May 30, 2009

Doctor Leaf responds

I got a response back from Dr. Leaf, which he gave permission for me to print. He followed up this response with another, expressing his displeasure that I posted my own letter before he had a chance to respond, thus opening himself up to criticism from all of you and further confusing the issues without having a chance to respond. He's got a point, actually. (Honestly, I didn't really expect a reply; I figured my email had enough of a "random kook" vibe to go straight to the delete folder.) My sincere apologies, Dr. Leaf.

I have to say, in all honesty, that I'm not sure that I agree with him that his quote was taken entirely out of context. In reading his response, however, it strikes me that the wording in USA Today ("If we could get children to talk without using technology, that would be our preference.") is a pretty indelicate distillation of what he says here, and I do agree that it doesn't represent his position very clearly.

Most of all, I appreciate that he took the time to respond, and I'm happy to pass that response on to you.

And yes, I do expect the rest of you to address me as Dr. Rob from now on. I mean it. I didn't not go to medical school so you could call me Mister.


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Dear Dr. Rummel-Hudson,

I appreciate the opportunity to respond to your concerns. All too often people are not given a chance to respond and even sometimes create controversy perhaps when there is none.

Unfortunately, my quote was taken out of context. As I told the reporter, I believe augmentative devices are very useful. It is the reason why I often recommend schools and parents utilize any devise that will give their children the opportunity to communicate their desires and equally important connect socially with their parents, brothers and sisters and friends.

However, it would be parents’ and professionals’ dream for their children to be able to communicate without augmentative devices, just as we would prefer for children to be able to be successful in school without needing an aide. Or we would prefer that a child would not need medication to control their behavior. But when this is not possible or if it is a lengthy process then anything that will help our children is a godsend!

I am concerned that in the world of Autism the expectations are woefully low and too often people settle for a prosthesis when a child could actually learn the skill. In our clinic we find among preschool age children about half of them already have functional speech even before treatment and this is consistent with what the research literature shows. The research also shows that of those remaining 50% who are nonverbal, the vast majority of them can develop meaningful speech with intensive early intervention and will not require AAC devices (or PECS, or sign language, etc.) either as a means or alternative to vocal speech. This has been our clinical experience as well. I encounter so many families who have been told to simply accept their child’s handicap and are discouraged from seeking treatment that could make an enormous difference in children’s lives. It’s amazing to see how excited people become over a new device and fail to recognize that the it might not be necessary.

We think children deserve to have the highest level of independence possible. If that turns out to be best achieved through use of state-of-the-art AAC, I am thrilled. But if a child could be talking and is not given the opportunity to access state-of-the-art education and treatment, I am greatly saddened.

Nothing I have said should detract from the joy of parents and accomplishments of children who really do need alternate modes of communication.

Regards,

Ronald Leaf
Autism Partnership

15 comments:

Anonymous said...

Ok..... Just from a parent point of view if it wasn't for the sign language support that my daughter received she wouldn't be talking now. My daughter still has severe difficulties with her speech requiring specialist educational provision. She still needs the visual support like signing and symbols to learn. But non verbally she is bright and at her specialist speech, language and communication school was the only child out of 11 in her year to sit her SATS.
She's also a brown belt in karate so can wop arse!!

But teaching her to sign when she was little, stopped her from getting frustrated and angry.

She was referred to a dietitian at 15mths due to feeding difficulties. 18mths stopped babbling. Referred to a speech therapist at about 2 yrs. Finally saw a speech therapist at about 2 and a half years. Only had a block of 6 sessions of 30 minute speech therapy. At 2 and a half years, we her parents got so sick of the NHS system found her a private speech therapist and together we learnt sign language. The next time she saw a nhs therapist was over a year later. We were promised a therapist who specialized in sign language, which never happened as she left, found out by reading my daughters notes as i can request them from the GP that my daughter was also promised PEC'S and that also never happened.

Got in to a specialized resourced nursery which was mainstream but had a speech therapist and the staff knew sign language.

Then we hit the jackpot,
http://www.royalfree.org.uk/default.aspx?top_nav_id=2&tab_id=15&sel_left_nav=20&news_id=224

That nomination that was quoted, it was from me. Four years later after that quote, i still think Hilary was the best therapist that my daughter ever had and i still think she should of won.

At the time my daughter went, there was only 11 other children, 2 full time speech therapists and it was a signing environment.

But now due to government cutbacks and local educational authorities saving money as it was expensive it has closed.

Col

Suzanne said...

Good morning, Dr. Rob! :)

I was pleasantly surprised to see your post about Dr. Leaf replying to your e-mail and clarifying his position. Thanks for sharing!

Christy said...

Of course it is preferable for a person to be able to express themselves without assistance IF that is possible.

The one thing that really struck me from your recent Purple Cow video is that Schuyler seemed annoyed by needed to stop what she was doing to input her thoughts into Pinkessa. Other kids could talk, color, roll their eyes, and say "buzz off, dad" all at the same time. Schuyler, rock star that she is, has got the eye roll down and it certainly conveys the "buzz off" when she wants it to, but the other stuff seems like an interruption. Of course if she could speak more clearly, that would be preferable. But thank God or technology or whoever, that she has a tool, a device, that will help her.

Thanks for sharing the response with us.

RobinSLP said...

It is so nice to see some back-and-forth dialogue about this article, but (sigh), he seems to miss the point as well as lacks some basic knowledge about COMMUNICATION vs. "talking." For the children he labels non-verbal who are able to "talk," how meaningful is the speech???? Is it all echoing or direct elicitation. Furthermore, if the child has a motor speech disorder, then we can certainly work on sounds. But the bottom line is that however many sounds a child can acquire, he/she still needs to form words and meaningful communication. In the communication hierarchy, communication comes before words, then sounds. You can't just jump to the top of that one. From what I have seen of Schuyler, she has developed some beautiful speech sounds that form words that are intelligible in context and to familiar listeners, but THEN you see her with her Vantage and WOW! How much more complex is her voice, conversation, language when using that device!? She is showing he full potential and if you had kept on solely with getting her to "talk" because you knew she could do some speech, then I would have never seen what an amazing force Schuyler is with her Pinkessa. I have worked with children labeled non-verbal and that have been placed in classes below their abilities. Once I have gotten these kids the Augcomm (from high-low tech) they needed, it was like dynamite and changed everything about their educations and in life. So, yeah, talking is great, but you have to get past 1) the meaningfulness of the communication 2) is the child communicating to full potential -That's why it is Augmentative communication, not replacement communication. what Dr. Leaf calls "gadgets" are too powerful to write off in favor of speech. And my last rambling thought is that yes, he is right in that it is great for children to have the ability to learn to verbally express themselves and I have seen this beautiful process. Let's not make any generalization that verbal expression is the only goal here, though. Dynamic assessment of where a child is at should show him where things need to go. Research has shown that any low-high tech augcomm stimulates language, so why take those supports away to try to make a child fly without wings before they are ready to take the dive. We can prop them up without reducing -and in fact increasing - their chances of being verbal - and let them fly when they are ready.
Robin

Niksmom said...

While I do appreciate that Dr. Leaf took the time to respond to you, doctor, I do think he still mised the point. Robin articulated it mch better than I could so I'll simply say "Yes, I agree with Robin!"

serene kitten said...

Sorry, Dr. Leaf. Even with this clarification, I'm still not convinced. I agree with Robin that he just doesn't quite get the point. And it looked like he was getting quite a bit of criticism in the comments section of that article even before Dr. Rob (hee) brought it to our attention. It sounds like the reporter helped to make things clear as mud.

Anonymous said...

Thanks for posting this.

News media's (USA Today) motivations are not the same as Dr. Leaf or parents. What do they care if a slant takes the general public to a perspective of rejecting assistive technology or narrowly accepting different verbal communication?

Similar issues arise around mobility technology. Use of a power wheelchair early can help a child toward walking - not the reverse - as well as prompt cognitive/perceptual growth and reduce frustation. Barbara

MS said...

I have to chime in with a "me too". I don't know that he's missed the boat, but I think that he may be trying to cloud the comment. Yes, USA Today distilled his quote. But, his response to you wasn't much better.
As I said, I work with the older kids who have had speech pathologists or teachers say, "He can talk! He doesn't need that!", when reality is that they aren't communicating. They are talking: they are saying, "I want" or no, or yes. But they aren't saying anything else. And that isn't communicating. We should encourage total communication: sign, vocalization, facial expression, pictures, eye gaze, AAC. ANYTHING that lets people communicate what they need to say.

Pia said...

Here here Robin!!! You articulated it much better than I did in the previous post, but the message is the same.

PRIORITIES!

Eyes on the prize! Communication is.. and should be.. the primary goal. Establish that, and let the rest come.

Oh, and parents don't necessarily get excited because they get a new fancy piece of technology. Parents get excited because they get a new fancy piece of technology THAT WORKS TO GET COMMUNICATION GOING. I promise you, if the child will not use it to communicate effectively, it will gather dust just like all the other unused things.

Parents are dying to have commuication to happen for their kids, and while ABA can and does work to help develop speech skills, it is highly TIME intensive and costly. Doesn't mean it still shouldn't be done, but when something is presented that opens up their childs world , they will be excited about that.

And they should be.

Pia

Karen said...

I may be reading this wrong, but as far as I can tell, Dr. Leaf did not use the word "gadgets". That was the word of the reporter, not a direct quote. It's a word that implies dismissiveness, and as such is rather insulting to many here and I totally agree with that response to it. But it wasn't Dr. Leaf who used it.

I think if we all go back and read JUST Dr. Leaf's letter in this post, and if we don't assume that he is against AAC devices as was implied in the article, we can find points on which he is saying the same thing others are.

#1: He recommends them to parents and schools. #2: It's his dream for all children to be able to "communicate" (not just talk) without them. #3: He's upset that schools and doctors are telling parents to give up on the child actually learning (just like what happened to Skyler in her old school).

As I read his response, I'm struck by the fact that the only major difference in his position and the position of most posters is that he believes that for some kids (but not all), there exists a real possiblity that if they are given an AAC device but not encouraged to try other therapies, their families will cease to work with them on other forms of communication. While that idea is very disturbing, I have to wonder how often it happens. So many parents of disabled kids are wonderful parents, struggling to do what is best for their child. But aren't the parents of the disabled just like everyone else? Some tall, some short, some fat, some thin, some exceptionally devoted to their kids... and maybe some who are just crappy parents? Maybe some who would do just what he fears and not bother with treatment because an AAC is so much easier on them?

I don't agree with him that it's a common occurance. But maybe I don't just because I can't stand to think of how crappy the world is if he's right.

Dr. Leaf, thanks for responding. I really, really hope you're wrong.

Samuel Sennott said...

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/

There are three key additional references listed there as well.

Unknown said...

While I understand your point of view but I have to agree with Dr. Leaf. I think it totally depends on a child and the child's condition. My daughter has mixed expressive/receptive disorder and we actually had to take the device away from her as she'd rather use it than try talking herself.She is talking but has problems with syntax. She can learn how to talk if she tries and we constantly work on her language (speech therapy). I know that if we would give her the device back she would gladly use it but at the same time it will hinder her speech development as it will provide an easy solution for her and since her personality is already hindering her progress (she always tries to take an easy way out and hates doing things that are hard for her, Ok, I will admit she is lazy:) Giving her the device right now would not be a wise solution for us since our goal is to teach her language, syntax and how to communicate on her own. Our biggest fear with giving her the device would be that she would stop trying to talk as it's much easier typing than trying to construct a sentence by herself. She is smart and she can learn how to talk. She just needs to work hard even though she might not want to do it.

Anonymous said...

I think we are all talking about different things.

1. If a child HAS the ability to speak using their own voice and people do not try to help them reach that goal, that isn't good.

I really think this is what Dr. Leaf is referring to with some of the children who have autism.

2. If you child is like mine, then they will NEVER be able to form a word or use their voice for anything besides babbling.

I do not think he is advocating not giving them the ability to communicate.

And yes, if my dauighter could speak I would move heaven and earth to give her that opportunity. But since she will not be able too, we use do everything we can to give her a voice using AAC or gestures or whatever it takes.

Just my 2 cents...

R.

Robert Hudson said...

All good points, R., but consider this. How do we know who does and does not have that capability? We can't go on the disability alone, because many, many nonverbal kids aren't diagnosed definitively. And if you didn't know Schuyler's diagnosis, for example, you would be CONVINCED that her lack of speech was a kind of delay, not the result of a neurological condition and a physical deformity of her brain.

So I think the big point of contention is the use of AAC to help kids who may very well develop speech down the road. AAC doesn't hinder that; it does the opposite.

For most kids, certainly the ones whose lack of speech is not due to a clear physical infirmity, no one can say for sure who will or won't be able to speak verbally until it happens. Waiting to find out would constitute a terrible, terrible mistake, in my opinion.

Anonymous said...

Thanks for commenting and posing the question Dr. Rob. 8)

I agree with you 100%. I know that if we didn't have a definitive diagnosis for my daughter, everyone would still be cautioning us to "give her time" and "wait and see". And we would be losing valuable time and she would be getting even more frustrated than she is currently. I don't think witholding AAC from those who could use it makes any sense at all.

When I read Dr. Leaf's response, I didn't seem to take away from it the message everyone else is. It may be because I am new to this debate (on whether to give or withhold AAC). Or maybe because I thought he was just saying, "If we had a magic wand, we'd want every child to speak with their own voice." I didn't think he seriously meant every child can and should and that is that.

Or am I being gullible?

R.