Your Opinion Requested: Are Non-Verbal People with Autism Intellectually Capable?

I have a son who speaks with an MT4, which is an Augmentative Communication Device. Before getting this computer, his communication was extremely lacking, resulting in limited sign language and gestures.

For any doubters out there, no one will know what it is like to hear “Mom, I love you.” coming from your child for the first time, when your child has finally recieved a method of communicating that he/she can relate with. One may think that all parents must wait for their child to talk to hear those words, but when you have to wait until the teen years because that’s when his communication system(s) started working for him, you really don’t know.

To us, a computer is a computer, nothing mroe than a machine that can do some pretty amazing things. To my son, a computer is a release….he can communicate his feelings, like “I’m ticked off! Leave me Alone!” or that he really liked a movie we just saw. My favourite is “I’ve been really good, can go Dairy Queen?” He doesn’t have to make facial contact while he is talking because while it rattles off what he wants to say, he’s busy working on the next thing that he wants to say, which again, opens a lot of windows for him because it takes that eye contact stress away. When he tells us he wants to go for a hike, or that he had a good/bad day at school, there is NOTHING fake about it…it’s real. And when he stood in front of 800 people for Rememberance Day and introduced the Last Post, there was was nothing fake about that either, nor about the tears running down countless of faces.

I also work with a child right now who needs arm support to be able to type. Although he hates it, and I have skeptics in the district who really don’t think he’s doing all the work himself, he and I both know that although my hand is there, it is his work that he is producing, whether it is saying something with his communication device or doing work on a computer. I’d be willing to be hooked up to a lie detector and state the same thing.

Hand over Hand does work for some (like most things, it works for some, not others), and at first the facilitator will be doing most of it. The key is to know when to start retreating, which for a lot of people is hard to do. However, when you feel the switch happening between the two of you, where the child starts taking over, the feeling is nothing short of pure magic.

As to the comment of “Are Non-Verbal People with Autism Intellectually Capable?” why wouldn’t they be Intellectually capable just because they may have Apraxia or some other speech impedement? What comes out/doesn’t come out of their mouths truly does not reflect what goes on inside. It’s just the outside world doesn’t know of too many other ways of recieving information, other than hearing what someone has to say with their ears. Being a real listener communication means you hear with your eyes, ears and other senses. It’s not easy to do, but once you get proficient with it, it’s amazing what you’ve missed out on. The real question should be “Are Verbal people Intellectually Capable of Listening?”

My 2 cents worth anyways.

Caroline

Completely anectodal (as well as predictable) on my part, but the sparkle in my non-verbal son’s eye tells me that he knows so much more than he can communicate to me at this point. I look at his inability to speak or use gestures as a form of paralysis … the paralysis of his communication system.

I definitely think non-verbal people with autism are intellectually capable. My opinion is that it’s just that the communication channel doesn’t always work properly and not the actual person. If anything, I think many autistic people are smarter than the average population.

Dave’s worry is very valid.

Between the media overhyping cases like Carly’s and extraordinary but false claims of facilitated communication and rapid prompting, we are creating a mythology that inside every person with autism is a kind of philosopher-poet, a hidden genius with fascinating things to say. We no longer allow people with autism the dignity of being who they really are. People with a serious disability who also have the potential to make tremendous gains with effective interventions. We now imagine them as something else. As almost magical beings. It is truly frightening to read, in Caroline’s comments, another apparent instance of the “Mommy, I love you” scam which we see done at facilitated communication meetings and workshops. Desperate parents hire facilitators who get their kids to say “Mommy, I love” on the first time out, or not too long after, then get offered consultations or training–for a cost. If it were anything else, we’d smell the scam a mile off. But the myth of the hidden genius allows us to believe that a child who has never spoken, read, or typed in his or her life can spell out whole sentences the very first time facilitation is used. No one will win any prizes for guessing that the facilitators do not also offer to do real, double-blind validations of the communication or recommend that validation be done periodically to ensure that facilitator control is not developing. No, the mantra is “don’t test.” The facilitators know that if testing were done, the parents would find what we always do when we test for facilitator control–that the facilitator is really doing the talking. If anyone had done any testing in Michigan, we wouldn’t be seeing another case of bizarre FC abuse allegations against another set of parents. That child supposedly typed sentences and did math on her very first time being facilitated. In reality, FC failed two in-court tests without single correct answer, and the typed allegations are so full of factual errors it is amazing anyone takes them seriously

You can not make a blanket statement that all non verbal autistic children are intellectually capable … or that they are not.

In Carly’s case your discussion is omitting any reference to the fact that Carly received years of ABA, Applied Behavior Analysis, intervention. Her parents have said that they are thankful they obtained ABA for Carly.

I agree with Doherty on this one. Even considering only non-verbal autistics there’s a spectrum with people of varying IQs and motor skills. ABA, floortime, occupational and speech therapy are very important to provide those individuals with the best tools so one day they’ll be able to express their thoughts and feelings, regardless of their complexity. I like when Jas reminds us that even if an autistic person is not some kind of genius trapped in silence, or has low IQ, he/she is still worthy of our utmost respect.

There have been a many who emerged through computer but these Autistics type on their own.

They did a study and proved it was mostly a scam but experts also found that even honest facilitators missed major words after they were able to teach the patient to type. So it really can’t be done long term without missing things.

We’ll try again. The last time the message was cut off. BTW, thanks Leila & Harold for the support.

Once again…Dave’s worry is very valid.

Between the media overhyping cases like Carly’s and extraordinary but false claims of facilitated communication and rapid prompting, we are creating a mythology that inside every person with autism is a kind of philosopher-poet, a hidden genius with fascinating things to say. We no longer allow people with autism the dignity of being seen as who they really are: people with a serious disability who also have the potential to make tremendous gains with effective interventions. We now imagine them as something else. As almost magical beings. It is truly frightening to read, in Caroline’s comments, another apparent instance of the “Mommy, I love you” scam which we see done at facilitated communication meetings and workshops. Desperate parents hire facilitators who get their kids to say “Mommy, I love” on the first time out, or not too long after, then get offered consultations or training–for a cost. If it were anything else, like one of those modeling scams in which girls are “discovered” on college campuses then pay hundreds for fake auditions and a few photos, we’d smell the con a mile off. But the myth of the hidden genius allows us to believe that a child who has never spoken, read, or typed in his or her life can spell out whole sentences the very first time facilitation is used. No one will win any prizes for guessing that the facilitators do not also offer to do real, double-blind validations of the communication or recommend that validation be done periodically to ensure that facilitator control is not developing. No, the mantra is “don’t test.” Testing is an “insult.” The facilitators know consciously (if they are crooks), and unconsciously (if they are sincere), that if testing were done, the parents would find what we always do when we test for facilitator control–that the facilitator is really doing the talking. If anyone had done any testing in Michigan, we wouldn’t be seeing another case of bizarre FC abuse allegations against another set of parents. That child supposedly typed sentences and did math on her very first time being facilitated. In reality, FC failed two in-court tests without single correct answer, and the typed allegations are so full of factual errors that it can only be a strong, abiding faith in the myth of the hidden genius that causes the prosecutor and judge to believe the accusations.

http://www.freep.com/apps/pbcs.dll/article?AID=/20080206/COL04/802060366/1081

If Carly is actually communicating as the parents claim, it occurred because of years of careful, painstaking step-by-step ABA teaching. With facilitated communication and rapid prompting, when we finally get to do the validation tests, we invariably find the facilitator doing the communicating. We hope that isn’t the case with Carly. But we so desperately want to believe the philosopher-poet mythology that we gladly overlook certain troublesome details. The FC kids don’t look at the keyboards; they type wrong answers they should know; they don’t read books on their own. We become so confident in our casual observational skills—seeing is believing–that we don’t check more carefully. In Carly’s case, no one is reporting any validity testing; even a scientist of some note was willing to make a validity assessment based on watching a news video. It is precisely when we are overconfident that we need to step back and do the homework.

We can take Rapid Prompting as another case in point. In the book, Strange Son, we read that Tito can write letters–but only does so intelligibly when his mother is present. Over and over, we find that Tito can’t answer questions that his mother doesn’t know the answer to. The mom’s reaction to these embarrassments was to limit the topic of “conversation” to things she already knew the answers to or having Tito write content-free poetry and musings about the autistic experience. We also read that when someone included a message-passing validation in one of the many testing protocols, Tito failed completely. His mother’s reaction was not to investigate further, trying to figure out where Tito’s skills ended and influence took over. No. She made sure such things were never done again. Author Portia Iversen then labeled the procedure an “inquisition.” A message-passing test is about as benign a thing as one can do. It is hardly an “inquisition.” When Iversen’s own son failed to correctly answer questions his mother didn’t know the answers to, those failures were noted–then rationalized away. In the end, the objective empirical evidence that these two young men do not seem to be able to do what is claimed of them is discounted in favor of simply believing that they are two more hidden geniuses discovered through a variation on the facilitated communication formula. But because of the myth of the hidden genius, thousands and thousands of readers believe it too. The faith is so strong that RP is completely real that Iversen doesn’t even have to hide the fact that she’s really doing FC, complete with laminated FC-style letter boards being held in the air for kids to point to just like you will see at the FC meetings.

http://www.strangeson.com/playVideo.php?id=61

Rapid prompting is just FC–but looks like something else because the child’s hand is not held and the prompting is hidden in what seems to be real literacy training. But because the proponents of RP simply dismiss the problem of influence, and do nothing at all to protect against it, it will inevitably occur. The RP people don’t even give influence the lip service that the FC people do. A combination of pure faith in the process and a disdain for validation rivaling that seen in the FC community means that no one will check to see if the child’s typing is real, influenced, or something in-between. Sooner or later some teacher, parent, or aide will be falsely accused of some kind of abuse and, as we see in Michigan, spend a life savings to defend against a technique that not one properly controlled scientific study has ever shown to work. In the meantime, we will force our own fanciful preconceptions and misconceptions on people with disabilities instead of according them the dignity of being who they really are and helping them achieve their real true potential.

My son definately can write independantly at a far far higher level than he can speak. He has about 300 words that he uses verbally … but he can write just about anything independantly. It began because of his Rapid Prompting training through Soma at Halo.

Your right assistive technologies for communication can be lumped into the same category as facilitated communication but it’s not the same thing at all.

I have to say that the news footage on Carly was pretty convincing. Given that I am skeptical about facilitated communication, it left me thoughtful and interested.
I am wondering what the receptive language skills are vs. the expressive skills.
This is new territory that begs to be investigated in detail.

My sister is a very verbal yet classic autistic, in her 50s. When she literally rejoiced when our mother died, because Mother was no longer able to provide the level of care my sister expected, there was no mistaking what my sister felt or meant. So I am afraid that I agree that all these “Mommy, I love you” messages that come via assisted communication ring hollow to me.

I have a 22 year old son with Autism Spectrum Disorder. He is non-verbal. He was taught to communicate by way of a letterboard after we took him to the HALO (Rapid Prompting Method) clinic in Austin, Texas. We had no clue that he knew so much. At our second camp, he was writing short stories — unassisted (Rapid Prompting is student initiated –no physical prompting is permitted).

Rapid Prompting (or RPM) is based on how the brain works. RPM and FC are different. You can visit wwww.halo-soma.org and read about how they differ.

My son is extremely apraxic. He is right brained auditory and verbal. He has difficulty with tabletop work, fine motor control and focal vision. The beauty of RPM is that it works alongside these limitations caused by underconnectivity in the brain and adapts the technique and material to the open learning channel of the student. It is effective for most any learner. It is used to teach academics (modified general education curriculum); communication is taught in the process.

I have seen in work in many, many students considered to be “low functioning” (I really hate that term.)

You don’t have to believe it — but it doesn’t cost anything to look into it. It is low tech and low cost. Paper and pencil and perseveration are all that is needed. Some students progress from the letterboard to a keyboard; some even go on to independent writing. It is a process that takes time and effort.

When I heard about Rapid Prompting, my initial response was — “Yeah, it works for _____, but it won’t work for my son.” (nothing ever did).

I am pleased to say that I was wrong and our lives have been forever changed.

My son is 10 yo, echolalic but with little functional language. He learned to communicate via RPM, starting at age 4. By 5, he was spelling independently on the letterboard. Now in the 4th grade, he is fully included in the gen ed class and doing the same work as his peers. He’s no savant genius, but he’s pulling A’s and B’s, and no one who sees him work has any doubt that the work is his. Learning and communication are possible for our ASD kids, and there are hundreds of kids who have learned RPM to prove that it’s no fluke. Why on earth would anyone be intent on insisting that our kids are mentally retarded and incapable of learning? Because they’re too lazy to put in the work to get there?

Mary

dave “guesses” that the “so called” rapid prompt is just more of the same–someone else is doing the actual communicating, like fc. dave has obviously done his homework, like so many professionals who base their opinions on traditional pre-conceived notions of what autistic kids are NOT capable of.

i have never seen fc in person and don’t claim to know much about it, therefore i can’t judge or scrutinize something i am not knowledgeable about (like dave), so i can neither critisize nor support fc.

however, the difference in our lives since rpm was introduced to my 9 yr old daughter 2 years ago is staggering. i don’t remember the first thing she communicated independently (it wasn’t “i love you”), but several months later i asked her what she wanted to work on with our consultant, and her response was that she wanted horseback riding lessons, something i never dreamed of. now, after 18 months of hard work she has a realistic chance of making the state special olympics equestrian program. these weren’t things i wished for her–she wished them for herself. furthermore, if i was actually the one producing the wonderful prose she has spelled out, i’d be the heir apparent to robert frost. my daughter has spelled out words i’ve actually had to look up in webster’s.

those of us who have been fighting this battle for years are painfully aware of the carnival barkers who are in this for $ or glory. this little clinic in austin is clearly in it for all the right reasons. if you go deeper into the material, dave, you will learn this.

its a shame that dave thinks we are all exploiting our kids to make us feel better about them. should we lock them away instead, dave? that would certainly be more convenient. that way we can go on believing that most of them are low functioning, just like we’ve been told all these years. doctors/psychologists/therapists are never wrong about these things–especially when it comes to a disease with no known cure!

the “myth of mythical proportions” that you describe, dave, could easily refer to your own research methods. you need to go beyond “guessing” to make a valid point.

I could say a few rotten CHOICE words here, but i’ll be above those who CHOOSE to be negative without having the experience or knowledge to “comment.” Some time after my daughter was diagnosed with autism I heard a quote that has stayed with me… “If a child cannot learn in the way in which we teach, we must TEACH the way the child can learn.” If there is a way that a non-verbal person can communicate, CELEBRATE it!! And DO NOT deny it!!!! Give credit where credit is due… to the beautiful person living with autism.

I know little about FC (Facilitated Communication) but I have seen the RPM (Rapid Prompting Method) work for many severely autistic children and there is no doubt in my mind that it works and that the typed or spelled-out thoughts are originating from the child. I am also convinced, by what I have seen, that autistic children are quite capable once they have a way to communicate.

I am a very skeptical person by nature. I am an engineer by training and run a small business. My children are fully grown and I do not have a child with Autism. I became involved with the HALO organization in Austin, Texas (where the RPM method is used) doing work for them to help document, through video, the progress made by their autistic students.

In doing this, I have personally seen a number of students progress from the time they started with RPM a few years ago. The changes in these students are nothing short of amazing. At the end of 2007, many students spelled out stories for a small book. Each story clearly reflects the personality of that student. This cannot be staged in my view.

It is hard to explain it to anyone who has not seen it, and provide “proof” or convince someone beyond a doubt that there are no “magic tricks” going on in a short visit. I know I was skeptical in my first few visits. But over time, once you get a feel for each student’s personality, his or her level of training, what their hopes and fears are (and so on), you can tell when something genuine is coming from that student and not from another person’s mind — or from some other random phenomenon.

Some are skeptical when they see stories about Autistic children who achieve extraordinary success. This, in my opinion, is understandable. Not all Autistic children are destined to be phenomenally successful. They have no “super powers”. But from what I have seen, they seem capable of functioning quite well once they have a way to communicate.

Those who suspect a scam, lump RPM in with other methods, and imply practitioners are bilking desperate parents, should know that HALO is a non-profit organization. Most of the people involved are volunteers who take no salary. Many of the volunteers have sons and daughters in the program and their goal is to help others get the help they found for their children. While HALO does charge for sessions to cover costs, no one is getting rich by any stretch of the imagination.

I hope people will at least keep an open mind about RPM.

My usual response to those who have the “can’t speak-can’t think’ mentality is
‘my brain is not in my vocal chords”. We don’t accuse someone who is blind and can’t drive a car of being unable to work. Or a person who is deaf and unable to sing to be incapable of writing poetry. So why if someone has a disconnect between the the middle of the brain and the lips do we determine that they can’t think???
I am tempted to ask those people – so that means that if you had throat surgery or the mumps and couldn’t talk then you can no longer think ? Its amazing that some of these so called professionals managed to pass anatomy class!

The very point of the training in Rapid Prompting is to build up the influence over time so that it appears invisible. The Rapid Prompting people do an excellent job of it. I think the refusal of the main proponents of RP to do and advocate real validity testing speaks volumes.

Seeing is believing? Casual observation is not good enough to tell us that influence is not occurring. Having faith that we are not influencing the output, or believing that simply being “aware” of the possibility of influence, is not enough to keep influence from happening. Remember, people believe in the authenticity of FC when when they are watching someone hold a kid’s hand using the finger as a pointer, banging away at letters on a laminated board:

http://www.childrenshospital.org/clinicalservices/Site1850/Images/Frontline.mov

It’s got to be much easier to believe something is real when the influence is so much more subtle. Or is it? Why do we believe this is more real? Engineer or not, we just want to:

http://www.strangeson.com/playVideo.php?id=61

Remember also that every facilitator who was shown, unequivocally, to be authoring FC output claimed to have been completely unaware of doing so. Why mention this? The facilitator doing the influence was also watching the process the whole time. If the facilitator can’t see the influence from such a close vantage point, how much chance are we going to have looking from afar and only occasionally?

Looking just isn’t good enough. Sincerity isn’t good enough. Lives are at stake. I challenge every person doing FC and RP, who has the strength of their convictions that the FC or RP output is completely independent and genuine, to do properly controlled double-blind tests and other assessments to assure that everything is real. Why not? Seems prudent. We all know that influence occurs. As sincere are you are, it could be you controlling the output. Just like the FC people who were shown to be the real authors, you just can’t feel it or see it yourself. Testing is not an “insult.” How much more of an insult could we inflict on people with disabilities than putting words in their mouths, speaking for them, perhaps for the rest of their lives, without ever really checking to see if it is us or them doing the talking?

Three points in regard to the primary skeptical commenter.

(1) Many of us with knowledge of RPM have no incentive to “want to believe”. I, for example, am very fortunate to have no relatives with Autism, so there is no compelling emotional need to believe. There is also no financial incentive. Most of us volunteer our time.

(2) As for more evidence that the communication is originating from the child, all you have to do is ask a parent who has had a child in the RPM program. Children often “talk” about things they remember from the past. There are names, dates, places and other specifics that the person working with the child would have no way of knowing but that the parents readily remember and recognize. And these are not vague things that an unscrupulous practitioner could guess at. They are very specific.

(3) Why not more scientific testing? My personal observation is that the people involved in RPM are working long hours with the children. I think more testing would be a good thing, but it may not be the highest priority of the people who are working long hours with large numbers of children. They seem to revel more in the success in the personal lives of the children and families they work with.

Mr. Murphy:

Thank you for taking the time to respond. Unfortunately, I am afraid that your comments just make me more convinced that the proponents of RP are uninterested in demonstrating the validity of their methods. Instead of testing, they want to pin everything on indirect evidence and interesting observations. I actually knew that my challenge to validate RP was just a whistle in the wind. The point in making it was to see how quickly it would evaded. I don’t anticipate an invitation to do testing either. Just like with FC, there is unlikely to be any testing unless a court is involved because the proponents of Rapid Prompting know or fear, in one way or another, that their children are not really communicating independently to the extent they believe them to be.

You talk about the kids typing out specific information that the facilitator couldn’t know. We are into our third decade of having the FC people point to the specific information in FC output as “proof” rather than doing any kind of real validity testing. Now the RP people are doing exactly the same thing–for the very same reasons. But the content is not the proof; it is what needs to be proved. Haven’t we seen enough cases where facilitators swear they couldn’t have known the information in the FC output only then to discover that the output was totally and completely controlled by the facilitator? Why are the RP people somehow immune to the same problem? As I write about this, I am reminded of Marian Pitsas’s heroic appearance in the PBS Frontline documentary, “Prisoners of Silence.” She had convinced herself of these same things–but then did what no one in the FC or RP communities will do today: participate voluntarily in a validity test. In fact, the O.D. Heck FC study Pitsas was part of may have been the last time that a group of dedicated FC believers had the courage to put their beliefs on the line.

Pitsas: http://www.childrenshospital.org/clinicalservices/Site1850/Images/Frontline5.mov
O.D. Heck study: http://www.cqc.state.ny.us/hottopics/fcwheel.htm

And who cares if the facilitator claims not to have known about the events described in the FC or RP output? We have more than enough information about the fallibility of memory, especially from the work of Elizabeth Loftus, to ever be convinced when a facilitator just says that he or she “couldn’t have known” what was in the child’s FC or RP output. Things just aren’t controlled well enough in everyday interactions, especially when facilitators are family members or “like a member of the family,” to believe that all kinds of critical and private information isn’t getting around to everyone. Besides, people remember things that never happened all the time; they forget things all the time; they create hybrids of real and imagined things all the time; they make reasonable reconstructions of things they didn’t experience all the time. Once again, the stakes are too high for anecdotes. We owe people with disabilities, often our own children, more than merely believing that our treatments work.

Loftus site: http://socialecology.uci.edu/faculty/eloftus/

What about this apparent lack of time to do testing? You say testing “may not be the highest priority of the people who are working long hours with large numbers of children.” You are quite obviously correct. But what can one say about such a thing? Maybe this: “The Halo-Soma Institute is promoting and using a treatment method that has never been demonstrated to be clinically effective with disabled children whose individual outcomes are not being objectively validated.” Why is that not some sort of crime? Are we really supposed to believe that in all the time that all that RP teaching goes on that there aren’t a few minutes here and there to insert a few genuine validity tests? Of course there are. Are we really supposed to believe that a robust intervention technology can’t incorporate ongoing controls and testing to validate individual outcomes? Of course it can. The behaviorists have made an institution of doing exactly those things: putting real experimental controls in their interventions, conducting functional analyses to determine which variables are really doing what, implementing unobtrusive probes and follow-ups to test for generalization and maintenance. And, they are no less put upon for time, and are working no less hard for the children they serve.

I’d like to think that the RP people would be like Marian Pitsas and have the strength of their convictions to actually test the validity of their methods and outcomes–and then accept the results even if they were not what was hoped for. I am convinced the RP people do not and will not. As a result, people with disabilities are being harmed and more will be harmed. We are seeing facilitated communication reborn in a new form, a little prettier and more subtle in its methods. But it’s FC all the same. I don’t agree with the FC people very often, but I do agree with them completely when they complain that RP is just a plagiarized version of what they’ve been doing for years. Indeed, in a strange way they even have my sympathy that they are not getting due credit for RP, finding themselves dismissed by people who have not only built upon their work, but have literally stolen their methods, arguments, and rhetoric (right down to the laminated letter boards). I guess the big question is why the RP people aren’t recruiting a skeptic like me to do the validity tests you say they don’t have time to do, settling the issue of the effectiveness of RP by proving me wrong. What would be better than having the critic provide the proof? I’d be up for it–but I don’t anticipate having to set aside the time. The RP people know two things very well: (1) Their methods would not stand up to objective, scientific scrutiny and (2) they don’t need proof to sell their story.

That “open mind” you talk about. Whose mind is really more open? The people who are willing to take the risk of being wrong by doing the science, or the people who refuse to put their claims to the test?

Jas

Jas –

Your exhaustive comments about why you believe RPM has not been studied/ researched/tested are based on very little actual knowledge of the HALO organization. You imply that there is some hidden agenda on HALO’s part.

Having served on the board for several years, I know first hand that our staff — mostly unpaid volunteers — have tried on numerous occasions to have research done by colleges and universities. We have been approached by those who say they are interested in doing research on RPM, only to have these opportunities evaporate due to the limited financial resources of HALO. We are busy with the day to day work of helping our kids. No one is getting rich here. We don’t have a lot of time to chase down leads, prepare exhaustive grant paperwork, not to mention trying to overcome the preconceived notion that RPM is simply FC — only repackaged.

We would be delighted to have research done — not only would it open doors for RPM to be accepted by the schools, but it would help put an end to these diatribes. We are working toward that end. If it happens, it happens. If it doesn’t, I dare say it won’t deter the parents and students who keep coming back and the many families who are on our waiting list.

You would be hard pressed to find anyone who comes away from the HALO clinic disappointed. Take a few minutes to visit the HALO website and view the case studies posted there. Read about the exhaustive research done on Soma’s first student — her son, Tito. Listen to parents who comment about how their childrens’ explosive outbursts have diminished significantly since having an outlet of communication.

Beyond that, if you are convinced that RPM is not worth considering, then you are left with your opinions and I with mine.

And I am very happy with our results.

Jas, I have some serious questions for you. Since you’ve appointed yourself the one who can save us all from delusions, what are your credentials? Please tell me where on the Internet I can find information about your methods and abilities? Also, tell me please how many times you’ve seen RPM first hand? I’d also like to know exactly what you deem “influence”. What is this subtle influence that you’ve so brilliantly deduced but so deftly avoided defining? No one is in it for the money, to scam people, or to get famous. And might I add that even if any of what you say were true, which it patently is not, RPM encourages parents to read to their child, explore interests with their child, and talk to their child. You accuse us of taking our children’s dignity away. How could we forget how much respect our children are given when they are thought to be retarded? Many of the RPM families worked for years using behavioral therapy at the cost of up to $100,000 a year and got little return. I can still remember a VB conference I attended where a video clip of LOVAAS-style ABA was being ridiculed because a child who could not ask for a glass of milk was being taught about a crescent moon. If you look hard enough, you can find video clips that make anything look bad to serve your own purposes. I’m looking forward to your responses to all of my questions.

As a person who has experienced communicating with many different people on the autism Spectrum via fc (not as a facilitator but as a person interested and willing to communicate with those with difficulties) I am a firm believer in both fc, and in the fact that those with severe difficulties are intelligent. I have less exposure to RPM but believe that it is as relevant as fc if it provides a way for those with autism to clearly communicate their thoughts and feelings with us. A communication disability does not at any point indicate the level of intelligence. It just limits our ability to tap into that intelligence in a way that is meaningful to us.

Negative responders: have you any clue at all to the damage you do by limiting people this way, based on your own unwillingness to open your minds to others?

I am always distressed by those who claim that stories from the real lives of people are less meaningful than scientific studies. What are we dealing with here? Lab rats? or real people. You wouldn’t want your life limited in that manner. That which happens in laboratory situations has little relevance in the lives of most people on this earth, much less those with autim. It is what happens in real lives, on a day to day basis that makes the real difference.

And for those of you like Dave who obviously speak before you actually do the research…..yes there may be some studies out there that make claims that the facilitator is influencing what is written, but anyone with any knowledge of scientific reliability and validity can see through those studies in minutes and they are NOT the only studies out there…..there are as many positive studies as negative ones. Do your homework, before you open your mouth claiming to know something.

You can judge for yourself

http://www.youtube.com/apotnis97

There is a saying in the Autism World “Just because I can’t speak does not mean I have nothing to say”. I think that sums it up pretty well. Through FC, through other means of Augmentative communication these kids have demonstrated that there is often much more there than they are able to readily show. In addition those trying to figure this out need to be open to the possibility, there have been lots of studies to try to disprove FC, but if you look at the sources alot of them are non-believers from the start and seem to really be trying to prove their point, not really trying to find the answer!

I can not speak to the validity of others’ experiences with Facilitative Communication. I suppose it is possible that some have had negeative experiences with it.

What I have seen is compelling. At the onset of the training period a heightened level of social engagement – very articulate expressions of the frustrations. And then of course the independant typing slowly emerges.

I think it more likely to reconcile one’s critcisms of the practice as we familiarize ourselves with the apraxia/dispraxia and the notion of internal disorgnazation of expression for both the thought processes/behaviors and the speech process.

Educator

My son is a non verbal autistic teenager. He has had sessions with Smoa using RPM method it was a miracle if I hadn’t been in the room I would not have beleived my eyes. My son is in there and understands everything. He just has a hard time getting it out. Soma opened up a new door in our world. Families like our need to try all different things noone is an expert on Autism there are too many subtle differences in each child.

I am autistic and I am verbal. Diagnosed with PDD NOS at age 6. There was a time around age 4 when I was just starting to learn language. I remember “saying” whole sentences, only when I ask my parents, they don’t remember me speaking. It puzzles me why this is. I know for fact that I actively “speak” in my head a lot more than I vocalize. I’ve always wondered if it is that way with many nonverbal autistic people, only for whatever reasons they aren’t able to vocalize what they think.

It doesn’t surprise me when I find stories of autistic people formerly nonverbal and considered by society to be non-thinking to blow away people’s minds once they become able to communicate in some form. It also takes a lot of the “magic” out of it. I’m not really surprised. I think a lot of the puzzle to autism is trying to figure out the non-autistic people and hand why they see me and others as such a puzzle.

While we are at it, I may as well bring up another hot autism related debate: meltdowns and self injurious behavior. I honestly believe a lot of the aggressive meltdowns people see are the result of frustration from the autistic person’s perspective and the inability to communicate/express the emotion they are feeling at the time.

I used to have meltdowns like those as a child and as an adult I may feel the urge, but as I’ve learned to recognize what I am feeling and find ways to communicate and express what is upsetting me, I’ve found I can cope with those feelings better.

In the midst of a meltdown, the best I can think to describe it in “non autistic terms” Imagine it being 3am in the morning, you’re reminded about a negative memory, perhaps a bad break-up with a friend, anything that would make you upset. There’s no one to talk to and the feeling just builds up.

I used to believe as a kid I had to “magically” stop feeling whatever was making me cry and just will away the emotion. It made me angry I couldn’t cope with feelings such as loneliness and rejection on my own.

I’ve learned there are some emotions that can’t be coped with solo. That’s why it is helpful to communicate and share feelings with other people.

Unfortunately for the nonverbal autistic person, they _really_ are having to cope with their feelings on their own. I can see why someone would bang their head up against a wall or whatever else. Another thing that doesn’t surprise me.

I honestly believe that if there is a way we can help all autistic people become able to express their thoughts, emotions, feelings that would resolve about 95-99% of the meltdowns associated with autism.

I have autism and I have to say that I believe that the majority of cases of Facilitated Communication and Rapid Prompting are false. I am not “non-verbal,” but I don’t talk much or very well and have problems with language.

People seem to forget that autism doesn’t simply impair communication and social abilities and cause repitive movements; it effects the way one thinks. People with autism have rigid thinking, obsessions, lack empathy and have difficulty with language (e.g. taking things literally). If a non-verbal autistic person previously assumed retarded begins typing I wouldn’t believe it unless it consisted of obvious “autistic thinking.” Read anything by a high functioning person with autism and/or Asperger’s (or a “true” case of low functioning autism being able to type, of which there are very few) and you’ll know they are autistic by the way they think (write), not merely by their outward symptoms.

So, if a non-verbal autistic person begins typing and it turns out they are really a hidden social butterfly and/or types “I love you mommy” and/or is able to stand the pressure of performing in front of others (”being in the spotlight”), I wouldn’t believe it. Non-autistic people just don’t understand that I want to be alone and am happiest pursuing my obsessions and whatnot. My own family doesn’t grasp that I would be fine without them, that I’d actually prefer to be without them; I would be fine living in an instuition as long as I got to pursue my obsessions and sensory pleasures. And I can’t take being in the spotlight, it’s too much for me. I can play the piano but I never give performances because I can’t handle it. Obviously, I’m intellectualy capable, but I want different things and think very differently from non-autistic people; I’m not simply impaired in social and communication skills and have repitive movements.

I’ve read studies where they’ve found a very small percentage of FC and RP to be true. So, I think they should still pursue FC and RP if only to find the very small percentage of these people. I would like a study done to see if there are any differences in symptoms between “low functioning” autistics that are able to type independently and those who are not. For example, I can’t talk well because of oral apraxia but I’m obviously able to type; words are there, they just get “lost.” I’m just curious if there are any subtle differences in symptoms between the groups, those who are mentally retarded with autism and those, like me, who are intelligent people with autism. I just happen to be a highly intelligent person with autism and there are others, not very many, but if they can find only one than it is worth it. If I was any less intelligent I would be “low functioning” and probably subject to the same kind of abuse as these poor children are going through.

Of course, no parent wants to admit that their child doesn’t want to be with them or even truly cares about them. But, I would be so much happier if my own family would face it and isn’t it every parent’s wish to have their child be happy?

The case in Michigan re: FC was because the PARENTS insisted, to the school, that their child was writing poetry etc and DEMANDED the school get trained in FC. When the child made the allegations, the parapro IMMEDIATELY went to get the teacher and the teacher, then, finished the interview.

The validity of Facillitated Communication has been disproven in a court of law. RPM is a form of FC, because it requires a support person in order to communicate. When videos of these sessions are closely analized the prompting is revealed. This a parlor trick being used to trade upon the hopes of fears of the parents of autistic children for profit. The fact that it is finding its way into the school system is distrubing.