Postscript to the Birthday Post

There are a couple of things I'd like to touch more on from the last post.

First, it occurred to me when I read it over, that my frame of reference for what was assumed about autism or autistic individuals is likely very different from most of yours, unless you are close to my age or older.  Autism wasn't something people knew much about when I was growing up.  In fact, you'd rarely hear of it at all.  I only knew about it before I was in my teens because a cousin of my mom's had a son who was institutionalized because he was autistic.  I never met him, so I really don't know what he was like.  I only heard my mom and her relatives talk about him sometimes.  All I knew was that because he was autistic, it was impossible for his mother to take care of him so she'd had him placed somewhere.  As a kid, all I could imagine was that he was crazy and probably violent.  This was my first notion of what autism was, whether it was correct or not.  Keep in mind, we're talking about the 1970's here.

My next ideas of it came from a tv show.  St Elsewhere was a medical drama that aired on NBC from the Fall of 1982 to the Spring of 1988.  It was a fantastic show, and on it, the son of one of the main characters was autistic.  Tommy Westphall.  His character was completely replete of emotion, there was nothing about him that ever suggested he felt connected to anyone at all.  He just stayed in "his own world", barely interacting with his family and even when he did, it was always very robotic.  Stereotypical to be sure, though based on what was known at the time, I imagine.  This is the picture of autism I had.  It was the only picture.  Until 1988 when Rainman came out. 

There is a tremendous push in the autism community to distance themselves from that movie.  I don't have quite such strong feelings about it, and I'll get to that in a bit. But among most, there is.  It was probably the first time many people had any idea about autism or what it was like - the movie was so popular, that Dustin Hoffman's character WAS autism to just about everybody who had seen it.  Once again though, we were looking at a person who had been institutionalized for most of his life, who didn't like being touched or hugged. 

The Rainman character was actually based on 2 people. Much like the Tommy character before, this presented a very limited view of the disorder but it was really all we had. So this was my reference, this limited knowledge based solely on what I'd been presented with in the media.  Entertainment media at that.  Sadly, I learned nothing about it in the course of my nursing studies.

While the traits and characteristics of these characters can all be found in people with autism, what was not made clear was how much the disorder varies from person to person.  I don't believe it's possible to find two individuals on the spectrum who are exactly alike in how they are affected and/or how they behave.  I can say that now, after all my years of looking after Josh and having met many other autistic children along the way.  But I didn't know it back then.

In a way, I think Josh is a lesson the universe needed to teach me.  I didn't mention this in the "guilt" post because it's hard for me to admit, but I had a conversation once with my best friend in nursing school.  I remember it very well even though it took place a long, long time ago.  We were in our final year of school and were making decisions about the specialties we thought we'd be going in to once we started working.  The conversation eventually came around to pediatrics and sick kids and how hard it would be to take care of them and we somehow got off on a discussion of different childhood ailments.  I don't remember specifically what else was said, but I do remember saying this: "I think that having a child who was autistic would be the worst thing I could imagine. Can you imagine having a child that never shows any affection or love, that doesn't interact with you, that doesn't want you to interact with them? It would be worse than anything else that could go wrong. "  Deep breath.  Yes, I really said that.  And trust me, it haunts me to this day.  Understand though, I was basing that on what I have shown to be very limited knowledge.  At least these days, there is so much more information available and so much more given to us in the media, there is a much better frame of reference for people. 

But I have Josh. And Josh has taught me a great deal about many things.  He has shown me that he can love, that he wants and needs to interact despite the fact that it is very difficult.  He has expressions and uses them often.  He is not a savant.  But he is not a robot either.

I don't shun the Rainman comparisons as much as some for 2 reasons. First, Josh has many behaviors that are actually very similar to Dustin Hoffman's character.  So while I know that people shouldn't hold that up as the definition of autism, there are certainly enough similarities to make it a reasonable reference.  Second, it was a positive portrayal.  And it was a monster hit.  While it may have been entirely unrealistic, it also brought autism out to many who probably would never have thought about it otherwise.  I won't fault them for that. 

So when I talk about how different Josh is because he is so affectionate and loving, you now know why I see it as, in fact, "different" for a person with autism.

 

OK.  Now, on to something entirely different but still related to the birthday post.

Have you ever wondered, with a child that cannot communicate, how you buy gifts for them???  It's not like big brother, whom I can simply ask, "hey, what do you want for your birthday?" and he'll give me some ideas.  I used to rely on the "if it has anything to do with Blue's Clues, we're good" rule.  But with the series long out of production, there are no more toys/products.  I rely on fresh batteries and the hope that Amazon carries the books forever.  But we need to do something and Josh does like other things.  It's just figuring out what that's the hard part.

So a few years ago, I just decided that it was best to let him show me.  I'd take him to a toy store or department and simply watch what he seemed attracted to. I would get the things he seemed to like in the store but I wouldn't bring them in from the car after we'd get home.  I'd wrap them up later and voila!  He had his presents.  Josh doesn't care that he's seen them before, in fact, he's pretty happy about it since he'd wanted them in the first place.  At this point I just let him go and tell him to find what he wants and when he picks things up, I have him put them in the cart.  This has worked really well - he's always happy and we know he's getting things he's interested in playing with.  Which is much better than trying to guess like I used to.

Which just made me think of yet another post I can write...!

Postscript to the postscript coming soon :)