Tales from the ADD Dark Side
Saturday, July 30, 2011 2 Comments
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Disability vs. Difference
by Madelyn Griffith-Haynie, CTP, CMC, ACT, MCC, SCAC
the self-professed ADD Poster Girl . . .
I can and will assure you that
there are many gifts that come
with an ADD/ADHD brain.
There are ALSO more than a few CHALLENGES that are rarely understood by those outside the diagnostic population (along with the rare few who live with them and love them — AND spend a ton of time researching and reading and asking and observing and listening from belief!)
AS I SEE IT, there are far too many posts sprinkled around the internet quibbling over the extent to which ADD is what kind of a disability (affecting “major life activities” negatively), extolling the supposed benefits of an ADD/ADHD brain, or reminding everyone reading that ADD is not all bad, right?
No matter how well-intended, I believe those posts are
short-sighted and wonder if they aren’t potentially harmful as well.
It certainly is appropriate — and accurate — to note that *all* disabilities have their silver linings. It’s important to keep in mind, however, that we ALSO need to take care that we do not ignore the disadvantages in our eagerness to slap a friendly face on it all, singing out ONLY with “the benefits.”
Presenting an honest, balanced picture of advantages and challenges – to ourselves and to others – is important for any number of good reasons — especially with the “invisible” disabilities.
THREE of those good reasons follow below.
3 good reasons not to be mindlessly seduced into positive thinking:
Reason #1: Denial-based self-esteem quickly turns to anger & dismay;
reality-based self-esteem is solid and lasting.
Those of us who accept ourselves WITH our challenges have a source of self-esteem that can be strengthened by the acknowledgement of the reality that, compared to the neurotypical population, we are “swimming upstream” much of the time.
Yet look what many of us have been able to do with our lives!
- We had to learn work-arounds, certainly, and those who are still struggling will have to do the same, but it is certainly DO-able.
- Only once one learns what one must do to avoid “tripping over your own feet and falling into holes” (and after one develops the habit of “doing what you know”) can the accompanying gifts of ADD become an advantage in the love-your-life race.
Reason #2. LEGAL protections and accommodations are reserved for disabilities.
The intention of legal protections like The Americans with Disabilities Act (ADA), and the Individuals with Disabilities Education Act (IDEA), is to make sure that the playing field is level; that those with disabilities aren’t held to standards obviated by their diagnoses.
For better or worse, disabilities that have physical symptoms “out there” for anyone to identify clearly seem to work with a different playbook than the one handed to those of us with neurobiological disorders:
- Granted, it is much easier to draft legislation and enforce compliance for physical disabilities.
- It has always been a bit dicey that Executive Functioning disorders are so difficult to quantify, and that diagnosis relies heavily on personal history.
Whoa! We’ve got a disorder that we can’t test for and it’s based, essentially, on self-report?
Of course, the flu is diagnosed in a similar manner — basically, on what doctors and nurses observe as well as on self-reports.
However, because ADD first-line medication is a controlled substance, government regulators and politicians with little to NO medical training — ignorant of even the most basic fundamentals of psychopharmacology or neurobiology — actually believe they understand enough to oversee the diagnostic process to make sure that ADD experts (who have spent entire careers working with ADD) are not “over-diagnosing” or “over-medicating.”
Surely I am not the only one who clearly sees this particular naked emperor’s privates, but sometimes I feel like that lonely little kid who was the only one who dared to “Sing out, Louise” in that fairy tale.
Wait! No Test?
Yes, it is true that there is still no “test” to quantify diagnosis empirically. That does seem to complicate matters.
Still, we have ample precedence for *believing* the reports of those who are challenged, and for trusting the diagnosis of medical professionals trained to separate the sheep from the goats — beyond the “Tell me where it hurts” investigations that most good doctors ask early in the diagnostic process, that is.
Individuals who are nearsighted (or color-blind) have been identified throughout history primarily through the belief that they are honestly and accurately reporting what they can and cannot distinguish visually.
Nobody suggests that “anybody COULD read the fifth line on an eye chart if they REALLY wanted to!”
NOR would anyone sane opine that those who struggle for visual focus are overstating the extent of their struggle or its negative impact — NOT ONLY on “major life activities” such as reading and learning, but also on “normal” focus-based activities like driving, cooking, cleaning and home maintenance.
- Nobody discounts Gramma Gert’s nearsightedness simply because Uncle Bob’s self-report indicates that his vision is even worse, or accuses Uncle Bob of faking it because Gramma Gert can read signs that Uncle Bob insists he cannot.
- Nobody argues about the validity of the diagnosis or questions the extent of consensus among eye doctors, “since there is obviously little diagnostic agreement” if Gramma Gert and Uncle Bob received the same diagnosis when their vision is obviously very different.
- It doesn’t seem to be a stretch for folks to understand that a group of “nearsighted” individuals could have degrees of impairment on a continuum.
- Few would insist, even, that a color-blind child share the task of putting away the laundry, INCLUDING matching the socks “because it would be unfair to the siblings who are expected to do so — PLUS we don’t want to coddle or enable the child who claims s/he can’t differentiate colors.”
Happens to US all the time!
Despite over 25 years of difficult, frustrating and time-consuming ADD Advocacy on my part alone, I have seen FAR too little change in the general population in their willingness to believe ADD self-reporting — or to understand why two people with the same ADD/ADHD diagnosis might easily have vastly different presentations of affect along the attentional continuum.
- The implications of dysregulation of the Executive Functions are understood by far too few.
- Reportage in the popular press is woefully inadequate, under-researched, and frequently misleading, despite the ADHD Expert Consensus Statement signed by 75 of the TOP ADD professionals — web-published initially in 2002 — attesting to the fact that there is NO field disagreement that ADD/ADHD is a “real” diagnosis that causes significant harm to the lives of the individuals who fit within the diagnostic borders.
I sometimes wonder if the lack of belief in ADD as a significant impairment is due, in no small part, to our eagerness to point out the “gifts” of ADD, undercutting, in the mind of the public, the extent to which the challenges can be daunting.
Excerpt from the International Consensus Statement on ADHD, January 2002
(all emphasis and formatting mine, words unaltered):
“ADHD is not a benign disorder. For those it afflicts, ADHD can cause devastating problems.
Follow-up studies of clinical samples suggest that sufferers are far more likely than normal people
- to drop out of school (32–40%),
- to rarely complete college (5–10%),
- to have few or no friends (50–70%),
- to underperform at work (70–80%),
- to engage in antisocial activities (40–50%), and
- to use tobacco or illicit drugs more than normal.
Moreover, children growing up with ADHD are more likely
- to experience teen pregnancy (40%) and
- sexually transmitted diseases (16%),
- to speed excessively and have multiple car accidents,
- to experience depression (20–30%) and
- personality disorders (18–25%) as adults, and
- in hundreds of other ways mismanage and endanger their lives.”
Yet despite these serious consequences, studies indicate that less than half of those with the disorder are receiving treatment.
Complete text with all signers names and contacts
(ending with 15 small-print pages of references and citations, double-columned)
is available as a free pdf download from the website of noted ADD Expert, Dr. Russell Barkley.
CLICK HERE TO ACCESS
Reason #3: That “look on the bright side” paradigm can be harmful.
The “Don’t be Debbie Downer” paradigm is as unthinking as counseling parents mourning the recent loss of a child to be grateful that the child graced their lives at all. It sure sounds cruel framed in that fashion, doesn’t it?
And it IS cruel, actually, to leave “positive” posts as breadcrumbs for those still struggling with Executive Dysfunctions, searching the web for information and relief, without acknowledging the very real struggle that many face *before* assuring anyone reading that others have found ways of stepping into their own brilliance none-the-less.
I would like to invite everyone who scatters content breadcrumbs on the attentional information trail to take a moment before posting, to re-read what they’ve written and to edit, if necessary, to present a truly balanced portrait of attentional spectrum disorders whenever possible.
“It takes a village to educate a world!”
Related Articles here on ADDandSoMuchMore.com
- The Interplay between Diagnosis and Grief
- Swimming Upstream (ADD & Underfunctioning: Einstein at the Patent Office)
- Avoiding the Holes in the Road
- Transformational Rant
- I Have A Dream
- Sis Boom Bah!
Articles in the Executive Functioning series:
Related articles from around the Web
- Please Stop Whitewashing Autism (Psychology Today)
- How can Positive Psychology be More Open to the Negative (Psychology Today)
- The Positivity Fairytale (indisposedandundiagnosed)
- It’s OK to be sad sometimes (cauldronsandcupcakes.com)
- Concern over the use of the social model of disability in the autism community
- Whose disability is it, anyway? (embracingpsnparenthood.wordpress.com)
- Rethinking thinking (seattletimes.nwsource.com)
- Libertarianz Policy Relevant to Autism / Disability Issues, in the 2011 NZ General Election (autismandoughtisms.wordpress.com)
- Barbara Ehrenreich – Smile or Die (YouTube)
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