Autism Over the Years

Autism Over the Years - Should I share this old autism journey with young mothers or anyone else traveling the long treacherous road called autism?  I can't help from turning around and looking back at the masses of families still building behind me.  The best news is that the road has changed so much over the past 20 plus years.  Though the road itself is different, it's still a road of hidden craters, giant roadblocks,  surprising detours and untold stories of heartache.
I guess the thing that's got me going on this new blog adventure is that my son turned 21 last November.  Certainly a milestone in anyones' life, but when you're severely autistic it's more than a turning point.  It's a jumping off place, and the precipice that you're looking down from requires a parachute.  The big question is... "What will that parachute be?"  

I've spent much of my life pushing through misunderstandings, fears and judgements of a condition that had hardly been a blip on the radar in 1991.  Texas Childrens Hospital just hadn't seen a bright, intelligent child with so much language come crashing down...lose all language and most of his awareness.  In 18 months of hospitalizations, and almost every single specialty poking, proding and testing, not one "specialist" had an inkling of what had happened to my son, Britton.  They all had a drug we could try, but they all did more harm than good. (e.g. high doses of Depokote melted his hair)

Not many families have walked this road before me.  Not too many tracks in front of me lead the way.  I wish I had a map, a GPS, honestly, I'd take anything that would give me direction of where we go from here.  Mostly I cling to a book full of Jesus' words of hope and encouragement.
What I've found so far is that the world just isn't ready for adults with Autism!  I know this because my son goes with me or my husband everywhere.  The staring, the comments, the fear all pile into one big reason I should just realize that the "public" does not want autism in their midst.  Most of us fear what we don't understand.

I tried something new this summer.  Well, the truth is,  I just wanted to "help" people stop staring.  I put autism awareness t-shirts on my son before venturing out.  It was an interesting study in human behavior to say the least.  My son seemed to enjoy it.  It explained things and so, he seemed to feel comfortable that people at least knew why he flapped, or hummed or made loud noises.  It didn't stop the comments though.  (To the woman in Schlotskys who asked me, "Is he retarded or something?" Seriously?  Shame on you!)   I am still amazed that people can be so cruel and have so little patience for those who CANNOT conform to society's idea of "normal!" (To the moms out there with your young children staring, YES, tell them not to stare!!!!  It's NOT okay, it never has been and it never will be.  Do I really need to tell you that?)

How often I've wished to be invisible!  But as another autism mom said to me recently, "I always feel as if there is a giant spotlight following us everywhere we go."  No kidding.   I'd add to that a foghorn to announce our arrivals and departures from all public places.  My son has currently begun to have a new "stim" with the bathroom.  You wouldn't think that would be so bad, but he's male and I'm female.   I can't go into public restrooms with him.  I stand outside, trying to stay calm while I pray, "Please Lord, help him keep his clothes on!  Please don't let him touch anyone and upset them!  Please let him come out before SUNDOWN!"  These are all scenarios I have had to deal with before!  It's not something that many people can relate to or begin to understand.  (To the many men, yep, total strangers that I've begged to step into a public restroom and check on my son, God bless you for your help!)  Autism changes with the years, but you just have to become more creative and grow bigger "autism muscles."

Maybe society needs a REAL picture of what autism looks like? (see my pictures)
Is it like Dustin Hoffman's Rain Man, or Kiefer Sutherland's son in the weekly series, Touch?  That's not an easy question.

Autism comes in all shapes and sizes, all genders and all races.  The truth is most everyone has been "touched" by autism in one way or another.  For families of autistic children, touched just isn't a strong enough word.  I'd go more for body slammed, or maybe even crushed, as a more apt description.  I read a book once, By the Light of the Moon, by Dean Koontz, where one of the main characters had autism, and he could basically do magic because of it; sort of like an Autistic Savant, but with some Harry Potter flare.  I loved it.  How I wish that there was some magic gift that would be big enough to redeem my son from so many behaviors that are, well, not easily redeemed.  But until someone hands him a magic wand, I'll be reaching back  for the only parachute that  I'm willing to stake my life on.  (Proverbs 3:5, "Trust in the Lord with all your heart and lean not on your own understanding...")  Boy, oh boy, how often have I repeated those words? More often than I can remember of course.  You too?  So, where do we go from here?  What happens after 21?  I'll keep you posted.  :)