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Tuesday, January 29, 2013

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.


Sophie's Trains said...

I had to reply because my husband and I have been talking about this very thing A LOT lately. A lot. We are skeptics like you. I have to say I read a very famous recent memoir (won't mention which one) and came away from it with more doubt than inspiration. That article you have linked has received a lot of flack from people who are not quite as skeptic, did you know? And yet I also found it informative, and I did find myself agreeing with it.
But there was a lot of drama over it. I wasn't brave enough to adress the topic on my blog (yet) but I will one day.
Thanks for being brave! I'm sure there are more of us feeling this way but afraid to go against the status quo

mknecht24 said...

Fellow skeptic. I don't think every autistic kid is locked inside waiting for a miracle. I think the real problem is the idea of an autism spectrum. I think we are dealing with a variety of illnesses with similar behaviors. It is frustrating and maddening to be constantly berated for my failure to cure Lindsey. So tired.

Suzanne said...

So great to see both your comments. It took me about two weeks to work up the courage to write this particular entry, so I'm not as brave as I sound! I hadn't read the reaction to that article, but I'm going to look for it. I figured it was probably not hugely well liked in a lot of circles! I agree very much with you, Michelle, about autism having lots of causes, and therefore, even if something it does get "cured", which I am skeptical about too, that is no reason to say that anyone else could do the same thing with their own child. I don't want people thinking if I just tried a little, I could "unlock" Janey. Don't think think that if I could do that, I'd do anything to make it happen, as you both would, I know? Thanks and love.

Sakurafleur said...

How do they manage to get through college though if they aren't communicating by themselves? Surely their aide isn't the one doing all of their work for them? That would be exhausting. A lot of these kids type on the Ipad or on a computer now after they used the letter board. They can do it independently.

Suzanne said...

I'm thinking of people that don't type on their own. I know a lot of people with autism communicate in ways other than speaking, or do so more easily than speaking.

Sakurafleur said...

I think that guy I mentioned, Ido Kedar, started off with Facilitated Communication. He worked with Soma doing the Rapid Prompt Method and is now independently typing.

But as for being a skeptic - I probably one of the biggest... ever since I found out Father Christmas! I'm an Atheist (such a shame - I'd make a good Christian), and since Olivia's diagnosis, I don't even allow myself to dream about a future!