Friday, February 20, 2015

Lego Words

By Philip

i play with
lots of words
like legos.
i am a collector.
i find words

(dedicated to TS)

LD writes:
Hello, I am a mother of four children. Two of them have autism. My oldest son M is verbal. My younger son J is non verbal. I have just realized that he can communicate to me via writing on a slanted whiteboard. I have to give him pressure on the back of his hand. He has a device to communicate, but he kept wiping out his program. When I asked why he doesn't like his device, he shared that it is too limited! It's tough to say things with. After communicating to him via writing I could see that the content of his sentences were much more complex than what was on his device. We are planning on going to Syracuse University to have J assessed in March. My other son M was actually writing in cursive when I did this same approach with him. I always believed that both boys were smart, but the things they are communicating are quite something! Could you explain some of this to me?

To LD, 
I am happy you are going to Syracuse.  People there are pulling for you to succeed. I used to have an ordeal having to put my thoughts in pictures.  Pictures are inadequate to me for expressing myself.  Tons more meanings can be formed with letters.  I play with letters in my mind all the time.  They are the building blocks of words.  Words build ideas and stories.  Stories make people's lives.  I am coming to spelling out of desperation to be quiet no more. 

Lisa's note: I noticed at an early age that Philip could recognize his letters well and liked to play with flashcards with the words on them as well as alphabet puzzles and foam letters.  Looking back I can see why he has had the ability to self-teach himself to read, but at the time I had no idea.  I always thought he was a thinker in pictures, as people told me it was the way most Autistic people thought.  Philip has since told me he does not think in pictures, but in words.  Throughout the years, Philip has tried PECS, GoTalk, and Alt-Chat.  They all seemed very promising, but he did not use them for more than simple requests or unless he was rotely taught to navigate it in such a way to answer a question.  I believe these programs have a place for some people, but it was not the right fit for Philip, whose inner language skills were way above and beyond what he could express with it.  I have tried to illustrate the deficiencies of purely picture programs with others by handing Philip's device to them and asking them how they would conduct an IEP (education planning meeting) just using pictures programmed on the device.  It's impossible and very frustrating for the user.  My experience has been that methods using open language through spelling offer the most freeing form of communication and self-expression to those whose speech is absent or unreliable (the words spoken are not the words intended).  I have noticed that many times a parent discovers this on their own, as "necessity is the mother of invention."  In India, Soma Mukhopadhyay would not listen to experts telling her her son could not learn.  Her persistence in making sure her son Tito would be educated and be able to communicate, lead her to develop a system which has proven to work with thousands of other nonverbal and limited-verbal people: Rapid Prompting Method (RPM).  Separately, another mother in Japan discovered how to help her son Naoki Higashida to point to letters on an alphabet grid to communicate.  He later wrote an international best seller using the letter grid, called "The Reason I Jump."  Still before these methods, Rosemary Crossley in Australia, worked in an institution where those with the severest disabilities were basically left to die.  She discovered that applying backward resistance to a person's hand (eventually to be faded to elbow and shoulder), could provide stability and sensory feedback to allow a person to intentionally point to objects and letters to communicate.  Her method came to be known as Facilitated Communication (FC).  Although these methods are different in practice, they all make use of letters and words as building blocks to open communication.  They also begin with the presumption that anyone can learn and  contribute, and has the right to be fully respected and included in society.             

Philip, age 3


  1. I have started w E to do a hybrid of the two. .. if I don't know where a word is or it's not there I model to go to letter screen and type it out. I think that the speed of familiar words already formed plus typing might make communication faster but I'm not sure if switching between the two forms would actually be more difficult for him. If Philip or any other autistic ppl could weigh in on what might be good or difficult about mixing them I'd love to hear it. He has shown ability to spell with help initiating and feedback on his hand or elbow

    1. At school, Philip uses the app Proloquo2go. It has both pictures and typing. His teachers say he uses the typing most, but uses the pictures for a few shortcuts. I don't have this app at home as it is very expensive so I haven't seen him do it. Apparently he mostly uses the pictures for requesting a break or using the bathroom. If you haven't already and you are able to do so, I would love for you to get some training on one or more of these methods (RPM or FC). It will go much more smoothly for you to have someone show you the ropes. I have learned both RPM and FC. I have seen success with both methods, but Philip has fallen more on the RPM side because he does not like physical support. RPM has other ways to help a person initiate his responses and give sensory feedback. The website for RPM is The site to visit to learn FC is

  2. Love, this, Philip! And to the mom, LD -- your experience with your son was exactly how we discovered that my son could read and write. When I read Ido Kedar's book, I learned that his mom also had a similar discovery. I am always amazed that what seemed like a kind of miracle (meaning that it was so much by chance that we had this insight) has happened in the same way to others. It makes me frustrated, too. How many others are out there waiting. ...

  3. idos book and page were also the catalyst to move from my 3 yo seems to have a lot of seeming to read coincidences bc 3yo can't read. well maybe he really can? Accounts of ido and philip at a young age are eerily familiar to how e was and is. .. it's in there just gotta figure out how to get it out so others can see. .. we are blessed with a wonderful SLP who sees it too will be so sad to lose her in Aug