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Joined: Nov 2011
Posts: 5
Junior Member
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OP
Junior Member
Joined: Nov 2011
Posts: 5 |
This phrase has been uttered by 7 doctors now. I thought we hit gold with doctor #8, but things have not been settling well with me and I don't feel like I am on the right course with my son. I need to know if I am just not accepting his true diagnosis, or if he possibly has been misdiagnosed. My son is 6, and we initially started seeking help because he was on the verge of getting kicked out of preschool at age 4. He was inattentive, hyper, would bump into other kids on purpose, didn't listen to the teacher, and - OUR biggest concern - he had no currency. He did what he wanted, when he wanted to, and no punishment or bribe could deter him. If I asked him why he hit another child, it was always "because I wanted to." We saw psychiatrists, social workers, therapists, pedis, you name it, and no one could figure him out. The only lead we ever got (and from most everyone) was it "might" be Aspergers. I took that lead and made an appointment with a very well known dev pedi in the autism field. She did 4 days of testing. According to the results - he scored just below the cutoff for a spectrum disorder, and the Slosson IQ test showed a 150 IQ. His results from the scoring by his teachers on the social aspects put him in the normal category, however. He is missing almost ALL of the hallmarks of Aspergers - no obsessions, no adherence to routine whatsoever (he actually craves change!), he engages in conversations with other kids just fine now (he was more of a loner in kindergarten tho). He claims he doesn't like other kids because most of them are boring. The dev pedi still diagnosed him as an Aspie and at that time, I was grateful to have a name for what we were dealing with and started reading up on books. Shortly after the dev pedi testing, he was also tested at school for G&T and tested into the program rather easily. So naturally, for the past year I have been devouring books on Aspergers. However, I am finding myself skipping over multiple chapters as it just doesn't fit my kid at all. A lot of the previous issues are no longer relevant. His fine motor - which was an issue at the time of testing - is now completely at grade level. He has matured and no longer bumps into or is aggressive with other kids. And we've eliminated his tantrums and hyperactivity through diet (Feingold, plus removing casein, gluten and soy). He still doesn't have a currency, but I have found that he will listen to me and comply if I provide a rational, logical explanation. I just started reading this book - Misdiagnosis of Gifted Kids - and in the beginning, they list the problems that highly/profoundly gifted kids often present with. ALL of my son's issues are on this list! I was floored! So now I googled and found you all. I am looking for advice or guidance on this issue. Could it be that my son was misdiagnosed? If so, are there gifted "testing centers" or the like (like autism centers have) that can find out if he is highly gifted, and this is the cause of his issues? If you have a child like this and find that the Aspergers diagnosis DOES fit, could you link me to information, as what I'm finding isn't cutting it? And finally, how would you approach the dev pedi with this new information - the book is controversial and she is very well respected in her field, I feel like I really need to have my "ducks in a row" so to speak before I challenge her diagnosis? Thanks so much! Stacy
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Joined: May 2011
Posts: 102
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Member
Joined: May 2011
Posts: 102 |
Hello and welcome. I'm not sure were you are located but below is a link of some recommended testers originally posted by Grinity. Psychologists who specialize in IQ testing for Highly Gifted Children. And a list of Psychologists who specialize in IQ testing for Highly Gifted Children. Also know to be useful in sorting out 'Twice Exceptional' issues. (2E) http://maps.google.com/maps/ms?ie=U...5059822090.000461ba927f03f403bed&z=4
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Joined: Dec 2006
Posts: 19
Junior Member
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Junior Member
Joined: Dec 2006
Posts: 19 |
This is a great book: Different Minds by Diedre Loveky. She describes what ADHD and Aspergers looks like in gifted kids versus non gifted. She clearly describes the difference between a gifted child with ADHD versus a gifted child with Aspergers and how they look different from children with average intelligence with these diagnoses. Personally, I would not worry about the diagnosis unless perhaps one was medicating the wrong thing. I don't know if you are familiar yet with the term 2e, twice exceptional? It means gifted with an issue such as Aspergers, ADHD, a learning disability, etcetera. I've found that even though behaviors are under control, things change with developmental spurts. Also, if the child is in public school, you never know when you might need an accommodation, IEP, Individual Education Plan. To go through and get the diagnosis again would be a hassle. My child is PG with a diagnosis of sensory processing disorder, then ADHD, and now anxiety. We have had good years and bad years. We have done, therapy, diet, non drug interventions, counseling, and medication, and all approaches have served their purpose. For example, 4 was a tough year, and so was 6.5 to 7, but year 8 was really bad, but whatever was going on then we got under control with diet and therapy for almost two years, but then ten came along and now it is something else. But you know, all the years I didn't mention were great; I enjoyed the brilliance. Did you check the Davidson site to see if you already had the required tests for their organization? http://www.davidsongifted.org/young...holars___Qualification_Criteria_384.aspx If not, and you think he is close, then maybe you should see someone on the list above for testing and another opinion. That is what we did, but whole picture is really important. I save all the documentation and opinions because I never know when they will be helpful.
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Joined: Jul 2011
Posts: 17
Junior Member
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Junior Member
Joined: Jul 2011
Posts: 17 |
I am not a teacher. My mom was. My friend is a G&T teacher w/13 years' experience and a Masters in it.
They're both saying if your kid's only currency is listening (and modifying behavior in rational and acceptable ways, as a result) when you explain things rationally and logically to him, it is highly unlikely, if not impossible, that he is an Aspie.
That's all I've got for you, but I trust them both. Get your child re-tested, or re-evaluated, on that score.
Also, I was not aware that the obsessional and/or other somewhat troublesome behaviors of Aspie kids could go away, or be grown out of. They can be moderated and he can somewhat adjust to those outward things w/behavior training, etc, but that he could not just make them stop/they do not just disappear, no matter what. If they do, then being Aspie was not the cause of them. That's what the psych told us when our kids' teacher last year intimated he might be, and we (and the psych and his peds dr) were all like, what? He's 7 and no one but you ever sees them, and only under certain circumstances/in certain environments, and they go away at will?
NO WAY. Something else is going on, we all said. And the something else turned out to be he's gifted. Go figure.
Get your child re-evaluated. Good luck.
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Joined: Jun 2011
Posts: 46
Junior Member
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Junior Member
Joined: Jun 2011
Posts: 46 |
I really don't have advice for you as we are going through pretty much the exact same thing with my daughter who turns 4 next week. In fact I have a thread about our issues just a little below this one titled "when is it more than just gifted?". I'm totally baffled by my child and have no idea what to do next.
Just wanted to let you know you are not alone!
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Joined: Nov 2011
Posts: 5
Junior Member
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OP
Junior Member
Joined: Nov 2011
Posts: 5 |
Thank you all SO much for the responses. utkallie - thank you especially. It's one heck of a roller coaster ride, isn't it? The main issue I have with NOT knowing is - where do we go next? I feel like I'm just winging it along here as a parent, and I desperately need some kind of solid ground to base my parenting decisions on. With the Aspergers diagnosis, I read everything I could on the subject, trying to get a map in place of sorts of what steps I should be taking with my child, what therapies he needs, what should the school be doing, in order to guarantee him success as an adult. I took each of his current challenges and tried to find a reasonable solution that we could try - and none of the ones suggested by the Aspergers books would work with my son! Minimize change in routines? He CRAVES that, he asks to take a new way home from school as a reward for having a good day! I was getting so frustrated that I just knew in my heart that this isn't the route we should be taking. I wasn't getting the answers I needed. That's why I'm now pursuing the gifted route to see if THOSE solutions might work. Plus, we're spending countless hours and money in therapies right now for a problem he may not even have. While the therapies in their own right may not hurt, they are taking up time that could be used for extracurricular activities such as science camp and the like that could enrich him as a gifted student. I want to make the most of every day for him, not subject him to OT that he hates and doesn't even need. But if he DOES need it, then I don't want to be the one to make the decision to cut it off, KWIM? He's at a good equilibrium right now. He hates school because he's bored (with the exception of the 1 hour a week he gets pulled for G&T), but his behavior is finally on track and his work is fine. He's only been sent to the principal's office once this year, as opposed to 2-3 times a week last year. But I also know that behavior waxes and wanes with these kids. I've heard things tend to start up again around age 8, and I would really love to know the driving force behind WHY he does these things so I'm not flailing and trying a billion different approaches when the next hurdle hits. Because that has been my MO in the past, and it's exhausting. There has to be an easier way - not a parenting manual per say, but at least a more narrowed list of options to try. That google map was invaluable. We don't live remotely near any of the psychologists listed, but we will be traveling to Denver for Spring Break next year. I will contact the center there and see if they can work with us. What would I ultimately love to hear? That we've seen this type of kid before, that my child is X,Y and Z, and here are some good resources to check out. Is that too much to ask?
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Joined: Nov 2011
Posts: 1
New Member
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New Member
Joined: Nov 2011
Posts: 1 |
WookieMouse, I was really excited to read your post. My eldest son is also a quirky gifted and we are going next week to have the Aspie part evaluated. I can really relate to what you said about not wanting to waste time on things that don't help yet not wanting to cut out things that might help. It is so hard to know what to pursue. As for the no currency issue, when my son (who is now 8) was younger, I tried every strategy to motivate him I could find and most of them just did not work. Three resources I did find very helpful were Gordon Neufeld's The Power to Parent DVD series - not explicitly targeted at gifted kids but all five of his kids were highly gifted and his approach really worked for my son. The Explosive Child by Ross Greene This article by Barbara Probst http://www.davidsongifted.org/db/Articles_id_10441.aspxGood luck on your journey! Sarah
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Joined: Apr 2010
Posts: 2,498
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Joined: Apr 2010
Posts: 2,498 |
Hi Stacy, My DS9 has AS. Here's what I think. He claims he doesn't like other kids because most of them are boring. That may not be something to take at face value. It is really important, regardless of IQ, to be able to have reciprocally rewarding relationships with peers. This statement may mean "they're boring" or it may mean "I don't know how to deal with them." Or both. A lot of the previous issues are no longer relevant. His fine motor - which was an issue at the time of testing - is now completely at grade level. He has matured and no longer bumps into or is aggressive with other kids. And we've eliminated his tantrums and hyperactivity through diet (Feingold, plus removing casein, gluten and soy). He still doesn't have a currency, but I have found that he will listen to me and comply if I provide a rational, logical explanation. How are the peer relationships? Does he seek the company of other kids, and does he know how to engage them? Do you ever get compliance without lots of explanation? You didn't say a lot about the symptoms you were seeing, so I'm not going to attempt an armchair diagnosis. There is a huge range of how the symptoms are expressed in AS-- it's a "syndrome," which means a bunch of features that tend to occur in clumps, but almost nobody has them all, and each person's expression of it looks different. But elsewhere in this thread you expressed concern about doing the wrong therapies. I would never make decisions about therapy based on a diagnosis anyway-- I would make them based on what symptoms we want to ameliorate. I wouldn't send a kid to OT because of an AS diagnosis-- but if he had a funny pencil grip, poor motor planning, etc., I would send him. I wouldn't send him to social skills therapy because of the diagnosis alone, but if he had trouble connecting with peers, I would. And so on. I'd suggest you not get hung up on the diagnosis, and instead take a frank look at what issues you and his teachers are seeing. If there are things that look like they need work, find a way to work on them, and use the diagnosis to get help for that if it's useful. And change the plan as things improve or different issues crop up. DeeDee
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Joined: Jul 2011
Posts: 131
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Joined: Jul 2011
Posts: 131 |
We've dealt with the labels by others who claimed to be professionals in the past with my son and like you I just had that gut instinct that they weren't hitting the mark. They were trying to fit him into a check the box so they could feel like they were giving us answers but they really didn't know what to make of him. Although my son does have currencies that we can use to work with his behavior, they aren't what the normal school system tends to use or think work. We did as you are doing in Spring, found a testing place that was knowledgeable about the gifted child and I highly recommend the GDC in Denver Best of luck on your journey!
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Joined: Jun 2011
Posts: 38
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Junior Member
Joined: Jun 2011
Posts: 38 |
Wookiemouse -- you say that in preschool he was "hyper" and "inattentive" -- I assume that a diagnosis of ADHD-hyperactive and or inattentive was at least discussed?
You may also want to look into Executive Function Disorder.
I HIGHLY recommend "The Explosive Child" mentioned by another poster, too.
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