The Connors, the ADOS, all those tests...what do they really prove?

Discussion in 'General Parenting' started by MidwestMom, Feb 28, 2011.

  1. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Sonic had his intensive neuropsychologist today so that we can plan for his future as he will turn 18 in August. While he was being tested, hub and I got three parent evaluations to fill out--one was the Connors, I think the other was ADOS (the Aspie test) and not sure about the other. Here is my gripe:

    They DIAGNOSE kids partly based on our answers. But the answers are not flexible. Example:

    (paraphrased): My child interacts with other children.

    The answers are Never, Occasionally, Sometimes, Often and Very Often. The problem is that there is also a BUT! Sonic will socialize with the kids he's known for years at school. He will eat lunch with them and be comfortable with them...HOWEVER, he will not even look a kid he doesn't know in the eyes, let along initiate any conversation. So what is the answer? At home he never tries to invite anybody over. He is a loner. He is not depressed...he prefers being alone. At school he interacts. This is but one of 2/3rds of the questions that hub and I could not really answer without explaining. However...

    When scored, they are only scored by answer without an explanation. The questionnaires reminded me of Aspies...overly concrete with no gray area. It was frustrating and time consuming to fill them out. I do not believe they really tell an honest story and can't imagine how they can diagnose based on those tests. Now Sonic's teacher has to also fill out all of these questionnaires (poor guy). I'm sure he'll have the same struggle. In the end, because Sonic is so different at school, his answers will vary greatly from ours.

    I wish they had a blood test for all these disorders. Honestly, I'll bet more people are misdiagnosed then correctly diagnosed. A long, tiring day for hub, me and Sonic. We had to travel quite far to see this recommended facility.
  2. HaoZi

    HaoZi Guest

    Have they also done GADS, ADI-R, CARS, and SRS? There is a blood test, but it's not very indicative. I was surprised to learn that Fragile X is more common in boys! The functional MRIs that are in testing now look very promising, are there any clinical trials of those near you?
  3. rlsnights

    rlsnights New Member

    Here's the thing about forced choice tests (that's what you're talking about - having to choose the best answer even if it's not a really good answer for your child). When the tests are developed and tested on real kids the test developers refine them over and over until they can, with acceptable statistical certainty, identify a certain subset of children based on a certain group or cluster of answers. There will always be kids who are missed who are really disabled and kids labeled as disabled who are not. But those will be a very small number compared to the number who are correctly identified - based on the force choice answers.

    But without forced choice answers the analysis required to create a reliable and valid test cannot be done. An answer that says "Sometimes but ..." cannot be statistically analyzed in such a way as to enable you to say "when parents mark sometimes on this question (and 8 others on this test) it is highly associated with a diagnosis of autism".

    Valid and reliable forced choice tests are helpful screening tools when used correctly. Tests are valid when they identify the kids they're supposed to identify with a high degree of accuracy. Tests are reliable when you get the same results over and over with a high degree of accuracy. Using the test correctly means that it is used by someone qualified and trained to administer and interpret the results, administered in the way the test directions call for and it is used with the population it was designed for. So if the test was designed to screen 4-7 year olds in a group and your child is 13 the test is not being used correctly. If your child is 5 but the testing is done alone then it is not being used correctly. If the test directions call for the examiner to have been trained specifically in that test and he/she wasn't then that's a problem. And if the test is supposed to be administered by a psychologist but it's being given by a school nurse then obviously that's a problem.

    Because there will be errors even when a test/assessment is administered correctly there should be layers of testing and assessment when the outcome is very important. If you only want to know if your child can read at grade level then one test is fine, preferably one that directly measures what you want to know.

    If you want information that will inform your child's education for years to come then you want lots of layers to the assessment. You want direct and indirect measures. You want direct observation by the examiner as much as possible. And you want the whole shebang administered and interpreted by the most highly qualified professional that you can afford/find. Preferably that person will also administer all the direct testing of your child themselves because a good neuropsychologist or psychologist can draw a lot of conclusions from the way your child behaves during the testing. And they will use the results they get and the observations they make to help decide what to do/test next.

    So - do they measure anything? Yes
    Do they measure what you want to know? Maybe
    Can you make solid predictions about your child's behavior based on the tests? Maybe. The degree to which you will be able to do this has a lot to do with the ability of the person doing the testing to choose the right tests, to administer them correctly and then to accurately and intuitively interpret the results given the questions that are being asked.

    Hope this helped a little.


    (A research analyst in a previous incarnation):whoopdedoo:
  4. Marguerite

    Marguerite Active Member

    It's more common in boys, because they only have one X chromosome. If that one's wonky, that's it. But girls have a 50:50 chance of having a decent X chromosome to compensate for a dud.

    MWM, I agree with you about the rigid way those tests are set up. diagnosis should not be made based on just those responses, there needs to be a judgement component too.


  5. klmno

    klmno Active Member

    I have ZERO faith in those tests. First, any form like that is highly subjective. So many of the questions are "Has the child EVER done ABC?" And only has answers to do choose from as you listed. The question might be along the lines of "not focused on studies when he/she should have". First of all, The answer would be "yes" for most kids but of course, that can't be right if they are looking to weed out which kids are outside the normal realm. Secondly, it isn't a yes or no question. Thirdly, "Sometimes", "Occasionally", and "Often" mean different things to different people. To the teacher who's annoyed with the active kid, it's very different than it is to the parent who's already raised 2 kids before. I was told I was supposed to answer "sometimes or occcasionally" if my child had ever done it all before. That can't be accurate either b/.c what if it was something my child diid twice- say once at age 4 and once at age 7 and I'm filling the form out when he's 11 yo. Is that really pointing out behavior that isn't normal for a child at age 11? And the teachers who think all active kids would be easier to teach if on stilms and think that any misbehavior in sd automatically MUST be adhd know what to put on those forms. in my humble opinion, it's those types of questionnaires that lead so many to a mis-diagnosis. There is a computer test the child takes that helps find attention problems- it's probably a lot more accurate although I don't really think it should be used as the "one & only" measure in a diagnosis either.
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Well, he is 17 and has learned to modify a lot of his behavior. For example, the neuropsychologist asked him about eye contact, which he struggles with but was really doing a good job with. He said, "I try to do it, but it's hard." He said "Is it uncomfortable?" Sonic said, "Yes." My son has learned how to appear quite typical when he has to, although neuropsychologist asked questions of him that lead me to believe he believes Sonic is a spectrum kid. We go back in two weeks for the results and the results are not only based on the tests. They are just one in a part of an overall assessment which lasted from 9-3.

    We are trying to assess his future plus get a diagnosis so he can obtain social security and to weigh whether or not to go for guardianship (which Sonic would be fine with). Thanks for the explanation of the tests! Without the outside assessments, I can't see how they can diagnose any child, but together as a cog in a system, I can see now how they COULD be useful.
  7. confuzzled

    confuzzled Member

    klmno beat me to it.

    the tests you mention are SO highly subjective i have no idea how anyone could diagnosis anything based on them.

    we did a extensive sampling with those three tests...4 teachers, an aide, myself, husband independent of me, and i think the school psychiatric....and it was CLEAR that it was subjective. the teacher that thought she was ODD slanted her answers that way. the teacher that leaned toward depression answered that way. the teacher that thought she was on the spectrum answered that way, and so on. there was absolutely no "meeting of the minds" of data, and each person answering really thought they were doing it objectively and honestly.

    so in the end, no valid data came from that sampling.

    connors and ados (and that third one, lol) might be some small starting point, but i also dont feel they should be used for diagnostic purposes.

    and there are LOTS of people in the world who *are* labeled based on one of those pediatricians office hands out stims like candy based on connors alone--even if its only done by the parent quickly in the waiting room.

    you have to look at the whole picture, a comprehensive battery of tests and the individual circumstances....a few questionaires mean little.

    ps: mine took the connors computerized test for adhd. she scored exactly 50%.
    unfortunately she couldnt tolerate a stimulant at all so we are still (ridiculously) trying to treat the main stuff and see if the adhd magically falls away (stop laughing).
  8. DDD

    DDD Well-Known Member

    The Connors was only solicited from teachers and babysitters when mine had it. It was just an extra tool to be used for evaluation. I understand what you're saying. It is an inexact science and that is frustrating. DDD
  9. klmno

    klmno Active Member

    The real problem comes though when the child's "screening" is done at sd instead of the parent understanding and being able to take the child to a neuropsychologist for a "compelte" evaluation. Typically, initial screenings are basicly just questionaires like these, that primarily look for adhd type problems. So when they are the only thing done, the kid "appears" adhd, and whether they admit it or not, many times that taints future, more thorough evaluations done by others.