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.

—————————————-
*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) 
STRICT No Spam Policy

——————————-
*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

TBI Related Articles around the ‘net

About Madelyn Griffith-Haynie, MCC, SCAC
Award-winning ADD Coach Training Field founder; ADD Coaching field co-founder; [life] Coaching pioneer -- Neurodiversity Advocate, Coach, Mentor & Poster Girl -- Multi-Certified -- 25 years working with Executive Functioning struggles in hundreds of people from all walks of life. I developed and delivered the world's first ADD-specific coach training curriculum: multi-year, brain-based, and ICF Certification tracked. In addition to my expertise in ADD/EF Systems Development Coaching, I am known for training and mentoring globally well-informed ADD Coach LEADERS with the vision to innovate, many of the most visible, knowledgeable and successful ADD Coaches in the field today (several of whom now deliver highly visible ADD coach trainings themselves). For almost a decade, I personally sponsored and facilitated seven monthly, virtual and global, no-charge support and information groups The ADD Hours™ - including The ADD Expert Speakers Series, hosting well-known ADD Professionals who were generous with their information and expertise, joining me in my belief that "It takes a village to educate a world." I am committed to being a thorn in the side of ADD-ignorance in service of changing the way neurodiversity is thought about and treated - seeing "a world that works for everyone" in my lifetime. Get in touch when you're ready to have a life that works BECAUSE of who you are, building on strengths to step off that frustrating treadmill "when 'wanting to' just doesn't get it DONE!"

26 Responses to Lessons from the TBI Community

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  9. I enjoy looking through an article that ccan make men and women think.

    Also, thawnk you for allowing me to comment!

    Like

    • Thank YOU for your comment. I hope you’ll return. xx, mgh

      Like

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  12. annie ellerbusch says:

    was catching up on comments and just saw your reply on 6/16 – thanks, that means a lot to me!

    Like

  13. Hello

    I am new to blogging. As a matter of fact I joined wordpress simply to say Thank You to you.

    So, Thank You!

    You may be “preaching to the choir” as you say, but, this affirmation helps those of us living with the people that have EDD (Empathy Deficiency Disorder). A far more debilitating disorder than ADD in my opinion. 😉

    Information and education of differences in our species seems to be a long process. We all have differences of one kind or another, however, we only see the rest of the human race from within our own viewpoint. Maybe we can look to history when feeling low or frustrated with those around us not understanding how we think and work. It has taken generations of humans to start to accept the obvious physical differences in each other, so, with the help of pioneers like yourself, someday the human race will understand and accept the invisible differences.

    I look forward to learning more and sharing that with open people around me.

    Like

    • I am SO touched and honored, both by your comment AND the fact that you “joined wordpress simply to say Thank You” to me. WELCOME! Keep in touch – and if you see something here YOU are blogging about, leave us a link in the comments section.
      xx,
      mgh

      Like

  14. jeg700 says:

    I love your site and what you do. ‘Nuff said.

    Like

    • You are SUCH a doll! Ditto – right back atcha
      xx,
      mgh

      Like

  15. annie ellerbusch says:

    You are preaching to the choir – but we are leaning the words to songs we will be singing to others, and so on . . .

    Like

    • Annie – have I told you lately how much I adore you, your attitude, your spunk, your heart? Consider yourself told!!

      Like

      • annie ellerbusch says:

        I consider myself told and well loved too! I keep re-reading your comment – it makes me feel so good!! Thank you.

        Like

        • And thank YOU for continuing to step into WHO you are, Miss Adorable – I know your life hasn’t been easy – but you have made the lives of others easier anyway. GOOD job!
          xx,
          mgh

          Like

  16. Kathy says:

    I am sooo thankful that Edie found you and is re-posting your blog. I did sign up for the notifications.

    I have struggled for years – ever since grade-school and all through H.S. with learning. Yes I can learn anything, but I have to put an unbelievable greater effort into my studies than anyone I know. It wasn’t until twenty years ago that I received some insight as to what was happening. Unfortunately it was after a dx of anxiety, depression and ADD. Needless to say at forty-nine I fulfilled my dream of higher education and as usual some of my studies were extremely difficult.

    I personally found that colors had everything good to do with my learning process. By using colors I could group the same areas of study together, even if they were in different parts of the textbooks. There were so many other things that I did to help myself learn.

    I choose to persevere rather than give up. I struggle in the areas of learning, attention/concentration, short term memory (which greatly increased while in college) and multi-tasking when unfamiliar with what is expected of me.

    Edie and I are forever friends/sisters. Over the years we’ve made comparisions of the struggles we both face on a daily basis. I am so encouraged with your article because you are making a connection between ADD and TBI. I have many questions for you but feel uncomfortable discussing in an open forum due to my profession. Now isn’t that sad, but the biases are so strong.

    Thank you from the bottom of my heart for all your hard work and the voice you have given to those with ADD and TBI.

    Like

    • Welcome Kathy – it IS sad that any of us have to hide so much of who we are to keep the “mean kids” from picking on us. My choice to be “out” re: ADD has cost me much, personally & economically, so I can’t say I really advise that path. Society won’t change, of course, until more of us stand up to the bullies, but MEANWHILE what do we do?

      Many of us NEED the “approval” of others (otherwise known as getting hired and not getting fired! — and disclosure DOES impact both).

      We hope to foster understanding and acceptance, making it EASIER for everybody to work together and get what they want; THEY hear it as – “Get rid of the trouble-maker before s/he sues us” – or some other equally off-base rationalization that stands up in court );

      Others are connected by blood to disbelievers they don’t want to embarrass by their own public disclosure (hmmm – how come we’re nicer to them than they are to us?)
      — or are married to EMOTIONAL BULLIES, and it is simply not worth having to have “the argument” whenever anyone who sees a comment linking “ADD” (or any other “label” – otherwise known by sensible people as “diagnosis”) to the bully.
      (Narcissistic, anyone? still more than the one struggling can deal with, so they must pick their battles)

      Still others don’t want to make things hard for their KIDS (a t-totally valid consideration!)

      WHAT CAN WE DO?  Since we generally must work twice as hard for half as much, and struggle with staying on task, etc., we really don’t want to spend time trolling the i-net praying for answers we can use.

      Yet how can we ask targeted questions without putting the target on our t-shirts?

      Many (like BlueBrilliant, for example) create an online persona that identifies posts and thoughts (and/or questions) without taking the chance that his job or his reputation in what I call the “vanilla” community at large might be negatively affected.

      WHY DON’T MORE OF US DO THAT?sheesh – how much time do you have for me to answer THAT one?

      Basically, black and white thinking – our brains link to all of the reasons people might post without signing with a “real” id, and we go to the worst. Our brains are designed to keep us alive, remember, so that leaves us skewed to the dark side.

      I think this is becoming a blog post I need to write – so I’ll stop for now and simply say WELCOME! I might have an idea for an “anonymous” Q&A format that might work – stay tuned, I’ll post it if I work out the bugs.

      THANKS for your comment.
      xx,
      mgh

      Like

  17. Reblogged this on braininjuryselfrehabilitation and commented:
    This article emphasizing ADD, TBI, and any number of brain dysfunction that occur. Please take some time to review this if you deal with any chronic injuries or diseases as well. This is written by an expert in the area and holds an array of information. Please mark this site and refer others to help educate the world. Thank you in advance to all my readers. Please leave comments.

    Like

  18. With great appreciation that a professional is educating the world about ADD, TBI, and other brain dysfunction disorders. This is full of information and I will reblog this an any additional articles. Thanks again, Edie

    Like

    • THANKS Edie – and I appreciate the “expert” part – HOWEVER – we all really KNOW somewhere deep inside that the only real expert on what’s going on with us is OURSELVES.

      Sites like YOURS are the real “expert” sites for the TBI community. So thanks for finding my information worth reblogging, and for giving me YOUR expert stamp of “approval” that tells me that what I am doing does, in fact, “generalize” to a communities beyond ADD.

      I would like to suggest that you know more about TBI than I *ever* will — unless I end up having to learn about it the way you did – in the trenches!

      I can only help others learn to Sherlock, point them to logical places to BEGIN, suggest other paths to travel – what works for many, and what barely works at all – and explain WHY.

      Ultimately, however, it comes down to this: we all have to do our own “one rat studies” – and compile what we learn by sharing with each other. Those of us who are compelled to share do so because it helps US heal when we can smooth the path for another.

      It’s a joy to connect with a similar soul on a similar path. Pleased to meet’cha!
      xx,
      mgh

      Like

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