Reflections of and on a probably Asperger's parent parenting an Asperger's kid (or 2)!

dragon pups

dragon pups

Monday, December 3, 2012

DSM change

SO, thoughts have been FLYING around about this business for some time.  I kinda thought I'd wait and see how this all played out...

So, it played out today.  The news is that Asperger's is NOT a condition/ diagnosis anymore.  As I understand it, my son will now have "High Functioning Autism".

There are MANY MANY blogs and posts discussing what this semantics means.  Will it be "easier" to get services now that he has "autism" in his diagnosis?  Will people assume that he functions higher than he does?  Or lower than he does? Does it make the spectrum wider or longer? or too wide and too inclusive?  Will it stop this debate amongst parents that we just don't understand each other 'cuz we do or do not have verbal kids, or poop smearing kids, or socially backwards kids?  harumph.... not likely.

What does it mean for the legions of adults and youth who have gained a sense of identity, of community by being Aspie or Asperger's?  You don't think there is a big group out there?  Check out Wrong Planet's website.  I follow 19 pages on Facebook with Asperger's or Aspie in their title... that doesn't include the dozens that use ... creative ... names to describe their unique brand of crazy. The word does NOT belong to the DSM.  There have been several posts about how the community will continue to use the words "asperger's" and "aspie" even though doctors and insurance companies will not.  

I guess now we will ALL become self-diagnosed, hmm? :)

And why not? Who is to say that there should NOT be a sense of community with this label, these attributes?  One post today likened the feeling to telling an African-American that they can no longer be African - just American   While that is a whole political hot pot that I do NOT want to get into - I think the point is VALID.  We all often find that the sub-group we adopt IS important to out sense of identity, of self-label.   Ethnic origin is only ONE means by which we sub-group ourselves.  Have you ever noticed that the FIRST question people ask you is "where are you from?"... 'cuz we also like to sub-group our selves by geography - people ALWAYS have.  And it is VALID - I am very much shaped by the fact that I grew up in Southern California, and that my family is from Appalachia... and that I live in Appalachia now.  Often we identify ourselves by occupation.  I can spot a cop or a soldier pretty readily in a crowd.  Teachers are EASY to see as soon as they open their mouths.  I can immediately recognize the people with oil under their nails and ground into the cracks of their hardworking hands, or the calluses of a guitar player.  Have you never identified your self by your religion?

We all lump people into categories all the time.  We are pretty much designed to do so.  Brain based learning shows we learn by "chunking" - a horde of information related to each other - that's lumping to me.  What ever the label, big or small, we look for it, we use it, to identify ourselves.  I chose the university I attended BECAUSE not only did I expect to meet a certain caliber of people, but I expected to be identified with that caliber of people, with a group that uses an honor code, lives it daily.  Living the Girl Scout promise is what makes me a Girl Scout, not the $12 registration fee. I am a card carrying SASS member (single action shooting society), not because I have a card, but because it shapes the way I look at the world.  

The other side of this argument is that a word is "just" a word.  OK - and we ALL know that we instinctively and immediately know those people in our lives who live by their word, or just use words for convenience.  So sure - it's just a word.  And how you use it is YOUR choice, and all the rest of us get to make OUR choices and we will make judgments (choices) based on how you use it.  Sure, we could use other words.  We could all be Geeks.  We could resort to all the degrading name calling labels that have been used for centuries for those who stand outside your realm of "normal", those who stand on the "fringe" of society, who are the Movers and the Shakers, those Idiots with Harebrained ideas like electricity, or those who don't have words but FORCE you to face your inner humanity, to care for someone different from yourself.  We could use other titles we made over the years, for ourselves - those titles that assume we are better than you because of our differences, those titles that demean you just as you demean us so we are all "even".  We could be your Alien Overlords, if that suits you better.

But part of being "different" is that you are "gifted" with the opportunity to see that different is NOT less, or more - it is ONLY DIFFERENT.  So we have found this word, that was once legitimated by the "medical profession" and grown it into a new thing, a new identity that gives us AND you permission to be different.  It has become a new thing, a label for a group of features, attributes that remind us of ALL human worth, in ALL of its diversity, a name that lets us give ourselves permission to be distinct and odd and good all at the same time.  We, the people who YOU once labeled, have taken ownership over this label, found it to Ring True in our Hearts as a Name for what we ARE, regardless of how others use it.

So, kiss my grits, DSM.  The world of doctors and insurance companies and "medical professionals" no longer owns the word Asperger's.  These labels (Asperger's and Aspie) are strictly the province of those "self-diagnosed" people who recognize a pieces (or pieces) of themselves in each other and we create a community of our common attributes, an identity that lends us respect for each other and ourselves. 

The fighting with insurance companies and schools for services will not change.  The use of specific labels in lawmaking and social rhetoric will not change, even if the specific label does.  The American Medical Association will re-write it's own Diagnostic Manual gain in 5-10 years, anyhow.  

The sense of identity gained by Aspies by calling themselves Aspies won't change either.

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