Self DX vs. real DX -a new perspective for me!

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After quite a bit of debate, trying to understand both sides of the issue, and spending some time today reading some other posts from some of you who feel that self diagnosis equates to not really having AS, my eyes have slowly been opening to some things I hadn't considered before, because I never really saw them until now.

I think I'm finally beginning to understand why so many of you feel the way you do. I think that's happening because while I've spent the past few years living only with my own conviction that I have AS, I've also never really been satisfied with only my own self-DX. Being only self diagnosed so far, I have only seen things from that point of view. The closer I get to pushing for a doctor's DX though, the more I realize I see more value in that DX than most who have also self DX'd, yet don't see the value in pushing further for a "real" diagnosis.

I have seen both sides, or at least tried to, but some posts I've just recently read, from some who seemed to look down on self-DX'ing, posts to newer users wondering if they really have AS, have revealed to me things about some of you I hadn't realized.

I'm beginning to understand better why you have the reactions you do to self diagnosed Aspies.

Case in point (taken from another thread):

Now, I have to first apologize that I honestly don't remember if lilolme and I ever "got into it" on this topic, because I totally suck at remembering names until I've been on a forum for a while. (Sorry lilolme!).

Whether or not we did, and whether or not we agreed on anything I forget, but the point is, the above post actually opened my eyes and mind quite a bit. She does admit here that she actually did pretty much self-DX but was later convinced she ought to "quit self-DXing," and get a firm professional opinion. Well, that's pretty much where I'm at right now, only I'm the one telling myself to quit fooling around and get it done.

Why?

Because for me, it will open doors, and get the support and help my entire family so desperately needs right now. The fact is, if I really do have AS (or even if I don't, and it turns out to be something else), it is a HUGE problem for me, AND my family. In thirty five years of working, I've never been able to hold a job longer than three years, and usually not even that long. I've probably had more than thirty-five total jobs in that thirty five years.

Also, looking back, I've advised others with the same question ("Do you think I have Asperger's?"), with pretty much the same answer she gave above. "Get some books. Do a lot of reading. If you still think you have it, get to a doctor, tell them you think you have it, and why, and GET EVALUATED."

I've never once told anyone, "Yeah I think you have it." I think that would be irresponsible of me.

Okay, I've probably researched AS far longer than most do before getting a DX, but that's only because I believed my son had it, not me. It took me seven years to begin suspecting I might have it too, and a further two years before I made up my mind, "Yup! That is most definitely ME!"

But from reading all of your posts, both on threads I've replied to, and others to which I have not replied, I've reached some conclusions that didn't exactly surprise me, and were somewhat unexpected. To break the conclusions down:

1) Self DX based on a few, or even several articles = I'm not really convinced, and think you need to do a lot more research and self examination, then get yourself evaluated if you can.

2) Self DX based on years of research and self examination = You could very well be right, and you ought, if you can, get yourself fully evaluated.

3) Self DX'd and fully satisfied with your life (no problems created by your traits) = Uh... I highly doubt you would even get a true DX if you tried, because what ever is going on with you doesn't amount to a true disability.

4) Full evaluation and DX by a qualified professional = Yeah. You most probably do have it, and it must interfere with your life enough to be a disability, else you probably would not have been DX'd ("Probably" used only because I'm aware enough to know that incorrect DX's can and sometimes do happen.)

It's that third situation on the list that reveals a "new awareness" for me. I have seen some posts from some self DX'd individuals, claiming that a professional DX is nothing but a label. That position, after some careful thought, is somewhat suspect to me now, because if your supposed Asperger's isn't causing you much of a problem, it's pretty hard to believe it's really Asperger's. Maybe it was in your past, and AS explains a lot of that, but if it isn't causing you a problem now, I have to wonder why you're here.

Most of us are here, I think, because we need the help and support of others. Because AS actually does still cause problems for us. Maybe you don't "need" a DX, because it isn't really Aspgerger's anyway. AS traits are so broad it actually IS pretty easy to identify with many of them even if you don't have AS. But AS is a disability. It is something you can learn to live with, yes, but it requires tremendous ongoing effort to affect those adaptations, even after years of practice. If you find it easy to cope, and succeed in life, I have a hard time believing you have true Asperger's, especially when there is no diagnosis to back up the claim, and most especially if you aren't even willing to go through the process of getting a diagnosis. Perhaps the reality is, you don't need one, because you don't really have Asperger's.

I'm using words like "probably," and "perhaps" purposefully, because I was brought up to avoid being judgmental at all costs. That's just me.

I wouldn't want anyone to call me on not considering the cost of evaluation, so here's my take on that:

Of course we can't all afford to get evaluated, but we can all surely afford to get our hands on some books and read. Do some research man! If you believe AS is enough of a problem in your life to go seeking support, why not seek the best support you can possibly get hold of. Your own self-education! Learn everything you can about it! Try getting a DX anyway. If one doctor or government agent says "no," don't accept that! Go see another, and another, until someone listens. In the end, I really feel that if you aren't willing to turn over every single stone, bother every human being you meet until you get some answers, maybe your Aspeger's, if it even exists, is so borderline, it doesn't bother you enough to do what needs to be done.

If you CAN afford it, and have the insurance to cover an evaluation, and you still aren't doing anything about it, well then, I'm just not buying that it really IS Asperger's at all. Asperger's, as much of a blessing it can be in many ways, overall, REALLY SUCKS!

Here are the wonders it has done for me:

• Excellent math skills (though it took many years to discover this because none of my public school teacher had a clue how to teach me. I had to find my own books and learn on my own, then I went from D's and C's to straight A's!)
  
• Excellent abstract conceptual skills in relation to physics, engineering, geometry and music.
  
• Crappy interpersonal skills. I've never had more than one (two for a short period) friend at a time, and at the moment, none really, other than my wife for the past fourteen years.
  
• Spent most of my life constantly misunderstanding and being misunderstood by others.
  
• Most jobs never lasted more than a few months, none ever lasted more than three years.
  
• Had insurance benefits at only two jobs ever, and for less than two years each.
  
• Never been good at managing finances, so never been able to hang onto or save money, even though I've studied how, and understand how.
  
• Been fired from numerous jobs, mainly for health reasons, brought on by the stress of constantly "adapting and coping" to appear good at them, then burning out at every one of them.
  
• Tried "positive thinking" techniques, and they actually worked as far as my attitude, but was never able to translate them to real, visible and measurable changes in my life (e.g. promotions, pay raises, or actually getting a business off the ground - and I'm not talking about trying this for a few months. I started this ten years ago, and I still do it, but no changes other than attitude)
  
• Studied influence techniques and philosophies in conjunction with sales techniques and strategies during the same period. Three years as an appliance salesman on commission, never made enough to break above base pay. In three years, only once was able to tell a customer was ready to purchase when she slammed a checkbook on the counter and sternly asked, "How much?"

While growing up:

• Was sent to the office several times, and never knew why.
  
• Couldn't learn cursive writing without a major struggle, not because I couldn't do it, but because no one could explain to me why it was so damned important. None of the reasons given made any sense to me.
  
• Overall, found it impossible to learn things I wasn't interested in. If a subject didn't captivate me automatically, I could NOT focus on it.
  
• Spent my first five years in school getting the living **** beat out of me by bullies, because I was a "weirdo, queer, idiot, moron" (pick your insult - they used them all).
  
• Fought my parents, and teachers on an almost daily basis not to have to go to school, partly because of the bullying, but mainly because I believed that being forced to leave home and spend the day there was "wrong." Kicked out two of my teacher's teeth trying to get sent home.
  
• Spent most of my youth being told I was not stupid, just lazy, and stubborn, when I really didn't know why I couldn't to a lot of my school work, I just knew I couldn't. Led to a lot of nasty fights with my parents, and unproductive meetings with clueless school counselors (remember I'm forty-nine, so we're talking about the sixties and seventies).
  
• Heard repeatedly, "We know you can do it, because you've done it before," from both clueless parents, and teachers, year after year, after year. Not a one of them understood that just because I could manage to perform some task one minute, didn't mean I could do it the next - I never knew when I'd be able to, or why.
  
• Constantly being told I was lying when I said I couldn't do something at any given moment, when I knew in my heart of hearts, I was NOT lying, and really did NOT know why I could or could not do whatever it was, whenever.

I could go on, but you get the picture.

That's the kind of thing I STILL deal with, though some things I am better at than I used to be, but none of them as well as people my own age normally can. And this is, of course, only a VERY short list of representative things that AS has so generously blessed me with.

So, yeah, when someone pops off about how "wonderful" their life is with Asperger's, it's kind of hard for me to believe they have any idea what they are talking about.

I don't like being negative about AS. I hate calling it a disability, and I'm trying to teach my own kids, who ARE DX'd, not to think of it that way, but to focus on their strengths. My kids have many wonderful strengths and traits, and so do I, but they come at a steep price I must say.

I do believe that we have to be realistic about it. AS DOES SUCK! It's NOT a picnic. It's not fun being clueless while the rest of the world "gets" something you don't. But it's even worse trying to explain things I DO understand to THEM. Now that's a stinking nightmare and a half!

Anyway, I wanted some of you to know that I do now, "get" where you are coming from.

Though I would not choose to use "self DX = fake aspie" necessarily, I do now "get it."

Thanks for reading (if you made it this far).

P.S. Please, those of you who are self DX'd and happy with it, please don't start jumping all over me about this. This isn't about me "changing sides" or anything like that. It was, is, and always has been, for me, an exploration in understanding and self realization. I understand both sides now, but more than anything I now truly understand why some feel so strongly against self DX'ing. I already understood the other side, so this is something new for me.

The thing is, AS DXs are good for people who have problems working. They have impairments which make it difficult or stressful to work, or conversely, difficulties that make the human work environs stressful. The majority of these people may get the DX, because they need the financial help to live. I fall into this category.

However there are a lot of people who can support themselves, who dont need the fnancial spport, but they have impairments in their relationships. this has a significant impact on a persons life than being unable to work.

these people are less likely to seek a diagnosis, as, they dont need the financial help. Many aspies can do well at work, perhaps better than NTs in some ways.

My father is 63 and has always been able to work. He could probably get a AS or PDD-NOS dx but what would be the point? He is retired now anyway. His problems he has had are not related to work, unlike mine, he just needed to find a certain type of work.

I'm going to seek a formal diagnosis, partly for this reason. I've managed to stay employed so far, with only a few different jobs, however two of those jobs caused me to have breakdowns, and a near breakdown after one of the others.

I've been struggling in my current job, but now I feel like I have a clear idea why. Whether I should stay in this job or seek something "more suitable" is a question that remains. I'm also not sure if there's any sort of financial help available in Australia to adults with AS. Even if there isn't, it's already helping me understand why I struggle at work, and how to potentially ameliorate some of those problems.

Exactly, for me it's about being functional and maintaining relationships at the same time. I have to use a facade to maintain relationships and I can do that, it's just at the cost of the rest of my life falling apart. When I am focused on my goals and doing well otherwise, I have NO friends, don't really talk to anyone, have zero interest in people. Just focusing enough to get things done causes me to "switch over" or something, it brings out all of the AS traits. I don't know how anyone pulls this off. I tried diving in head first thinking that pretending to be normal would make me normal and failed miserably.
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Very difficult to find a balance, and negotiate how much involvement you want with the real world. Also very hard to know if you're making the right decisions. Sometimes I look back and am truly horrified by my own judgement.

Anyway, for many women the traits are less severe(not to mention how difficult it can be for an adult women to get a DX anyway. I'm sure if I waited until I have a nervous breakdown they'd gladly give me one but I really don't need to do that). I was more of a classic Aspie as a child but I don't thinking learning coping skills means I'm suffering less. I choose to sound positive most of the time because I'm too old to whine about my problems, but my life is a WRECK, and it's definitely all my fault. The mask that I use is VERY draining and TBH I don't plan on using it forever. If that means the closest thing that's left to the real me comes out, so be it.

Sure, but that qualifies in my mind as an impairment. If it affects your quality of life, it's a disability. When I use the term, I don't restrict it's meaning to he legal sense of the word. If it causes you difficulty, it's worth getting a DX that will qualify you for further treatment.

I realize if you can perform a fairly good job with decent pay, and manage to keep it long enough to make a career out it, you probably wouldn't qualify for as many benefits (be they from an insurance company or the government as would someone for whom AS prevents them from doing the same. You may very well still have serious problems with forging close relationships, but as someone who cannot even manage to keep a job long enough to do what you've managed it's difficult to sympathize with someone who has options that we don't.

This is about understanding, and yes, even beginning to empathize with those who equate no DX to being a fake. I would not choose to use the term, but I do at least understand it now.

I don't think you (if you are one who manages to hold a decent job or career), are necessarily a "fake" just because you don't seek a DX. You may very well have AS, but you also have options the rest of us do not have. With a good job, you could choose to be evaluated, and use the DX to get treatment for interpersonal problems. But you choose not to. That raises what I now see as understandable questions in the minds of others for whom AS is a much more serious problem.

If your relationship troubles are serious, why not seek treatment? Why choose to do nothing more than what you are doing, which is admittedly not "nothing," but not as much as you could do?

I'm just saying I think I understand now why others may not take you seriously, but I'm not saying it's necessarily fair not to either. We don't know what your personal circumstances are. For all we know, getting full blown treatment might mean a choice between giving up your home or just learning on your own to deal with it.

It's so easy to assume we know more than we do, especially if we really DO have AS. I think one of the most interesting things that I've learned recently is that we seem to go through similar stages during the process of learning about our AS.

1) We come to understand there is an "AS world," and an "NT world."
2) We come to understand why NT's have never understood us.
3) We come to understand why we have never really understood NT's
4) We come to realize there are little havens on the Internet where Aspies gather to share their experiences.
5) We come to forums like WP thinking we're going to find a safe haven where everyone "gets" who we are.
6) We discover that understanding other Aspies, and them understanding us, is even trickier than dealing with NT's, because we're far different from each other than we realized.
7) Seven is a crap shoot, where we either find a safe haven among a few on the forum who we manage to get along quite nicely with, or blindly just continue to "be who we are, consequences be damned," or, disillusioned, end up trashing the whole idea and leaving the forum altogether, or, if we're really fortunate, become well liked by everyone on the forum and live happily ever after. I've never seen that last one happen.

I came here already having been through steps 1 through 5 on other forums, and already having decided which option in number 7 I would choose.

I try to at least understand everyone. We're all different, yet we share a lot of traits, which when combined with those differences, sometimes make for some pretty volatile powder kegs. Misunderstandings light the fuses to those kegs. Lighting fuses is bound to happen. In trying to understand others, sometimes the fuses are lit. All I care about once that happens is gaining the understanding I came for before the kegs blow. In my mind, seeking that understanding may cause a little friction, thus lighting a fuse or two. Understanding though, if I can get it before the keg blows, is like water on the fuse.

At least that's the theory. Sometimes the keg blows anyway, and it pisses me off how often the damned thing is filled with egg. 'Cause it always seems to get on my face!

Anyway, I see your point too. Thanks for bringing it up. Now I'm all confused again. Thanks. Thanks a lot.

I'm kidding.

Thanks for the response.

I think that was zen_mistress's point. The social impairment is a disability, but there is no support for it. Getting a diagnosis doesn't help in that regard because there's simply no social support available - at least not at this point in time. In theory a diagnosis is a great idea, because it supposedly gets you help and support for your disability, but in reality there is not the help available for social impairment. It's not recognised as a tangible disability.

That (the bold part) seems to be a common thought, but I don't see how it neccesarily follows. A person can think it's just a label, but still have problems.

I guess it depends on how you interpret the phrase "it's only a label":

a) "It's the sum of various benefits and a label, but in my case there is nothing that needs benefitting, so therefore it's only a label."

b) "It's a tag made up by doctors for something, and would result in little (or negative) practical benefit (because services suck, don't exist, or aren't ones that would be helpful), and so would be nothing more than a label."

I think it's unwarranted to assume that "it's just a label" means "no problems." It can be a belief that a dx may be a lot of trouble for insufficient benefit. And, maybe more to the point, the benefits of a diagnosis will vary depending on a one's circumstances. I.e.:

If someone needs to get on SSI or end up homeless, then a dx will be helpful. Or, if you're in school/college or at work and need accomodations, it could help. OTOH, if, say, you own your own 1-man business, which is doing well, maybe there's no benefit to be had. Or, you have an amazing spouse who doubles as a caregiver. Or (in my case), you're on disability for other reasons, and that covers your needs well enough. Or, you're a stay-at-home parent, and that's working out. Or, you are worried that child-protective-services might use a dx in a stupid way to take your kids away (which has happened).

You can look at the major autism organization's expenditures to see how much of a priority adults are. There are some useful things out there, but it's not like services/benefits are so comprehensive that every adult on the spectrum has an obvious lot to gain if only they were dx'ed.

As far as people being upbeat and doing well, some of the most upbeat people who sound to be doing well are diagnosed, i.e. glider18, gbollard, etc. Things just seem IMO to depend a lot on people's individual situations. One person's impairments might be mild, but their circumstances are such that the results are not-mild-at-all and making them miserable. And someone else might be severely impaired, but happy and well.

At first, I was skeptical of people who were married, let alone had kids -- but I've seen/heard so many that are dx'ed (and heard what they say/describe) that I don't think it's a contradiction anymore. I had to realize I was trying to make my difficulties and situation essential to ASC's, when they aren't.

I think it's tricky territory because the vast majority have suffered (and been misunderstood and isolated about it), so people are understandably touchy about feeling invalidated -- either by people not having to seem to have suffered 'enough,' or by the "self-fx = fake" charge. Hopefully, more energy will eventually be spent on trying to make the world more hospitable, rather than on these internal battles.

S'what I keep hearing, but not so sure I necessarily agree. My wife is now strongly suspecting she has AS (her brother was diagnosed long ago, and we now think if we do both have it, it may explain why we were attracted to each other in the first place). She doesn't often display what you might consider to be "classic" traits, in fact some are oddly different from my own, and my DX'd sons. For example, she thinks of herself as "hyper" empathic. I know what she means, but I don't totally agree with her. Her empathy, I think, is a lot more self motivated than she used to be willing to admit. She does seem to "feel what others feel" more than most, but she also has this sometimes unnerving drive to "make others happy." But when I asked her once, "Why do you need to make other people happy," her answer was, "Because it gives me peace!" So her motivation was really about getting peace for herself. Another thing she thought was different was her constant need for change. She couldn't stand staying at home on weekends, and didn't like planning anything ahead. Pretty "non-Aspie," if you don't know her well. I think she likes spontaneity, not for spontaneity's sake, but because for her, that IS her constant. She's moved so many times in her life, moving and change is the norm for her. Staying in one place drives her nuts, because for her, that isn't "normal."

Those are a couple of possibly unusual examples, but I do wonder if the traits in women aren't less severe, but just better hidden or disguised.

I don't think of them as battles. Well, okay maybe sometimes I do, and have to admit later it was wrong. I'm thinking of it more now as just a struggle to understand each other. As with any struggle, sometimes people get hurt. Sucks, but it's true.

I just know I'm kind of glad a point of view I didn't agree with at all just two days ago, now seems a lot more understandable to me. It's not that either side of the issue is right or wrong. Both sides are right to some extent. Maybe not always, but at least most of the time.

I couldn't see it at all until I realized I may be about to be in the same boat fairly soon with everyone I disagreed with a couple of days ago. There's that "theory of mind" crap again! I couldn't see it until it was ME!

Both. Less severe because women disguise them and are often impacted less by AS overall. But seriously, if I truly dropped all of the disguises, I'd be hand flapping and running around on my toes in public. So...the traits are there. IDK what makes it easier for some to disguise than others, just depends on the individual i guess.

I'm really somewhere in the middle but still very borderline IMO, though possibly not as borderline as I think I am because I can't imagine having a successful career and family, being a parent, balancing all of that and I'm almost 26. Maybe someday it'll happen but I feel like if it were going to I'd already be less of headcase.

Hah! Yes, and you guys know how to put your "jerk" down better than most of us!

As a female Dx'ed with AS as an adult, I'm curious to know upon what evidence you base these claims?

Upon 80% of everything I've read about women and AS. I wasn't really sure if I fully identified with AS until I read about how it affects woman and talked to many women with the disorder. They are just like me and many pass for NT. Tony Atwood is doing a lot of research on this. I guess it all fairly new research and there are still many women who present traits juts like men, these are just the women that get diagnosed sooner.

What treatment? Anyone could go to a psychologist or take a social skills class without a diagnosis. Anyone could get counselling with relationships (though most therapists struggle to understand people with AS anyway . Why get a DX if you already know you struggle with social skills and relationships. Unless you were enrolling in some class which required a DX on entry, there would be no need,unless you wanted one for your own reasons.

I don't think there are any studies released yet, but I do think it's a reasonable theory. Personally, I think it probably is frequently more difficult to "see" it in women than in men because most of you all are much better than we are at hiding and masking certain emotions, especially anger, which is one of the most telling AS indicators (as opposed to an actual trait) that makes the AS easier to "see." I don't think it's necessarily that the traits aren't there or as severe, but that they are harder to see in most cases. Speculation based on intuition on my part.

Thx, yes that was my point, I hope people realise this in future when holding people into question who dont have a DX.