Lessons from the TBI Community

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ACO Conference Binder 2012 –
Blog expanded Speaker Content
Madelyn Griffith-Haynie – Part 3a

Intractable Ignorance:
forming an opinion without knowing very much about a subject
while refusing to investigate any information
that might change one’s mind;
closed mindedness;
cognitive inflexibility.

Feed Your Head

I will always stare in mouth-open amazement whenever I hear statements that might as well be saying, “I don’t believe that ADD is a legitimate disorder”  from intelligent and otherwise well-informed individuals.

• Part of the the lack of acceptance and understanding is certainly the fact that ADD/EFD is what we call an invisible disorder — unlike many physical disabilities, for example.

• Behaviors are visible, of course, but far too many people labor under the illusion that all “[mis]behavior”  is ALWAYS within the volitional control of the person exhibiting the behavior — despite a great deal of research and a great many books from credible sources pointing out the fallacy
  of that assumption.

The far greater problem, however, is ignorance – insufficient information.

Part of the reason I have been generous with my time, summarizing, relanguaging, and recombining content from a number of fields — hoping to pass along the benefit of decades of reading and experience — is that, despite 25 years of a great deal of evidence to the contrary, I still believe that sorry state of misinformation doesn’t have to be a permanent condition!

Since my greater goal is a world that works for everyone, I want to a expand my impact on a far more devastating disorder, one that I feel is the root of almost all of the problems of our planet: EDD – EMPATHY Deficiency Disorder. Perhaps if people could stop being so thoughtlessly cruel to ADDers, it might generalize.

We start where we can.

I’m fairly certain, however, that I’m “preaching to the choir”
where the readers of this blog are concerned.

My GOAL with this section of the Brain-Based Resources Series is three-fold:

• To arm you with information that might allow you to reason with the nay-sayers in your communities, hoping you will be able to open a few closed minds (whether they be family members, school officials, medical professionals, neighbors, colleagues, or anyone else who attempts to shame you or invalidate your experience with their unresearched, misinformed personal opinions);

• To connect the ADD/EFD and TBI support communities in ways that promote the sharing of information and “cognitive assistive technologies” that take advantage of the brain’s neuroplasticity to turn “can’t” into CAN;

• To supply a possible brain-based reason for intractable ignorance, so that you can step back from the urge to personalize, allowing you to present new information in a fashion that some of it, at least, might be heard.

Let’s think logically about this

Anyone who has had any reason to take a look at education in the last forty years surely must be aware of the meaning of the term “learning disorder” or “learning disability.”

If they’ve looked beyond the headlines, they may also be aware that the term does not refer to an intelligence-delimited inability to learn, but to a difference in the manner and speed in which the information must be presented for learning to take place.

There was a time, for example, that we knew nothing about the brain-based reading struggles faced by those with dyslexia.  That time is long past, however, and most educated people would be too intellectually embarrassed to opine that they “did not believe in” learning disabilities, even if they didn’t fully understand that those disabilities are differences, stemming from the way each particular brain is “wired.”

So we DO know that brain differences exist. The success of alternative curricula have proven them to be effective reaching and teaching ALL kinds of minds that might otherwise have found, not only school, but life itself incredibly frustrating and difficult.

The most successful of these endeavors look at learning through the lens of solid brain-based findings, what the All Kinds of Minds non-profit learning initiative refers to as a  neurodevelopmental framework (an approach that some of our “ADD/EFD nay-sayers” would probably find helpful with that cognitive inflexibility, by the way.)

*thanks Patrick!

Broken Brains

I doubt that anyone who reads or watches television is unaware of the behavioral and cognitive changes that accompany dementias, strokes, and brain-injuries due to accidents of one sort or another.

Most sensible individuals readily accept that those changes are a direct result of brain damage, leaving areas of the brain incapable of performing their role in the neural relay race, or doing so inefficiently or incompletely.

WHY IS IT SO DIFFICULT TO BELIEVE that that someone might be be born with parts of the brain that function inefficiently, or that brain development might not proceed in that so-called neurotypical fashion in ALL individuals, and that there might be similar behavioral and cognitive differences as a result?

According to the Brain Wellness and BioFeedback Center of Washington, D.C.

There is substantial overlap in the symptoms that are diagnostic for both MTBI* and ADD.

These commonly include some or all of the following: 

trouble with
• attention and concentration 
• short-term memory   • organizing/prioritizing
• impulsiveness   • multi-tasking,  and occasionally
• poor social skills   and   • mood swings.

These observations are supported by hard quantitative data from brain imaging studies with children and adults diagnosed with ADHD. Single photon emission computed tomography (SPECT) and positron emission tomography (PET) scan studies show decreased metabolism in many areas of the brain that are involved in various cognitive processes including attentional, inhibitory, and decision making behaviors.

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*MTBI – “Mild Traumatic Brain Injury,” a term that is falling into disfavor because there is nothing mild about it’s cognitive after-effects. Research has shown that even a “mild” case of TBI can result in long-lasting neurological issues that include slowing of cognitive processes, confusion, chronic headache, post-traumatic stress disorder and depression. ~mgh

Making More Connections

In this several-part article in the in the Brain-based Resources Series, we’ll take a look at some of the well-documented cognitive, mood, and behavioral changes that accompany brain differences that were not present from birth [traumatic brain injury, TBI and acquired brain injury, ABI] as we endeavor to embrace and understand what BI neuroscience has come up with that we can apply to our understanding of attentional and executive functioning disorders, transforming some of our underlying assumptions about our ADD/EFD clients and loved-ones.

Some advantages for TBI neuroscientists

The depth of information to be found in the TBI community (becoming more globally available only the last few years) is due, in part, to the reality that a great many of the neuroscientists who study Traumatic Brain Injury have a number of advantages that those working in the ADD/EFD community do not:

1. Historically, they have had a better idea of where to look for neuro-functional abnormalities because they usually had some information about the source of the injury (as well as external physical evidence, in many cases).
2. They, more and more frequently, communicate with family members who are eager to provide detailed examples of what the patient was like “before,” what has changed since, along with specifics about progress – all uncolored by personalization, denial or shame
3. It is a rare situation when the patient’s community is divided in their understanding of the cause of what went “wrong.”  The information-gathering phase proceeds more directly in the absence of the adversarial environment that frequently accompanies  the ADD/EFD diagnostic process, whenever the patient’s community includes “non-believers.”
4. Nobody sane expects the patient with obvious brain damage following a serous accident to “pull it together” without help and rehabilitation.  We don’t see the “not really trying” type of denial that is all too common in the ADD/EFD community.  As a result, their doctors are able to collect more accurate data from all concerned about what’s not working as expected. That generally leads to a more comprehensive and accurate idea of what rehabilitative interventions might work best to get things back on track.
5. Since it is unusual to hear that someone “doesn’t believe in” brain damage, the individuals with the problem are not shamed into pretending to be higher functioning than they are – at least in the beginning – so they are willing and able to provide useful feedback, in many cases.
6. In addition, assorted poorly-informed politicians, Scientologists and members of the popular press feel less inclined to jump into the “no such thing” fray. Various articles and books written from that particular point of view always increase stigmatization as they manufacture sound bites.  Those ill-considered soundbites misinform, not only the public at large, but a great many of the non-specialist doctors on whom the ADD/EFD community has no choice but to depend for diagnosis and treatment.

Unfortunately, this kind of misinformation also negatively affects the availability of research funding in the ADD/EFD community.

In contrast, as the public becomes more aware of the link between PTSD and TBI, coupled with the daunting suicide statistics of our returning veterans, new avenues of funding for programs and research open up monthly.

The number of posthumous donations to the TBI brain-banks also gave TBI neuroscientists a research advantage — especially valuable before the availability of functional brain scans (which provide a glimpse of what is happening inside that “black box” sitting on the shoulders of a living human being).

To Underscore My Last Point

From the unbelievably under-reported-upon all-expert International Consensus Statement (click to download) signed by a consortium of 75 international scientists deeply concerned about the periodic inaccurate portrayal of ADD/EFD in media reports.

We fear that inaccurate stories rendering ADHD as myth, fraud, or benign condition may cause thousands of sufferers not to seek treatment for their disorder. It also leaves the public with a general sense that this disorder is not valid or real or consists of a rather trivial affliction.

Occasional coverage of the disorder casts the story in the form of a sporting event with evenly matched competitors.

The views of a handful of non-expert doctors that ADHD does not exist are contrasted against mainstream scientific views that it does, as if both views had equal merit.

Such attempts at balance give the public the impression that there is substantial scientific disagreement over whether ADHD is a real medical condition.

In fact, there is no such disagreement  – at least no more so than there is over whether smoking causes cancer, for example, or whether a virus causes HIV/AIDS.

Which is Not to Say . . .

Individuals who find it difficult to drive their own brains in either community are FAR from having the understanding and support they deserve — from their professional caretakers, the people who claim to love them, or the random strangers on the street who believe they have the right to voice their opinions about what a fellow human being “should” be able to do “if they really wanted to.”

As you read the articles in the TBI portion of the Brain-based Resources Series, it is important to remember that this is not a contest – who has it worse – but an attempt to compare and contrast two different communities struggling with the same brain-based difficulties.

ADD/EFD and TBI sufferers report experiencing the same lack of understanding of the functional and/or behavioral implications of their injuries and brain-based challenges among those in their communities at large.

The fact that most individuals in the TBI community can date the beginning of their current disabilities in no way changes the reality that they must learn anew “how to drive the very brain they were born with™” – which is exactly the challenge for ADDers seeking coaching, regardless of their age at the time of diagnosis.

It is also important to note that, given what we currently understand about the mechanics of neuroplasticity, in some cases prior cognitive and functional abilities makes it easier to “retrain the brain,” and in others it makes it more difficult. (I’ll explain why in an upcoming article)

Symptoms of Brain Injury

Neuropsychological  impairments caused by brain injury may be characterized in terms of three functional systems

(1) intellect, which is the information-handling aspect of behavior;
(2) emotionality, which concerns feelings and motivations;  and
(3) control, which has to do with how behavior is expressed.
Source: Neuropsychological Assessment, 3nd  Ed., 1995,  by Muriel D. Lezak

In the next part of this article, we will look at a number of specifics in each of the broader categories above – making the link between brain and behavior ever more incontrovertible – so stay tuned.

COMING ATTRACTIONS

I will be posting all of my speakers content from the 2012 ACO Conference – edited and augmented to take advantage of the lack of space constraints and the possibility of adding additional information and illustrations, as well as links for context.

I also plan to add more than a few resources that I did NOT have time to share at the conference, content that those of you who stick with the series will LOVE me for sharing
Get it NOW, while its free for the taking.

Leave me feedback (comments, likes or gold stars) and  help me spread the word (or I might just change my mind ::grin::)

As always, if you want notification of new articles in the Brain-based Resources Series – or any new posts on this blog – give your name and email to the nice form on the top of the skinny column to the right.   (You only have to do this once, so if you’ve already asked for notification about a prior series, you’re covered for this one too) 
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*Broken Brain with Pipe courtesy of Patrick J. Lynch, medical illustrator
Creative Commons on Wikipedia; graphics not otherwise attributed, are courtesy of
Wikipedia, under the Creative Commons License

Related Articles on ADDandSoMuchMore.com
Links are dark grey — they turn red on mouseover ONLY once
the article has been completed, edited and web published

• Making the Connection: Brain-based Coaching Intro
• Brain-Based Overview (part 2 in the series)
• Lessons from the TBI Community
• The ADD/HD All-Expert Consensus Statement
  
• Gathering the Tribe: TBI-2  (a few TBI Specifics — Overlaps with ADD)
• Throwing down the Gauntlet: challenge to professionals
• Brain-Part Imbalances
• Brain-Based References: Books on Mind and Brain
• Brain-Based References: Attentional Spectrum Books
• Booklist from the original ADD Coach Training
• Brain-Based References: Blogs & Websites

• What ARE Executive Functions?
• ABOUT Alphabet Disorders
• Got Memory (Part I)
• Brain-based Coaching Paradigms
• ADD Overview-101 (first in a series)
• Brand New Brain-based resource

• Other posts in the Walking A Mile in Another’s Shoes Series of Articles

TBI Related Articles around the ‘net

• Could This Be The Reason Traumatic Brain Injury Is Misdiagnosed and Untreated? (braininjuryselfrehabilitation.com)
• Signs and Symptoms of  TBI (with chart of existing categories)
• About Brain Injury (BCFTBI.org – Betty Clooney Foundation)
• Understanding the Trauma in Traumatic Brain Injury (brokenbrilliant.wordpress.com)
• Mild Traumatic Brain Injury is not considered so “mild” any more… (brokenbrilliant.wordpress.com)
• PTSD from TBI – Like being trapped in an abusive household (entire site excellent)
• TBI and why it sucks…. (fightingptsd.wordpress.com)
• TBI types (headinjury.com)
• Mild traumatic brain injury may contribute to brain network dysfunction (sciencedaily.com)
• Traumatic brain injuries challege marriages (wjla.com)
• Scientists Looked Inside The Brains Of Troops Killed By Bombs And Made This Shocking Discovery (businessinsider.com)
• TBI List of Links (braininjuryselfrehabilitation.com)