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

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Yes, it's quite what I'm trying to get at. You don't have to be some kind of walking autism stereotype to get a diagnosis. (Though in the case of "significant enough to seek help", there's the complicating factor of comorbids--you could, for example, have sub-clinical autism but need help for co-morbid depression.)

I do need to make the distinction that when I say "disabled", I don't mean "disabled" in the sense of "disabled enough that you can't realistically support yourself", which is the sense in which some people (including Social Security) sees it. Nor am I going through some checklist of diagnoses and severity levels, some of which are arbitrarily designated "disabilities" and some not. I'm strictly going by the criteria of, "Do you have a set of abilities that allows you to fulfill society's expectations of the average person, with a similar amount of effort and without technological or human assistance?" If not, there's a gap, and that's what I mean when I say "disabled".

Lene,


You wrote:
"The thing is, most if not all the symptoms of AS can be helped. The person may not initially be aware of their poor hygiene, but certainly once it is pointed out to them they have no excuse for not doing something about it."

Okay, let's talk about hygiene,... I have a few words for you, m'dear!

First of all I would hope you do some decent research and put a good deal more consideration into your topics before you hit then pen. - Being candid is something I value highly, but it loses it's significance when the person being candid lacks knowledge or understanding about the issue they're being candid about. In fact it can often end with them only hurting others where they initially wanted to share valid thoughts.

You guessed it: This is such a case!

*******

A lot of us have (have had) poor hygiene (once/for periods/more or less always). But poor hygiene is rarely an issue in regard to diagnosis. Most who have an issue with hygiene will become aware of it long before they ever hear about As or were diagnosed.

There is a Reason for poor hygiene far beyond taking a daily bath!
Poor hygiene is rarely just about "poor hygiene" and is not something you can just deal with by taking a bath twice a day. Very few people walk about smelling badly or being picked at, if they can just go and change it with a bath - or any number of baths.

Something that very often plays a major role in "poor hygiene" issues with people who has Asperger's Syndrome is 'Hyper Sensitivity'(1*). And believe me: I know what I'm talking about here, because I have battled Hyper-Sensitivity all my life! - Like most people, I too like good hygiene, but it is nevertheless something that to me is a luxury I frequently lack the emotional funds to indulge in ... because, I have to consider my sanity first.

... When bathing brings you such discomfort that you're more or less incapacitated for an hour after you're done bathing (or 3-4 hours if you have washed your hair during the bath (something which in our time is normal to do EVERY time you bathe!), it is about a little more than "doing something about it" or "just sitting there doing nothing".


(1*) = (I can see from your post that you are probably among those of us who do not have this problem. Or if you do have any sensitivity issues, they're likely of the IN-sensitivity kind, and not the HYPER-sensitivity kind; both are frequent among us)

*******

Many aspies are perfectionists.
We are also logical people.
Another common trait: We are stubborn and don't give up easily.
We will go to great lengths to achieve what we set out to achieve.

Now consider this:
It is a fact that many people with AS are having great difficulties in regard to all kinds of social inter-relations. Most of us have problems which we would be happy to change.
The great part of us who have some level of hygiene issue become aware of it very early on, and the "solution" generally does not seem very complicated but is easy to understand, and we quickly realize what we should do in order to change it.

When we know these things, does it not give reason to consideration that so many of us do not act in accordance to what so easily could change our "poor hygiene" into one of "good hygiene"?

.......

There're different reasons to why we don't all ruch an get ourselves a "great modern hygiene".

One reason is that some of us simply do not agree with the modern consensus about what is a "good hygiene". Personally I think modern view on this issue is way beyond what is healthily reasonable. Modern society is hysterically puritanistic, and symptoms of the fear of all that isn't strictly regulated is everywhere and getting more outrageous over the latest decades (if not centuries). For those people with AS who are both highly intelligent, logically inclined, idealistic and unafraid to think outside the box, this is not an uncommon way to see things. And we will often fall into the category of aspies about whom it is said that we have "poor hygiene".

However, there is another reason, which will often have more profound hygiene issues. And as I've stated above, I am also among these. What sets us apart from the above described, is that we often, or at least sometimes, suffer from our "poor hygiene". And I find it very unlikely that any of us who has this kind of problem, just let it be without trying to change it. Our problem is not that we excuse ourselves with our Asperger's Syndrome (the majority of us have suffered from this problem for years before we ever heard about AS).
But I should have made my point by now.

*******

There's also another known problem so many of us suffer from: Procrastination!

This is not something we suffer from because we "can't be bothered" to deal with it. It is actually an issue. It is - believe it or not - a real problem and something people with Asperger's often battle.

(Hell, Asperger's Syndrome is real as well! Truely!, I'm not kidding!)

*******

Lene,

I know I've had a very sharp tone in this reply to your post. And I'd like to make it clear that I am not in any way writing in this manner because of any personal issue with you. Nor is it because I have a mean streak and want someone to punk or bully.

The only reason I am doing it this way - and I would do it again, no matter who I was replying to! - is because you happened to address a very delicate thing that I know so many, many of us silently have suffered with for most of our lives.
It isn't a coincidence that there hardly are any threads or posts about this topic in our forum!
Take a look at it: This is a large forum and we have a vast amount of topics, some of which are brought up again and again. And also: Many of the topics brought up are such that are very painful to talk about for those who do write, but they do it because people here very often are very brave - way beyond what we see elsewhere (generally speaking, of course. - I'm not saying NTs aren't brave).

And yet, the issue of "poor hygiene" is almost unspoken of. And it's not strange, because it is perhaps one of the most problematic issues a modern person can deal with. To have poor hygiene is almost worse than being a liar, an analphabet, or other things that are heavily stigmatized.

And this is why, when the subject is finally brought up - even if indirectly - it deserves to be treated with understanding and kindness ... especially here, among aspies, because it is for us such an especially distinct, problematic and painful issue.

*******

Excuse my lengthy post. I simply felt it was too important to not say what I felt needed saying.

And once again: I hope Lene especially will forgive me!

^L^,


Puzelle.

Poor hygiene does cause sensory issues for the people around you--some of whom may be Aspies. You're right, Puzelle, in saying that it is a difficult problem to solve. What can't be excused, though, is not trying to solve it; because, like unintentional insults or violent meltdowns, it can hurt others.

But it is quite possible to be unaware that one has poor hygiene, and quite possible for it to be very, very difficult to learn.

Or impossible to learn. I live in a building full of senior and disabled people. We have everything from mobility impairments to psych issues, many people having more than one impairment. And a lot of people here do not get adequate services. Hence there are many many people here who can walk into an elevator and the elevator will stink for the rest of the day. And we have even had people take a crap in the washing machine, or pee on the floors.

It's a serious problem here. At its worst it interferes with basic sanitation and at it's best it makes everyone hold our breath on the elevator.

I know some residents who just get angry and go "take a bath already!" but this is a completely useless way to respond. Everyone here with poor hygiene knows it with the possible exception of some of the people with dementia. The problem is that nobody can help it and lots of people don't qualify for services. I don't think the local mental health agency bathes people and the visiting nurses association probably doesn't take people whose reason for not bathing gets classified as psychiatric. Even many people whose problem is not psychiatric have trouble getting services. And so there is absolutely no solution until and unless people get those services.

I have someone come into my apartment to help me with hygiene six days a week. They give me either a full bed bath, an "only the smelly parts" bath, or a "only the private parts" bath, in addition to other things they assist me with. If it weren't for them I would be one of those people stinking up the building. And the fact that I have these visiting nurse services is partly dependent on things like my age at diagnosis and other factors I don't control.

And when you have absolutely no control over your hygiene, having people act like it's easy (not saying Callista did, but the original person who posted about hygiene on this thread did) is a slap in the face. It helps nobody. If your hygiene sucks you generally already know people can smell you because if you get to the really disgusting levels of it, you can smell yourself. Sometimes it's offensive to your own hypersensitivities. And the worst part is having people enraged at you when you can do absolutely nothing about it, or having people tell you "go shower" as if it never occurred to you.

I can understand what it's like to lack hygiene as well as understand what it's like to have hypersensitive smell around a lot of smelly people who piss on the floor in your own building. But it seems like we are in a no win situation. This is one of the places where disabled people who are poor enough to need public housing are sent. I think honestly (and have heard from people who know the people who control this place, things that add to this suspicion) that this is one of those situations where the people who send people here think none of us matter and just sort of throw people here without helping get people the right support. So there is an attitude, I don't know quite the words... like we are not entirely human and therefore if we are put into a position where some of us are doing things that are offensive to others senses... well none of us are real people so helping any of us doesn't matter. So who cares about our comfort because we are just nonpeople and as long as none of us are smelly around the real people then it doesn't matter. (Being smelly around nonpeople is a nonproblem.)

So yeah, it's annoyingly complicated. Having to deal with the smell is bad, but blaming it on the person who smells isn't generally the solution.

b9,

You said you're in your own world and you don't put your conscious out there for others; this taken literally, uh, no, you're not in your own world and your conscious is out there for others to see (I remember reading you had peer relations; it doesn't matter which type of); I and everyone here can see your conscious out in the open.

I know people with ASDs who're actually in their own world and they don't put their conscious out. Literally. (Whether they want to or not is impossible to say as they don't communicate.)

I find reading your experience really sad, and I have experienced something like it.

I've been told that I am supposed to suck it up and am just making excuses, also that I "look too good" to have AS, so therefore if I have it it must be a mild case. " You look almost normal, therefore you have no problem" People who have no idea how much I try, or what's going on in my head, yet they make such assumptions.

This attitude is what's kept me from disclosing in the past

I don't think it has anything to do with self-diagnosis, really, but the other person's attitude in general.

For instance, I have a neighbor who will ask how I'm doing with things and such from time to time, who is really understanding and will help if I ask her about anything, or will offer advice, which is nice.

But, I have other neighbors who have already decided I'm just a big "weirdo" and it really doesn't matter if I have a diagnosis or not.

...then there is the 3rd group, who see me doing things like taking out my trash, driving my car, etc., and to them I appear perfectly normal. They have also decided that I am, regardless of what I do, because they don't know me really. But, if they were to walk up to me and I didn't respond right away, they would likely write me off as rude immediately, and there would be no more to it. Explanations would not help.

It's kind of like those people who see homeless people and talk about how they should get a job. Well, those people are at a disadvantage to start with... it's not like there are always nice clothes at the charities or anything. They get what they get and do what they can with it. They don't have the advantage of already having a job and being able to buy nice clothes all the time (which oftentimes is why the guy in the suit is saying that about the homeless guy). Their funds often go to food and things they need... unless they hit the lottery or someone took it upon themselves to buy the person nice clothes, they probably just can't afford it. People tend to forget those types of things though, when they live that way.

Just like with us-we don't have the advantage of having the same wiring in our brains that they do, and they forget that they didn't have to learn everything they know. Because we look just like them, they assume we are, and anything different is hard to comprehend that it could really be that way. It's easier for others to believe that we are just rude people, or weirdos, and WANT to be that way... than it is for them to realize that we think completely differently in most ways. ...and it's hard for us to understand why they do things the way that they do as well.

I think that people... in general, make others look bad. Because it's hard to separate it once somebody says they have something, and not categorizing it as "everyone in this group refuses to learn things this way", or if they see a kid acting up "everyone in this group should be acting like this", and when something strays from their idea of what is what... and it just doesn't fit into their mental picture, then it's an excuse and is non-existent for that person.

Wow, that was a confusing thought-I hope it made enough sense to follow it though.

It's like, if I met a person who was really really mean to me, and they said "I'm sorry, I have (insert disorder name here)", it would be hard for me to not think of people with that disorder being like that all of the time... and if they didn't say anything at all about what they have, I would assume they were just a mean spirited person the majority of the time.

It's a catch 22... if you say it, people that don't understand it or care to, see it as an excuse a lot of the time, or just refuse to believe it.... and if you don't say anything, they think you are rude or just plain weird.

Maybe we're debating about nothing, if you're differing in the way you're defining disability. I am using the strictest definition of the word, which is what the Social Security folks and others use. If you're defining it the way you do above, I would suggest that the degree of impairment that most of even us "self-diagnosed" have (with me it's in emotional communication, maintaining personal relationships, etc) is disabling.



Again, this seems to be a different definition from the one I was using when I made my comments. The only danger I see is that those of us who *do* require major effort to do what most ppl do with little or no effort, but still can do so at least enough to go to school and work, may be dismissed as having a different "cognitive style" and dismissed by both NTs who think we're just not putting in the effort and by those who claim to stand for all our interests but don't want to acknowledge us.



It depends on how you define "gaining the skills they need to match up to society", really. There are adults with CP who you wouldn't know they had it unless you challenged them physically. They didn't outgrow their CP, they learned to compensate for it. Just as not all autistics are non-verbal, not everyone with CP "struggles to walk". But, expecting the adult with mild CP to have the same physical stamina as someone without is unfair to that person. I don't really think most ppl "outgrow" ASDs as they do the commonly seen developmental delays of prematurity. In that respect the CP analogy is apt: it doesn't get outgrown, but if mild and in some people, compensation is possible.



It's not that black and white. Being able to function occupationally doesn't mean *no* support is needed.



Again, the end of your post, I agree with.

~Kate

you are laboring under a misapprehension i think.

i said that "i can not situate my consciousness in any other world but my my own".

i did not say that no one else can situate their consciousness in my mind.

i do think things, and i say them, and sometimes others understand what i say.

i mean that i can not identify with other people because i can not receive what ever "vibe" is necessary to feel the same way as they feel about what they say to me.

i did not mean that i have nothing to say, or that i do not try to communicate what i think to others.

often people hear what i say and they say they understand, and then they report their own translation of what they think i said, and i do not see what they mean or feel, even though it is apparently a direct translation from their minds of what they thought i said.

they may be right. they may be wrong. i do not know.

i can shut my eyes and talk to the world, but i can not listen with much understanding


i am not profoundly autistic.
i am very autistic, but i have a reasonably good brain and i have learned how to say what i think.
i have not as good a capacity to dissemble what others say, and i almost never identify with other peoples words to me.
i understand instruction and narrative, but i do not understand the emotional quality of others.

you mentioned my girlfriends. they are all emotionally erratic and dysfunctional and they take solace in my inability to be emotionally aware. they wish they also were "emotionally quadruplegic" (as one of them described), and it is mainly that quality in me that they seek. they are entertained by me in a cerebral fashion, and they take a holiday from their emotionally tempestuous boyfriends by being in my company.

i am sterile in that sense and they eventually crave the passion that they escaped from, and return to their normal boyfriends.

i have one long term girlfriend, and she is mentally handicapped and she likes the fact that i make no emotional demands from her and she feels safe from rejection by me because i do not subjectively perceive her emotional deficit.

my world is simple but very complicated to describe, and you should not get swept up in the wake of the few words i say on this site. i have not bothered to describe in any detail the mechanics of my life, so you should not be capsized by what you imagine about me after filling in the blanks.

and i do not understand why you are even interested in what i said really.

i have not said enough seriously about myself for you to have any idea of who i am, so it would be well for you to return your attention to the other posters thanks.

p.s i know i used the word "conscience" in my previous post but i meant "consciousness".
bye

i have to pick my kid up in 2 mins so dont have time to respond to everything right now but one issue for me aside from the bath taking discomfort ( sore skin after ) towels being damp and worst of all the putting on of clean clothes , it took me years to get over this and i will confess i change my t shirt in the morning because i cant stand to put a fresh one on at night , if i do that i just cannot get to sleep. i need that worn for a while feeling to be very comfy. i guess it doesnt help public perception of me as all of my t shirts jeans and jumpers are the same , i hate to buy something new because it will never be as comfy as my old worn out t shirts which i bought from a whole sale company , i have 2 colours black and purple and have 20 of each . 5 pairs of jeans all the same too.

will reply to other posts when i get home .

Yes, there are. I'm in the process of getting my diagnosis that way. Basically, they diagnose you, and if you are found to have ASD, then you're included in the study. If not, you're basically part of the control group. However, my diagnosis won't be valid for anything outside of the study. In other words, I won't be able to use it to apply for social services or anything like that. I'm alright with that, because I think that at 33, I'm as adapted as I'm going to get.

You're not the only one, natty; I've got eight black pants of the same style, and eight shirts of different colors but the same style, and wear them in rotation. They're starting to get a little worn and I'm worried about where I'll find something else similar, because stores are forever discontinuing kinds of clothing. The shirts are already discontinued, and I had trouble finding the pants last time I needed a new pair. I dread having to go and try out a million things until something feels right, but it'll have to be done eventually.

Showers used to cause me a great deal of trouble; not so much now, as I've gotten somewhat used to them, and because I've learned how to take less than an hour. I used to be stinky. It took a while to learn, but I did. I can't very well assume that people who are stinky are doing it just to annoy other people, because I was oblivious for a long time, then just too tired and disorganized for some time after that. Really, though, once you know about it (and know it's possible to fix it), it's an important thing to learn.

Nonetheless, you went through a 'vetting process, ostensibly the same you would for a non-research diagnosis. The fact that it can't be used for disability or other things is purely bureaucratic, and in no way is the same as someone with no assessment/'vetting' but a "self-diagnosis" being included in a study as an autistic subject.

Unless you are saying that the research assessment was done in an insufficient or shoddy manner.

Oh, yes, I've heard that all my life. On occasion I act so well that people who aren't really paying attention can't see any problem. I'm good at emulating things. I have a sense of humor, and can imitate just about anything, especially accents and movie lines. Only if i'm in the right mood. But it's easy for things to fall apart. One minute I can sound like a capable educated person, and the next I feel like a 6 year old. To actually communicate what I'm really feeling, people don't seem to understand it, and talking makes me tired after a while. So I resort of imitating movie lines and making jokes.

As I get older, it's becoming more difficult to navigate the twists and turns and the tightropes of life. I'm also more detached emotionally because there's been so much to detach from. Well, there it is.

Seems to me that this entity that makes us the way we are, is there, in varying degrees and us humans are trying to make sense of it. The doctors don't understand it, either. If you feel that the symptoms resonate with you and suddenly things seem to make perfect sense, then so be it. People rely too much on 'the doctor says this and that'.

Yes, it's important if you need an official diagnosis to get a particular kind of help such as for school or for job training, or applying for aid, but if you are an adult who is just looking for some understanding from like-minded people, and you want to make sense of some things from your childhood or learn how to explain things to a friend or spouse, then self diagnosis is good, too.

I don't have a problem with self diagnosed people. If nothing was wrong with their ability to function in society, then they wouldn't be bothering with any of this, or participating in WP or similar support groups would they?

I'm self-dxed because:

1. It's next to impossible for me to go and see a specialist on my own because I'm 15
2. My parents don't know what an ASD is and I am often scolded for having Aspie traits
3. I can lie to people straight in the face because I don't make eye contact, so I can lie to my parents about being social with ease
4. I've learnt to adapt to social situations by using other people's words, echoing what people say (I have learnt that people like me to agree with them, so this works extremely well), scripting, forcing eye contact etc.

The only time when I tell people about my traits are when I'm on this forum. I don't use the possibility of me having AS as an excuse for anything. No one I know in real life knows about this, so I'm just marked as slightly quirky. Sometimes it's good. For example, I'm not overly concerned about hygiene, so during camps when people want to wash their hair and condition it and are miserable because the water is freezing cold and they can't get all the shampoo/conditioner out, I just splash water on myself and call it a day. But sometimes I do suffer because I'm quite hypersensitive so small noises distract me and certain smells make me feel nauseous (e.g.: the smell of lipstick). I've learnt to just grit my teeth and get on with real life, and I personally don't think that a dx will change anything for me. I might even suffer more if I get one, so I may as well leave my life the way it is now.

This is very true. As a 16 year old at the time, I was misdiagnosed as having bi-polar because many of my behaviors were seen as being very similar to those with the disorder, but my alexithymia was taken as emptiness/loneliness instead of an inability to process certain things. When asked how I felt, I responded with "I don't know" eventually frustrating me greatly. The only way I can get around it is to write down/type out every thought that enters my mind as soon as it occurs and summarize what I'm trying to say by piecing together the important parts. It's also much easier for me to explain myself when I give myself a considerable amount of time to jot these things down rather than go for an explanation quickly. At any rate, I felt something wasn't right when I felt no changes from all of the medications I was taking. I had gone through combinations of depakote, seroquil, paxil, atavin, lithium carbonate, geodon to no avail, only bad side effects such as random blackouts and massive breakouts of hives on my body.

At the time though I thought my uncle (on my mother's side of the family) just suffered from obsessive-compulsive disorder instead of having AS, and although I knew my brother was autistic, I just assumed it was some form of a mental handicap. I didn't realize that he had AS, or that AS even existed. So I wasn't able to give a proper family history either. I didn't even know much about them until around a few years ago.

I think a large part of the problem is most of society isn't properly educated correctly on autism and AS, and how those things affect people; not so much as to who considers themselves to have AS and who has it documented on paper. Personally, having AS isn't something that I would readily let people know about myself. I want to be seen as regular, not irregular. Outside of speaking about the subject with a handful of people that I know after I found out about having it, I don't even like discussing the matter with people.