Problems with self-diagnostic tests

Post Reply New Topic

This is more directed to the older population here.

The problem with a lot of these tests is that it is easy to cheat them one way or another if you are aware of the diagnostic criteria for Asperger's syndrome, and you're certain that you have it, or you don't want to have it. If you're certain you have it and are not bothered by the fact, I think you're more likely to force yourself to score low, even though you might have actually more strengths in areas you're aware of.

I think taking an all around test on these things can therefore be deceptive.

I scored very low, for example (12) in the EQ and very high (65) in the SQ. I worked in a field where empathy skills are really necessary. Also, I'm a very disorganized person with my personal life, but I like certain order in some areas and I get irritated when order is absent, so not all of the questions are necessary applicable or indicative of strength or weakness.

I would like to see a test that is more indicative of disfunction - such as being concerned with order, but not really having the ability to order one's life, or being aware of other's emotions, but being insensitive to them. That would make more sense to me and be much more applicable to my difficulties, as I'm sure it would with others.

Another thing that doesn't seem to be taken into account in a lot of these tests is life experiences and how we've changed over time. I'[m now almost 50 and I don't have a problem with eye contact anymore, for example, while as a child I never made eye contact. A more appropriate question regarding eye contact would thus be: "do you or have you ever had difficulty with eye contact, or have you had to train yourself to maintain eye contact with others?" A test that considers these issues, I think would be much more applicable and useful.

Bottom line is I don't think a person can accurately self-diagnose even with these tests available. That a person believes they fit the diagnostic criteria is perhaps a good starting point, but I think once that curiosity is settled, it should then be left to a clinician. I think a keen clinician will be able to pick out these subtleties and consider the whole person from their history and their current abilities and difficulties. They would also be able to remain more neutral. I honestly can't say that I can remain neutral in evaluating myself with these tests. I'm persuaded that I have Asperger's based on the diagnostic criteria, but not every area applies to me. I can be empathetic, and I'm terribly disorganized, while I'm often irritated by disorder. I'm not bothered by variations in temperature - probably because of my experience with living in very hot climates at one time and very cold climates at other times, so those types of questions certainly are a bit awkward. I adapt easily because of my life experiences. I had to adapt. Maybe if I remained in the same climate all my life I might be a bit more sensitive to changes in temperature, but these tests don't seem to consider those issues.

I think the worst test of all was the emotional IQ test using photos of people. There are so many variables in how people are feeling, and people can manipulate their own facial expressions such that how they actually feel is not what they are expressing. This test might be more applicable with younger people, but certainly not with people who have had to work and deal with people for many years. Even if we do have Asperger's we should be able to pick up on peoples' general emotional states while perhaps not knowing subtle details, simply because we can add that to our life experience. That we are better able to do so is not indicative that we don't still have problems in socialization as a residual effect from more acute symptoms from our youth. It's difficult to overcome a lot of socialization problems, while we still might have strengths in at least recognizing where these problems lie. Some of us would not be able to recognize them as problems if we remained completely unaware of how people express emotions. So I really think that test is bogus. It might only indicate that we don't do well doing these kinds of tests. I did fairly well on the test, but I still have trouble relating how people feel about things. Some of the questions have more to do with logic than empathy. If someone is smiling, they're happy. Logic tells me that. It doesn't indicate that I might not still have difficulty in real life situations dealing with people's emotional states, or picking up on whether or not they're interested in what I say.

Other issues that aren't covered by these tests is the types of relationships we had with significant others. Did we have strict and overbearing or abusive parents, or easy-going non-judgmental or ineffective parents? These issues should certainly be asked in any diagnostic procedure, because maybe a child who was abused has these symptoms because of the abuse and not necessarily because of some brain abnormality.

If you disagree, sorry. Just my thoughts.

I absolutely agree.
Some of those simple one liner multiple choice questions leave no wiggle room.
I think alot of those tests are just to give you an idea.

Incidently the only problem in all that, is that clinicians are usually too rushed nowadays to give a cough and a hairball to spending the required time with an individual - if we don't go in with an IDEA of what might be wrong with us, there's a good chance it will be overlooked due to time constraints... and them being too busy with their own personal agenda.

<splurt>

Yeah, that's my experience too. I think the problem is that I've been going to the wrong clinicians. I think we owe it to ourselves to carefully seek out those with expertise. I don't think most psychiatrists are competent in that area. They are more likely to prescribe medications for certain symptoms while overlooking the overall person. That's why I haven't been properly diagnosed myself, and I'm seeking someone in my area who knows these issues.

So, you're saying that it's possible to cheat on the tests if you know in advance what the answers are "supposed" to be? Not an earthshaking revelation.

I may be mistaken, but I think that a lot of people find and take these tests early in their investigations into ASDs. If this is the case, then their test results are likely to be pretty accurate. I found and took most of the tests in the "Set of scientific tests related to Autism Spectrum Disorders" thread within two or three days of beginning my "research," and found many of the questions confusing: "WTF does that have to do with anything?" If I hadn't taken them until six months later, I would have understood what they were looking for, and could have tailored my responses to arrive at a desired result.

HOWEVER! If one is able to approach the test honestly, knowing what they are looking for may help achieve a more accurate score. For example, most of those tests ask questions about stimming. Since I neither understood what "stimming" was nor had the specific behaviors mentioned, I answered "no" on those questions. Now that I know what they are looking for, I would answer "yes," because, while I don't have those exact behaviors, I have others which fit the general category of "stimming," which is what they really want to know about.

Hmm, I'm not sure those of us who self-diagnose are relying too much on the on-line tests as an indicator.

And frankly I think it's a mistake to have too much faith in the "Professionals". One psychiatrist I saw became obsessed with my fathers influence in my life. When that little theory didn't pan out he then said Anankastic Personality Disorder was a good match, despite me telling him it wasn't a good match and nor did it take account of sensory and processing difficulties (which he didn't want to talk about). He also thought I couldn't possibly have Aspergers because I'd demonstrated I had feelings for my partner and children

His last guess was Pervasive developmental disorder before I stopped seeing him. Now fighting my way through the NHS bureaucracy to get to somebody competent.

Yeah. I got one guy saw me twice for 15 minutes each
At the end of the second session he said "No Asperger's."
I surprised myself by asking why he'd say that.
him: "You don't have the physical symptoms"
I asked: "Physical Symptoms?"
him: "Certain things we look for"
I asked: "Well what DO I have?"
Him: "Maybe a learning disorder or something. Best of luck."

(this was a guy who - I kid you not - spent most of the second interview plucking at his nose and investigating his fingertips)

I actually stopped coming here after that because I feared I'd be unwelcome.
Just recently came back.
It's good to be back.
I feel like I'm with my people.
The "professionals" can be more destructive than beneficial.

I fit in here because I share a good number of the experiences and challenges expressed here.
Official or not, being here improves my quality of life, explains a lot of confusions, and often helps me deal with daily issues and sometimes self doubt - and grants me alot of insight. Between my own intellect, my own ability to puzzle solve, my extensive research, and my brutal self honesty... and "wow thats me" moments...

^$#% the professionals.
I'm not arrogant, looking for a crutch, or any of the other things I've been accused of. I'm looking for an explination, data points, comprehension, a sense that I fit into humanity and am not stuggling with all my struggles on my own - that I'm not the only one to see and deal with (or have trouble with) the world in it the same way I do. I've found that here. It's like a big warm blanket. And the understanding I never got from my family. And a signpost. All at once.

I guess what I'm saying is:
Use the tests as a quick introduction. Treat it like the opening paragraph in an essay.
Then read the forums, talk to and expose yourself to other Aspies. And if you're honest about yourself, and you're expansive enough with your research, you'll know. You'll know.

Yes,I agree with much of what you're saying. But where we diverge I think you illustrate my point somewhat. I took the tests after I had written a very lengthy self assessment (diagnostic history, mannerisms, likes, dislikes, etc) for a clinician I'm seeking out. I thought that was necessary. I also wrote out contact information for family members, because I want whatever clinician I see to have more than just my perspective. And if they're not interested in reading that, at least I've written it out myself so it's fresh in my mind. So I had already done all the necessary research and self-assessment and written it down.

So WHEN one takes one of these tests is a crucial to the outcome. I already knew what the questions were driving at. This is why I addressed this post to the older population here, who might already be aware of the diagnostic criteria, and have done some research themselves. With that information in mind, it then becomes quite easy to force oneself into a particular category with these tests.

I was a bit more careful in answering "definitely" in choices of [definitely true, true, not true, definitely not true] or examples like that. In other words, with me there's "wiggle room" to quote the previous poster. But even at that, the tests don't offer alternatives to those very broad questions.

I have experience in mental health treatment and doing mental health assessments. At no time in my experience is a self-diagnostic test ever given to a patient to fill out on his/her own. Such assessments are done with the patient by the clinician (s), and there's several types of tests done by a whole spectrum of different clinicians from nurses, psychiatrists, psychologists, counselors, etc., in order to get a more accurate picture of what's going on. Also, mental health assessments are rarely only multiple choice or true/false formats. They might include that, but most often there's a narrative requirement so that the particulars are addressed.

But there are times when patients are given certain simple self-assessments, which are helpful in them understanding themselves, as a teaching tool. We don't use those kinds of informal self-assessments as a part of the patient's overall diagnostic or treatment assessment. Those remain separate.

But a problem I see overall with these tests is that a person could do quite well on them and then determine that what they initially thought regarding Asperger's is not true of them, and then they won't bother to go further and seek a professional diagnosis. For some this might be ok, but for others, it might not be. I'm not saying however that it might not be at all helpful in a person discovering that maybe they do have Asperger's. My only emphasis is that you really need the perspective of others in order to be more certain, and a person shouldn't rely on only their own perspective.

When I first mentioned to my sister that I think I have Asperger's syndrome she said: "Now don't go diagnosing yourself." This was when I was filling out the disability questionnaire I was required to fill out for my benefits. I think she was concerned that I would use whatever information I had gathered and include it in the questionnaire - which I didn't unless it related to the questions asked. But then she said "It's interesting though that people with Asperger's often develop long periods of depression and anxiety as adults," which indicated to me that she had done a little research on her own and agreed that this was an area I should pursue. She then told me before I filled out the questionnaire: "You need to make it very clear that your problems started when you were a kid, not when you first sought help for depression and anxiety as an adult."

The thing about the Asperger's diagnostic criteria is that it's very easy for a lay person to pick up on. It's not an issue of some blood abnormality that could mean a lot of different things that could only be determined by a doctor, or some sort of lesion that could have been caused by any number of things. With Asperger's the criteria seems to be very easily picked up by those who have it, so it's more likely that a person will be able to recognize the diagnosis as peculiar to them. I certainly recognized it right away as the most likely diagnosis for me, but I'm still not going to rely on my own perspective in that. For me it's important to be properly diagnosed, because I've had all these problems for a very long time, and I don't seem to be helped by the typical clinical practice of them giving me medications for the symptoms. For me it's much more pervasive - some of it due to my own chosen behavior and habits, and some due to situations beyond my control. I want to get the right diagnosis so I can get the right treatment and change those behaviors and habits that haven't helped me.

But ultimately another reason why I'm pursuing a diagnosis for myself is for the practical purposes of maintaining my disability benefits, as well as being able to tell future clinicians what's going on - making it easier to explain without having to go into enormous detail about all of my life experiences. I feel if I get properly diagnosed it will be easier for me to explain to people what's going on. I'm a "big picture" kind of person, and I'm not usually that interested in repeating all the fine details. I don't think these tests are as helpful as they could be in giving me or anyone else the "big picture."

I certainly agree. Other factors can affect how a person answers these questions, like mood and level of self-esteem. Sometimes it's hard to remember what you can and can't do; you remember the instances you couldn't do something more clearly, even though you might have done it right on many more occasions, or vice-versa.

They are not meant to be self-diagnostic tools anyway. They are to show you where, based on your own recollection, if you MAY fall near the spectrum (not that you DO fall on it). Then if people care to know further, they can go for a professional diagnosis which is far more in depth and elimates many of the problems you spoke of.

I'm seeking a diagnosis partly because I don't want to post here if I don't actually have it. (not to discredit what I've learned regardless of if I have it) Mostly because I wouldn't want to spread disinformation as someone who might not actually have it.

I think there is a lot of confusion for those of us with co-morbid disorders such as brain damage, add, dislexia or other things that might display some aspie like traits. The longer I go without a diagnosis with the knowledge of the existance of aspergers, the less I think I have it. Though this could be me just not as interested in the topic as I once was.

Honestly, I don't think we diverge very much at all. I think we're merely presenting two different sides of the same coin.

I fully agree that it is possible for a person who is knowledgeable about ASDs to easily skew the results of these tests, in whichever direction they prefer. I merely wanted to point out what you acknowledge in the second paragraph I quoted above - "WHEN one takes one of these tests is a crucial to the outcome."

I also agree that an informed, objective observer's input is needed to definitively confirm a self-diagnosis. That's why my profile status says that I "don't know if I have it or not." I feel probably 95% sure that Asperger's is the correct explanation for my particular brand of weirdness, but I could be wrong. I may be misunderstanding some of the phrasing in the criteria, or giving too much weight to certain traits, or overlooking something else that is a better explanation.

The last sentence I quoted is, almost word-for-word, what I told my therapist when I went in for an initial evaluation seeking a referral for a full evaluation for AS. I expanded by saying that, IF I have AS, it means my brain works differently, so interventions that don't take that into consideration wouldn't be effective. I only care about the label to the extent that it helps me get the RIGHT help for my issues.

Last but not least - I hadn't previously noticed your low post count, so please allow me to say: Welcome to The Planet!

*I hope you don't mind the edits. I'm not trying to skew the context or anything like that, just trying to avoid having each of our posts end up horrendously long! If you feel I've snipped out something important, please add it back in.

Good point. Your point sparks many issues that aren't directly related to the tests themselves, but to me seem symptomatic of a larger problem (I'm new here and haven't had the chance to talk to a lot of people on this forum, so if I'm missing something I do apologize; but this is the way I see what's happening):

What I see often is people who are saying that they have Asperger's, but haven't been officially diagnosed by a professional. This worries me somewhat because Asperger's then has a potential to become a self-identification like being gay, and then it becomes entirely useless as something that is contributory to other mental health difficulties. As you may be well aware, homosexuality used to be included as a mental health diagnosis until the early 1970s. It was rightly removed as a mental disorder back then. I don't believe that what we now call Asperger's is necessarily in that same category. While some people with Asperger's do quite well in life, for many it causes a lot of future mental health issues that aren't necessarily related to social stigma in the same way as homosexuality is. That may be part of it, but it's not the whole picture.

I don't have a problem with people self-identifying as Asperger's - I believe the majority who are doing so probably do have it; but I do worry that eventually there's going to be this trend where people are identifying with the diagnosis because of issues that don't really match the diagnostic criteria. Then it becomes simply a social movement for people who are different, and the people who are really having all the problems associated with the diagnosis are not being properly helped. This is why I'm not at all upset that the DSM-5 is going to eliminate Asperger's as a diagnosis. I think the people at the APA may be beginning to see this trend, such that the diagnosis has a potential to become meaningless. I'm not interested in being in a social group. I make my own friends who aren't all Aspies. What I'm interested in is that there still exists a diagnostic category for people who have very real problems in life and who need help. That's the real purpose behind diagnostic categories.

A lot of psychiatrists, quite frankly are not even interested in diagnoses per se. For them, giving a diagnosis is just a formality for billing purposes with insurance companies. They tend to focus more on treating symptoms and syndromes as they should be. It's the general public that reinforces the labels we often see such as "schizo," "psycho" or whatever. Diagnoses are only really important for the purposes of making sure that money spent on treatment is going to those who need such treatment and that the treatments are appropriate. In mental health the focus is not on diagnoses, but on treating behaviors and symptoms. The diagnoses of schizophrenia or Bipolar Disorder are sometimes helpful but ultimately the clinician is there to help a person improve their behavior so they can thrive and do so more independently. The diagnosis is necessary so that a clinician can demonstrate that he/she is using the appropriate treatment. That's pretty much it. So it doesn't matter whether it's called Asperger's or High Functioning Autism. What matters is that the person is getting the appropriate treatment. And particular treatments are not always dictated by a diagnosis. A psychiatrist doesn't automatically say "Oh, he's schizophrenic, he'll need this and that." No, such issues are determined by individual needs. Not every treatment works the same way with every individual who has the same diagnosis.

So do we want Asperger's because we identify with a particular social group who identify themselves as such, or do we want Asperger's because it's a category that specifically identifies people who may need help? I'm more concerned with the latter, and to me it doesn't matter what it's called as long as the help is available. It's also my belief that changing the name of the diagnosis has a potential of providing better and more treatment options. In California, some people with Asperger's are currently being denied benefits by the department of developmental services, because they are viewed as being able to function on their own. It has been my experience that this is not always the case. By moving Asperger's more inline directly with the Autism spectrum (all current ASDs in the same category), it will be more difficult for such agencies to make such a distinction based solely on diagnosis rather than on need. I came across families that had to sue the DDS in order to continue services for their sons or daughters with Asperger's. This kind of thing should not be happening. So we have to wonder whether this current rush to identify as an Aspie is having an effect on the lives of real people. We shouldn't take offense at this, just be concerned with the potential outcome. Most or at least many of us need help and we should be concerned when help is not available to all those who need it.

Thanks for the welcome. No problem about snipping. The OP should suffice for what I said.

You're still not seeing that the "professionals" are often not very professional, and that a diagnosis is merely an opinion, which may differ from that of another "professional". I'm not saying they are all bad, but many are due either to incompetence, inexperience or just a basic lack of understanding of what they are dealing with.



But even the diagnostic criteria used is open to question. Tony Attwood amongst others has said that the criteria excludes issues such as sensory and processing disorders.



Trust me, it's not going to be a popular social movement to join.

I am old enough that there was no such thing as an AS diagnosis when I was a kid and I agree with this.

Those online tests are ONLY an indicator - a starting point, if you will. It would be a mistake to use them as a be-all-end-all solution. Thorough examination of oneself should follow as signs of AS/ASD should be evident from early childhood prior to any incidence oor influence of external factors such as abuse and/or bullying. As a part of this, one should be able to see plenty of examples of oneself in the questions on some of those online tests and easily expound on them using self.

An example of this would be when I read the childhood version of one of the tests and it mentioned something about how the subject reacted to going to the playground (Does the subject appear lost or go off by him/herself?) It was something of that nature. And yes, prior to any instances of repeated bullying at a new school, I retreated to the edge of the playground in kindergarten to watch and identify the passing cars or just be in my own little world unless or until someone from my class asked me to go with him or her. I can also identify not understanding the need to go outside to play with the other kids as I could keep myself entertained. Even my mother made note of it. As an adult, it is easier for me to look back and understand that I have some sort of inability to understand HOW to interact - such as in being on a playground. I still do the same thing today in various situations.

I'm using this as ONE example rather than the extent of the whole situation. To me, it shows a level of identification rather than an attempt to cheat.

That said, there are other possibilities, but the ASD realm seems a definite possibility.

It is important that we keep the focus on self rather than attempting to place or displace others from the spectrum.

Also, I think the facial recognition tests are complete CRAP! I refused to even finish it because it made NO SENSE! I would imagine that even the most NT person could misread the facial cues - so I refused to waste my time with it.

I think that people who think that they may have an autistic spectrum disorder should be tested by professionals because it's not something that is easily diagnosed. You should ALWAYS be tested by people who are SPECIALISED in AS and know exactly what they are doing. It's not always easy to find the right person who can shed some light on what is wrong with you but it's definitely worthwhile.

Self diagnosis is can be a good start but it's not the answer to your problems.

Last edited by pokerface on 12 Jul 2011, 2:13 pm, edited 1 time in total.