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Portia Iverson (CAN)     "TITLE: What's Working for Tito and Others to Communicate -- Portia Iverson (CAN)."

Tuesday,  February 11th at 7 p.m. (Eastern), Note portions of the text have been edited for spelling and grammatical errors, while other text with errors was left in tact in the context of the chat.


Rebecca {public msg} Hello and Welcome to our talkAutism Specialty Chat. If you have a question for our Host Speaker's, "What's Working for Tito and Others to Communicate -- Portia Iverson (CAN)." Just type a "?" in the room. The names will be taken in order received. Hold your questions until you are cued by the Moderator. Also, Please keep chit chat down to a minimal. Feel free to speak up when The Host addresses your question, and say, "Thanks" when you are satisfied so that Moderator knows to move on to the next person. Thank You and enjoy your stay!

Ron {public msg} thanks for doing this tonight, Portia!
Ron {public msg} schools (sawtelle down here ) was really receptive to the co-fundraising approach - brilliant.
Tristatecan {public msg} Many schools really stepping up.
Bytress {public msg} Portia, I am glad for your persistence and dedication.
Rebecca {action: Portia} applauds Portia fervently.
Ron {public msg} same here!
Rebecca {public msg} Portia would you like to begin with a brief promo or bio.
Mommyo {public msg} ?
Abhoyjit {public msg} ?
Pteri {public msg} ?
Sunnie {public msg} "?"
Rebecca {public msg} Sure Portia.
Ron {public msg} how about what you been doing with rpm, and tito.
Bytress {public msg} ?
Portia {public msg} Okay, my husband Jon and I started Cure Autism Now 7 years ago when our son Dov was Dxed w autism and we saw little research was going on. I met Soma and Tito about 2 yrs ago at a CAN conference promoting innovative technology for autism.
Moderator {public msg} Portia ready for questions now?
Portia {public msg} Okay re RPM and Tito - I heard about Tito at a conference about 3 years ago. I heard that he was an 11 yr old boy w severe autism and from his behavior he appeared retarded, however, he was intact cognitively and I immediately thought we could learn so.
Portia {public msg} ....so much about autism from him. He visited neuroscientists around the country and it lead to a lot of very interesting research which is starting to uncover some of the underlying causes of autistic behaviors.
Portia {public msg} I can take questions any time. ---
Moderator {public msg} Mommyo you have a question.
Mommyo {public msg} Do Tito & Dov. get confused with receptive language? Especially if it is spoken so fast? How do you know if they are understanding everything?
Portia {public msg} they have excellent receptive language - above average - but unless they could type, you would not be able to know that.
Smittyjwac {public msg} ?
Mommyo {public msg} My son gets confused with verbal language.
Mommyo {public msg} But I believe he understands almost everything.
Portia {public msg} I/We only know they understand if they have a means to show it. -
Mommyo {public msg} My son types well, but still can not answer questions that I ask him.
Mommyo {public msg} Do you have a suggestion to help us.
Portia {public msg} What does he type?
Mommyo {public msg} He loves to spell anything about Thomas the tank engine.
Mommyo {public msg} And even does internet searches.
Portia {public msg} Does he also talk, and if so does he talk about T the train?
Onegary {public msg} ?
Mommyo {public msg} He does talk but not well.
Mommyo {public msg} He can put a sentence together.
Mommyo {public msg} but allot of it gets jumbled.
Portia {public msg} I am not sure, I have not seen a kid do verbal stims with typing, but I am sure it happens, if you'd like I will ask Soma what she thinks and e-mail you later.
Mommyo {public msg} Thanks I would love it.
Mommyo {public msg} Thanks again.
Moderator {public msg} Abhoyjit you are next.
Abhoyjit {public msg} Hi Portia.... good to talk with you again. (1) You'd indicated that a "manual" would be written sometime shortly; could you give us an update? (2) Any thoughts on kids who are already somewhat (but not completely) verbal or can communicate some other means already, e.g., write/type?
Portia {public msg} You are welcome, just send me your address later.
Mommyo {public msg} Ok
elizabeth5 {enters}
Portia {public msg} Hi Abhoyjit, Soma and I have been working on a manual for RPM. We are getting input from education and psychology experts as we go, and we hope to have a "beta test" version on the web by June first for people to try and to give us feed back before public.
Ron {public msg} ?
Portia {public msg} ...Before publication.
Abhoyjit {public msg} Sign me up... anything to add to (2) that you haven't already mentioned in the discussion with.
Mommyo{public msg}?
Tristatecan {public msg} "?"
Portia {public msg} As far as verbal VS nonverbal kids, I recently saw Soma work w a verbal teenager whose verbal stimming (talks about Disney movies nonstop) gets in the way of his intentional communication.
Portia {public msg} He was very anxious at first but was able to use the letter board to communicate his thoughts (rather than verbal stimming) successfully. So, yes, I think it can help verbal kids too.
Moderator {public msg} Pteri you have a question.
Abhoyjit {public msg} Ok thanks
Pteri {public msg} Hi Portia, How is rapid prompt method similar and different from intensive behavioral intervention?
Kristy {public msg} ?
Portia {public msg} There are similarities - ABA can be a form of rapid prompting, refocusing the child moment to moment, but often the prompting is not as rapid.
Portia {public msg} Is that a speech and language term?
Pteri{public msg} Let's just say it's more like what you would see in a direct instruction program "to become fluent" in the task at hand.
Pteri {public msg} It's very rapid prompting with lots of reinforcement. Basically ABA based.
Portia {public msg} I can't say as I am not familiar.
Pteri {public msg} That's ok. Thank you so much.
Moderator {public msg} Sunnie you have a question.
Sunnie {public msg} Are either or Tito on medication? If so, how does this affect their speech?
Portia {public msg} RPM does not use 're-enforcers'. Soma finds that the kids are reinforced by being recognized for what they know, more than anything.
Sunnie {public msg} Have either of them ever had any problems with aggression?
Portia {public msg} Okay re medication, tito is on Depekote which helps with his big mood swings and aggression, also resperidol (sp?).
Portia {public msg} Dov has been on Depakote for many years and it helps stabilize his moods.
Sunnie {public msg} Depakote is an anti-seizure med., right?
Portia {public msg} Yes, both boys have problems with aggression. RPM is not a cure for autism (unfortunately). However, it is great for the autistic person to be able to communicate.
Sunnie {public msg} How do you feel about the use of sign language for a younger child?
Portia {public msg} If someone had asked me 2 years ago, whether my son would still be autistic if he was cognitively intact and could communicate - i would have said no, he would not be autistic if that were true.
Charfc {public msg} Oh, I am so glad to be here!!!
Sunnie {public msg} Are you familiar with Gail Gillingham?
Portia {public msg} But - clearly he still is very autistic. Aggression and frustration went down extensively, But his behavioral repertoire is still made up 99% of uninhibited impulses which he cannot control. tito is the same.
Abhoyjit {action} . o O ( ? )
Sunnie {public msg} "Thanks"
Charfc {public msg} ?
Portia {public msg} Yes I know Gail, and I admire her work.
Moderator {public msg} I8dpie has the next question.
Sunnie {public msg} She says no autistic person she has ever encountered is retarded, btw.
Sunnie {public msg} Sorry..
Portia {public msg} I think Soma would agree with that statement.
Sunnie {public msg} Thank you very much!
Portia {public msg} Sunnie: re sign language - anything that helps...
I8dpie {public msg} If a child (age 9) has done very poorly in discrete trial type programs, could RPM still benefit this child?
Portia {public msg} We think there are two major subgroups: auditory adaptors and visual adaptors. Sensory overload is described by all autistics who i can communicate as the hallmark of their early life.
Portia {public msg} And so it seems that the Titos stopped looking and relied primarily on hearing to try to make sense of this overloaded work, while the Temples used their vision and auditory processing went by the way side.
Portia {public msg} Counter intuitively, Tito has excellent "language", but cannot speak and has very poor motor ability. While temple can talk and has poor auditory processing yet better motor skills.
Portia {public msg} We studied them at UCSF side by side and the two types played out. A paper will be published. Using pictures with an 'auditory' type of kid won't help.
Tbaaernst {public msg} How do you know which way to go?
Portia {public msg} Also, keep in mind that written words are actually processed auditory as opposed to being visual.
qim {public msg} ?
Portia {public msg} You can get a clue, if your child loves TV and video they may be visual dominant. if they seem not to pay attention to anything visually but rely more on tactile ie put stuff in their mouth, feel surfaces, etc - they may be auditory learners.
Portia {public msg} Soma has been studying the tactile and kinesthetic components and we hope to be able to present a matrix for parents to use to help determine their child's learning style.
Sunnie {public msg} "?"
Moderator {public msg} Smitty you have the next question.
Smittyjwac {public msg} There are various Computer aid programs for autistics people, however, not everyone program is suitable for each individual. I'm curious as to what assessment you prefer to implement--PEP-R, or LPAD--to test for their appropriate tech-aid? Furthermore, I read in an article that some tech-aid are personally written individuals. Is the process expensive and time consuming?
Portia {public msg} This will be so important to get the best educational approaches to these kids and help them succeed. i think most auditory learners like Tito and Dona re written off as retarded when they don't talk by age 3 or 4.
Portia {public msg} The technology currently available is poor - not flexible and expensive.
Moderator {public msg} Onegary has the next question.
Onegary {public msg} My son is able to ask for anything he wants, sings songs and will repeat, but we can't develop any conversational speech- what is the next step- and what is the difference between PRM and VB
bunky {public msg} Hi--Jeff Sell here--I'm just signing in for my wife Paula--she'll be here in 5 seconds!!
Smittyjwac {public msg} Thanks you.
Portia {public msg} CAN has commissioned a group at Stanford (AARTI) to use available 'Palm' type technology to develop a tablet that is tough and can be adapted in many ways to fit the child's needs - in other words to fit their sensory dominant mode.
Portia {public msg} What is VB?
Onegary {public msg} Verbal behavior.
Onegary {public msg} Dr. Vince Carbone is large supporter of same
Portia {public msg} Can't answer as I am not familiar with implications of VB. As far as conversation, we have developed some strategies for nonverbal kids to have peer interaction - could probably be adapted for verbal kids too.
Moderator {public msg} Ron has the next question
Ron {public msg} Hi Portia- thanks for doing the chat. this is great. Any ideas on how we can get RPM trialed in NJ schools by this coming September?
Portia {public msg} Please send me Carbone's papers if you have them, I'd like to know more.
Ron {public msg} Carbone's presentation is on TalkAutism's Virtual Speaker.
Onegary {public msg} I will get them out to you, I heard it is very similar program.
Macko {public msg} ?
Portia {public msg} No, but maybe you and some others can help strategize. We are working on the manual as a foundation, and then will develop workshops to teach teachers, aides and parents. Soma is doing an in training for a week at a school up north and we'll learn a lot .
Ron {public msg} can we part of that training to bring techniques back to NJ?
Moderator {public msg} Kristy has the next question
Kristy {public msg} Hi. My son is 5 & nonverbal. How do I start RMP? How could you tell that Dov was ready?
Portia {public msg} I just want to say thanks to all the parents for your ongoing support of CAN - we couldn't keep it up without all of you.
Pteri {public msg} ?
Portia {public msg} I did not know Dov was ready at all. It was a shock to discover he could read and that he was near age appropriate academically. He went from pre-K to 4th grade curriculum in one school year, on his IEP goals.
Kristy {public msg} My son ignores us when we try to get him to read with us.
Tbaaernst {public msg} You must have had some signs to tell you though Portia?
Portia {public msg} Start any kid at any age - assume they have been learning all along and are quite intelligent. Start with simple 2 choices, like yes and no, keep moving your stimuli fast and keep talking - it doesn't matter what you say, just keep alerting the system rep.
Charfc {public msg} Can you talk a little about the use of facilitation to get both Tito and Dov started with their communication? (And I totally agree that no one I have met who has autism is retarded). I love what you said about the inability to do intentional behaviors.
Kristy {public msg} Thanks Portia!
Portia {public msg} ...Repeatedly. C'mon, good, go, go...etc. Give the child a prod on the shoulder or arm to alert the body sense and motor system. it is very labor intensive!
Rebecca {public msg} Thanks so much for your time Portia!! AND all you do in support of Autism!!!
Moderator {action} . o O ( I am so sorry for all those that we did not get to. This room is open 24/7 please feel free to stay and discuss anything you would all like. )
Ron {public msg} We'd love to have you on again Portia. Thanks so much for what you and CAN do for the autism community.
Portia {public msg} That is a complicated question - first I would concentrate on getting her to communicate what she really means using the skills she has already - branch out to auditory after that.
Mommyo {public msg} Thank you so much Portia!!! I can't wait for the manual!
Tristatecan {public msg} Remember " A Knight To Fight Autism" March 23 at Medieval Times in NJ 877-879-2873 for info or check the CAN web site under NJ Chapter.
Rebecca {action} We Welcome you to come back again Portia...
Mommyo {public msg} Please do come back Portia!
Bytress {public msg} Cheers! Thanks.
Qim {public msg} Thanks Portia and Dov for the work you are doing. I got here late, did Portia say anything to this question..."What's the difference between RPM and FC?"
Sunnie {public msg} Thank you, Portia.
Ron {public msg} Thank you Moderator and Rebecca. Great job. Everybody tell your friends who couldn't make it that the transcript for this will be posted in about two weeks.
Portia {public msg} Thank to all of you, hang in there. the science is looking better and better - I hope we can celebrate with some breakthroughs in the next year or two. Best wishers to all of you. Thanks again for your support of CAN.
Moderator {public msg} A transcript will be available of this chat
Pteri {public msg} Anyone know who I can call to set up an appointment to visit a classroom with this set up? Willing to travel..
Charfc {public msg} Sunnie, I have had some success with visual kids using FC to type conversationally at the computer.
Rebecca {public msg} Portia's transcript will be posted very soon!!
Moderator {action} . o O ( please stay and help each other with any questions and answers, most of us do know more about our kids then anyone, and are the best source of support. )
Portia {public msg} I am signing off - have to put my kids to bed. Thanks and best wishes to you all. -Portia


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