Asperger's syndrome self-diagnosis

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Have you actually done the numbers? 'Cause WP really isn't dominated by self-diagnosed people; the overwhelming majority and most of the most active members are officially diagnosed because they needed more help than a self-diagnosis could give them.

Plus, if you read the posts on here about people's experiences, "ultra mild" is far from the truth. We have people here who never leave their houses; people who have never had a friend; people who lose speech or never gained it; people who can't live on their own, or do so only with great difficulty; people so overwhelmed by sensory input that if it goes on long enough they can't even figure out what's going on around them. Yeah, we have some "ultra mild" people here; but they're not the majority, and even those who can be described that way shouldn't have their struggles trivialised, because it seems to me that subjective distress has very little to do with your actual degree of impairment.

Mostly, WP is a bunch of people who are mild-to-moderately autistic, who can use a computer but still have a lot of real struggles. That covers about 90-95% of the spectrum of ages 14 and up (the rest are unable to use computers; but some of them are still represented by their parents.)

You're seeing our strengths on here, for the most part, because communicating in text tends to be an Aspie strength, and can be a relative strength (compared to spoken language) for the less language-focused classic autistics. It's a common fallacy to assume that we're as capable at everything else as we are with writing; but it is a fallacy.

Last edited by Callista on 11 Jul 2010, 5:30 pm, edited 1 time in total.

Dear OP,

I am not really sure what the purpose of your post is. Are you pissed off that there are people with ASDs who are more functional than you and yet are permitted by their very qualified doctors to have the diagnosis? Are you angry because you have other disorders and comormid conditions and those who don't can post on Wrong Planet?

I have a hard time believing that you were motivated purely by a dislike for those who want to adopt a convenient label, as you make a complaint about people with AS who just aren't as disabled as you are. I'm not sorry that I am not dyfunctional enough to match your standards. My life was messed up enough to fit MY standards and it took 45 years, seventeen of which I spent on powerful medications and in one frightening visit to a psych ward.

I know that in MANY ways I should be thankful that I have been as lucky as I have been, and I am! I can hold a job... I just began a relationship... but I also have Asperger's syndrome and it affects every aspect of my life in such a way that I would have lived a full life without it, which is unfortunate and I have been working myself into burnout.

I can be thankful that I am not as disabled as I could have been, but I will never feel guilty for something I have no control over.

Last edited by dyingofpoetry on 11 Jul 2010, 6:12 pm, edited 2 times in total.

Hi OP,

Your question is valid, but you make hasty judgements, friend. I can understand why, though.

I can only really speak for myself, but I wonder if some of the older members who were dx whether by self or by establishment may agree.

I spent 36 years in a fog with much trauma under my belt. I waxed and waned through this life. I saw my first psychiatrist at 16, dx at 18 with agoraphobia, generalised anxiety disorder and major depressive disorder. Then at 21 with Borderline Personality disorder, Schizoaffective, Narcissistic PD, Anti-social PD and labeled a sociopath and psychopath interchangeably. I have had 13 psych hospital admissions in 15 years, been in trouble with the law and medicated to the eyeballs. In 2007 I was dx with Bipolar II rapid cycling but the symptoms I have only fit some of the criteria. It took 2 years with my psych team to nut out why it was all going so wrong, again. Something significant had been missed.

I have Kanners syndrome(severe autism) and Aspergers in more that a few members of my family on my fathers side and it was explored. I fought the dx of AS tooth and nail. Not because I was ashamed or worried, but I didn't want yet another dx thrown my way. I wanted this dx to be TRUE and TREATED(helped). I wanted to be given the tools to understand myself. The Narcissistic and anti-social stuff has been retracted. I am no longer labelled a sociopath or psychopath which comforts me no end. I am 36 years old and I have been officially dx with AS, Bipolar traits, OCD traits(more O), Depressive phases and serious physical health issues. I am on disability and more autistic than ever, now that I know what that means.

I have held good jobs at times, even supervisory positions. I have raised a child and met a great man that I am engaged to. I have also started my science degree but had to defer due to my current state. What I am saying is that good things come and good things go, but life remains the same. What is important is that on the days that you can do something, make the most of it. Work on improving your self-esteem and self image, and......

.....love thyself regardless. Your spirit will get you through the pain.

Mics

I also wonder what people who dislike mild Aspies or accuse them of being fake would do if the spectrum were ever widened to include more people, or if psychiatry's ideas of what autism is and is not changed completely. You really never know, they could decide that what is called autism now is a completely different disorder. I don't really see how having a label that was created by human beings makes someone feel like they are MORE autistic or MORE "anything else" than somebody else is. Psychiatric labels change all the time, look at how much ideas about autism have changed over the last 50 years, They could be saying something completely different about who is and isn't autistic in 20 or 30 years. Diagnoses are just observations made by qualified professionals to classify people, but nothing is written in stone. I am very interested in psychiatry and I respect qualified professionals most of the time, but they ARE just people, it's not like the label is something handed down from the gods. It was created by HUMANS and it could change at anytime.

We would all still be the same people.

/rant.

Last edited by MotownDangerPants on 11 Jul 2010, 6:11 pm, edited 1 time in total.

As for those who have actually made it here, unless they are trolls or people wanting to "fit in", there is probably some truth to as to why they are here.

I do not have a diagnosis, but i have the verbal statement from two psychiatrists that said that i was a very probable case of Aspergers, the last one also said that i should also check for ADD. My real (second, first one got interrupted) path to a diagnosis starts this autumn, and i really need that diagnosis to get the help i need so i do not end up unemployed again.. and again, and again, and again.

I've already missed so much of life and i cannot afford to miss much more. Now, if there were no help to get, i wouldn't care less about a diagnosis. I'm not a severe case of autism, or even aspergers, but i DO have problems in life.

Just because i've had several modest to high paying jobs (which i lost due to social demands and focusing problems), i've had a girlfriend, more than one friend and even female friends and are living independently - does NOT mean that the challenges are over.

I could still loose everything because of factors that are out of my control, and that is one of the things i need help with to secure my future so i can live a normal life (albeit alone). The future worries the hell out of me, and i wonder if i will be able to finally "breathe out" and settle into a life of my own.

As for people trying to fit in; i took the AQ test with a close relative, who has always been a bit flakey and "not the sharpest knife in the drawer", she really tried to fit in with the answers, but i suspected that she was more interested in the part about "fitting in" than to get a proper diagnosis.

Some of the things i tried to explain to her about "special interests" she said she had - but the thing is: she had never had any that i could remember from the time when we were younger - or any other ASD symptoms. I do not even know if she understands the implications of any of the symptoms. Borderline is probably a better diagnosis.

But, i guess some people are just like that.

As for the OTHER SIDE of the coin: there are probably MANY aspies that have learned to cope with the problems in life, but are still struggling with many things, they will live their lives totally ignorant about the help they can get, many of them are older and are "doing ok", and some are younger and live in societys that do not take autism seriously.

Forget it Moog... Stickied or not, some of us will just never be disabled enough for others.

"You're not autistic dammit! You're not autistic enough! Show me your diagnostics!"

Bah! I don't care if they have the best of intentions. I just say, "bite me."

Wow, well done for quoting my deleted post! I was going to post something else, but I just can't be bothered.

The thing that annoys me is self-righteous people who are usually hardly out of childhood and whose parents paid for a diagnosis and did all the work of getting a diagnosis (and it can be very hard even in cases of severe autism) making the assumption that

A. Everyone else could get diagnosed as easily as they did.

and, in some cases

B. Since they lacked insight and thought that they were fine socially and otherwise, noone else could possibly have insight into their own ASD-related problems.

C. That people who have struggled with things all their lives can't have problems because noone has apparently noticed besides the person struggling.

D. That noone has noticed the problems of the undiagnosed person- they may not have been called any kind of autistic, but most of them have been called strange, lazy, rude, badly behaved, "doing it on purpose" and many other similar things.

I sometimes see people who claim to have no problems due to AS and I wonder why they think they have a disorder, but it doesn't bother me. People can tell that my problems are real, and if I encounter one of the "it doesn't exist or it's too mild to be considered a disorder" people, I just give a brief explanation of how it actually impacts upon me, and the usual response is "I was wrong, I apologise.".

Thank you, I'm talented.

I was about the write this off as the standard anti-self-dx rant, but I see you also mentioned being bothered by diagnosed people with fewer/lesser issues. It sounds like the real question is why do some seem to do well and others have a much worse time? That if the dx is the same, and you're not doing well, that the only "logical" conclusion seems to be that you therefore have a personal failing. -- Which is an understandable feeling, though isn't likely the reality of things.

The DSM criteria doesn't cover things known to be associated with ASC's. I.e. some people can have severe sensory issues, and others none that are significant. So, same dx, but maybe very different experiences. And then other things like temprement (oblivious vs. hyper self-conscious), tendency to shutdown vs. meltdown, predispoisiton to depression, OCD, bipolar, PTSD, and so on. And further, things like special interest in computers vs. muppets, in terms of employment. Donna Williams ('hippie' that she is) calls a person's particular mix of stuff their "fruit salad."

I suspect there's also just a lot of dumb luck (which the DSM also doesn't account for) involved. I have a relative with a lot of traits, but she's from a different culture (and looks different, racially) so people write off her quirks to the cultural difference even though that's not what it is. And she's oblivious, too -- slides by in life not knowing that that helps her. I think things like that can lead people to saying, "it isn't really a disability" -- they have talents and luck they're not aware of, and need to stop over-generalizing.

Also, dumb luck for external things like meeting the perfect person to be their spouse/helper at 19, stumbling on good people for friends, good vs. abusive upbringing, finding jobs that works out (my first several involved very little human contact and payed pretty well), having family money for endless grad school, and etc.

So, the official dx may be the same, but that isn't enough info. to tell you about someone's difficulties, or how their life is going. It's just a blunt instrument that way.
I think people overall need to be careful with over-generalizations, and try to consider others' experiences with an open mind (and not try to guess too much from superficial information).

I'm glad I waited until Michhsta posted.

I've gone through life in a fog as well...and with trauma. I only go so far as to say that I have something - and I believe it is ASD-related without giving it a specific name at this point (such as AS). I was sent to a psychiatrist by my elementary school as a kid for issues of being a loner and having trouble interacting with others. I told myself that even if I told the doctor how I felt, nobody would really care. He asked me was there anything wrong that I wanted to talk about and I said, "NO." He talked to my folks for a minute and that was that. There was no need for him to push any further because I don't think we had a diagnosis of AS or some of the other conditions back in the 1970s that are now recognized.

And I continued to have trouble and confusion in my life. That time has been punctuated by some positive experiences, but mostly I keep going through the same things over and over trying desparately to get a different outcome (insanity?). I've noted here that it took me getting all the way to my 30s before someone noted that I had a very bad problem with eye contact. I also tend to get lost in pursuits that don't even make any sense to me. They seem less like special interests and more like obsessive/compulsive behavior. I had to get to a point where I got involved in other interests that would take up enough time to the point that I'd be willing to let go of the original interest/obsession-compulsion.

I've spent my whole life being criticized for not thinking/acting like a normal human being then ostracized for not being able to think/act normally. I've been discriminated against on my job. I've spent my whole life wondering why it's impossible for me to feel "a part of" rather than "apart from" wherever I go.

I've spent my whole life listening to "normal" people tell me, "You just need to..."

I've spent my whole life not understanding why people say I seem disconnected from life, in a nutshell.

Something is wrong.

Before I came here, I had NO HOPE.

Again, let me repeat that I AM NOT TALKING ABOUT PEOPLE WHO HAVE BEEN AFFECTED ADVERSELY BY THE DISORDER. I am talking about people who are and have always been completely functional and only have very mild social anxiety or something like that, but who diagnose themselves with asperger's syndrome nonetheless.

~Kate

Then you're not talking about most of the people here.

~Kate

I want to reiterate this point. On the internet people only show you the part of themselves that they want you to see, and your imagination fills in the blanks based on your opinion of them. Some can be more open with the problems that they are having, some cannot. As I understand it an inability to verbalize the problems you are having and why, is quite common among people who suffer from AS.

Personally I cannot really talk about the more serious problems there are with my life even here. I find describing that type of thing very difficult, and in the end too stressful to be worthwhile. The great thing about WP is that there are enough people who share similar problems, so there is inevitably a thread about your issue somewhere. I get to find realistic advice, that I have no idea how to ask for myself.

I try to give advice, in the couple of areas where I have been more successful, because I want to help someone in the way others have helped me. Giving advice without sharing my own problems, may give the impression of being more functional than I actually am. I am also starting to realise that it does not count as proper social reciprocity, unless you share your problems. But hey, if I properly understand the back and forth of social conversation, I probably wouldn't be here.



I think you have said yourself that it took you a couple of years to realize how ironic the term 'mild' was and how pervasively AS effected your life, the same could well be true of the other WP members you speak of.

From what I've seen of the active users, this is clearly the case.


I'm pretty hesitant to self diagnos, but I honestly fit in a lot of the categories and have had a couple psychologiest (not psychiatrist!) point out and agree that I have many AS traits. I have OCD, Severe Anxiety (some social, mostly generalized) and Clinical Depression. I'm currently pursuiting neurological testing with a specialist to get a legitimate AS diagnosis. The thing is, as far as payment, the testing I found is with a professional who is widly reccomended and FREE (to get the testing). Now as far as seeing it as a blessing not a disorder, I for one don't. BUT at the same time, knowing what I have and finding other people who as well have similar issues as me and struggle with the same problems that nobody else seems to even have, is a blessing. I think that's why you think people consider it trendy -- because people might not be adverse to getting the diagnosis or even want to get some form of diagnosis because it would explain already existing conditions they have. I know that's how I feel.