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Showing posts with label skeptic. Show all posts
Showing posts with label skeptic. Show all posts

Thursday, May 9, 2013

Can Janey Read?

Janey's ABA instructor today brought up a topic which is something I wonder about now and then.  Can Janey read?  It seems unlikely.  She doesn't know her letters consistently, at least that she ever lets us know, she doesn't speak in full sentences for the most part, and any testing that has been done on her in terms of IQ or functioning level has put her in the severely intellectually disabled range.  But sometimes, there are tantalizing little hints that she might be able to read, at least some.  

Mr. Ken, the ABA instructor, told me about a program on the iPad Janey was using the other day, one that asked to identify objects both with spoken instructions and words on the screen.  He said the sound was turned down, but Janey was getting the answers right.  As we talked, she jumped on the iPad and went to a program which asked her to pick which of 4 scoops of ice cream was the vanilla scoop, again, without sound, and she picked correctly immediately.  Yesterday, one of her classroom teachers wrote that when they spelled out "C-O-O-K-I-E", Janey understood and said "Do you want a cookie?", meaning, of course, that she wanted a cookie.  And over the past year, we've seen little hints of reading, like Janey knowing the difference between videos that were identical except for the name of the video, like Disney sing-a-longs.

If you read all that, you might be thinking "well, it certainly sounds like she can read at least some.  Why does her mother sound so doubtful?"  I think there's a few reasons.  I am always VERY cautious about thinking Janey can do things that she can't.  I want to be sure before I believe.  That is my nature, I guess.  I'm skeptical.  Also, I know that our minds are primed to remember the good guesses and not the bad ones.  We remember all the times Janey seemed to be reading, and not the times she didn't have a clue what she was seeing.  And Janey is not hugely visual.  I think most of her learning is auditory, which would not make her someone, like a lot of kids with autism, that is cued into written words.  And there's her overall level of functioning.  Reading would be a huge step, like a child who had never sat up suddenly running.

But I know it's possible.  I know reading works in mysterious ways.  I have no idea how I learned to read, at 5.  I didn't learn via phonics.  Suddenly, I knew what the words said.  I still don't know how I read.  I do it automatically, and very, very fast---faster than anyone I know.  Janey might be a look-see reader like me.  She might have skipped steps along the way.  And in some ways, reading might be easier than talking for her.  It leaves out the social step, of having to communicate with another person.  You can read straight into your mind.  That also would make it harder to know for sure if she is reading.  Janey would not be inclined to want to impress us with her skills.  She has no desire to please anyone with what she can do.  If we figure out she can read, it might not actually change much, as I am quite sure she won't do it on command.  After all, she can also talk, but her talking is not really communicative, most of time.

With all that being said, I'd be thrilled if Janey somehow did learn to read.  More than almost anything, I can't imagine life without reading.  I read constantly, and I have since that mysterious day at 5 that I somehow started reading.  Reading is magical.  It's a dream I've had for Janey that I barely could let myself hope for.  And I still don't think it's going to completely come true, but even having it be a distant possibility is wonderful to dream of.

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.