Early Intervention With Childhood Stuttering Revisited -- by Richard F. Curlee (USA) Thank you for your interest and participation in the Second International Stuttering Awareness Online Conference. The conference officially ended October 22, 1999.The papers and what is on the threaded discussions will remain at this address and you are welcome to read and/or copy them. The papers will be permanently archived on the Stuttering Home Page. However, the presenters have concluded their responsibilities for checking and answering any questions posted, so will not be responding here anymore. early intervention with childhood stuttering From: Susan Short Castleberry Date: 10/1/99 Time: 8:41:00 PM Remote Name: 220.127.116.11 Comments: Dr. Curlee, you state that most clinicians feel that every child should "receive treatment as soon as possible after stuttering begins". As a speech pathologist and parent of a teenager who stutterers, I have to question how you define beginning stuttering. I work in early intervention. It is not uncommon for me to be a first contact for parents who have concerns about stuttering in a preschool age child. When I interview the parent and the child and I notice no at-risk behavior, and if I can reassure the parent and give information so that they better understand normal, developmental non-fluency; then I feel satisfied that the child may not require immediate intervention. I always make sure the parent knows how to contact me should concerns arise. However, what if the presentation is not so benign? What if the parent shows concern that is not easily reassured or seeks counselling or intervention, or if I observe at-risk, struggle, behavior in the child? Is it ok for me to ignore these behaviors and assume the risk that chronic stuttering will develop? What would you do, Dr. Curlee, with a child I saw for the first time this week- a three year old who presents with rising pitch during multiple repetitions, loss of eye contact, occasional gasping for air. Is he at risk of developing a chronic stutter? Is he stuttering now? I suspect he is beginning to stutter, and I am wrestling with the issue of how to deal with parents who seem to resist involvement in his treatment. Perhaps there is not empirical support for treatment efficacy, but can I as a clinician ignore behaviors that signal risk? Sure, let's do what we can to determine effectiveness of interventions and to better understand normal, developmental patterns. But let's not put children and families at risk by adopting a "wait and see" approach. Re: early intervention with childhood stuttering From: Dick Curlee Date: 10/21/99 Time: 6:30:40 PM Remote Name: 18.104.22.168 Comments: I prefer a watch and see approach and have found, at least in my experience, that the severity of stuttering early after onset doesn't mean a child isn't going to stop without treatment. The recent JSLHR, for example, reported that the children in the Illinois longitudinal project who stopped without receiving therapy stuttered more severely when first seen than did those who did not stop. In addition, I am not familiar with any evidence that shows waiting to start therapy for 12-24 months post-onset adversely affects therapy. Perhaps you can provide me some references. bottom line From: Susan Short etc. Date: 10/22/99 Time: 7:22:42 AM Remote Name: 22.214.171.124 Comments: Others in this forum have responded convincingly to advocate for appropriate intervention and support for children and their families. For me the argument to "wait and see" is moot. I would hope that clinicians who are inexperienced or uneasy with stuttering in young children will refer families on to others who are comfortable weighing risk factors and offering supportive services. Early Intervention From: Mike Hughes, Ex. Dir., Speak Easy Inc. Date: 10/3/99 Time: 12:34:09 PM Remote Name: 126.96.36.199 Comments Dr. Curlee: Aha! The emperor wears no clothes! Based on the prevalent feeling, Speak Easy has "strongly" recommended immediate assessment by qualified SLP's whenever a parent feels that his child has begun to stutter. We frequently state that "early intervention has been proven to prevent or lessen the probability of childhood stuttering becoming an adult disability." While we will still present this statement, we've been somewhat concerned about the lack of empirical evidance for such a statement. In our monthly magazine, "Speaking Out," we attempt to present ALL reasonable approaches to stuttering. Would you be willing to write a short paper (500 - 2,000 words) to describe your thoughts on "early intervention"? We'd love to publish a thoughtful article that appears to resist the flow of current thought. You can contact us at firstname.lastname@example.org. Re: Early Intervention From: Dick Curlee Date: 10/21/99 Time: 6:42:54 PM Remote Name: 188.8.131.52 Comments I'm flattered by your invitation. If you're still interested after the first of the year, check with me at email@example.com Early Intervention for Stuttering From: Gail Lind, Educ.SLP Date: 10/4/99 Time: 9:19:07 AM Remote Name: 184.108.40.206 Comments In discussing early intervention for preschoolers and early elemtary children, what is a rough estimate for how long the dysfluency/stuttering should be apparent before a formal therapeutic approach is considered? Re: Early Intervention for Stuttering From: Dick Curlee Date: 10/21/99 Time: 6:40:03 PM Remote Name: 220.127.116.11 Comments Ms. Lind -- I apologize for not responding sooner. I just realized I hadn't addressed your question. As long as the parents feel comfortable delaying therapy, the child seldom if ever seems concerned or upset, and there are no other co-occurring speech- language problems, I feel comfortable monitoring the child's disfluencies for at least 12 months post-onset. During that period I believe I should see a substantial improvement in the child's fluency to continue monitoring. If I don't, I think nature may need some help and I should discuss therapy alternatives with the parents. Treatment From: Samantha DeLuca Date: 10/5/99 Time: 4:24:01 PM Remote Name: 18.104.22.168 Comments I have a question really, not a comment. I worked with a 3 1/2 year old boy over the summer addressing his deletion of initial consonants. After the 2 week vacation period, therapy resumed. He is now having difficulty speaking in fluently. He has a numerous amount of sound and word repetitions. I interviewed the parent and she stated, it just started out of the blue. Nothing at home seems to have precipitated it. I wanted to monitior his dysfluencies for a short period of time and then maybe address it in the future. Does this seem like the ethical/right thing to do? Just curious on your opinion. I might refer to another therapist that has more experience in fluency problems. Thank you for your time. Samantha DeLuca CCC- SLP Re: Treatment From: Dick Curlee Date: 10/7/99 Time: 3:54:31 PM Remote Name: 22.214.171.124 Comments Most children being seen in therapy for phonological or other language difficulties don't begin to stutter but it is not a rare occurrence, either. As you may know, there is an unusually high co- occurrence (e.g, 30-40%) of stuttering and other speech, language, or learning difficulties among school-age children. So, it's likely that some of these school-age children were showing signs of more than just one problem when they were preschoolers. Because I haven't seen a 30-40% co-morbidity of stuttering and these other problems in the preschoolers I've evaluated or seen in therapy, I have wondered if the co-occurrence of stuttering and other speech- language difficulties may indicate that a child is less likely to stop stuttering without treatment that a similar child who only stutters. Consequently, I usually see children who have co-occurring speech- language problems in therapy w/o delay and work on their fluency and other problem in therapy at the same time. My strategy is have the "other problem" determine what speech-language skills/behaviors we work on and the child's stuttering to determine the types of activities we use. For example, while looking at a book or pictures or playing some "game," we may work on the use of "is verbing" or "locative state" in which the child repeats the correct form after it is modeled by the clinician, using exagerated pitch changes to highlight the language target(s)and somewhat slower speech. What is said is relevant to what we're looking at or doing and includes the speech-language target. How the target is produced by the child is intended to eliminate or reduce stuttering to nearly zero. Most of the children I've seen can repeat these sorts of models w/o stuttering. Subsequent tasks, which gradually become more difficult, might be to display two pictures and, using the same type of speech, say "In this picture, the boy is swimming, but in this picture the girl_______," with the child completing the utterance while imitating how the clinician is talking. Other tasks may involve having the child say speech-language targets while whispering (quiet time), in unison with the clinician, etc., all of which are activities likely to be free of stuttering. I usually avoid working on phonemes in word- and utterance-initial positions, especially stops, because that's where most stutters occur. So, I usually use fluency-enhancing speech tasks in which the target phoneme occurs in medial or final positions of words or nonse syllabic chains. As the target form is produced correctly in highly structured activities, I gradually reduce the structure and move to increasingly more naturalistic speaking activities as the child's fluency and other speech-language skills permit. If you feel uncomfortable with the child you describe, I think you should consider helping the parents find someone who has worked with young preschool-age children a lot. I think is very important for children to have fun and enjoy what they do in therapy, because play is a young child's "learning activity" or "work". I believe also that children learn what they do, so if we can help a child do a lot of talking w/o stuttering while "playing and having fun," we're likely to have a successful outcome. And the best way I know to make sure that a child is having fun is by playing and having fun with the child in therapy. Hope you find some of this of help. Early Intervention with childhood stuttering From: Katie D'Amore Date: 10/6/99 Time: 9:36:54 AM Remote Name: 126.96.36.199 Comments I find it interesting that "the necessity of early childhood intervention" remains to lack accurate research and data. I personally believe it is better to treat than to not treat. However, this could overburden Speech Pathologists in the school system. How do you think future research finding on this matter might affect qualifications for therapy, especially in the public school system? Could the answer we find hurt us rather than help? Re: Early Intervention with childhood stuttering From: Dick Curlee Date: 10/7/99 Time: 5:55:44 PM Remote Name: 188.8.131.52 Comments I'm not sure if you are concerned that waiting 6-12 months to initiate therapy for 2-4 year-olds will increase the number of children who stutter in the schools or not. Such delays should not prevent such children from receiving therapy long before they begin school, so I doubt that the prevalence of stuttering in schools would change if careful, responsible monitoring of the child's speech is done during the delat to ensure he or she is improving and stuttering isn't getting worse. It is a shame that we do not have reliable data on the prevalence of stuttering in each grade, K-3, for the last 40 years or so, then we might be able to see if early intervention may have had an effect on the prevalence of stuttering in 5-9 year olds. I think the liklihood of untreated remissions drops over time, but I don't think this should be studied empirically. If I've missed the point of your question, ask it another way and I'll try to do a better job. types of verification From: Woody Starkweather Date: 10/7/99 Time: 3:30:24 PM Remote Name: 184.108.40.206 Comments Hi Dick: I don't think anyone can argue against your basic idea -- that we lack controlled studies of early intervention efficacy. But I would argue that we are never going to get them because (a) parents will be unwilling to have their children forego treatment, even temporarily, and (b) there is no way to construct a convincing placebo condition. But there are other kinds of verification. Skinner -- actually I think it was Sidman -- proposed another type. When a scientist sees a change that occurs immediately following the introduction of a condi- tion, he or she is legitimately impressed. And then, if the same change is seen repeatedly, to the point that the scientist feels the outcome can be predicted, the conclusion can be reached that the effect is real, even though control conditions, other than the preceding and following nontreat- ment periods, were not used. We see such things in early intervention. Once parents have been trained in how to modify the environment, and have implemented those changes, the child's stuttering behavior typically either disappears altogether or is dramatically reduced within a day or two. It happens to concomitantly to be a coincidence, and it happens often, although unfortunately it does not happen all the time. There is enough of this kind of effect that, when combined with the effects that are a little slower or a little less dramatic in extent, it is quite appropriately scientific to conclude that the treatment is efficacious, particularly when the same effects are reported in different clinics by different clinicians. I should comment too about your description of that emotional ASHA miniseminar, in which you and Dr. Yairi presented these views. I don't know why others were upset, but my reactions were not be- cause I felt that early intervention was sacrosanct. I was upset because Dr. Yairi made a number of mistatements of fact. I remember only one of them, however. It was that there was no credible evi- dence for the critical period of stuttering de- velopment. But Andrews and Harris' data show very clearly that there is such a critical period, and Dr. Yairi obviously considers their study credible because he cites it himself. It was that that raised my emotional level. Woody Starkweather Re: types of verification From: Dick Curlee Date: 10/7/99 Time: 6:34:34 PM Remote Name: 220.127.116.11 Comments Woody, thanks for commenting. I agree that it is highly unlikely that we can get an adequately controlled study of early intervention, not because enough parents wouldn't agree to delay therapy for some period but because they would not be from the same population of parents who would not be willing to delay. I base this on the high percentage of parents I have seen who have chosen that option over the past 5-10 years. I always give them the SFA Questions & Answers booklet, which you may consider as treatment, but the only thing I've done with the child is supervise assessing his stuttering. Another problem with studying those who agreed to delay would be allowing them to withdraw the child from the study, which they should do, if their child's stuttering worsened or continued at a severe level, which would make the group even less representative. At the same time, the findings obtained from this admittedly tainted group would be better than not having that data at all. I am also bothered, perhaps unnecessarily so, by recommending therapy for children who may not need it. It doesn't bother me to provide it if that is what parents wish as long as I don't recommend it. For me, providing unnecessary treatment is just as unethical as refusing to provide needed or necessary treatment, even though the former is likely to be more harmful than the latter. Both are wrong to me, the latter is just more wrong. Thanks, again, for your thoughful comment. Ethical Question From: Rebecca Hubbling and Kelly Birken Date: 10/7/99 Time: 4:42:23 PM Remote Name: 18.104.22.168 Comments We are two students currently enrolled in a graduate seminar stuttering course. We found your paper to be very informative. However, one issue came to mind upon reading your paper. We were wondering how you would deal with a parent who demanded treatment be started on their child, even though you believed it would be in the child's best interest to wait? This is an ethical issue and we were wondering how it would be handled. Re: Ethical Question From: Dick Curlee Date: 10/7/99 Time: 6:42:56 PM Remote Name: 22.214.171.124 Comments I always see children who are stuttering if their parents want them to be seen. I try not to discourage parents from early intervention, only inform them that there is another alternative available if they want to try it. I don't want to recommend therapy for anyone unless I believe they need it, and I believe that most of the children described in my article will stop stuttering w/o treatment. I just don't know which ones will and won't, so that's why I insist on monitoring if parents choose to delay. As I mentioned in my response to Woody Starkweather, I feel that recommending unnecessary treatment is wrong just as I believe refusing to treat someone who may need it is wrong. The latter is worse because it could result in harm to the patient, but both are wrong and unethical for me to do. Aspirin, anyone? From: Nan Ratner Date: 10/8/99 Time: 3:07:12 PM Remote Name: 126.96.36.199 Comments Dick, I agree that we don't have a good notion of how well stuttering therapy works in this young population, but do you think it does some good for some children? I ask this because if it does, I see no ethical dilemma in providing therapy when a problem may resolve itself at a later point. If therapy helps resolve it earlier, then it is beneficial. As I noted in another forum, headaches go away by themselves, too, but there is quite a legitimate market for aspirin. What are your thoughts on this? my very best regards, Nan Re: Aspirin, anyone? From: Dick Curlee Date: 10/8/99 Time: 5:44:16 PM Remote Name: 188.8.131.52 Comments Nan, I believe (but do not know) that therapy appears to help most young children. I believe and know that most young children who stutter stop within a year of onset. I believe and know that I can only guess which ones will stop and which ones wont. My problem is how I feel about recommending that a child receive therapy when I believe and know that, statistically, the child's odds are higher for not needing therapy than for needing it. Although there is no personal, financial conflict of interest in my making such recommendations at present, there is a personal conflict of interest related to having children come weekly and being used for observation, demonstration, training, and/or research. There is also the issue of recommending therapy that may not be needed and that may put unnecessary financial burdens on families and the effects such burdens may have on the family. It appears that I'm the lone ranger on this issue, but I feel that it is unethical for me (not you or the others who choose to refer) a child for treatment when the liklihood of the child not needing it is higher than his/her needing it. The aspirin for headaches analogy misses the mark, I think. How about weekly high colonics for locked bowels? Re: Aspirin, anyone? From: Woody Date: 10/17/99 Time: 11:28:32 AM Remote Name: 184.108.40.206 Comments But Dick, yes of course it would be better not to recommend therapy that is not needed, and in that sense, such a recommendation might be unethical. But in reality, as you said, you don't really know whether it is needed or not, because you can't know who will and who will not recover spontaneously. Therefore, when you recommend no therapy, because the odds are that the child will recover, you are at the same time incurring a risk that the person may go for a while without treat- ment, and the evidence is pretty clear that delay- ing treatment makes treatment more difficult, or at least take longer. So there is a possibly bad consequence to BOTH recommending therapy and to recommending no therapy. One has to balance the possibly unnecessary expense and effort of unnecessary treatment against the possibility that the child will become a chronic stutterer. It has always seemed to me that the latter possibility is so serious that it justified the other, milder risk. Woody Re: Aspirin, anyone? From: Dick Curlee Date: 10/21/99 Time: 3:10:03 PM Remote Name: 220.127.116.11 Comments Woody: I'm not familiar with any evidence showing that selective delays of 6-12 months post-onset has any effects on treatment. Re: Aspirin, anyone? From: Woody Date: 10/17/99 Time: 11:29:26 AM Remote Name: 18.104.22.168 Comments But Dick, yes of course it would be better not to recommend therapy that is not needed, and in that sense, such a recommendation might be unethical. But in reality, as you said, you don't really know whether it is needed or not, because you can't know who will and who will not recover spontaneously. Therefore, when you recommend no therapy, because the odds are that the child will recover, you are at the same time incurring a risk that the person may go for a while without treat- ment, and the evidence is pretty clear that delay- ing treatment makes treatment more difficult, or at least take longer. So there is a possibly bad consequence to BOTH recommending therapy and to recommending no therapy. One has to balance the possibly unnecessary expense and effort of unnecessary treatment against the possibility that the child will become a chronic stutterer. It has always seemed to me that the latter possibility is so serious that it justified the other, milder risk. Woody Early Intervention Comment/Question From: Elizabeth Ritchie Date: 10/9/99 Time: 11:01:56 AM Remote Name: 22.214.171.124 Comments Mr. Curlee - I enjoyed reading your article about early intervention. I do understand the importance of early intervention, however, I am currently working in the public schools as a speech therapist and often times, these children are not referred to us until kindergarten. Frequently, if the parents had some concern about thier child's stuttering in the preschool age, they were simply told the child would "grow out of it". (As we all have heard before.) Yes, some of the children may overcome the developmental disfluencies, but there are those that are true stutterers. How can we prevent these children from not being referred? As a school therapist, I am responsible for providing services to children as young as 3 years old. It is ashame that many parents and other professionals do not know this. Also, how do we make certain that a young child absolutely needs intervention? Are you looking for more severe disfluency patterns and secondary behaviors? Thank you for your time. Re: Early Intervention Comment/Question From: Dick Curlee Date: 10/9/99 Time: 8:51:03 PM Remote Name: 126.96.36.199 Comments I understand your concern; I've seen some "children" who have been stuttering since three or four years of age and whose parents are still waiting for them to "grow out of it." I think the single most important "danger sign" that stuttering is likely to continue unless therapy is begun is how long a child has been stuttering. Findings from the Univ. of Illinois study indicate that most untreated remissions occur within the first two years of onset and that almost all of those who do stop within two years w/o receiving therapy can be identified within 12 months of onset. Identifying them is based on careful assessments of their stutters every 2-3 months, because those who stop begin to show decreases in their stuttering during the first year after onset. I think the best way to prevent children from showing up at school after having stuttered more than a year is for parents to take any child who has stuttered longer than 2-3 months to a certfified speech-language pathologist who has extensive experience in working with children who stutter. As you may know, a large percentage of certified SLPs have reported in surveys that working with people who stutter is an area that they feel least capable or competent to handle. That's one of the reasons that ASHA's Special Interest Group on Fluency Disoders established a Specialty Commission on Fluency Disorders that is responsible for awarding Specialty Recognition in this area to applicants whose knowledge and experience in working with people who stutter qualify them for recognition. This is the first year that the Commission has been processing applications, but in time, it should become much easier for parents, less experienced SLPs, and other professionals to identify recognized specialists in fluency disorders in their community. Having children who stutter see specialists within a few months of onset is probably the best way to make sure that each child is handled in terms of his or her specific risks. For example, children with histories of chronic stuttering in their family trees, evidence lags in phonological development, and are male are at higher risk for continuing to suttter than girls with no phonological lags or family history of chronic stuttering. A chapter I wrote for the 2nd edition of Stuttering & Related Disorders of Fluency describes how I evaluate children who stutter and the guidelines I use in assessing a child's risk for continuing to stutter. I hope that you may find some of this of help. A nagging worry From: Michelle Lincoln Date: 10/10/99 Time: 9:13:43 AM Remote Name: 188.8.131.52 Comments Hi Dick While I agree with you that in some cases it is a good idea to postpone treatment for stuttering in preschool children because they have a reasonable chance of recovery I have a nagging worry. We don't know what impact stuttering for 12-24 months has on the child's socio-emotional development, language development, self esteem, confidence etc and whether these are short or long-term effects. If treatments are available that can avoid the development of these types of problems why not emplot them. Arguably this is done with other disorder groups e.g. artic or phonology when it is likely also that they might recover. If research showed that spending your preschool years stuttering had no effect on any of the things mentioned above I would feel alot more comfortable about with holding treatment. What do you think about this? Do you lose sleep over this one? Regards Michelle Lincoln Re: A nagging worry From: Dick Curlee Date: 10/14/99 Time: 6:02:28 PM Remote Name: 184.108.40.206 Comments No, I don't lose sleep over the worries you apparently have. I worry more about my having encouraged parents to spend time and money doing something that is more likely to be unnecessary than necessary. There is also no evidence that children seen in successful therapy don't have their self-image as a normal child undermined and that children whose therapy is unsuccessful usually have their self-esteem irreparably damaged. I don't worry or lose sleep about either of these. In the absense of credible evidence the harm of 12- 24 month delays and psychological side-effects of therapy are similarly plausible. I don't think you should worry about either until there is reason (i.e., some evidence) to worry, but I appreciate your concern. And on the other side of the garden wall... From: firstname.lastname@example.org Date: 10/14/99 Time: 1:22:31 PM Remote Name: 220.127.116.11 Comments Interesting discussion. It's an old argument, and one driven by a kind of intellectual prissiness that really doesn't have much application beyond academe. The proposal that therapy should not be offered to all at-risk kids because of the chance of involving a lot of kids who don't need it has a tone of "Don't just do something, stand there!" to it. If speech therapy in the absence of true need were something that had genuinely deleterious effects, that would be one thing. It is not chemotherapy, though. An overdose won't kill you, render you infertile, or make your hair fall out. If a kid spends a few months in therapy and then stops stuttering for whatever reason, no harm is done. If he doesn't spend a few months in thearpy, and continues to stutter to the point that it becomes deeply habituated, then real harm is done. The quibbles about whether to wait for two or three months or or to take the child right into therapy are also an empty intellectual exercise. What are the estimates of how long before a child begins to stutter and the parents' decision to seek help? Probably two or three months have already elapsed before the parent decides to seek help, so in reality most kids who are asked to wait two or three months have in fact been made to wait four to six months at least. But of course we really don't know, do we. Analogy is weak argument, but it is often good illustration. Imagine a waterfall, and a high cliff that overlooks the waterfall. The place is a minor tourist attraction, and a thousand people a year go stand on the cliff to admire the tumbling water. Five percent of those people, fifty souls, are foolhardy enough to lean too far over the edge, lose their balance, and tumble into the whirlpool at the base of the waterfall. Of those fifty, thirty-five manage to struggle to the surface and scramble back up on the bank, shaken, wet, cold, scared silly, maybe with a broken bone or two, but alive. The other fifteen drown and their corpses are washed out to sea. Now shift scenes. The township tourism committee is considering putting a rail along the cliff far enough back to keep the fifty expected causalties from falling over the edge. However, a committee of concerned scientists augmented by a few civil libertarians (who bathed for the occasion) says that the railing is too expensive. Since people sometimes climb over railings, its efficacy is doubtful. Besides, in the committee's considered and honest judgment it is unethical to put up such a railing because there is no way to predict in advance who is likely to fall and so the ability of the others to view the waterfall unhindered should not be curtailed. I'd love to see the media coverage of such a debate. I just can't buy the proposal that providing a noninvasive and relatively harmless intervention to kids who might not need it is a worse ethical decision than withholding that same intervention from the unidentifiable minority who do need it. That is not the same thing as suggesting that efficacy assessment should not be an ongoing project, or that therapy should be dispensed willy-nilly. But given the current state of our knowledge about the etiology of stuttering, who among us is going to take seriously a proposal that our best preventative measures, crude though they be, should be withheld until we have uncontrovertable proof of their success and a way to separate kids according to their need? That person truly has a heart of stone. Lou Heite Re: And on the other side of the garden wall... From: Dick Curlee Date: 10/14/99 Time: 6:12:58 PM Remote Name: 18.104.22.168 Comments Thanks for taking the time to express the opinions of a true believer. I suppose it's prissy to say it, but I think disagreement is healthy until there is conclusive evidence. Re: And on the other side of the garden wall... From: email@example.com Date: 10/15/99 Time: 10:51:25 AM Remote Name: 22.214.171.124 Comments Dr Curlee: Yes, disagreement is the rich soil that might some day produce results, if it doesn't rot the roots of the ideas that are planted in it. However, mixing metaphors, "true belief" is a glass apartment house with many chambers, and one had best be careful when tossing pebbles. In the absence of proof, all belief is "true belief." You have stated yourself that it is unlikely that we will ever be able to assemble incontrovertable proof of the efficacy, or lack thereof, of early intervention. From your reply to Woody Starkweather somewhere up above in this discussion, I quote: " I agree that it is highly unlikely that we can get an adequately controlled study of early intervention, not because enough parents wouldn't agree to delay therapy for some period but because they would not be from the same population of parents who would not be willing to delay." It really doesn't matter what the reason is for the lack of proof, the proof isn't there. Assemble the proof, and I shall be happy to embrace your position or something like it. But in the meantime, there are some kids who will grow up and become stutterers while academicians are sitting around lamenting the lack of a proper controlled study. Those kids are not abstractions. They are the people who will have to live with the results of a decision not to intervene for a year or two, because some beancounting school administrator has read somewhere that some experts are not sure of the efficacy of early intervention and recommend waiting a couple of years. Those children will pay the cost of your belief, not you. Each child at risk has a window of time in which therapy will be most effective. Their lives march forward under the unbendable cadence of time, whether they are among the minority who become chronic stutterers or not. The ones who may become stutterers cannot wait until those for whom their very human problem is primarily a scientific puzzle decide that the solution has been found. Dressing inaction up in a lab coat and calling it science does nothing for these children. It also does nothing for science. My true belief is probably dismissible by some as smarmy liberalism, though I prefer to think of it as humanistic activism. Your true belief is equally dismissible as icy scientificism, though I am guessing that you prefer to think of it as intellectual rigor or something along those lines. Both courses are valid, but I don't think that they are equally defensible. So far all you have raised is a sensible caution against crowing in triumph over the defeat of early stuttering. You have not provided a sufficiently rigorous reason to withhold therapy from those who show signs of needing it. Moreover, by your own admission, you probably never will. Maybe early intervention doesn't work. Maybe it does. Neither outcome has been proven. Certainly neither late intervention nor no intervention works very well, because if they did this conference wouldn't be happening. So, weighing the _certainty_ that some kids will become chronic adult stutterers without intervention or with late intervention, against the _possibility_ that most if not all of those kids will not become stutters with early intervention, I would prefer to err on the side of the children - even while hoping for proof one way or the other. LH Early Intervention From: Mary Ahlers SLP Date: 10/15/99 Time: 10:59:18 AM Remote Name: 126.96.36.199 Comments It has been my experience that it is often beneficial to delay enrolling a preschool aged child in speech therapy for stuttering. Many times when parents are given simple directives for helping the child at home, and these techniques are carried out throughout the child's environment (grandparents, child care people, etc.), direct speech therapy services are not always required. Sometimes focusing in on the family's hectic schedules and/or things going on at home, can help in alleviating speech problems. I feel it is our professional responsibility to look at all areas before automatically placing children in services. Re: Early Intervention From: Woody Starkweather Date: 10/17/99 Time: 11:42:09 AM Remote Name: 188.8.131.52 Comments This is a very good point. A small delay does very little, if any, harm, and it is possible while waiting a month or two, to inform the parents about ways they make the environment more conduc- ive to the development of normal fluency. One of the fascinating byways of our data on early intervention at Temple was that about ten per cent of the parents who called us were SLP's. We routinely listen during the first phone call to the parents' complaint/description, give them some hasty advice, and send them a pamphlet on how to change the environ- ment. It isn't therapy, but it is something. What we found was that in the case of the parents who were SLP's, nearly all of the children stopped stuttering even before their first appointment. Of course, the training in speech pathology made a difference, and there may have been other factors. But I believe that in many cases, particularly when parents are well educated, it doesn't take very much inter- vention to produce change. Woody Starkweather Re: Early Intervention From: Dick Curlee Date: 10/19/99 Time: 5:50:26 PM Remote Name: 184.108.40.206 Comments Believe it or not, Woody, I agree with you! Re: Early Intervention From: Dick Curlee Date: 10/19/99 Time: 5:47:58 PM Remote Name: 220.127.116.11 Comments I have had many similar experiences, although I'm seldom sure what changes parents actually make. The important thing is the child stops stuttering for whatever reason. Thanks for your comments. Dr. Curlee From: Jerry Johnson Date: 10/17/99 Time: 8:39:30 PM Remote Name: 18.104.22.168 Comments Lets duke this out on the playing field of the frustrated, emotional, tearful, and cries of help from the parents of children who "stutter." I dont give a damn how an SLP, much less a "researcher" who cant see the trees for the forest, DEFINES beginning stuttering. Parents are a pretty good judge of their children and to be turned away into the darkness of night is unconscionable. Information on a continuing basis for parents is a must, and "therapy" for these children can take many many forms. Lets buy some time for these people through direct contact on a continuing basis. And for the cost factor: whats wrong with FREE? Try it some time it is very liberating. Anyway, a person who works withing the university setting, whose salary is paid by the taxpayer, should be providing some free service anyway. So be it. Take the advice of Lou Heite and the world will be a better place. Re: Dr. Curlee From: Dick Curlee Date: 10/19/99 Time: 5:56:55 PM Remote Name: 22.214.171.124 Comments I was surprised that you feel so knowledgeable about me; I was not aware we had met. Re: Dr. Curlee From: Jerry Johnson Date: 10/20/99 Time: 2:45:02 PM Remote Name: 126.96.36.199 Comments Doggone it anyway. I tried to get a rise, but you are too fast for me. A chuckle is worth a thousand words. Seriously, your studies have done much to understand the underlying facets of stuttering. Keep up the good work. A middle ground? From: J. Scott Yaruss Date: 10/18/99 Time: 11:19:01 AM Remote Name: 188.8.131.52 Comments Hi all...An interesting discussion -- this forum is a nice way of exchanging ideas without getting TOO hot and bothered about it (though it seems that the discussion has approached that threshold in some posts). In any case, I'm wondering if there's a middle ground to this debate. I understand and agree with the concerns raised by Dr. Curlee regarding providing unnecessary treatment. My clinic is run through a traditional health-care setting (Children's Hospital) where payment issues are real and faced by parents and clinicians alike every day. Nearly every time we recommend therapy, the insurance company denies payment and the parents are forced with a difficult decision. (For some reason, when I worked through a University clinic, there was never any question...insurance wasn't going to pay so the parents did pay...now that I'm in a hospital, they expect insurance to pay, which it doesn't, so the kids end up not getting the treatment...I don't understand this, but it is a point for another thread.) The bottom line is, even though our treatment at the hospital costs no more than most University Clinic treatments, we need to be VERY sure that we don't recommend unnecessary treatment because of the real expenses involved. Many families can't afford treatment, and I can't feel comfortable recommending that they waste their money. ON THE OTHER HAND...I don't know for sure if they would be wasting their money. We don't have the data indicating which children will recover. (And, I maintain that it is essentially impossible to collect such data since. Aside from the arguments raised by Drs. Curlee and Starkweather about the difficulties of this type of research, we have additional problems. Put simply, we can't easily assess the child's fluency without also making some sort of impact on the ultimate outcome. Furthermore, I believe that the ultimate outcome is affected by factors that occur throughout the child's development, not just his initial status at the time of evaluation...therefore, no matter how detailed our original analysis is, I don't think we can use that information to extrapolate the child's ultimate outcome without additional information collected at multiple points throughout the child's early development.) Therefore, once I have collected all the data, I must go with something that amounts to a data-driven, theory-driven, but ultimately gut-level decision about whether treatment seems indicated. I make the presentation to the parents about what their options are, and then I make a recommendation about what I would do if it were my child (and my older daughter has had significant fluency concerns, so I think I can understand a little bit where the parents are coming from). It's still their decision of course, and I make that clear. Also, I explain to them the "risk" that the child will get better on his/her own at that all of this will be for naught -- Still, I feel an obligation to make a recommendation, knowing full well that I might be wrong. So...where's the middle ground? Simply this. I don't see the issue as one of recommending therapy or not recommending therapy. I see it as one of DEGREE of intervention. Regardless of the outcome of the evaluation, I am going to recommend some sort of intervention. Sometimes, if the child appears to be on the right track toward natural recovery from stuttering, the intervention takes the form of nothing more than informal counseling with the parents about what danger signs to watch for and when to contact me if the child's stuttering appears to be persisting (this is probably akin to the traditional "no treatment" option, though I provide detailed input to parents, and I FOLLOW-UP about 4 weeks later and then again after that to make sure the child is recovering.) One the other extreme, if the child is clearly at risk (due to factors such as family history of persistent stuttering, presence of co- occurring disorder, or something else, such as extreme concern on the part of the parents or child), then I will recomment a more direct form of intervention, including both the parent counseling mentioned above and treatment with the child. This is akin to the traditional "yes treatment" recommendation. But what about in the middle -- of course, that is where most of the kids tend to fall. A child who has some risk factors, perhaps, some apparent stuttering, perhaps, but no clear signs either way of which way things are going to go. Now, I have a problem -- I don't want to recommend no therapy, because I saw something there that concerned me and I don't just want to "wait and see." Plus, and even more importantly, the parents themselves were concerned, and this is enough reason to spend more time on the problem and recommend some type of intervention. BUT, is it really the CHILD who needs the invervention? Not always, and many times no. If I'm not sure which way the child is going to go, I use a third recommendation category that involves, primarily, parent training and counseling, but also some work with the child. Like the first option mentioned above, talking about danger signs to look for, etc, including ample opportunities for parents to discuss their concerns about the child's fluency and to begin to process some of their fears. Also, we spend a lot of time on training parents to make modifications to their own communication (if warranted) that can stack the deck in the child's favor...help him be as fluent and successful a communicator as possible. Help him maintain or develop healthy attitudes toward his developing speaking abilities (a la Logan & Yaruss, 1999 in CICSD), and the like. A lot of this also involves working with the child, but not for the sake of directly treating the child -- more for the sake of training the parents. We use a wireless microphone receiver system with which the parents can interact with the child while we observe from behind a mirror and provide suggestions and training about how they can facilitate the child's fluency, just like we train student clinicians to do. Together, this "parent training" package is a form of intervention that is not direct therapy with the child (which, as we said, might not be necessary). What it does is it gives the parents a way to help, while keeping us in the loop, and begins the process of treatment in a less direct way than the traditional "yes treatment" recommendation. The trick to using all of this as a middle ground is that it is FINITE in duration. Four to six sessions -- a two to three-hundred dollar investment, to shift to the bottom line. Not pocket change, to be sure, but not open-ended, long-term treatment that might not ultimately be necessary. The parents get trained and we observe the child for longer (now we've seen him for several sessions, not just the initial evaluation). Now, if the child gets better, the parents know what to look for and what to do if he flares up again. Some money may have been wasted, but then again, the parent involvement in treatment might have contributed to the child's recovery (and I think this is likely -- if not the fact of the recovery, at least the timing of the recovery). Plus, we've helped the parents feel better along the way -- an accomplishment that is far from trivial. If the child doesn't get better, then we've already begun the treatment process and no money or time is wasted. We didn't do a "wait and see" -- we did more of a "watch and see" -- a critical difference, IMHO. Whew! This was longer than I expected...I'll be talking about this approach at ASHA in at least 2 presentations. First, the SID Short Course with Bill Murphy and Ken Logan (we'll focus on techniques for improving fluency and attitudes in young children who stutter) and also in a talk with Dave Hammer, my co-director at the Stuttering Center who formalized the parent training program. We'll talk a bit about the diagnostic issues but then spend more time on the actual training of the parents. As always, the usual caveats apply...I didn't make this stuff up on my own (I stole it from lots of other people). There are many clinicians who view the issue this way, and have made valuable contributions to the development of my thinking (including Drs. Curlee & Starkweather)...I just felt moved to write about it this time... Thanks for listening, and sorry about the length. S (Note: this diagnostic approach is different from that described in a paper my colleagues and I published in AJSLP last year, which used more traditional "no treatment, re-evaluation, and treatment" categories...Opinions change, no?) Re: A middle ground? From: Dick Curlee Date: 10/21/99 Time: 6:22:47 PM Remote Name: 184.108.40.206 Comments Gee, Scott, I thought that's where I am! I enjoyed reading your comments regardless of where we stand. Re: A middle ground? From: Scott Yaruss Date: 10/22/99 Time: 8:59:36 AM Remote Name: 220.127.116.11 Comments Hi Dick Hmmm...told you I stole most of my stuff from you folks. Still, I hadn't seen any explicit recommendation for a set course of parent counseling in your comments. Yes, I know you give parents information about stuttering prior to allowing them to make the decision about treatment. BUT, are you training them to make changes at home that are BELIEVED (not necessarily proven) to facilitate fluency? Are you providing an extended period of time for them to explore their concerns in the presence of a clinician? I had not gotten this impression from your writings. I guess I was hearing more of a "treat / no-treat" dichotomy, left in the parent's hands. Can you elaborate on your middle ground? S PS: If we all say we're recommending the same thing, then where's the controversy? Feelings and Attitudes From: Erin Davis Date: 10/18/99 Time: 12:43:26 PM Remote Name: 18.104.22.168 Comments Dr. Curlee, from my perspective as a graduate student of speech- language pathology, your paper presents an alternate viewpoint. Much of the information I have encountered advocates the need for early intervention due in part to the feelings and attitudes of the young stutterer. I am interested in your opinion on the impact early intervention would have on eliminating the anxiety that contributes to the secondary characteristics oftentimes associated with stuttering. Re: Feelings and Attitudes From: Dick Curlee Date: 10/19/99 Time: 6:46:20 PM Remote Name: 22.214.171.124 Comments Ms. Davis: Most of the children from 2 to 4 years of age who stutter I have seen do not appear to be bothered about their stuttering and those who are seem to be upset only at the time they're having a lot of trouble talking because of their stuttering. In addition, I usually see the appearance of tension, effortful speech and other accessory behaviors before the child appears anxious or expresses ideas or attitudes about being unable to say things. If a child is evidencing such attitudes or feelings about talking, I wouldn't tell the parents it would be OK to delay therapy, because I think those ideas and feelings are likely to make the child's stuttering worse and perhaps even lead to other problems. I can understand your concern even though most of the children I've seen in this age group who have not been stuttering long seem to be relatively oblivious to their stutters. Suggested Protocol? From: Judy Butler Date: 10/18/99 Time: 8:13:24 PM Remote Name: 126.96.36.199 Comments Dr. Curlee, Thank you for this paper because it generated a discussion in which I was interested. I am an SLP in private practice. I have been using recommendations by Zebrowski in her 1997 article in AJSLP Vol 6 pp 19-27 "Assisting Young Children Who Stutter and Their Families: Defining the Role of the Speech Language Pathologist" when determining if and how often to "treat" a preschooler with disfluent speech. I take a monthly audiotaped speech sample of these children to monitor their fluency over time. In the last paragraph of your article, you recommended collecting scientific data. I am up to the challenge of collecting data long term on my young clients. Can you recommend a protocol for doing so? Re: Suggested Protocol? From: Dick Curlee Date: 10/21/99 Time: 3:47:20 PM Remote Name: 188.8.131.52 Comments Ms. Butler-- If you'll give me your address, I'll be glad to mail you a handout I use for class. Early Intervention From: Shari Seal Date: 10/19/99 Time: 7:06:44 PM Remote Name: 184.108.40.206 Comments For a child who is 4 years old, it is continually recommended to provide parental suggestions and re-evaluate in 6 months. When the child returns, pre and post data reveals improvements. The data denotes that the child still demonstrates atypical characteristics, which are indicative of an individual who stutters, but an increase in fluency is evident. What should be recommended at the time? Are there any definite flags to suggest when therapy should be initiated? Re: Early Intervention From: Dick Curlee Date: 10/21/99 Time: 3:58:46 PM Remote Name: 220.127.116.11 Comments I try to monitor changes in children's disfluencies over shorter intervals [e.g., 2-3 months] and as long as the child's fluency is increasing, I feel that watchful waiting is "working." I always make sure, however, that the parent believes what I'm recording is typical of the child's speech most of the time. It's been my experience that when stuttering stops, it usually decreases somewhat irregularly over an extended period of time, but 12-24 months after onset, stutters occur VERY infrequently, if at all, according to parents. Assuming your description is a real child, I would feel comfortable watching another three months anyhow. Appropriate interventions From: Brenda Harguth Date: 10/20/99 Time: 4:34:48 PM Remote Name: 18.104.22.168 Comments I have been working with a 6 year old stuttering client for two years. She is unaware of her stuttering. We have been using the indirect therapy approach. She can be very fluent during therapy, but is much more disfluent in other environments. Would it be appropriate to make her aware of her stuttering for therapy purposes or continue with a more indirect approach? I would hate to make her anxious about her speech. Re: Appropriate interventions From: Dick Curlee Date: 10/21/99 Time: 6:19:41 PM Remote Name: 22.214.171.124 Comments Although most children appear to generalize fluency gains spontaneously from therapy to outside settings, some don't. If a child isn't generalizing spontaneously, I have parents, over family members living in the home, and "best" friends participate in therapy activities with the child. Sometimes this stimulates generalization. Next, I might ask parents to engage in the same sorts of activities at home for 10-15 minutes and bring me a recording so I can evaluate what was done and its success. I have even scheduled therapy at children's homes for a few weeks to see if that seems to make a difference. In general, the more similar the setting, the activities, and the speaking tasks in therapy are to those the child engages in normally, the more likely generalization will occur. In terms of calling attention to stuttering, I think that it's important for positive comments and praise of stutter-free segments to greatly outnumber comments on stutters. As a result you need to be engaged in a talking activity in which the child stutters very infrequently. The Lidcombe Program, for example, recommends a 10-11 to 1 ratio of fluency to stutter feedback. Even then some children may react negatively to stuttering feedback, which means it needs to decrease or stop, at least for awhile. If you think you would like to try something like that, you can download descriptions of how to do it from a website liked to their home page. Hope some of these ideas may help. Early Intervention... From: Pamela L. Brophy Date: 10/21/99 Time: 11:31:36 AM Remote Name: 126.96.36.199 Comments I have never felt it was essential to work with pre-school age stutterers. To me, you look at severity, parental concern, the child's awareness level, etc. Re: Early Intervention... From: Dick Curlee Date: 10/21/99 Time: 4:02:30 PM Remote Name: 188.8.131.52 Comments I also like to look at how long a child has stuttered and if his/her stuttering is decreasing. If it hasn't changed noticeably for the better after 12-15 months post-onset, I begin to believe that something should be done to help nature. To treat or not? From: Amy Ogburn Date: 10/21/99 Time: 10:15:22 PM Remote Name: 184.108.40.206 Comments Dr. Curlee, I found your article to be very informative. Currently, I am in graduate school and I have a 3 1/2 year old client who stutters. His disfluency has significantly reduced since treatment began, however his family is extremely motivated. I believe early intervention can be a positive experience, however in some cases it might not be cost effective. Re: To treat or not? From: Dick Curlee Date: 10/22/99 Time: 1:05:13 PM Remote Name: 220.127.116.11 Comments Ms. Ogburn -- I agree that early treatment may be a very positive experience and I suspect that it is seldom harmful. My concern is that we do not have yet to gather the kind of support needed to know if or how much more effective it is to intervene as soon as possible after onset. This failure undermines efforts to obtain insurance coverage for families who cannot afford therapy and the credibility of our work as a profession. It's as if we don't recognize that our good intentions and personal experiences as clinicians are not enough to support our beliefs.