Problems with self-diagnostic tests

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PrivateEyes
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17 Jul 2011, 8:34 am

Tuttle wrote:

PrivateEyes wrote:

Well that's the issue here and why I addressed this post to the older pre-Asperger syndrome crowd, because I think there's a different dynamic going on with different generations. I think I can speak for the older folks here - 45+ that when we were growing up there was less (if at all) cliques for people who were different. If you were in a clique it was a clique of the popular and "normal" people. Those who were different were generally on their own and ostracized. I say "generally" because that wasn't always the case; but certainly nowadays it's easier for a person who is "geeky" or just doesn't "fit in" to,,,well, fit in.

But even talking about it in terms of generations, that's a huge stereotype to be making. It was not /until/ college that /any/ of us saw the ability to fit in, that's exactly /why/ there started being the "I want to be an aspie too". And I've heard older (including 50+) people have similar situations when they went to college, where they suddenly went from the one who was weird and geeky to someone who fit in, because there were other weird and geeky students there for once. In fact, the club that is exactly this clique that I associated with in college has existed since 1974, so 55 year olds actually did involve themselves in actually /the same group that I involved with.

But really, it was a transition shock - these people went from being ostracized and teased constantly for being geeky up through getting to college, and then suddenly there were people, aspies even, who treated them decently. They wanted to be part of the group.

nemorosa wrote:

How very kind of you.

Perhaps the best position to take is that self-diagnosis is nobody's business except to the person doing the self-diagnosis. Haven't people got anything better to do?

How is it not my business when they do no research, tell me how much they know more than me, and start discrediting /my/ research into the subject because "they're older thus know more about aspergers because they're aspies".

Like I said, as long as people research, then self-diagnosising is /good/.

The problem is when people don't and only mindlessly look at tests that they /are/ being biased about, then they can actually do harm to both themselves and the people who are aspies, whether self-diagnosed or not.
Themselves, because of trying to treat themselves for something they neither have nor have any idea about because they didn't want to bother researching it because they know better than the "experts".
Aspies, because they're now being told how much more 'normal' they should be, and how wrong they are, because look, this person is an aspie too and they know how to function in normal society, why don't you? They literally did a lot of damage to someone I knew because of this, and only now, at least 4 years later, is he starting to come back out of the shell they pushed him into.

I'm not talking about every case of self-diagnosing. I'm talking about the problems that someone in their early 20s has seen from self-diagnosed people who /didn't/ research anything, because that's how they were using the AQ-test.

If someone self-diagnoses and doesn't harm /me/ or a close friend of mine because of it, then its their business. When they do start hurting me, then it becomes my business too if it is because of the identifying as an aspie that they are harming me.

(My background, I self-diagnosed between the age of 12 and 15, read a lot about aspergers, joined here in 2006 when I was going to college and things were changing for me, for the first year of college identified as an aspie, was treated so terribly through other people who had self-"diagnosed" without any research that I stopped identifying as an aspie though remained "not-neurotypical", and then last week at age 22 was given an official diagnosis.)

I don't expect many people even my age, to have had this experience. I'm however sharing what difficulties because of the self-diagnostic tests I have personally encountered. I do feel that as a whole they help more than hurt, and don't think that official diagnoses are always worth the money that they tend to charge when self-diagnosing works so well. That doesn't mean that problems don't come up and don't need to be acknowledged.

I'm not trying to stereotype anyone when I compare generations. Times are different because now there's a definition for the condition. Back then (pre 1980s) there wasn't. People were left with no answers and no help. So i fail to see how I've stereotyped anybody. I was just talking about different times and different dynamics with the same type of people.

I like what you said about how self-diagnosed Aspies can cause unintentional harm. I have to stress "unintentional" though as perhaps what's really needed is more education. The burden of education is not anyone's responsibility but the person who needs educating, and I think you alluded to this, but there could be some more awareness presented in society. This website and others are doing a pretty good job with that, but you know there's differing views everywhere; so people will go with what sounds reasonable to them; sometimes without considering alternatives. That's just the way it is, unfortunately.

I'd like to see the media get involved with some kind of comparison with people who obviously have the symptoms and are diagnosed, people who have the symptoms and are not,, and people who don't have the symptoms but are self-diagnosed. Some news magazine or show could do a piece on that just to inform people where they can get further information, and that could have quite an impact if it's done right and it comes from a major source. But overall, people in the business of treatment and diagnosing should be well aware of these issues. I'm sure some are; while perhaps some need to become more aware. Having worked in mental health I can tell you that there are people in the field who don't have a clue, and sometimes they are the ones setting norms for others to follow; which is unfortunate.

Tuttle
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17 Jul 2011, 11:55 am

PrivateEyes wrote:

I think that was just a misunderstanding between us - I think you were assuming I was talking about an aspie club, rather than a club that happened to attract aspies as well as other social misfits, while I was taking your words as saying that there weren't social groups for social misfits in 1974, when I could name one of them off the top of my head, because we've always been that club.

PrivateEyes wrote:

I like what you said about how self-diagnosed Aspies can cause unintentional harm. I have to stress "unintentional" though as perhaps what's really needed is more education. The burden of education is not anyone's responsibility but the person who needs educating, and I think you alluded to this, but there could be some more awareness presented in society. This website and others are doing a pretty good job with that, but you know there's differing views everywhere; so people will go with what sounds reasonable to them; sometimes without considering alternatives. That's just the way it is, unfortunately.

Yeah, there's no question that its unintentional, but at the same time there is no question that its harm. Some of the people I interacted with in that, actually were willing to go and do more research, some weren't and ended up making me uncomfortable identifying as on the spectrum because of not having an official diagnosis, and deciding that it was necessary to identify such that I wasn't accidentally doing the same to others.

If there was an easy way to educate people who start identifying as aspies, both who do fit the symptoms, and those who don't, without it making them felt pushed out it'd be nice. Educating society is also good. Generally there should be a lot more knowledge about the autistic spectrum that isn't negative stereotypes.

TalusJumper
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17 Jul 2011, 11:59 am

Interesting topic- I appreciate reading all the points of view here.

For me, to sum it up as simple as possible, I am 45 and have never really fit in anywhere. Not low enough functioning to require any assistance, but not socially high functioning enough to fit in. I would like to find others that I actually can relate to- I have found it through people with Asperger's Syndrome because I can relate fully.

The last 12 years I have researched, taken multiple on-line tests (as honestly as possible) and followed others with AS enough to be convinced that I did self-diagnose myself. I recently spend A LOT of money to be diagnosed by a 'professional' and they came up PDD-NOS. I don't fully agree with the results of the report but I guess I have to accept it anyways. Due to the vagueness and subjectivity associated with autism testing, I am now convinced the only way to get a fully comprehensive diagnosis is to see multiple professionals as it comes down to a matter of opinion to where a person is on the spectrum. Unfortunately, this is very difficult and impossible for most (myself included) due to the time and expense involved.

aspi-rant
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17 Jul 2011, 12:09 pm

the only one cheated by manipulating the answers of an online test … is the one doing the test.

none of the online tests is certified and recognized as being the equivalent of a valid Dx…. so what is the point of cheating the test??

a selfDx could be the correct Dx… but it is not validated… so it is not of much use.

these tests are made to help people to find out if they should go for a real, valid potential Dx or not… they are guidelines. no more. no less.

PrivateEyes
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17 Jul 2011, 11:36 pm

aspi-rant wrote:

I totally agree. One observation though is that they are quite vague and some say quite emphatically in their conclusions that one is probably autistic. That's one problem. Why don't they just say something like this: "Based on the answers you've given about yourself, you may display traits that are common with people who have autism. This doesn't mean that you necessarily are autistic, but it might be an area that you could or should look into further. Here are some resources that might help..."

In other words, these tests should encourage people to look into the issue further and not come to their own conclusions. Some do, others do not.

That's not the only problem I have with them, but I do agree that they can be or in some cases, have a potential to be helpful. They shouldn't be considered conclusive one way or the other IMHO. I think from reading the posts here that most agree.

nemorosa
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18 Jul 2011, 7:06 am

PrivateEyes wrote:

In other words, these tests should encourage people to look into the issue further and not come to their own conclusions. Some do, others do not.

That's not the only problem I have with them, but I do agree that they can be or in some cases, have a potential to be helpful. They shouldn't be considered conclusive one way or the other IMHO. I think from reading the posts here that most agree.

I'm curious; did you really believe that anyone considered these on-line tests conclusive one way or the other?

I'm known for my generally low opinions of others but even I thought it was self-evident that these tests were only a useful pointer and that nobody in their right mind would base their own self-diagnosis just on the basis of one of these tests.

Surreal
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18 Jul 2011, 9:44 am

PrivateEyes wrote:

SammichEater wrote:

One online ASD test cannot determine whether one is autistic or not.

But, after several months of being obsessed with AS, analyzing every detail of my life and comparing it to what I've been reading here, I think it's safe to say that I have accurately diagnosed myself. In fact, I'm probably a whole lot more autistic than I think I am.

You want to join Another 1, Surreal and me in the corner booth and maybe we can talk about it?

I'll join in...but ONLY if my back is against the wall and I'm next to the window or wall

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MrXxx
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18 Jul 2011, 11:20 am

I don't see the problem. Anyone with enough knowledge of any disorder can cheat on any of these kinds of tests. So what?

What good does it do to cheat on them? The whole purpose of these things is to help people figure out whether to bother looking further into it. If people cheat in them intentionally, they know they're doing it, so they also know cheating isn't really helping them at all.

The real problem is when one thinks ones behaviors are actually perfectly normal, and respond as if they are. And I've found from experience the online test tend to catch Aspie tendencies if this is true. Even though i considered a lot of my traits to be perfectly normal, the online self testing ALWAYS returned, "You most likely have Asperger Syndrome."

So what's the "real problem" I'm talking about?

The real problem, if you think all your traits are normal, is that the REAL evaluations you fill out probably WON'T find that you have Asperger Syndrome.

I know this because my wife and I filled out several evaluation forms for a couple of our sons before they reached the ages of seven and ten. Not one of them came back positive. Guess why?

Because I have AS, didn't know at the time, and was filling them out from the perspective of someone who didn't have it. I thought most of the questions were stupid, poorly worded, and dumb things to ask.

"What the? What kid DOESN'T do this? What kid DOESN'T do that?"

The results were, because I thought all the stuff they were asking about was perfectly average and normal, that my kids didn't get diagnosed for years.

One day, the school psychologist came to us and told us (totally unaware that we had ever looked into it), "Your two youngest sons are ASD. One has AS, the other has PDD-NOS."

Our jaws dropped. It was sometime after pondering for a while how it could have been missed for so long in spite of all the forms we had filled out, that it dawned on me that if I had AS, all the stuff on the forms WOULD seem normal to me.

Long story short, I took some online tests. They ALL came out solidly positive, and later I was diagnosed myself.

Now, our eldest son was one of the two we originally thought had AS, and he still was not diagnosed with anything but ADHD, so we pushed the shcools to RE-evaluate him in eighth grade.

This time when we filled out the forms, our perspective was totally different. This time, we actually did what the OP described, but with the actual evaluation forms. Our attitude this time was, "Lets not give them any excuse for not catching this." I remember mentioning to my wife that they probably have computer programs that "red flag" any forms that come back TOO positive.

Well, it's true. They do have programs that do that, and ours came back with red flags. So did the forms his para filled out. The flags were supposedly serious enough that the school psychologist then had his case manager fill out another set of forms. Our forums scaled at around 95%. The para's was about the same, but higher than ours. The case manager's came back in the high 80's.

Conclusion? The same psychologist that found him at around 8-12% just three years before, and would not diagnose him as ASD, changed his mind.

I don't see the problem too much with "cheating." Yeah people can cheat on the online tests, but who are they really cheating? Themselves, of course! They're not really cheating anyone else, because nobody keeps statistics on those things. There are carefully designed catches in place for anyone trying to manipulate the real tests, and they work pretty darned well, except in one case.

The real deals don't work well at all if the person filling them out has AS, and doesn't know it or even suspect it.

The worst that can happen with the online self testing is that people who either intentionally cheat or subconsciously cheat, start identifying themselves as Aspie when they really aren't. I don't see that as a huge problem. If I'm going to deal with anyone seriously, like offering advice, who says their Aspie, I ALWAYS dig deeper to find out how they know.

Were you diagnosed?
If not, how do you know?

Most of the time, the advice people ask for isn't "Aspie dependent" anyway. In other words, the advice they're looking for would be the same whether they have Asperger's or not. In the rare cases that it does matter, I ask a lot more questions. If I don't think they really have it, I'll back out of the advice thing. Depending on the situation, I might even tell them I don't think they really have it.

But, I've found the need to do so quite rare.

If it weren't for the online tests, I would never have started looking at myself, and my eldest son would not have been diagnosed.

I think the value FAR outweighs the problems with them.

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Surreal
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18 Jul 2011, 3:38 pm

Oh I believe that the undiagnosed who takes the test yielding a positive result - yet who comes here and finds little to no identification might want to rethink his or her reason for thinking s/he has an ASD.

OTOH, a person who takes the test(s) and gets a positive result and then finds a level of identification heretofore unseen in his/her life MIGHT have a reason for following up. The level of identification will show up in postings and such.

I realize that it looks and sounds like I've put myself on that pedestal, but my postings are just gut-level, butt-naked honest. I have some real-life experience along the lines of what is talked about in these threads. Now that alone does NOT an ASD diagnosis make. But so far, I have yet to find anything else that fits as well! Not that I want it to; it just is what it is. And I have looked elsewhere!

MrXxx
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18 Jul 2011, 3:54 pm

Surreal wrote:

But so far, I have yet to find anything else that fits as well! Not that I want it to; it just is what it is. And I have looked elsewhere!

That's important. "I HAVE looked elsewhere." When nothing else fits and AS explains so much, AS is more than likely what it is.

When I first came here, i was "self diagnosed," but I never hid that fact. During the first several months I was here, I got the distinct impression there were quire a few here who did not take me seriously simply because all I had to go on was my own research and several on line screenings.

At some point, after seeing quite a string of threads about how self diagnosed Aspies are "fakes" and other such things, I posted my own thread "I want to like you people" about how unwelcome those types of threads made me feel. I got a lot of support, but I also got a lot of slamming for it.

I asked how people who were currently saying I was a fake, would feel once I was diagnosed. Most said, something like "Fine. For now, your a fake. Come back when your diagnosed, Then, you won't be."

How that jives with the fact that AS is not something one develops, and the fact that you are either born AS or not, and a diagnosis would pretty much prove that I WAS already AS, is beyond me, and even though I brought that up, those that were calling me a fake didn't seem to care.

Yeah, well, now I AM diagnosed,

So to all you people who insisted I was just a fake:

IN YER FACE!

Too late to make nice now. :twisted:

Verdandi
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18 Jul 2011, 4:10 pm

The first time I took the AQ I answered with things I believed were true, rather than things that were true, and scored fairly low on it. When I took the Aspie Quiz, I scored something like 146 Aspie, 60-ish NT. The questions in the latter make more sense than the former - when I went back to the former, I scored in the upper 30s.

I never decided I was AS based on tests, though, but I did find them to be informative.

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