So, starting to doubt my self-dx.

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Because it is not a true statement to claim that self diagnosing is never a good idea. I know that's circular, but the statement is hardly controversial.

Complete antipathy to self-diagnosis that some like to espouse on this forum makes it less of a welcoming environment for people who genuinely may need a place like this.

How is it circular?

It is not a true statement to claim that self-diagnosing is never a good idea because it is not a true statement to claim that self-diagnosing is never a good idea.

That's a circular statement because at the time I answered the post I was having issues and couldn't explain anything in any kind of depth.

My longer version is: Sometimes, self-diagnosis is a good thing and leads you to seek professional treatment that will help you. Sometimes it's a bad thing, because it's just feeding an anxiety and/or somatic disorder and just making you worried about what might be happening instead of finding out what will happen.

I would say that someone who self-diagnoses should qualify their statements with that, but I do not think it is bad for them to do it, and being mistaken is not the worst thing in the world. Everyone's mistaken occasionally. Some people here just get overinvolved in the idea that self-dx is bad.

Well I devide between a personal suspicion and getting that checked (but to have too many suspicions is also not always a good idea ) and a self-dx. I've noticed it that some self-dx them and then belief strongly in the self-made diagnoses without an expert opinion validating that. A friend of mine has paranoid schizophrenia but went from expert to expert for YEARS because she beliefed it's autism. She even asked others how "autism" acted and than one psychiatrist in those years (where all the others told her it's schizophrenia) agreed with her. That doesn't make a lot of sence to me. Well others are right about their self-dx, but without an expert opinion there is a high propability that you are not.
Self-dx is something different for me than having a suspicion. In a suspicion you know there is a certain propability but you don't know for sure. But in a self-dx instead you are certain to be right, that's why it's called a "self-dx".

No offense meant but experts are not always right either. Just because you go to an expert it does not mean they will get the right diagnosis. I have been dancing around with experts and ineffective treatments for years often because they fit me with a label based on assumptions they have made (rather than by doing in depth tests) and then end up treating me for symptoms I don't have.

Ie

I always wear my pyjamas during the daytime if I am staying in the house. This is because day wear can irritate me in various ways. My pyjamas are made from comfortable materials that don't drive me nuts if I wear them for long periods of time (for example I can't wear certain wool mixes at all as they are too scratchy and painful to wear, I don't like the seams in items like jeans because they can cut in make my skin sore even if they jeans are well fitting (it is for that reason I have to make sure all the creases are pulled out of my sheets before I sleep on them at night time), clothing labels can drive me insane digging into the back of my neck and so on) but my drs will assumed I am wearing my pyjamas because I am depressed.

I often have light sensitive eyes and keep my curtains drawn on very bright days...again it is assumed it is because I am depressed.

I try to explain I have sensitivities and it is either put down to anxiety, hypochondria, being difficult or overly fussy or depression.

I try to explain that I don't know how to go about making friends or that I don't know how to go about joining in group activities without accidentally pissing the entire group of and either being rejected, bullied, yelled at or ignored and I am told that it is just my lack of confidence and if I just relax it will all come to me naturally. It is just my anxiety....

I give up on experts.

I am also tired of them thinking they can correct everything by handing out pills that give me so many side effects that I become physically ill on them. I am sensitive, people don't believe me as they just think I am being a nuisance, but I AM sensitive (in some ways anyway, oddly in others not so much...Ie I can bruise myself and not really feel it). However, pills with lots of side effects don't help me with anything. And no just because my mood improves or I become more positive it does not mean I will have more social success. Actually that can worsen things as I will just manage to piss people off even more. They think I am weird. They tell me I am weird/odd/strange. It's not my imagination.

Now I won't diagnose myself as definitely having an ASD because I cant be sure but I won't agree with the experts either as I really think my life long social issues etc have more to do with developmental differences I had when i was growing up and are a bit more complicated than regular social anxiety as a result.

Ie when tested by psychologists at age 12 back in the late mid 80s they concluded I had advanced development beyond my years in some ways (intellectual ability, moral development) but that I was behind in others (emotionally immature for my age group and I was also later to physically develop than my peers as well). I was also seen as being too idealistic and over sensitive (arrrghhhhh there is the cue for that 'you are just over sensitive suck it up' crap I get again arrrrgghhhhh). Add to that that I had a twitch that I could not control in my nose (other children would run away from me saying I was pulling faces and adults would believe them and tell me off), I would get upset if my routines were disrupted (ie had a tantrum from hell (in my mothers words) if my scooby do schedule was changed as I tended to watch it at the same time every day), I had a quirky personality and as a young child tended to collect banks forms rather than play with dolls as expected of a 5 year old girl (for example).

Oh come on I had no chance of fitting in socially...I was a walking target for the bullies, and I never grew out of my oddities, even at nearly 40 I have the same damned quirks and tendencies I had as the weird child that got bullied and ostracised all the way through school.

Adults are no more accepting than children, in fact they are less so.

The result? I don't fair well socially as an adult either and all the experts can do is insist that it will all just come to me naturally if I relax and drug myself up with antidepressants like they are some kind of miracle cure when all they do is make me ill and solve nothing.

Oh for gods sake!! !! !! !

PN my exclamation is not aimed at the person I have quoted but is aimed at the experts whom I am so frustrated with.

Well first of all I also already got missdiagnosed, so I know that psychiatrists are not always right. What I did is first inform myself and then went to an autism expert for example to evaluade if I have autism or not, because normal psychiatrists usually don't know much about autism and so are not an expert in the field of autism. So you can't expecct that someone is an expert in sensury issues when they are really not!

When I got dx with autism several years ago, I wasn't sure if the psychiatrist is right and so I traveled 500-600 kilometers to get a second opinion and after that I thought: "I can be sure now". The only doupt was back than if I fullfill enough criteria for an HFA diagnosis or if it's more in the milder range, but I can live with that. That's why my new psychiatrist decided to rediagnose me from HFA to ADD with autistic tendencies. I also know that another psychiatrist would maybe see it differently and diagnose me back again, but then on the other hand you don't have 100% objectivity in psychiatry. There is no blood test you can make to be sure what the patient has. That's the difficulty in that area.

And second of all also the patient can be wrong occationally or sometimes the truth lies somewere in the middle.

Last edited by Raziel on 13 Oct 2013, 4:26 am, edited 1 time in total.

Please excuse any typos I have made, I need to find my glasses.

If experts can be wrong, how reliable is any diagnosis? And how reliable are the tests that they use? What is the margin for error?

I added something in my orignial posting, sorry about that.
You seem to have a negative attitute towarts the healthcare system, because of your own bad experience. But if you really think you have ASD and want get evaluated for it, you should go to an autism expert(!) NOT a normal psychiatrist who are NO experts in sensury issues and usually not trained in that field. At least you should go to someone who is experienced in sensury issues in the first place. At least thats my opinion.

From what you have said ADD/ADHD could fit. There is some overlap in symptoms with AS. I don't know you well enough to tell. Do you fit other diagnostic criteria for that? Distractable, difficultly in focusing, low educational attainment relative to level of intelligence, etc.

An assessment is also probably not "You're not autistic, that's it" but probably "You're not autistic, but this other thing might explain you".

I know I was tested for ADHD during my eval.

It's not really so much I copy things from people I view as succesful, so much as I've always had this sense that I'm somehow inherently empty and superficial, so I invent a persona for myslelf. I know it's unhealthy, but it's what I've done for most of my teenage life. I'm... not 100% on how or why it started; it's one of those things that you do for so long you just forget the reasons. I'm trying not to, but it's hard to remember how to be a genuine person when I've been putting on carefully-constructed masks for so long. In it's most basic form, it is teenage insecurity, I'm not so vain as to deny that.

As I said, I started clinging to the possibility of an autism diagnosis because... honestly? I was a psychology student, and a fairly pretentious one at that. Again, I can own that much. So I diagnosed myself with, gods, I don't even know how many things. I fit some aspects of it, but I don't think enough, largely because I've never actually had all that many social issues, or at least, not in the sense one typically associates with autism. I'm fairly good -from as close to instinct as anything truly is- at talking to people in a shallow, small-talk sort of way and can read people quite well. This isn't my observation- it's things I've been told by friends. I am, to quote, "everyone's therapist" due to being the one folks go to about personal problems (somewhat amusingly, I do actually plan to go into counselling or psychiatric nursing- perhaps they have a point). What problems I do have in that regard comes from more dreaminess than awkardness; I tend to get distracted and switch topics without meaning to, not even because it's to something that interests me, just because the way people talk reflects how they think, and my thought processes are usually fairly disorganized. I confuse people a lot, I try to make sure they're following me and explain things when they aren't, but when I try to do said explaining, even I have no idea how I got onto the subject at hand. I'm pretty all over the place in the "Ooh, a squirell!" sense. I think I would have good social skills if I could just stick to the f*cking subject for once, but... haven't quite mastered that yet.



I don't think I'm depressed as I am now, though I have been in the past and you are, to an extent, correct in thinking that I hate myself. Bit of background information on that- I recently finished sixth form college with some fairly terrible grades (due partially to genuine laziness and partially to the fact that my entire life I have been unable to focus well enough to legitimatley study and gotten by on innate intelligence, which works at school but not so much in higher education) and have been trying to get a job for a little over a month- a hard thing to accomplish when one is an inexperienced 18 year old with no driver's lisince (can't afford the lessons). I do try to stay optimistic about it, but it gets to me sometimes, not least because I was always told that I am 'smart', and that of my siblings, I'd be the one who 'got it right' and went to a good uni and I couldn't. It feels like I've let people down because I'm used to the idea that I'm meant to be perfect. Obviously I can't be, that's not how people work, but so it goes.

Of course, another thing that feeds into my being prone to depression is my tendency to worry over things which don't matter and overthink. I still occasionally catch myself stressing myself out over exam results I got at 11. I dwell on things, I go in circles analysing things which don't need to be analysed; don't even concern me and are far outside of my ability to change.



Again, that one wasn't my observation; my older (a lot older; something like a surrogate parent, our biomom died and god only knows where my dad is these days) sister got given a form to fill out based on childhood asperger's traits; between the ages of 4 and 10, I hit around four out of 30. This was actually one of the things that prompted me to make this post, especially since she was crossing off things I didn't do as a kid which, when I stop to think about it, I activley started doing since I began college. That's the crux of the problem, really- that and I only seem to fit the superficial aspects of autism but not the underlying mental processes. Yet, the way I think is different in such a way that saying I'm entirely an insecure neurotypical who decided to fake aspergers isn't accurate either. And so it goes.



All of the ones you mentioned, definitley. I'm very, very distractible; I go from one thing to another without accomplishing anything, I have the memory of a drunk six year old, I literally can't focus no matter how hard I try; to the point I've ended up daydreaming about cats during an exam. I'm late for everything because the fact that I have to be somewhere completley slips my mind. I learn fast, but forget things almost as quickly. I don't own a single thing I haven't lost. Hell, if you waved a shiny object in front of my face I would try to catch it. I'd probably be far more confident in describing myself as having ADHD than AS, and I was definitley suspected of having it at around the ages of 11 or 12, which kind of... eliminates the issue of "okay but you legit just started doing this after you read about it" that's been eating at me with the aspergers thing.

But at the same time, maybe I should just like. Sort of shrug and say "it is what is" and stop thinking I can work it out. Maybe its Aspergers. Maybe it's ADHD. Maybe I have no f*cking clue. Letting things go never has been a strong point for me, unfortunatley.



Okay, that, I'll admit, would be a good thing. I didn't know that. I thought it was legit just a test for one thing, that's it, end of discussion. I didn't realise I could get tested for multiple things with the same people. Admittedly, this is largely because my past experiences with psychologists have been fairly useless. But maybe I found a good one this time? Maybe. Not getting my hopes up, but crossing my fingers, at least.

Agreed.



I personally keep going back and forth on the topic of self-diagnosis. I think it could be valid. Assuming the person who does the self-diagnosis becomes intimate with the DSM (as, for better or worse, it provides the guidelines on what is what) and evaluates themselves for not only Aspergers/autism, but also other conditions that might apply. This involves, in my opinion, learning enough about this stuff that you establish some level of expertise (again, not only for Aspergers/autism, but also for anxiety, depression, personality disorders, etc.). Without establishing this base level of expertise, how could you self-diagnose?

My opinions only.

Well it really depents, some test for multiple things and some don't. Really depents on the clinic and the country you live in.
But I would still go, you already have the appiontment and even if it's negative then you can be sure that it's really not ASD.



I once read about a psychiatrist who didn't notice that he has depression. It's always different when you have a mental illness yourself, especially because mental illnesses usually change the way you think and feel.

In the UK you cannot see an Autism expert without a referal from your GP. You are also very unlikely to get any help or even be diagnosed if you are adult.

I emailed Sacha Baron Cohen about this once and got a very discouraging response pretty much stating the above. I tried to find that email just now but it was a few years back so I may have deleted it.

Also, I think there is some sort of black listing system in the NHS because whenever I have a health complaint I find that the first 1-2 times I see a new health practitioner they are really nice and supportive and the next time I go they act very dismissively. This happened more than once so I know it's not just an odd coincidence. However, I doubt that I would get to see it even if I paid £50 to get a copy of all my records. I must remember to ask some of my friends who work in hospital if this is true.
Do I sound too paranoid?

I can certainly relate since while waiting 12 months for my diagnosis I gradually convinced myself that I probably was not going to be classified as ASD. I was wrong and they were apparently pretty damn certain I was well and truely on the spectrum.

Im no diagnostician but what you describe sounds much more like BPD or maybe BAP than ASD. Have you considered these as a possible better fit?