Wednesday, June 23, 2010

Other Folks Finding Autism Over Age 40, Me, and Susan Boyle

Billy Joel - River of DreamsBilly Joel Field of DreamsImage via Wikipedia
Other folks besides me are waking up to diagnoses of learning disabilities and autism at mid-life.  It's good to know that I am not alone... so much of the discussion of my condition is with children.  It's nice to see the adults holding forth.  Blogs that I have been reading include: Falling Into Place, Aspie Teacher and  Journeys With Autism.   Reading these blogs makes me rethink my whole diagnosis of Non-Verbal Learning Disorder( NLD) -- there are now days, I think I have it and don't always want to face the fact that I have NLD, or, maybe not, as many of the gifted and talented suffer from bits and pieces of problems on the autistic spectrum.  For the time being, I will leave this question to greater minds than my own, as Autism Spectrum is marked by heterogeneity... There are no two of us alike as the science now stands

Where our commonality is:

  • Sensory Processing Disorder... Although I am not Sensory Sensitive on the Dunn's Model of Sensory Integration Processing (I am Low Registration -- the outside world doesn't  register on my senses: sight, vision, touch, hearing, smell), a lot of the sense of being overwhelmed by the outside world and feeling completely strung out at times from external stimuli is the same. 

    • I started this whole quest by wondering why I have so many problems with organization and time mangement and feeling so very stressed while trying to hold a job and maintain a household and pursue interests.  These folks detail very nicely what it's like to feel so completely strung out and the need for peace and quiet.  These days I am not feeling strung out except when I've had a particularly tough session of physical or occupational therapy.  Since I am at home, it is easy to cope with the fatigue by simply lying down and listening to soft music for a few hours or taking a nap when I need it. I totally identify with the WWII soldiers knitting in occupational therapy in the picture above.
    • I am going back to thinking about work and have been pondering what environment will work for me... more on that later.  Whatever it is, it can't involve being in a cubicle.  The days of being a cube rat are over.

  • Coming to a stopping point or slowing down.  A number of us have just dropped out of the mainstream.  I wonder how much of this has to do with age and hormones at mid life as well.
  • Masking... Hiding the disability and the enormous effort to keep up the mask.
  • Good, Supportive Husbands!  Here's a shout out to the hubbies!  And a Big Thank You for Putting Up With Us As We Are Stumbling Through This!  And Another Big Hug For Celebrating Us! 

  • Being a woman.  I can identify with non fitting in with the average woman.  I am direct... there's a lot of code talk with a lot of women. I am analytical...there's a lot of tending (Are You OK With This?  Are You Sure?  We Don't Have To Do It This Way, If You Don't Want!  Oh, Lets Split It in the Middle).  

    • For a long time, I have been more comfortable working with men, because we don't have to do as much tending.  But even that has fallen apart and I think it has to do with no longer being young and cute and flattering men by learning from them.  
    • I think we are all wrestling with Women's Liberation and what that means today.  What, where and how do we arrange our lives.  We are not cut out to be a housewife.  We have our interests that define our being at the core and it is necessary to pursue them for our own mental well being.  Virginia Woolf and "A Room Of Her Own", where are you?
    • Being the "little philosopher".  Women on the ASD tend to be more of the "little philosopher" and less of the "little professor".   I haven't blogged too much about this part... because I have been so wrapped up in the mechanics of vision, balance, hearing, etc.  But I have been pondering a lot about how I interact with people and how much of these thoughts can be applied to personal interactions, society and life in the 21st Century.  I've been too busy being the "little professor"!  One thing at a time!

  • Executive Function and Organization:  Overkill or Underkill.  
Where I differ is:
  • No one else is currently doing therapy and blogging about their own personal experience with it.  There are a number of parents blogging about their kids but not themselves.  Folks have either been there done that, started and stopped it or not tried it for a length of time or not wished to discuss it in detail on a blog.  The net result, is that folks have just decided to accept what they are and really want the world to accept a diversity of neurological conditions.  

    • Maybe they are romanticizing Autism and are just fooling themselves in certain ways.  
    • But, then again, maybe not. And maybe, there is a greater lesson to be learned with the ASD community leading the way:  that the vast panoply of neurotypes and the impact that the variety of neurotypes has on cognition, emotion, social interaction is revolutionary.  The Brain Revolution points towards enhanced neurocognition for all  people. Its impact on Autistic Spectrum is most notable,  because ASD can't be molded into our current because, ASD is in a leadership role for helping to define new ways of interacting cognitively, emotionally and socially that will benefit our society as a whole.  I mean this, not just by defining new paradigms of productivity, neuroscience, or technology, but new paradigms of human rights, tolerance and democracy.  ASD demands a fluid response by the neurotypical society.  Given our shift into a society dominated by class structures, how can ASD fit in, when belonging to a class involves social skills?

  • As for me, I want to have whatever God and modern science can give me.  Other folks have problems getting too much sensory information.  I have the opposite problem.  I want to see, hear, smell, and control my body.  

    • If you've been reading along, I can not express strongly enough the thrill it's been to see the city skylines of Philadelphia and New York city, the natural beauty of Bucks County, the art galleries of Chelsea, or a Picasso exhibit more clearly.  One day, I will get the 3D vision to see the Hamilton Sculpture Garden in all its glory.  I will absolutely scamper about with pure delight in the Museum of Modern Art in NYC or the Noguchi Museum or BAM in Brooklyn.  When I get 3D vision, I will get some clay and try to make some sculpture.  I am able to draw pictures to some degree and can crank out a self portrait from the shoulders on up.  
    • I just started crying in my car when I heard the lyrics from Billy Joel's River of Dreams as I realized how much of that song I have been missing.  When I realized that I could actually sing on key on that day when I was doing the dishes and started to belt out, somehow appropriately, I Dreamed A Dream from Les Mierables, I fell down on the floor and bawled my eyes out and thanked God from the depths of my soul and mourned the years of cawing like a blue jay when I wanted to warble like a songbird.  My soul stood up and applauded when I turned on Handel's Hallelujah Chorus and heard it in a new glory.  I have just started getting my hearing fixed and I await further joys. As the bass recitative in the Messiah:  The Trumpet Shall Sound and The Dead Shall Be Raised Incorruptible And We Shall Be Saved.
    • I have just begun to feel rhythm and to know what it is to truly move my body in time to the beat.  I can feel the music in the Kimmel Center.... huge waves of sound flowing over my body.  I actually go down to a 20 ms delay in my Interactive Metronome therapy where I actually clapped in time to the beat and felt the pulse! 
    • Being able to wear high heels without tipping.
    • Not being afraid of heights.
    • Not dropping or slopping stuff up... Not tripping over myself.  Need I say more. 
    • Getting more stuff done that I really want to get done.  As my executive function improves, so does my ability to do what I want to do.  I have just started to scratch the surface on this.  As Dr. Herzberg says, "Change the Body, Change the Mind."

  • Understanding the need for a pack, posse, crewe, or group.  Folks do seem to want to have relationships but are not viewing these relationships systemically.  I can't criticize because I'm not there yet, either, at least in part because my senses don't work properly.  I don't know where I am with the whole Theory of Mind thing and I guess I will find out later after I finish physical and ocucpational therapy.  With a bit of luck, this may straighten itself out as my body starts to respond to the outside world.  But I do think a critical stage of development got skipped in adolescence.  I was just reading the Penn Alumni Gazette and the article by Vivian Selzer, "Alone Together" about her theory of Dynamic Functional Interaction (DFI)—which spotlights the “central role of adolescent peer groups as a peer arena,” as she puts it, and the impact of that arena on adolescent social development.  I would take that theory a step further and look at the interruption of this development and its interactions with cognition and emotional development as well.    The whole comparisons—Upward, Downward, Similar Other, Range Establishment-- and the glitches: Isolated Game-Player Loner, to Veiled Mission-Dedicated, to the more graspable False Fa├žade-- ring true.  For normal folks, its weird to stumble upon something that is wired within themselves in an academic context, but that's how I am finding this stuff out.  It's all I can do until my senses come online as best as they ever will.  More on this later.
  • I want to accomplish things in my life.  I know that whatever the end result of therapy is I will still have some days that just are going to be a bit out of reach at times.  But I also know that coupled with a high moral purpose or the sense of being in flow or doing things that make me very happy, it will all be worth it.  Even in the past with my flaws, when I got stuff done that was very important to me, it was worth the suffering that it took.  I just have to balance the pain-pleasure so that I am not wasting my strength on stuff that won't make me happy.
At the end of the day, I am where Susan Boyle was: there are a lot of hurdles to leap over; but, Life is Beautiful.  I think it was a tremendous act of courage to give the performance she gave given her lack of resources and support: Susan Boyle's Audition.   Also, there was a profound joy that spurred the adrenaline to give her the energy that she needed to leap over her disability.

Dr. Robert Canfield had a very interesting comment on his blog about Susan Boyle that I believe can be applied to other people with disabilities and their attempts to overcome them:

'Buried within the human psyche are feelings, yearnings, anxieties too deep for words, usually,' he wrote.  Always it is something outside ourselves that touches us, somehow, where we feel most deeply. At such moments we remember that we are humans - not merely creatures, but human beings, profoundly and deeply shaped by a moral sensibility so powerful that it breaks through our inhibitors; it can burst out, explode into public view, to our own astonishment.'
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