Monday, March 25, 2013

Sometimes It Can Be Hard to Believe

Maybe if I tell you a little about two young people I know who are quite new to typing I can help set the stage for explaining how hard it can be to believe this is all for real - and also why I find it possible to believe all of it - and even more.

I have been doing this for over 20 years now, so I tend to forget how we all started out.  Then I run into the inevitable challenges to what might be happening here, and it all comes rushing back.  Let's talk first about M, a young woman nearing the end of her time in high school.  She's never really had academic programming, mostly because she seemed to have so many other needs ("functional life skills," "daily living skills" and of course behavioral programming) and her IQ score most probably indicated limited educational potential.  Oh, and she has very limited speech.  All of this is very typical of the young people I meet.

What is NOT typical at all is that she has excellent fine motor abilities - she writes, she draws, she ties her shoes and zips her jacket - and she can navigate even an unfamiliar computer with lightning speed.  She loves to type, but if no one is providing some level of physical support (resistance), her typing consists of what would be called echolalia if she were speaking.  It's the same with her writing - beautiful, neat handwriting - but all of it (and there are pages and pages of it!) a rehashing of what we have come to call "movie talk." 

She eagerly enters my office and sits down at the computer, ready to go.  I have my hand ready and most of the time she willingly takes the offer.  When I ask about the movie talk, she tells me it is NOT an effort to communicate (although I do believe at times she has attempted to use it that way) and she needs my help to get her own thoughts and ideas out.  With my support, her typing is much slower, but we are able to have a back-and-forth conversation.  I can either ask a question orally or type it and have her read it, she pauses briefly and then types her response.  As she types, she is carefully watching the computer screen and quickly pulls her hand away from mine to correct any error that may appear.

Let me repeat.  If she spots a typo, she INDEPENDENTLY and very quickly moves the cursor to that spot, hits the delete button and types the correct letter(s).  Then she takes my hand once again and we can continue our conversation.

Then there is S, a young boy (also non-speaking) who started out with all sorts of resistant behavior - running around the room, grabbing my glasses, trying to pull hair or pinch, scratch, etc.  This also has been a common reaction among many of the young kids I have worked with.  It's been enough to cause many others to give up on efforts to help kids learn to type - after all, it sure looks like they have no interest; maybe later in life - for now we'll continue with what we have been doing.  But when I was able to finally "corral" S into a position where he felt sufficiently supported,  while also talking to him calmly to let him know I believed in his abilities and intelligence, he allowed me to take his hand and he started answering questions from his mom and from me.    Just the other day, S seemed to put all of this together and realize he could use my support by his own choice and for his own benefit.  We were no longer struggling; he wasn't just conforming to what adults were asking of him; he was initiating conversation.  I had been holding his hand as his mom asked questions.  Then she and I started talking to each other.  S took my hand and added his own comments to what we were saying.

Again, I repeat.  He took my hand and initiated a comment of his own that fit right in with what was being discussed.

What M and S both type - with support - doesn't match well at all with the rest of what we see when we look at them.  They type in full sentences, with almost perfect spelling.  They sometimes type deep thoughts and feelings that seem wise beyond their years.  With little or no academic instruction how is this possible?  Believe me, I really can and do understand why it's all so hard to accept.

I can go way back in my memory bank for other examples of just what has caused me to become a believer.  I really DID start out with all sorts of skepticism.  I think we all do.  As much as we might want to believe these kids who don't talk might actually have lots to say, there is massive resistance to actually allowing oneself to "go there!" 

What has NOT worked in my experience would be situations where a child or young adult was put on the spot and asked to "perform."  For all sorts of reasons, these young people do not like being put to the test, and they can sense a skeptic no matter how well-concealed.

It really isn't often that one of them types something that is totally spontaneous and revealing of something I don't already know.  Very rare, yes, but it DOES happen.  I think of A from my early years of using Facilitated Communication.  He could talk, and in fact talked a lot, but always on topics of his choosing and never to express feelings.  One day his behavior was totally out of control, and I turned to typing to see if we could get at the problem.   He typed that his parents had been arguing, he was worried they might be considering divorce, and that he might be sent to a foster home.  I made an appointment for a home visit, where he willingly (almost eagerly) typed the same message to his mother, who was visibly surprised and then admitted there had been some tension, along with late night discussions when they thought A was asleep. 

A classroom game we often played also helped to validate what we were doing.  Starting with a set of ten word cards - picture on one side, printed word on the other - one student would leave the room with my para-professional and together they would pick one card.  That student would then return to the room and use my support to type the word, while I spelled it aloud and the others who could speak would try to guess what was being spelled.  We consistently scored right at 80% with this because there were five students most of the time, and J invariable chose deliberately to spell an entirely different word.  There's one in every crowd - and J was definitely our class comedian!    Various forms of "message passing" have been used in structured studies to attempt to validate the method, often with poor results. Again, I believe that is mostly due to the anxiety produced by any testing situation.  When presented as a game - in a comfortable, relaxed, even fun, setting - results are much better.

I have worked with others like M, who make their own corrections while typing.  And I have worked with some who can give me a nod or smile or point to YES to make sure I am understanding what they are telling us.  I have seen behavior deteriorate when we do not make the effort to understand what they are experiencing and perhaps most important of all, we have all seen dramatic improvement in overall attitude and behavior when these amazing young people find a way to communicate what they need/want/have to say!

But we continue to deal with skepticism and even resistance among family members, school staff, and others.  It seems too good to be true, too hard to believe - for so many people and so many reasons.  Attitudes that are deeply entrenched are very slow to change, and for far too long we have made dangerous assumptions about people with limited (or no) ability to speak.

We may be approaching some sort of tipping point and it can't come a moment too soon for all who have been so terribly misunderstood and underestimated.  What danger could it possibly do to give them the benefit of the doubt and accept that this might in fact be true?

5 comments:

  1. Char, this is WONDERFUL, as are the previous blogs. THANK you for sharing your story which is so much part of the bigger story of the autism gifts. Lyrica's FC was tested in a court case by simple observation by a PhD University researcher. He counted the number of times Lyrica hit the key guard or a wrong letter on the computer and corrected her response without for that instant having any physical contact with my hand. We won the case and believe it was the first due process case based on FC in the US. I think there are so many things we can learn from these typers...ways to support them better and ways to understand the experience of autism better (and hence be more supportive to all who live in this world.) Thank you for your service, for believing, AND never giving up!

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  2. And a very special thank you to Lyrica and Gayle for all you have done - and continue to do - to help us gain a better understanding of our purpose and path.

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  3. awesome, like a nonverbal teen student i had in an art class of mine, i noticed he painted beautifully , with both hands at the same time! He was so proficient , during a busy class i asked him to help a younger student finish a painting as class was ending and the youngster needed it done as a gift for his Mom. My autism student walked over, showed him what brushes to use etc. and told him "verbally" how to finish it. He used every word and tone that i had used to teach class in the past. This discovery of brilliance led to him becoming a teacher. (he could already read, type and use the computer)

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  4. Thank you so much for sharing this wonderful story. We miss so much when we don't pay attention, don't give them a chance!

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  5. I paint for museums and cannot paint with both hands or both at the same time. Much here for us all to learn www.katonart.com

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