Ronald Leaf, director of Autism Partnership, a private California-based agency, says he prefers to help autistic children such as JW learn how to navigate their world without gadgets. "If we could get children to talk without using technology, that would be our preference," he says.
Dear Dr. Leaf,
I was saddened and disappointed to read your comment in the USA Today article about the Proloquo2Go application for the Apple iPhone and iPod Touch. I felt it was a glib dismissal of a technology and a communications philosophy that has helped and will continue to help thousands of young people who are unable to speak but deserve to be heard.
I am the author of Schuyler's Monster: A Father's Journey with His Wordless Daughter, a memoir that tells the story of raising a little girl with a rare brain malformation that leaves her unable to speak. The book ends, and her future begins, when she is given an augmentative alternative communication device that helps to facilitate her speech. Four years later, because of this technology (in her case, a Vantage Lite, produced by the Prentke Romich Company), Schuyler spends the better part of her day in a mainstream third grade class alongside her neurotypical classmates. She recently passed the modified TAKS test (the No Child Left Behind component for the state of Texas) and is on track to continue her schooling and even graduate from high school. Where four years ago, she was pushed off to a special education Life Skills class and was given no prognosis for an independent life, Schuyler may very well get a chance to live whatever life she chooses. None of these possibilities were placed on the table until she had the ability to speak and to learn how to construct language. All of this, because AAC technology gave her a chance.
Schuyler is hardly alone in her achievements. Her story is only unusual in that she was ultimately able to receive the speech device that could help her. She and her fellow AAC users represent only a fraction of those nonverbal kids who stand to benefit from this technology. AAC helps thousands of kids and adults find a voice and overcome a wide range of disabilities, from Schuyler and her polymicrogyria to kids with cerebral palsy or, yes, autism. As you are no doubt painfully aware, the frustration of being unable to speak can be as crippling to a child as any physical or mental infirmity. I have seen it time and time again, children who were not just nonverbal, but closed up inside an internal world of their own, unable to make the basic human contacts that they needed so desperately. All because they had to struggle simply to make their most basic needs known.
Kids who use AAC technology gain more than words on a "gadget". (In all fairness, that was a word used by USA Today, not yourself.) They find a door into a larger world, a door once locked but now ajar and ready to be kicked open. Those of us who have watched AAC technology at work have found that when these kids are suddenly able to speak through the use of electronic assistance, they show dramatic improvement in other areas of communication such as sign language and even verbal speech. This effect is of particular interest, and promise, to children on the autism spectrum.
"If we could get children to talk without using technology, that would be our preference." As the parent of a child who can't speak but who has a world of things to say, I must confess that I'm baffled by that remark. If you are saying that you'd rather see these kids use their natural voices than a computerized voice, then of course I agree. But what if the path to finding that natural voice involved technology, as is so often the case? Would you dismiss that technology so casually if there was even a chance it could help?
There's more than just a chance.
Dr. Leaf, you were quoted by USA Today because you were perceived as an expert in your field. I sincerely hope that you will take this opportunity to educate yourself about AAC technology. The next time you are called upon for answers and for wisdom, you might just change someone's life, and give them a voice.
Robert Rummel-Hudson
Plano TX
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36 comments:
Good job.
Bravo! As a teacher of students with autism, I applaud your thoughts. Literacy development and the development of communication skills (voice, AAC, sign, whatever works) is the key to independence for individuals with ASD.
I'm forwarding this on to many I know...
Beautifully said. As the parent of a child who could possible need one of those "gadgets," Dr. Leaf's comments really ticked me off. I don't care *how* my son learns to communicate (sign language, AAC device, smoke signals), as long as he is given every opportunity to do so. Isn't that the most important thing? To give every child a voice?
Thanks rob for putting that proper! I think proloquo 2 go is the best idea since sliced bread and although the "devices" Those may not be named are too expensive as a technology but are a neccesity
A very good rebuttal/defense of assisted technology's role in helping people who can't voice their needs/ thoughts. I really think you should submit it to USA Today as another side of the conversation Dr. Leaf initiated. Its well written and thought out and if published (as it should be) it will help to educate those readers not intimately familiar with the use of adaptive speech devices and their vital importance. Salute
Barbara from Boston
Nice job, Rob. You gave Dr. Leaf plenty to think about. I truly hope he reflects long and hard on what you've written, and reconsiders his offhand dismissal of those "gadgets" that help connect children to their world.
Sue
Damn, you've got a way with words, Rob. Thank you for, again, being a voice for those of us who are struggling to find our own voices as parents of nonverbal children trying to help our children communicate. I'm crying and cheering...and sharing this with as many people as I can!
Nicely put, now go mow the lawn ;)
Right ON! Just shared this on Facebook...
As a Speech Language Pathologist experienced in the area Augmentative and Alternative Communication, I am appalled by Dr. Leaf's comment. The majority of my kids are nonverbal due to a wide range of reasons. Everyday, at every moment, they require the use of technology to speak and be understood. I do not even want to imagine what their worlds would be like (or rather, not be like) if they did not have the opportunity to communicate and develop their use of language on their “technology” (e.g., Vantage, Vanguard, DynaVox, Tech Talks, Go Talks, Able Net switches, PCS communication boards, etc., etc.) in order to express themselves and fully participate. Children who are nonverbal are essentially locked into bodies that don’t (for an assortment of reasons) allow them to speak. To deny our children the use of technology is to deny them from living a life to their maximum potential. Never, never, never put restrictions on a child due to use of a “technology.” To do that is to deny that child of the most basic human right.
New technologies such as the Proloquo2Go should be welcomed, especially since many people (particularly children) who use AAC devices opt not to use the device at times for fear of looking different. How great is it that JW gets to be the cool kid in class, finally getting the chance to let everyone know he really IS a super genius!
~ The Passionate AAC SLP
Leaf's comment seems bizarrely out of place in that story. I wonder in what context he made that comment, or what reasoning he gave.
So Schuyler's AAC can be harnessed with an iphone app now? That is fascinating. Are you considering it for her, perhaps as a "travel" version of her BBoW?
So Schuyler's AAC can be harnessed with an iphone app now? That is fascinating. Are you considering it for her, perhaps as a "travel" version of her BBoW?
No, Schuyler's device uses a different language system and a very specific layout; it wouldn't fit on that tiny screen. We might try it out sometime, just to get a sense of how it works, but I doubt that it would ever really work for her.
But for a LOT of AAC users, it's really going to change things.
I hope you really did send that letter.
I just finished your book because my daughter is majoring in Speech and Communication Disorders and hopes to work with young children.
I'm passing your book on to her.
As usual, well said.
Many disability and healthcare professionals are biased towards what they perceive as normal, thinking it better for the child even if it means giving up some functionality. This is a case where the world will just have to adapt to our technological solutions.
Oh my. I'm really hoping Dr. Leaf was quoted out of context. I would be so relieved to read that his entire statement was that he would prefer children to talk without using technology "...because machines can lose power leaving a child unable to speak" or maybe "...but it's not possible for all children so for those who can't speak this would be a great benefit" or better yet "...because our goal is to improve our treatments so that every child is healthy and has a voice." I really, really hope that he isn't just dismissing a valid and much needed tool.
Please do submit your letter to USA Today and/or send it directly to Dr. Leaf. It was so well written and I'd very much like to hear his reply.
I agree that you should send this on to USA Today. They need to hear the other side.
I hear and see this kind of comment all the time. I'm a special education teacher who has worked with people using AAC devices of all types, and I also teach swimming (usually to students with some kind of special need) on the side. If the student I'm working with in the pool cannot speak with their mouth, I always ask the parent (or if I can, the student!) about a communication system. I would say 75% of the time, I'm told the SLP said that if they used AAC or PECS or Picture Boards, the student would never develop speech or true communication. I'm horrified by this each & every time, and tell the parents that research proves exactly the opposite. For the last year, I've referred them to your book, because its easier to understand than the "research". But... We need to stop this kind of misunderstanding. People like Dr. Leaf make the job so much harder! Its so similar to how children who are Deaf or Hard of Hearing were treated: getting their hands slapped for using sign language, and their parents being told if they signed, they'd never learn to lip read. Ugh. I would have hoped that in the 25+ years since PL 94-142 & section 504 were passed that we had learned more. Guess not. :(
Beautifully written, Rob. You've made your point in your typically eloquent and articulate way, without judgement or disparagement.
What could Dr. Leaf's motivation have been? Well, yeah, it would be great if no children needed "gadgets" to speak. But, as he well knows, some children don't have the mechanics or the wiring to make it happen. So what exactly is he proposing for those kids? Speak or you're not worth hearing?
Maybe he believes that these "gadgets" are a crutch that keep children from otherwise developing communication skills? If so, he's never watched a kid use one. Because it's clear when watching Schuyler use Pinkessa that she's communicating in many ways. She uses her voice as smuch as she is able. She uses gestures, facial expressions, and other body language. And periodically I believe I've seen her throw some signs in, too. My observations are merely anecdotal, and based on a kid I've only seen through video clips, but it's hard for me to see how someone could believe that she is using her device to the exclusion of other communication tools.
So what does that leave? I think he just didn't think it through. Maybe he's the kind of guy who refused to buy an answering machine or who resisted buying a cell phone for 10 years because his knee-jerk reaction to new technology is "why do we need THAT, we got along just fine without it before."
Or maybe, like another poster suggested, his remarks were taken out of context.
Either way, your response is outstanding. And I agree that you should send it to USA Today as well as the good doctor himself.
I just sent an email to the reporter who wrote the story as well, pointing him here. I also pointed out some issues I had with parts of the story, and I hope he'll take the time to learn more about AAC. Looking at some of his other work, he's sympathetic to special needs issues and will hopefully be open to learning more about the topic. We'll see.
I just read the article. The article seemed positive about the technology, and had I not read your letter, I wouldn't have attached a negative tone to Dr. Leaf's comments. Unless you know something about Dr. Leak that's not in the article, I think you are being premature in your criticism of Dr. Leaf.
I wonder why USA today chose to interview Dr Leaf. Don't get me wrong, maybe he is some kind of big wig.... but frankly, I have been reading a great deal in the the autism literature and I don't know of him. I could find a dozen other, WELL KNOWN, autism experts that would be more appropriate for USA today to tap for a response! Why not someone from Autism Speaks, the premier advocate agency for autism? Or the Mind Institute in San Diego, conducting some of the most cutting edge research? Or a dozen other national experts whose voice would truly be valid?
While critizing Dr Leaf is appropriate, I would more strongly object to USA Today's fairly sad attempt to find a voice that objects to the technology. I really do wonder if his comments were taken out of context.... but even if not, I think that the depth of the discussion was piss poor. Bubble gum journalism at best, catering to people who don't want to think.
Pia
The point everyone seems to be missing is that many, many children with autism can learn to talk if they receive appropriate and intensive intervention but too often children miss out on that opportunity because people aren't aware of (or have been unfairly scared away from) effective educational methods.
If you had a child who couldn't walk and someone said here's a great new wheelchair, it would be important to first make sure that the wheelchair is really necessary. Maybe with rehab, the child could be walking on his own.
I understand that there are children who need AAC devices and fully support making them available to children who need them. But they are a distinct minority. As many as 80% of children with autism who are nonverbal at the ages 2-5 can develop functional speech with intensive ABA therapy. There are lots of reasons why ABA might not chosen as an intervention, but lack of awareness of its existence and its effectiveness should not be one of them. Ron Leaf’s point was let’s make sure that people know that the vast majority of kids can learn to talk without these devices. I think it was a valid point for him to make. It’s not his fault the editor turned it into a one sentence sound bite.
John, I understand what you're saying, but there's a fundamental flaw in your your point. You are supposing that AAC is only effective as an alternative to speech, when the reality is actually the opposite. For kids with speech delays, the use of AAC is an effective tool for encouraging the development of verbal speech.
I think the appropriate metaphor is not that of a wheelchair, but of a walker, or leg braces, as part of a physical therapy regimen. Will they be necessary forever? If so, then they can provide mobility for as long as they are needed, but in the best case scenario, they are part of the answer, and of the journey to mobility. In that sense, some of the best AAC success stories are the ones where it is no longer needed.
I guess I'm not understanding, given the effectiveness of AAC as a therapeutic method as well as a long-term solution, why any reasonable advocate or therapist would reject its use from the outset.
(And thank you for your post and your contribution to the discussion, Dr. McEachin. It is much appreciated.)
I haven't seen any evidence that using AAC will speed up the process of speech acquisition among children receiving quality intensive ABA. And I haven't seen any outcome data indicating anywhere near the 80-90% level of functional, meaningful speech as a result of using AAC
We do use PECS with some of our children who are slower in acquisition of speech, but have also not seen any evidence that AAC would be superior to the results obtained using PECS, again only talking about using it as a bridge to development of speech.
For children who will need alternative mode of communication for the long term, I definitely see the value of AAC.
I had a problem with the article, and also emailed them, linking back here as I'm nowhere near as articulate as Rob is, and said so. I really wish more people would grasp that voiceless doesn't mean silent.
A couple of comments on the discussion....
First, in response to Dr McEachin's comment :
If you had a child who couldn't walk and someone said here's a great new wheelchair, it would be important to first make sure that the wheelchair is really necessary. Maybe with rehab, the child could be walking on his own.
I say this... As a pediatric RN, I can promise you, if there is a child who cannot walk, they will be given a wheelchair until rehab has progressed them to the point of being able to move to a walker, and hopefully ultimately to walking on their own. Mobility is MORE IMPORTANT than some motivational ideation of rehab eventually getting them to the point of walking.
Rehab... whether we call it physical, speech, OT, ABA, or whatever.... takes a great deal of energy and a great deal of TIME. In the life of a child, especially one without language, providing them a reliable means of communication is the GREATER PRIORITY than the MODE of communication. Expressive communication allows the individual to impact their world, build relationships with meaning, and learn. Additionally, ability to use expressive communication makes an impact on the development of overall receptive abilities as well. The longer the child goes without that, the more withdrawn, frustrated, isolated and developmentally delayed they can become.
Additionally, as a mother of a child with apraxia, I am well aware that many autistic children have significant motor planning issues as well. This precludes a "Can't vs Won't" arguement. That is, there is this idea that the autistic child is not motivated by social relationships to engage in the development of language skills. They don't WANT to.
My son CAN'T. The motor planning sequences necessary to create meaningful speech are disrupted. I can offer him M&Ms till the cows come home, but until those sequences develop over and over with sucessive repetition, he will struggle. Right now, he struggles to make even a specific SOUND on command. He wants to... he CAN'T right now. And, in the meantime, he will be frustrated. Isolated.
His social communication (eye contact, etc) is good. And yet he is behind socially due to his lack of basic communication skills.
I don't necessarily advocate that every parent with an autistic child go out and by an $10,000 system to teach language and communication. And the merits of ABA are unquestioned. But, if technology allows us to use another means.... an iphone... to open up a 7 year old with severe communication disruption, then we should embrace this BRIDGE. Because after all, speech is NOT the goal... COMMUNICATION IS.
I do NOT believe that using an AAC takes away from speech development. Rather, any enhancement in communication... sign, speech, PECS, or AAC... is a boon for ANY child whose communication skills are a challenge.
Pia Prenevost, BSN, PhD, Developmental Psychology
Pediatic RN
and
Mom to Jonathan, 2.5 yrs, apraxia
Dr McEachin, you said, "I haven't seen any evidence that using AAC will speed up the process of speech acquisition among children receiving quality intensive ABA. And I haven't seen any outcome data indicating anywhere near the 80-90% level of functional, meaningful speech as a result of using AAC."
I'm not at all meaning this as an attack. But I am curious. You have not seen evidence that it helps, but have you seen evidence to the contrary? Again, this is not an attack. I'm just wondering if maybe someone needs to do some research on this. Is it a case of knowing that assisted communication doesn't work, or a case of not knowing if it works or not?
Rob, does Prentke Romich have any info on this? To me, it seems very likely that your analogy to leg braces is a valid one, but are there studies or research to back it up? For some kids (neurotypical kids who simply had a vocal cord defect for example), it seems likely that they would learn language structure by listening. For others (kids whose problems are not in the mechanics of making sound but in neurological processing of language for example), being able to practice speech could be critical. I would think that unless those groups of kids were involved in separate studies, accurate results would be difficult to come by.
Maybe you could invite your contacts at Prentke Romich into this discussion as well. I'm envisioning a guest post in your future.
Bravo!
Karen, I have emails out to a number of PRC and other AAC folks right now, and they've been sending me a LOT of stuff. Hopefully I'll be able to distill some of this information shortly. Short version is yes, there seems to be quite a bit of research supporting the benefits of AAC in facilitating and improving all areas of communication, including verbal.
I think though the point is that every person child adult and senior should be given the oppurtunity to try. If most or all of these devices had more of a realistic price then there may not be as big of an issue, I have built two slate toucch devices 1 on Windows ce mobile and one with vista and the cost was not prohibitive. I shelled out about total $300-$500.
I have been working on my response for a couple days now and am very excited about the conversation that has started. Linking AAC and speech in a total communication system is an important topic to discuss. I am glad we all feel so passionate about it and how it relates to those we serve. Here is my response: http://www.alltogetherwecan.com/2009/05/30/aac-and-speech-are-all-parts-of-a-total-communication-system-that-is-fully-individualized-for-the-particular-individual-it-serves/
I a teenager and have (what other people call) profound apraxia of speech. Next week I hope to start using P2g. I have used other AAC in the past. What Dr.Leaf said frustrated me too. If I didn't have all of my AT and AAC I would not be able to be so independant. Now I can read, and write, and communicate better too. The people that worked for my old school made me wait for AAC and AT. My Mom had to work really hard to convince people that I needed it. Maybe if kids like me didn't have to wait so long. And prove that we need AAC our lives would be better. Thank you for talking about this on your blog Mr.Rummel-Hudson! P.S. I think Schuyler is really cool too :-)
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