ANNOTATIONManagement of childhood stutteringMark Onslow .docx

ANNOTATION
Management of childhood stuttering
Mark Onslow and Sue O’Brian
Australian Stuttering Research Centre, The University of
Sydney, Sydney, New South Wales, Australia
Abstract: Stuttering is a speech disorder that begins during the
first years of life and is among the most prevalent of
developmental disorders.
It appears to be a problem with neural processing of speech
involving genetics. Onset typically occurs during the first years
of life, shortly after
language development begins. Clinical presentation during
childhood is interrupted and effortful speech production, often
with rapid onset. If
not corrected during early childhood, it becomes intractable and
can cause psychological, social, educational and occupational
problems. There
is evidence from replicated clinical trials to support early
intervention during the pre-school years. Meta-analysis of
studies indicates that children
who receive early intervention during the pre-school years are
7.7 times more likely to have resolution of their stuttering.
Early intervention is
recommended with a speech pathologist. Some children who
begin to stutter will recover without such intervention.
However, the number of
such recoveries is currently not known, and it is not possible to
predict which children are likely to recover naturally.
Consequently, the current

best practice is for speech pathologists to monitor children for
signs of natural recovery for up to 1 year before beginning
treatment.
Key words: diagnosis; management; paediatrics; stuttering;
treatment.
Stuttering
Stuttering, also known as stammering in the United Kingdom,
is a speech disorder that begins during the first years of life. A
recent community cohort study of 1619 Australian children
recruited at 8 months old found that 8.5% had begun to
stutter by 3 years of age.1 The shape of the cumulative inci-
dence plot suggests that more cases will emerge as the cohort
is studied further. Onset was found to be essentially unpre-
dictable, with only 3.7% of cases explainable with case
history variables such as advanced language development,
twinning and maternal education level. A report of 3 to
17-year-olds derived from the United States National Health
Interview Surveys (n = 95,132) showed stuttering to be the
equal third most prevalent developmental disorder from
among nine, which included attention-deficit/hyperactivity
disorder, autism, cerebral palsy and learning disability.2 The
reported prevalence was 1.6%.
The cause of stuttering is currently unknown; however, brain
imaging data suggest that it involves a problem with neural
processing of speech,3 linked to structural and functional
anomalies at brain sites responsible for spoken language.4,5 As
these anomalies have only been investigated with school chil-
dren and adults, it is unclear whether they are a cause or an
effect of the disorder. There is genetic involvement in
stuttering,
with clear evidence of vertical transmission within families.6

Around two thirds of those affected, or their parents, report a
family history. There is greater monozygotic concordance than
dizygotic concordance, which offers a genetic account of around
70% of cases.7 At present, genetic linkage studies can account
for less than one tenth of cases; however, exome sequencing
technology has yet to be applied to the study of the disorder.
The clinical presentation of chronic stuttering in adolescence
and adulthood is interrupted speech production. Symptoms
include repetitions of sounds and words, periods when speech
appears to be blocked, and excessive prolongation of sounds or
words. These features are often accompanied by extraneous,
effortful-sounding noises, and facial movements somewhat
resembling tics. The latter extraneous movements during speech
can extend to the arms and torso. The speech output of those
affected is greatly reduced, with severe cases being able to say
only a quarter as much as their peers or requiring four times as
long to say as much as their peers. Chronic stuttering is associ-
ated with clinical levels of social anxiety, with social phobia
reported for 40–60% of clinical cases.8–10 However, it is clear
that anxiety does not cause the problem. A lifetime of stuttering
can cause significant quality-of-life impairment. Adults with
chronic stuttering often fail to attain occupational potential,11
as employers can believe that those who stutter are less
Key Points
• Stuttering is a speech disorder with genetic involvement that
begins during the first years of life and is among the most
prevalent of developmental disorders.
• Early intervention shortly after onset during the pre-school
years is recommended.

• If not corrected during early childhood, stuttering becomes
intractable and can cause psychological, social, educational
and occupational problems.
Correspondence: Professor Mark Onslow, Faculty of Health
Sciences,
The University of Sydney, PO Box 170, Lidcombe, NSW 1825,
Australia.
Fax: +61 2 9351 9392; email: [email protected]
Declaration of conflict of interest: None declared.
Accepted for publication 1 May 2012.
doi:10.1111/jpc.12034
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Journal of Paediatrics and Child Health 49 (2013) E112–E115
© 2012 The Authors
Journal of Paediatrics and Child Health © 2012 Paediatrics and
Child Health Division (Royal Australasian College of
Physicians)
E112
employable and promotable.12 A linear relationship between
stuttering severity and educational attainment has been
reported.13
Clinical Presentation During
Early Childhood
Speech pathologists are responsible for the treatment of stut-

tering. In North America, they are known as speech-language
pathologists, and in the United Kingdom as speech and lan-
guage therapists. The most common presentation of early stut-
tering to a medical practitioner is soon after onset, most
commonly when the child is aged between 2 and 5 years. That
clinical presentation is often prompted by the distressing nature
of early stuttering to parents. Unlike other speech problems,
such as poor articulation or delayed language development,
stuttering appears unexpectedly after a period of normal and
uneventful speech development. It can start quite suddenly
when children begin to form simple sentences. Around half of
the cases appear within a period of 1–3 days and a third of the
cases during a single day.1,14 The severe symptoms described
previously can occur soon after onset.15 There is a general con-
sensus that the most common early sign of stuttering is repeti-
tions of sounds and words, followed by the development of
more disabling symptoms.1,16
Diagnosis of early stuttering in pre-schoolers is rarely difficult.
Its speech disturbances are distinctive from the normal dysflu-
encies and hesitations of early language development. Parents
typically initiate referrals and are rarely mistaken in their belief
that a child has begun to stutter. A recent longitudinal study1
showed no evidence of co-morbid speech, language or reading
problems close to onset. Rare diagnostic confusion may occur
with tic syndromes of early childhood. In severe cases, early
stuttering may appear to be neurological in nature. Cases of
stuttering during the school years (7–12) are less likely to
present to medical clinics, as parents typically seek speech
pathology intervention rather than medical advice.
The Effects of Stuttering During Childhood
Stuttering may cause distress to young children shortly after
onset.14 Peers recognise stuttered speech17 and may react nega-

tively to it.18 Negative attitudes to communication have been
measured in stuttering children as young as 3–6 years old.19
These signs of negative social conditioning are likely to be the
origins of the relationship between stuttering and anxiety later
in life. However, to date, no report has documented frank signs
of clinical anxiety in pre-school children.
There is also limited evidence of clinical anxiety in school
children, with only one report showing even a suggestion of
heightened anxiety levels in stuttering children aged 9–12,20
while a report of 9 to 14-year-old children showed no effects at
all.21 It is the case, however, that for these school children, the
negative social conditioning connected with stuttering intensi-
fies. From 7 years onwards, negative attitudes to communica-
tion worsen for stuttering children.22,23 Bullying is associated
with anxiety later in life, and school-age children who stutter
are bullied more often than their peers.24 Their peers have a
negative perception of them,25 and this appears linked to prob-
lems forming relationships.26
Treatment of Childhood Stuttering
It is challenging to treat chronic stuttering during adolescence
and adulthood. Speech rehabilitation at that time of life is labo-
rious, costly and relapse prone. Additionally, concomitant treat-
ment for anxiety is frequently necessary. Clearly, then, effective
childhood intervention is desirable in order to obviate the need
for speech or anxiety treatment later in life.
To date, the best evidence for childhood stuttering treatment
lies with a conceptually simple operant procedure conducted
by parents, with supervision from a speech pathologist. This
treatment is known as the Lidcombe Program and is available
world-wide.27 A treatment guide and brochures for parents are

downloadable from the web site of the Australian Stuttering
Research Centre.28 Parents use operant conditioning principles,
such as praise for periods when their child does not stutter, and
occasionally request their child to self-correct an utterance con-
taining stuttering. Parents also measure the child’s stuttering
severity each day with a simple scale to ensure that the child
progresses to a target of no stuttering or almost no stuttering.
When that target is attained, a maintenance phase of treatment
for around 1 year is implemented to reduce the chance of
relapse, which is known to occur.29
The efficacy of the Lidcombe Program has been demonstrated
with a series of Phase I, Phase II and Phase III clinical trials.30
To date, there have been two successful Phase III randomised
controlled trials of the treatment with a no-treatment control
group: one with New Zealand pre-schoolers and one with
German pre-schoolers.31,32 A meta-analysis (n = 136) of Lid-
combe Program clinical trials and short exposure experiments
showed an odds ratio of 7.7.30 There is evidence that children
successfully treated with this method in clinical trials are able
to
produce speech that is perceptually normal.33 Of interest in
cases where parents do not have access to standard speech
pathology services is a randomised Phase II trial showing the
treatment to be efficacious in a telehealth format.34 However,
those results show that the treatment time to attain no stutter-
ing or almost no stuttering with a low-tech telehealth format is
much longer than the median of 16 h with the standard for-
mat.35 At the time of writing, a clinical trial is under way to
determine whether that problem can be solved with modern
webcam technology.
There are two other treatments for early childhood stuttering
that are in earlier phases of clinical trial development than is
the

Lidcombe Program. One of these, being developed in the United
Kingdom, is a family-based treatment that seeks to alleviate
stressors within the child’s daily environment that are thought
to be responsible for a child’s continued stuttering. Such stres-
sors include a generally hurried life-style, a rapid speech rate
and having unrealistic developmental language expectations of
the child. Two non-randomised Phase I trials have been pub-
lished to date,36,37 with not particularly encouraging results,
showing overall 65% stuttering reductions.
Another recent treatment development for early stuttering,
occurring in Australia, is based on the well-known fact that
when adults who stutter speak with each syllable in time to a
rhythm, they stop stuttering, only to resume stuttering when
they stop speaking in that manner. However, three non-
randomised trials38–40 have shown that the effects of such
Management of childhood stutteringM Onslow and S O’Brian
© 2012 The Authors
Physicians)
E113
rhythmic speech may be more permanent with early stuttering.
The latter of those reports suggested that stuttering reduction of
96% may be attainable with this method.
When to Treat Childhood Stuttering
Considering the problems with chronic stuttering later in life,

early childhood is the best time for treatment. In light of the
evidence outlined earlier that social anxiety problems with stut-
tering may well begin during the school years, intervention
shortly after onset before beginning school is recommended.
That recommendation is supported by clinical trials data which
suggest that stuttering is clinically less tractable and relapse
following treatment is more likely during the school years than
the pre-school years.41,42
A challenge for speech pathologists is that some pre-school
children who begin to stutter will recover naturally by adult-
hood without formal treatment. There are many methodologi-
cal problems with estimating the number, but there is a
prevailing belief that it is in the range of 70–80%. A critical
review placed the natural recovery rate from childhood to ado-
lescence at 30–50%.43 The challenge here for speech patholo-
gists is to consider the need for early intervention against the
chance of early natural recovery. The accepted best practice is
for speech pathologists to monitor pre-school stuttering children
for signs of natural recovery for no longer than 1 year before
intervening. It appears that less than 5% of children will recover
naturally during that period.44 Immediate treatment is recom-
mended in cases where a child is showing signs of social
distress
or avoidance. This may occur in response to negative peer
reactions to stuttering. An overarching clinical guideline is that
treatment at least needs to have begun before the child reaches
5 years of age.
Summary
Stuttering is one of the most prevalent developmental disorders
of early childhood. It can appear suddenly after a period of
normal speech and language development. It is known to
involve genetics and is currently thought to be a problem with
neural processing of speech. Effective early intervention from a

speech pathologist is critical to avoid long-term quality-of-life
problems, which may include educational and occupational
limitations and mental health problems. There is a good reason
to believe that such mental health problems may begin shortly
after onset during the pre-school years. There is replicated,
randomised, clinical evidence for effective early intervention.
Many children may recover without intervention, but the exact
number is not known, and it is not possible to know which
children will recover. The best practice is for speech
pathologists
to monitor children for signs of natural recovery for up to 1
year
before beginning treatment.
Multiple Choice Questions
1. Stuttering is a
A. Non-genetic disorder
B. A disorder caused by psychological problems
C. A speech disorder
D. Now known with certainty to be a problem with neural
speech processing
E. A language disorder
A is incorrect, because there is evidence of genetic involvement
in stuttering.
B is incorrect, because anxiety occurs after onset and does not
cause stuttering.
C is correct, because current evidence suggests it to be a
problem
with neural speech processing.
D is incorrect, because current evidence suggests, rather than
proves, that to be the case.
E is incorrect, because stuttering is a speech disorder.
2. The recommended treatment practice is to

A. Always delay intervention for 1 year after onset, in the
hope that natural recovery will occur
B. Intervene after monitoring for natural recovery for up to
1 year
C. Reassure parents that the disorder is innocuous
D. Consider genetic testing
E. Refer for psychological assessment
A is incorrect, because the accepted best practice is to delay
intervention for up to 1 year after onset, unless the disorder is
causing excessive distress to the child or family.
B is correct, because this is the current recommended best
practice.
C is incorrect, because the disorder is not innocuous; if it
persists and becomes intractable, it may impair the quality of
life.
D is incorrect, because genetic testing is not necessary for
diagnosis.
E is incorrect, because psychological problems develop only if
stuttering persists during the pre-school years.
3. Diagnosis of stuttering in pre-school children
A. Can be difficult, because it is indistinguishable from tics
B. Can be difficult, because it is difficult to distinguish from
the normal hesitations and dysfluencies of language
development
C. Can be difficult, because it is a psychological problem
D. Is rarely difficult, because parents are usually correct in
their report of stuttering onset
E. Is rarely difficult, because early stuttering is always severe

soon after onset
A is incorrect, because stuttering only somewhat resembles tics.
B is incorrect, because it is easy to distinguish from these
aspects
of normal language development.
C is incorrect, because it is a speech problem, and
psychological
problems do not emerge until later in life.
D is correct, because parents are rarely mistaken about this.
E is incorrect, because stuttering symptoms are severe soon
after
onset only in some cases.
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Management of childhood stutteringM Onslow and S O’Brian
© 2012 The Authors
Physicians)
E115
Psychosocial Impact of Living with a
Stuttering Disorder: Knowing Is Not
Enough
Janet Beilby, Ph.D.1
ABSTRACT
Stuttering requires a multidimensional perspective given that, in
recent years, researchers have shown the impact of the disorder
to reach far
beyond the surface components with demonstrated psychosocial

and
anxiety effects for the individual living with a stutter. This
article explores
the impact a stuttering disorder has onthe individual (child,
adolescent, and
adult) and on their family members (siblings, parents, and
partners). These
experiences include behavioral and social difficulties, self-
awareness,
reactions to stuttering, communication difficulties in daily
situations,
and overall quality of life. The influence of stuttering on the
most intimate
relationships of the person who stutters is presented. An
overview of
stuttering across the life span is discussed in terms of stuttering
in children
and adolescents, and the significant levels of adverse impact as
a result of
living with a stutter are described. In addition, the impact that
the
stuttering disorder has on the parents and siblings of children
who stutter
is also detailed through significant findings pertaining to lack
of attachment
and trust between the young people and their parents. The
responsibilities
and demands on parents and siblings in the family context are
highlighted.
Focus is also placed on the experience of living with a person
who stutters
from the perspective of their life partner. Perceived quality of
life is explored
with unexpected differences recounted between the quality of
life experi-
enced by the adult who stutters and their partner’s perceptions

of this
disorder. Finally, the potential for a novel Acceptance and
Commitment
Therapy for individuals who stutter is presented.
KEYWORDS: Stuttering, psychosocial, parents, siblings,
partners,
quality of life, ACT
1School of Psychology and Speech Pathology, Curtin
University, Perth, Western Australia, Australia.
Address for correspondence: Janet Beilby, Ph.D.,
School of Psychology and Speech Pathology, Curtin Uni-
versity, GPO Box U 1987, Perth, 6845 Western Australia,
Australia (e-mail: [email protected]).
Brain, Temperament, and Behavior: New Approaches
to Understanding Fluency Disorders; Guest Editor, Vivian
Sisskin, M.S., F-ASHA
Semin Speech Lang 2014;35:132–143. Copyright # 2014
by Thieme Medical Publishers, Inc., 333 Seventh Avenue,
New York, NY 10001, USA. Tel: +1(212) 584-4662.
DOI: http://dx.doi.org/10.1055/s-0034-1371756.
ISSN 0734-0478.
132
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Learning Outcomes: As a result of this activity, the reader will
be able to (1) describe the reactions and
speaking experiences of children and adolescents who stutter
compared with those who do not stutter; (2)
recall that the impact of the disorder of stuttering is not related
to the degree of severity; (3) discuss clinical
outcomes including more realistic goals such as some stuttered
speech and acceptance of “normal” reactions
to speaking include reasonable levels of concern; (4) express
how the quality of the sibling relationship differs
when there is a sibling in the family who stutters; (5) identify
how the parent-child relationship is impacted
upon by the consequences of living with the stutter over time;
(6) recall the themes that partners of adults
who stutter share with their loved one while appreciating
different quality of life perspectives; (7) define the

potential for Acceptance and Commitment Therapy for
individuals who stutter.
STUTTERING AS A
MULTIDIMENSIONAL DISORDER
Presumably, everyone who reads this special
edition of Seminars in Speech and Language finds
stuttering to be an intriguing disorder. It is well
known that stuttering has been described as a
speech motor disorder that interrupts the tim-
ing and/or coordination between the respirato-
ry, laryngeal, and vocal tract subsystems of
speech.1–6 However, other authors have de-
scribed the cognitive, linguistic, and psycholin-
guistic components of the disorder that can
influence a person’s overall communicative
competence.7,8 The pervasive nature of stutter-
ing defies a uniform definition, however, be-
cause stuttering includes core surface speech
elements, such as repetitions, prolongations,
and cessations of sounds interwoven with ele-
ments that exist below the surface. Such covert
or affective components include stress, anxiety,
and negative reactions to speaking in general.
These layers of difficulty often manifest in
significantly reduced quality of life for the
person who lives with a stutter on a daily
basis.9,10
Many clinical researchers have noted there
is more to the stuttering disorder than just the
surface features.10–19 Historically, Sheehan de-
scribed stuttering using an “iceberg” analogy in
which the speaker’s experience of the stuttering
disorder is represented as the region “under the

surface.”15 The nature of stuttering has the
potential to elicit ridicule, embarrassment,
frustration, and/or pity from the listener;
therefore, it is inevitable that it is associated
with some degree of fear, anxiety, and/or
frustration in the person who stutters.20–23
Researchers and clinicians have argued for a
more expansive model of stuttering, which
presents not only the surface behaviors in an
individual’s speech but also the psychosocial
impact or consequences stuttering has on their
life.19,24–28
This concept of looking at stuttering from a
layered perspective appealed to the group of
clinicians who work in the largest stuttering
treatment clinic in Western Australia—the
Curtin Stuttering Treatment Clinic at Curtin
University in Perth. This is a specialized com-
munity-based clinic established for over 30 years
as a student training facility. It embraces the life
span of stuttering, treating toddlers through
senior citizens. Since inception, the clinic has
treated over 8,000 clients and presently there
are three concurrent clinics managing over 50
clients per week.
Clients and their family are involved in
individualized therapy tailored to their specific
fluency needs. In addition to individual treat-
ment sessions, groups for school-aged children,
adolescents, and adults are run in afternoon and
evening sessions with holistic psychosocial and
fluency objectives underpinning each group.

The parents, siblings, and partners accompany
the person to their treatments at various times,
and there are support groups conducted for
these family members as well.
The specialized nature of the clinic means
that often clients with concomitant difficulties
or complex, long-standing communication
needs are referred on by other clinicians. Given
the diverse range and complexity of the fluency
difficulties with which we work, the concept
and necessity of seeing beyond the stutter and
managing more of the psychosocial issues
evolved naturally for all of us working in the
clinic. We undertook research that had a direct
bearing on the clinical initiatives we were
PSYCHOSOCIAL IMPACT OF LIVING WITH A
STUTTERING DISORDER/BEILBY 133
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incorporating into our daily practice, and this
involved two primary fundamental principles:
1. If we are going to claim to support all aspects
of a stuttering disorder, a holistic therapeutic
model to treat stuttering is necessary. There
needs to be a designated benefit in assimilat-
ing fluency techniques at the same time as
the psychosocial impact and consequences of
stuttering are managed.
2. If we are going to administer truly efficacious
therapy, we also need to address the influ-
ence that stuttering has not only on the
individuals but on their family members as
well. The most important emotional unit to
which we belong, and the one that affects the
course and outcome of our lives the most, is
our family. Recent clinical research has
shown that it is imperative to understand
how the impact of a disorder, and responsi-
bility for its treatment, is distributed among
the entire family unit and all the members
therein.
As our esteemed colleague Willie Botterill
from the Michael Palin Centre wrote before she
retired, no single component of the family can
be understood in isolation from the others.
Ultimately, the whole family, not just the
isolated individual with the disorder, is de-
scribed as the most accurate and correct defini-
tion of “client.”29

THE IMPACT OF STUTTERING ON
SCHOOL-AGED CHILDREN AND
ADOLESCENTS
To begin, we wanted to gain deeper insight
regarding the effects living with a stutter has on
our school-aged children and adolescents alike.
Parental reports have indicated that children
who stutter are aware of their stuttering shortly
after its onset, and thus social interaction can be
impaired from an early age.30,31 Children who
stutter have been found to experience more
negative attitudes toward speech than those
who are normally fluent, even as young as 3
and 4 years of age, and these negative attitudes
appear to worsen with age and stuttering
severity.32–37
To date, research has not delineated the
nature or extent of the negative impact that
stuttered speech has on the vulnerable school-
aged and adolescent age groups. This age
bracket has been described in health research
as “invisible” as these children and teens are
significantly at risk for mental health prob-
lems. Themes that have emerged in qualita-
tive mental health research with such young
people include those of secrecy, not wanting
to talk to adults, very strong emotional feel-
ings, and the conflicting need and desire for
time to themselves or with other young peo-
ple, but not with parents, teachers, or
counsellors.38
Thus, we wanted to know the ways in
which negative experiences toward speaking
affect school-aged children and adolescents

and in terms of trajectory when these reactions
emerge developmentally. In addition, we
wanted to know if these experiences were
unique to young people who stutter. These
ages represent times of change in young people’s
lives, and it is not necessarily clear which aspects
of the experience of stuttering are unique to
stuttering and which are perhaps just part of
growing up and learning to communicate with
others. We chose to examine in detail the
reactions and experiences of children and ado-
lescents (n ¼ 95) who stutter, directly compar-
ing them to a matched control group of young
people who do not stutter (n ¼ 95).39 The
findings are more fully explored in two articles
that I have written with my clinical research
team.38,39
What we know about the experiences of
young people who stutter, and why this is
important in their treatment:
� These young people experience a reduced
quality of life compared with their fluent
peers.
� These young people are hurting because of
their speech difficulties—particularly the
adolescents.
� They experience greater adverse impact on
their lives than do their fluent peers—par-
ticularly in their social interactions.
� They have greater concerns about speaking
and magnified affective, behavioral, and

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cognitive reactions to speaking and signifi-
cantly compromised communication in daily
situations.
� There is a significant association between
stuttered speech frequency and self-aware-
ness and knowledge of their stuttering ex-
perience (as measured by the Overall
Assessment of Speakers’ Experience of
Stuttering—Standard Interview40) for
children.
� But, interestingly, there is no significant
correlation between stuttered speech fre-

quency and other sections of the Overall
Assessment of Speakers’ Experience of Stut-
tering—Standard Interview for adolescents.
That is, as the child gets older, adverse
impact is not determined by overt speech
disruptions.38,41,42
� The traditional surface severity of the young
person’s stuttered speech does not indicate
how much they may be struggling with the
impact of the disorder. The surface picture is
potentially misleading—those who present
as “mild” may well be suffering as much or
more than those whose stuttered speech is
more noticeable and visible.
� An important clinical implication emerged
from the finding that young people who
were fluent also had some degree of negative
reaction to their speaking ability. Many
people have unfavorable impressions of their
speaking ability. Thus, the goal of therapy
addressing negative reactions to stuttering
does not necessarily need to seek an outcome
of “zero negative reactions” to be successful.
Helping a child achieve “normal” reactions
(which may include some low level of con-
cern about speaking) may be a more reason-
able outcome.
� Finally, inclusion of strategies for managing
the psychosocial impact of stuttering as well
as the stutter per se in a holistic approach to
the treatment of young people who stutter
appears to be imperative in setting up thera-
py goals. Clinical assessment regarding

young peoples’ attitudes toward their com-
munication is a priority and psychosocial
support to reduce anxiety levels and negative
expectancies are equally important as strate-
gies for fluent speech.
SIBLINGS
It was evident in the families who attend the
Curtin Stuttering Treatment Clinic that within
the family constellation, the closest person to
the individual who stutters is often their sibling.
It has been suggested that the emotional ties
between siblings are second only to those
between children and their parents and that
these sibling relationships are unique in terms
of their power and vitality in the child’s well-
being and development.43 Despite these find-
ings, the impact of stuttering and stuttering
therapy on the siblings of a child who stutters
and the subsequent quality of the sibling rela-
tionship had previously not been thoroughly
explored.
It has been suggested by Bank and Kahn
that siblings follow a particular relationship life
cycle.44 In early childhood, they provide a
constant source of companionship; during the
school years, they extend themselves to others
external to the family; and during adolescence,
siblings demonstrate ambivalence regarding
their relationship but still confide in and advise
each other to a considerable extent.45 Siblings,
in general, share the majority of time with each
other, especially during childhood, and often
greater time with each other than with their

parents.46
Barr and colleagues explored the experien-
ces and impact that a speech impairment had on
siblings in the context of a family-centered
practice therapy.47 When others were present,
the sibling tended to interpret and speak for the
child with the speech impairment to protect
them from being misunderstood and potentially
embarrassed. Siblings described personal diffi-
culties, including jealousy and concern about
their sibling with the speech impairment. Posi-
tive features, however, were also described by
these siblings, including such attributes as in-
creased maturity and insight, tolerance, pride,
advocacy, loyalty, strength, and resilience.48
Thus, we were interested to know siblings’
perspectives on the impact of stuttering on their
sibling, on their parents, and on themselves. In
addition, we wanted to know their views on the
therapy being administered. In our 2012
study,49 we enlisted (n ¼ 12) sibling dyads
and their parents where one child in the dyad
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stuttered plus matched control (n ¼ 12) sibling
dyads and their parents where both siblings
were fluent, for a total of 96 participants.
What we found and the clinical implica-
tions for siblings of young people who stutter:
� Fluent siblings exhibited strong emotions
regarding their sibling who stutters—both
positive and negative. The emotions de-
scribed by the fluent sibling appeared inde-
pendent of the stuttering severity ratings of
their siblings, with children with mild stut-
tering generating the same reactions as those
with severe stuttered speech.
� Three-quarters of the siblings reported that
they had discussed stuttering with their
parents, but only one child explained that
their feelings and impressions about stutter-
ing had been sought. Thus, stuttering had
not been discussed with the vast majority of
the siblings. The discussions with parents
focused on ways to help the child who
stutters, but the fluent sibling’s insights
and potential difficulties were not

addressed.
� Children who stutter and their siblings
demonstrated significantly greater closeness,
and concurrently, increased conflict and
status disparity, than did the fluent sibling
dyads.
� Parents also demonstrated significantly
greater partiality toward their children
who stutter. No consistent partiality was
found in the families of fluent children.
� Fluent siblings reported being frustrated by
the child who stutters, but also being upset
when they were bullied or teased by others.
� Half of the siblings often served as protec-
tion for the child who stuttered and identi-
fied this as a positive role with the potential
to educate others.
� Two-thirds of the fluent siblings were in-
volved in the therapy as a natural by-product
of sharing more conversational interactions
with the stuttering child than any other
family members. Again, this was described
as a positive and constructive role.
� Some siblings attributed their importance in
the therapy program to their perception that
they were “looked up to” by the child who
stutters.
� The majority of siblings reported a desire to
be more involved in the therapy process than

they currently were.
� Family-centered interventions are useful
and effective, but such dependence on pa-
rents-as-clinicians may produce increased
pressure in the home.47,50 This is particular-
ly important given that parent stress levels
have been found to be a strong predictor of
sibling adjustment difficulties.50
� Awareness and education regarding the
potential impact of stuttering on the sib-
ling relationship is imperative in successful
and positive therapy. A better understand-
ing of the impact of stuttering on siblings
may lead to a healthier integration of the
entire family in the treatment process and
even enhanced support from siblings in the
clinical process.
PARENTS
The most complex partnership of all is that of
the child who stutters and their parents. In our
team discussions regarding this area of research,
an impression that emerged consistently was
that there are parents who can definitely be
identified early in the therapeutic process as
having great positive potential to work with the
child’s stutter. On the other hand, there are
those who undoubtedly bring challenges to this
process as well. We wanted to understand more
clearly the methods underpinning different
parenting styles, so that we could better equip
ourselves to work with different styles of par-
enting and to potentially modify our practices

and procedures to accommodate these differ-
ences across families.
Previous research in stuttering disorders
has emphasized facets of parent-child attach-
ment such as communicative styles of the
parent, their speech characteristics, their atti-
tudes, and their knowledge of stuttering. But,
knowledge of the impact of stuttering on pa-
rents has been limited by a lack of empirical
investigation. As Yairi and Ambrose stated in
2005, the “continuous influence of stuttering . . .
on the child’s family has largely been overlooked
by investigators.”51 Therapy traditionally has
focused on what the parent can do to help their
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child rather than on the crisis created for the
family by the child who stutters.
School-aged children between the ages of 6
and 12 years old have unique psychosocial,
affective, and behavioral developmental pat-
terns that set them aside from preschoolers
and adolescents. They are bridged between
the two. Moving toward adolescence, they
show increasing independence from their pa-
rents at the same time as an increasing depen-
dence on their peers for social, emotional, and
academic support.52 School-aged children also
demonstrate preliminary notions about their
sense of self and personal identity in a growing
awareness of future socialization. Consequent-
ly, the disruptive nature of stuttering may
hamper the way young people engage in and
practice social discourse.53 The growing de-
mands placed on the school-aged child for
increasing adultlike social competence can ex-
acerbate communication anxiety.54
Therefore, the quality of the parent-child
relationship plays an increasingly important
role in providing the child with models of social
competence, coping strategies, and motivation
in life.
Evidence from psychology and psychiatry
has suggested that optimal parenting equips
children with effective social adjustment and
coping resilience.55–57 Securely attached chil-
dren are more enthusiastic and have better
problem-solving skills than others without

the same degree of attachment with their
parents.58
Our study aimed to examine whether
measures of parenting styles, parent and peer
attachment patterns, and parent- and self-re-
ported child behavior could differentiate
school-aged children who stuttered from their
fluent peers.59 In the light of such previous
findings in other disciplines, the question re-
volved around whether distinctive parenting
styles and resultant unique parent-child attach-
ment patterns existed for a population of
school-aged children and their parents com-
pared with their fluent peers and their parents.
The goal was not to look for blame or respon-
sibility in the parent-child relationships, but
rather to explore the impact that stuttering has
on important family processes. From our clini-
cal waiting list for treatment, school-aged chil-
dren who stutter (n ¼ 10) and their parents
(n ¼ 20) were compared with matched control
normally fluent (n ¼ 10) children and their
parents (n ¼ 20).59
� In terms of parenting styles, there were no
significant differences found between the
parents of children who stutter and the
parents of normally fluent children. The
separate evaluation of particular parenting
styles of mothers and fathers also yielded no
statistically significant results.
� Parents of children who stutter rated these
children as showing significantly more be-

havior difficulties than their normally fluent
children.
� Children who stutter rated their parents
with significantly lower parental attachment
than fluent children did for their parents.
� Children who stutter perceived their parents
with significantly lower parental trust than
did their fluent peers. Such findings are
consistent with the possibility that the con-
tinued experience with stuttering over time
impacts on the quality of the relationship
between a parent and their child.
� The majority of children who stutter re-
ported frustration with the manner in which
their parents attempted to manage their
stuttering episodes.
� Young people who stutter reported frustra-
tion not only with the ways their parents
attempted to shape their fluency but also
with how the parents disclosed information
regarding their stuttering. There was general
consensus that the child would have pre-
ferred more autonomy in these decision-
making processes.
� The majority of children who stutter re-
ported that their friends were aware of the
stutter, but were not unduly concerned by it.
They also reported friends who helped them
with their speech, and appreciation of these
attempts to help manage their fluency. This
is in contrast to the aggravation these same

children expressed when reflecting on their
parents’ management attempts.
� The results demonstrated the serious con-
sequences of stuttering intruding on and
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interfering with natural family
communication.
� It is likely that the chronic nature of stutter-
ing over time may impact on or alter parent-
ing styles. Parents of children who stutter
have to work harder to engage their children
and compensate for their difficulties than do
parents of normally fluent children.

� The finding that children who stutter
perceive their parents with significantly
lower attachment than their fluent coun-
terparts highlights the importance of clin-
ical management for these families to
include the nature and quality of the
interactions between the parent and their
child.60 Given the pervasive influence that
parents have on their children, educating
them to recognize the potential impact
their actions can have on the child is a
crucial and enormously satisfying aspect of
the therapeutic process.
� The collective findings from this study
highlight a need to address a broader
conceptualization of stuttering. The com-
plexities of the stuttering disorder and its
impact on life relationships were reported by
every participant and their parents alike. For
clinicians, there is a need to be cognizant of
the psychosocial impact of the stutter on the
entire family constellation.
� Because each family dynamic is unique,
there is no “one size fits all” in the manage-
ment of childhood stuttering; clinicians will
need to individually assess and then problem
solve the unique and complex relationship
issues among their children who stutter,
their parents, and their siblings.
PARTNERS
The adult stuttering treatment we undertake

evolved from a family system’s philosophy in
that the partner is typically involved in the
therapy process. Because of this viewpoint
and the large numbers of adults with whom
we work, the priority emerged for us to gain a
greater appreciation and understanding of the
experiences of these partners. In looking at the
research to date, it has explored others’ percep-
tions of the person who stutters from the point
of view of teachers, professionals, employers,
and peers. However, there is limited informa-
tion regarding the impact on the most intimate
relationship of all—that between the adult who
stutters and their life partner.
Adults often view their stutter as an obsta-
cle to developing relationships with potential
partners.61,62 Hallmark research was conducted
in the 1990s by the Bobergs through their
investigation of the “other side of the block”
from the spouse’s perspective.63 Furthermore,
Julia Boberg and Deborah Kully raised aware-
ness regarding the pivotal role that the spouse
could play in fluency therapy.64 Other research
has recognized that supportive relationships
serve as a critical element beneficial to the
overall experience of therapy.65 Still, specific
issues related to how a stuttering disorder
might affect the quality of life of fluent part-
ners, or how the presence of a fluent partner
might affect an individual who stutters, have
yet to be examined. We were interested in
exploring the nature of the role of the fluent
partner and the range of their personal expe-
riences that are relatively unexplored in a study

that we recently completed.66 Participants
(n ¼ 20) included working couples in their
twenties through to retirees in their sixties.
There was a cross section of couples; some with
children, some without, and some who were
grandparents.66
What we found and the clinical implica-
tions for both partners and adults who stutter:
� Key findings from our research with partners
included that facts that people who stutter
and their fluent partners reported similar
knowledge of stuttering, similar personal
reactions to stuttering, and a similar degree
to which stuttering affects communication.
There was great congruence in their re-
sponses, in that they viewed stuttering in
the same way.
� Qualitative results indicated that the partic-
ipants shared life experiences regarding reac-
tions to stuttering. Strong emotive issues were
raised by personal accounts from both part-
ners. There were similar significant concerns
expressed with social interactions and anxiety.
Nearly half of the partners expressed feelings
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of overprotection toward their loved ones and
anguish as they watched them speak.
� The fluent partners reflected on and ex-
plained the support that they felt they
provided to their stuttering spouse on a
regular basis. This type of support varied
from explicit provision of a target word
during moments of disfluency in conversa-
tion to broader concepts of patience in
allowing the person who stutters to express
themselves without pressure. Further, most
fluent spouses encouraged their spouse to
seek therapy and described the support they
provided regarding the range of decisions
their partner made in the pursuit of fluency.
� Participants referred to the notion of “ac-
ceptance” of the stutter without regarding it
as a limitation in their relationship.
� Honesty and integrity were articulated as
important relationship components on a

consistent basis.
� However, no relationship was seen between
the two groups (stuttering spouse and fluent
partner) in terms of perceived impact on
quality of life. This implies that partners may
still not be fully aware of the true extent of
the adverse impact that stuttering has on
their loved one’s overall quality of life.
� Spouses’ comments also highlighted the
intricate and complex changes that therapy
can bring about.
� Across disciplines, the literature indicates
that a positive treatment outcome for an
individual is directly related to the family’s
commitment to and involvement in the
treatment process. Luterman demonstrated
in 1996 that if you “take good care of the
spouse, the identified patient will also do
well.”67 The findings from our research seem
to support Carlisle’s suggestion that many
adults who stutter are indeed fortunate in
their choice of life partner.68
� We believe that the potential for partners to
be agents of change to augment our treat-
ments is powerful and undeniable and that
more successful therapy results from encour-
agement and involvement of the spouse.
� Our findings provide support for a broad-
based clinical program for adults who stutter
that includes the fluent partner as a support

in their treatment efforts. Over their life-
time, the partner usually spends more time
with this person than anyone else. It makes
sense that they are a logical and valuable
resource. A more complete understanding of
the therapy process is achieved by involving
the spouse from the outset.
KNOWING ABOUT THE
PSYCHOSOCIAL IMPACT IS NOT
ENOUGH
We have described the affective, behavioral, and
cognitive impacts of stuttering, in addition to
the adverse effect on overall quality of life,
which arise from living with a stuttering disor-
der. In our work, it is clear that stuttering has an
impact on relationships within the family, in
particular for the sibling, the parent, and the
partner of the person who stutters. However,
the relationship between speech fluency and
these impacts is not transparent: The traditional
surface severity of stuttered speech does not
indicate how much the person may be strug-
gling with the impact of the disorder. Clinical
assessment regarding the person’s attitude to-
ward their communication is a priority, and
psychosocial support to reduce anxiety levels
and negative expectancies is equally important
as the actual strategies for fluent speech.
Further clinical insights arose with each
population studied. For example, the school-
aged children who stuttered reported frustra-
tion with the nature in which their parents tried
to manage their stuttered speech. In addition,
they wanted to be present when their stutter was

explained to their teachers. Such seemingly
minor yet important practical considerations
endorse future family-based interventions.
The research presented in this article has
highlighted the need and value for stuttering
treatments to include a psychosocial manage-
ment component. The demonstrated impacts
that stuttering evokes, provide the groundwork
for treatments that support psychological flexi-
bility. Consequently, research conducted in the
Curtin Stuttering Treatment Clinic has recent-
ly investigated the effectiveness of a novel
integrated Acceptance and Commitment Ther-
apy (ACT) program for adults who stutter.69,70
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In addition, the motivation for this effec-
tiveness-based study was clinical in nature. The
Curtin Stuttering Treatment Clinic is a center
offering specialized clinical expertise and is
respected as a second opinion clinic for previ-
ously unsuccessful stuttering treatments. Each
adult had formerly been provided with speech
pathology therapy intervention, but it had been
deemed not to have achieved significant im-
provement or success.
Previous adult treatment outcome studies
have documented the use of cognitive behav-
ioral therapy (CBT) for adults who stutter.71–73
Such CBT treatment components specifically
target increasing optimistic attitude and de-
creasing negative cognitive appraisal through
direct attempts to change maladaptive attitudes
toward communication and social anxieties.
The literature, however, indicates that efforts
to repress undesired thoughts may be unwork-
able and even counterproductive. Efforts to
eradicate unwanted thoughts seem to highlight
and reinforce them further, which results in
increases in unwanted thoughts especially in
times of stress.74–76 Considering the chronic
environmental stressors in the life of a person
who stutters, we thought it appropriate to
explore a different approach to the management
of experiential avoidance through a treatment
model that encourages psychological flexibility
instead of control. The six core processes that
contribute to psychological flexibility in the
ACT model are self-concept, defusion, accep-

tance, mindfulness, values, and committed ac-
tion.69,77 ACT as a treatment option has been
shown to expand behavioral choices, reduce
emotional reactivity, and improve quality of
life for individuals having chronic medical
and psychological issues in other disorders.78–80
To date, however, no research had investigated
how the core processes of an integrated ACT
model could help adults who stutter deal with
the impact of the disorder more effectively.
The integrated ACT program that we
wrote focused on effective communication
techniques for improving frequency of stutter-
ing at the same time as strategies addressing
psychosocial functioning, readiness for therapy
and change, utilization of mindfulness skills,
and psychological flexibility for adults who
stutter.69,70 The results for the 20 adults who
stutter (10 men and 10 women) showed that all
participants experienced significant reductions
in the adverse impact of stuttering on their lives,
an increase in their readiness for change, an
improvement in their mindfulness skills, and a
reduction in their overall frequency of stutter-
ing.70 Furthermore, these psychosocial and
fluency gains were maintained for a 3-month
period after the treatment ceased.70
The program helped people who stutter
focus on their personal values through a flexible
treatment paradigm that incorporated both
speech changes and psychosocial changes in
an ACT framework. It led to consistent, posi-

tive changes for a wide range of individuals who
stutter.70 The results showed us how the impact
of stuttering on the speaker and others in their
environment has the potential to be managed
through a novel and beneficial integrated treat-
ment philosophy.
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