Son went in for diagnosis yesterday

[Uminchu]

We finally got our son seen by the neurosurgery department of our local university hospital.

He still has about 3 days of testing left, but the doctor's initial impression is that our son doesn't have ADD. She basically said, "sure, he's a bit of a dreamer, but if his reading and writing were at grade level you wouldn't be in here." [Which is true] No impairment, no disorder, right?

She was basically like, you and his teachers say he doesn't pay attention. But he paid attention today, so the problem must be elsewhere (like he hates reading because he has a reading disorder, so zones out).

I showed them his math work from school, and how he seldom finishes his worksheets, although the problems he does are usually correct. So his mind works a little slower than other kids', I was told.

However, we live in Japan and this was a Japanese doctor (two of them, actually). I had to explain the concepts of "sight words" and phonics to them. This makes me a bit dubious about their ability to diagnose a reading disorder in my son.

Both doctors did seem very knowledgeable and caring, so maybe it is just me. They told me that I seemed to have ADD, and implied that maybe I was projecting onto my son -- which would be ironic, because I only found out about my own probable ADD because I was researching it for my son!

[scuro]

Duh...what sort of examiner is this? If you have a different setting, you get different results. How can they even think that since he was good in a lab, in a one on one setting, that there is no disorder? You measure behaviour in the setting where it is important, and that is why behaviour checklists are necessary. Sounds like they are decades behind in Japan.

CAPP or innattentive subtype ADHD (which has the nickname SCT) would fit what your describing. And please don't tell me that the Innattentive Subtype of ADHD can't be impairing. A good first year Psych student would know more then this person.


This is what Barkley writes about it.

"Now I want to come back to this group that we call Inattentive AD/HD. We used to call them ADD without Hyperactivity. These days some people are just using the term ADD for them. I don’t like that. Part of the problem with using that term is that that was the old term for AD/HD over 10 years ago, so it creates a lot of labeling confusion.

ADD and AD/HD are the same thing. ADD is the earlier, 1987 term—goes all the way back to 1980, in fact, whereas AD/HD is the more recent label.

So let’s talk about this Inattentive type: the kids who come to see us who don’t show problems with hyperactivity, who aren’t impulsive. What do we know about that subtype? We know enough that several of us in the research community have taken to arguing that this is a different disorder. This does not belong in AD/HD. This is not AD/HD. This is a real attention disorder with real information processing deficits, and it has little in common with the other two kinds of AD/HD.

The Hyperactive type of AD/HD and the Combined type of AD/HD are the same disorder. You’re just catching it at different developmental stages. Kids start out with Hyperactivity; the attention deficits come within a few years after that, and then they move into being the Combined type. But these children, on the other hand, are a different story all together. Why do I think this is a different disorder? Why do some of my colleagues agree with it? Why do the rest of my scientific colleagues certainly agree that this is a qualitatively different group of children? Whether you view them as a different subtype or as an entirely different disorder is less of concern to me than that you understand these are not the same kids. They do not have the same risk, the same co-morbidities, the same causes and the same outcome, and it is likely that they do not respond to the same treatments the same way.

But we will not know any more about treatment if we don’t view them differently, because everyone will assume as you may do, quite naively, that the treatments for one apply to all the subtypes, and they don’t. We have discovered a new disorder and it does not belong here. It needs its own name and its own criteria and it needs to get out of this category known as the disruptive behavior disorders, because it has no affinity for them. So let me show you why many of my colleagues are now slowly coming around to an idea that 10 years ago I argued for. This is a different disorder. Why do I think it’s a different disorder? Because these children come in with the opposite symptoms. Instead of being hyperactive, intrusive, distractable, they’re lethargic, slow-moving, hypoactive, spacey, daydreamy, quiet, passive, withdrawn, confused, in a fog. They are the polar opposite of the AD/HD child in their clinical presentation. This is not an impulsive, disruptive, intrusive, aggressive, emotional, naive child. This is a kid who is staring, daydreaming, confused, and not processing information accurately. This is a real attention deficit, if attention means information processing. These kids have a processing deficit. AD/HD children do not. Do not confuse these two groups. They do not have the same problems with paying attention.

Other things we see in these children: when we bring them into the clinic, and we run them through a battery of neuropsychological tests, they have deficits in an area we call selective attention. Selective attention is how quickly you can deduce what’s important from unimportant in a spatial array of information, how fast you accurately process information coming at you. AD/HD children have no trouble with selective attention. And by the way, let’s put an end then, to this metaphor for AD/HD that it’s a filtering problem. Because it isn’t. Real AD/HD has no trouble with filtering, selecting information. AD/HD children perceive the world exactly as everybody else does. These children don’t. These kids have a selective attention problem, which by the way explains something that we have found in about six different studies. These kids make more mistakes in academic work than AD/HD children do, many more mistakes. The problem that AD/HD children have is with productivity; number of problems attempted. The problem with these kids is accuracy: the number of errors made. These kids have a real problem with input coming into the brain, how quickly they can handle it, how accurately they can select it out, and deal with it. These children have memory problems. AD/HD children do not. These children have trouble with getting information out of short-term and longterm memory and doing it correctly. It’s especially so for long-term memory, so that they show a very erratic recall of information. AD/HD children, if they have a memory problem, it’s going to be in a very unusual form of memory we’re going to talk about later today. But this is traditional long-term storage, and these children have some trouble with that, probably for the same reason. They’re not getting information out of memory any more accurately than they’re processing information coming into the brain.

There are problems with selection, with filtering, with focusing their attention. These children have a very different social profile. The traditional AD/HD child is often a rejected child, because they’re immature and emotional and hotheaded and demanding and controlling and impulsive and often aggressive, so that when we compute a social profile of the AD/HD children they often wind up as being the least liked, the least popular and most likely to fight. That is their peer group profile. That is what Ken Dodge and his profile of peer acceptance views as the rejected child. And 50 percent or more of AD/HD children are utterly rejected by their peer group; these [inattentive] children, very different picture. These children are overlooked. In Ken Dodge’s taxonomy of social problems, they’re neglected. Why? Because they’re passive, uninvolved. They’re staring, daydreaming, hypoactive, absent-minded, passive. Unengaged is a better term for them. They’re not disliked by the other kids. They’re not rejected by them. The other kids just don’t know them. They’re not engaging. They’re not out there participating. They’re just kind of passive kids. They have more friends than AD/HD children have, actually. These kids tend to be neglected, not rejected. It’s a very different social profile.

Other differences: there is no affinity of this disorder for Oppositional (Defiant) or Conduct Disorder that we can tell. They basically have the same base rates as the normal population. But many AD/HD children are likely to go on to develop Oppositional Disorder and Conduct Disorder. Forty-five to 55 percent of AD/HD children develop Oppositional Disorder by age 7, and another 25-45 percent move up to Conduct Disorder by ages 8 to 12. AD/HD goes with Oppositional and Conduct Disorder. The inattentive group does not.

You see another reason why they don’t belong in this group? Those three disorders—AD/HD, ODD, and CD—are all part of a larger category we call the disruptive disorders. The inattentive group isn’t and it shouldn’t be there. Other differences that we see: by definition, of course, these kids are not impulsive. They don’t have any difficulties with inhibition. These children do not respond to stimulants anywhere near as well as AD/HD hyperactive, impulsive children do. Only about one in five of these children will show a sufficiently therapeutic response to maintain them on medication after an initial period of titration. Oh, you’ll find that about two-thirds of them show mild improvement, but those improvements are not enough to justify calling them clinical responders, therapeutic responders. Ninety-two percent of AD/HD children respond to stimulants. Twenty percent of these children respond to stimulants. And the dosing is different. AD/HD children tend to be better on moderate to high doses. Inattentive children, if they’re going to respond at all, it’s at very light doses, small doses. So the drug response is different. And that’s all we know.

[At this time] there are no other studies of treatment of this group—none. The only studies are five involving medication and mine was the only one that tested multiple doses with a placebo control. There are only two pages in my parents’ book, Taking Charge of ADHD, on this group, and it tells you what I just told you. This is what we know. These are different kids. This is a different disorder. Stay tuned. We don’t know what to do with them. It’s up to you. You’re just going to have to cobble together some help any way you can and hope that it works, because there is no science beyond what I just told you.

They may have different causes. They certainly have different family histories. Those children tend to come from families where there are more anxiety disorders and learning disabilities. AD/HD children come from families where there’s more AD/HD, Conduct Disorder, antisocial behavior, and substance abuse. The family histories of these two groups are not the same. Now, we have to be careful here, because the Inattentive group, it turns out, is rather a wastebasket group of kids. First of all, in that group are the true Inattentive kids. But also in that group are AD/HD children who came in one symptom short of being in the Combined group, right? They’ve got six inattention and five hyperactive symptoms, and according to the DSM, if they don’t have six, they’re not in the Combined type. Well, yes they are, and you should think of them as being Combined type children, even if they come up one symptom short. Don’t put those kids into the Inattentive group.

The Inattentive group in our clinic is for kids with three symptoms or fewer off of that HyperactiveImpulsive list. Any more than three and you’re better off thinking of them as what we call subthreshold Combined type children. There’s another group, the group that starts out being in the Combined type and by adolescence or adulthood are no longer so hyperactive, but they meet the criteria on the Hyperactive list. Now you would flip them over into the Inattentive type. Don’t do it. You always think of them as Combined type.

So, bottom line is this: If any point in your history there was a whiff of problems with inhibition and impulse control, you’re a traditional AD/HD Combined type kid, and it shouldn’t matter what the DSM is telling you about cut-off scores. Clinically that’s how you would approach that child. That’s a Combined type kid. And you reserve this Inattentive group for kids who have never in their lives had trouble with inhibition. Those are the spacey, daydreamy, confused, in a fog, sluggish, hypoactive, slow-moving group. And as long as you conceptualize them that way, you won’t make any clinical mistakes. But if you follow the DSM as it’s written—perhaps you have OCD and you just have to follow all those criteria, just as they’re written—then you’re going to get yourself into some trouble.

Because remember, the DSM was not chiseled in stone in Israel. It’s a set of guidelines developed to help make clinical decisions, but it’s to be used with clinical judgment and understanding of the criteria. Okay, that’s just to resolve some confusion.

And by the way, I said the Inattentive group was a wastebasket. Why did I say that? Inattention is nonspecific. Inattention is unhelpful in defining what disorder you have, because most mental disorders produce inattention. So if somebody walks into your clinic and says, you know, I’m having a lot of trouble concentrating, can’t pay attention, can’t finish work, you have no idea what they have. You don’t automatically say, oh, that’s AD/HD, I’ve heard about that. This could be a psychotic. This person could be a substance abuser. This person could have a generalized anxiety disorder or panic attacks or major depression or bipolar illness. How the hell do you know what they have? For now, just know that the Inattentive type of AD/HD is a real wastebasket category of really inattentive children, along with children who have other disorders that are producing their inattention. There really is an Inattentive group out there, but they have a different disorder, and it’s not AD/HD".

Now does that sound like your son?

[Uminchu]

Originally Posted by scuro

Now does that sound like your son?

In a lot of ways, it does. One thing is that he is actually quite popular at school. I would call it charisma -- people are drawn to him. So he is not really neglected or unnoticed.

His mind can also work very quickly when he has some pressure. Like when I time him on his flashcards, he goes through them very quickly. Setting new records...

Whatever the doctors said, I am convinced that at the least it isn't just a reading disorder. There are so many other things. And I definitely see your point that just because he focuses in a novel situation doesn't mean his zoning out is because he hates reading.

But I can kind of see their point that without the reading problems, we wouldn't consider him impaired. He would just be a daydreaming, somewhat sub-par but still average performer.

[scuro]

Impairment can be situational and different over time...so your sons impairment now may be only a significant discrepancy between potential and achievement. In the future it may be become much more noticable as he gets into the higher grades where the sheer amount and the complexity of information being learned can be overwhelming. Students under stress and who do poorly at school, can change suddenly in their mood and behaviour.

Not to say that this will happen to your son or that he even has ADHD. I just think these examiners are not the right people to make the call.

[Uminchu]

Originally Posted by scuro

Impairment can be situational and different over time...

I agree with you here, but this is where the doctors implied I was projecting onto my son. I told them how I was also considered to be "learning challenged," until they decided that I was "smart but lazy" starting in the third grade. School was not a pleasant experience for me. I was able to bluff my way through for a while on charm, but when teachers started demanding real work the game was up.

I said I could see things playing out this way for my son, and I wanted to avoid it if at all possible.

Objectively, I can see the projection there myself. After all, my son is in the second grade and most of these things have not yet come to pass. But seeing the similarities now, I am quite worried.

[scuro]

This projecting thing doesn't instill any further confidence in their ability to diagnosis ADHD. Can they spell G-E-N-E-T-I-C-S?

Did they at least have you fill out a behaviour checklist or have you give one to one of his teachers? Did they want to look at report cards? How are they assessing how significant a problem daydreaming is in the classroom? I missed all of elementary school daydreaming.

[Uminchu]

Originally Posted by scuro

Did they at least have you fill out a behaviour checklist or have you give one to one of his teachers? Did they want to look at report cards? How are they assessing how significant a problem daydreaming is in the classroom? I missed all of elementary school daydreaming.

Yes, I did the behavior checklist. I also showed them all his report cards since starting elementary.

Here is a typical comment:

I have enjoyed having Sage in my class this summer. He is friendly with his classmates and brings wonderful ideas to our lessons. Sage needs to continue to improve his writing and reading skills. He works well but needs to improve his listening skills at all times.

I asked his second-grade teacher for a letter describing his problems in class, but all she gave me was his work so far this year and his placement tests.

I also wrote up a list of behaviors his first-grade teacher described to me during our many meetings (she has moved back to the US and I couldn't get a hold of her for a letter):

• Doing work in class, he is "always" the last one to finish, and often does not finish
• He often "zones out," staring into space
• Sometimes turns in worksheets completely blank
• After she explains how to do something, he will raise his hand and say "I don't understand."
• When spoken to, he often appears to be ignoring you or to not hear you
• She recommended he be held back because he could not keep up with the other children in class.

[scuro]

It would be interesting to know where his IQ scores are at and how his hearing is.

So being so below class performance, in grade one, that the teacher recommends retention, doesn't show impairment? What would the poor kid have to do to get noticed?

Strange, it doesn't sound like they actually requested any information about his behaviour at school and I am also assuming that they didn't request that a teacher fill out a checklist.

[Uminchu]

Originally Posted by scuro

It would be interesting to know where his IQ scores are at and how his hearing is.

His hearing is fine -- we had that checked pretty early on. Have never done an IQ test, but he appears "bright." Even the doctors said he seems very intelligent -- definitely not retarded, they said.

So being so below class performance, in grade one, that the teacher recommends retention, doesn't show impairment? What would the poor kid have to do to get noticed?

Be hyper? That's only half facetious.

But the school's main reason for recommending he be held back was his low reading scores. He does read below the level of his peers, but after having volunteered in class and having had most of his classmates read to me one on one, I would honestly say it is a matter of degree and not a major difference.

Strange, it doesn't sound like they actually requested any information about his behaviour at school and I am also assuming that they didn't request that a teacher fill out a checklist.

No, they didn't ask for anything except the checksheet from me -- but I gave it to them anyway.

[mctavish23]

Here's one of the actual questions asked of Russ Barkley at the March teleconference on ADHD in kids.

A psychologist phoned in and asked something to the effect of " How is that whenever I get a child who is coming in for an ADHD evaluation, they're perfectly behaved in the office?"

His response was to qoute a research article that said that exact things happens a significant amount of time. In fact, he said it was to be expected.

I can't asnwer specific questions but keep in mind that Inattentive type often shows up later than Hyperactivity.

If you're (meaning the reason for the referral) looking at strictly ADD-I, then a clinician needs to assess "Working Memory" with the Behavior Rating Inventory of Executive Function (BRIEF) and NOT the subtest scatter from the WISC-IV.

There are other tests to give besides the BRIEF and there's nothing wrong with getting a baseline of cognitive function (intelligence). JUst don't use the IQ test to make the diagnosis.

Russ's ADHD : A Handbook for Diagnosis and Treatment (Third Edition ) should have just come out at the end of August on Guilford Press. It has the "checklists trumpt test's" data in there to support that.

I haven't seen it yet but thats what he said in March.

There is a Working Memory Index (WMI) on the WISC-IV, however, it doesn't compare to the BRIEF.

The other 2 outstanding checklists for kids are : George DuPaul's ADHD-IV checklist and the Conners Parent Rating Scale.

The current state of the art, meaning research supported, is that teachers checklists only match parents (on average) 3% of the time!!!!!

Im qouting Dr Barkley here.


The BRIEF is the best diagnostic tool available and its teacher /parent correlation is (I think) somewhere between .32-.34.

That sucks

[Uminchu]

Thanks a lot for the reply, mctavish.

To be honest, a lot of it looks like alphabet soup to me. And I suppose this information will take a couple of years to filter into the backwaters of Japanese medicine.

One thing I should mention is that a lot of the behaviors mentioned by my son's first-grade teacher are much better after some simple interventions I requested, like sitting him in the front of the class, ensuring frequently that he was paying attention, and making sure his day's homework was written in his notebook. But those were the initial symptoms that got me off my butt to research ADD.

[CJsMOM28]

Hi Uminchi

You have gotten alot of great information here, there isn't much for me to add, just that I would definetly get another Doctors opinion even if it means seeing two or more Doctors. I had to do this with Cody, I had Doctors telling me it was just anxiety, then I had Doctors tell me he was ADHD , which is true, but it took quiet a while for a Doctor ( our new one) to see that Bipolar was a big issue. Stick to your guns, he is your Son, and you know him best and if in your heart you feel there is more to this than what these doctors are saying go with it. I hope that his teacher does her job as well, I know you've had some problems with her, keep at em Girl! Keep us posted, Your in my thoughts!

[Uminchu]

Originally Posted by CJsMOM28

You have gotten alot of great information here, there isn't much for me to add, just that I would definetly get another Doctors opinion even if it means seeing two or more Doctors.

Thanks for the support, CJs. My son isn't done with his testing, though. There are still about three days of testing left, to be spread over several weeks, before they will make their decision. It's just that after the first day, the doctor said she was inclined to focus more on a reading disorder than ADD. I'm like hmm... but we'll see.

It's interesting, you're not the first person in this forum who has thought I was a woman (I'm a man). I take it as a complement because I assume it means I come accross as sensitive or some other nice quality. But maybe in future I should make more fart jokes or do other manly stuff to avoid confusion.

[mctavish23]

Thanks for the response. It sounds like things are going well and I'm happy for you.

You're also correct that "checklists trump tests."

As a child progresses with age and grade levels, the complexity of the material presented and the related cognitive demands required to meet those, increases substantially. In order to successfully meet those demands, the child's Executive Functions need to be at an age appropriate developmental level.

As you know, ADHD is a developmental disability,in that the impairments represent delays relative to the ADHD child's peers.


Good luck.

mctavish23 (Robert )

[scuro]

Uminchu,

When McT said BRIEF my first thought was underwear.

Basically what McT said, if I may paraphrase;
1) behaviour in the testing enviornment counts for squat.
2) that your child may have greater difficulties as he gets older.
3) If he is going to be tested, the IQ test is good info but they shouldn't look for a diagnosis for ADHD from it. He likes his BRIEF(S)
4) ..and really checklists are the better way to support an opinion for diagnosis, anyways.

Does that help?