DSM-V

Well, the new DSM-V (Diagnostic and Statistical Manual of Mental Disorders), the bible of psychology is now drafted, as of this week.

My head is swimming, especially considering earlier blogs on semantics and labeling.

There is no more Asperger's Syndrome.  Aspies will now be considered "Autistic Spectrum Disorders."  What a weird experience, I presume: to have a name you have likely grappled with, identified with, used to find others like you, or explained time after time YANKED out from underneath you.  Now you are situated along a continuum, seen as a mild version of others.  Aspergers' is now referred to as a "personality type" and "is outside the scope of DSM, which explicitly concerns clinically-significant and impairing disorders."

There will be no more Writing Disorder.  No more Learning Disability, Not Otherwise Specified.   The process of categorizing has always felt a bit like squeezing round pegs into square holes (often for purposes of school identification or insurance reimbursement).  However, now I worry there will no longer be a hole into which to do any squeezing.  I can think of 20 kids I've seen in the last month that have a genuine writing disorder.  What do they have now?  DSM proposes the broad category "Learning Disability" for the first time.

A Reading Disorder can no longer include difficulty in reading comprehension.  Arg, we lose focus on the fact that the process of reading is making sense of text (not just pairing sounds and symbols rapidly).  I love the irony of a spelling mistake in APA making the case that reading is only decoding:

The new name for a reading disorder is "dyslexia;" a disorder of mathematics is "dyscalculia."  Turning back the clock?  The stated intention is to be more consistent with international use.  Then, one line later, the APA cites US legislation (reauthorization of IDEA) to de-emphasize the use of discrepancy in identifying a learning disability.  US legislation determines whether someone has a mental disorder?  That bill was passed so that congresspeople could get re-elected or pass their pork-barrel projects, and the DSM cites this alongside peer-reviewed academic research to justify their clinical category?

I'll blog at some other time about the various proposals to make sense of AD/HD.  That will end up being the biggest change for children in the DSM-V.

DSM-V goes into effect 2013.  They are accepting comments beginning in April.  I'll put in my two cents.

At this point, I'm reeling from the shock.  After IDEA was reauthorized, I could at least hang my hat and thinking in the DSM world.  Now these changes worry me even more.  Before I rant too much more, I should probably make sure I'm sure I'm not just over-reacting to change.  Oh look! No Worries! The new DSM has a new category for me and all those who share my concerns:  Adjustment Disorder With Mixed Anxiety and Depressed Mood

Potato, Potahto? Tomato, Tomahto?

To build on the post by Anonymous:
One of the things we struggle with in our field is terminology. Learning Disabilities? Learning Differences? Dyslexia? Specific Learning Disorders? How can we purport to know anything about learning and it's individual variations if we don't even know what to call it?

For one, we can rest assured that the choices are better today than they were more than 40 years ago. I would hate to tell a kid to their face that they had "minimal brain damage" or to explain that they were "educably handicapped" (or as my 17yr old used to say, "candilapped").  Reading disorders used to be named according to what they looked like, such as "word blindness" or to make it really fancy, put it in Latin: "Strephosymbolia" (twisted symbols). 
   
Ever since the early coinage of the term LD in the late 1960's, the field has struggled to separate itself on one hand from more general mental delays (hence, the addition of "specific") and also differentiate itself from "normal" developmental variation (hence the prefixes DISability or DYSlexia).

I do find "disability" to be a misnomer, because I spend much of my treatment hours persuading children that they ARE able, given the right strategies, practice, etc. 

In my own mind, the lack of agreed upon terminology reminds me to be humble. What medical field would still not have a name for the disease they are curing? "Hmm, should we call it Cancer, or..." The fact that we don't even have our terms straight yet tells me how early we are in our thinking. No blood tests yet, no diagnostic fMRIs, no Hippocrates to lay down the tenets of ethical treatment ("First, do no test bias").  I guess it could be encouraging that the field of Physics still hasn't quite settled on whether LIGHT (the most trusted way we could be said to know something directly) is a particle or a wave.  Sounds a little bit like our field of LD calling it one thing to a kids face and another thing to a suit-sporting table of professionals at an IEP.   In the mean time, while we muddle through our terminology differences and DSM revisions, I tap back into that humility notion and listen to the way that kids talk about their own struggles.  That's probably the best way to find out what it feels like from the inside out, and it's the best way to know whether they have recovered, or compensated, or overcome their, um, their...oh, whatever you want to call it.  

Unfettered Potential

I have to fess up to one of my educational fantasies.  Often, I’ll be working with a kid, and I imagine what learning would be like without cognitive roadblocks.  What we ALL would be like without these roadblocks, but especially them, right here and now.  

I see the seeds of some good idea that the world needs to know about, and it isn’t coming out.  The darn handwriting just doesn’t get it out fast enough before the darn monkeymind jumps on to some new thought.  Or the words weren’t accessible - just stuck right there on the tip-of-her tongue - so why try to explain it anyhow.  

I feel similar frustration trying to get needed ideas in.  A 9-year-old can give me a phenotypical run-down on the difference between Indian and African elephants, but her brain never downloaded the sound-symbol codebook to be able to read a first-grade book about them (“Huh? A Frickin’ Elephant?!”).  

What would life be like without these roadblocks, these input-output issues, these cognitive bottlenecks?  Imagine the DaVinci Flying Machine that was never made because of poor visual-spatial skills.  Or The Great American Novel never written due to waning attentional skills.  Arg. 

Often my fantasy of untapping potential drives my remediation sessions with a kid; I’m madly running through my ever-increasing key ring, fervently jamming well-used (or newly constructed) keys into quickly rusting locks.  Then quickly trying to duplicate the keys and hand them over before a session ends, or a kid wants to just do homework, or some new profound tangent pulls us away.

Assistive Technology shares this fantasy of mine.  With some skill building I’m a fan of  voice dictation software (www.macspeach.com, www.nuance.com) to bypass graphomotor weaknesses, mindmapping software (www.inspiration.com) to scaffold organizational skills, reminder systems (www.reqall.com) to aide long-term memory retrieval, text to speech scanners and pens (www.kurzweiledu.com, www.quickpen.com) for decoding weaknesses, and voice recording and uploading pens (www.livescribe.com) for note-taking assistance.  [Hmm. Maybe this is worth its own blog.]  So, problem solved?

But sometimes I am of the mind that these cognitive bottlenecks are a GOOD thing.  Perhaps they hold gifts wrapped in frustration.  

For one, the process of figuring out ones’ learning is a more powerful tool than effortlessly gliding through school and then hitting a brick wall and having no way to recover.  I worry about this when I see an 11-year-old with working memory skills in the very superior range (stronger than 98% of their same-age peers) and executive functioning/organizational skills within the borderline range (below the 9^th %ile), who rightly claims “Nah, I don’t need an assignment notebook because I remember my assignments.” [No doubt he does, but there’s no way to undo those compensatory mechanisms and learn how to use an assignment notebook in Junior Year of High School in AP Class content.]  

And does my image of unfettered potential even exist? A disembodied black box mind that effortlessly inputs information and exudes brilliance with no friction or resistance?  I am too much a believer in Whorfian thinking and know that language and culture must change our thoughts.  So a kid with an auditory processing or language disorder would be a different thinker without the bottlenecks.  And I like this kid’s mind too much to be trying to change it!

A final reason cognitive bottlenecks may ultimately serve us is that they lead us toward our proclivities.  Although extreme, consider the likes of Stephen Hawking, of Temple Grandin, of the Jill Bolte Taylors of the world.  Annie Sullivan had almost completely lost her own eyesight before learning sign language and meeting Helen.  Although clearly nowhere on the same scale of genius, personally, I have no doubt that my own frustrations coming up with that right word on the spot have led me toward expressing my truest thoughts and feelings non-linguistically through music.  I don’t know where I would be without busking, writing songs, and gigging regularly.  

Ultimately, these days I find myself reconciling my fantasies for unfettered potential (more Darwin flying machines!) and my respect for our existing neurocognitive architecture with an ever deepening faith in process over product.

I’m learning that the keys we uncover in our resilience serve us well beyond the immediate ease of showing our smarts.