Sunday, June 7, 2015


     I am hot and heavy into autism research this summer.  I am researching a newer theory that underlies how language is developed and utilized called Relational Frame Theory (RFT).  I wont go into it in this post but it is great and mind blowing stuff, at least for a theory and psychology geek like me.  It underpins all language, and techniques have been developed to remediate both mental health issues like anxiety and self-hatred, and also developmental disorders such as autism.  Not by the same teams, of course, but progress is being made on all fronts.  I got myself several expensive and up to date texts on RFT, the mental health ACT, and how RFT and other similar research is being applied to autism and other developmental disabilities. 
     The great thing is I am finding ways to apply all of this across my lives.  My work life, my personal life, and my mom-to-Alex life.  The most exciting for me is the Alex and autism progress.  I have identified some deficit areas that have been staring us in the face for years, but were not specifically identified or highlighted.  The thing about autism is that there are 1,000 deficits.  So many ways we are behind or different.  Intermixed are many strengths and areas we are gaining ground.  What to focus on?  This is the $64,000 question.  We have gone with many different answers and areas, but have tried to always keep the pivotal areas from PRT in mind.  Well, we may have found an new pivotal area.  Or and old one, depending on who you talk to and how they are trained.
     Tacts and mands.  Tacts and mands are staples of the ABA world.  Sorry about the jargon, but I just have to throw it out there.  Please hang in for a minute.  In my basic understanding, mands are the same as "demands" and Alex and other kiddos on the spectrum are usually good at these.  He has been able to demand things since we were blessed to have him start talking (after significant delays).  "Milk" was possibly his first mand.  Tacts have always been harder for him.  To tact is to describe something.  This is what 3 and 4 year olds do, all-day-long.  This is what Alex did not do then, and has been limited with even to this day.  This I knew.  I also knew that he had issues with both "receptive" and "expressive" language, what he takes in and what he puts out.  And I knew those two didn't match.  We have been told his receptive is better than his expressive, basically that he listens better than he speaks.  I didn't worry too much about it, figuring that he is therefor comprehending well and the rest will catch up.  What I didn't realize is that those two things, at least for Alex right now, are on totally different tracks, and are not necessarily catching up or tying together on their own.  What I didn't realize was that he had a serious resistance to tacting out loud, labeling the things he knows Out Loud.  And this had kept his speech at a remedial level.  He knows it, but that is not good enough if he does not/can not/will not express it.
    By some Alex has been labeled resistant.  Defiant.  He had a speech teacher that wrote him off as a discipline case because he would not conform to her activities and demands.  Most likely related to tacting.  She had no idea how to motivate him, and threw in the towel.  I am using some conjecture here, but suspect I am not far off.  That person was awhile ago, years back, but it still burns.  She did not look into his speech deficits far enough to see the tact and mand issue, or to separate out what he could do (listen) from what pathways had not been worn in yet (express).  And she probably started at too high a level, and demanded too much.  So he shut down.  I get that.  I have done that too, many times.  But I never gave up for long.
     So, I am learning.  We started tact training a few days ago and it is going beautifully.  Turns out he will work real hard for Cheetos.  And a simple, yet fun, labeling program at home is already paying dividends in his ability to tact, and therefore describe the world.  We will keep going with that, and expand on through the summer.  Today I discovered a new word I should have known.  A word that speech teacher should have picked up on and taught us.  A word no one has told us about but is a key feature of our boys language.  Palilalia.  Let me back up and say "echolalia".  We were taught echolalia years and years ago, and have taught many the term.  It means to echo what is heard, either immediately, or from the past.  It is a key feature of autism and ASD that can be very confusing, because kiddos will use whole phrases that make no sense in current context.  Either phrases heard from parents, or in Alex and many others case, phrases from movies, commercials, or radio.  He has this one bad.  Even though he has limited exposure, movies and shows, their words stick like glue, and he will pull them out at very odd times.  Saying things that are confusing or that appear to be nonsensical.   It is an indicator that he is not using enough original language, not making or using those connections.  And we understand it is hard for him, so we encourage novel language.  But palilalia is a new one on me.
     Palilalia means to repeat phrases, either out loud or under one's breath.   And not just repeat once, but at least twice, and sometimes up to five times.  Or more.  I am not sure, yet.  I have never been taught about it so never tracked it.  But I will now.  I am already looking up remediation strategies.  And understanding it as another indicator of being stuck.  Stuck in non-functional language, and therefore not moving forward with functional language.  A red flag.  But also a way to track progress as we move forward.
     I am glad I know about it now.  I will shortly let go of not having known about it before.  I will add it to the list of "things I wish I knew and may some day teach", and move forward.  Cuz that is what it is REALLY all about.
     So, I am looking forward to a great summer.  Tacting is not the only front we are making progress on.  We have continued to bike.  That is super fun.  Alex is determined and his skills are rising.  He learned to roller skate last week and really liked it, even as he was going 1/2 mile an hour and falling quite a bit.  He is looking forward to travel and visiting family.  We have more soccer on the ticket.  Camping is in the plan, boating too.  Plus many play dates and adventure.  Last school year was great, and I think if this language program pays off he will return with a much better relationship with the world.  It is an exciting and inspiring time.  As more discoveries are made I will try to get the word out.  Thanks for reading!

   Peace Out Friends


marian said...

Thanks for posting this on facebook, Beth. Super interesting to me! I watched the movie "The Aviator" last night, about Howard Hughes. He did this palilalia thing with sentences, which was I'm sure related to his OCD, but maybe autism too, who knows. It struck me because I'd never seen it or heard of it before. And now today here is your blog.

Glad to know you are writing here... I'll be following!

Kathy said...

I will say it again.... Alex is SO blessed to have you as his mom!!! Love you all XOXOXO