Is Self-Diagnosis Valid?

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This isn't logical. You've had a lot of support in adolescence, and you apparently own or manage a business. I do not know what you mean by "impassable resistance" but I've found things pretty impassable for my entire adult life. At best I've repeatedly made minor inroads only to lose it all fairly quickly and end up starting over. The only reason I am not homeless or dead is that my family's supported me when I've crashed and burned.

Those who have gone undiagnosed did not go undiagnosed because they weren't severely affected. I can think of at least three other members on this forum who are pretty severe, who were not diagnosed until they (for whatever reasons) ended up investigating the matter in adulthood. One of them is Australian. I know why I didn't get diagnosed, despite the fact that my mother must have known something was up when I hated to be held or hugged. But I was an easy baby and I taught myself to read. I am a genius, there couldn't be anything "wrong" with me, and when anyone suggested learning disabilities or autism to her, she was extremely hostile to the idea. And both were suggested to her.



How can you possibly know? I worked myself to the point of burnout three times in three years. Is that a weak attitude? Every job I had, every time I attempted college, I pushed myself hard enough to do as well as I could, hit a wall, and couldn't keep it going. I wanted to, but I didn't know why I was so exhausted from the effort, or even what was causing the exhaustion.

Anyway, neither of us knows which of us has the more severe difficulties, although my life outcome has not been nearly as productive or successful as yours appears to be. Your incorrect assumption is that anyone who has severe difficulties must have been identified and diagnosed in childhood, but given the diversity of experiences represented on this forum alone, it is difficult to make this into a credible claim. Perhaps nearly impossible.

I'm not invested in being more severe than anyone, I don't even really know how to tell with most of the people here (including you). I don't really care, as "severity" can be an illusion and someone who may visibly appear more severe than another may actually do better for who knows how many reasons? I mean, I do care about determining how severe my own difficulties are, but I don't care about this "more autistic than thou" crap. It's nonsensical and illogical, and relies on certain things to be true which are demonstrably not true (specifically that autistic severity is always visibly the same, and that anyone who is at a certain severity must obviously be identified and diagnosed as a child).

Also, I don't see the point of comparing something as nebulous as "grief." There are people on this forum who say that things I find utterly incomprehensible to me are worth astounding amounts of grief. Whereas such things are barely even an option in my life at best, and I don't really care. What matters is life outcomes.

This is not at all to disagree with you, only to expand on this point. How would anyone establish which of us was more "severely" affected, anyhow? Is an inability to hold down a job more severe than an inability to maintain a relationship? Does simply possessing a certain ability somehow lessen the severity of other limitations?

Each of us can say what has seemed difficult to us. And that answer is valid. For us. Someone else might have a harder time with something else, and that is just as valid. So I don't think anyone can ever claim they are "more autistic than thou", even if they want to.

For all any of us can know, some of those who complain about what a burden being autistic is actually struggle less than some of us who have made up our minds we are just different, not "defective". There is no objective way to measure how hard anyone struggles. Again, I understand you aren't saying that there is - I'm just pointing out that, even if you had wanted to get into that debate, it would be nothing but an absurd waste of time.

I wish everyone well in their struggles, whatever they are. To the extent I can, I'd be happy to help anyone here overcome those struggles. And I obviously care about identifying my own struggles so I can try to deal with them. But spending even a tenth of a second trying to figure out where I - or anyone else - fall on the scale of "severity" would be a complete waste of time. Who determines what measurements indicate severity? Whose standards are used? Who evaluates where each of us is in relation to those standards? The whole exercise reminds me of the grief I've gotten from some NTs: "X is easy for me, and you're smarter than I am, so you shouldn't have any trouble with it..." (And, if you are reading this and you have ever said anything at all similar to anyone - the equation just does not work that way.)

To answer the OP's topic about self diagnosis being valid....it's certainly is when your shrink agrees with you that you are probably right about the Aspergers. I never thought I'd hear that. She also apologized for sending me for diagnostic testing since the tester is only familiar with children & teens & couldn't see or didn't want to see that I have issues too. I did get a co-morbid DX, so that was better than hearing there''s nothing wrong when I know for a fact that there is. If I had been normal, my parents would not have actively sought out psychological & psychiatric help for me when I was a child & teen.

I didn't get an official DX today, but she did tell me that I am probably right. Said that most of her patients who do research & expect that they have X, do indeed have X. She said she also had a BF who was also married, held a job, & still had Aspergers. So she knows that it's possible as an adult to have issues that weren't recognized when said patient was younger. Hurray, I at least got validated by a professional. I was giving up hope that it would ever happen. Only took me nearly 50 years to figure it out. All I want now is to learn to cope with my boatload of issues that pertain to my life.

Like others have said....I can't tell who is more severely affected by AS. Certainly not by reading posts by individuals. I do think some people with AS can be somewhat successful in life. I know my adopted dad has made a fair amount of money during his lifetime. He most likely has it too, but there's no real point in him seeking an diagnosis at 83. He's been married twice, 2nd marriage lasted well over 50 years. He also held down a job at a grocery store for 25, & has been getting a pension for quite a few years. But he can never give eye contact or talk about anything besides his special interests. How did he do it? I have no clue! Not only has he survived, but managed to do quite well. Has been very successful with his own business, but then again...it's because it's his SI.

Some are obviously going to be more successful, some are going to change jobs a lot & won't be as successful. It most likely depends upon each individual as to how well they do in life.

Can you clarify whether any of this is aimed at me? Because the way you've phrased it is extremely confusing (as in, if you are directing these comments at me, I don't understand what I wrote that prompted them).

I have to admit that when someone says something to me about their perception of my severity, it does intrigue me, because I have had a lot of trouble working out the boundaries my difficulties create in a manner that makes sense in describing "impairment" to me, but I agree with just about everything you said. I realize you said you were expanding on my point, so I assume you are not disagreeing with me (as you said), I would just like some clarification because I am confused.

None of this is aimed at you at all. You simply said something I agree with and wanted to expand upon.

Note that I'm not saying a specific comment to a specific individual about a specific issue that appears to someone to be severe may not be useful. As you said, I find that if "someone says something to me about their perception of my severity", that can sometimes be helpful, if the person offering their thoughts bothers to be detailed enough in their observations to shed new light on a particular area. (I can only really comment about my own experiences, and suggest what I think I might have in common with others.) So, for example, if someone says "You're really a mess, you know", I gain nothing from that, but if they say "You really seem to have a hard time finishing projects without some external motivator", that gives me something to think about.

But when you - quite rightly - refused to get involved in the "who is more autistic" 'contest', it struck me just how futile that whole debate is. So I decided to expand on that thought. I hope this clears up your confusion; if not, please feel free to keep asking until I make it clear enough.

Thank you for clarifying, and yes I agree with all of that.

The idea that someone being able make it into their 20s without being diagnosed means they're automatically very mild is incredibly offensive. People present in drastically different ways, and it is quite difficult for a small enough school that they have minimal special education and no gifted classes to be able to tell the difference between a gifted child and a 2e child.

Personally, people knew I was different for all my life, and I've had struggles for all my life. I had large amounts of speech therapy when I was a kid, of which I have memories of them being completely useless because they wouldn't actually tell me anything that made sense, they'd just keep repeating themselves. I never fit into the classroom well, and I was without questioned viewed as a weirdo.

However, because I was able to do academically well in school, there couldn't be any problems with me, clearly. I would do my work well rather than rushed because I'm a complete perfectionist and it still didn't take much time at all, I'd get the highest grades in the class, how could there be something mentally "wrong" with this student? They are clearly just gifted, and that's why they don't fit in.

And that's how my life went until I made it to junior year of high school. I was assumed to be weird because I was smart. The fact that I'd rather be with my books rather than people was just that I was smart, the fact that I'd avoid the TV that gave me headaches from the high pitched buzzing was just because I wanted to be with my books. Without academic difficulty, social difficulty was viewed to only be "this person doesn't like the same thing as others, therefore she's bullied". Academic achievement was viewed to be the only thing that determined whether there was something different about the person.

When it got to my junior year and I was actually given an academic challenge and expected to interact with people in school, suddenly people noticed the traits that were there all along, because they were causing me academic problems. I ended up with a C in spanish class that year and a teacher who was convinced I didn't understand the language until the final (one-on-one conversation about something read in the language) because I didn't understand how to participate in class talking about things i could care less about. It was no longer being approached as 'learn this fact, and this other fact, and make logical inferences' or 'look for patterns in these things', suddenly speaking and interacting mattered. The fact that I didn't know how to interact with teachers to ask for help or any of that almost got me kicked out of the school for not being good enough.

But as a whole, my autistic traits didn't hurt me academically, because my academic performance was high enough that things like group projects I was just viewed as the smart one who'd do the work and we'll just make her do all of it - and I was just able to do the entire projects on my own, it worked out fine. The other thing is that my parents were incredibly supportive of me, and never expected me to be a normal child, and were willing to do what I needed of them.


I was diagnosed only at age 22 (self-diagnosed between 13 and 15 because a psychologist saw me and thought of Asperger's and mentioned this to my family). Yet, I'm unable to make my own food, unable to clean my own apartment, unable to drive, unable to so much as walk down the street in a city, unable to get a job, unable to do a job with any other people even physically around me if I somehow got one, unable to make friends, unable to understand friendships as others talk about them, and not interested in social interactions as a whole (I want friends, but I don't actually want the social situations, its kinda interesting). I have near daily meltdowns, am stimming most of time I'm not just wrapped up in my weighted blanket (but because I happen to have stims other than rocking and handflapping, this isn't viewed as major by others), and go through phases where I just won't speak even without being in a shutdown. The only difficulty I had getting my diagnosis is finding someone willing to look at a female at all and the cost ($1600 is a lot for just a diagnosis).

I'm not incredibly mildly autistic at all, it's just that a little kid who wants to learn and understand everything is viewed as unable to be disabled, because they're too smart for that.

I overreached myself here - I do think more matters than just life outcomes. What else also matters is the expenditure of effort and energy necessary to achieve those life outcomes. I consider kfisherx to be pretty severe overall, but she's extremely successful in her line of work - and I wouldn't say her difficulties are trivial or automatically milder than mine because I can't even hold a job (and have extreme difficulty even getting hired). For all I know if my life had taken a different course I could have ended up in a similar situation.

My point is that it's dismissive to assume that people have fewer difficulties because they weren't diagnosed as children or because they have a lucrative job or because they have a family or a college degree or got good grades in school. I already went through similar arguments elsewhere and the whole "who has it worse" competition just makes me tired.

I also think every time this topic comes up, people always ask the wrong question: "Is self-diagnosis valid?" That's not a relevant question. It is empirically demonstrable that self-diagnosis is frequently valid, as so many members of this forum were originally self-diagnosed and later received a professional diagnosis. It doesn't have to be all or nothing, and some people can be wrong. Mistakes happen, whether it's a self-diagnosis or a professional diagnosis. There's a thread on the General Discussion forum right now in which someone saw a psychiatrist for two minutes and was told she wasn't autistic:

http://www.wrongplanet.net/postt175901.html

The question that makes me more curious, and seems likely to lead to more interesting discussion and seems less likely to put people on the defensive has more to do with why people choose not to seek diagnoses. I don't mean to challenge them as to why they don't seek a diagnosis instead of self-diagnosing. I mean - there are a lot of really strong reasons people don't want an official diagnosis, whether it relates to their insurance or money other issues. Autistic people tend to have enough trouble, I don't think it is really necessary to expect people to aggravate their own personal situations just so they can tell a forum that they have a psychologist's or neurologist's stamp of approval.

I didn't seek a diagnosis when I first found out that I was probably autistic in the winter of 2007/2008 because after what I had read, I didn't think it was possible for me to even get a diagnosis - no money for one, no access to health care, the idea that it's sometimes hard to get a diagnosis. I felt like I was caught and had no way to get out.

Well, since you're curious...

1: It is much too expensive for me to afford, at all. And, even if I suddenly got my hands on that much money, I'd be much more likely to finally try to catch up - well, at least get closer to catching up - on the list of fountain pens I desperately want to own.

2: It is nearly impossible to find an expert in my area who understands anything about diagnosing autism in adults. They all seem used to children and have little grasp of how over time we develop coping strategies that make our underlying issues less obvious. I did explore the possibility - and the prestigious expert someone recommended to me replied in such a way that he clearly did not even understand it was possible to remain undiagnosed as an adult - even though I'd explicitly pointed out I grew up at a time when autism was not well understood - and told me "autism isn't something you develop as an adult" (emphasis mine). I wasn't exactly encouraged to think paying him the $1,500 he wanted to determine what my issue was (having already clearly made up his mind it could not be autism) would be well spent.

3: I'm over fifty years old. I have seen nothing to suggest that at this time in my life, a formal diagnosis would do much more than confirm what I've already figured out. I actively do not wish to be put on drugs, no matter what benefits they might be supposed to provide: I'm a writer, and my mind is my primary tool. Drugs that might affect the workings of that tool are anathema to me.

4: The probability anyone I saw would not understand how to diagnose autism in an adult, and the fact that a formal diagnosis would offer me little or no benefit, give me even less reason to wish to spend even a small amount of money I could instead use to get pens and inks which I could enjoy using. If someone wants me to spend money on something other than a fountain pen, or books, or a few other things that interest me, they've first got to convince me there's a very good reason. So far, the advocates of diagnosis haven't done that.

I see that while this thread started off asking about medical conditions, it has veered (inevitably, one supposes, given the nature of the website) into a discussion of self-diagnosis of Asperger's Syndrome.

I see further that some of our members don't seem to be aware of the history of the diagnosis (as usual).

Specifically, b9, I for one could not have been diagnosed with anything at the age of two, even had the United States as all-encompassing a health-care service as modern-day Australia, because I was two years old in 1965. The DSM-II was still two years away from initial publication at that time; by the standards of the original DSM, since I was not profoundly autistic, I was fine.

DSM-IV, the first edition to include Asperger's Syndrome, was not published until 1994, by which time I was 31 years old, discharged from the Air Force for "psychological condition unsuited to military service" but specified no further because they didn't have a name for it, and heading toward a rocky ending to my first marriage. I didn't hear of AS until eight years after that, when one of the news-magazines (I think it was Newsweek, but am not positive) ran an article on what they referred to as "Geek Syndrome" - an article which caused my elder sister to put the magazine down, look at my mother, and say, "So that's what's wrong with Jon!"

Since then, many people, including my second wife, have verified this. I have not had a professional diagnosis because I have never made enough money to pay a psychiatrist, and since my discharge I have never worked for any company that included psychiatric care in their health-care plan (and if they did, I'd probably find my case rejected for payment by the insurance company, as it would be called a "pre-existing condition" - the same reason the dental insurance was useless to me).

Trust me, everyone knew there was "something wrong" when I was young - but nobody knew what. Doesn't mean there wasn't anything; I didn't suddenly "develop" AS when I hit 40. It just means that the diagnosis that fits my condition best didn't exist until sixteen years ago, and I am considerably older than 16.

What I have tried to find out but can't seem to locate are the diagnostic criteria for autism in the DSM-II. I would love to see those.

TheWanderer:

Thanks.

Okay, found some info here. Turns out that even had a diagnosis been made, I wouldn't have been diagnosed with autism, but rather (as my younger sister was) with childhood-onset schizophrenia. Infantile Autism wasn't a diagnosis until the DSM-III, in 1980.

i suppose i have to reply considering the effort you put into your post (judging by post length primarily).

that is not logical either. one of the reasons i had so much support was that i was clearly seen to need it. i could not reciprocate at all, and it was not possible for me to pay attention to people. my mind was impregnable, and that was why "i" came to the attention of my parents and teachers etc.

i understand that in many places in the world, there is no possibility of free psychiatric services, and also that there are many places in the world where people with quite easily noticeable disabilities can seemingly "fly" under the radar.

i did not have the ability to learn anything if i did not listen to other people (that is what they thought (i was learning very much while they thought what they were thinking about me)).

in my socioeconomic environment, there was no chance that i would not quickly be set aside for further examination as a child, but i must believe that there are places in the world that i could have survived in when i was a child without much professional stewardship over my early life.

i can not imagine it.



i manage and own my businesses.

so what? my "game" of financial life is a bit like a video game that i design, and then attempt to play well.
if i design what i play, i can more often than not play it well.
instead of electronic "points" or (whatever the virtual currency of the game is), i get "dollars" that are valid in reality.

i do not see how that relates to the phrase of mine you are quoting.
_____________________________


if you can identify with the phrase "impassable resistance" sufficiently to draw an abstract connection to it, then how can you claim that you do not know what it means?


i can not respond to that because i do not know what to say.
as for the rest? what can i say?
it is too detailed and convoluted for me to follow easily, and even if i finally incorporated it into my sensorium, i would have no corresponding processed output to report.

sorry, but i have responded, and that is all i was (possibly) obliged to do.

Yeah, I don't think I would have been diagnosed under the DSM-II. It's debatable under the DSM-III (I technically fit the criteria, but spoke early, so it depends on the biases involved for anyone who would - I'd say it would have been unlikely).



I tend toward longer posts/explanations than are strictly necessary at times.

that is not logical either. one of the reasons i had so much support was that i was clearly seen to need it. i could not reciprocate at all, and it was not possible for me to pay attention to people. my mind was impregnable, and that was why "i" came to the attention of my parents and teachers etc.[/quote]

My point being that you cannot possibly deduce how severely other people are affected by their autism on the basis of how old people are when they get diagnosed - nor does being diagnosed as an adult mean getting into their 20s without difficulties.



And yet I know of at least one other person who has pretty severe autism (would not be described as LFA, but how she describes her childhood is pretty atypical) who is also Australian who was not quickly set aside for further examination. Sometimes the system works, and sometimes it does not. Using one's own life course as a yardstick for possible outcomes cannot possibly cover the full diversity of experiences.

Also, the point of having support is that it is entirely probable that this support actually improved your adult life outcomes. People who may technically be milder but who had to grow up with no assistance may not have effective coping mechanisms or strategies, meaning their difficulties as adults could be more severe than yours, even if your difficulties as a child were more severe than theirs.



Well, perhaps you could explain what your definition of "impassable difficulties" is.

It's relevant because you are saying that all these people must be milder and have fewer difficulties than you, and yet something like 80-90% of autistic adults are unemployed. There must be some reason that you are able to handle your own business while someone like me cannot get a job or hold one down on the rare occasions I can get hired, and I do not think you can explain that as a matter of "weak character" as opposed to "weak constitution."



I do not know what you mean by the phrase. I picked a meaning that made sense to me, but I am not positive that this meaning - an inability to function as an adult (hold a job, live independently, etc) - is what you intended, since you seem to be capable of some of these things, whereas many others are not.



It's fine, it was melodramatic and I was frustrated. I do not know what makes it too convoluted to follow, or I would try to minimize it. That is, beyond my tendency to overwrite.



That's fine, as I said I tend to overexplain. I am not sure how to summarize what I am trying to say here, or I'd do that. I already tried several times and couldn't manage it.

it was wired magazine 9.12 from 2001

http://www.wired.com/wired/archive/9.12 ... rs_pr.html


same article made me realize what nobody could explain… but what i knew since i was 5: they were very different than me….

i got officially Dx’ed and certified in 2005 @ 43 years of age.



http://www.newscientist.com/article/dn2 ... lands.html

more is explained in a recent study involving my home town in the netherlands, where i was born and lived until 1980, before i moved to denmark...

i have been counseled about my attitude to "self diagnosis", and i realize more things now.

what i realize is that is that if was born somewhere like pakistan, then i certainly would not have received help.
what would have i done?
i would have survived i suppose by having to learn how to "fake it"

i would have tried everything to continue to survive.

maybe the people who i was rude to are living the nightmare i just decribed (because i can newly understand it), and if they are, i have to very much apologize for everything i said in this thread.

someone helped me to see i was wrong. and i admit it.