Jim McClure
Presentation to St. Xavier
undergraduate fluency class
4/13/04
Intro - This is a
terrific place for a person who stutters to make a speech...
§ I’m here because I stutter – no need to
hide my stuttering
§ If I’m moderately fluent, you’ll think I
speak pretty well for a person who stutters…
§ If I’m stutter, you’ll be very
supportive…
§ If I stutter really severely, the worst thing that
can happen is that you’ll give me the phone number of your speech clinic
afterwards.
Will
talk about:
§ What PWS experience and how we respond to speech
therapy
§ What stuttering support groups do and how they fit in
to stuttering recovery
§ The partnership between SLPs and stuttering support
groups & consumers.
§ Issues the stuttering community is likely to face in
the next few years.
Let me start with my own
experience:
§ My stuttering became noticeable when I was in grade
school
§ My stuttering was never that severe, so – like
many people who stutter – I did also sorts of things to try to hide it.
§ I had the usual speech therapy in school, which in
those days did nothing for me.
§ When I was a kid, people told me I would outgrow
stuttering… kept hoping that would happen.
§ Finally figured out, in my late 20s, that I probably
would not outgrow stuttering… I was a slow learner.
§ I have had fairly good speech therapy a couple of
times and achieved some gains in fluency
§ But I still stutter – still have days when I
stutter severely
People who stutter are a
very diverse group, but we share many of the same experiences.
§ NSA survey in 2002: responses from more than 500 people who stutter and 98
parents of children who stutter.
§ 79% said stuttering interferes with work or school
§ 81% say they avoid speaking situations
§ 69% say they feel embarrassed when people find out
they stutter
§ 4 out of 10 say they’ve been denied a job or
promotion because of stuttering.
There are lots of
different approaches to stuttering treatment. (describe)
§ All of those treatments work for some people who
stutter
§ What’s frustrating is that no one treatment
works for everyone who stutters.
§ One thing most PWS have in common is that at some
point in our lives we have wanted to stop stuttering so desperately that we are
willing to try anything.
§ When one kind of therapy does not work, many of us
will try something else. In our
survey, 9 out of 10 adults who stutter had had speech therapy, and two-thirds
had therapy three or more times.
§ One thing that amazed me in the survey was the
treatments that people have tried… not just speech therapy, psychiatry
and hypnosis, but electroshock, acupuncture, tongue surgery – even a
Native American sweat lodge and a faith healer.
Part of what drives this
desperation to stop stuttering is the way stuttering is perceived.
• If
you compare stuttering with other disorders, stuttering isn’t all that
serious. Some people have trouble walking, some people are hard of hearing,
some people stutter. Not a big deal.
• But
there’s a big difference in how stuttering is perceived. If you walk with an obvious limp, Boy
Scouts help you across the street. If you’re hard of hearing, most people
will talk a little louder. But if
you stutter, people assume that you’re nervous, incompetent, or mentally
ill. People usually won’t
laugh at people who use wheelchairs -- but they do laugh at people who
stutter.
• So
we’ve always approached stuttering from the premise that stuttering is a
bad thing to do.
The result is that many
PWS spend most of their lives chasing fluency
§ •The goal most of us start out with is to NOT
be a PWS -- to speak fluently without modifying our speech -- to not lose
control the way PWS do and normal speakers do not.
§ Most of us CAN gain improved fluency from speech
therapy, but for most of us those gains do not last.
Speaking fluently doesn’t solve the problem.
• I’ve
met a number of people who speak with excellent fluency -- never heard them
stutter at all. But they live in
daily fear that they MIGHT stutter - and go through all the shame and guilt and
avoidance that severe stutterers do.
• For
some people, fluency skills are just another way to hide their stuttering --
all because of the traditional mind-set that stuttering is a bad thing to do.
In our survey we asked
people who stutter what kind of success they had with different approaches to
speech therapy
§ Therapy that teaches ways to NOT stutter was
judged very successful by 19% of the people in our survey
§ Therapy that teaches ways to stutter more easily
was rated very successful by 30%
§ Therapy that helps change attitudes about
speaking and stuttering was considered very successful by 50%
So—for most people
who stutter, learning how to talk better is only one piece of what we need to
truly RECOVER from stuttering.
• PWS
have a lot of debates on what constitutes success in dealing with stuttering,
and I’m sure SLPs do, too.
• I
like the definition I once heard from Herb Goldberg, one of the pioneers of
stuttering support. He defines recovery as the ability to live the lifestyle of
a fluent speaker: to pick up the
phone instinctively, speak spontaneously and naturally, order in a restaurant,
speak in public and communicate as effectively as fluent speakers do -- without
the excess baggage of fear and shame.
(Notice that fluency is NOT a requirement for
recovery in this definition.)
• Speech
therapy taught me to how to modify my speech – at least some of the time
-- but it wasn't until many years
later that I learned not to beat up on myself when I had a block.
That’s where
stuttering self-help groups come in.
§ Stuttering support organizations started in the
1970s.
§ NSA is the largest support organization in the world
§ Chicagoland chapter – what happens at a meeting
(discussion, practice speaking)
§ Convention – see people who stutter worse than
I do get up to talk… and start thinking. “I can do that.”
What we get out it
• Not
alone -- the one place we can talk about our stuttering with people who
understand what we're going through.
§ New experience for some because most of us grew up
ashamed of stuttering and learned to NOT talk about it – because nobody
understood what we were going through.
• Safe
place to talk and practice fluency skills.
• Also
a safe place to stutter - some of us stutter more in group because we feel
freer to stutter.
§ Our survey found that people who attended our
chapter meetings or national conventions reported significantly less
interference with work and social life. They avoided speaking situations
less, and were less likely to feel embarrassed about stuttering.
What we’re doing
here is changing the rules about stuttering.
• We
still want to speak fluently when we can, of course. But we also believe that
stuttering is NOT a bad thing -- and that people who stutter have the right to
be treated with the same respect and accommodation as people with other
development disorders.
• When
we begin feeling free to stutter in public instead of trying to hide our
stuttering, we often speak MORE fluently because we’re no longer fighting
all the fear, guilt and shame that compounds the problem of stuttering.
Many of us are making a special effort to advertise
our stuttering instead of trying to hide it. When I give a speech or
presentation, I make it a point to mention my stuttering up front.
• That’s
the change I’ve gone through in the last 10-15 years. When I stopped
chasing fluency, I got more fluent. The biggest difference is that when I do
have a block, it doesn’t ruin my entire day -- because I’m no
longer pinning my sense of self-worth on whether or not I have a stuttering
block at a particular moment.
§ The result, for many of us, is that participating in
the NSA helps us leverage the benefits of speech therapy by changing our
attitudes and making more effective use of whatever fluency skills we may have
retained from therapy.
One of the most important
trends - partnership between stuttering support and SLPs
§ Stuttering support started in the late 70s – at
first, SLPs were suspicious of the notion that stutterers could help themselves
instead of relying on clinicians. Our organization literally could not get in
the door at ASHA 30 years ago… now we have a popular booth in the center
of the exhibit hall.
§ Growing recognition among SLPs that it takes more
than just fluency skills. More client-centered therapy that considers the
attitudes and feelings of the person who stutters rather than one size fits all.
§ SLPs who stutter themselves have done some of the
pioneering work in stuttering research and treatment.
§ Consumers who stutter are now represented at ASHA
§ SID-4 has about 800 clinicians who specialize in
stuttering
§ Specialty Board on Fluency Disorders – about
300 board-recognized specialists.
§ We’ve seen a lot of progress in working with
children and teens… early intervention plus family programs.
§ Some of the top SLPs who specialize in stuttering are
active in the NSA – board, research committee, etc.
That’s the good
news. The challenge is that the majority of SLPs still do not know much about
stuttering. Many people who stutter – perhaps most – are not
getting the help they need.
§
You
are fortunate in having courses in fluency and the opportunity for clinical
practice. Many SLPs – who have their CCCs and are considered qualified to
treat every kind of speech disorder – have had little or no training or
clinical practice in stuttering treatment.
§
Surveys
have show that the vast majority of SLPs have very few people who stutter in
their caseloads and often feel uncomfortable in treating stuttering.
§ Most SLPs agree that the earlier a child who stutters
starts therapy, the better the chances for success. Yet in our survey, 24% of
parents said they had been advised to postpone speech therapy until their child
was older – usually by pediatricians but sometimes by speech therapists.
§ Parents in the NSA survey told us that the therapy
their children who stutter were getting in school was very successful only 8 to
12% of the time and not at all successful about 40 percent of the time.
§ They got significantly more successful therapy from
university speech clinics and private therapists.
From the standpoint of a
consumer – someone who wants to recover from stuttering –
there’s no way of knowing which stuttering treatment will be the best
investment for them because there’s no reliable data on treatment
outcomes (vs buying a car, selecting a restaurant, etc.) No way to kick the tires.
§ Some treatments (usually the ones that cost $5,000)
make extravagant claims of success, but they’re bogus or meaningless.
§ Most treatments can show that a client will be more
fluent the day he leaves the clinic than the day he walked in. Clinicians tell
me getting someone to speak more fluently inside the clinic is not very hard to
do – but the vast majority of PWS relapse later. It’s not unusual for someone to
be stuttering a year later as severely as before he started therapy.
§ Stuttering treatment is largely unregulated. You have
to be a certified SLP to do speech therapy in the public schools, but people
with no professional qualifications at all can set up shop, promise to cure
stuttering, and make money.
§ Nobody out there seems to be doing any long-term
tracking over a period of years.
§ The traditional measurement of stuttering severity
– percentage of disfluent syllables – fails to measure much of what
is going on with people who stutter and is not particularly relevant.
This is an important
challenge because I believe SLPs will be under more pressure in the future to
show relevant data to demonstrate that their treatment is effective.
§ Public schools now are under the gun to test the kids
and prove that they are actually learning.
§ Hospitals and nursing homes are being forced by the
government and insurance companies to post data on quality and patient safety.
§ It’s only a matter of time before speech
therapists, especially in the schools, will be required to produce data on
treatment outcomes.
§ So it’s critical for the stuttering community
to come up with some way to measure stuttering that is relevant to people who
stutter, and that will separate the reputable clinicians from those who are
less ethical.
§ We are seeing a little progress here – Two
prominent SLP professors (Scott Yaruss and Bob Quesal) are developing a
detailed questionnaire on the life impact of stuttering that promises to be a
more accurate measure of stuttering severity – and treatment
effectiveness – than traditional fluency measurements. A few clinicians
are beginning to use this.
Another challenge is that
there are more stuttering treatments out there.
§ Products such as the SpeechEasy
§ Promising research in genetics and prescription
drugs.
§ This is a two-edged sword – more competition
for SLPs, but more choices for consumers.
§ The challenge for both SLPs and groups like the NSA
is to help consumers make sense of all this.
To end on a positive
note..
§ Those of you who choose to specialize in stuttering
will find more challenge, change and opportunity than ever before.
§ You will need more knowledge and a broader range of
skills than SLPs have needed in the past.
§ But you will have more support and partnership with
consumers than was possible 20 years ago, or even 10 years ago.
§ It will be a wild ride at times, and it’s not
for the faint-hearted -- but if you choose to tackle the challenge of
stuttering I think you will find it exciting and rewarding.
One final thing I've
learned -
When PWS get a little
fluent, it's hard to shut them up.
So let me cut myself off
at this point, and let's hear your questions.
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