Being a Skeptic

I wish I wasn't a skeptic.  But I am.  I don't take much at face value.  Once I got a big pile of Skeptic magazines at a thrift store and read through them all.  They depressed the heck out of me, but I couldn't stop reading.  The favorite phrase of skeptics is "extraordinary claims require extraordinary evidence", and I have to admit I do agree with that.  If you are telling me something that is hard to believe, I need very strong evidence to be convinced.  I wish I wasn't like that.  I wish I had more faith.  I wish I could believe more of what I hear without that voice in my head saying "I think there's more to this.  I'm not sure this is true.  I need to learn more about this before I accept it".  But I can't.

Lately, I am reading more and more about people with autism who are non-verbal or have very limited verbal abilities using typing to show that they have far more going on in their heads that anyone would have guessed.  Now, I do believe that Janey, and a lot of kids, have far more in their minds than they can express.  That is part of autism---that what a person with autism knows is not always easy to get at.  And I know that sometimes with Janey, she needs a hand over her hand to get her started in picking the right answer.  I also know it's EXTREMELY hard, when I do this, to keep from nearly unconsciously guiding her to the right answer.  Sometimes I'm almost sure I'm not, but then I realize I am.  Then I step back and make sure what I am doing is just a very light touch to get her started.  I have started closing my eyes when doing this, to keep from being able to guide her.  Or I put up something between me and the screen she is seeing, to make sure I don't guide her.  And when I do this, she gets a lot less answers right.  I don't EVER want to delude myself into thinking Janey can do things she can't.  This is because that does her a HUGE disservice.  I value Janey for who she is, not who I wish she was.  

I know this is a very touchy area.  And I know that some people with autism type independently, and I know some people start out with what is called Facilitated Communication (read about it here) and then move on to typing on their own.  And I think it's possible that some people communicating through FC (as it's nicknamed) are truly typing their own thoughts.  But I am skeptical.  Saying I am skeptical means something hugely different than saying I don't believe people.  It means I want proof.  I think in this particular situation, proof is something hugely important.  It makes a huge difference in Janey's life.  If people with autism that appear to be even lower functioning than Janey are able to go to college and write poetry and so on using FC, then I need to rearrange my thinking about Janey.  But I am not going to do that on faith, and the history of proving FC is true so far is pretty checkered.  

This article is what got me thinking---it has a lot of interesting information.  (see it here)

I don't ever want to say that I don't believe people.  And that is not what I am saying.  I am saying that I am a huge stakeholder in the task of finding out exactly what people with autism are capable of.  I don't just have an academic interest.  I have a heartfelt, extremely personal interest.  I don't wish to tell anyone else what to do, what to believe, what to think.  I would never want to do that.  My work, my life's task, is to let Janey be what she can be, what she can truly be, and to celebrate her for that.

A book that set me thinking

I just finished reading a book called "Reasonable People" by Ralph James Savarese. It's a memoir about his adopted son DJ, who is autistic and also went through much trauma in his early years before he was adopted at age 6. As often happens when I read a book about autism, it set me thinking. Their son learned to communicate using Facilitated Communication, which I had thought was pretty much totally debunked. It's when a parent or someone else holds a child's hand (or later on their arm or shoulder or so on) to help them control their movements, and the child types. I am quite convinced from all I read here that DJ was doing the typing, and that he was very bright. He didn't start FC until he'd had a very lot of reading taught to him, unlike some cases I've read where kids started doing it out of the blue, which makes it seem like it's someone else doing the typing. Some autistic people learn in time to type on their own. I still have a lot of skepticism about anything I read about autistic children or adults somehow being "unlocked" after having had so many thoughts over the years they have no way to convey. Maybe that's because it's too heartbreaking for me to think of. Is Janey understanding all we say, but can't let us know? I know that sometimes with the iPad, if I lightly hold her hand, she is able to do things she couldn't otherwise. I am quite sure I am not directing her hand. Her teacher told me she can write a "J" this way, and I've seen her do similar things. I just don't know.

The book also made me feel like a slacker, as so many books about autism do. The parents were endlessly devoted to DJ, who was very tough at times. The author was an "overthinker", as a friend and I call ourselves when we think about everything way beyond what most people do, and the author did address the fact that they had resources, money and time beyond what average people do. But still, they were far more hard working at getting DJ up to speed than I feel I am. I think part of it is I don't know what will work with Janey. If someone knew exactly what would help her most, I'd do it day and night. I really would. But I don't know, and I'm not totally convinced that anything would greatly speed up her progress. If I went with my gut, I'd feel that the most important thing for her is to be accepted by us, her parents. She is going to deal her whole life with a big world that will see her as odd at times, as unworthy of respect perhaps. I want her to have a happy childhood. I want her to have time to explore outside, to listen to music, to be silly. But I don't want her to be unhappy, and she is, too much of the time. Is this because she wants to communicate more than she can, and I'm not working hard enough to give her the tools? When I read about how other people approached autism, they always seem so confident they are on the right track. I am not like that.

Anyway, it was a very well written and thoughtful book, and I would recommend it. Any book that makes me think as much as it did is doing the job a book should do.