Newsletter
Volume 28 | 2005 | Number 2
Training Parents and Professionals to Help Children with
Autism in China: The Contribution of Behavior Analysis
Guo Yanqing, M.Ed., Institute of Mental Health, Peking University
Background of Training Children with Autism in China
China is the most populous country in the world, according to the State Statistics Bureau. At the end of 2004, China had a population of 1,299,880,000, with 279,470 000 children from 0 to 14 years of age. It is estimated that at least 400,000 to 800,000 children have autism. Compared to China’s fast economic growth, the development of social welfare and social insurance systems are far behind. Once a child is diagnosed with autism, it is usually not the government or community who take responsibility for the child’s rehabilitation but parents or primary caregivers.
The diagnosis of autism was first introduced and described in China in 1982, more than 40 years after Leo Kanner’s first descriptions of such cases. In the first 10 years after this introduction, the main concentrations on autism were based on clinical appearances and diagnosis; many kinds of hypotheses were suggested without any effective treatments provided. During the next 10 years (1990 to 2000), early diagnosis was still the main mission of child psychiatrists treating autistic children. However, there were small improvements during this period. For instance, many self-help organizations, such as the Beijing Association of Rehabilitation for Autistic Children (BARAC, founded in 1993) were established. Although many of these organizations could not provide any specific direction or instruction for rehabilitation, they did provide an opportunity for parents to share their feelings and experiences, and helped parents face their difficulties with a more realistic attitude and in a more rational mood. Since 2000, more and more people are interested in rehabilitation rather than diagnosis and medicine treatments. Applied behavior analysis has become popular in all kinds of newly established centers. However, the performance of professionals is still not as advanced as it should be; at the same time, parents still lack knowledge of and skills for rehabilitation: they just blindly invest their energy and money in newly established centers, one after another. Each brings hope finally followed with a deep feeling of loss and despair. Both parents and professionals are in great need of true effective intervention information, knowledge, and skills.
ABA methods and techniques are very well developed in the US and are now being extensively used in the intervention of children with autism. In consideration of this, a training program focused on teaching parents to train their children at home was developed. Concurrently, professionals are also trained gradually to meet professional guidelines for parents’ and professionals’ performances with children with autism. The professional training sessions not only educate professionals to provide support for parents with autistic children, but also foster interest in different areas of applied behavior analysis.
Parental Training Programs
Training Materials
Guidelines for Parental Training in Home: A training manual made up of lecture PowerPoints that includes the behavioral characteristics of children with autism, the experiences of parents of children with autism, applied behavior analysis and autism, the principles of behavior analysis, strategies for enhancing children’s social-communicative interactions, operating skills, and procedures. This manual is the main reference during the short-term on-site training period.
Typical ABA Programs for Children with Autism: A manual that parents can refer and adapt to their own children’s conditions. It is edited from the translation of part of the book Behavioral Intervention for Young Children with Autism, which is edited by Catherine Maurice.
Activity Schedules for Children with Autism: A translation of the book of the same name. This book instructs parents and professionals how to teach children with autism independent behavior. Once children make the connection between schedules and behavior (or activity) they may behave more like a normal child in a regular background, or even in some unfamiliar environments, once they get their schedules.
Training Process
For each of the training sessions, the process is divided into three parts. The first part focuses on theoretical training; the training manual of Guidelines for Parental Training in Home provides a framework in this session. The second part focuses on hands-on instruction on training skills and processes of teaching models, such as Discrete Trial, Incidental Teaching, Most-to-Least Prompting and Least-to-Most Prompting, the observation and assessment of behavior, etc. We also provide videotaped recordings to illustrate correct and incorrect models in the training process. The third part focuses on post-training performance, for those who will provide training by themselves at home; a video-taped follow-up service is provided by appointment. The initial training protocol is done by parents and professionals, in cooperation. Further changes to the protocol are done by the parent under the supervision of professionals. The video-taped follow-up is usually intensive at the beginning; for example, two times a week for the first month. However, it fades out as parents progress in their training performance. After two or three month’s follow-up, parents should be competent in performing training protocols independently, after which they can get help, by appointment, as necessary. For parents who do not want to provide training by themselves, we provide professional training at the rehabilitation center.
Completed Training and Results
Three training sessions have been finished and, altogether, 129 parents from 67 families (17 for the first session, 24 for the second, and 26 for the third) benefited from them. For each session, both parents were encouraged to participate. Each training session provided 32 hours of training and flexible hours of video-taped follow-up, on appointment. For the first training session, three families participated in follow-up training; for the second session, three families; and the third session, five families performed training jobs and made video-taped follow-ups by appointment. All have been very successful in training children and are satisfied with the processes and outcomes of their children. All the families who participated the training sessions thought such trainings were very helpful for them both in understanding and controlling their children’s behavior. For those (56) who did not make video-taped follow-ups, most (37) of the families also tried to perform training jobs using ABA methods at least for a week. However, only few of them persisted. The main reasons they discontinued were the problematic behaviors the children exhibited during the training processes and lack of confidence in doing such jobs. For those (35) who also sent their children to institutional training centers, the feedbacks from institutional professionals showed that these parents were more cooperative and more understanding about the training processes and training contents. An overview of the training sessions is illustrated in Table 1.
| Training Sessions |
Number of Families | |||
| Enrollment | Follow-Up | Home Training | Center Training | |
| First Session | 17 | 3 | 10 (+3) | 11 |
| Second Session | 24 | 3 | 14 (+3) | 9 |
| Third Session | 26 | 5 | 13 (+5) | 15 |
| TOTAL | 67 | 11 | 37 (48) | 35 |
Table 1: Description of parental training.
The results of the parental training sessions indicated that providing only short-term intensive training sessions on theoretical and practical issues are not enough to support a family to give long-term training to their children. They still need follow-up instruction, both on their behavioral performance and their problem-solving skills. However, such training does help parents with the following: 1) they have a better understanding about their children’s problematic behaviors as well as behavior deficits; 2) they have a better understanding of the difficulties of, as well as hope from, rehabilitation; 3) they become more cooperative with professionals if their children are institutionalized.
Professional Training Programs
Professional training takes the form of self-learning combined with Salon discussion. The learning materials are the textbooks and study materials provided by the University of Nevada, Reno including About Behaviorism, Beyond Freedom and Dignity, Radical Behaviorism, assessments and intervention strategies on behaviors, Behavior Modification, The Science of Learning, Tactics of Scientific Research, and Single Case Research Designs. Most of the Salon members are post-graduate students of the Institute of Mental Health, Peking University. The only requirement to be a Salon member for the post-graduate students is interest; a few Salon members are young psychiatrist from the same institute. Salon activity is now being held on a monthly basis; it will be increased to a weekly basis in the near future. Most Salon members also participate in at least one or two parental training sessions.
Challenges We Have
The training has just started; there are only a few families who have had the opportunity to make follow-up appointments while many others are still not proficient in training and still haven’t gotten sufficient instruction from trained professionals. Some of them might give up training themselves and depend again upon the institutions or training centers.
Even for the a few number of follow-up families, there are problems too. First, we did not have a very good assessment or evaluation system that could give us a comprehensive description of the profile of any individual child: their unique behavioral characteristics on social, language and communication, and play activity. Although each of the follow-up cases reported great progresses in attention, communication, and self-management skills, we lack an integrated evaluation of such progresses that could tell us in detail how far and to what degree they are behind. Second, we are not yet proficient at providing instruction on incidental teaching strategies. Incidental teaching strategies are very important because they provide opportunities for children with autism to learn social or communication skills in a very normalized background or context. Third, we are not very good at instructing parents to use all kinds of communicating systems, such as gestures, pictures, and communication books. Fourth, we also need continuing education on how to teach children with autism to use token systems and activity schedules.
Any help that could help us to overcome our own inefficiency would be welcome.