Thursday, January 13, 2011

Gaining Traction in Autismland

I have been feeling very stuck in Autismland.  It is a feeling that comes along every so often, like being stuck in the snow in your car.  You hit the gas, wanting to go somewhere, and the wheels start to spin and spin.  Maybe you inch forward or back, but you keep falling into the hole you are spinning, deeper and deeper into the snow.  You can't get to the bottom to get some traction, and pushing on the gas pedal is frustrating and infuriating.  At this point I usually hit the steering wheel and scream, which are almost totally useless activities.  Except they keep me from breaking something nice and fragile, like the turn signal or wiper thing-a-ma-bob.  Which is what I really feel like doing.  But before I get to that point I have a very fast and deep debate with myself.  "I'm stuck.", "No, I'm not, I'll get out of this."  Try to drive again.  "Crap, I'm stuck.", "Noooo, I refuse to be stuck, I will just gun it a bit."  Try to drive and really dig in.  "Shit, I'm stuck!"  "No, you're not.  Just do that same thing again, just a little different."  And so it goes, with the two parts arguing.  The truth seeing part and the avoidance part.  The part that is willing to seek help, and the part that would rather die first.  The difference between driving in the snow, and having a kid with autism, is that you can have this debate for a very long time with your kid.  You can spin your wheels while being deeply frustrated and wanting to scream, and at the same time delude yourself that things are moving along fine.  That is where I have been for a while.

All this does not keep me from loving my son.  And appreciating him.  And playing with him, doing homework, going out and about.  I have been doing all this and more, but at a deep level wanting to scream.  Because part of me has known we are stuck.  Spinning those developmental wheels, or at the very least, not getting the traction we could have.  Should have.  And here is the crux of Autism.  It is all about the development, or lack there of.  And development, Development, with a capitol D, is so damn hard.  Why?  For two reasons.  One, it is a moving target.  And two, typical kids do it naturally.  They proceed from one thing to another naturally, without any fallout.  As babies they go from cooing, to babbling, to using vocalizations to get their point across.  From looking at that thing they want (and everything is fascinating), to crawling over to it, to walking to it, to climbing for it.  And they are exploring all the time, first home, then the close in world, then the outer world.  They just naturally start asking questions about everything they want to know about, and they want to know about it all.  Not so with autism.  Everything is fearful, and many things appear to be painful.  The senses do not integrate well together, so most things are very confusing.  Anything new is to be immediately rejected.  Physical tasks are not a joy, they are too hard.  And that is where you start, with a child with autism.  They live in their own world, because the rest of the world sucks.

But that is also what makes children with autism such brave little beings.  Because even with all this, each of them find their loves and safe places in the real world.  And each of them can learn, really learn, everything they need to know.  My little guy also has a mild case of autism.  His wiring is off, for sure, but he has taken readily to all the interventions and assistance over the years.  When the work is right, he grabs on and goes with it.  And we have made great developmental strides.  He has now hit almost all of the milestones of childhood to his current age.  He has real friends that love him deeply in their grade school way, and he loves them back.  He is totally affectionate at home.  He loves going to school, and has marvelous teachers, helpers, and classmates.  He is learning well, is an ace speller, and can swing the monkey bars like noone else in his class.  And yet.  And yet, that feeling has been on me for weeks, if not months now.  Stuck.  Stuck in his development of his social skills, where his friends and classmates know and love him  but he cannot keep up with their increasing complexity.  Love is only enough if I am satisfied with him being the class pet.  Beloved but limited.  Good for petting and playing, but you can't have a real conversation.  And that is the crux.

Conversation.  True communication.  Where both parties show an interest in one another, and move off to build something together.  Be it a game, a shared story, or a trek through the woods.  I can give my son experiences, throw him together with other kids, make a container for safe sharing, but I cannot make him initiate.  I can demand that he respond, but I can only prompt him to initiate.  "Say hello", I whisper to him, and he will gladly and genuinely say hello.  We have been working on that one for a long time, and as a matter of fact he is quite good at greetings and will often initiate them.  But greetings are not the only forms of communication, they are the tip of the proverbial ice berg.  There are also good-byes, questions, comments, sharing of materials, sharing of ideas, requests, sharing feelings, telling stories, and play.  Play is so complex that it makes the head spin.  Yet it is also so basic.  As are all these forms of communication.  And they all take initiative.  And initiative is what kids with autism do not have, where social activities are concerned.  They can initiate for needs like food, favored solo activities, and safe adult contact, but social activities are a whole different ball game.  Social initiations, appropriate ones, are one of the core deficits of kids with autism.

And this leads me to my break through.  Autism affects every area of a little persons life, and yet it all stems from three core deficits.  I have been spinning my wheels through all these affected areas, while not having a grasp of the traction points I am trying to get through to.  Enter serendipity.  Because of Christmas break Alex has become more disregulated than normal.  Christmas makes all children go insane anyways, due to it being so fabulous, and this year Alex was in the full swing of things.  We spent lots of time out of routine, and he watched way too many movies.  For him, that means six in a week.  And he got stuck in movie land.  Stuck repeating dialog.  Toy Story dialog to be exact.  It did, and did not help, that he got lots of Toy Story characters for presents too.  There is more potential for creativity with toys, but it also seemed to drive him deeper into scenes and dialog.  Why?  Because he has an amazing memory and can repeat all three movies.  So he can skip from one scene to next, and back again, endlessly.  Endlessly amusing himself with all the words and situations, all by himself.  He would bring others in by trying to get them to repeat the parts too, or asking them questions about what came next, even though he already knew the answers.  At first this didn't bother me, because it was showing creativity, and an interest in complex social situations, but as certain themes started to repeat it all took on more of a self-stimulation feel.  And it got more and more repetitive and ingrained.  I couldn't get any traction with him, and I started to get that feeling of wanting to beat my head.  Just then, I looked up.  I looked up into my Autism Book Cupboard.  I didn't have my usual go to book, my bible of autism, because I had loaned it out.  So I looked up at the rest of them, and pulled one down that I had not looked at in years.  I read the table of contents and started to get excited.  I dove in, and it was like a miracle.  It had the answers.  All the answers.  Every question I didn't even know I had been having.   The truth finally hit me.  I'd been stuck.

I'd been stuck, and telling myself we were fine.  Spinning deeper and deeper in the snow, deluding myself that we were getting somewhere, until finally we'd spun so deep I had to look for help.  In some ways I have been stuck for a couple years.  Pleased with his progress at school and with friends, but still troubled deep down because I didn't have a focus.  I didn't have a clear picture of exactly what to do.  And all my experts were gone.  Right through Kindergarten I could rely on Tahirih at the Scottish Rite Language Clinic to be my rock.  She regularly met with both me and Alex, had been to our home and all his school settings, and we could trouble shoot anything.  But he graduated from the program last summer.  School is fantastic, but they are school based.  At home we are on our own.  I had my autism bible, but forgot to look at it.  Then I loaned it out.  I didn't know how alone I was.  We had come to a stand still on a bunch of issues at home.  Food. Dressing.  Creative play.  Getting ready for school, outings, even bedtime.  Resistance to everything was on the rise, with Alex digging his heels in and wanting to do the same things over and over.  I had stopped trying to move him forward on anything, stopped teaching, stopped trying very hard.  Spin, spin, spin.

And then came help.  In the form of a book called Pivotal Response Treatments for Autism.  It is actually the underpinnings and research studies that resulted in my bible, Overcoming Autism, and it says some very important things.  Things I had not noticed before.  "...autism itself may be a much milder disorder than previously suspected...many of the seemingly severe aspects of the disorder may be side effects resulting from abnormal development.", emphasis mine.  And further more, " Some of the core areas that, when treated, seem to produce especially large... gains are:
     Motivation to engage in social-communicative interactions
     Social initiations (initiated by the child), especially those of shared enjoyment and joint attention
     Self-regulation of behavior"

This is it.  These are the areas we need to work, and the other things will fall in line much more easily.  Ignore these three cores, and everything will be an up hill battle.  EVERYTHING.  The book goes on to address all these areas in it's next 250 pages.  I have been reading, and highlighting, dog-earing, and underlining.  I know what I am targeting, and what to work on next.  I see clearly where I have been stuck, and how to get traction in all those areas.  And in the several days since I looked up and picked out this completely ignored book I have been on fire.  I have been trying new things with Alex with great success.  I am both excited, and at peace.  I am grateful for being ready to take in the new information.  Grateful for being stuck.  And grateful I didn't actually break anything while hitting the steering wheel and screaming.  Grateful, and ready to truly drive on.