A new diagnosis or not?

Discussion in 'General Parenting' started by Lostparent, Jan 18, 2008.

  1. Lostparent

    Lostparent New Member

    I really believe my difficult child suffers from Aspergers.He has NonVerbal Learning Disorder (NVLD) and Tourettes already diagnosed.I don't know if it is worth getting the nw diagnosis or not.If your kid has Aspergers,what made you get the diagnosis?I don't know if it will be more helpful or hurtful.I homeschool him so I don't need the diagnosis for the school system.
  2. smallworld

    smallworld Moderator

    Deniese, what kind of professionals have already evaluated your difficult child. In other words, who gave you the current dxes?
  3. nvts

    nvts Active Member

    Personally, I'd go for the most accurate diagnosis. It doesn't hurt to have them and certain diagnosis can open up doors for different services, etc.

    Just my opinion!


  4. Lostparent

    Lostparent New Member

    He has been with All Childrens since he was 5.The NonVerbal Learning Disorder (NVLD) was diagonesed by the Center for Brain Health.He was diagnosed with Tourettes 2 years ago.I have spent thousands trying to get the right answers.I have had misdiagnoses before and I just want to finaly know what is wrong,if anything else.His recent IQ test given by a Nerosphygologist was 73.He doesn't have a problem with noise,lights and so on so I don't know what to think.
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Is he getting any interventions, since he's not in school? Do you have any supports in place for his future? I know my son, who is now fourteen, is already starting a plan for when he's eighteen and is getting a lot of supports.
    I have a NonVerbal Learning Disorder (NVLD). I've been dxd. over and over again to see if it's Aspergers and nobody thinks it is, but in my opinion it's just as difficult to deal with "the world." The only real difference is that I appear animated, bubbly and friendly, but my social skills are very poor and I tend to like to be alone or just with my family. You need a lot of coping mechanisms, which were never taught me, with a NonVerbal Learning Disorder (NVLD).
    I have a verbal IQ nearly 120 and a performance level of 85. I am confused a lot of the time...lol. Wish I'd known some tricks I've recently learned when I was young because I had a really rough time in my adult years. Whether it's Aspergers or a NonVerbal Learning Disorder (NVLD), in my opinion he should get a lot of help with coping skills. Everything from trying to find your way to a simple destination to figuring out change to figuring out how to organize your desk is a real battle for someone with a NonVerbal Learning Disorder (NVLD) (or at least it has been for me). I lost a lot of jobs because of it.
    Good luck!!
  6. Lostparent

    Lostparent New Member

    My husband and I are discussing what therapies we should get him.We don't know if getting a diagnosis of Aspergers will get him SSDI and open more options to him.Plus we could save the checks for him to have as an adult to help him out.Our main goal right now is to him educated enough to take care of him self and have a family of his own.We are prepared to have him with us forever but that is not what he will want.I'm just so confused on what to do.My husband wants me to get the diagnosis.
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I'll tell you what others tell me. It's really too early to plan for his adulthood. Yes, we plan way ahead for our "typical" kids and have the college funds ready, etc. I'd like to say that we can do that with our Spectrum kids too, but in my opinion it's hard. Many smart ones still need supports and help, like SSDI after eighteen. Some need assisted living. Some shouldn't have and don't want families. It varies. I don't think you can make any real plan for a child with this sort of difference. The best thing to do is get interventions (In our case social skills and life skills top the list, WAY above Geometry). I think it's important for kids on the Spectrum to socialize a lot too. My son has really learned a lot about social skills from his social skills classes AND from his classmates. Does your son get out and about with peers? I homeschooled a year and one big problem was that my kids were with us all the time. Is he in activities? Sports? 4-H? Anything? I think that helps. Academic education alone is not enough for kids on the spectrum. They may be highly intelligent and very well schooled yet unable to utilize it to take care of themselves. A friend of mine has an Aspie with an IQ of 160--brilliant, but totally unable to hold a job--he's thirty years old and on SSI. Yes, he got married (he met a girl from Chile on the internet and flew there on a SSI check), but his young wife gets very angry at him. In a sense, she has to take care of him, although he is an adult, and my friend is hoping they choose not to have children. He never got any interventions because of his age. They didn't know about Aspergers thirty years ago.
    She and I are not sure that, even with interventions, he'd be able to live independently. I'm looking at my own son, at fourteen and a half, and so far it looks as if he'll need assisted living as an adult...but we still have a few years to go. Spectrum kids are NOT adults by eighteen--they mature very slowly.
  8. Lostparent

    Lostparent New Member

    He doesn't seem to have any major social problems.He has a best friend and goes to the skating rink on friday nights.He just recently started to lay around and do nothing if his best friend is gone or grounded.He isn't comfortable making new friends anymore.I just started homeschooling 3 months ago because the Speccial Ed director for our county said it was the best thing to do since our schools are not equipt to teach him.He reads on a 2nd grade level and writes like a 5 year old.He still doesn't understand how to leave spaces between his words so it looks like a bunch of nonsense on the paper.

    He is very small for his age and he has only lost 4 baby teeth.He has short stuby hands and I always wonder if this is some how conected.I don't know if this is commen among kids like him or not.

    I appriciate all your help and concern.I love the help and support I have recieved on this site.
  9. smallworld

    smallworld Moderator

    Lostparent, has he ever been evaluated by an endocrinoligist? You might get some answers about why he has short stature and slow growth. There are medical and genetic conditions that should be ruled in or out.
  10. Lostparent

    Lostparent New Member

    No.I din't know who to ask.I asked his Nerou and is pediatrician but they never said anything.I wasn't sure what doctor it would be.Thanks and I will make him an oppiontment.

    Thank you!
  11. smallworld

    smallworld Moderator

    You're welcome.

    by the way, your school district (SD) is in violation of providing a free and appropriate public education. If the SD can't provide the type of education your difficult child needs to learn, it must contract out to provide appropriate services. You should post on the Special Education board for more expert advice on this particular situation.
  12. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    LostParent, I think smallmom had a good idea, but I'd take it further and also do genetics testing. We had that for Lucas. A Geneticist took a blood test and it took about three weeks to come back. He has some dysmorphic features so they were concerned about the possibility of a genetic problem, but it came back normal. I still think it's good to check out everything (I'm very thorough).

    If the school has no resources for your son, by law they are supposed to send him, at their own cost and transportation, to another district. My Pervasive Developmental Disorder (PDD)-not otherwise specified son goes to school in another district and gets bussed door to door. You have that option too.
  13. Jena

    Jena New Member


    Didn't mean to jump in but yes I strongly agree as well. My soon to be step daugther has turners syndrome a growing disorder. they werne't sure as well in the beginning. Now i don't know much about it but it's def. worth making an appointment.

    good luck to you

  14. Lostparent

    Lostparent New Member

    Were any of you able to trace the issues back through the family line? I haven't found anyone to conect any of my sons disorders to.I don't want to feel or think that I am feeling to much because he isn't perfect.I struggle all the time with this.Where do you draw the line and just except what ever is coming?
  15. Marguerite

    Marguerite Active Member

    Sometimes these things can turn up out of the blue, and sometimes you can trace them. With our family, I reckon I can trace similarities on both sides of the family tree, back a couple of generations. Not necessarily anything diagnosed as a problem, but the odd family member, the talented but weird ones, the genius eccentrics.

    difficult child 3 is still losing baby teeth, at almost 14. He's small but suddenly growing in the last few months.

    With your son's diagnosis, I'm thinking you may be suffering from what I call Blind Men and Elephant Syndrome - where each specialist only looks at the bit within his/her specialisation, and ignores the rest, so you get a patchwork diagnosis list instead of having someone look at him overall and connect the dots. You do know the story of the blind men and the elephant? a group of blind men encounter an elephant for the first time and depending on which part of the elephant they encounter, they each draw very different conclusions on what an elephant is like; each is getting it wrong, and yet collectively they could be so very right.

    We can't diagnose here, so please be aware that what follows is only the opinion of a lay person.

    The IQ test - can you get hold of the complete test results? The sub-scores? I think it could tell you a great deal.
    If your son's IQ scores are about that level across the range of sub-scores, then I doubt Asperger's is a likely diagnosis.
    But given what you say about your son, especially the non-verbal learning disorder, there could be a lot more going on and some clues in that test which perhaps another expert should look over, especially taking the NonVerbal Learning Disorder (NVLD) into account as they do so.

    Society's use of IQ tests have gone way beyond the original intention and purpose. I think even gone beyond appropriate and valid use, and certainly given far more weight than is perhaps correct or appropriate. We forget their original purpose and how they have been constructed.

    The purpose of IQ tests originally was to examine a spectrum of children and determine where each of them came on that spectrum; the ones near the top were to be slated for extension classes, told they were bright and supported into a high-powered career while the lower-scoring ones had expectations reduced and destined for more hands-on careers. it has since been found that children will achieve better when put in situations where they are told they are bright and capable; when children are put in situations where they are told they can't achieve beyond a certain level, that is what you will get.

    Original IQ tests were developed for a specific group - white kids, middle class at least, US-raised for preference, functioning normally and educated in mainstream with age-equivalent peers.
    With every step away from this that you take, you decrease the validity of any test results (whether high results or low ones).
    The testing is comprised of a number of smaller tests, each dealing with a particular area of capability. The test is administered according to very strict guidelines with scoring also done according to strict guidelines. The belief is that a person's IQ does not change through their life. We know that now to be incorrect.
    We tend to equate IQ score with intelligence. Increasingly, we realise this is inaccurate.
    The scale is not linear. If you go further than about 20-30 points away from the centre line (100) you lose accuracy.

    difficult child 3 and difficult child 1 both 'failed' their first IQ tests. For difficult child 3, his language delay prevented him from properly recognising the questions; plus he had no concept of the validity of the test and was not necessarily motivated to cooperate; if he found a part of the test that interested him, he wanted to continue (such as playing with the blocks). he didn't always want to make a pattern as requested, if he thought of something else to do instead.
    difficult child 1 on the other hand WAS motivated to cooperate, but was feeling so anxious that he couldn't sit still; he was fidgeting so badly that the tester stopped the test, but scored it as if he had completed it. In both cases, the testing time allowed was only about an hour.
    In contrast, easy child 2/difficult child 2 was tested at age 4 (same age that difficult child 3 was tested) and her testing was done over several sessions. her sub-score tests ranged considerably but were all high. She scored 17 in some sub-tests and her lowest (at age 4) was about 12. That is equivalent to IQ scores of 170, and 120 respectively. A big span and one which, with hindsight, should have set off alarm bells.
    The type of test changes as they get older - when she was tested a few years later, another couple of tests were now included for a child who was reading and writing. Her lowest score was 6. Again, her highest score was still 17.

    In most tests, especially where the sub-scores are similar enough, they are averaged out to give you a final number. Where there is a significant gap in sub-scores, especially between verbal/non-verbal scores, the instructions say to NOT average them out, but to present the results separately.
    Too often, this instruction is ignored. Education systems especially seem to do this. This is what happened with both my boys' first tests. In averaging out really high and really low scores, the outcome can be tragic - gifts are ignored, but also deficits can disappear in the confusion and the child present as "normal IQ" instead of a bright but learning disabled child desperately needing help.
    Both boys have been tested again some years later and scored way above average.

    So try to get your hands on those sub-score results then sit with a psychologist and try to work out a program to help your child in those areas where he scored lowest. Ignore the numbers - I suspect they are meaningless. Just try to find some reason for the low score.
    For example, if your child was deaf and you didn't know it, and you have the child IQ tested but the child simply couldn't hear well enough to answer the questions, the child could have been diagnosed as "retarded" (to use a now outdated terminology). Or if the child is dyslexic, but the test is given entirely as a written test - same problem. The original questions etc were not developed with learning-difficulty kids or handicapped kids in the mix. They would have been screened out, probably pre-labelled as 'unfit' and the test based on 'normal' kids, not ones who clearly couldn't function. There used to be a lot more institutions back then.

    Now leaving the question of IQ, I give you an example of "blind men and the elephant".
    My sister is an intelligent woman. After her second child she noticed certain symptoms. She had felt them mildly for some years; now they seemed much worse. She had shaky hands, a very fine tremor when she held her hands out. She couldn't do any fine work. She was hating hot weather, even wearing summer clothing in cool weather because she always felt 'hot'. She was really anxious, very nervy, irritable and touchy. She couldn't sit still, always felt she had to rush here or there, and yet felt so exhausted so quickly. But she couldn't sleep, either. She was increasingly feeling a sense of dread, as if something bad was going to happen but she didn't know what. She was having trouble swallowing, feeling like she was choking. Her hair was falling out; not in patches, but generally thinning.
    She went to the doctor and described it all. The doctor's reaction - nerves. Maybe some post-natal depression. And anxiety. The choking feeling - he put that down to her being rushed, with her young family and not taking the time to chew her food. She tried to explain that even a glass of water felt 'lumpy' but he ignored her. he sent her away with a prescription for valium, a referral to a psychiatrist, some conditioner for her hair and encouragement to relax a little more.
    Even when my sister asked, "Do you think this could by an over-active thyroid?" the doctor laughed at her, told her to stop trying to diagnose herself and leave it to the experts. Instead, he chose to find about three different things wrong when really, ONE thing explained it all. He refused to do blood tests.
    Some years later, my sister was correctly diagnosed and had about 90% of her thyroid removed (leaving a normal size) - it had grown inwards many times larger than it should have been and was threatening to block her air supply.

    These days doctors are encouraged to learn about Occam's Razor, which basically states that when there are multiple possible explanations, the simplest one is the most likely.

    I think, where your son is concerned, you mind is automatically switching into "Occam's Razor" mode and trying to find one explanation instead of the many.

    You may be right. But you need experts to assess him properly, to look at evidence already gathered and perhaps do more tests where things were left incomplete. A multidisciplinary team would be great - they all get their heads together and talk to each other, which I suspect did not happen in your son's case - but even having one really good, all-round specialist who will look at ALL reports and gauge them carefully, would be better.

    IN the meantime - what do YOU think? Where do YOU think he needs support? Work on that, deal with what your own instincts tell you and be prepared to moderate your own approach in the light of more expert information when it comes to light.
    But trust your own instincts. Especially since you're home-schooling him, you already have some very good ideas.

  16. susiestar

    susiestar Roll With It

    Hi Diniese!

    For what its worth, my Number ONE rule of parenting is : (drum roll please!) If your instincts are telling you something, LISTEN!!! In my life as a parent, the ONLY big mistakes I have made happened because I did not follow my instincts.

    I am totally flabbergasted that the Special Education Director (or any school employee) told you to homeschool because they did not have the resources to teach your son!!!!! Please go to the Special Education forum on this site and learn how to handle this. This violates quite a few laws.(the school - NOT you!!).

    It very much sounds like googling for an educational advocate would be in the best interest of your family. In most places the school must provide testing and other services for homeschooled children as well as school attending children. I am NOT 100% sure here though. Most of the time educational advocates are free.

    Given the small stature, etc... it is probably wise to see a developmental pediatrician. We loved the one we saw, and I know he coordinated endocrinology, genetic testing, etc for patients that needed it.

    A University based Hospital is often a good choice, and of course if there is a Children's Hospital that is almost always the best place to start.


  17. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    My son was adopted so we had no real history. The Geneticist told us that some disorders are passed along and some just happen. Some produce very vague symptoms of other disorders. in my opinion one blood test to rule everything out is very worth it.
  18. Lostparent

    Lostparent New Member

    You guys have been grea!Thank you for all the advise.I hope to figure this all out as soon as possible.I will let everyone know how it came out.