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May 10 2013

Self-Diagnosis and Its Discontents

There’s a certain scorn reserved for people who diagnose themselves with mental illnesses–people who, based on their own research or prior knowledge, decide that there’s a decent chance they have a diagnosable disorder, even if they haven’t (yet) seen a professional about it.

I understand why psychologists and psychiatrists might find them troublesome. Nobody likes the idea of someone getting worked up over the possibility that they have a mental illness when they really don’t. Professional mental healthcare workers feel that they know more about mental illness than the general population (and, with some exceptions, they do) and that it’s their “job” to serve as gatekeepers of mental healthcare. This includes deciding who is mentally ill and who is not.

Self-diagnosis also gets a bad rap from people who have been professionally diagnosed with a mental illness. They feel that people who self-diagnose are doing it for attention or because they think that diagnosis is trendy.

This actually bothers me much more than the arguments against self-diagnosis coming from professionals. Why?

Because the claim that people who self-diagnose are just “doing it for attention” or because they think it’s “cool” is the exact same claim frequently made about people who get diagnosed professionally.

To be clear, I’m not saying that people never label themselves as mentally ill for attention. Maybe some do. Maybe a significant proportion of people who self-diagnose don’t really have a mental illness at all. I’d have to see research to know, and from my searches so far I haven’t really found much research on the phenomenon of self-diagnosis. (But I’m taking note of this for my master’s thesis someday.)

However, there’s a difference between someone who’s feeling sad for a few days and refer to themselves as “depressed,” and someone who’s been struggling for weeks, months, or years, and who has read books and articles on the subject and studied the DSM definition of the illness. The former may not even count as “self-diagnosis,” but rather as using a clinical term colloquially–just like everyone who says “oh god this is so OCD of me” or “she’s totally schizo.” (This, by the way, is wrong; please don’t do it.)

(It’s also likely the case that some people self-diagnose because they have hypochondria. However, the problem is not that they are self-diagnosing. The problem is that they have untreated hypochondria. Maybe diagnosing themselves with something else will get them into treatment, where a perceptive psychologist will diagnose them with hypochondria and treat them for it.)

Even if some people who self-diagnose are wrong, I still think that we should refrain from judging people who self-diagnose and take their claims seriously. Here’s why.

1. It gets people into treatment.

I wish we had a system of mental healthcare–and a system of social norms–in which everyone got mental health checkups just as they get physical health checkups. For that, two main things would have to change–mental healthcare would have to become affordable and accessible for everyone, and the stigma of seeing mental health professionals (whether or not one has a mental illness) would have to disappear. (There are other necessary conditions for that, too–the distrust that many marginalized people understandably have for mental healthcare would have to be alleviated, and so on.)

For now, going to see a therapist or psychiatrist is difficult. It requires financial resources, lots of time and determination, and a certain amount of risk–what if your employer finds out? What if your friends and family find out (unless they know and support you)? What will people think?

Because the barriers to seeing a professional are often high, many people need a strong push to go see one. Having a strong suspicion that you have a diagnosable mental illness can provide that push for many people, because nobody wants to go through the hassle of finding a therapist that their insurance covers (or finding a sliding-scale one if they don’t have insurance), coming up with the money to pay the deductible, taking time off work to go to the appointment, dealing with the fear of talking to a total stranger about their feelings, and actually going through with the appointment, only to be told that there’s “nothing wrong” with them.

As much as I wish things were different, the reality right now is that relatively few people go to therapists or psychiatrists unless they believe that they have a mental illness. If self-diagnosing first gets them into treatment, then I don’t want to stigmatize self-diagnosis.

2. It helps them find resources whether or not they see a professional.

In the previous point, I explained that for many people, self-diagnosing can be a necessary first step to getting treatment from a professional. In addition, once people have diagnosed themselves, they are able to seek out their own resources–books, support groups, online forums, etc.–to help them manage their symptoms. This can be extremely helpful whether or not they’re planning on getting treatment professionally.

While psychiatric labels like “depression,” “generalized anxiety,” and “ADHD” have their drawbacks, they are often necessary for finding resources that help people understand what they’re going through and help themselves feel better. If I’m at a library looking for books that might help me, asking the librarian for “books about depression” or “books about ADHD” will be much more useful than asking them for “books about feeling like shit all the time and not wanting to do anything with friends” or “books about getting distracted whenever you start work and not really having the motivation to finish any of it and it has nothing to do with laziness by the way.” Same goes for a Google search.

It’s certainly fair to be worried that people looking on their own will find resources that are unhelpful or even dangerous. But I think this is less of a problem with self-diagnosis per se, and more of a problem with the lack of scientific literacy in our society, and the lack of emphasis on skepticism when evaluating therapeutic claims. For what it’s worth, going to see a mental health professional will not necessarily prevent you from encountering quackery and bullshit of all kinds. And in any case, the blame does not lie with the people who self-diagnose and then fall for pseudoscientific scams, but with the people who perpetrate the scams in the first place.

This point is especially important given that many people will not be able to access professional mental healthcare services for various reasons. Maybe they can’t afford it; maybe they work three jobs and don’t have time; maybe they can’t find a therapist who is willing to accept the fact that they are trans*, kinky, poly, etc. Maybe they are minors whose parents are unwilling to get them into treatment. Maybe they were abused by medical professionals and cannot go back into treatment without worsening their mental health.

There are all kinds of reasons people may be unable to go and get their diagnosis verified by a professional, and most of these are tied up in issues of privilege. If you have never had to worry that a doctor or psychologist will be prejudiced against you, then you have privilege.

3. It can help with symptom management whether you have the “real” disorder or not.

At one point when my depression was particularly bad I noticed that I had some symptoms that were very typical of borderline personality disorder. For instance, I had a huge fear that people would abandon me and I would bounce back and forth between glorifying and demonizing certain people. If someone made the slightest criticism of me or wasn’t available enough for me, I would decide that they hate me and don’t care if I live or die. I had wild mood swings. That sort of thing. It’s not that I thought I actually had BPD; rather, I noticed that I had some of its symptoms and wondered if perhaps certain techniques that help people with BPD might also help me.

Luckily, at this time I was still seeing a therapist. So in my next session, I decided to mention this observation that I had made, and the conversation went like this:

Me: I’ve noticed that I have some BPD-like symptoms.
Her: Oh, you don’t have BPD.
Me: Right, but I seem to have some of its symptoms–
Her: No, trust me, I’ve worked with people with BPD and you do NOT have BPD.

I suppose I could’ve persevered with this line of thinking, but instead I felt shut down and put in my place. I dropped the subject.

So determined was this therapist to make sure that I know which mental illness(es) I do and do not have that she missed out on what could’ve been a really useful discussion. What she could’ve done instead was ask, “What makes you say that?” and allow me to discuss the symptoms I’d noticed, whether or not they are indicative of BPD or anything else other than I am having severe problems relating to people and dealing with normal life circumstances.

The point is that sometimes it’s useful to talk about mental illness not in terms of diagnoses but in terms of symptoms. What triggers these symptoms? Which techniques help alleviate them?

So if a person looks up a mental disorder online and thinks, “Huh, this sounds a lot like me,” that realization can help them find ways to manage their symptoms whether or not those symptoms actually qualify as that mental disorder.

This is especially true because the diagnostic cut-offs for many mental illnesses are rather random. For instance, in order to have clinical depression, you must have been experiencing your symptoms for at least two weeks. What if it’s been a week and a half? In order to have anorexia nervosa, you must be at 85% or less of your expected body weight*. What if you haven’t reached that point yet? What if you don’t have the mood symptoms of depression, but you exhibit the cognitive distortions associated with it? Acknowledging that you may have one of these disorders, even if you don’t (yet) fit the full criteria, can help you find out how to manage the symptoms that you do have.

4. It helps them find solidarity with others who suffer from that mental illness.

I understand why some people with diagnosed mental illnesses feel contempt toward those who self-diagnose. But I don’t believe that sympathy and solidarity are finite resources. If someone is struggling enough that they’re looking up diagnostic criteria, they deserve support from others who have been down that path, even if their problems might not be “as bad” as the ones other people have and/or have not yet been validated by a professional.

Acknowledging that you may have depression (or any other mental illness) can help you find others who have experienced various shades of the same thing and feel like you’re not alone.

My take on self-diagnosis comes from a perspective of harm reduction. The idea is that strategies that help people feel better and prevent themselves from getting worse are something we should support, even if these strategies are not “correct” or “legitimate” and do not take place within the context of established, professional mental healthcare.

We should work to improve professional mental healthcare and increase access to it, especially for people in marginalized communities and populations. However, we should also acknowledge that sometimes people may need to help themselves outside of that framework. These people should not be getting the sort of condescension and eye-rolling they often get.

~~~
*The diagnostic criteria for eating disorders are expected to improve with the release of the new DSM-V, but I’m not sure yet whether or not the 85% body weight requirement will still be there. In any case, this is how it’s been so far.

34 comments

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  1. 1
    Chris Clarke

    I self-diagnosed with ADD at age 44-45. Went to see pshrinks at Kaiser and they quickly confirmed a mild to moderate case. Probably the fact that I forgot about the intake interview helped. Much of what you say above rings true. Thanks.

    1. 1.1
      Miri, Professional Fun-Ruiner

      This sounds like the case with a LOT of adults who have ADD/ADHD. If someone doesn’t get diagnosed in childhood (which can be due to all sorts of factors–being smart and finding schoolwork easy; having the inattentive type rather than the hyperactive type, being female, etc.), it’s unlikely that they’ll get diagnosed as adults unless they realize on their own that they have it and advocate for that diagnosis.

      I’m glad, though, that you got that diagnosis quickly. Some people really have to struggle to convince doctors that they’re not “just lazy.”

  2. 2
    Keely (@keelyellenmarie)

    1. This is great, and I’m totally in agreement. Awesomeness.

    2. I’ve had psychiatrists and therapists argue with each other about whether or not I qualify for BPD. Basically, I definitely have anxiety and depression, I definitely have had at some points enough BPD symptoms to technically qualify, and I definitely experience many of the thought processes common in BPD. But… I don’t seem “bad enough” to have BPD. My distorted thought processes characteristic of BPD don’t often result in the BEHAVIORS characteristic of BPD, and when they do they tend to be much more mild versions of those behaviors than is typical.

    All that said… I have learned a lot from reading personal accounts from BPD sufferers, being in group therapy with other people who are “maybe kind of borderline”, and from treatment modalities usually aimed at borderline sufferers (DBT!!). In particular, ‘mindfulness’-based ideas/practices, as well as the concept of ‘dialectics’ were quite helpful for me.

    I got really lucky in that I stumbled into a therapist/psychiatrist team that was willing to aim BPD programs and resources at me while also saying “you may or may not officially have this, but we think these things could help”.

    Anyhow, dunno where you are now on the whole “I maybe have some borderline symptoms” thing, but if its still a thing for you, maybe consider working through a DBT workbook and/or doing mindfulness stuff?

    1. 2.1
      Miri, Professional Fun-Ruiner

      But… I don’t seem “bad enough” to have BPD. My distorted thought processes characteristic of BPD don’t often result in the BEHAVIORS characteristic of BPD, and when they do they tend to be much more mild versions of those behaviors than is typical.

      YES. That sounds exactly like what I had going on.

      Anyhow, dunno where you are now on the whole “I maybe have some borderline symptoms” thing, but if its still a thing for you, maybe consider working through a DBT workbook and/or doing mindfulness stuff?

      This is, in fact, exactly what I tried! Great minds think alike. Some of it was helpful; the mindfulness/meditation stuff not so much because I just hated it for some reason. Maybe if I had a professional and/or a group doing it with me, I would’ve had a very different reaction to it, which is why I wish my therapist had been more receptive!

  3. 3
    fantysq (a Radical Feminist and a Militant Atheist)

    I’d say diagnosing yourself with depression is very easy since it’s so very obvious. I self-diagnosed when I was 15 and then went to a psychologist and she confirmed it and sent me off for treatment. (Also, I happened to have parents who really didn’t feel like signing me up for a visit to a psychologist. I basically had to declare a strike and tell them that I won’t go to school until I met a psychologist, and they finally relented after three weeks of me sitting at home.)

    Anyways, I’ve had lots of fun diagnosing myself with random stuff. Some of it was obviously wrong (no, fantysq, you’re not a sociopath) and some obviously correct (a bad case of anxiety is hard to misinterpret).

    1. 3.1
      Knabb

      I can’t say I agree with this. I diagnosed myself with depression eventually, but it took a suicide attempt to realize I had it, despite the diagnostic fitting me perfectly and taking several online tests which outright stated that I was severely depressed and at risk of suicide. I’m not saying it can’t be easy to diagnose one’s self with depression (after all, you did and said it was easy), but it certainly isn’t guaranteed to be.

    2. 3.2
      Ceri Wilkinson

      Depression may be obvious for some, but it wasn’t for me. It took a doctor to tell me that what I was describing sounded like depression to her; I couldn’t see a pattern – I just thought I couldn’t sleep and didn’t know why I couldn’t stop crying. Granted, that would probably sound like depression to other people when put that way, but one of the great ironies of depression (at least for me) is that it clouds your ability to think rationally and to see patterns.

  4. 4
    Mark Kline

    I’ve been researching (unsuccessfully, so far) attitudes towards mental illness among healthcare providers for a few days. In lecture a few weeks ago, we were taught that physicians as a whole have a large blind spot with regard to substance abuse treatment. For example, only 2% of physicians knew alcoholism had any pharmacological treatments available. Disulfarim has been available for… 60+ years. Oops.

    I hypothesize you’re going to see a lot of mental illness ignorance and prejudice even amongst people who should know better… but I am still hunting down evidence. Watch this space. ;)

  5. 5
    kagekiri

    @2 fantysq:

    Yeah, I had a phase of being entirely unsure of what I had, and thus diagnosing myself with everything as I read various confirming characteristics of various mental illnesses. “Do the mood swings I have make me bipolar?” “Does not wanting to go out ever or meet new people mean Social Anxiety disorder?” “Am I an uncaring sociopath for being so selfish??”

    Not sure I’d describe it as fun, though (or I’m totally missing your sarcasm), as it made me examine myself instead of being numb and came with constant self-hate as I screamed inside “WHAT IS WRONG WITH ME!?”

    Luckily, JT’s video on mental illness pushed me to go ahead and ask about diagnosis by professionals, even when my normal physician was doubtful that I had any mental illness. After weeks of self-inflcted suffering where I beat myself up for needing help or trying to “find the easy way out” of my utter lack of motivation and hope, I got a proper diagnosis of clinical depression and started treatment and therapy.

  6. 6
    Ben Gilder

    I take it to be a bit like when we have a runny nose and a slight fever, we often just say ‘I have a cold/flu’ when it could be a number of differing diseases. At least its an acknowledgement there is something wrong and maybe time to get treatment(in my case I correctly self-diagnosed myself with Autism, but incorrectly with Anxiety[turned out to be PTSD with Anxiety and Depression as Symptoms]).

  7. 7
    Onamission5

    Another point– for some people, a medical diagnosis for mental health simply isn’t an option they have for themselves. Either it is cost prohibitive or mental health professionals are unavailable to them for other reasons, location being one (let’s talk about how desperately underserved rural areas can be for mental health services, omg). So for those folks a self-dx is probably the best or possibly *only* resource they’ve got. Accurate? Maybe, maybe not, but if a self-dx opens the door for a person who is having difficulties to access resources and strategies which help them cope with their issues and give them a means to feel less alone, that’s better than walking around feeling invalidated, isolated, and broken.

  8. 8
    Rowan vet-tech

    I think a large reason of why the bad rap for self-diagnosis exists is because of the sheer number of people who used a self-diagnosis of aspergers to ‘explain’ why they were socially inept, or rude, or inconsiderate, or unable to handle criticism. These individuals rarely, if ever, seek out treatment or use it to manage symptoms.

    I used to be on various otherkin forums, and it seemed like everyone and their aunt was self-diagnosed as an ‘aspie’. And they would prop their beliefs up with that self-diagnosis by making people treat them with kid gloves. Even if they were claiming such things as being the reincarnation of a dragon that existed on this Earth that was 300 feet long, with a 100 foot wingspan, that weighed 300 tonnes and yet could fly. Or if they were claiming that they were physically growing wings RIGHT NOW.

    That has been the vast majority of my encounters with self-diagnoses in any form. And I’ll admit it’s soured me, though I still give most folks the benefit of the doubt.

    1. 8.1
      Miri, Professional Fun-Ruiner

      Right, I’ll grant that such people exist. I just think it’s wrong to use that as an excuse to further marginalize people who are genuinely suffering. I’d rather take someone seriously when I shouldn’t have, than not take someone seriously when I should. Sounds like you’ve come to pretty much the same conclusion, though.

    2. 8.2
      Lindsay

      I used to be on various otherkin forums, and it seemed like everyone and their aunt was self-diagnosed as an ‘aspie.’ And they would prop their beliefs up with that self-diagnosis by making people treat them with kid gloves.

      Oh, is *THAT* where all of those people are? I keep hearing about all these people online who self-diagnose with Asperger’s just so they can act like assholes to everyone and not ever be called on it, but I almost never see it. Instead, I see people self-diagnosed with autism or Asperger’s who … probably really are autistic, because they describe having a lot of the same experiences, difficulties, etc. that I, a professionally diagnosed autistic person, have had. Older people and women, especially, due to diagnostic-criteria wonkiness. (I actually consider it a minor miracle that I *was* diagnosed, since it happened at a time before Asperger’s was a thing, and I was a precocious talker, had a wild imagination, *and* was a girl.)

      1. 8.2.1
        Rowan vet-tech

        Every now and then I pop back on those old forums, just to be again in awe of the absurdity. I supposedly have an entire army of astral dragons that were sent to kill me about 5 years ago, because I didn’t believe that an individual had made his own dimension where you could heal from demon battles on the astral plane. It was apparently orange colored and named 64.

        And the incarnated daughter of God was supposedly to unleash a spell that would kill me last year.

        And the death spell that was supposed to wipe out most of a forum when we mentioned to someone that his “brand new techniques” for energy manipulation were, in fact, the same techniques with different names.

        Oh, and let’s not forget the tantrum when someone claimed I was astrally pregnant and I insisted I was not.

        Each one of those individuals, and many more, when called on their flaming assholery responded with “It’s not my fault. I have aspergers.” Maybe some of them actually had it, but damn if they didn’t give aspergers a bad rap in my mind for a long time.

        So yeah. Otherkin forums are… interesting. My mental picture of Self may still be a dragon, but I don’t identify with those folks anymore. Especially when the rudeness over my disbelief in souls and reincarnation began to really boil over.

      2. 8.2.2
        Nathanael

        I really didn’t want to believe that I fit the diagnostic criteria for Asperger’s syndrome.

        I do, though. Really, to a T, exactly, perfectly. Every damn thing.

        I didn’t bother to get professionally diagnosed because… well, at this age, it doesn’t get me anything. Knowing the patterns gives me stuff I can look out for (I know I’m crap at reading other people’s emotions), but a diagnosis gives me nothing, because there isn’t actually any known treatment for high-functioning adults.

        1. 8.2.2.1
          Nathanael

          Oh, and self-employed, so it wouldn’t get me any ADA accomodations either.

  9. 9
    Random Bystander

    Greta has two good essays on Harm Reduction, that some folks here might not have seen:
    http://freethoughtblogs.com/greta/2008/05/12/the-harm-redu-1/
    http://freethoughtblogs.com/greta/2008/10/07/the-harm-reduction-model-of-politics/

    1. 9.1
      Miri, Professional Fun-Ruiner

      I’m reading the first one of these and I love it already. Thanks for the links! I really need to read more of Greta’s older stuff.

  10. 10
    Deoridhe

    Speaking as someone who works in the field and is sometimes involved in diagnoses, self-diagnosis is actually hugely valuable and something to be glommed onto with all my energy. Most of the time, I’m doing the educating on symptoms and trying to link those up with the person’s experience (I work with people whose illness is so extreme they often are much lower functioning), so when I have a client actively going out and finding out stuff and coming back to ME with it? Yahtzee. Even if it ends up being inaccurate (we can figure that out together), it’s an indication of self-analysis, which is very valuable.

  11. 11
    butterflywgs

    Great post, completely agree. ‘Self-diagnosis’ I think is even more stigmatised here in the UK.

    ‘If you have never had to worry that a doctor or psychologist will be prejudiced against you, then you have privilege.’ This. Basically, anyone who is not a straight white middle/upper-class male. There was a report here just today about deaths of people with mental illness following ‘contact with’ police/ mental health services (ie abuse) and surprise, these were disproportionately black people. And don’t get me started on the sexism and misogyny.

    I self-diagnosed my depression after reading a lot about it and taking several online tests, over months, of course I was telling myself ‘you’re not depressed, you just need to get it together’ (classic depression thought). Went to GP. Tick-box ‘scale’ not ‘why do you think that, what’s going on?’ I would’ve explained the inability to wash my hair, the crying, the endless rumination on why I suck, the inability to get out of bed in time for work yet inability to go to sleep at a sensible time…etc…but she agreed, and also diagnosed generalised anxiety which I hadn’t thought about but which made sense to me.

    ‘The point is that sometimes it’s useful to talk about mental illness not in terms of diagnoses but in terms of symptoms.’ Absolutely. As you correctly said, the criteria are tick-boxes and who cares if someone has been depressed for a week and a half not 2 weeks, or hypomanic for 3 days not 4? One person’s depression for example can look very different from another’s. So why are labels helpful? They’re not. ‘Problems with low mood, poor sleep, overeating, lack of motivation’ e.g. would be far more useful.
    With the BPD-like symptoms you describe and your therapist, you’re right that she should have asked what made you think that, however you did start a conversation about BPD-like symptoms. I wonder what their response would have been if you had said ‘Last week, person x wasn’t available enough to me and this made me feel they didn’t care about me’ for example? I can relate a lot to the symptoms you described. Like you I don’t feel I have them badly enough to qualify for a diagnosis…seems the psychs disagree, since I have a diagnosis, which I am disputing.
    What you described sounds totally normal for depression anyway…as I said, I relate…I read things like that on mental health blogs all the time and go to a depression support group where I have heard so many people describe those things.
    Of course if we hate ourselves we are going to think everyone else hates us and is going to abandon us.
    You said you only have these issues when you are very depressed whereas a personality disorder is habitual and always there. You don’t seem to have an unstable sense of self. I know people with BPD and they really are *always* in crisis and change their identity every ten minutes. So I really doubt you have BPD – I know you didn’t say that you did, but some advice: please be very careful about disclosing ANY symptoms that in any way sound like BPD. You do NOT want a diagnosis of it. It is incredibly stigmatising and will pretty much mean you get no help, are not taken seriously and are told you are attention-seeking.

    And completely agree, if someone is struggling and in pain, and a self-diagnosis allows them to help themselves – who is anyone to say they shouldn’t? Books and websites have been far more help to me in living with my issues than any professional ‘help’.

  12. 12
    Daniel Schealler

    Scene: GP’s office. Daniel is 6 years old. Second year in a row that he’s come down with a nasty infected cough over winter. Daniel’s mother (M) has taken him in to see their GP.

    GP: Well Daniel, what seems to be the problem today?
    D: Um, I have the same thing as last year, where I cough lots and lots, and it’s green when I spit it out, so I need med cin. But I’m allergic to pen sil in, but the ones you gave me last time worked good, so you should give me that.
    M: *mortified embarrassed groan*
    M: Daniel! Don’t tell the doctor what to do, that’s his job, not yours, and it’s very rude to talk to grown-ups that way.
    D: *looks down into lap*
    M: Say sorry to the doctor.
    D: ‘sry doctor.
    GP: That’s all right, Daniel. Let’s have a look at you.

    *doctor does the usual stuff – check’s ears, throat, listens to cough, etc*

    GP: Okay, come sit back down.
    D: *sits down*
    GP: (struggling to keep voice level). Well now, it seems that Daniel has the same infection with his bronchitis as last winter. As he is allergic to penicillin, I’m going to recommend he repeat the same prescription as last time. Make sure he finishes them.
    D: *looks smugly up at mother*
    M: *glares at son*
    M: *glares at doctor*
    M: *glares at son*
    M: *glares at doctor*
    M: What annoys me most is I’m now going to have to spend $45 for that diagnosis.

    ^_^

  13. 13
    Freja

    It’s a good post and I agree with a lot of it, but I have to also agree with rowanvt that sometimes, self-diagnosis is used as an excuse to get away with treating other people badly, especially autism. I don’t mean to be rude or ableist about it, but in my experience, self-diagnosed autists don’t just give diagnosed autists a bad reputation for making it all up (that would, after all, be a problem with the accusers, not the people who self-diagnose), they also use it as an excuse to engage in behaviours that are upsetting towards many diagnosed autists.

    The classic “Don’t rudely tell a guy who wont leave you alone to get out of your personal space. He might be autistic and not mean to, so it’s unfair to criticise him”. The thing is, lots of people with autism are very uncomfortable with being approached by strangers in unexpected ways under unstructured circumstances, and won’t always know how to react. Blaming them for being rude and upset when strange guys (it’s pretty much always guys) suddenly start talking at them, and expecting them to take responsibility for the emotional well-being of these guys, is, imo, far more ableist than merely stating “I don’t care what you are, go away” to someone who doesn’t know about boundaries.

    Furthermore, the narrative of women needing to be gentle towards intrusive men is almost exclusively pushed by guys who’re either neurotypical or self-diagnosed. I’ve talked to men with autism who don’t want to unintentionally upset anyone, and the thought of millions of women who wont tell them directly to go away is extremely upsetting to them. And they’re insulted by the idea that the reason women shouldn’t openly express their discomfort is because they should be afraid of offending or upsetting a man on the autistic spectrum.

    From my experience, there’s a legitimate gap between self-diagnosed and professionally diagnosed autistic men. The professionally diagnosed generally worry about unintendedly upsetting others, while the self-diagnosed generally want more leeway to engage in behaviours that are upsetting. The professionally diagnosed generally want women to be more direct, even rude if necessary, while the self-diagnosed instead tend to oppose criticism. At some point, I think we need to ask ourselves if it’s fair for people without a professional diagnosis to take up so much space in the debate about the treatment of autistic individuals (or rather, autistic men), compared to people who’ve been diagnosed professionally, when their agendas are often so opposed.

    And in regards to women on the autistic spectrum, there’s a good article from Feministe which describes it better than I could: http://www.feministe.us/blog/archives/2013/01/24/he-might-be-on-the-spectrum-but-what-about-me/

    1. 13.1
      Miri, Professional Fun-Ruiner

      I think if people are using a supposed diagnosis of autism in order to try and get off the hook for creeping on people, then they might not actually be “self-diagnosing”; they might simply be lying.

      From everything I’ve read about the autism spectrum, “intrusively hitting on women in public spaces” is NOT one of the symptoms. In fact, plenty of ASD writers that I’ve read resent this whole narrative because they feel that it misrepresents what Asperger’s and autism actually are.

      So if I were to hear someone trying to claim that their self-diagnosed autism entitles them to creep on people, I’m going to have a sneaking suspicion that they don’t really think they have autism at all, but are just trying to find an acceptable excuse for creeping (after all, at that point, any criticism you make of their behavior can just be written off as ableism).

      But I don’t know. I’m loath to accuse people of faking mental disorders.

      1. 13.1.1
        Nathanael

        “The classic “Don’t rudely tell a guy who wont leave you alone to get out of your personal space. He might be autistic and not mean to, so it’s unfair to criticise him”.”

        That’s completely whacked. Sure, as someone self-diagnosed on the autism spectrum, I sometimes have trouble leaving people alone *when I’m angry at them for cheating me or lying to me* or something like that, which from what I’ve read is fairly common… but as Miri says:

        “From everything I’ve read about the autism spectrum, “intrusively hitting on women in public spaces” is NOT one of the symptoms.”
        It sure isn’t. Afraid to even talk to strange women is typical.

        1. 13.1.1.1
          Nathanael

          Actually, that “classic” is even more whacked, and smacks of outright lying. Here’s why.

          A typical person on the autism spectrum has trouble reading subtle cues and non-verbal cues. Therefore, someone on the autism spectrum generally *appreciates it* when you tell them bluntly and plainly “Stop bothering me” or “Back off”. Because it’s *clear*, and clear communication is appreciated.

    2. 13.2
      Miri, Professional Fun-Ruiner

      What I’m trying to say is that there’s a difference between self-diagnosing and simply lying.

      1. 13.2.1
        Freja

        Definitely agreed. However, the difference between correctly self-diagnosing, wrongly self-diagnosing for good reasons (e.g….. a lack of knowledge about a more accurate diagnosis), wrongly self-diagnosing for bad reasons (e.g….. unconsciously looking for excuses), and simply lying, is not always obvious, especially not from the outside.

        I guess that for me, it comes down to whether the self-diagnosing person is using it as a means of obtaining information, the option to associate with like-minded individuals, and reasonable accommodations that one shouldn’t really need a diagnosis to ask for (e.g., getting to sit in the same chair every day because change is stressful), or whether they’re making demands that will often take a heavy toll on others (e.g., wanting pleasantness in response to creepiness). In case of the latter, I have to admit I prefer to have the opinion of a neutral third-person (i.e.. professional) before I agree to it.

        1. 13.2.1.1
          Miri, Professional Fun-Ruiner

          Yeah, that makes sense, especially since if you have symptoms that are actually harming other people, you have a responsibility (I believe) to get treatment.

          Of course, many people lack access to mental healthcare, so that’s still an issue…

  14. 14
    Carlos Cabanita

    From about 16 to 54 years old, I read everything I could find on psychology to get a diagnosis on the way my head worked, which seemed to defy every established notion. Then I diagnosed mysef as a borderline Asperger’s, through an online tool. Later, after a severe depression, I went to a doctor that diagnosed me with ADD. He reserved his prognosis on Asperger’s. I accept that, as I am borderline, but I think the notion is very important to understand myself.
    There is no special initial protection to be extended to autists, to sufferers of any other mental condition, or even any other physical condition. The norms of contact between people must be open to accept and comply with every one in good will, not exert the ableist, sexist, ~ist position that the dominant standards are all right and the others must comply, or else show a special card of exemption. Must people naturally don’t know how to talk with an aspie, or a bipolar, or any other condition, but they may know enough to be decent and not badger or bully them.
    That stupid trope about male autists bothering women seems to me utter bullshit. Everyone of them, as far as I know, including me, is maniacally timid. Harassers that allege autism as an excuse are most probably liars.

    1. 14.1
      Lindsay

      That stupid trope about male autists bothering women seems to me utter bullshit. Everyone of them, as far as I know, including me, is maniacally timid.

      That, or (maybe this is more common for teenage boys or very young men on the spectrum?) they really do make a mistake, and go up to someone and start talking to them when that person would rather be left alone, and when the person says something, like, “Hey, I’m trying to read here, could you please leave me alone?” they will comply immediately. They don’t WANT to be annoying or offensive, so they will probably take any request to back off to heart.

      Either way, yes, I definitely agree that this is not really a thing male autists/Aspies do, as much as it is a way people try to derail discussions of harassment in general.

      1. 14.1.1
        ischemgeek

        I can only speak about the autistic men that I’ve encountered personally, but in general, the autistic men I’ve met (and in one case, am related to) have not sought to use their diagnosis as an excuse for boundary violations, nor have they developed a habit of persistent boundary violations in general. If anything, most of them err on the side of being too distant physically because they’re scared of accidentally crossing a boundary they didn’t realize was there.

        There is one exception to that, but it’s commonly held in the local autistic community that autistic and asshole are not mutually exclusive, even if autistic person is not a synonym for asshole. Furthermore, NT men are far more likely to show disregard for my boundaries than autistic men, in my experience. I won’t try to analyze why, but the numbers are roughly one in 5 for NT men and about 1 in a couple dozen for autistic men.

  15. 15
    ischemgeek

    For me, I’ve been looking for answers to why I feel like I’m constantly muddling along in a language I only have 3/4ths fluency in for years. Since I was about 10. Around 15, I found the criteria for ASD, and went running to my mother exlaiming that it explained everything. She laughed at me, told me I can’t have autism because I can talk, and then asked me why I want to be considered a [slur].

    … So that was the end of talking it over with my parents.

    But in the past 15 years, I’ve done a lot of reading (reading all of the things about whatever’s bugging me is how I cope with problems), and ASD remains the only thing that explains all of it at once. ASD is the only thing where stories of people who have it mirror my stories with often eerie similarity (“Are you me?” is a comment I’ve left on many a blog post written by an adult-diagnosed autistic person). It also is the only thing that I’ve had people who know about it spontaneously ask me whether I have it. It’s also the only thing I’ve had people who know about it spontaneously tell me they think I have it. When I was diagnosed with ADHD, my cousin who’s an OT specialising in developmental disorders asked, “Are they sure you’re not autistic instead?” and my autistic cousin was more blunt: “ADHD? That’s bullshit. You’re autistic like me.”

    Buuut because of the, “You’re just doing it to excuse being an asshole” stigma, I don’t say I’ve self-diagnosed. I say I suspect it because I don’t want to be tagged as one of those assholes who lies about it to excuse being an asshole.

    And I’m saving up for a formal evaluation because I want to have it if I ever need accommodation for stuff.

  16. 16
    Ceri Wilkinson

    Actually, Chris raises a good point that there are certain things (ADD, Dyslexia in some cases, Dyspraxia and Dyscalculia quite often) which are often diagnosed during childhood that an adult will generally self-diagnose because the diagnosis simply didn’t exist when they were a child. I realise that these aren’t generally considered mental illnesses so much as developmental issues but they often seem to be viewed with the same suspicion.

    I’m dyslexic, dyspraxic and dyscalculic (to varying degrees) and although the dyslexia was diagnosed to some extent when I was in my teens, dyspraxia and dyscalculia just weren’t really known about then (or at least they weren’t mainstream). I was just “clumsy”, “disorganised” and “crap at maths” (labels that I applied to myself just as much as they were applied to me by others). Having been diagnosed as an adult has allowed me to research the subjects and find out how to deal with these issues (more so the dyspraxia than the dyscalculia, admittedly) and to stop applying unhelpful labels to myself. It’s also helped me to understand that these “weaknesses” have helped me to develop strengths in other ways.

  1. 17
    Taking another stab at this organization and productivity thing | The Brunettes Blog

    [...] and help, as I’m not currently. (The awesome Miri has great thoughts on the whole subject here.) How I’m using it is seeking out resources, help, and strategies from sources that I do have [...]

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    […] PTSD whether or not the DSM strictly agrees or not. Then it’s less appropriation and more self-diagnosis, which is often the only option for some people. The DSM is constantly evolving, and I predict that […]

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