Communication & Trust

   i don't remember why we took this photo.
   Possibly it was a safety valve for getting angry.
   You see, Max wasn't supposed to bring the entire cereal box into the living room, there being so much potential for the whole thing spilling & being so messy.
  But by the time he was this age, i would've known the difficulty of conveying this to him.
   i deal in words.  He does not.  Even less so back then.  i have, by well-placed questions, caused people to reconsider:
                -  the usefulness of 5 syllable words over one syllable ones
                - look at different political and religious stances that they had previously held as perhaps not so off the wall as they'd thought before.  Sometimes just by the gentle questions someone will even do an about-face on the issue.
    But i cannot convey to one autistic kid that not being allowed to bring the entire box into the living room does not equate to, there is no more food for you, ever.
   Because that is what it is about.

  Max was about 5 in this photo.  He is 21 now.  He no longer brings cereal boxes into the living room. But communication is still a problem.
  To figure out what he wants, we do a 20 questions sort of dance.  "Is there anything you want to talk to the doctor about today?"  "YES!"  "Okay.  Is it your medicine or something different?"  "Medicine."  
"Do you want a different medicine, or more of this one, or less of this one?"  "Different medicine."  "What bothers you about this one?"
  Here i followed with a short list of possible side effects with a request for more choices. "More choices."
   Is this getting tedious to you?  It is to me.  Several minutes later, we figured it out, and had a major communication triumph to bring to the doctor.
 Later still, we left the office with different medicine, which seems better for him.

  There's also trouble with trust issues.  While he has enough experience now to know we'll feed him, he also has enough experience to know his memory is way better than mine.  Once i said we'd go to a Sesame Street day, then forgot.  My own events don't always get on the calendar, and i take it in stride.  Max couldn't tell me what i forgot, and we dealt with a major meltdown.  It was a couple weeks later before i remembered Oh, yes, THAT'S what that was about.

  We're still trying to figure out the communication thing.  As he's grown, i've had more time to read about it.  (When Max was in preschool, his wonder-full, well-meaning teacher gave me a huge binder about how to communicate.  i was so overwhelmed with the dailiness of living with him, that i forgot i had it & only recently uncovered it.  It would have been better if someone could have gone through it with me.)

  If you'd like some tips about communicating with people with autism, the Indiana Resource Center for Autism has great articles.  Here's a short one specifically geared to communicating, helping us see their point of view:
http://www.iidc.indiana.edu/index.php?pageId=519

  Another take on trust and communication comes from fellow blogger Dave, who works with adults in the special needs community.  While the story he tells here is representational of many individuals, not one in particular, attempting to put yourself in Carla's shoes can give some insights on why trust and communication can be difficult:
http://diveboard-dave.blogspot.com/2011/12/fictional-friday-carla.html