Sluggish Cog Tempo + ADHD (Dr. Barkley's study)

[dwolen]

From the October ADHD Report, Russell Barkley, editor
R. Barkley summarizes his large study of sluggish congnitive tempo(SCT)/ADHD in adults. Several studies recently have looked at SCT in children. I will quote from the conclusions for a summary some of you may find interesting.
Russel Barkley is a key note speaker at the Nov. CHADD conference, so I'm betting this is what he will talk about. So, you've got advance notice!

"Sluggish Cognitive Tempo is a Distict Disorder from ADHD in Adults
A total of 1,249 aults completed the surveys, 49,9 males, 50.1 females, ages 18-96, in a sample that is representative of adults in the US, in age, sex, social class, employment status, maritl status, etc.
5.1% of the sample and approx of the adult population of the US have SCT, with 54% of those with SCT also having symptoms of ADHD inattentive, and 46% of those having ADHD -In having symptoms of SCT. Only~8% ADHD hyperactivity/implusive type had SCT. 43% of those with ADHD combined type had SCT.

SCT needs more research to better define it but so far, it is characterized by "daydreaming, staring, mental fogginess and confusion, slow movement, lethargy, apathy, and sleepiness.
Barkley says: What is the core nature of SCT as a disorder? The lethargic, slow moving, underactive sx imply that SCT might be related to disorders of arousal, such as narcolepsy. In contrast, the most prominent or discticntive symptoms of daydreaming, staring and mental "spaciness" suggest an alternative explanation. ...SCT could represent poorly regulated or pathological mind wandering. (me:!!!) Mind wandering is comonplace and may be beneficial under certain conditions. That is, it may allow the problem-solving capacity of the executive system to focus on salient personal concerns while the individual engages in relatively automatic actions toward familiar goals in the environment...BUt when poorly regulated, mind wandering has been linked to adverse effects on the executive funcitons (reduced meta-awareness or self monitoring, of goal pursuit, diminished working memory capacity available for pursuing the external goals, etc., and on academic performance. Future research should examine this possibility further-is SCT a disorder of mind wandering?

Overall, ADHD is the more impairing disorder, in psychosocial functioning, but SCT is more impairing in self-organization and problem solving and in the occupational domains. SCT was assoc. with less household income and less aducation that ADHD. ADHD was more impairing of driving that SCT. ADHD symptoms diminsh with age, but SCT symptoms persist."

references: THE ADHD Report, Oct, 2011
Barkley, R.A. (2011d) Differentiating symtpoms of sulggish cognitive tempo from attention deficit hyperactivity disorder in adults. Journal of Abnormal psychology, Advance online publication. doi:10.1037/a0023961



from Dwolen: I hope by posting this really brief and inadequate summary, I have not confused you too much!
But stay tuned to the CHADD conference reports in November.

[mamak]

My son has ADHD I and in his educational evaluation he was described with slow cognitive tempo. At his last Dr. appointment for meds the Dr. increased his medication but then mentioned that there would come a day when he would like to see him go off of his medication because when you get older you probably won't need it. In my mind I thought WHAT? I was dxed with ADHD in my 40's. What is described above is very much how I am. I was treated for depression instead of ADHD for many years....I know some kids go off meds when they get older but I honestly if my son is anything like me I don't think my son would be able to further his education and or work.

Thanks for sharing this was helpful.

[healthy11]

Thank you for posting this, dwolen.
I know DSM-5 isn't released yet, so things might change, but from everything I've heard, they still are NOT going to include SCT as a separate disorder, no matter what Dr. Barkley's findings have shown.
I am surprised at his findings, however, that SCT is present in about the same percentage of people with ADHD-inattentive (46%) as people with ADHD-combined (43%)...but I suppose it's all in the way SCT is defined...up until now, I've NOT thought of it being "a disorder of mind wandering" but instead more of the mental fogginess and confusion, slow movement, lethargy.
Clearly, further study is needed...

[dwolen]

Mamak, I am glad you found it helpful.
Changing the DSM should be a process that requires lots of study, in my opinion. Psychiatry has an obligation to the public to use lots of criteria and studies before they make a pronouncement. I am reading Sybil Exposed, an book that reveals a scam of one of the most famous cases of "multiple personalities." The author includes a brief history of psychiatry from ~1880-1980, not a pretty picture. So much harm done with so little or no evidence based "theory." Well, theory is not the proper term, nor is hypotheses, opinion is the best term. So much harm done based on someone's acedotal based opinion or deductive reasoning based opinion.

[keepthefaith]

The private psychologist used this term in our meeting today - I will read more about it - thanks for all the great info on here.

[SharonF]

I strongly believe I am married to someone with Sluggish Cognitive Tempo--and that both of our kids have it.

I am not fond of the "fogginess" definition. And my dh, ds and dd are definitely not lethargic or slow moving. Just the opposite.

So why do I think they have SCT?

SLOW cognitive processing speed. Especially if the information is only verbal. If information is visual or multi-sensory, their processing speed increases dramatically.

After close observation for years, I don't think they are poor listeners. Or that they are lost in their own thoughts and are not paying attention. I believe the words they hear or read often don't connect quickly and fully to complete meaning. The brain doesn't have time to fully process the words.

A teacher once described my dd as a "slow learner." After I got past feeling insulted, I realized there is occasional truth to that. And our son once joked that his sister must really be a "dumb blonde" who dyes her hair brown to hide her blonde-ness. While she's not blonde and not ditzy, she she has more than her share of "DUH!" moments.

What might that look like in real life?

When dd was in 8th grade, she was working on a history lesson with a remedial reading teacher who was helping with comprehension. The teacher called me all excited because dd had said, "I get it!! They called it World War II because nearly they entire WORLD was involved."

This was such an "ah-hah!" moment for dd. And the teacher realized how important it was. Most 13 year olds would have connected the word WORLD to the meaning years earlier. But for some unknown reason, dd had not. This apparently has been the norm for her all of her life, not the exception.

Just last week, she was writing a paper about coal ash spills for college chemistry. She said, "Is that why they call it groundwater--because it's water under the ground?" Remember, she's 22 years old, graduated cum laude from college, and is now taking more coursework to apply for a doctorate program. She got As in most of her college classes including Environmental Science and Biology.

When she has one of those "DUH!" moments, my husband often jokes that he wants his tuition money back.

These "DUH" moments happen frequently for her. She's heard phrases like "World War II" or "groundwater" all of her life. But her mind doesn't take the time (or doesn't have the time) to break each part of the phrase into smaller chunks of deeper meaning.

Make no mistake, she is quite intelligent with a nearly photographic memory. But her mind's slower tempo for cognitively processing certain types of information, mainly verbal, often makes it harder for her to "connect the dots." She is on ADHD meds and she says they help her immensely with concentration and thinking. But she still has plenty of "dumb blonde" moments.

My husband, also a college graduate, takes longer to do some basic or routine tasks. Like entering data into a spreadsheet. I think he has some issues with working memory. But I also think his brain just works more slowly on certain tasks. His brain is not foggy, not confused, not spacey, not apathetic...just slower on some things. He's got a lightning-quick sense of humor and enjoys biting sarcasm. He's very athletic and runs marathons. And he has no problem with most cognitive tasks. But on some, his brain just seems a bit cumbersome and slow. And guess what, his teachers called him "lazy" and said he was "not living up to his potential."

Do my dd and dh have SCT? Depends on how SCT is defined. But I think they do.

[empeg1]

I know I repeatedly come in with comments, but here it goes. I have read the research by Dr. Barkley for years, beginning when my daughter was diagnosed with ADHD- Inattentive Type at 10 years of age. BTW, the research on ADHD is all contaminated by the fact that subjects are not screened for prenatal alcohol exposure. FASD has a higher prevalence than Autism and is now being found, by conservative methods of identification, to have a prevalence of 4 to 5 % of the population. Almost all individuals with FASD are also diagnosed with ADHD. My daughter was one and if she had been included in a research study, the results from her would have reflected Fetal Alcohol Spectrum Disorders, not ADHD, which I would not have known nor would any researcher, until she was at least 20 years old.

[keepthefaith]

Thanks Empeg; a friend of mine adopted a girl who has Fetal Alchool Syndrome. I confess, I don't know much about the sluggish tempo ADHD and DD is a product of IVF so we are pretty sure she is our DNA, my niece is autistic; I am sure our genetics play a role on my Dad's side. I also no longer know if she is ADD I .....or is she on some spectrum but I will spend as much time as I can reading and learning as much as I can.
Thanks for sharing.

[dwolen]

There is an interesting article about sluggish cognitive tempo in the NYTimes, a few days ago. Lots of controversy.
Empeg, do you think that ALL the ADHD research is contaminated by not screening for FASD?

[jisp]

I think one problem is there is this huge blurring between science and what we know about the brain and pharmacology and psychiatry. I recently attended part of a conference on gender and health care where one of my hero's the Anthropologist/psychiatrist Arthur Kleiman spoke. He pointed out that when it comes to the DSM the goal of many in the field is to create people who have chronic conditions who will live the longest. Because that is what makes $$$. He was particularly vocal about the inclusion of pathological grieving in the newest DSM.

There is no doubt that brains vary in the speed which they process information. Both extremes, slow processors and fast processors, have advantages and disadvantages.

One thing I like about somebody who is as smart as Arthur Kleiman, is that he does not feel the need to be on one side or the other. Medication has a role. Culture also has a role. Therapy has a role. and Genetics has a role. For parents and clinicians the goal should be to optimize outcomes using all the tools one has. But one must be careful to not look for a one size fits all model nor assume that if you just deal with the biology/genetics you are going to arrive at some magical solution. You will not.

Returning to extreme grief as an example: A person might not recover from a loss if they do not have a cultural framework to assist them. Medication can sometimes help somebody access a cultural framework or therapy. But it also can mask the challenge and make it harder for the person to recover. In an ideal world a clinician would be following and tracking a patient and working with them to use a variety of tools to eventually get to a point of stability where they could move on. But is it a chronic condition that needs a dx and a lifetime of medication to treat? Probably not.

[keepthefaith]

Hi again, there is so much I would like to ask on this subject and I do plan to come back to research/read more. Also, how would you find a dr. who is experienced with SCT? As of now, we have to see a new neuro to manage medication since DD is not responding - perhaps we should see someone experienced in SCT? Any tips or feedback is appreciated.

Our DD is with her Grandmom this weekend. I caught Grandma up to speed and my Mother-in-law is well read and has 80 years of life experience ; ) . She said "did you ever hear of SCT" - she is sending home the article from the NY Times (I assume it the the one mentioned above).

Since the psychologist mentioned it at the meeting I tried to do a little reading on it (hence pushing this thread up). My brain is on overload and I have been feeling under the weather so I can't absorb too much right now but I did want to see if I am following along.

Sharon, your description and experience is very similar to ours. In fact, I state in my parent report "DD is almost in a fog when doing her homework".

You said:

"I am not fond of the "fogginess" definition." - Sharon, if you see this question and care to share why you don't like the definition, grateful. When I did my report, I couldn't find another "word" to describe her. BUT, I didn't want to use the word "fog" so I agree, I am not fond of the word I used as it had a connotation that didn't sit well with me. I should have used a theasurus (Sp) - also - do your personal doctors have experience with SCT?

Empeg, I believe I now see what you are stating which is frightening: your main point (which I missed due to being sick):

"BTW, the research on ADHD is all contaminated by the fact that subjects are not screened for prenatal alcohol exposure. FASD hBas a higher prevalence than Autism and is now being found, by conservative methods of identification, to have a prevalence of 4 to 5 % of the population."

If I am reading correctly, the ADHD research is faulty because they didn't screen for FASD ?

I remember the first time i met a child with ADHD in the 80's. I vividly recall others talking about her drinking while pregnant. I'll try to read some of your other posts on topic but my question if you would like to share: is the research flawed for ADHD and SCT due to this failure to screen? I would assume that all research after the 80's would have screened for FASD? Even I can figure that out! All very interesting.  Do you recommend research of ADHD which does have FASD screening factored into the research? (Authors?) - thank you!

Sharon, also, DD has been described as a "slow learner" by the school since she was dx'd with ADHD in January 2012 (ouch, it does hurt; even the word R was used once).

At home, she is so smart, e.g. while we are sitting at dinner talking about everyday life she can keep up like a 3rd adult. A different example: She plays guitar, keyboard, and sax by ear and she only learned to read 3 or 4 musical notes this year. She 100% plays by ear and can "play that song in one note". She took the guitar, strummed it,heard something and played a rift from one of my favorite bands which she had listened to since born. I was pretty impressed. She is not a musical genius but she has a gift.

Finally, JISP, re the DSM you said:

" He pointed out that when it comes to the DSM the goal of many in the field is to create people who have chronic conditions who will live the longest. Because that is what makes $$$. He was particularly vocal about the inclusion of pathological grieving in the newest DSM. "

I have read that many psychiatrists use DSM book as a doorstop. A news report when #5 came out: 10 subjects went to 10 psychiatrists - all of them were diagnosed within an hour. All left with scripts for controlled substances (Adderall and/or meds for depression). All were diagnosed with conditions such as depression and anxiety. The thing was that the 10 subjects were sent out to play a role and it was a set up - they video taped the time with the doctors. That said, the point of report was that none of the 10 subjects suffered from a psychological disorder.

The report made me angry in that for those who do have psychological imbalances as it seemed unfair to make such a blanket generalization about psychiatry.

Also - this is great advice (I've been bookmarking comments/experiences I can relate to and this will serve as a reminder in journal):

"Medication has a role. Culture also has a role. Therapy has a role. and Genetics has a role. For parents and clinicians the goal should be to optimize outcomes using all the tools one has. But one must be careful to not look for a one size fits all model nor assume that if you just deal with the biology/genetics you are going to arrive at some magical solution. You will not." Very true. The grief example is perfect.
Thanks!

[keepthefaith]

Empeg - I 100% believe that FASD is much more prevalent than Autism - I sincerely believe that chronic alcohol and/or drug use during pregnancy is rolling the dice with someone's life.

My sister told me yesterday that she read a new research that rates of Autism continue to climb as well. All these kids with ADHD, Austism, FASD, etc. -you didn't hear about this when I grew up in the 70/80/90's. I only heard about one child with "Minimal Brain Dysfunction" - it was my brother and it was in 1978.   He was considered an extreme daydreamer and they wanted to send him to a special school - he ended up being a homicide detective!  I have to edit this:  It just dawned on me (yes, I'm blonde ) - I learned my advocacy from my own Mom who refused to listen to the school and fought them tooth and nail to keep my brother in his regular parochial school!  I'll have to call her to say thanks!

Thanks.

[keepthefaith]

Dwolen: Here is the article:

www.nytimes.com/2014/04/12/health/idea-of-new-attention-disorder-spurs-research-and-debate.html?_r=0

Edited:

I'm trying to find the Journal of Abnormal Child Psychology's January 2014 136 pages devoted to SCT but can't.

Found this:

en.wikipedia.org/wiki/Sluggish_cognitive_tempo

[empeg1]

Yes, all the research on ADHD is contaminated. There is one researcher, in Canada that screened for fetal alcohol exposure. Research on FASD and ADHD has suggested that different parts of the brain are involved with FASD than ADHD, but almost all individuals with FASD are diagnosed with ADHD. And, the federal government is now stating that FASD is more prevalent than Autism, where research, BTW, has the same flaw. Prevalence data from in school studies indicate that the prevalence is 2 to 5 %, but the way that this research was done it still underestimated the prevalence of FASD. The researchers go into every 1st grade class in a major school district and evaluate every child who presents as small in stature or has a small head. The above are features of the syndrome of FAS, which makes up about 10% of the full spectrum of FASD disorders. Information from the lead author in the multi-site and state research going on in school districts in the country has communicated, btw, that the prevalence with 6 years old in the San Diego Unified School District is almost 4 % of all 1st grade children have a FASD, again, which is a conservative figure. FASD is a major public health concern that is typically misdiagnosed, as ADHD, Autism, Bipolar Disorder, RAD, ODD, and personality disorders.

[dwolen]

I listened to a 12 hour continuing education lecture series by Russell Barkley, back in 2009, when he just started discussing sluggish cognitive tempo as a possible subset or separate entity from inattentive ADHD; he had found that while children with ADHD combined type and hyperactive type had a 80-90% positive response rate to stimulant medication, with 50% normalizing, in the subset of kids with inattentive ADHD and in the hypothesized sluggish co genitive tempo, the response rate to stimulant medication was far lower, in the 60% or less range. This difference in response to medication in the inattentive versus the combined and hyperactive types of ADHD was one of the more salient research findings suggesting inattentive ADHD has a different neurological pattern.

[SharonF]

keepthefaith--

You asked why I don't like the "fogginess" definition for SCT and what word I'd use instead. Good question. "Fogginess" seems to imply that the person just sits in a daze, not thinking much of anything. While that can happen in people with SCT, foggy thinking is not the cause of their SCT. Instead, it's the result of their SCT.

That cause vs. effect is important. If a teacher thinks a kid is sitting in a fog and just needs to try harder, that can be the exact OPPOSITE of the real solution. Trying harder often creates more mental fog, not less.

I believe a person with SCT often works HARDER at thinking. But because of the way their brain is wired, their thinking is not always quick or efficient.

Although they work VERY HARD to think things through, some thoughts go AWOL. Those thoughts evaporate without connecting smoothly to other thoughts.

Sometimes, it's because they have many thoughts racing through their head at the same time. That's not fogginess. That's information (cognitive processing) overload.

Sometimes, they have trouble maintaining a clear, consistent flow of thinking. It's like they are concentrating hard, thinking through the steps--when a part of their brain suddenly yells "SQUIRREL!" Again, it's not fogginess. It's trouble with consistent clarity of focus while thinking. Their brains are more distractible than the brains of neurotypicals.

If ANYONE tries to think too hard for too long, they hit overload. "Brain dead," we call it. I think ADHD-inattentives and Sluggish Cognitive Tempo types hit that level of "brain dead" more frequently than neurotypicals. Often, they hit it several times a day. Or several times per hour.

Rather than saying they have foggy thinking, I'd say that the person hits "information overload" quickly. After they hit overload, the person may appear spacey or in a fog. But fogginess (or lack of full understanding of the material presented) would be the result of the way their brain processes information, not the cause of it. In other words, they are not slow learners because they are in a cognitive fog. Instead, they hit information overload more quickly than other students, causing their thinking process to become slower and less effective, which makes them appear to be in a fog. So if they "try harder" when they're already at overload, their thinking will be even less clear and less effective.

No, I've not found any doctors who even mentioned SCT. It was a bit of a challenge to get dd diagnosed with ADHD-inattentive. She meets few of the DSM criteria. The same doctor (a pediatric neurologist) also evaluated our son for ADHD and decided he did not have it. Ds met even fewer of the DSM criteria. Both were in middle school at the time. Looking back, I'm very certain our son has SCT. Especially when I took the time to understand his very low "Freedom from Distractibility" score on the old WISC-III. No one from the school took the time to explain or explore that incredibly low score. Years later, when he was struggling in college, he told me he thought he has ADHD. But he did not want to go to a doctor about it. And I agreed that he probably would not meet the medical criteria for an ADHD diagnosis, given what's in the DSM.

You mentioned the "R" word. When our son was in 2nd grade, he was tested for the school district's gifted program. His teacher was *certain* ds was gifted and his elementary school had a well-established Gifted & Talented program. Well, his IQ score came back borderline mentally retarded. So the school asked us to have him tested privately. The private child psych said he tried but could not administer the IQ test because our little 7-year old boy was so wracked with anxiety. The doc declared our son to have average intelligence and the school did not put him in a gifted class. I really didn't care whether he was gifted or not. The 3rd grade teacher kept giving him gifted level material and he often did great. But it was strange that he sometimes struggled with the regular-level material. This pattern of struggling with the easy stuff, thriving with the hard stuff continued throughout college. And is probably why he dropped out of college after two years. His inconsistent performance in traditional learning environments was frustrating and exhausting for him.

Like your dd, our son was also gifted in music. In fact, he learned to read music without being taught. I studied piano for 14 years, so I know a little about music. But ds' ability to sight-read the most complicated rhythms always blew me (and his private music teachers) away. He said reading music was so much easier than reading words. He likes to read, especially books with very deep meanings. But his innate ability to read notes on a musical staff, evoking the right emotion and dynamics, and instantly feeling the most complicated rhythms always took me by surprise.

You said your brother was diagnosed with "Minimal Brain Dysfunction." You know what that is, right? It's the old name for ADD/ADHD. Decades ago, it was a broad label applied to kids who were struggling a bit in school, but there was no clear reason or name for their struggles. Good for your mom for not letting a label define him or his potential!

[keepthefaith]

Thanks Sharon - I can't even bring myself to say the R word! I find it a horrid and derogatory word. Regarding my brother. I knew about his MBD diagnosis but I didn't know it was the term once used for what is now ADHD! I was floored when I read that.

The matter beckoned to dig a bit re family history and I asked my Mom all sorts of questions about our relatives back in Ireland. A couple are spectrum/Aspergers; some are just *different*. Further, my 5 1/2 year old triplet niece is non-verbal autistic but her 2 sisters are "typical" kids. My sister said to me once "don't say normal - use the word typical".

I said to DD yesterday "you're a normal kid" and DD said "define 'normal' Mom!"! Out of the mouths of kids! I said to her: "you know something, you are very intelligent to ask "define normal"!. I don't know of 1 "normal" person. It's true - everyone has quirks of their own and I found her reply insightful.

Sharon, I could read your views on these topics ALL DAY. Very insightful. Also, I am not sure if you read the NY Times Article which Dwolen referenced and which I linked. The article mentions 130 odd pages of SCT research. I thought how can I get a copy of this and it dawned on me to email the research psychologist who did DD's private testing (NYU Child Study Find). I sent her the NY Times article/link and asked her if she could get me a copy of the January 2014 Abnormal Child Psychology so I can read the 130 odd pages mentioned in NY Times Article re SCT. I can't locate the information on internet - all I can find is abstracts and then you have to be a member to read in full. Doctor is having her intern send same to me - yeah! Doctor is also interested to read the 130 pages herself but she stated "I doubt it is 130 pages" but NY Times states it is.

If anyone would like a copy, please email me here and I will pass it along (with her blessing).

I have so much more to say but I didn't sleep last night. Thanks so much for sharing your perspective re Fogginess - I too thought about it from the perspective of information overload. At the classification meeting they said "your daughter's locker is very well organized". The way they said it, I felt that they meant: "she's capable of being organized so........" but instead I said "it takes every ounce of mental energy she has to make it to school on time, with proper supplies for each class, to make each class on time, to ensure she is not called upon and/or felt embarrassed in 9 periods of 41 minutes each ........that I am not surprised her locker is organized - THAT IS HOW BADLY SHE WANTS TO SUCCEED". (Emphasis on caps - I felt strongly about rebutting what I thought was a "slap" at her lack of organization.

I felt proud after that quick comeback for me because those meeting are intimidating! Sharon, thanks also for sharing about your son and daughter - how are they both doing now - you mentioned your daughter is in college and doing well - how is your son? Did they survive middle/high school without too much emotional *damage*?

Finally, I have to post separately about a bullying comment, sigh!

Otherwise,thank you - I very much relate to your experiences.

Dwolen:
"I listened to a 12 hour continuing education lecture series by Russell Barkley, back in 2009, when he just started discussing sluggish cognitive tempo as a possible subset or separate entity from inattentive ADHD; he had found that while children with ADHD combined type and hyperactive type had a 80-90% positive response rate to stimulant medication, with 50% normalizing, in the subset of kids with inattentive ADHD and in the hypothesized sluggish co genitive tempo, the response rate to stimulant medication was far lower, in the 60% or less range. This difference in response to medication in the inattentive versus the combined and hyperactive types of ADHD was one of the more salient research findings suggesting inattentive ADHD".

Thanks for sharing that information. I have to admit,I do not 100% understand why they changed the DSM to ADHD for ADD inattentive and now there are 3 types, right? They are called A, B & C is that correct?

Finally, Empeg, thanks for clarifying your views on the research. I have to admit I have never read this and I have to also say I agree with you - it seems so (can't find the right word) it seems so "uneducated" to not screen for FASD when researching ADHD. I know that Barkley is highly regarded by many - I have tried to read some of his books. I prefer Mel Levine's "A Mind At A Time". He has a great example of our kids in the book which I use frequently:

(From an email to School Guidance): This passage hit a nerve and I spoke to DD to reassure her that she is not a disappointment (she had a hard time with Common Core homework for ELA and feels like she let herself/her teachers and us, parents, down). Further, I also showed her the current grades on the parent portal. My goal was to show her the areas where she is able to increase her grades (i.e. “hand in signed tests” but for which she *forgets* to do because of her poor working memory issues). She was tearful when she saw her current scores. She obviously thinks she is doing better than she is.

MEL LEVINE: “I have been struck by the despairing flocks of boys and girls out there trying to make a go of it but faltering badly and disappointing their teachers, their parents, their friends/family, and worst of all themselves. It has to be hard, very hard, to be a disappointment.” “Kids who can’t seem to operate their minds to meet expectations feel terrible about themselves” – that is a tough way for a child to *grow up*.

[SharonF]

keepthefaith--

Funny that you say you could read my views on these topics all day. Because my posts are so long, you need an entire day to read them!!

Your dd is wise. "Normal is only a setting on the clothes dryer"--is what many experts like to say. But our education system is not set up to deal well with kids whose home lives, opportunities for enrichment, thinking style, learning style or social abilities stray too far from what is considered "normal."

I read the NYTimes article but don't have any additional insights. The public and some in the medical community are still debating the existence and causes of ADHD. Meanwhile, the DSM-V got rid of the term Aspergers and grouped it with High Functioning Autism. The current pendulum is swinging toward fewer subtypes and variations of diagnoses, rather than more. So I don't see SCT becoming "official" any time soon, 130 studies or not.

Even if SCT becomes official, I expect it would quickly fall into the vague, gray area of experts saying they're "not really sure what it is." The DSM relies heavily on observable behaviors. SCT isn't really observable, other than phrases like " "daydreaming, staring, mental fogginess and confusion, slow movement, lethargy, apathy, and sleepiness." That could be ADHD-in, or as others have said, FASD. It could even thyroid problems or absence seizures.

As you know, there are already diagnostic criteria for Nonverbal Learning Disability and (Central) Auditory Processing Disorder. But neither is in the DSM. And most teachers don't have a clue what they are. There is no IEP category for either of them. And therefore, no agreed upon 504 or IEP interventions.

So even if SCT were to get "status" as a real type of ADHD or a real type of information processing disorder, I would expect the educational community to ignore it or treat it the way they treat NLD, CAPD and the like. If there's no quick fix (medication) or no easy placement (School for the Blind), many teachers don't have the training or the tools to provide appropriate instruction.

Interesting about your dd's organization of her stuff. Many teachers assume all ADHDers are packrats or disorganized. But some people with ADHD, especially bits and pieces kids, actually are very good at organizing their stuff and their schedule, making lists, meeting deadlines, etc. My dd is definitely that way. It is a coping strategy that allows them to be successful. Yes, it does take effort. But for your dd, experience has shown that the effort of being organized is worth it.

You asked about my son. He is now 24 and seems very happy. Last fall, he moved two time zones away to live in Denver, CO. Since he was a little kid, he had always wanted to live in the Rocky Mountains. He works for a national retail company and asked for a transfer to Denver. He moved there sight unseen and knowing no one there. He loves it! It has been really good for him.

He was a solid student until middle school, when the bottom fell out. Looking back, there were warning signs like him being a very late talker and his weird IQ score in 2nd grade. But nothing really seemed out of the ordinary until he hit an academic brick wall in 6th grade. The school refused to give him an IEP. One teacher wagged her bony finger at me and said, "I know LD. Your son is not LD. He is just lazy and you are enabling him."

A private neuropsychologist was also no help. After testing my son, he said my son's brain was not functioning properly and that my son would never graduate from high school. Thanks, doc! But that's because my son's psycho-educational eval scores were so bizarre. Unexpectedly low IQ. Very high achievement. Very inconsistent patterns. We gradually peeled back layer after layer of the onion, but it took several years.

And thanks to advice from a school psych on a message board like this one, I had ds take a nonverbal IQ test. The UNIT uses no language, even in the instructions. His IQ went from very low to quite high. Proof that his brain DOES process information quickly and accurately, but if he has to use language (heard, spoken, written or read) to process information, his brain has a much harder time.

High school had its glitches but he took college-prep courses, got resource help as needed from some great and not-great teachers, and excelled in music and soccer. Then college was pretty much a mess. He didn't seek on-campus help for his academic challenges. He kept failing classes and changing majors. He distanced himself from his family and our values. He started partying to escape from the stress and it became his lifestyle. And things got worse.

But when he hit bottom two years ago, he got drug and anger management counseling (advised by his defense lawyer) and really turned his life around.

I share that as encouragement. Success comes in different forms. At different times. It's often one step forward, three steps back. Or treading water.

dd's cognitive profile is even more complicated than our son's. But despite her CAPD, her core language processing skills are stronger than his. And she is more likely to request help for her difficulties. I think her core language abilities and her willingness to seek assistance when needed are two key reasons why she did better in high school, graduated from college and is now applying to grad schools. Again, success comes in different forms. Her success is not a better type of success, just different than her brother's.

[mamak]

I'm glad this topic is being discussed again. My son has an adhd inatentive DX along with APD & dyslexia. His first report states he has SCT as well. He is way smart and a fast learner when in the right envirement and appropriate programs and services are provided. He responded poorly to the first ADHD medication perscribed and took off like a rocket with the second one. So keepthefaith please be sure the school is not dummying down your child's education just because "they" think your child is a slow learner. I fought hard for son to receive a high quality education with high expectations. He had the smarts and tenacity to not roll over and be disabled in the public school definition of.

Sharon is the perfect example of mom who can assess and get on with a individualized plan using her understanding and child's strengths. Her description of SCT in my opinion is pretty good and I could read her stuff all day too. That opinion would be coming from someone with a similar profile as my son but never formally DXed for anything but the ADHD. For me I can be distracted by a squirrel or a butterfly, I can also get an overworked brain from just reading or doing thinking tasks but in addition to that I have also have felt what some may not understand but I get which is the brain fog. When I get that way not much is going in and not much is going out or if I'm in the least bit motivated when I have this I might resort to tasks that are repetitive and require little to no thinking. I seem to get this more often without ADHD medication and especially after being in noisy places. I have also had it so bad I can describe it as having a migrain without the pain where you just don't want to do anything but relax in a quiet dark place which is also what my son does after a tiring day of school.

[keepthefaith]

Hi Sharon, thanks for your reply! Wow, I was transported. It's such a relief to hear that your son has turned his life around. I lived some partying days with my husband - for the first half of our lives together we had a really great time growing up with each other. We went to many concerts, we "partied" but we also held down our day jobs. I was always the responsible rebel lol.

During that era of crazy concerts, so many of our friends lost their way and never made it back to clean living. I worry a lot about future drug use. (Though I made a promise to stop thinking too much about the future!). It's difficult though because right now I am seeing so many kids hurting. These are the children of my friends who are all between 16 and 25- even 30. And the drugs are much harder today than the days of my youth. Also, when I read the "studies" about kids with ADHD who, if "not properly treated" end up self-medicating - there is a whole generation of kids out there self-medicating, ADHD/LD and not. My Goddaughter shared a bit of her life at college because I asked her to share and I asked her specifically "do kids really snort Klonopins" (a close friend's 16 year old has been doing this for a year now and I just "don't get it" - why not eat the Klonopin?). It's a very different life for kids today than it was for my generation. Huge kudo's to your son for kicking the habits and moving onward and upward! I also think it is great that he had the courage and maturity to be on his own in a place where no family lived. That would have been something I would have done myself but I fell in love with my husband at 17 so I stayed with him lol.

I would love to visit the Rocky Mountains. Thanks so much for sharing that story - I was transfixed. Also,I gasped when I read what the doctor said- oh boy. I hope if I have learned anything from DD's diagnosis' it's to never judge anyone EVER again. I'm pretty good with that but I as I have said before, I once believed that ADHD was some made up disorder too! It is eye opening to now be on this side on the fence. Substitute ADHD with any LD - it's not an easy job raising a child with an LD or a drug habit! Parenting as a whole can be very frustrating some days but the rewards of parenting are so great, aren't they? I am very, very close to my Mom - I couldn't imagine not being close to my own child(ren) (I always wanted 4 kids but as my Dad said "God gives you what you can handle" - boy, he was dead right about that.). Also, the teacher saying you enabled him - what gives anyone the "right" to make blanket statements like that. Duly noted (for me that means take note and don't repeat error!).

As for family in general,I have 4 sisters as well so I do know families are like fragile china. I love to learn about the experiences you and others have had - thanks for sharing the encouragement .

Regarding your DD - very happy to read that she is doing well now. I have to confess. Before I got to this board,I had no clue what a language processing disorder was. You all have a way of explaining things that make "me" feel somewhat intelligent! On the other board, I would never ask "what is a language processing disorder" because I don't think anyone would have even replied. It's different here on MM because I know I can ask a question and not be made to "feel stupid" (for lack of articulation at this moment).

At the meeting last week as they went over proposed accommodations, it was great to have my list ready to go just by the sheer facts I have read on this board! Thanks for that! Help with language processing is on the list for the next meeting in preparation for grade 7.

BTW, since I have your ear, we are going to privately help DD with language processing via Speech Language Therapy. School is handling OT therapy and after 4 years of pull out RTI we don't want to see DD being pulled out from her core subjects any longer than absolutely necessary. Therefore, I asked insurance for a list of providers and it arrived today. Some are "speech therapists" and others have other qualifications,i.e. SLP - can you give us an idea of what we should be looking for? The professional would need to help DD (and to also help us to help DD) with critical thinking, inferencing, comprehension, etc. - any advice appreciated. I looked at the list and I "need help with this". I also plan to ask her Orton tutor what to look for in this professional - thanks!

Success does comes in different forms - you're right. At the meeting I hand wrote a note to my husband "this is not going well" - I was so taken aback when they told us she was classified OHI (and grateful to have finally made it to the point where someone other than me/husband sees issues).

Ok, I can talk forever too! I am very guilty of LONG emails so I will thank you for sharing - I am sorry for the disappointing doctor and teacher-how are kids to grow into contributing members of society with such close mindedness but my advice of late(due to my best friend's brain cancer) is "to each his own" and to absolutely 100% take each day as a gift because we never really know what the next day holds for us. It is always good to walk away from something a bit more informed than when you arrived, right?

Thanks!
Marie

[keepthefaith]

Hi Mamak,I just saw your post - will read now. I was halfway done with my reply and then got sidetracked - be back!

[keepthefaith]

Apr 14, 2014 18:00:52 GMT -5 mamak said:

I'm glad this topic is being discussed again. My son has an adhd inatentive DX along with APD & dyslexia. His first report states he has SCT as well. He is way smart and a fast learner when in the right envirement and appropriate programs and services are provided. He responded poorly to the first ADHD medication perscribed and took off like a rocket with the second one. So keepthefaith please be sure the school is not dummying down your child's education just because "they" think your child is a slow learner. I fought hard for son to receive a high quality education with high expectations. He had the smarts and tenacity to not roll over and be disabled in the public school definition of.

Sharon is the perfect example of mom who can assess and get on with a individualized plan using her understanding and child's strengths. Her description of SCT in my opinion is pretty good and I could read her stuff all day too. That opinion would be coming from someone with a similar profile as my son but never formally DXed for anything but the ADHD. For me I can be distracted by a squirrel or a butterfly, I can also get an overworked brain from just reading or doing thinking tasks but in addition to that I have also have felt what some may not understand but I get which is the brain fog. When I get that way not much is going in and not much is going out or if I'm in the least bit motivated when I have this I might resort to tasks that are repetitive and require little to no thinking. I seem to get this more often without ADHD medication and especially after being in noisy places. I have also had it so bad I can describe it as having a migrain without the pain where you just don't want to do anything but relax in a quiet dark place which is also what my son does after a tiring day of school.

Hi Mamak,thanks for sharing too! The learning curve for me has been ADD Inattentive - our DD doesn't "gel" with the typical ADHD descriptions - she had some of the hallmarks but not nearly enough to deal with the "I" part of her her ADHD. For all of my bravado right now - that is due to finally getting DD classified - I am petrified about the IEP process for Grade 7 and will I make sure to settle for the "bigger items" and not fret the smaller stuff.  It's taken me 4 years to attend a meeting that I didn't break down and cry at!  I read from Emotions to Advocacy and I still cried.  I am worried about the Placement Vs. Program aspect of the IEP.  They almost seemed to eager to offer the resource room to DD but a childhood friend said she may actually benefit from it.  Also, "MY" biggest "wish" is help with reading and comprehension but the school's main focus is math.  And yes, we do feel we have a slow learner now but I 'm trying hard to keep that quell of anger down while I do my first ever IEP - I really want this to work well.  I have an acquaintance who gets her child's  IEP and then just files it - I often wonder if I overthink everything!  

I love this statement:

" I fought hard for son to receive a high quality education with high expectations. He had the smarts and tenacity to not roll over and be disabled in the public school definition of. "

Sounds like you taught your son advocacy skills.  I too am trying to teach DD how to advocate for herself (as I can no longer be at the school for every single 'infraction' or 'injustice' in her eyes as it was in elementary.  Good for your son.  Thanks for the advice on dumbing down - ever since I heard that term it has stuck with me.   That was one of the reasons I didn't want to 100% refuse the Assessments - I want DD to learn test taking, etc.  But this year was "no way" becasue the score didn't count for the student and it's unfair to grade the teachers on a program they haven't had time to digest and develop.

For me, I love being in a brain fog - some days my brain doesn't stop it hurts.  I used to get migraines so I get your analogy!  Without the pain!

Thanks for sharing.  I am sure I will be also asking 100 IEP questions soon!


Marie

[SharonF]

keepthefaith--

I think bringing an SLP into the mix is a good idea. Private providers can help in ways that school-based staff cannot.

My advice: interview several SLPs. Look for specialists who have plenty of experience with a WIDE range of learners and who also have a LOT of tools in their tool belt.

Be aware that some SLPs focus more on speech articulation. Some focus more on language processing. I think you can figure out which type your dd needs most!

Ask about the types of "tools" they use. For example, I would be wary of someone who always uses Orton. Or always uses Lindamood Bell. Especially with a "bits and pieces" kid, you need a specialist who can quickly adapt and blend various types of instruction to meet your dd's needs. One size doesn't fit all in school. And one program doesn't fit all in private practice, either.

I would also caution against computer programs that "retrain" the brain. A private SLP recommended something called Fast ForWord for our son and the results were not good. FFW works wonders for many kids. But for our son, the intensity of having his brain "rewired" while sitting at the computer was more than he could handle emotionally. One evening while trying to do FFW, he had a complete emotional breakdown.

My point: what sounds good and may have solid scientific research to back it up may not be right for your child. Shiny new products and quick fixes definitely are to be approached with caution. Have the courage to say "STOP" when something is not working--and ask the specialist for some different options. If they have experience and a broad tool belt, that shouldn't be a problem.

We used private providers for many years. SLPs, a vision therapy specialist, learning specialists/tutors who specialize in kids with LDs and 2E, and a counselor who specialized in young people. For two summers in middle school, my dd went through intensive therapy for reading comprehension and abstract math. The instruction used multi-sensory concepts from Lindamood Bell, but it was not LMB.

At one point, I added up that my husband and I had paid more than $40,000 out-of-pocket for private assistance for our kids. And that was more than ten years ago. My husband had to take a second job. By the time they went to college, we had no money saved for tuition. But if I had to do it all again, I would DEFINITELY hire private professionals to fill the void that the school could not and I, as a parent, could not. Even a great IEP in a great school will still not provide the 1:1 assistance that your child gets from a weekly, one-hour session with a private tutor who specializes in kids who learn differently. And teenagers often work better/harder for an outsider. Parents are often too close to the situation to be good tutors.

Throughout middle and high school, both of our kids went to a private tutor. Not for some recognized program like Orton or LMB. But for weekly help in their regular subjects: math, science, English, history, writing papers, WHATEVER! She even helped them prep for the SAT and ACT. And because she had been a SpEd teacher before choosing to become a tutor, she helped me prepare for IEP meetings and knew what data was relevant regarding IEP goals and my kids' progress.

I know not every family can take on that kind of expense. Or work a second job. But we were able to make those sacrifices and the cost was definitely worth it!

[healthy11]

I'd like to echo what SharonF said in regards to the benefits of finding private tutors/therapists to work with your child, in an effort to provide what the schools can't. My son, being "2e - twice exceptional," was unlike most of the students that the schools dealt with. Initially, they refused to evaluate him, since he was meeting minimal grade level expectations, but I could see the huge disparities in what he was able to do academically. (He learned quickly in "hands on situations," but reading was difficult and writing was torture.) They blamed all his problems on ADHD.

When my son started out in elementary school, there was a big "whole language" push, in a misguided effort to encourage creativity of expression, without regard for how anything was spelled/written. My son's printing was cryptic, and at one point, we had him evaluated for CAPD, because we weren't sure he was even processing all the sounds he'd hear...The CAPD expert didn't think he had CAPD, but felt he needed traditional phonics exposure, so we hired an older teacher to work with him during 1st/2nd grade. While he improved, it was obvious he needed even more explicit instruction.

I took my son to Orton-Gillingham tutoring from 3rd - 5th grade, and he made additional strides, especially in reading, but his spelling/writing were still barely legible. He also started taking ADHD medication, but much to the school's surprise (not mine) it didn't "solve all his problems." Even the O-G tutor (who was an experienced trainer of other O-G instructors) described my son as a "conundrum" because he'd seem to grasp concepts one week, and forget them the next. (His working memory is relatively weak.) I "read between the lines" and realized the O-G tutor was saying she didn't know what else to try, plus my son was sick of tutoring and wanted to have more free time, so we stopped going. I resigned myself that my son would probably never be a "great writer," but at least his reading had improved, even though he still didn't like to sit quietly or read for pleasure.

By the time my son was in 7th grade, he was clearly struggling again under the increased work load of middle school...in retrospect, his Executive Function weaknesses were becoming more obvious. The public school FINALLY agreed to test him for LDs, but I knew the process of getting an IEP could take awhile, so in tandem, I found a tutor to work with him on organization/homework issues (ie, breaking down projects into smaller segments, helping him to put his ideas onto paper, etc....) I could've helped him with those things if he'd let me, but my son and I are a bit like "oil and water," and he takes instruction and feedback better from strangers than from me.

In 8th grade, he stopped seeing the private homework tutor, because the school finally approved his IEP and he was supposed to get a period a day of reading/writing remediation. It ended up being little more than a supervised group where a case manager walked around a room while 15 kids sat at computers, supposedly "working at their own individual levels." It wasn't very useful. The only good things were that my son finally realized he wasn't the only bright kid who had learning differences, and we had "formal paperwork" to prove it, so he could get accommodations later on, for things like ACT/SAT exams.

To make a long story short, since the public school "group remediation" in 8th grade wasn't very helpful, we opted to have him attend a smaller, parochial high school where he just got accommodations, like extended time for taking written tests, and the ability to take them in a quiet room, where there were fewer distractions. He also had a "supervised study hall" where the first part of the class period was spent teaching things like note-taking, and the second half was when kids could get help with homework, etc. By the end of Freshman year, he seemed to recognize that the reading/writing workload would continue to increase with every passing grade, and he was "open" to the idea of seeing a tutor again, provided the person could do it in an interesting, not "rote" way. As luck would have it, I heard of a 20-something guy who was finishing his schooling to become a special ed teacher, and he had previous Lindamood Bell instruction. I knew my teen son would relate better to a male than his previous "matronly" tutors, and so I asked the guy if he would meet with my son over the summer to read something "for fun" and help him improve his comprehension and summary skills, in essence writing "book reports." They chose "Zen and the Art of Motorcycle Maintenance." My son (to this day, even) has a strong interest in mechanical things like cars and motorcycles, and I think working with that male tutor was the first time he realized learning, even reading and writing, didn't have to mean "tedious and boring."

I've probably been too long-winded with the above, but the bottom line is as SharonF said, with kids who have "bits of this and pieces of that," no single approach or tutor can "do it all," but if you can afford it, the combined effort is worth it!

[keepthefaith]

Thanks Sharon & Healthy - you are both tremendously supportive and your reply is so timely for me as I am calling the providers today & you have both given me a clear understanding of what to look for - I am very, very grateful!!!!!

I have to be brief today - I just wanted to let you both know I have read, copied your replies to my working binder and now i'm off to dial the phone! Also Healthy, I will come back to the resource room and non-supervision - that is a big concern for me too. All of this sage advice is worth thousands of dollars in savings!!!!

We can't "afford" not to do this - thankfully our medical covers SLT if "medically necessary" and we've now made that case!
Thanks thanks!

[SharonF]

I'm cleaning out old emails and came across one from 2006. Our then 14-year old daughter was failing algebra and we were wondering whether we should move her to a different high school or try a different approach. I talked with our church's youth pastor, a wise old guy with a young heart and a pretty strong touch of ADHD himself.

In an email, he described my dd (and referenced our son, her older brother) this way:

>> It's not breaking a confidence to share what I've been seeing which is a
sort of delayed "Aha!"

(Your daughter) goes along and you think she's totally zoned out on what's being said,
and then a phrase or fact will trip a recollection maybe weeks old and she'll say,
"So that's what you meant about...!" and it will turn out that she had stored
the data and then another clue made it all fit together. Once it clicks, she shows
she has remembered a lot.

I'm starting to be aware of two different "zone outs" The first is the "I'm
boooored" zone, and her body position will be as flat as space allows while
her gaze goes almost everywhere. The other zone is a sort of "I'm taking it
in, let me be." She'll be looking at you, and sitting straight (or what
passes for straight) but she'll be physically distant and real quiet often
not even showing any facial reaction.

(Your son) does the same thing, but for shorter periods, and he'll make connections
faster and volunteer questions and thoughts. When she's in the zone, you have to ask
her questions to get her sharing, usually very broad and open ended. If I press for
an answer,she'll retreat deeper, so I generally keep it light and let it go if she's
not ready. When she gives me a short answer, I also try to gently ask her to say more.

My other rule with both is to be very affirming with any answer they give. It's never
"No, that's wrong" but more "OK, you're on the trail, and that's good thinking." <<


I think that describes SCT, at least in my daughter. And I think the youth pastor was incredibly insightful about her two different types of zone outs. One zone is fully disconnected. But in the other zone, she may LOOK passive or disconnected, but her mind is far more active and engaged that observers might realize.

That's why I don't like the "foggy" description of SCT, at least for her. And this youth pastor described it in 2006 better than I ever could!!