Why Do People Hate Self-Diagnosers?

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Teehee, I self-diagnose as headless, but I still have a head! Teehee.

Yeah, no.

Interesting. I didn’t realize (until just now) what the term “Aspie” actually meant. I always thought when someone said “I am an Aspie” it was equivalent to saying, “I was diagnosed with Asperger’s” (which, for the purposes of this thread could be either professional diagnosis or self-diagnosis).

But, now I am confused (what else is new). How is that definition (of “aspie”) different from BAP? Or am I mixing things up (again)?

Debates over self diagnosis have been going on in WP since at least 2008 if not since this site was born and will no doubt continue. This is because we are repetitive after all. And there are always people who have joined WP since the last self diagnosis thread. This repeating of topics is the norm around here and Alex with the addition of the "Similar Topics" feature has approved necroposting.

What happened around the time Jerry Seinfeld said he thought he was autistic and retracted it and multiple self diagnosis threads happened concurrently and the word "invalid" often was an oppressive period. That was then, this is now. This thread I think is a good learning experience for the OP whom me and other posters find have some qualities we really like.

As always when threads get nasty we can 1. Try and bring it back to civilized discussion 2. Ask moderators to lock the thread. 3. Report individual offensive posts.

So many of us adults have suffered dearly for this. Life would probably be a lot different if we had known why we struggled.

There was definitely no such thing as ASD/Asperger's back in the late 70s. When I had my assessment I learned there were some concerns about my development when I was about 2 years old. If I got assessed back then what would I have been diagnosed with? I would have probably been misdiagnosed.

The school I attended was very aware of my problems. They sent me for a hearing test because they thought I was hearing impaired and speech therapy. No one knew why I struggled socially and had trouble recognizing faces. I became the target in the school yard. The incessant teasing eventually lead to depression and a suicide attempt when I was a teenager. The psychiatrists suspected I had some form of autism but never bothered to assess me for it. It was a lot easier to give me the BPD label which made me suffer. No mental health professional listened after that.

I was 'officially' diagnosed at the age of 34. Actually I self-diagnosed thanks to Elaine Aron's wonderful HSP website. I knew I had ASD when I first learned about it. It wasn't until I discussed it with my mother that I decided to pursue a diagnosis. I had to do this to heal and clear my name from my BPD misdiagnosis.

I have no problem with self-diagnosers.

Last edited by Didgeeeee on 12 Jun 2015, 12:14 am, edited 1 time in total.

Personally, I am quite uncomfortable when I see people suggest that a particular topic is off limits. I feel like, by responding (one way or another), I am upsetting one particular social faction (or another) within WP. In that regard, I suppose WP is not that much different from the real world. It’s a good thing I learned not to care (about being a member of any faction or social grouping).

In any event, I hope these types of threads continue. As I find them interesting. Likewise, I find the threads of those people who question their diagnosis interesting. Both types of threads provide insight into the psyche of people who frequent WP.

I'm not even sure if I can call myself self diagnosed, since I did in fact go see a psychologist who said that I fit the DSM5, but that she didn't want to diagnose me because
1. I could recognize the expression on a cartoon frog,
2. understood when I said something incorrect based on the reactions of those around me, and
3. She couldn't tell what my IQ is and said that I shouldn't exist because I am both logical and creative.

I did go see her when I was 28, so my age and having been forced to learn how to adapt might have something to do with it. Whether I have a piece of paper that says I am or am not doesn't change that I am definitely not "normal," however I've never had anyone question whether I truly am or not. Most people just say they believe it, and "it makes sense."

I see nothing wrong with self diagnoses, it perfectly describes they believe they have the condition, but haven't gotten an official diagnoses...so its not dishonest or misrepresenting anything really. Also a lot of people who do find themselves 'self-diagnosed' do seem official diagnoses and available treatment options/resources...but it can be hard to find autism specialists especially if you're an adult to get diagnosed, then affording it can be another issue as well. Of course some people might not feel like putting in the effort to get an official diagnoses like if they've already found a way to get by...and don't feel they'd benefit from any services or what not. I mean it can be difficult to get a child a proper diagnoses...let alone an adult.

The only reason I have an official diagnoses is because I used to get blood work and such done at the childrens hospital because of I guess what seems to be a genetic mutation of some kind...at least that is what they've come down to after many years initially there was concern it was some form of muscular dystrophy or that maybe I carried it, but turns out wasn't anything like that. So anyways because of having been a rather regular patient i was able to see a neurologist there, for very minimal cost because one can stay a patient until in their early 20s so for those who have to transition to an adult hospital for treatment its easier rather than having them cut off at 18. So yeah I got lucky with having been an ongoing patient at the childrens hospital if it wasn't for that not sure how I would have gotten a diagnoses. But yeah the diagnoses helped me get on SSI/Disability income and I get a discount bus pass so I don't pay as much for public transit...but to my knowledge I'd have to pay more than I do for public transit for any other mode of transport.

I don't know if this is the correct place to post this.

After I completed a course of Psychotherapy, the psychotherapist said to me "you may be on the autistic spectrum - in particular Aspergers". I was receiving help for a major depression after leaving sixth-form college and failing to adjust to life outside the rigorous routine environment that is school. As soon as the routine of getting up and having my day organised ended, my life was a shambles. Also, around this time, my mother was severely mentally ill with an unpredictable schizophrenia-type disorder that was becoming increasingly unbearable to live with.

I ignored the therapist and continued on with my life, which began to take form again after an unsuccessful attempt at university (I was so anxious I peed in the sink in my room to avoid social interaction on my way to the communal bathroom) and then a subsequently more successful attempt with a private art studio who offered me a rigorous system of learning, within a relaxed environment.
After two years of withdrawal and having to be in a small space with a limited number of people of an array of different ages and backgrounds of the like which I had not experienced before, I began to notice my social skills were subpar. I noticed peoples reactions to me were avoidant, even coarse sometimes. I put this down to lack of practice, I had been out the loop for a long time with my laptop as a magic mirror for communicating with other people with similar interests to me.
I began to become depressed again and go through "bouts", and became sensitive to the increasingly busy and noisy classes with constant babble that distracted me from my work. I began, and still continue, to skip classes for seemingly no reason but then looking intently, I remember feeling stressed in class and exhausted after a particularly social day.
People have always told me that my lack of eye-contact when I speak is unsettling - I now notice this when I talk to people but this is not a concern for me, as I am a visual thinker and need to "see" the conversation, particularly when we're talking about something complex that requires me to go through my memory - which happens to be most conversations.
I try to compensate for this by taking a funny and lighthearted approach to conversation - or what I feel is funny but I don't quite know how this is interpreted. I feel I am good at reading facial expressions and vocal tone quite well, though my friends say sometimes my judgement is off - often more negative than was true.
My social circle is extremely limited and it takes a long time for people to gain my trust, I am very quick to dismiss people on the basis that they have opinions or interests that I strongly disagree with. My best friend often tells me my behaviour is off with people when I felt I was doing what came naturally to me. I am prone to long periods of select interest in a certain topic - for two months I was obsessed with Japanese kanji and made a comfortable little system especially for myself to learn with - and then lose interest totally and move onto something new. Or I will just read and learn about whatever takes my fancy and totally neglect the areas I am meant to be developing in order to get a job and become a self-dependent adult with an income.

I began music lessons a year and a half ago to supplement my art classes, music and art are closely intertwined and singing is something I've always enjoyed doing. After a particularly bad winter where I felt particularly depressed, it became noticable to my teacher that I was not practicing consistantly. She told me through email that she thought I had many of the characteristics of someone with ASD, and sent me a link to a lecture on Caetexia which I still haven't watched, don't fully understand and not sure if I identify with. Her husband and son are both ASD and she is a part of some Autistism society so I can imagine she is very knowledgable on the matter.

Reading through the symptons list of ASD, I do identify with a lot of the symptons but am unsure if enough to warrant a diagnosis. I identify with ADD and ADHD symptons, but that feeling alone doesn't mean anything.
My friend works with heavily mentally disabled children and bluntly told me that "you might have some kind autism or personality disorder, but probably not Aspergers. You might just be an a difficult person, some people can have a lot of the features of the disorder and yet NOT have the disorder"

And then I was reading adverse articles on the matter titled "No you do NOT have Aspergers" and I began to become more and more skeptical as to how much I identified with Aspergers symptoms.
For example, I would say my facial recognition is good. I would say my understanding of social cues is adequate - not totally impaired as someone with a severe case of the disorder. I can empathise with others fairly well, I think.
Perhaps I am just a socially awkward person who is a bit ignorant and obsessive.

Procuring a diagnosis for me would be a difficult, or expensive task that I am unsure would even be worth going through.

But why would they say that if they don't think they just have 'traits' but rather an autism spectrum disorder? for one it would misrepresent what they actually believe, and secondly self diagnoses is easier to say than 'well i think I maybe have autism, but I haven't gone to a specialist to get it diagnosed yet so its not official bla bla bla bla, with extra back story to' when they could just say 'I'm a self diagnosed autistic' which already implies all that information without having to say it all every time. So there is a practical factor to the term self diagnoses vs. 'I think I have some autistic traits, but don't have an official diagnoses, but I think I might have it ect ect.' unless of course the latter more reflects how they actually feel.

That is why it is called a 'self diagnoses' because you're right you cannot officially diagnoses yourself or a family member with a disorder....that is why the self is in there it implies 'non-official' not legally valid, like you're not going to have access to services/help for that condition because of your self diagnoses. That is the whole point only a mental health professional trained in diagnosing autism can officially diagnose self diagnoses directly implies its not official. I mean I could see if people with self diagnoses claimed to have official diagnoses, that pissing people off...but claiming a self diagnoses is not the same thing as saying you have an official diagnoses.

Keep in mind though the experts in mental health conditions that can be mistaking for aspergers, might look more for the other disorders than the autism...like not even consciously but they might dismiss little things that make the autism more likely if they focus in on them having some other disorder and miss some of the autism stuff. Also autism can present differently in individuals....so careful with that, even experts in mental health conditions are not infallible and can fall victim to bias when diagnosing. For instance sometimes schizophrenia can be mistaken for autism, and sometimes autism can be mistaken for schizophrenia.

I speak my mind about self diagnosis, but I certainly don't hate the people who do it. I dislike when somebody diagnoses themself and then expects everyone else to take it the same way as if it came from a doctor. What gives them the idea that their opinion on this matter has any more weight than it would on any other health issue? Doctors go to school a long time to learn to diagnose and treat things, and if it were as simple as an internet test and asking people what they think they have, and they could get an accurate dx that way, why wouldn't they just do that then?

Also, I've seen a few self dx'd people get on a high horse about people doing this or that or a situation being this or that *because of their autism* and they carry on like it's a fact. Many of them also get on the bandwagon about autism speaks and take a commercial about lower functioning autistic children personally when they are an undiagnosed possibly mildly autistic adult. Nobody is going to say their opinion doesn't matter about an issue, but until there is an actual diagnosis, I don't think they can legitimately claim to be autistic. It's nit picky, I know and freely admit. It doesn't bother me that much, except when I'm in a picky mood and then it does.

I was dx'd as an adult after I had been in therapy for an anxiety disorder. She noticed some things and we talked about it and she referred me. It didn't change my life or anything, it simply explained a few things about myself to me and I learned better personal coping mechanisms and also stopped feeling so damn bad about my meltdowns when I found out that even though it SEEMED LIKE I couldn't help it, I was officially reassured that I ACTUALLY couldn't help it.

To me it's sort of like people who jump from one fad to another. I'm not dismissing AS as a fad at all, but it's become prominent in the media and people know about it now and so you have more people who are prone to suggestion who think they have it. It's the same way that in the 80s and early 90s so many kids were dx'd with ADHD. Half the time it was done by a pediatrician after the parent filled out a form or just talked to the doctor. No real investigation was done, and they gave the parents the meds to give the kids cause it was just easier. Of course some didn't go that route. Some parents diagnosed their own kids and gave them natural remedies or took them off sugar, etc and they expected the schools to buy into their dx and back up whatever whatjob crap they were doing to help little Johnny's ADHD when many times it wasn't ADHD at all it was just that Johnny wasn't being taught how to act. Of course there were and are kids with ADHD who were dx'd and helped during that whole cattle drive, and some who were missed or overlooked. And being taught how to act doesn't help ADHD all that much, trust me I have two sons who had it and who had real exams for it, not just a form.

So, after seeing all that crap back then and remembering the big push to put every kid on something and give every kid some kind of dx or diet or whatever, I have to look at the influx of self diagnosed aspies with a jaundiced eye. I mean why claim something you don't know you have? Why not just say "I'm pretty sure I have it", especially if you are an adult and there's not going to be anything really to help you anyway? You can still benefit from behavior techniques that some of us use. You can still chat and hang out, and still really believe you do have it. Nobody is saying you can't believe that. What we are saying is you can't expect everybody else to believe you have it just because you do. There is a lot more to it than anything that someone did researchwise to self diagnose, and doctors get paid that much for a reason. They know a lot of s**t and they went to school a long time, and when they say you have autism they are usually right. You could be right too, but not being a doctor, you don't have much of a track record as a diagnostician, so please understand if we reach for the salt shaker when read "I'm a self diagnosed aspie and I hate how we are discriminated against because my teacher hated me in school and kids were mean and my parents didn't understand," et al.

There are plenty of people here who are self diagnosed who I also believe are on the spectrum. Some others just seem to want to find a reason for whatever problems they are having and this seems like the answer to it to them, and thats ok too. Nobody says you can't really think you have it and live your life as if you knew for a fact you did. Nobody here has a problem with what you believe or how you live your life. We just want the same courtesy about belief extended to us when we say "believe as you will, I'll withold judgment until you see a professional, but you are still welcome here."

Also, one pet peeve I have is when self dx'd people seem to want to speak for the autistic community. Nobody can speak for us, because there are so many of us, with so many different problems and types of problems and different levels of severity on the spectrum, but we don't need a leader to rally us with a battle cry as many newly self dx'd people are prone to doing, and if we were to ever get a wild hair up our asses and collectively decide we needed someone to do that, we would probably choose someone whose diagnosis is certain rather than someone who based it on internet research and personal opinion and a quiz from a psychiatry site for lay people. I'm just sayin.

So, that's my two cents. No hating here at all. Also, not saying all self dx'd folks are like that either. Some of my best friends on here are self dx'd. Some I agree with and some I don't about the dx, but I keep that to myself because I wasn't asked and they aren't ridiculous about it like the ones who I'm talking about in my post. It's also not particular people I'm talking about, I'd be hard pressed to name a name of someone who is self dx'd who does what I've talked about here, so I'm certainly not pointing fingers at certain people, I'm talking about a type of person, a type that I've seen over and over here. Most of those types get real gung ho when they decide they have it and either get mad and leave when nobody responds to their call to action or they become a professional victim because of it. Lots of those go to another forum that I won't name either. So, I'm not talking about anybody in particular, and I'm making sure I state this a couple times in case somebody reads this and gets all paranoid and says I'm bullying them or something, because I honest to God can't think of any particular members like that right now.

Go to any psych forum and you'll see tons of people coming and going and moving between the forums having self dx'd with this or that or the other. They dx family members and even create strategies for dealing with them based on their own uninformed dx's. I've seen them change horses in the middle of the stream after reading and article and deciding that no, they have this other disorder, not the one they originally thought they had. Oh, and Aunt Betty wasn't a psychopath either so it was probably wrong to cut her out of the Christmas gathering, but you can bet she's got some pathology which our ever vigilant poster will discover and dx before the month is out. So, self dx can sometimes be right but it can also be very, very wrong and can cause problems. Before you say it, I'm aware that autism isn't a psych disorder per se, but it's dx'd basically the same way because there are no clinical tests like there are for things stemming from lower down in the body, so it's the same game as a psych dx. Whose to say that someone who thinks he has AS might not have some other disorder that he could benefit from if he's ever seen by an actual doctor and discusses the issues with them? AS doesn't mimic psych disorders but you can bet that at times it can make you act like you have one of many of them, depending on the situation. So, it's not all that easy to dx. Which is why some people here take offense when it's so easily done by others. Especially adults who went through a long dx process just to find out and satisfy curiosity. It's not that easy.

So, TLDR; We don't mind what you believe, just don't get mad when we don't believe it as much as you do. You can still post here. Nobody is showing up at your house to cut your fingers off so you can't post. Well, unless somebody with violent paranoid delusions has self dx'd and takes offense to you and stalks you and hunts you down for a comment you made about his favorite tv show/sports team/color. But that kind of major error could never be made with self diagnosis, right? Not when you take the right online tests.

No harm, no foul, no anger. Just my thoughts about the whole thing. Take it as you will, or ignore it completely. It doesn't matter to me. Just food for thought, or maybe compost, whichever you prefer.

Yeah but the one thing about self-diagnosers is that there are some (I dont know the numbers on how many) that either fake it for attention or say it to make themselves feel special. Its pretty much frowned upon by society and I can see why.

I get the impression that the vast majority of undiagnosed users on this site do indeed take the approach you outline above.

I think that the WP 'diagnosis' options in the personal profile don't help at all either. On the old WP site, I identified myself as Have Aspergers - Undiagnosed, which I wasn't very comfortable with, so have left it blank this time. But I'd feel even more uncomfortable with identifying myself as Neurotypical, which I 'know' is untrue from over half a century's experience of trying to deal with the world.

I have confined myself to the games threads 95% of the time on this site, because whatever your own view may be, the fact is that a number of 'hardliners' in forums like General Autism have from time to time made people in my situation feel pretty unwelcome.

Anyone familiar with the meaning of "patronising"?

It basically means to take a superior, condescending attitude of superiority in a deliberate attempt to belittle others.

And this thread has plenty of examples, as these threads always do.

Wrong Planet was set up by Alex to be an inclusive, rather than an alienating site; it is not just for the formally diagnosed. It is not just for those young enough to have grown up with diagnostic facilities; it is none of these things - and if that is what it is becoming, a patroniser's paradise - it is not for me. The dominant theme in this thread (and all the others like it) saddens me in its patronising insensitivity. So the jihad is back on, is it? We just don't need it here.