Anyone think they could be dealing with a Sluggish Cognitive Tempo diagnosis in the future?

I recently saw a clip of Dr Barkley saying that in the new DSM-V there will be no more ADD-PI.  I have been reading for years ppl (mostly with hyperactive diagnosis themselves) yelling about how PI should not be separated from ADHD at all, and I don't get it because my husband has the PI diagnosis and he couldn't appear more different from the hyperactive folks if he tried!

So anyway in this clip, and I have been researching ever since but I find the info out there on SCT to be thin and confusing, Dr Barkley says the DSM-V will categorize ADHD as with and without conduct disorder.  He seemed to believe that everyone with ADHD is combined with both hyperactive and inattentive symptoms and there will also be a group called sub-threshold ADHD for the people who missed the hyperactive symptoms by 1 or maybe 2. 

My husband only has 1 or maybe 2 hyperactive symptoms, and was never hyperactive as a child, so based on what I am reading (and if I am making correct sense of it) he will no longer be categorized as AD/HD.  Apparantly the future of ADHD will require that you are now hyperactive or were as a child.  The only thing left for the inattentives (and Dr Barkley is opposed to it being called ADHD of any type) is SCT.  He says it is a very different disorder.

Now my husband fits SCT symptoms pretty much 100% but they aren't really substantially different from Inattentive ADD so that makes sense.  The claim, though no one seems to know a ton about it, is that SCT is an input disorder whereas ADHD is an output disorder.  My husband has poor hearing due to a job injury and several in his family have auditory processing disorder supposedly (but also really poor hearing sometimes requiring hearing aids) but his hearing is the only point of input which could be a problem and his issue more than anything is extrapolating incorrectly from what he hears. 

He is constantly saying 'I thought you wanted to know x' and I will say 'But why do you think that when I said nothing of the sort?  what did I say?' and of course my words have nothing whatsoever to do with what he inferred/assumed/or decided arbitrarily that I or someone else 'really meant'.  This is a frustration to me, but sometimes causes real problems for him with work and other responsibilities he has because what he assumes based on a convo is not what the other person believes was decided. So is that an input disorder? And there is no way that all his issues arise from this one input problem which I thought was poor hearing combined with a desire to assume rather than listen and think it through.

The other thing of concern to me with SCT is that I was told stimulants do not help them, which, is not being born out by anecdotal evidence accd to ppl who are believed to have it (as far as I know it isn't even a diagnosis yet), but if it becomes clear that stimulants do not help SCT, then we are in no man's land because stims definitely have helped my husband.  And for those who remember his idiotic little test a while ago, he went off them to see if anyone noticed a difference and we ALL noticed a difference without knowing why since he kept going off them a secret!

I have believed after that point that we were both on board with the 'meds make a big difference' bandwagon, but when we had this discussion about SCT possibly being our diagnosis of the future and I told him what I read about stims supposedly not helping, he said "well really how much difference do they really make anyway?"  like he notices little benefit and I was SHOCKED.  When we've talked about his meds and dose and especially after his trying to do without them fiasco, our convo was that we've both really noticed benefits with the meds.  I just feel at a loss today with both him, his diagnosis, and what I am believing is an attitude about taking meds.  He says he has no additude, but  'how much diff do they make anyway' definitely sounds like he doesn't think they help much.

Anyone know where we are supposed to go from here? 

bespoken's picture

I think I have this...

I seem to be the off-brand for two major diagnoses... but one of them is the SCT form of ADHD. I've talked to my doctor about it, and he seems to be "on board" with the new diagnosis. But I don't really know how he can help. My biggest fear is that a lot of the advice given on this site won't be effective for me. I just don't have any motivation; it's not so much disorganization. I could look at a check list of things to do, not feel up to it, and then sit on the couch and do nothing, or play with something that amuses me for a few minutes, then do nothing. It's worse because my wife already thinks I just "do what I want," and doesn't even realize I don't even do that, and if I don't follow the advice given for ADHD, well, it must be because I don't WANT things to get better. 

Someone wrote that telling someone with depression to just try harder to feel better is like telling someone without  arms to punch themselves in the face until their arms grow back... I sort of feel that way about my disorder and motivation... But if you find things that work particularly well for SCT or have some ideas of how its treatment (in marriage especially) is different from the standard ADHD-PI, then I'd love to hear it.

 

Pbartender's picture

Sorry...  This caught my

Sorry...  This caught my eye...

"And for those who remember his idiotic little test a while ago, he went off them to see if anyone noticed a difference and we ALL noticed a difference without knowing why since he kept going off them a secret!"

...and in my own brand of hyperactive fugue before my meds kick in, I feel compelled to elucidate...

It may have been terribly, terribly annoying for the rest of you, but the way he conducted this "experiment" actually gives more weight to the results.  In scientific circles, what he did is called a "single-blind" experiment...  The experimenter (him, in this case) knows everything that's going on, but the test subjects (you) don't.  Any information that may skew the results are withheld.   The fact that you didn't know he wasn't going off the meds means that you weren't looking for a change that might not have been there.  By keeping it secret, he removed the expectation that there would be a change in his behavior.  That you noticed a change anyway is telling.

The only more stringent way of conducting the experiment would be a "double-blind", in which he wouldn't know either...  He would still be taking pills, but some of them would be placebo pills that did nothing.  A third party -- perhaps his doctor -- would have the key that would tell everyone which pills were which after the fact.  This would also eliminate any behavior bias from him (was he subconsciously acting differently when he stopped his meds, or was it really the ADHD?), making the results even more credible.

Okay...  Not to absolve him, or minimize the trouble it caused, but I've got that out of my system now.

 

Pb.

I understand that it did add weight to the result

but even his doctor was really irritated by what he did and the way he did it (though naturally not nearly as irritated as me!).  He did no self analysis, he monitored and/or recorded absolutely nothing, therefore him being the only one clued in made everything worse.  He apparantly decided to to go on strictly how he 'felt' and he while he believes all of us who say he WAS different, he still never experienced that for himself.  It probably wasn't helped by the fact that the only person really asking him what was wrong with him was me.....for yet another thing that annoys we nonADDers to death, everyone else asks US what the heck is wrong with you when you are asking contrary to type.  It is really good that I my husband doesn't see me as the enemy in his treatment or he likely wouldn't accept my word for the fact that everyone was asking.

Another things about this adding weight is why I am so irritated by his "but what real difference to the meds make anyway" comment yesterday.  I mean if they didn't make any difference, why did we ALL notice?  When that is pointed out, he does agree 'oh yeah right I went off and everyone noticed' but I can't help wondering in his heart of hearts if he really just thinks it makes little difference cause he sees and feels little difference...........and then I wonder of course, if he sees and feels little difference are the side effects worth it?

I have found some info from Dr Barkely that about 20% of SCT patients will respond to low doses of stimulant meds which makes sense in our situation as he takes much less than most ppl report taking, and many of the hyperactive patients seem to require much higher doses.  That makes me feel better about our almost definite eventual change to SCT since from what I am reading even sub threshold ADHD will require at least 3 or more hyperactive symptoms.  We have 1 and maybe 2 if you stretch hard, so it looks like we will definitely no longer be ADD once the DSM-V comes out.

That leaves me feeling a little adrift.  I mean we won't even belong in this little community anymore will we?

My son was diagnosed as

My son was diagnosed as having ADHD in the second grade.  In my years of research on the disorder, Dr. Russell Barkley has become my hero and go-to guy for answers.  This morning while watching his  3-hour Essential Ideas For Parents lecture that you referred to, I also took note of the SCT statements he made.  I was diagnosed with ADHD 2 weeks ago, and haven't had my prescription filled yet, because the diagnosis just doesn't fit right.  I feel that SCT would be a better fit.  I liken myself to one of those birds who tries to fly into the closed window over and over - Even though I understand that I'll most likely fail in my attempts in life, I try and try again, although it hurts.  I'm married and have 3 children whom I adore.  I want the best for my famly, but just can't seem to keep a clean house. I hate the mess, but I also can't make it go away.  I love organization, but putting the concepts into action is crazy.  I start out with gusto, and then just trail off without even noticing.  I've been called useless, stupid, lazy...It sucks, but the drive to succeed is still there, so I push on.  I've spent the morning trying to research SCT, and was disgouraged at the lack of answers.  I may have found my diagnosis that doesn't have a treatment?!  I admit I almost cried.  This post has given me hope.  I'm going to try the Concerta that was prescribed to me, as it is the low dose, and DR. B said in his lecture that only the low dose seems to make any difference if at all.  I'm crossing my fingers and hoping that it helps me as it has your husband.  I want so badly to at least get close to my potential.  Thank you so much for taking the time to set up this site, and for sharing your personal struggles.  You guys aren`t alone, and now I know I`m not either.  THANK YOU!