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

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There seems to be a pervasive attitude that people are all over the internet self-diagnosing themselves with AS or Autism. This tends to diminish the credibility of honest-to-god diagnosees.

See, the problem some NTs have is that some people have social awkwardness or "odious interpersonal habits" and they see it as a deliberate thing and when someone says they have AS (either self-diagnosed or otherwise) they say, "Stop using that as an excuse" as if the people have any sort of control over it.

Where are all these self-diagnoseds that are making NTs think that AS has a bad name/reputation? Why do NTs think that they can judge a person like that, after all THEY are not experts and don't any more know what a person's problem is than the person would.

Are people REALLY just 'using AS as an excuse' and what does that mean? Does that mean AS people are doing something deliberately? Why on earth would someone who's NOT diagnosed as AS (though might be, regardless) deliberately be using odious interpersonal habits and then saying "Don't blame me I have AS"? Does that even make sense for a person to do?

Whether or not a person IS AS diagnosed, my belief is that if they can't help it, they can't help it. Why don't NTs GET that?!

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.

I don't think people who are self-diagnosed 'ruin' it for those with a diagnosis. I think people who claim to have AS and sit back and do nothing about it give the rest of us a bad name.

Last edited by Lene on 29 Mar 2010, 9:47 pm, edited 1 time in total.

I don't think they were talking about actual hygiene, they were talking about behaviors. Especially since people who are online can't smell the person they're talking to.



Well, that's iffy if a) the person is poor and treatment is expensive or b) there is no treatment in an area the person has access to. I was basically told by the person that diagnosed me that there is NOTHING they can do for me. I contacted an expert in childhood autism and that person told me that adults are way out of their league.

Well, where did they observe these behaviours? You can't tell someone has AS on the internet unless they tell you, so I'm guessing they must have observed some of them in real life
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When I said 'do something about it' I meant by working at social skills etc. You don't need to spend a fortune on expensive treatment to learn the basics, and you can always borrow a book on the topic from your library if you can't afford to buy one.

YES! YES! YES!

And if you're so clueless that you don't even know where to start?

No, some people do need outside help. And most will learn faster with than without it.

Nope, no RL involved at all. This is all over text on the internet. People interpret 'odious behaviors' from text and then get mad at people, and then some of the people are like WTF I didn't know, I have AS. And then the person who got mad in the first place gets madder because they think that whatever it was should have been obvious. Well, OBVIOUSLY NOT.




Yeah books are fine and all...but they're no substitute for an actual person telling you things in an interactive way.

Last edited by Shebakoby on 29 Mar 2010, 10:10 pm, edited 1 time in total.

Some aspies do use it as an excuse; some are deliberately rude, some refuse to take responsibility over their actions, some don't even want to try to work on their traits. Instead they want everyone to bend to their rules and have everything evolve around them. Because they do these things, people assume we are using it as an excuse when we tell them we have it.

I don't like those aspies, it's a disservice to us all.

How can anybody prove whether someone's being deliberately rude?

I have no idea. But it's a problem about ignorance. Lot of people can't tell the difference. But I can. I am sure sometimes I can't tell.

I've got no quarrel with the self diagnosers. It is very hard for some people to get diagnosed, either there's no ASD specialists nearby or they are mild enough to not be diagnosed.
It is also misdiagnosed and overdiagnosed. We have people coming in here asking if they have AS because of some very few symptoms. Doctors don't always diagnose from the DSM IV. Sometimes they see a person for an hour and *poof* they are diagnosed without giving any clear evidence. That is just one example.
There are some people that self diagnose that do a lot of research on ASD. I was doing the same thing before I was diagnosed.

It's the people that use it as a excuse that would be ruining it for us. If anyone told me I was using AS as an excuse I would punch them out. I try to do things like be social but it's so very difficult and it ends up making me angry or depressed. So if anyone didn't believe me I'd stop all communication with them.

I don't think so. Everybody has a right to be here.

I don't mean 'here'. I mean, in general, in life. As in, are the self-diagnosers putting forth a false idea to NTs about what people who say they have AS are all about.

I think that some people are seeing standard disability-related prejudice, and are finding it somehow surprising. IOW, that such a thing as that could never happen in the world unless someone -- some boogeyman (un'dx'ed people) -- wasn't doing something wrong to cause it.

Society is always thinking that people are looking for excuses -- no label is really accepted. It's always, "you're using your autism/ADHD/epilepsy/schizophrenia/heart condition/kidney failure/whatever as an excuse!" So I think people being worried about an army of fakers ruining it for the 'real' autistics, is just a result of internalizing how society views disabled people in the first place.

The prejudice has always been there; the unfairness was always there, it just wasn't noticed by some people until they had a label and met it first-person. IMO, anyway.

Well, I sincerely hope not. Yes, I am semi-selfdiagnosed - semi because almost immediately recognized by a therapist with an adult autistic offspring [who only today commented that one og my behaviors was totally Aspie. And yes, I have been accused, by my highly resentful younger brother, of using Asperger's to excuse my behavior. Thing is, I am not in the least trying to excuse behaviors, not even ones he finds inexcusable, and the list of people who even know about it is very short and unlikely to grow significantly.

Yes, I am gratified to find tentative explanations that are a better fit to my ways of being than anything else, and no, no matter how I have tried ovver the years I am not about to fit in enough to fool anybody. But I believe I can say that my traits over several decades have done very little injury to anybody but me, and I very much doubt that my intellectual satisfaction with the asperger hypothesis has any measurable impact on the diagnosed.

And for that matter, increasingly I would be willing to bet that if it had been possible for my mother to have my preschool bahavior evaluated in 2000 instead of around 1950 I WOULD be among the diagnosed.

Self-identification is fine with me, and knowing so many self-identified people I hate watching people treat them like crap and making them nervous about saying they're autistic. Really hate that.

And as for people using it as an excuse, I think that line is more often than not used as an excuse to behave in extremely nasty ways to autistic people. And I think the rumor that there were all these self-diagnosed people out there using autism as an excuse was made up by nonautistic people who didn't want to be held responsible for being nasty to us. Then some autistic people believed the rumor and started doing some really odious identity policing.

I went into more detail in this post.

I have met people who used it as an excuse but it's a teeny tiny number of people and you have to know someone extremely well before you can say that. But their existence does not make this stereotype okay. Oh and the worst two I ever met were professionally diagnosed in early childhood.

As for the thing someone on this thread said about how all you need to know is what you're doing wrong and then it's easy... on what planet?

I mean yes I get that there are autistic people out there whose only reason for doing something wrong is they didn't know. I know that in theory, I've known people like that, I know they exist.

But it's not true of everyone. And I find it really offensive when people generalize like that.

So hygiene is easy? I have never in my life been capable of cleaning myself properly, and even the crappy job that I could do? I couldn't just get in the shower because I felt like it, I needed someone to do anything from verbally prompt me to physically lead me there.

I mean, what's hard there? Everything.

The ability to go where you want to go.

The ability to easily cross the sort of threshold lines that a shower has.

The ability to remember the instructions on how to bathe.

The ability to sequence the steps.

The ability to not get confused by the physical sensations of putting soap on etc.

The ability to do everything while juggling soap and trying to stand upright in a place where there us loud water pelting you all over.

And there are similarly difficult steps for every other kind of getting clean.

So if you can do that? Wonderful, good for you, whatever. But don't assume everyone else finds all that easy or possible. At my best I couldn't shower unless someone helped me start off and then I'd stay in there fiddling with the soap and water for awhile before coming out. That means when I went to college I can count the number of showers on one hand and someone else prompted me on every single one of them. I didn't like the way I smelled either but good grief just knowing isn't enough.

Remember that for many autistic people there are:

Problems going from thought to action.

Trouble with deliberate recall or with recalling knowledge at the right time. M

Trouble with sensory aversions.

Trouble with overload causing skills to vanish.

Trouble with understanding words, or using words.

Trouble understanding aspects of our surroundings.

Trouble applying knowledge.

Involuntary sounds and movements.

Trouble finding our bodies at all.

And much, much more. For most people autism is a whole lot more than just not knowing things. And to hear people call it an "excuse" when people can't just go "oh now I know so everything is better forevermore", just, grr.