Do self-diagnosers ruin it for the rest of us?

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I don't pay attention to the ramblings of people on the 'net [and in person] in regards to fads and all of the other social stuff that I hate.

There's nothing to "ruin".

My label is enough to get the help I need, I don't care in the slightest that I have it or not for any other reason.

Without a formal diagnosis you have no leg to stand on in terms of the law, the ADA will most likely not back you up. I am a firm believer in getting a proper diagnosis, self-diagnosis is fine if it gets you thinking and then you go to a professional.

I dont have a problem with people self diagnosing....considering many of us do before we get formally diagnosed. Who has lived in our heads for the longest anyway? I take someones word for it if they say they have secret (or obvious) issues.... Is it an excuse? I dont know....But it is a reason for many behaviours!
Also....once we get diagnosed, we are expected to conform? E.g. If they have a problem with hygeine after diagnosis this can be changed..... Isnt that just giving people a label and then trying to turn them into an NT? In the NT world, it is considered hygeine to splash yrself in offensive (poisonous) perfumes....remove nealy every hair from yr body..... Isnt this a value judgement at times?
Diagnosis should help the person make choices for themselves.....it shouldnt be about forcing NT requirements onto people. Maybe some of those smelly unwashed people dont care if anyone will sit next to them on the bus.....and I dont see them as any more offensive that people who stink of perfume and wear brandnames and impractical shoes.....and call it "looking after themselves."

that is a brilliant description. I love it.

I've been keeping up with this thread for quite a while, and don't think I've yet had the chance to respond.

There are several places that have problems with 'self-diagnosis' of medical disorders. It's a big problem with Social Security in the United States. People will find a disorder, mimic its symptoms for the sake of diagnosis, and use it as an excuse to get out of work and a lot of ordinary social requirements. The problem is that the mere existence of these labels means people will try to take advantage of them. With the bad rap sheet neurological disorders are getting just from social security, the 'social norms' thing doesn't help.

Anytime we look for extra support in trying to figure things out, using 'Asperger's Syndrome' as a label, people assume right off the bat that we're looking to make excuses. The thought never crosses their mind that the person in question is actually asking for help and support in figuring things out.

Given the number of self-diagnosed individuals (most of whom probably actually have it), it's pretty easy to see where the hostility comes from. The occasional AS brat using it as an excuse obviously doesn't help our case.

The question is, given people's tendency to associate neurological disorders and explanations with the word 'excuse', how do we navigate that type of social minefield? How do we convey what we're wanting to say in a way that they'll actually see us eye-to-eye, and not make assumptions in complete contradiction of what we meant?

Plenty of people have correctly self-diagnosed.

And if I were applying for social security or other aid, I would certainly get a more 'official' diagnosis. BUT, as I said before, the problem is not with those of us who don't spend the money (for me it would be out of pocket for the most part) to have someone else tell us what we already know. It's with those who don't understand neurological problems and equate them with "excuses". It isn't me that's the problem. I'm not asking for anything except perhaps a bit of understanding, and if I were, then I would have to do what I had to do in order to make it happen. It's those who insist that what's been causing me difficulty for over forty years isn't real, doesn't exist/I don't "really" have it, and is merely an "excuse" for "bad" behavior.

~Kate

I think we're on the same page. People tend to expect excuses, and assume that's what they're getting anytime someone gives an explanation. My question stays though, how do we communicate our explanations in a way that isn't seen as an excuse?

I'm not trying to cause a ruckus here, but my limited understanding of human behaviour and psychology leads me to believe that someone who is told when young by an 'offical' 'authority' that they have autism/asperger's is probably more likely to play to it than a free range aspie, who has spent all of their life desperately trying to make up for a lack that they don't understand. That's just a hypothesis.

I'll just say that having a diagnosis is no defense against being a (rummages in head for a PG word) silly beggar. And likewise, neither does being undiagnosed.

Sometimes self-diagnosis worries me. Some self-diagnosed autistics cannot be professionally diagnosed because they are not significantly impaired. They fit in just fine with other autistics, and have many of the same experiences, but they're not disabled. (There are some officially diagnosed people who are the same way and technically should've lost their diagnosis. Of course, they didn't lose their autistic cognitive style and way of relating to other people, making them still autistic in every sense but the diagnostic.)

That isn't a problem in and of itself, especially if you remember that there are basically two different definitions of "autistic"--the diagnosis, and the brain-wiring/culture that doesn't require disability to join. But it can become a problem when people use those individuals as examples of what Asperger's is, and form stereotypes based on that observation, because then they conclude that people with Asperger's never need any help and just need to be told to try harder to be normal.

The fundamental problem isn't self-diagnosis at all, really; it's that people see one individual with a certain condition and assume that everybody with that condition is very similar. And when they see a self-diagnosed, non-impaired individual and generalize, it can be a great way to excuse denying you for services because "Asperger's isn't really a problem; it's just another word for being a nerd."

On the other hand, of course, they might as well say, "Oh, you're Asperger's? That must mean you can't do anything for yourself and can't learn anything," if they'd generalized from the autism stereotype. Either way, we lose out.

Stereotypes suck.

I have no reason to believe anyone on the Internet, which makes this whole Diagnosed v. Self-Diagnosed debate frustrating to me. Everyone on this board is Self-Identified, so I assume anyone of either identification could be lying.

There are people with epilepsy, for example, who are disabled by their epilepsy, and others who are not. Yet others do fine for a while and then run into a problem with seizures and can be considered disabled...and conversely when a new medication or treatment comes out there are some who were disabled who get good enough seizure control to work or go to school. There are people with migraine who have one attack a year and get through it with over-the-counter meds, and others who have them so frequently they can't hold down a job. I take issue with "disability" being a criterion for an objective neurological problem. That I can function in a job does NOT mean I am perfectly fine. I have epilepsy, migraines, and probable AS, but I am not disabled in the technical sense, as I can and do work. Still, if any of the above should cause me, in the future, to need more assistance, telling me I don't have any of them because I've spent the majority of my adult life "non-disabled" is a disservice. The same criteria should apply to neurological conditions as apply to other medical conditions. We don't require ppl with asthma or systemic lupus to be disabled in order to be diagnosed, nor should we require it of ppl with neurological disorders.



On the other hand, I've been told for 40 years I just need to "try harder". I'm about "tried out". Insisting that a person be disabled by their condition as a prerequisite for diagnosis puts those of us who do not fit that criterion in a situation where we get burned out, depressed, marginalized by those who think we need to "try harder", etc. You wouldn't insist that a child with mild cerebral palsy (can walk, talk, do well in school, just has some trouble with gym class) "just try harder to lift those weights in PE class" and not diagnose him with CP because he's "normal" enough to function in many ways. Why, then, would anyone insist on that for another neurological condition?



Here, I agree completely. None of us should be stereotyped. Not the obviously autistic person, not the high-functioning AS person who is worn out beyond belief by what many would consider a "normal" workday and continues to plug away at it for years.

~Kate

Yeah, but how many girlfriends have you had in person?

In your own world means exactly that, and you need to put your mind out for others to see for them to know you, if even for the shortest amount of time. If you did what you said you are doing, you wouldn't even be here talking to others, no matter how detached and impersonal it is.

As you can see, I've had an entirely different experience. You're right though. I think that what I was talking about was fairly common with me just because I seem to attract as*holes. I shouldn't have presented my post as though it was the only reason people think that way.

Of course, the thing is with that way of thinking if you even call them on it it's further proof that you're apparently lying, even if you're truthful. And of course, look out if the mods are like that. This is why I don't go on forums anymore.

Honestly, I don't buy that people claiming to have things for social security is the problem. That's just always been the excuse to use terribly dehumanizing methods to separate out the "deserving poor" from the "undeserving poor", and it's existed since long before the aid being given to poor people was specifically about disability. Associate people who want aid with lazy people who just don't want to work, and then use that stereotype to justify behaving in extremely crappy ways to those applying for said aid. According to a disabled historian named Paul Longmore it dates back to the Poor Laws in England and has absolutely nothing to do with either disability or the actual number of "slackers". But it's become a disability stereotype ever since they started doing things like licensing disabled people to beg, and giving welfare benefits to disabled people. (There is a parallel racist stereotype about welfare for poor mothers, and it likewise serves to dehumanize them, treat those seeking benefits like crap, and convince people who believe the stereotype to call for an end to such aid.)

And I think it's even worse when disabled people ourselves start believing the stereotype and trying to do the dirty work of policing ourselves, for the people or systems the stereotype benefits. Because the stereotype doesn't benefit autistic people any. Frankly I would rather see lazy people on benefits than the situation now where those seeking benefits who need them are dehumanized, treated like crap, expected to be criminals, and ultimately often denied benefits we need to survive. The benefits are so crappy anyway that I think you could make a case that nearly anyone who would put up with them actually needs them.

And I don't really buy that people who self identify but aren't (by one person or another's standards) significantly impaired, or for that matter people who "ought to have lost their diagnosis", are a true problem either. Like someone else said, I'm allowed to be epileptic even though my seizures are well controlled, and even though I have known people who have seizures so often that they are also considered intellectually disabled because seizing every few seconds makes them unable to learn easily. I'm allowed to be asthmatic even though my asthma is really mild. The fact that handbooks like the DSM (which aren't even the worldwide standard for diagnosis) make it a requirement that a condition significantly limit certain kinds of activities, is totally arbitrary and discriminatory to those whose conditions are considered (also arbitrarily, since this is a professional turf war issue and not an objective issue) psychiatric.

The fact that some people see one autistic person and think they know all about autism isn't a self-identification issue, it's a sloppy thinking issue, a stereotype/prejudice issue.

Plus, where do you draw the line? There are plenty of people on this board who actually meet the ridiculous requirement that AS people should have no delays in self-care, but also meet the ridiculous requirement that they be significantly impaired at any of certain other activities. It bugs the crap out of me when they or people who only know people like them make the generalization that anyone who can post here must find self-care really easy, or for that matter any other area I (and/or many other posters here) have significant trouble in. Should I say it's a problem that they call themselves autistic? I know people who do but I vehemently disagree with that idea. Or we could draw the line even further --anyone who can talk, anyone who can type, anyone who can do either of those "eloquently"... there are people who draw the line there and I disagree just as much. And likewise I won't draw the line at people who don't have some requisite number of significant impairments.

Overall: Autism is a useful concept when it gets people services, contributes to (self-)understanding, brings people together, or has other positive benefits in people's lives. It stops being useful when it becomes a way to divide people in destructive ways, do harm, cause diagnosis wars, etc. Then it just becomes a pointless weapon.

I agree completely. The problem is how do you deal with that?

This strikes at the very heart of a difficult issue, and without a way to deal with it, we're basically running in circles after our own tails, either by policing ourselves or defending ourselves against people who will never change their mind.

How do we deal with that? I'm looking for answers, not rants, not complaints. I want ideas, not feelings.