Contents
4. Why do some PWS tend to speak fast?
Why do they deny the problem? 7
5. How does stammer affect PWS? 8
6. Why do people react to stammer as they do? 8
7. How do I know if my child will grow out of his
stammer? 9
8. What can I do if my child stammers? 9
9. What shall I do when I am talking to a PWS? 10
10. I am a teacher. What can I do to help? 11
11. I am a PWS. What can I do? 12
12. Is there a cure for stammering? 13
Following current trends, which emphasize that people come first and only then their disability, we have preferred the term ‘PWS’ (people who stammer) over other terms in this booklet. Stammering is something we do; it is not something we are. Furthermore, stammering may be the most apparent thing about us, but it is not the most important thing about us. And, of course, this is true of any difference or disability we see in ourselves or the people around us. Lastly, we have used ‘stammering’ and ‘stuttering’ interchangeably.
Many people have risen above their difficulties. Not only that, but they have gone on to share their experiences with others. Without such sharing, the following efforts would never have been possible. In particular we wish to acknowledge the following sources:
l
The Stuttering Homepage
(Judith Kuster, Minnesota State University)
l
www.stutteringhelp.org
l
British Stammering
Association
l
Indiastammering.com
l wikipedia.org
I also wish to thank Satish Patel and Keith Boss for their
valuable feedback.
Dr Satyendra Srivastava Date
11th April 2007
SAMAGRA
Speech Support Group
Herbertpur, Dehra Dun
Uttarakhand
Dedicated
At the holy feet of
Sri Chandra Swami ji Udaseen
Sadhana Kendra Ashram
Dumet, Vikasnagar, Dehradun
Preface
“This child can sing very well but cannot put two words together without stumbling.”
This is how I recall my mother sharing her confusion with a neighbor, when I was a child. I too as a child often asked, as I would be drifting off to sleep, why do I get stuck on some words? But no answers were forthcoming from any quarter. I grew up, learned to communicate, by choosing words carefully, sometimes avoiding certain situations and words. Sometimes I was fluent, sometimes not. After all, it was a problem which had extreme variability. There were ‘good days’ and there were the ‘not so good days’. Stammering is not a fixed and visible disability, like blindness or paraplegia. This was both an advantage and a problem for me.
After training as a medical doctor and working as a social worker for years, I realized that while stammering may not have a cure, in the same way as Tuberculosis or other diseases have a ‘cure’, there is a lot both PWS and society can do about it. There is considerable improvement in speech therapy now, even if it is not accessible to a vast number of people in India. The Internet has plenty of self help material and forums for PWS. On the other hand, social attitudes are changing on a variety of issues. More needs to be done yet. A large part of the problem of stammering is the lack of public awareness and support. This booklet is being offered to address this need.
Have you, as a child, ever run to a drain, confident that you will jump across- and then suddenly stopped right at the edge? Discovered that you just could not- not even for your life, leap across? Do you recall the feelings of disappointment and frustration? Even confusion and shame? This is what happens to many children when they try to speak and can not get out one word.
People who stammer (PWS) know it intuitively. For others, it is involuntary repetition of part of a word (syllable) while speaking. It is caused by a rare neuro-physiological disorder of the speech nerves in the brain. It is important to understand its ‘involuntary’ and ‘variable’ nature. It may not be present while singing, whispering, reading with others, talking to pets, friends and under a variety of other conditions. On the other hand, it may strike under quite common situations like saying our name, talking over the phone, speaking while being observed, etc. There is considerable variety in its symptoms and factors which lessen or make it worse.
It is one of the truly ubiquitous health disorders. PWS are found in every socio-economic group, culture and region. It is more common among men than women by 4 to 1. About half of PWS may have a close relative with the same disorder. But people do not know enough about it and therefore many misconceptions prevail about this disorder:
“Stammering is just
a bad or funny habit.”
“Stammerers can’t
think clearly.”
“Stammerers think
too fast for their tongues..”
“Stammerers are not
intelligent.” Etc.
The fact is that PWS are normal people in all other respects. But as they grow older in a society which does not understand their particular disorder, they tend to mask their problems at considerable emotional cost and suffer in isolation. Society and PWS need to acknowledge the problem and take necessary steps.
Let us go back a little and understand how we talk. Speech is a complex activity, wherein hundreds of muscles act in close coordination. One of these muscles is the diaphragm, the muscular partition between the chest and abdomen. It acts as the bellows and pushes streams of air up, passing through the vocal cords. This gets the vocal cords vibrating. The tongue and lips, other muscles, modulate this vibrating air stream by coming in contact with each other and other parts of the mouth.
All this fine coordination takes place because of minute electrical impulses originating in the brain and running down to these muscles through fine nerves. Within the brain itself, a group of nerves, designated as the ‘speech area’ are connected with other parts of the brain dealing with grammar, syntax, speech content, emotions, thinking, analysis, visualization, memory, etc. We all know that strong emotions can rob one of the powers of speech. It seems that among people who stammer, this vulnerability is greater than ‘normal’.
The most common symptom is repetition of a part of the word: My name is S-S-Sachin. But over the years, a child develops many more symptoms of which he himself may be largely unaware:
As the child moves to adulthood, some psychological symptoms are added:
Some PWS may be able to manage their dysfluencies so well
that even their family may not know that they stammer. Even though their speech
sounds fine, these "covert" PWS can be crippled by severe
psychological fears and anxiety.
Between 5% and 15% of children stutter at some point in childhood. These are ‘normal dysfluencies’ of the growing child. Many children recover spontaneously. Some children may persist with this manner of speaking due to certain stress in the environment - birth of a sibling or other stresses of the early family life. This stress could also be due to demands made by “Grammar”, which a child is just beginning to learn at this stage. Genetics also play a role, since about half of such children may have a PWS as a close relative. The sex ratio among children who stammer is equal but gradually becomes 4 men to 1 woman in the adult age population.
“I invariably gave wrong answer in
the class. This was preferable to giving the right answer and stammer..”
(an Indian PWS).
Over all, about 1% adults are expected to be PWS. They can be found in any
caste, community, ethnic group or region. Therefore their number in India would
be at least one crore (i.e. ten million). Some Indian therapists claim that their
number could even be more- almost 3%. But due to cultural stigma and social
attitudes, they may neither seek help nor accept their problem openly.
It is simplistic (wrong) to believe that it is just a ‘bad habit’. There is an actual ‘neurological’ disorder which makes uttering some sounds (often consonants) or transition from one sound (syllable) to another difficult. When the nerve impulse for the next syllable fails to come from the brain, the speech system repeats the last sound, until it arrives. Sometimes no sound or air may escape- a block. PWS often describe it as locking up of their jaw, tongue or mouth. This leads to considerable struggle behavior- as if we are trying to force the word out of our mouths. Eye blinking, grimace, head nodding or movements of other parts of body may be associated with this struggle. At one time, we may have used it to get out of this ‘block’, and then they become unconscious secondary behavior.
Brain scan studies have found no differences in brains of PWS when they are not talking, and when they are talking fluently. But during stuttering, changes are seen in their brain activity. Left-brain areas (where speech and language are produced) which should be active during speech, become inactive, while right-brain areas which should be inactive during speech, become active. Unusual right-hemisphere activity is related to fears, anxieties, or other emotions PWS may associate with speech. So it can not be said if this is the cause or the effect of stammer.
Brain scans have found abnormally low activity during stuttering in the central auditory processing area, and in the area that integrates auditory and somatic (body) sensation. Stuttering seems to be related to an inability to integrate what the PWS hear - with the muscle movements they feel.
Stuttering appears to be caused by excessive amounts of the neurotransmitter dopamine in the left caudate nucleus. This is the area that translates speech into muscle movements.
Another prominent view is that stuttering is caused by neural synchronization problems in the brain. Recent research indicates that stuttering may be correlated with disrupted fibers between the speech area and language planning area, both of which are located in the left hemisphere of the brain. Such a disruption could potentially be due to early brain damage or to a genetic defect.
Stress & Anxiety: In certain situations, such as talking on the telephone, stuttering might increase, or it might decrease, depending on the anxiety level connected with that activity. Stuttering appears to reduce stress in PWS temporarily, as measured by systolic blood pressure, but then causes stress, creating a cyclical pattern in which the PWS stutters on the first syllable of the first word, then says the rest of the word and several more words fluently, then stutters again, then says a few more words fluently, and so on.
One study found that developmental stuttering and Tourette Syndrome may be pathogenetically related. The central feature of Tourette syndrome is ‘tics’; Tics are repetitive, semi-voluntary movements such as eye blinking, throat clearing, coughing, neck stretching, and shoulder shrugging, etc. Tics are exacerbated by stress, and when the affected person tries harder to control the undesired movement, the conditions can become more pronounced. But while Tourette’s is considered a health disorder, stammer is thought of as a ‘strange habit’.
From the research of Per Alm, another theory is that there are two pathways in the brain, responsible for speech. While the medial path deals with spontaneous speaking, the lateral path deals with speech, where ‘timing cues’ are coming from outside like reading in unison, singing, talking to the rhythm of a metronome etc. It is proposed that the medial path is affected among the PWS; therefore spontaneous speech may be affected but singing, reading in a group etc. might be quite normal. Further, the lateral path has the ability to provide timing of speech without external cues, but it requires greater conscious focus on certain aspects of speech. For example, PWS may stutter much less, while imitating a dialect, an accent, doing role play, whispering etc.
When children start speaking around 2-3 yrs, stammering is a normal event, which gradually clears by the age of five or six. But this stammering of the child is quite ‘smooth’ and ‘transparent’. It is not associated with the struggle, secondary behavior (blinking, nodding etc.), avoidance behavior and emotional side effects which are often seen in adolescent and adult PWS. Between 3-6 yrs, certain stressors may predispose some children to persist with ‘developmental stammer’, which gets overlaid with dense secondary, emotional reactions and habits. These reactions are initiated and shaped by early experiences with other children, siblings, family and teachers. The ‘horror’ seen on the face of a kindly teacher can be internalized by the child as a negative emotion of shame, forever linked with the act of talking.
Later, these negative emotions manifest as fear of certain words, situations and even people. These inner fears make forward flow of speech difficult. They result in ‘blocks’- when the child (or adult) is not able to make any sound in spite of much struggle. PWS often fear a block as a very embarrassing event. But these blocks are completely unpredictable. So, they try to say rapidly, whatever they have to, before they get the feared ‘block’. Another common reason is they fear that they might be interrupted, which has happened with them so often as a child.
Denial is a normal psychological reaction to overwhelming stress. When we have lost a loved one, our mind refuses to believe the fact, for the first few weeks. Regarding stammering, society has a deep discomfort born out of incomprehension, something like: Perfectly normal people losing all control over themselves, something like an epileptic…
On the other hand, to most PWS in developing countries, little or no treatment is available. And lastly, this is one disorder whose variable/ invisible nature makes it possible to believe that it has improved and gone away. Under these circumstances, PWS with less obvious stammer see little gain by acknowledging their problem. Obviously, if they could accept it, it would save them from considerable stress and anxiety.
A common problem faced by young PWS is job interviews. Stress is well known to increase the speech difficulties. The interviewers may mistake this for lack of confidence, lack of knowledge, nervousness or a chronic communication disorder. They may not realize that the same person may speak normally on the job.
The other problem young PWS may face is the difficulty to communicate their feelings, inner thoughts and develop enduring relationships, particularly with opposite sex. Since strong emotions make stammering worse, PWS may find expressing anger verbally difficult. Often such emotions are buried deep and result in feelings of self loathing, unworthiness and deep dissatisfaction. Without our knowing, these feelings may affect our attitudes, our view of the world, our choices of pastimes, career, relationships etc.
On the other hand, some PWS grow into diverse directions: they may learn diverse languages, become writers, singers, actors, IT professionals, doctors, teachers etc. They may even attribute their success to their stammer and consider it as a blessing in disguise. But many PWS are not able to acquire higher education. This is because educational institutions have poor understanding of this neurological condition. Few schools have a speech therapist on their faculty.
As they grow older, PWS may develop better insights into their problems. They may even become more accepting of their issues and problems.
Studies show that people (both PWS and those who speak ‘normally’) experience stress (raised BP, heart rate etc.) when they hear someone stammering. Studies also show that PWS experience considerable stress when they feel they have to be ‘fluent’. This is a dilemma. Who should have the onus of coping with their stress?
Ideally, the audience should work on their attitudes by
developing more acceptance to the diversity we may have in our speech. The PWS also
need to work on their overall communication and not worry so much about
‘fluency’. Both need to be aware of their sub/unconscious reactions
(like looking away, shifting uncomfortably, etc), in order to be able to deal
with them successfully.
As mentioned earlier, normal dysfluencies are a part of a child’s speech learning process. But the old practice of ‘wait and watch’ is no longer recommended. The following considerations may call for an early consultation with a speech therapist.
While direct therapy with the child will be conducted by the therapist, the family has a vital role in helping the child gain the new skills, habits and attitudes:
Speech therapy is not affordable for everyone, nor is it available everywhere in India. But it does help. So if you can, go for professional help. But many PWS may not be able to do so. Here is what they can do on their own and with some help from family and friends:
1. Start talking about the problem with close friends or family members; this reduces the emotional isolation we develop over years. You may even start an interactive blog on the web. Here are two examples:
http://thestutteringbrain.blogspot.com/
http://closetstutterer.blogspot.com/
2. Prepare well for formal presentations - use PowerPoint if appropriate (or other AV aids).
3. Consciously plan and place thoughtful silences in your speech; use these silences to breathe deeply. It relieves stress and tension in speech muscles. Make your presentation or discussion participatory: ask questions and listen to others when they talk.
4. Smile whenever appropriate, while talking. Smile reduces your tension and the chances of stumbling over words also goes down.
5. Practice deep abdominal breathing and other relaxation exercises at frequent intervals during the day. While talking, remind yourself to switch into this kind of breathing instead of holding the breath unconsciously.
6. Volunteer to serve someone needing help in the neighborhood for example, a person with paraplegia. This takes your mind away from your own problem and generates good vibrations.
7. When sub/unconsciously, you talk to yourself- what kind of things do you say to yourself? PWS often acquire critical attitudes of the world around them and judge themselves harshly for every little failure or setback. The use of positive affirmations, religion, yoga, meditation, etc can help us change our self perception and attitude towards life.
8. Join a self help group. Start one if there are none in your neighborhood. A self help group can start with even two PWS. For ideas about how to run a self help group, visit the following website:
http://www.indiastammering.com/
You may even join a web based support group. Here are two:
http://uk.groups.yahoo.com/group/stutteringselfhelp/
http://health.groups.yahoo.com/group/IndianPWS/
There are many specific skills (like eye contact, slow onsets etc) to be acquired by constant practice and by developing greater insight into and awareness about what we do when we stammer. Which muscles tense up? Do we hold our breath or try to force it out against a closed throat? What happens before and after? This awareness helps us to deal with these, one at a time and over a long period.
Above all, do you have the will to change yourself? It is a long process with many ups and downs, but finally a very rewarding journey.
Drugs have not shown much promise. Among the electronic aids, Delayed Auditory Feedback (DAF) and Frequency shifted auditory Feedback (FAF) machines have been shown to help. These machines look like a hearing aid and play back the sound of our own voice in the ear with a delay of 40-100 microseconds. This is based on ‘choral effect’: PWS stammer less when speaking in unison with others. It also slows down the speech. Similar software can be used with some cellphones; it works even when we are not talking on the phone. But these technological interventions do not offer a ‘cure’ and beneficial effect tends to wear off after some months in some cases. As a part of wider exploration, it should be given a try. It could also be used as an adjunct to speech therapy. The software is available for free trial on a regular computer or palmtop:
There have been some claims of cures but there have been no objective studies to confirm this. To many PWS, to be able to talk about their stammering without a sense of fear or shame is ‘cure’ enough. Yet they should continue to work on their ‘communication’ skills and strategies- as opposed to ‘perfect fluency’, which in any case is a myth.
For more ideas or to help organize a workshop, feel free to contact:
SAMAGRA
Speech Support Group
478/1 Eden Bagh Herbertpur
Dehradun UTTARAKHAND
Ph: 01360-250600, 9412058272
SOME TESTIMONIES
“I felt diminished by
my stutter. It was very confusing. It went away and then returned- for no
obvious reason! It was very mysterious. It ruled me. At the core of my being-
instead of light and joy, there was this fear of words, of situations, of what
the world might think or say…But as I talk about it, a new world is opening
up..”
“I had never seen or
listened to another stammerer. After joining this self help group, I have
discovered that I am not alone. That there are many, just like me. We are
silent but we are there- a sleeping continent..”
“I became a researcher,
I guess, because of my stammer. I don’t have to speak too much in this
job. But I am worried now. Will my child inherit my problem?”
“It is the sheer
vulnerability of some very young children incapable of communicating without
extreme effort and discomfort that makes parts of Unspeakable almost
unbearable..” (‘Unspeakable’ is a movie on stammering by John
Paskievich)
THIS BOOKLET
Stammering is as old as human
speech. It is a neurological condition which leads to communication
difficulties. Its presentation can be very diverse and variable. Social stigma
plays a major role in its evolution. While speech therapy is a possibility, it
is not available to many in small towns and villages across the country. Social
education, focusing on teachers, employers, health care providers, parents and
family members appears to be the key. Self help groups can help a lot. This is
a primer for anyone interested in the issue: PWS, their family members, teachers,
friends or colleagues.
SAMAGRA
Dr Satyendra Srivastava is a
Community health consultant and a recovering stammerer. He works with voluntary
agencies and lives in Herbertpur, near Dehradun.
Samagra aims to create an
integral institution and a movement of individuals, each pursuing their vision
of a harmonious relationship with themselves, the earth and the cosmos at
large. The work of Samagra will be centered on integral awareness, action and
living, focusing on such areas as health, spirituality, the environment,
education, complementary medicine, interfaith initiatives and mind-body
approaches to health. It is a trust in India.