclusionary, cruel, entitled, or pretentious behavior. One thing that I have noticed is that some people do use their official diagnosis to be “less personal”, or even antisocial jerks. “Oh, that’s just my autism.” I may have noticed it on Twitter at some point since starting my account in July, and I think I’ve heard that in general passing elsewhere, too. My dad always said, “excuses are for losers” (he was pretty non-PC and he could be harsh at times, but most of the time, there was merit to what he said), and I think that to use autism to excuse BAD behavior is wrong. (To use it to *explain* awkward behavior or a misunderstanding (i.e., taking something literally) is perfectly legitimate in my book.)

      Like you, I block very few people on Twitter. It’s a very last resort for me. Usually, if I block someone, it’s because they were irrational and immature, cruel jerks who refuse to be enlightened or even listen to reason, who go trolling for posts/tweets to hold up and ridicule, etc, and acted this way on a chronic basis. If they never said anything positive or unifying to counter-balance their negativity, that clinches my decision to block. But that’s very, very rare. I’m pretty tough to offend and I usually try my damnedest to seek even a tiny strip of common ground. I also block p0rn accounts, of course. No room in my life for those 🙂

      Thank you for your comment and you info. I’m also really enjoying your blog! 🙂

      Liked by 2 people

  6. Yes, to use autism to excuse bad behavior is wrong.I just blocked on Twitter one person that really made hurt to me just to protect myself. Then my best friend blocked me… and I left TW because it was a great pain for me reading everyday that my best friend had blocked me. He didn’t give any other choice of freedom.I wasn’t free to stay here. I had to go. He was my best friend a part from he is autistic or not…

    Liked by 1 person

      1. I’m so sorry that happened to you! 😢 I can’t believe that anyone in their right mind would block you. ❤️ I totally understand why you left Twitter, and I don’t blame you at all; I probably would have done the same thing. My personal opinion is that it’s their loss; you’re a lovely person and anyone who can’t see that isn’t worth the time 💙💚💙

        Liked by 1 person

      2. Yes, certainly! I hope he does give you that opportunity one day so that you can clear it up for your own peace of mind 💐💝

        Liked by 1 person

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