I get really annoyed with the way some kids get so badly mislabelled so easily. We tend to NOT get bipolar as a diagnosis for kids in Australia (even when they should) but difficult child 1 was given a diagnosis of ADHD at age 6 (when I had already been asking for years for help, there was something wrong) and it took until he was 14 to get the Asperger's label. And even then it was so difficult to asses, because most of the tests are not deisgned for older kids; they have adapted too much by then and can fudge their way through the tests and unwittingly compensate. It takes a really special analysis looking at subtleties in sub-scores to recognise it.
I think the most telling moment for us in difficult child 1's assessment at a multidisciplinary clinic, was wwhen they asked him to write something for them. "We want to see how well you can write," they said. "So please write something for us. It can be a story, it can be anything." They gave him a pen and paper and left him to it.
But their instructions were NOT specific. They should have said, "We want to see how well you can create a piece of writing. Please write something original for us, made up now on the spot."
Whereas he thought they wanted to assess his handwriting! So he wrote (from memory) the chapter of the book he had been reading just before the test.
When I discovered this (he hadn't intended to be deceptive; I happened to pick up his book a couple of days later and read the same words in his test, and asked him about it) I rang the clinic to tell them. THEY DID NOT MODIFY THEIR diagnosis (which was "He writes too creatively to be Asperger's.")
I had also asked them to assess his short-term memory issues. They did this by reading him a series of digits (I believe this is called 'digit span'). But they read the numbers very slowly, a second between each digit. So a 7 digit sequence took over 7 seconds to read out. There would be a long pause and difficult child 1 eould recite the sequence back. But the trouble was, difficult child 1 was able to use his long-term memory to 'record' the sigit span, so it wasn't the test we needed.
About six months later we were talking about the assessment process and difficult child 1 piped up with, "Why did t hey try that number sequence thing to test my memory? If they had asked me for the digits in reverse order I would have got a better score. Last on, first off is easier. See?" And he recited the number sequences again, still in his memory.
So much for SHORT term memory.
I ang the clinic again. They said they would not revisit the diagnosis, they stood by their testing and there would be no purpose gained in them re-testing difficult child 1. I reminded them of the writing test glitch - they wouldn't budge.
They had done the same thing with difficult child 3 (who had been tested by them a year earlier than difficult child 1). They had said to us, "We will need to see him again in a year, we will call you with an appointment closer to the time." A year came, I hadn't heard form them. I rang them and they said, "We've decided to not re-test him. We stand by the original diagnosis, there is no reason to change."
I said, "He was non-verbal when you tested him with a verbal quiz, to which he was unable to respond. He is now more verbal, I think you would see a great difference."
Nope. Not interested.
I still think it's ridiculous to score a kid's IQ on the basis of a test where someone he doesn't know is sitting there talking at him, when he doesn't have age-equivalent receptive language unless it's written down. If they had given that 4 year old a written test (same questions) they would have got compliance. But his lack of compliance was read as inability, meaning "borderline" (I'm assuming "borderline retarded" although they carefully didn't use the "R" word).
It's quite common for spectrum kids to be non-compliant with testing, or difficult to test for all sorts of reasons. The distractibilaty factor is one.
I remember when difficult child 1 was first being tested. The school counsellor assessed him in my absence without my permission or knowledge; she reported that he was unable to complete the test because he was fidgetting too much and wouldn't sit still. difficult child 1 used to fidget a lot the more anxious he was. But when I had him one-on-one at the local Community Health Clinic psychologist for much more careful assessment, I was there observing. Partway through the test difficult child 1 said, "I'm bored with this. I don't want to answer any more questions. Let's talk about birds instead." (Birds were his current obsession - still are). The psychologist was able to bring him back on task, we explained that it was important for him to do the test. But to do this he had to 'stop the clock' while we talked to difficult child 1 and explained. A lot of psychologisgts working by the book would not have stopped the clock and would instead have marked the point where time was up, even if the intervening time was not all spent on doing the test.
These tests are inexact. The original IQ tests were not developed as diagnostics, not in the way they are being used. Originally they were used to map the spectrum of normality. If you have ever studied statistics you will understand things like normal error, standard deviation, too many variables.
No key is better than its original parameters. In other words - the original group that was assessed to develop these tests is the only group for which the tests can ever be relevant. And the original tests were given to kids in school, 'normal' kids. The sort of kids who would not have been in those classes - the difficult kids, the weird kids, the 'retarded' or otherwise too-different kids, simply were not in the test group. Other kids not in the original test group are kids for whom English is not their first language. Tests have been translated but you need to translate more than the language. Technically the tests don't even apply to Aussie kids, except that there are tests now which have been fully adapted for (allegedly).
For example, a test which requires the subject to spell would mark an Aussie kid wrong for words like "humour", labour". "favourite" and so on. "What month does Winter begin?" would also get the wrong answer in Australia. US testing would have questions which would give wrong answers in Australia and vice versa.
I got tested a lot when I was a kid. I suspect it was due to a combination of things - I was considered to be exceptionally bright but I was failing to achieve to my expected standard (in my opinion this was either due to the tests picking up some aspects of my early reading and hence my absorption of more information as facts than my brain was actually taking on board as knowledge; or my extreme anxiety due to ongling bullying and pressure to achieve in direct conflict). I was also considered to be depressed. Not surprising, really. And yes, I'm probably a carrier Aspie, it does run (gallop) on both sides of the family but especially on my father's side.
But I remember the tests being given to me, I remember trying to answer some of the questions and asking for help when they didn't make sense. I was told to ignore those - it was because the test was skewed to white US, I was told. Seriously. Plus I was donig a test designed for adults so questions on how much I smoked, what my alcohol intake was and my libido (that was one word I didn't know at the time!) I was told to leave as N/A. I didn't think much for the chances of any valid information coming out of that test!
Since the original testing when thew whole concept was developed, a lot more work has been done to develop tests which can give more useful information. But the original premises remain - these are all based on the earliest testing, which was based on a narrow group of "normal" white US kids. And there is always the tendency (the occurrence) of testers pushing the tests to the limits and beyond, to glean as much information as they can from the results. But they generally go too far and read significance into what is more likely "noise".
It's like the first discoveries of quasars in astronomy, those massive radio beacons sending out rhythmic, strong radio pulses at regular intervals. People tought intially that quasars were the output of intelligent life, when in fact they are simply vast balls of plasma revolving at high speed around one another and thereby pulsing out electromagnetic radiation.
Testing is useful. Just be cautious about what you read into it. And be extra cautious about what an "expert" tries to read into it. Always keep an open mind. For example, I know I'm not anywhere near as intelligent as I was originally thought to be. That still leaves a lot of room for some smarts, mind you!
Marg
