The Autism research study at Pitt rejected me

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There are four modules of the ADOS. I'm sure I received module four, which is the module used with adoloscents and adults who are verbally fluent. One examiner administered the test with me and they filmed the entire thing. There were actually very few "exercises"...most of the test consisted of simple conversation with the examiner. She asked me all sorts of questions about myself, my hobbies, what I do with my time, etc....There was only two formal exercises involved really. One was somewhat similar to the "picture/story completion" tests you will encounter on certain IQ tests.

Basically you just look at various illustrations in a little book and you have to explain what's going on. At the end of the particular story they presented to me, I had to tell them what the "moral" of the story was. Most of the story consisted of frogs flying around a neighborhood on lily pads which acted like magic carpets. At the end of the story...pigs were flying around, so the examiner asked me if i'd ever the expression "when pigs fly". I suppose this is designed to determine how well you understand sarcasm or something. The other exercise involved five different objects out of ten which are contained in a paper bag. The objects consisted of hot wheels cars, a small wooden block, a little pin, etc....The testee creates a story using these objects and each object is supposed to represent something in story like a house, a character, a beach, etc. First, the examiner uses five of ten objects to create a story. Then the testee has to remove the other five objects and create their own story. This was the very last thing we did during the ADOS and basically the whole thing struck me as exceedingly silly, but it is considered the "gold standard" test where diagnosing and assessing ASD's is concerned.



I'm not surprised about your daughter's results either. This test really doesn't seem to take several things in account and the things you mentioned are among them. In that sense, it seems to have alot in common with most, if not all, IQ tests and it's probably just as meaningless and circumstantial. An individual's performance on it may often have nothing to do with the things the test is supposedly designed to measure.



A revised version of the ADOS (ADOS-2) is supposed to be released in early 2011. It doesn't seem like there will be any improvements to module four though. From what i've read, it wil only include improved algorithms for modules 1 to 3 as well as a new toddler module.

It's largely a guess because you said that you're fine with a cue but have trouble recalling things from scratch; it sounded like it would be a problem organizing information in your mind.

That's what i've heard as well. I know they will not accept anyone with an IQ below 80. They did believe I was a good candidate until I took the ADOS test. My score (FS) on the most recent (out of all the copies of neuropsych/IQ tests I sent them that is) WAIS IQ test I had was 143. I took this test in 2006 and they said they couldn't use the results of this one because it was over three years old. I also took another neuropsych/WAIS test in June, but that was after I sent them copies of all the others I had. I asked them if they wanted a copy of this one, but they told me just to bring it with me when I came in for the study. They said they couldn't use anyone else's IQ results anyway unless they had the actual test protocols (which aren't always easy to access.) Therefore....I had to take four subtests (I suppose this is considered the "short form" of WAIS-IV which consists of the subtests from both verbal and performance with the highest reliability coefficient) from the WAIS-IV after I took the ADOS.

I can't imagine it would be too difficult to find controls with IQ's above 125. After all, this is a study at the University of Pittsburgh and there are many other universities in the immediate area as well. There must be plenty of NT students they could recruit with IQ's above 125.

Well.....i'm not saying it was a bad guess and it's one i've considered myself. I'm not necessarily fine with cue, but it just seems I have less of a problem recalling info when my brain is cued by say, multiple choice exams. OTOH....if someone expects me to tell them about all sorts things i've read and heard about psychology (just for one example) "off the top of my head", I can only remember a tiny amount of general facts. It's this way with everything. I have read about the Battle of the Bulge (i'm a big WW-II fanatic) a million times and I can only tell you a few isolated things about it.

For someone with an ASD, the ADOS can be quite challenging. It strikes right where things are the most confusing. I took the same test at the same location as Horus.

Examples:

That activity with the little things in the bag? I just stared, like, and you want me to do WHAT?

The activity where you explain to the alien how to brush your teeth, using gestures? I kept dropping the gestures.

When they ask what is a time that someone might feel happy, sad, mad, etc? My suggestions were "over-simplified and childlike," supposedly.

They also look hard at your speech ("awkward and inconsistent," they said... mind you, I was chatty that day because it was the day after surgery and I was on painkillers!), eye contact, asking questions of other people (You know the part where you talk about places you've been on the map? I even asked the lady where she had been! And I still failed the test).

I scored a total of 4, with my highest score (12?, if I remember correctly) being on communication. I am right around the border of "ASD" and "autism," according to that test, which is actually quite accurate.

I'm wondering who (if anyone) you dealt with on the phone and through the mail (email and/or snail mail) before your actual participation in the study. I primarily dealt with a research coordinator by the name of Caitlin Conner.She was pleasant enough over the phone and in other correspondences, but she didn't even acknowledge my existence when I showed up for the study. I KNOW she knew who I was and she didn't say a word to me and barely even glanced at me. I found this to be somewhat odd and bit rude. I assume she is an NT and her behavior seemed condescending to me. It was as though I was just another guinea pig loser in her eyes and a glamourous university student like her didn't need to acknowledge my existence. Everyone else at the study was perfectly nice though and went out of their way to make me feel welcome and comfortable.

The activity with little things in the bag just seemed pointless and infantile to me. I was quite bored by the whole thing and just did everything in my power to get it over with ASAP. I created the simplest story I could imagine and didn't try to be too creative.


I was OK with the toothbrushing demonstration thing, but once again found it to be a very childish exercise. They didn't ask me what I thought would make others happy, sad, mad, etc. They DID ask me what it feels like when i'm happy, sad and mad. With the exception of anger, I can't elaborate on my emotions very well and describe them in simple terms others can relate to. Happiness and Sadness seem like much more complicated and sophisticated emotions, I think words fail to express them very well, at least in my case.


The said nothing about my speech, but they did ask me about places i've been on that map (or places i'd like to go.) Since travel and nature is one of my biggest passions, I was very talkative during this part. They said nothing about any of my scores. The doctor (a woman.....I don't remember her name....Dr. Min-something or another) just came in and along with the woman who administered the ADOS, informed me that I did not meet their diagnostic cut-offs.

That ADOS sounds bizarre. Showing an alien how to use a toothbrush? What else did you have to do? Show a walrus how to drive a tractor? Show a cactus how to use a pregnancy test? Who dreams that stuff up?

At my diagnosis, I was given the AQ and developmental questionaire, and something else that I cant remember.

Last edited by zen_mistress on 24 Sep 2010, 10:13 pm, edited 1 time in total.

It sounds like the ADOS is their sole criteria for judging your acceptability.It is too bad, but a lot of organizations are like that. For whatever reason, your test performance did not meet the standard, and it's unfortunate. I would have taken the free night in the hotel on them. Sounds like an interesting experience.

i hope someday there will be a(n accurate) way to examine someone's neurology objectively without relying on things like the right phrasing in a diagnostic interview of a restricted routine or their eye contact.

there was an introductory post not long ago from someone who had been diagnosed by simon baron-cohen despite good eye contact and reading social cues. cohen had said they were superficial traits.

i wish he had elaborated but i do not think the poster stuck around.

I found it to be very bizarre too. I'm not even sure what they're supposed to be measuring with this alien toothbrushing instruction thing. Psychomotor skills? How well a person follows spoken instructions? Something to do with executive functioning? It couldn't have anything to do with processing speed or working memory. It certainly isn't a test of handedness either. There are several different tests of handedness and I performed many of them after I finished the short-form WAIS-IV at this study.

I should've asked what this exercise, among others included on the ADOS, is supposed to measure. I'm really not interested in any of the tests that don't have something to do with intelligence/cognition or memory though. I suppose psychomotor skills can be considered an aspect of cognition, but I pretty aware of what my problems are in that area.

This reminds me of what someone on WP said about a certain IQ subtest. I don't remember the exact name of this test and it's not one of subtests on any of the current WAIS IQ tests either. I have taken it before though and basically it entails a series of illustrations (houses, cars, people, etc...) and the testee is supposed to identify what is missing in the illustrations. One of these illustrations was a barn with no weather vane on it. If you failed to notice the lack of the weather vane....you lose points. There was just one little problem with this illustration designed by psychometricians who might actually believe the tests they create are accurate and reliable measures of "intelligence".

Weather vanes are rarely, if ever, placed on barns. Rather.....they are placed on farm houses and since the test designer/s probably didn't grow up on a farm, they just assumed that weather vanes were placed on barns

Such is the nature of many psychometric tests that purportedly measure everything from intelligence to whether you're a killer because you sign your name a certain way.

Which of these do you take to the bathroom in the middle of the night?
A flashlight?
A briefcase?
A gun?

Well, that all depends on whether or not you're going to the outhouse in the middle of the night in bear country, doesn't it?

It wasn't really the sole criteria, it would be more accurate to say it was the final criteria. Based upon all the copies of the neuropsychological evaulations i've had which I sent to them many months ago, they felt I would be an acceptable participant. This was further reinforced by what my mother told them on the ADI-R and everything I told them during the intial phone screening. They told me they believed I seemed like an acceptable participant right up until the time I started the ADOS. After that.... I took the short-form WAIS and they took my height, weight and head circumference. Then they took me back into the room where the ADOS took place, one of the doctors came in and then
they informed me that I didn't meet their diagnostic cut-offs.

I didn't need to stay in the hotel since most of my immediate family lives a few miles away from the Pitt campus where the study takes place. It's not like they set up participants in luxury hotels in any case ofcourse. Unless the Hampton Inn is now considered a luxury hotel. It wouldn't matter to me if it was.....what I am going to do in luxury hotel anyway? It's not like i'm interested in getting a massage or something. It would've been a very interesting experience if they would've accepted me. As it turned out, it was a huge disappointment and a big waste of time and effort on my part. I spent alot time jumping through hoops for these people. I sent them all the copies of my neuropsych evals. I spent at least two hours total on the phone with them. My mother took over two hours out of her vacation time in Pittsburgh to complete the ADOS with them. I mean I realize it's not the fault of the people involved in this study. I just think this ADOS is a big fat lemon of an ASD diagnostic tool.


Even though i've never been formally dx-ed with AS (for reasons that I disagree with btw), if you take a look at ALL my neuropsych reports/IQ tests, they essentially have AS written all over them.


I mean seriously....

-Problems with executive functioning-check
-Problems with psychmotor skills-check
-Processing speed deficits-check
-Deficits in Visual memory-check
-Large gap between VIQ and PIQ in favor of VIQ-check
-Obvious difficulties with social interaction-check
-Depression, Anxiety, Obsessive-Compulsive traits-check


Furthermore....I exhibit pretty much "classic" NLD according to Rourke's criteria and many of the neuropsychologists who've evaluated me.

I also met the dx criteria for either schizotypal or schizoid personality disorder (more so schizoid IMO and in the opinion of the neuropsychologist who officially dx-ed me with schizoid pd in June) on five out of the six neuropsych evals i've taken in my life.

IMO......Schizoid/Schizotypal pd + NLD/NVLD=Asperger's.

If it was #2 time, i'd take whoever designed the ADOS with me to show them what I think of it

Well.....that will likely happen when the neuroimaging techniques evolve. They are at least somewhat useful now and that's one of the main reasons I wanted to take part in this study. The trouble is...they are expensive and many of us can't afford them and insurance usually won't cover them. I have long believed these are fairly superficial traits as well, so I would largely concur with Baron-Cohen here.

I would simply qualify Cohen's thoughts here by saying these traits are largely, but not always, situational/circumstantial in those with ASD's. I think we also need to define our terms better. What exactly do we consider a "social cue" for one thing? Is the fact that I simply have no reaction ( internally or externally....and believe me it shows) to many things most people find uproariously funny an example of a social cue I don't pick up on? How about the fact the I rarely, if ever, smile at anyone or reciprocate a smile? Is that a social cue I don't pick up on? How about the fact that the eye contact I make entirely depends on the individual/s i'm dealing with? Is there some reason my eye contact must be the same regardless of whether i'm dealing with mental health professionals or the gangs of rowdy teenagers I had to serve when I was a waiter? The "special interests" topic is another one I could on about for hours. How do we determine what qualifies as a "special interest" and what does not?

Does the fact that i've spent untold hours in my life making compare/contrast lists of the allied/axis weapons of WW-II and marine life in the Tropical Western Atlantic/Indo-Pacific qualify as a "special interest"? How about when i've done the same with the flora and fauna of all the tropical/subtropical regions of the world? Not to mention all the time I spent researching the things which allowed me to create these lists.

I've told many of the psychologists who've tested about all this and apparently none of these things qualify as a "special interest" in their professional opinion.

I will try my best to reply to the rest of you tomorrow. I leave you with the song i'm currently obsessed with. An oldie..but goodie. You youngsters sure are listening to some crazy music these days

Kathleen Hanna smells like teen spirit and she's quite the endearing ham too!! !

[youtube]http://www.youtube.com/watch?v=56hJaRNq8go[/youtube]

This is exactly what I have been trying to point out to alot of people. It is a very time-intensive process to be diagnosed with AS. I have been diagnosed with AS, but not before first being "depressive", then having schizoid personality disorder. And now, Horus, look at the huge amount of effort and time you have put into the analysis and evaluation of your condition; and still you cannot obtain a satisfactory label as AS for yourself. Perhaps you do not have AS, I cannot really say. What I do point out though, is that taking a few internet tests and reading the DMS is a far cry from actually getting a diagnosis. It is considered rare for a reason. You now have a more intimate knowledge than most people of just how involved the process of finding out about your particular condition can be. I do hope you someday discover this, and that this recent set-back is only temporary.