Presentation to St. Xavier Undergraduate Fluency Class

Jim McClure
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.