Stuttering and Concomitant Disorders: What to Tell Clients and Their Families

About the presenter: John A. Tetnowski, Ph.D., CCC-SLP, BRS/M:FD is the Ben Blanco/BoRSF Endowed Professors in Communicative Disorders at the University of Louisiana at Lafayette. He is a Board Recognized Fluency Specialist and Mentor and was the National Stuttering Associations's Speech-Language Pathologist of the Year in 2006. He is the Coordinator of the Ph.D. program in Applied Language and Speech Sciences at the University of Louisiana at Lafayette where he sits on the Graduate Council, teaches courses in fluency and research methods, and currently mentors four doctoral students specializing in stuttering. He has authored nearly 50 publications relating to stuttering, has worked clinically with people who stutter for over 20 years, and currently serves as the Chair of the National Stuttering Association's Research and Professional Relations Committees.

About the presenter: Jill Douglass is currently a second year doctoral student at the University of Louisiana at Lafayette. Her primary interest is stuttering under the advisement of Dr. John Tetnowski. She completed her master's degree and recently concluded her clinical fellowship year. She is an active member of the National Stuttering Association and has attended national conferences for NSA and FRIENDS.

Stuttering and concomitant disorders: What to tell clients and their families

by John A. Tetnowski & Jill E. Douglass (Louisiana, USA)

The timing for us to write this paper could not have been any better. As part of a doctoral seminar in assessing and treating fluency disorders, we are often asked to evaluate clients that are rarely "pure stutterers". We often see clients who come to us because they have failed miserably at meeting their personal goals in therapy, in school, at work, or in other situations. Just within the past week, we were reminded once more that stuttering rarely comes as a "pure disorder", when we were asked to evaluate a client who stuttered, but was also diagnosed as having a tic disorder. Prior clinical training and experience may not have prepared speech-language pathologists on how to evaluate and treat these complex cases, and how to advise the client and their family. Therefore, the purpose of this paper will be to provide some information on assessing and providing treatment for clients with stuttering and concomitant disorders. The paper will emphasize three main topics. They are (1) what is our general orientation towards assessment of fluency disorders and how to plan for intervention, (2) what is known in the literature about stuttering and concomitant disorders, and (3) how this knowledge can be practical in helping speech-language pathologists explain these factors to parents and their clients.

General orientation towards the assessment of fluency disorders and how to plan for intervention

In our minds, the most appropriate way to evaluate clients who present themselves for stuttering intervention is to complete a thorough evaluation that assesses: (a) the client's speech symptoms across many different levels of length, complexity, settings, and situations, (b) the client's attitudes and feelings about stuttering, (c) the client's history, that includes the time of onset and the progression of the disorder, (d) the clients ability to modify fluency, through a series of fluency induction tasks that includes attempts at fluency where they had previously broken down during the assessment. Techniques can include traditional fluency enhancing strategies such as prolonged speech, easy onset, etc., but can also include mechanical strategies such as DAF, FAF, etc. This step of the assessment process can help us decide where to begin fluency shaping, and help us decide whether this is even appropriate method of intervention for this client. This step can also help us decide whether fluency enhancement is so difficult that stuttering modification therapy would be more appropriate, and in some cases, whether fluency can ever be achieved, as in the case of organic disorders. This information is then synthesized to form the most thorough and comprehensive diagnosis and therapeutic plan. This evaluation strategy is consistent with other comprehensive evaluation models (e.g. Healey, Scott Trautman, & Susca, 2004; Gregory, Campbell, & Hill, 2003). It should also be noted that supplemental information is obtained through Ethnographic Interviewing techniques (Westby, 1990) that allow the interviewer to understand the issues through the mouth of the expert, that is, through the point of view of the client and their family. It allows the interviewer to take an open stance and see the stuttering as it affects the entire person, not just the individual views of the clinician. This technique is consistent within the role of social constructivism (Vygotsky, 1986) and this allows the clinician to plan goals that are appropriate for the client within their own social environment.

What is known about stuttering and concomitant disorders

First of all, we should all realize that seeing a person who stutters and has no other speech, language, learning, or other disorders is the exception to the rule. A survey by Blood and Seider in 1981 shows that 68% of people who stutter are reported to have some other speech, language, or learning disorder. A later study (Arndt & Healey, 2001) indicated that 44% of children who stutter simply have other concomitant articulation/phonology or language disorders. If this is indeed the case, a minority of the fluency cases that we see for assessment and intervention will present with stuttering and no other disorders. The influence of stuttering on these other disorders, or vice verse must be considered during the assessment if we are planning to meet the goals of our individual clients.

Several different studies have studied the phenomenon of stuttering and concomitant disorders. In a recent study of school children in Belgium, it was found that stuttering was almost four times more prevalent in children enrolled in special education programs (Van Borsel, Moeyaert, Mostaert, Rosseel, Van Loo, & Van Renterghem, 2006). If this is the case, we clearly are seeing many more children with differences and disorders that accompany stuttering, rather than the child who stutters and has no other learning, speech, language, emotional, neurogenic, or other disorder. A brief survey of the literature shows that fluency disorders are reported in no less than the following disorders, diseases, and differences:

ADHD (Healey & Reid, 2003)
Asperger syndrome (Tetnowski, Scaler Scott, Grossman, Abendroth, & Damico, 2007)
central auditory processing disorders (Anderson, Hood & Sellers, 1996)
cluttering (Myers & St. Louis, 1992)
Down syndrome (Schlanger & Gottsleben, 1957; nearly 45% prevalence)
Fragile X syndrome (Belser & Sudhalter, 2001)
literacy disorders (Blood, Ridenour, Qualls & Hammer, 2003)
Neurofibramatosis type I (Rondal, 2001)
"neurogenic stuttering" due to stroke, head trauma, extrapyramidal disease, tumor, dimensia or drug usage (DeNil, Jokel, & Rochon, 2007)
Moya-Moya disease (Dauer & Tetnowski, 2005)
Prader-Willi Syndrome (DeFloor, Van Borsel, & Curfs, 2000)
Tourette Syndrome (Van Borsel & Vanryckeghem, 2000)
Turner syndrome (Van Borsel, Dhooge, Verhoye, Derde, & Cuffs, 1999)

Clearly we must be aware of the potential intertwining of stuttering and the impact of other disorders, disease states or differences. If we are to truly meet the needs of our clients, we must weigh the impact and influence of concomitant disorders on stuttering and how stuttering has an impact on the concomitant disorder.

How this knowledge helps the SLP, clients and parents

Speech language pathologists are often the gatekeepers into therapy in general, but they also guide the type of intervention that clients and their families seek. Since it is apparent that so many clients who stutter have other concomitant disorders, the treatment plans for our clients must consider the needs, skills, and limitations of our clients. To simply say, I use fluency modification for all my clients, or I use Program X for all of my clients, is taking a simplistic and uninformed view of the individual. We say this with some trepidation, however, noting the efficacy studies that are reported in the literature specific to one treatment approach. Too often however, these reports include participants who stutter "that are free of any other major speech, language, learning, or neurogenic disorder". If we conduct our stuttering efficacy studies in this manner, we are leaving out a majority of the population in question. In order to serve these clients well, an in-depth assessment is necessary for each and every client prior to the onset of therapeutic intervention. In the section below are five tips for clinicians and five pieces of advice for clients and parents regarding the assessment of children with stuttering and concomitant disorders.

Tips for clinicians:

Always get multiple samples in multiple different situations at multiple levels of complexity. One of the hallmarks of stuttering is its inconsistency, however, if the levels of stuttering and the types of stuttering do not vary, you may suspect a motor or neurogenic cause of the stuttering.
Always attempt fluency induction tasks. There are multiple ways to induce fluency in almost all PWS. If you are unsuccessful at inducing fluency after many different techniques and trials, you may suspect something other than typical stuttering.
Ask the client how it feels to stutter. The client mentioned in the introduction of this piece was indeed diagnosed as having a tic disorder. She described her disfluencies as having a calming effect on her. She said that she felt better after letting the speech abnormalities ) come out. Although this may be the case for someone who is voluntarily stuttering, it is unusual to hear this from someone who has not had fluency therapy in the past.
Get a careful history from parents, family members, teachers and anyone else who can and will cooperate. Parents may not see behaviors clearly that are occurring in other situations. Teachers may not see typical conversation and interactions. SLPs may only see the children in structured settings. Compare results and findings from all possible sources.
Do not be afraid to refer. Have referral lists available for all potential hypotheses. Know which pediatricians will listen to your concerns, which neurologists will take the time to differentially diagnose a case, which psychiatrists are current with their knowledge of drug therapies in these areas, and which SLPs can actually treat the entire person.

Tips for clients and parents:

Consult an SLP who is skilled in the differential diagnosis of stuttering and related disorders. A good place to begin is with a Board Recognized Fluency Specialist (available at www.stutteringspecialists.org).
Ask the SLP about their philosophy on differential diagnosis of fluency disorders. Do they know the concomitant disorders that can exist with stuttering (and cluttering) and how to differentiate between them?
A 30-minute evaluation will not be sufficient for differential diagnosis of stuttering and concomitant disorders. The relationship is complex and will take longer than just collecting a small sample of speech.
Consult reliable sources. The internet is a valuable source of information, but also a source of marketing scams and false advertising. Anything that you can find on the web, should be verified through a refereed site, professional journals, or agreement by skilled professionals. Get the opinion and second opinions from as many sources as possible.
Connect with others who have gone through similar experiences. The self-help and support network for stuttering is getting stronger throughout the world. A good source of finding like-minded individuals is through self-help groups such as the National Stuttering Association (www.nsastutter.org), FRIENDS: The national association for young people who stutter (www.friendswhostutter.org), the International Stuttering Association (www.stutterisa.org). The Stuttering Homepage (www.stutteringhomepage.com) also provides links to most of these organizations.

The bottom line is that most of the fluency clients that we will see on our caseloads will have other disorders concomitant to stuttering. Following some of the steps mentioned above will likely increase the opportunities for accurate diagnosis and successful intervention.

References

Anderson, J.M., Hood, S.B., & Sellers, D.E. (1996). Central auditory processing abilities of adolescent and preadolescent stuttering and nonstuttering children. Journal of Fluency Disorders, 13, 199-214.

Arndt, J. & Healey, E.C. (2001). Concomitant disorders in school-age children who stutter. Language, Speech and Hearing Services in Schools, 32, 68-78.

Belser, R.C., & Sudhalter, V. (2001). Conversational characteristics of children with fragile X syndrome: repetitive speech. American Journal on Mental Retardation, 106, 28-38.

Blood, G. & Seider, R. (1981). The concomitant problems of young stutterers. Journal of Speech and Hearing Research, 46, 31-33.

Blood, G.W., Ridenour, V.J., Qualls, C.D., & Hammer, C.S. (2003). Co-occurring disorders in children who stutter. Journal of Communication Disorders, 36, 427-448.

Dauer, K. & Tetnowski, J.A. (2005). Stuttering and Moya-Moya Disease. Perspectives in Fluency Disorders, 15(2), 3-7.

Defloor, T., Van Borsel, J., & Curfs, L. (2000). Speech fluency in Prader-Willi syndrome. Journal of Fluency Disorders, 25, 85-98.

DeNil, L.F., Jokel, R., & Rochon, E. (2007). Etiology, symptomatology, and treatment of neurogenic stuttering. In E.G. Conture and R.F. Curlee (Eds.), Stuttering and related disorders of fluency (pp. 326-343). New York: Thieme Medical Publishers, Inc.

Gregory, H.H., Campbell, J.H., & Hill, D.G. (2003). Differential evaluation of stuttering problems. In H.H. Gregory, Stuttering therapy: Rationale and procedures (pp. 80-141). Boston: Allyn & Bacon.

Healey, E.C. & Reid, R. (2003). ADHD and stuttering: A tutorial. Journal of Fluency Disorders, 28, 2, 79-94.

Healey, E.C., Scott Trautman, L., & Susca, M. (2004). Clinical applications of a multidimensional approach for the assessment and treatment of stuttering. Contemporary Issues in Communication Disorders, 31, 40-48.

Myers, F. & St. Louis, K. (Eds.) (1992). Cluttering: A clinical perspective. San Diego, CA: Singular Publishing Group, Inc.

Rondal, J.A. (2001). Language in mental retardatio;: Individual and syndromic differences, and neurogenitic variation. Swiss Journal of Psychology, 60, 161-178.

Schlanger, B.B., & Gottsleben, R.H. (1957). Analysis of speech defects among the institutionalized mentally retarded. Journal of Speech and Hearing Disorders, 22, 98- 103.

Tetnowski, J.A., Scaler Scott, K, Grossman, H.L., Abendroth, K.J., & Damico, J.S. (2007). Asperger syndrome and ateention defecit disorder: Clinical disfluency analysis. Proceedings of the Fifth World Congress on Fluency and Fluency Disorders in Dublin, Ireland.

Van Borsel, J., Dhooge, I., Verhoye, K., Derde, K., & Curfs, L. (1999). Communication problems in Turner syndrome: A sample survey. Journal of Communication Disorders, 32, 435-446.

Van Borsel, J., & Vanryckeghem, M. (2000). Dysfluency and phonic tics in Tourette syndrome: A case report. Journal of Communication Disorders, 33, 227-240.

Vygotsky, L. (Rev. ed.) (1986). Thought and language (Alex Kozulin). Cambridge, MA: The MIT Press.

Westby, C. E. (1990). Ethnographic interviewing: Asking the right questions to the right people in the right ways. Journal of Childhood Communication Disorders, 13, 101-112.

submitted September 10, 2008