Just Plain Confused

Discussion in 'General Parenting' started by SunnyNC, May 5, 2007.

  1. SunnyNC

    SunnyNC New Member

    Hello All!

    My difficult child had his testing begin yesterday for the Autism part of the testing completed with the neuropsychologist. I must say....I am officially confused. To back up...his current main symptoms are:

    - Extreme pickiness towards food (will only eat certain things)
    - Gets very upset in any changes in his perceived schedule of the day's events. If there is a change in our schedule suddenly (going out to eat instead of home or needing to run to the grocery store for something) he gets upset and cries or gets angry.
    - Avoids eye contact with everyone, and even in most still photos.
    - Gets very angry when things are not his way..wants things how he wants them when he wants them.

    The neuropsychologist after the appointment pulled my husband and I into a room and said she does not feel he has any form of Autism or Aspergers...that he was able to converse normally and even told a couple of jokes..okay fine. I asked her about the eye contact issue. She said she didn't notice it at all. I then said that a therapist (later we found out she was a physician's assistant) told us that she had tried to make eye contact with him at least 40 times and he wouldn't/couldn't do it. She said, well there seemed to be a disagreement there. Umm yeah!?! How can something like this not be noticed at all!?! My mom has noticed it, I have pictures of him doing it (looking more toward someone's chest/chin instead of right at the camera lense), my husband and I both noticed it and a previous "expert" noticed it. How could something like this be overlooked. Ugh.

    Anyway...there is more testing scheduled for Tuesday. I know for certain they are doing a WISC IV (IQ) test, and likely a Delis Kaplin (executive functioning) test. There may be others, but these 2 are likely. My confusion arrives at what exactly are these tests for...what are they now looking for? I don't mind testing, but I do mind paying hundreds of dollars for testing that is not geared toward finding any answers. They do feel he shows some Obsessive Compulsive Disorder (OCD) tendancies because my son told the neuropsychologist that he obsesses over cars (drawing them in particular) and counting things...cars in particular. The neuropsychologist told me that maybe this is just his personality...he may be a "type A" type of inflexible child. I don't get it! How can a "normal" child CHOOSE as part of their "normal" personality to be so unhappy in their own skin?

    If anyone has any insights as to what types of diagnosis these tests actually screen for, or well...any thoughts whatsoever, I would appreciate it. I am just in a state of confusion at this point! HAHA!!

    Thanks and have a great day!
     
  2. oceans

    oceans New Member

    Where are you getting the testing done? Duke? UNC?

    The best place to get tested for autistic spectrum is TEACCH.

    http://www.teacch.com/

    It is free, but they have a very long waiting list.
     
  3. smallworld

    smallworld Moderator

    ALL neuropscyh testing includes an IQ test (WISC-IV is the most common) and tests on executive function. The neuropsychologist testing would not be complete without these tests. The WISC-IV includes 10 subtests that make up four index scores (Verbal Comprehension, Perceptual Reasoning, Working Memory and Processing Speed), which give a lot of information about cognitive strengths and weaknesses. These tests can point to ADHD, learning disabilities and/or non-verbal learning disability (NonVerbal Learning Disorder (NVLD)), a cluster of symptoms presumably related to poor ability to integrate infromation. NonVerbal Learning Disorder (NVLD) is determined by neuropsychological testing, whereas Asperger's is determined by detailed history and observation. There is overlap in these two conditions.

    Hope that helps. Please post again if you have further questions.
     
  4. Marguerite

    Marguerite Active Member

    Sunny, how does he score on the unofficial Pervasive Developmental Disorder (PDD) test on http://www.childbrain.com? Do you think it's worth your doing the test online, printing the results and then taking a copy with you to this bloke?

    The other assessments will be of use, and they're the most expensive part of the process. If you still feel they got it wrong, you can go elsewhere but get copies of the tests' scores with you (or sent to the new person).

    These tests shouldn't be repeated too often anyway - having had them done, te scores can be looked at impartially, any further testing is simply a refinement of what has already been done. Work shouldn't need to be repeated.

    BUT - YOUR observations and concerns should be getting taken on board. Just because he can talk doesn't mean he's not Aspie, at least. difficult child 3 was telling jokes at 9 - the jokes he liked were the ones involving puns, or some other form of word play. I bet that's what he was telling. Can you find out? Ask your son to tell you the joke he told the doctor.

    With words and difficult child 3 - he was always working at trying to build his skills to make himself seem as normal as possible. He still does. You could hold a conversation if you talked about computer games, for example. He was quite articulate at 9, he understood that he is autistic and that it means he has to work harder at some things, but other things are easier for him than other people. He could explain a process, in writing as well; he was brilliant at written comprehension exercises (or anything in writing); he had an amazing knowledge of music, including musical theory; AND he made eye contact often, which is unusual. But the language delay that is part of his history determined that his diagnosis is not Asperger's, but autism.

    difficult child 3 now tells more complex jokes although word play and slapstick are still favourites. He understands sarcasm and is also very good with his comedy timing these days. His prodigious memory means he can memorise jokes, quips, lines etc and trot them out when they seem to 'fit' a situation. This is what difficult child 1 has been doing for years. These kids LOVE humour and are capable of it, it justtakes them longer.

    Temple Grandin's written a book called "An Anthropologist on Mars". Basically, these kids feel like outsiders and like Temple Grandin, both my boys have become keenly interested in animal behaviour as a way of trying to understand human behaviour. They are able to make observations in much more depth because they can concentrate so very thoroughly. Humour is an important aspect of human behaviour, which is why I think my boys study it as if it were a university subject vital to their matriculation. difficult child 3 reads TV comedy show scripts, he even transcribes movie scripts into a text file. He memorises huge chunks of these and quotes freely.

    It's all part of what difficult child 3 described, back when he was 8, as "getting good at pretending to be normal."

    Good luck and don't despair. Maybe threaten to ask for a second opinion?

    Marg
     
  5. flutterbee

    flutterbee Guest

    That's very important. The neuropsychologist difficult child saw told me she didn't expect to find what she did with difficult child because difficult child compensates so well around others. She came to her conclusions based on her testing, of course, but also from my observations and the observations of therapist. If you feel you're not being listened to, you may want to look into another neuropsychologist or have therapist or psychiatrist talk to him/her.
     
  6. Marguerite

    Marguerite Active Member

    A point to consider - the brighter the kid, the more they compensate and the more successful they are at hiding it. It's not that they're being deceptive, it's just that their coping strategy includes copying normality, almost automatically. They can't snap out of this and turn on their disability, they have got into the habit of hiding it.

    Example: difficult child 3 has done some acting, but he will only do a role which doesn't ask him to show any character flaws. He works so hard all day every day to be as good as he can be, that to deliberately portray somebody of imperfect character is too upsetting for him. He is scared that people will see him misbehaving and think that he really is like that, and he works so hard to be good. He was so upset last year about his drama class play, that he had to pull out at the last minute because his character had to be petulant and spoilt and it was just too upsetting for him to do it. And yet only a few weeks later, he was in the film as Noah, right on cue with every take. He didn't fluff his lines ONCE - but he was OK with playing Noah, because Noah was a good man, the original wildlife warrior. Even though he had to act worried at times, or anxious, he was able to do THAT - he just couldn't let himself show anything negative in other ways.

    Marg
     
  7. SunnyNC

    SunnyNC New Member

    Our testing is being completed at a psychiatric office in Concord, NC (just northeast of Charlotte, NC) that deals with both adults and kids. The pediatric neurologist sent us to this neuropsychologist who must work primarily with children as her office is full of toys.

    I did the online Pervasive Developmental Disorder (PDD) questionnaire and got a score of suggesting possible Mild Pervasive Developmental Disorder (PDD). I have printed it out, but I do not think I am ready to question the neuropsychologist about it just yet.

    I did ask my son about the "jokes" and didn't get the answer I expected actually. I was assuming he actually cracked a couple of joke jokes.

    Part of the test apparently was completing the statement. The "jokes" actually appear to be witty answers, here is one such that my son remembers...

    My Mother___________

    his reply... "should give more dessert." Which is actually funny to me because he doesn't like to eat dessert! HAHA! So my guess is because it was a creative answer, it did not support an Autism/Asperger's diagnosis.

    I am going to print out the pictures I have that show his avoidance of eye contact with the camera lense, I have 3 pictures I took and a school picture from Kindergarten that show it. I see the Neuropsycomotrist (sp) for the remaining tests, and will point this out to her, and ask her to pay specific attention to this during her round of testing. There is no way, if you are looking for this, that you can miss it...it is just that obvious that the child has something up with his eyes.

    I did look at the TEACCH website (thank you for the link!) and I will call them Monday morning to see if they can get us an intake appointment. There is an office about an hour from us, so that is the one I will call.

    Thank you all for your replies, I always knew this was going to be a battle for a diagnosis, as by all intents and purposes...he LOOKS "normal." That has been my dillema all his life...the pediatricians would always send our concerns away with "he's a boy, give him more time, etc." I am done listening to that logic as SOMETHING is "wrong" here!

    Have a great day!
     
  8. TerryJ2

    TerryJ2 Well-Known Member

    A point to consider - the brighter the kid, the more they compensate and the more successful they are at hiding it.

    I agree.

    In our case, our neuropsychologist said difficult child's lack of eye contact was ADHD...iow, difficult child was looking all around the room at absolutely everything, and did, in fact, make eye contact with-the dr a couple of times. The dr was just one of many things difficult child looked at.
    We've never had a problem with-difficult child not looking into the camera or lens at all... your difficult child definitely has something else going on.

    Good luck with-the rest of the testing.

     
  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    How long was he tested? My son was twelve hours. The neuropsychologist didn't see his symptoms either until my son got over his "good behavior" mode and then he eluded eye contact. The bottom line was that my son was tested in EVERY SINGLE WAY and the neuropsychologist worked on the results even at night. It took six two hour appts. before we were told anything. If the neuropsychologist just did WISC testing that isn't going to point to anything.
    I'm not positive, of course, but, sadly, it sounds as if you didn't find a very good neuropsychologist. The best way to go, in my opinion, is to call your nearest Autism Society to ask for a neuropsychologist who understands Autism and who other parents are happy with. That's how I found mine. Unfortunately, not all professionals are equally competent.
     
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