Archived | Cure Autism Now: What’s Working For Tito And Others To Communicate Chat With Portia Iverson | Circa February 11, 2003 #NotAnAutisticAlly #AutisticHistory

Screenshot of page with transcript of Portia Iverson co-founder of Cure Autism Now (CAN) in 2003. Full text below.

[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]

Portia Iverson (CAN)
TITLE: What’s Working for Tito and Others to Communicate

The following transcript is of a Specialty Chat hosted on chat area. They are brought to our visitors as a convenience for those that missed the chat.

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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!!

More With Portia Iverson #NotAnAutisticAlly


Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid. 

ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.

The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t workIn study after repeated study: ABA (conversion therapy) doesn’t work. 

What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.

The ‘cure’ for Autistics not born yet is the prevention of birth. 

The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome. 

This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.

Fact: You can’t cure Autistics from being Autistic.

Fact: You can’t recover an Autistic from being Autistic.

Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.

[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]

Fact: Vaccines Do Not Cause Autism.

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