The sad story of a stuttering child's mother

On Nov. 5, 2003, Xinhua Online (sponsored by Xinhua news agency, China's largest news agency) reported that a mother wanted to set 100 fires to help cure her child from stuttering, and finally was sentenced to 3 years of imprisonment.

Mrs. Zhao, whose child stutters, lives in Tongxu County, Henan province, mid-land China. As she could not find help from hospitals for her stuttering child, she went to a fortuneteller, and was told as soon as she finished setting 100 fires, her child would become fluent. Hence, starting in October of 2002, she began to set fire to her neighbors' straw in the open fields. More than 20 fires were set before she was caught by the scared and angry villagers. In court, she showed great repentance and regret.

The news did not say anything about Mrs. Zhao's child's stuttering:: is it a boy or a girl, how old is him/her, how severe is his/her stuttering, etc. This story demonstrates how much children's stuttering is neglected in China.

When I was a young boy stuttering severely, my mother did not treat it seriously. She thought that this disorder would disappear when I matured, just like another boy in my neighborhood. On rainy days when I stuttered she would slap my face really hard, which is a belief and practice of many, many Chinese. Being a proud and sensitive boy, this action only added to my feelings of humiliation. I became silent, unwilling to talk to her. It took me about 20 years to learn to communicate with her in an appropritate style.

Now, looking back, I feel fortunate that my mother did not choose to set fires to treat my fluency disorder. I could not imagine what would happen to a stuttering child when his/her mother was put into prison just because his/her stuttering. That would be a heavy burden even to a normal child, much less than when the child had great difficulty in communication.

The fact: stuttering in children is neglected!

In recent years the business of stuttering treatment flourishes. Now there are over 40 programmes throughout China, nearly half of them developed since the year 2000. Within 3 hours travel inside and outside of Shanghai city, there are 13 people who treat stuttering. One has been in this area over 40 years (almost retired now), the others, vary from 9 years to several months. Nearly every one of them is self-educated, which is to be expected since stuttering disorders have never been studied in any scientific research in China. From1988 until the present, 9 devices have been patented to inhibit stuttering, including the "ancient" pace-maker (whose manufacturer has been advocating it as the magic cure), and the SpeechEasy, the newly-invented DAF/FAF device. Approximately 5 medical treatments, primarily Chinese herbs, are said to be effective to treat stuttering. Since we believe that there are over 10 million people stutter in China, and the developing economy requires of everybody more complicated and efficient communication skills, it is no wonder that there are great demands for fluency disorders treatments.

However, almost none of the programmes, devices or medicines are specially designed for the child who stutters. Some therapists might hold courses for children during their vacations in winter and summer, but usually they will mix the children with adults, and the treatment is the same, that is, most likely smooth speech, or prolonged speech. This summer, Mrs. Lin Lan (a retired assistant professor) started courses for stuttering children and teenagers in Beijing, together with the brain-cognition team from the psychology department, Beijing Normal University. One team member, doctoral student Liu Xugang, had previously been a mild stutterer. Usually they were 5 to 7 days of training, altogether 20 to 30 hours, and parents were required to accompany their children. Since I have not read any published papers about their therapy, and have no direct communication with Mrs. Lin Lan, except their advertisements and the feedback of some of her adult clients, I can say no more.

No investigation has been launched about children's stuttering, at least in mainland China. There may be some investigation about children with hearing loss, mental retardation, etc, but not about stuttering .Most therapists and researchers claim the percentage is 3-5 percent, similar to that in western countries, but some say it is closer to 8-15%. That is obviously astonishing. However I cannot determine where this data is from. According to Dr. Yang Shulan, there were only 116 preschool children who have speech/language disorders throughout Taiwan (from the Taiwan education department's statistics, in 1999) and only 7 in Taibei city in the year 2000. The number was greatly underestimated, as every stutterer knows with instinct. Normal people tend to ignore stuttering, while the stuttering therapists tend to exaggerate its numbers.

No researchers are specialized in area of stuttering. Only in 2004 did the major of speech language pathology appear in universities in mainland China (in East China Normal University located in Shanghai), and to date there still are no professional researchers on stuttering. Dr. Song Luping, a neurologist and psychologist, who received her Ph.D. degree in Beijing Normal University, wrote some papers on stuttering; Dr. Li shengli in Beijing and Dr. Jin Xinming in Shanghai, attended the 6th World Conference For People Who Stutter in Ghent, however they are specialists in rehabilitation medicine. In Taiwan, there are Dr. Yang Shulang, Prof. Yairi's Ph.D. student, and Dr. Jennifer Zeng, also a speech-language pathologist, but, due to the complicated relationship between mainland China and Taiwan, they cannot help stutterers across the narrow strait.

There are few materials for stuttering in children. In year 1999 or so, Mr. Stefan Hoffman, Vice chairman of the International Stuttering Association (ISA), developed the Chinese website of ISA and translated some papers into Chinese. One that is very valuable is, Sometimes I just stutter, a small book by Eelco de Geus. In addition, I discovered some valuable instructions in Hong Kong and Taiwan. I searched the database of 4 of the most important newspapers in Shanghai and found that in the last 2 years, there were 13 articles with the keyword stuttering -- 12 of them were basically advertisements , the other was a very short article consisting of only about 100 Chinese characters, and was news translated from Western papers.

In the large rural areas where about 70% of the Chinese people live (approximately 0.8 trillion), mothers like Mrs. Zhao cannot get help from any professional therapist, or they cannot pay for therapy. One 5-10 day course for stuttering usually will charge from RMB 500 to 3,000 (about $60 to $400), plus traveling and accommodation fees. For a financially poor family, it would be ridiculous to even think of spending half or their year's income to treat their child's stuttering, especially when most rural people regard this disorder either as a inherited disease that cannot be treated, or believe it will be out-grown. The social welfare system has not, and will not in the near future, cover therapy for stuttering.

School teachers have little knowledge about speech/language problems, and are not trained to help pupils with speech disorders. I have contacts with some special education teachers, and to the maximum of their scope of knowledge, they know nothing more about stuttering than a lay person. On International Stuttering Awareness Day, year 2003, our Shanghai Stuttering Association members got together on the lawn of the East China Normal University, with a banner indicating ISAD. The future teachers came and went, and chuckled when they saw our banner. "What is stuttering?" I heard one girl asked the other girls, and the reply was "K...K...Kouchi!" (the Chinese word for stuttering) with contempt.

Social awareness has little to do with stuttering problems. I have only read two articles about International Stuttering Awareness Day, one of them reproduced on several websites. For the 2004 International Year of the Child Who Stutters, not only have people who don't stutter neglected it, but the stutterers active in most stuttering self-help group and websites do not consider it as a serious topic. I would like to suggest that this problem must be resolved with an increase in awareness of stuttering and other disorders, and raising the responsibility of stutterers themselves.

The future — It's meaningful to change the world of even one child who stutters

In the search engine Google, typing in "kouchi" (stuttering) in Chinese character, there will be approximately 63,100 results, half of them worried young mothers eagerly searching for help about children who stutter. This is a good sign to predict that children's speech development has been taken into serious consideration of parents, and I believe their recognition will lead society to regard stuttering as serious a disorder as hearing loss. When this happens children who stutter can live in the more friendly situation. The problem remains, however that there is still no real stuttering specialist in China, and the so called "specialist" that give advice on the internet, although they can sometimes provide useful ideas, do not have any interest in raising social awareness of stuttering. There is still a long path ahead.

The development of stuttering self-help group has burgeoned since the year 2002. Primarily they are started by ardent young stutterers typically in their 20s, and at present they only focus on improving their own fluency. However, their activities have been reported by some newspapers, radio channels, in some large cities. Stuttering is beginning to catch the eyes of society, and I believe, in time, the self-help groups will advertise to help the stuttering children. There are always people willing to carry these responsibilities.

The professional study about the disorder of stuttering will be carried on in the near future. As far as I know, several Chinese, including myself, have applied for the research program about stuttering in USA, and in other countries. Also there are several postgraduate students in psychology who have shown great interest in stuttering. Now that there is a post-graduate program for hearing loss, and undergraduate courses for speech and hearing science, soon the dysfluency disorder will be included in these programs, as stuttering is really a problem that cannot be neglected.

Finally, I would like to thank Mr. Stefan Hoffman and the ISA. Mr. Hoffman's great job in China effectively propelled the development of Chinese people's awareness of stuttering. The ISA, and other national or international groups, have set a model for the Chinese stuttering self-help groups. Following their path, I have full confidence that our effort can help Chinese children who stutter to have a brighter future.

1, Xinhua Online, www.xinhuanet.com, news on Nov. 05, 2003

2, Dr. Yang Shulang's (Taiwan) personal website, http://cclearn.npttc.edu.tw/tuition/shuyang-web/special/index.asp

3, China's stuttering web, www.stutter.cn

4, SpeechEasy Forum in China, www.speecheasy.com.cn/bbs

-Discussion-

August 28, 2004