The Stigma of Self-Diagnosis

[Tarragon]

If someone says they are on the spectrum I believe them whether they have a diagnosis or not. I do have an official diagnosis of Autism 299.00. I think I would have been diagnosed as an aspie except my evaluator was being foresighted and used the new proposed DSM V which eliminates aspergers.

I'm curious what you've been diagnosed as having using the dsm 5? I'm going to push for a diagnosis for myself this year using current dsm, as I want to show the world I'm an Aspie! what will aspies become next year then?

 

[Soup]

Autistic. Same with people who were formerly diagnosed with PDD-NOS. ALL NOS-type diagnoses in the DSM 4 TR will be eliminated since they are vague & do not describe anything specific (I agree with that one: it is tantamount to saying; "He's weird all right, BUT not in the identical way as these other weirdos.") Asperger's gets eliminated (I'll still see myself as an Aspie much like those initially described by Asperger). WE'll all be on the same spectrum. This is as dangerous & as slippery as banana peels on a skating rink. Lumping us in with people who are, in many cases, completely non-functional, non verbal & perpetually banging their heads to where they must constantly wear a hockey helmet makes no sense. It will further stigmatize us Aspies & render us definitely sick due to some unknown & not scientifically understood 'brain insult' & not simply neurologically different to NTs.

Years ago, I knew this weird NT couple: the 2 were fraternal twins (!!!) & they looked as alike as 2 eggs in a carton. They had 3 kids together (YES, this guy & his sister were screwing). All 3 were Auties: the eldest was severely. He was 6 yet couldn't speak at all & made crude sounds & a tea-kettle screech sound sometimes at random. He had to wear a helmet because he'd drop down & begin banging his forehead against the ground- be it soft grass or concrete. He would suddenly bolt away at high speed (those legs were working at optimal levels!). He never communicated in any way with anyone. Not even his parents: no eye contact ever, no attempts at getting them to give him something. He was literally in his own world BUT lost even there. The younger sister (age 4) was more communicative, had some words, did like arranging things in order & needed a steady routine. She would flap her hands on occasion but never anything like her brother's severe detachment. The baby was the most disturbing one to observe (a little girl). She was about 8 months old. Usually at this age, they're squirmy rolling, sitting, grasping, gurgling active wigglers (with some variations in degree & intensity). The baby was not paralysed but would lie motionless in her crib & stare off expressionlessly at some unseen object. She never cried when wet, soiled or hungry. When I'd hold her, her limbs would all hang there straight down like a doll's. She would hold her own head up BUT she'd stare right past you. If given a bottle, she drank. If given baby food, she ate. She was much like an expressionless battery operated Matel baby doll with a defective sound mechanism.

The 2 kids were so severely affected that they had to sleep in the parents' room & the door had to be locked for the night because the boy would just suddenly leap up & run with no regard for traffic or other dangers. I babysat for the family once when I was about 15. They never bothered to even tell me that there was something wrong with the baby other than severe Autism (!!!). She was suffering from Pneumonia & the little girl was sick as well. the baby would have bouts of apnea wherein she'd cease to breathe for a few seconds then gasp for air. Fearing the spectre of SIDS, I called the parents, made them come home & take her to the hospital (I remained with the other 2).

I can see the sense in having 2 spectrums: the Autism one & an Asperger's one but lumping us together with people so severely impaired is as ridiculous as lumping someone born with a condition that makes him walk with a slight limp together with someone born with no legs at all.

 

[Spinning Compass]

The only place where I've encountered any kind of "bias" or "stigma" about being self-diagnosed is on forums like this, believe it or not. Yes, I am somewhat self-diagnosed. As a child I was given the label "perceptually handicapped" and put into behavior modification and special ed classes and I get entirely what Soup said earlier about Aspergers-Autistic-Retarded-Nuts. So I don't talk about my past much--as far as the world is concerned I have no history prior to graduating from high school. I've put that part of my life behind me.

I have never had any one ask me whether I was formally diagnosed or self-diagnosed. I have had people tell me that there is no way I could be on the spectrum. In which case I change the subject. No sense talking about it.

I would like someday to have a formal diagnosis just for closure but as others have pointed out it costs a lot and could potentially screw up my life. And based on the trouble I have had getting diagnosed with carpal tunnel syndrome, I'm not sure I want to go through the hassle of getting a diagnosis when there are no treatments and therapies available for people my age. Yes, I am still having trouble with getting a diagnosis. Now it's "neuropathy--cause unknown." I am supposed to go see a hand specialist if and when they get my paperwork straightened out. Apparently when Dr. Worthless sent the test results over to my doctor he omitted some key information and until they get that information they can't proceed with diagnosing me. And this is for a fairly straightforward, common condition!

 

[Deno]

I would like someday to have a formal diagnosis just for closure but as others have pointed out it costs a lot and could potentially screw up my life. And based on the trouble I have had getting diagnosed with carpal tunnel syndrome, I'm not sure I want to go through the hassle of getting a diagnosis when there are no treatments and therapies available for people my age.

Just wanted to point something out.. This MAY BE a factor in the carpal tunnel, and if your in to trying new things to help it, try using reverse osmosis water for awhile, and water bottles without fluoride. See if it makes any difference after a week or two of this, if not you can choose to try for longer or revert back to your old ways. Take a look at the places you have lived and check if they were fluoridated, and if you drank lots of water. If there was never fluoridation where you are then you can ignore this. Goodluck!

No need for hate replies labelling this as rubbish or calling me a conspiracy theorist. This is something I believe may help, and it is my right to give this information out.

 

[Soup]

I think that this dilemma is another area wherein it may be a wee bit easier for us Aspie women. We tend not to appear as odd as our guys do & we tend not to be as large. YES, there are some very big tall women & some slight men, but that isn't the norm. Being a woman & known as having been diagnosed with this may be less intimidating to, for ex., NT bosses or colleagues than some big strange looking guy they now know for sure has 'a problem'. The thought of an Aspie woman having a melt-down (often looks like a crying jag with a little stimming thrown in) is one thing: the spectre of a grown Aspie man having a melt-down can be much more frightening to imagine & visualize for already nervous people who are not very familiar with Aspies.

Since my field is extremely conservative (fairly regular police background checks are required as well as other private info) I'm loath to get a formal diagnosis because of the professional implications it might have for me. I can just hear parents saying that they don't want their kid being taught by 'that retarded woman'. Until I'm safely retired, I'm going to leave things as they are & just be the introspective woman with all those hoodies!

 

[Tarragon]

Did anyone have problems when they did find out about this? Already, I am going through difficulties, and it's only a week since I found all this out? Apparently I've "changed" according to my girlfriend....

Anyone got any help about dealing with what finding out can do to you?

 

[Soup]

Some people go through the classic stages of grief: shock, denial, bargaining, anger, sadness & acceptance. These don;t always happen in a neat sequence & there's much backing & forthing. Some can be stronger & more apparent than others. The same process can happen to people who lose a loved one or get diagnosed with a life threatening or life altering disease: they mourn for their former health & life. This even happens when a person expected the diagnosis or outcome. For ex, losing a child after a long illness. The parent knew the child was in his final stages of life, but the grieving stages occur anyhow. Some models do not add shock, though.

In an Aspie, the shock phase may look like this: the person looks back over all kinds of life events & sees them in a whole new light. This can be validating in some ways or make the person very angry. So much wasn't their fault. They didn't deserve what they got. THey WERE misjudged & misunderstood.

Denial can look like this: pretending the diagnosis hasn't occurred or that it changes nothing. Believing that the doctor is wrong: this one can be a toughie because, we all know, sometimes doctors ARE wrong! Not acknowledging that certain habits & behaviours & conflicts have anything to do with Asperger's.

Bargaining can look like adaptation: going in NT drag, trying to act, sound & be 'normal' & thinking that this disguise is the 'real' you or that you've 'changed'. It can involve praying to god that if you make me an NT, I'll never do ____ or I'll ______.

Anger: kind of self-explanatory BUT it can also mean that the person is touchy, irritable, argumentative, gets mad over trivial things, frustrates easily or has weird outbursts such as going nuts screaming & swearing because someone accidentally bumped into him at the store. It can look like being spiteful, jealous or resentful or just distant in a huffy way. Acting even more Aspie-ish to shove it in people's faces.

Sadness: can look like needing to be alone much more often. Crying jags, lethargy, loss of interest in stuff you used to love doing, lack of engagement in life, letting hygiene or other essentials like health slide. Depressive symptoms etc.

Acceptance: you're at peace with the reality of the diagnosis & begin working with it. THis could mean hanging out here with other Aspies, reading & learning about it, telling key people in your life, no longer over or under reacting etc.

 

[Tarragon]

Well, I'm definitely somewhere in all that - all except the acceptance part at least (yet!).

Probably anger, sadness part. I'm alternating a lot with things, but wanting to be alone is very strong right now. which makes it difficult with my girlfriend who brought aspergers to my attention in the first place.

I'm not alone with this then? Knowing other people go through it too makes it easier. I will just ride this out. It's making it even harder to get things done at the moment. Everything seems like so much effort.

If I could just go off to an island somewhere and be by myself, that'd be perfect! Perhaps the shock part is still applicable as well. Wayyyyyy to many things in my past are explained by me being an Aspie, and it's very very draining to think through all these events. I suspect my girlfriend doesnt realise just how much stuff has happened to me. Its like I've found the key piece of the jigsaw puzzle and literally everything is shifting around me!!

 

[Spinning Compass]

Deno--the fluoride angle is interesting, however for several reasons I think we can safely rule that out as causing my carpal tunnel. But don't tell Dr. Worthless that or he will have a new kick! (He's the company doctor who is trying to pin my hand problems on anything but work-related causes because then they don't have to pay worker's comp.) Despite what he or anyone else says, my problems ARE work-related; I'm just not pursuing that angle anymore because it isn't getting anywhere.

What I am curious about is this: my animals drink the same water I do no matter where I live and I assume that is the case with other people's animals. And my animals don't seem to have any health problems and for the most part are extraordinarily long-lived. Not to get in a big debate here, but wouldn't veterinarians be seeing the same kinds of problems in animals as are being reported in people? Yet I haven't heard this to be the case and I work in animal research.

 

[Deno]

Deno--the fluoride angle is interesting, however for several reasons I think we can safely rule that out as causing my carpal tunnel.

What reasons are those?

 

[total-recoil]

I was diagnosed with anxiety in the eighties but at that time aspergers wasn't known about. At the time I was suffering phobia and panic attacks which I no longer have. The issue of daignosis is a tricky one as, in my case, the bottom line is aspergers ought to have been diagnosed decades ago. Given the fact it wasn't detected, I went on to suffer years of an uphill struggle which doesn't seem at all fair to me.
The doctor I saw recently was a disaster. It's really shocking that at the time he came close to laughing at my diagnosis and that made me doubt maybe I could have gotten something mixed up. Now I know, however, that the doctor was totally inexperienced as are most people with regard to aspergers syndrome.
My continued research leads me to conclude aspergers isn't an illness but what it does do is put the individual with aspergers at a considerable social disadvantage. Social interaction is unfortunately fundamental to social acceptance at work, at school, with regard to dating and so on. Aspies so often get depressed because they struggle to get acceptance. may be ignored, isolated, sometimes even ridiculed. At this point I still don't quite understand how much of aspergers symptoms interlock with the social interaction divide.
However, I feel my own approach at the moment is the way to go. What i do now, is take an objective look at my situation and I go a lot easier on myself than in the past. I no longer try to play the game by social rules but try to isolate the strengths derived from aspergers. Above all, I don't listen to or entertain negativity over a condition I was born with but continue to do things my own way. I can't say really how much it has helped to be able to see everything in context of aspergers. In the past I used to get so stressed out wondering why every simple thing seemed to be so difficult for me.

The only place where I've encountered any kind of "bias" or "stigma" about being self-diagnosed is on forums like this, believe it or not. Yes, I am somewhat self-diagnosed. As a child I was given the label "perceptually handicapped" and put into behavior modification and special ed classes and I get entirely what Soup said earlier about Aspergers-Autistic-Retarded-Nuts. So I don't talk about my past much--as far as the world is concerned I have no history prior to graduating from high school. I've put that part of my life behind me.

I have never had any one ask me whether I was formally diagnosed or self-diagnosed. I have had people tell me that there is no way I could be on the spectrum. In which case I change the subject. No sense talking about it.

I would like someday to have a formal diagnosis just for closure but as others have pointed out it costs a lot and could potentially screw up my life. And based on the trouble I have had getting diagnosed with carpal tunnel syndrome, I'm not sure I want to go through the hassle of getting a diagnosis when there are no treatments and therapies available for people my age. Yes, I am still having trouble with getting a diagnosis. Now it's "neuropathy--cause unknown." I am supposed to go see a hand specialist if and when they get my paperwork straightened out. Apparently when Dr. Worthless sent the test results over to my doctor he omitted some key information and until they get that information they can't proceed with diagnosing me. And this is for a fairly straightforward, common condition!

 

[Spinning Compass]

I work on a computer 8 hours a day 40 hours a week putting data into enormous spreadsheets (think 3000 to 5000 rows and 50 to 100 columns). But my troubles didn't really start until this spring when they changed from directly typing the data into the spreadsheet to cutting and pasting it from one document to another by mouse. So I'd say it's pretty obvious considering my job that it is work related but since the powers that be don't want to admit it I am seeking help elsewhere. I've been going to a really great occupational therapy clinic and they've restored my hands to about 95% normal.

Actually if you want to look at a possible toxin, I'd look at arsenic. I don't have fluoridated water but I do have a well and the water around here is known for its high arsenic content due to all the orchards and vineyards around. Supposedly the levels aren't high enough to cause problems but . . .

 

[Undiagnosed]

I have just recentley learned about Aspurger's is and am 100% certain that I have it. However I am not refering to myself as "self diagnosed" becouse that just dosn't make sence to me..... Saying that I am undiagnosed but Know I have it makes more sence to me...."Self Diagnosed" sounds to me like I would expect others to beleive and accept my "diagnosis". Someplace like this Group I would expect others to understand and accept that I beleive and know I have this..... but otherwise I don't expect people I know to necicarily understand. I have felt misunderstood a lot of times in my life so that is nothing new. And I have to realize that most people have no clue what they are talking abou in such things. I do want a profesional diagnosis and then I do plan to tell people I am diagnoses with this and if they don't understand or accept or beleive that well it is different than not acdepting a self diagnosisdiagnosis" It is as if to say in words or infering "who r u to question a fprofessional who know about this syndrome when u don't have a clue about it"

I beleive my son has this too and I am a little concerned about going for a diagnosis (both him and me, but especially me since I know what is going on inside my own head) becouse I am so certain that the both of us have this that I will be upset and feel misunderstood and misdiagnosed if He or I would be told that we don't have it.

 

[ShatteredUniverse]

Heh. I've been told by several people (though not formally diagnosed as yet) who have decades of experience with AS that I almost certainly have it.

I'd been suspecting for a couple of years that I was somewhere on the spectrum (ever since reading The Speed of Dark by Elizabeth Moon), but it was a total "O.O, so I'm really not a disturbed freak?!" moment when someone who knows what the heck they're talking about told me they were almost certain I was an Aspie. And then having several other professionals concur.

 

[Daniel]

Myself, I would fall into the "self-diagnosis" category. I have no need for an official diagnosis, as I have no need to seek treatment from the medical community, and I'm doing pretty well on my own. My sympathies go out to those who need the help of the medical community... to paraphrase Bill Hicks: I'm not sorry you're on the spectrum, I'm sorry you need the help of the medical community.

My older brother is most likely on the spectrum, with "symptoms" far more severe than mine, but he trusts doctors even less than I do. Whenever I think of the psychiatric profession, I can't help but think of Mel Brooks in High Anxiety, expressing the ambitions of those in their profession--"to make a good living."

To all the good, caring doctors out there, bless you! I don't like to paint everyone with the same brush. I've just found that doctors are only as good as what you tell them, and I have better things to do with my time than to provide enough information to a skeptical person just so they can perform an adequate differential diagnosis. I'll hit them up when I need some drugs.

 

[SallySlips]

I fall into the self-diagnosed category as well and I intend to stay that way. Getting a diagnosis will do me no good, and will only cost money that I don't have. I don't generally hold doctors' opinions in high-esteem anyway, so a diagnosis wouldn't mean much to me if I did get one. I've had too many bad experiences with them.

 

[Gomendosi]

Has anyone else observed a stigma associated with being a self-diagnosed Aspie? Such as people saying things like:

"You're just looking for attention."
"You're just making excuses."
"You don't really have Aspergers."
"You're just hopping on the bandwagon."
"If you haven't talked to a psychologist, it's not real."
"You want people to think you're a tortured genius. You're really just annoying and socially awkward."

I don't tell people that I'm an Aspie for this reason. I see people posting comments like these on boards and articles online and I'm afraid of receiving this reaction should I ever "come out". There's a genuine difference between being a run-of-the-mill hypochondriac and actually having the disorder.

I thought we could open up the discussion a little on this one, how about a fresh perspective:

I am simply playing the devils advocate and relating the flip side of the whole discussion, I am not refuting anybodies claims, simply putting the other side on the map.

If all the symptoms of Aspergers were also related to failing eyesight and growing a hump, because you don?t have to wear glasses or are stooped, would you then decide you are not Aspergical?
Would you still want to be an Aspie if it meant you would become increasingly blind and hunched over? At that point I would be after a diagnosis right quick!
After research into Aspergers, how many people still only see the mild traits in themselves, as that would be picking and choosing, I mean, say you touch one elbow occasionally while out on the town for the forth night in a row, you're out with 3 of your many "best" friends and your drinking and things are going great but you keep touching one elbow... obviously you must be an Aspie!

What if I said I can see dead people or move things with my mind or communicate with aquatic creatures, I?d be a nutjob wouldn't I? But I simply know I can do those things I said just now for the very precise reason that I read a book once and the author described a person that could do those things and that person sounded exactly like me... even down to hair colour and underwear size.

More realistically, the spectrum is a wide variety of things and with Aspergers being a relatively unknown syndrome the true debilitating effects are not as well publicized so many people still (even after recent events) think it is 'cute' or 'mild' or 'endearing', the fact of the matter is that it is a debilitating plague to some folk and they could very well take offence that an apparently quite able bodied person in a successful relationship, with a successful career and ordinary coping skills (generically speaking) could try to empathize. Perhaps you have eczema, would you like a person that has a tiny patch of dry skin on their knee to complain all the time that they have (like you legitimately do) full blown eczema, it might kind of bother you and you would be sceptical, might even require proof.

This is the internet and anybody can be anything they want to be, but ask yourself this, why do I feel stigmatized by the truth, if I am legitimately (something) then I have no worries about defending said (something) as it is my life, I cannot be dissuaded from it or tone it down nor do I feel the need to justify it because put simply, it is who I am.

Look, a doctor with heaps of credentials told me I have Aspergers, does that make him right, the other doctor that backed him up, is he right, two separate doctors obviously can't be wrong, can they, what if they are both wrong for different reasons, do I have the right to tell you you don't have it because a doctor didn?t tell you, your mum did?
Maybe it was your friend who said you have Aspergers, maybe you decided for yourself, but if that is what you truly believe then maybe it is true, go get a diagnosis and prove it to yourself otherwise don?t be upset if people tell you your wrong because if you're auntie or army buddy or teacher or gas station attendant said oh I think I may be (insert diagnosis here) and you knew they hadn't been to see a professional in that field, wouldn't you scoff as well... haven?t you?
Haven?t you ever had a friend who said I have a chest pain it must be a heart attack, or I have a recurring headache it must be a brain tumour, I have a chill so it must be the flu, I obviously have a broken leg (yet they are walking just fine) and didn't you just stand there and go Pffft, yeah righto, whatever.

We all think we are this that and the other at some point and Aspergers is the flavour of the month thing to be, maybe being upset that people think your self diagnosis is crap is an Aspie trait and therefore confirms your self diagnosis...

 

[ShatteredUniverse]

What really pisses me off is when people who have no gorram clue what they're talking about go on about "you're doing 'this' or 'that', and why don't you just stop, you big jerk!" all without even trying to specify what exactly it was about what we said/did that was so offensive. But since they haven't done any research, they don't know (and probably wouldn't care even if they did) that one of the hallmarks of AS is that we see far too many possibilities in social situations like these to the point we're either paralyzed and can't communicate at all or we stumble our way along, making people think we're uber jerks with enough frequency that people eventually don't give us the benefit of the doubt at all!

:banghead:

Yes, I'm very pessimistic this evening, and just a little ticked. (Just a tiny bit. . .)

 

[Spinning Compass]

While Gomendosi raises some interesting thoughts, I really don't think there are too many people who go around calling themselves Aspergers or Autism Spectrum Disorders just because it's the flavor of the month. If it's a hip thing to do, I've yet to see it. I know what the general public's reaction is to people on the spectrum and speaking strictly for myself, it's not a label I choose lightly. It's a label I'd really rather not have.

Even though I have not been formally diagnosed I do believe that I am on the spectrum like it or not because of my history. I had many of the classic symptoms in childhood, not talking, running around in circles (stimming?), not looking people in the eyes (my mother says she had to force me repeatedly to look at her). I had frequent meltdowns in school and my differences were enough that not only did bullies take note of them so did the school authorities who sent me to a counseling center called Child Guidance. Later I was put on Ritalin and sent to special classes in a separate school. So this is not just something I read in a book one day although reading did help me put the pieces together. Why haven't I gotten diagnosed? The bottom line is, if anyone would like to pay for my diagnosis I'd be more than happy to go get one. But I only have a finite amount of medical dollars available and right now I have other conditions that demand more attention.

So these are my creds. If anyone still thinks I do not belong on the spectrum, please let me know. I'd be MORE than happy to get off it! But no, I am not faking it. I've spent too many years in anguish wondering why I keep failing so miserably socially and not understanding why, to adopt this label as a whim.

 

[anne.bc]

I was officially diagnosed at the age of 7. Until I managed to stop them altogether in September of last year, I have had Aspie meltdowns for as long as I can remember. We can be sensitive creatures. I am definitely sensitive.

Last summer, I had even more of them and I think it was because I was starting to write my book on Asperger's Syndrome, so I was focusing on that a lot more than I normally do. My father doesn't know how to talk to me without triggering one (partially because of his memory loss. it really sucks. :unhappy: ), my fiance will troll me constantly, and I hate direct criticism when it is brutally honest. For some reason, more triggers occurred this one week of writing in particular. I had 4 meltdowns in ONE SINGLE DAY. After the last one (which my fiance started), he said "J**** C*****, you're over-reacting today." OH, THAT DID IT FOR ME. I was already crying before he said that, and that just made me cry so freaking hard I couldn't breathe, and for about 3 days after that I felt like that scene from Ferris Bueller's Day Off when Cameron is seriously traumatized and it's when they're at the community pool. I literally felt numb.

After one last meltdown in front of friends at a movie night, I finally got sick and tired of feeling randomly humiliated (I loathe crying in public as much as the next person!). I made a goal to stop having meltdowns altogether. So far, my last "accident" was September 22nd. It's almost been 4 months. Mind you, I HAVE come close to having meltdowns since, but I bit my lip and told myself "be strong". It's helping.