Skill Training for Parents with ASD Children in China

Introduction

Autism spectrum disorder (ASD) is a group of heterogeneous neurodevelopmental disorders, which are characterized by deficits in social communication and interaction, and restricted and repetitive patterns of behaviors, interests, or activities (1). The disorder brings huge economic and emotional burdens to autistic families with its ever-increasing prevalence (2,3). The key to treatment is early detection, early diagnosis and early intervention. Due to the potential plasticity of neurological development in the early stage of childhood, early standardized behavioral intervention is proved to improve the prognosis of ASD children, integrate them into society more effectively and reduce the burden of the disorder (4,5).

Currently in China, early intervention for ASD children are mainly offered by therapists from medical and rehabilitation institutions. Optimism has been further tempered by the serious shortage of qualified therapists, lack of standardized training programs, as well as unequally distributed and inefficiently used resources. Young children with ASD spend most of their time at home, where their parents would have sufficient opportunities to interact with their children. However, these families have limited access to professional knowledge and training programs of early intervention (6). Longitudinal and cross-sectional studies have showed that parental involvement is key to both short-term and long-term outcomes. Parent-implemented intervention can not only improve autistic children's social communication and adaptive behavior but also reduce challenging behavior. It also contributes to the generalization and maintenance of skills (7-19). If parents could master the intervention strategies and use these strategies with their children in daily activities, it could produce a positive effect on the prognosis of children with ASD, thus reduce parenting pressure and relieve their economic burden as well (13,15).

In recent years, the study of parent-implemented early interventions for children with ASD has become a hotspot. World Health Organization has developed a Caregiver Skills Training (CST) program for children with ASD and developmental disorders. The program aims to help low-resourced caregivers grasp the basic intervention skills (20-22). CST does not only improve the efficiency of training and benefit more families, but also improves the efficiency and enthusiasm of learning by supporting each other within the group. However, CST is generally for children with developmental disabilities, not specifically for ASD families. Early Start Denver Model (ESDM) is a representative approach of Naturalistic Developmental Behavioral Interventions (NDBIs) (23), which underlines implementing intervention in the context of naturally-occurring social activities. It is used widely for parent-implemented intervention and multiple studies of its efficacy have been published (4,5,8,14,19). We introduced ESDM since 2013, and we introduced the parent-implemented version, P-ESDM, and tested its effects on developmental and social-communicational outcomes of Chinese toddlers with ASD using the same curriculum and techniques as those in the original P-ESDM studies, and at a higher intensity and a longer duration than in the previous P-ESDM studies (8). However, we had initial problems involving a long waiting list for parents to get the P-ESDM training. We learned a great deal from the CST training approach and designed a new eight-session parental training course, which was called Skill Training for Parents with ASD Children (STPAC), based on a merger of the CST program with ESDM.

The objective of this pilot study was to determine if the skill training course would be helpful for parents to master both the basic knowledge and skills in ASD intervention.

Methods

Participants

The children were recruited from the Children’s Hospital of Fudan University from October 2017 to June 2018. Inclusion criteria: (I) the ASD diagnosis was made based on the criteria of ASD in Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) informed by ADOS-2 administration; (II) aged 18–54 months old; (III) parents were at least middle school educated, and agreed to practice planned activities with the child at least 20 hours per week.

Exclusion criteria: (I) children with syndromic ASD caused by known genetic defects or inherited metabolic diseases, such as Fragile X Syndrome, Angelman Syndrome, Prader-Willi Syndrome, tuberous sclerosis; (II) visual, auditory and physical disabilities; (III) complication with other serious chronic diseases, such as liver and kidney failure, connective tissue diseases, tumors, etc.

Procedures

We recruited eight families at each round as a group and there were two trainers in the training session. The parents attended the training course once a week. There was a total of eight sessions each lasting three hours. All the STPAC trainers had attended the introductory and advanced ESDM workshop held by Rogers’ team (one of the founders of ESDM), and learned the WHO CST training program developed by consultants to the World Health Organization and Autism Speaks. All trainers have been engaged in ASD intervention for more than 10 years.

Each session consisted of three sections (Figure 1):

Figure 1 Flow chart of parental training model.

• Section 1: Delivery of theoretical intervention knowledge. One trainer delivered theoretical intervention knowledge and showed therapist-child interaction invention videos to parents (duration: one hour).
In the eight sessions, each was implemented with independent theme: (I) building trust and routine; (II) management of child attention; (III) dealing with challenge behavior; (IV) using sensory social routines; (V) nonverbal communication; (VI) building imitation skills; (VII) using antecedent behavior-consequence technique; (VIII) verbal communication. We selected these eight themes as the basic skills for parents with ASD children, as the core deficits for ASD children are in social and communication ability. A set of therapist-child interaction intervention videos were also displayed to parents, showing how to set up an environment and intervention strategies (natural reinforcement, prompting, fading, etc.), how to address the children’s specific learning needs, how to deal with challenging behavior, as well as to notice the child’s communication and responses.
• Section 2: Video-based analysis and rating of parent-child interaction interventions. One trainer rated, commented and made suggestions on parent-child interaction videos (duration: two hours).
Parents were asked to prepare two 5–10 minutes of parent-child interaction videos. The interaction should represent typical interaction routines at home, such as toy play, social play, daily routines and activities, etc. The trainer would rate and comment one by one, correct the mistakes of parent-implemented intervention strategies, help the parents come up with solutions.
• Section 3: Demonstration and practice. Meanwhile, the other trainer demonstrated intervention skills and help parents practice in the other room (duration: two hours).
In this section, three families were invited to practice intervention skills with their own children, one family 40 minutes respectively. In this section, firstly, the trainer demonstrated how to interact with the children for about 15 minutes; secondly, the parent practiced the technique in activities while the trainer provided coaching beside them, usually for 20 minutes. Lastly, the trainer summarized the interactions, usually for 5 minutes.

Section 2 and Section 3 were carried out simultaneously. While one trainer was giving comments on the intervention videos, the other trainer was demonstrating and coaching parents to practice.

To evaluate the effectiveness of this parental training course, we designed two indexs, one was a questionnaire called Knowledge of Autism Intervention Questionnaire (KAIQ, Appendix 1) to assess parents’ knowledge about the autism intervention. The questionnaire includes 11 questions and we took the correct rate as a result. If all the 11 questions were answered correctly, the correct rate would be 100%. KAIQ is only focused on the knowledge of interventions about autism, which is different from most widely acknowledged measures (24).

The other was a Parent Skill Rating Form (PSRF) which was based on the ESDM and CST Fidelity Rating System, to evaluate the parent mastery of intervention skills and the quality of interaction. The Parent Skill Rating Form includes 11 items with the score ranging from 1 to 5 for each item. The 11 items were: (I) setting up the environment with the child face to face; (II) matching the language level with the child’s language goals; (III) adult use of positive effects; (IV) the child attention management; (V) challenging behavior management; (VI) sparing enough time to develop two-way communication; (VII) multiple varied communicative functions; (VIII) creating enough learning opportunities; (IX) sensitive and prompt response to initiative communication from the child; (X) appropriate reinforcement; (XI) using a variety of teaching techniques. Average rating score of the 11 items was taken as a result. The higher the score was, the better intervention skills the parents had. Taking item 1 as an example. Score 1= the environment is chaotic with cluttered items thus holding back the ability of the child to build up the routines or to initiate the activities; disruptive or dangerous items are not removed or the positions of the adult and child are not at the same level (adult not in front and down to the child’s level with the activity/object in between them); 2= the environment is relatively well set-up (no cluttered or disruptive items, good range of materials within child’s reach) and the positions of the adult and child are fine but the adult is only able to maintain the engagement for a short period of time (30%); 3= the environment is well set- up (no cluttered or disruptive items, good range of materials within child’s reach) and the positions of the adult and child are good (adult and child is face to face with the shared materials and activities in between them thus they can both reach and see the objects) for half of the time (50%); 4= the environment is well set-up and adult is well positioned to sustain engagement (adult and child is face to face at the same level with objects/activities in between them) for the majority of the time (80%); the adult could apply strategies to improve pacing or the quality of environmental to better support the child’s engagement ; 5= the environment is well set-up and adult is well positioned to sustain engagement (adult and child is face to face at the same level with objects/activities in between them) throughout the session (80–100% time); appropriate adjustments of the environment are made to support the engagement and initiations of the child throughout the session.

For the pilot study, there was only one doctor as a coder who participated in training with both ESDM and CST.

Statistical methods

Parents were asked to fill in the KAIQ at the enrollment with the correct rate calculated by the trainer. At the same time, we collected one 5–10 minutes of parent–child interaction video that was recorded at home. Then the fidelity scores of parents’ intervention skills on PSRF were also given by the trainer. At the end of the training course, the same procedures were applied. Paired t tests were applied to compare the baseline and outcome results. Significant level was set at P value <0.05.

Results

A total of 55 families with ASD children were recruited. These families came from Shanghai, and three other provinces, including Jiangsu, Anhui and Zhejiang. The parents all had an education above middle school. The average age of the fathers was 34.8±3.73 years old, of whom 83.6% graduated from college. For mothers, the average age was 33.4±3.68 years, of whom 72.7% graduated from college (Table 1).

Parental mastery of intervention skills: (I) for the theoretical intervention knowledge, all of the parents made progress after finishing the training course. On average, the correct rate of KAIQ completion significantly increased from 54.5% to 81.8% (paired t-test P value <0.0001). (II) For the practical intervention skills, the average fidelity scores of STPAC, increased from 2.4±0.37 to 3.5±0.31 (paired t-test P value <0.0001) (Table 2). The extent of the improvement of parents’ skills varied in different items. There were 3 items, the average score were increased more than 1.1 from baseline: Item 1 setting up the environment with the child face to face; Item 2 matching the language level with the child’s language goals; and Item 3 adult use of positive effect. And the average score in the following items had less than a 0.8 improvement from baseline: Item 6 sparing enough time to develop two-way communication; Item 7 multiple varied communicative functions; Item 8 creating enough learning opportunities; and Item 11, using a variety of teaching techniques.

Discussion

ASD is a neurodevelopmental disorder with its ever increasing prevalence in the world. A critical period of intervention for the child with ASD is when they are between 1 and 5 years old, given the rapid brain development and learning patterns occurring in these years (2-5). The growing recognition of ASD exerts major demands on early intervention services and results in calls for innovative intervention models (25-27).

However, qualified therapist resources are still insufficient in China, especially in remote, rural and suburban areas. Improving the outcomes of ASD children is tough for the parents due to the difficulty of seeking qualified clinicians, the long waiting list, the high cost of intensive therapist-delivered interventions, plus the accommodation and transportation fees for long-term rehabilitation. These challenges highlight the urgent needs for effective and efficient parental training models. Furthermore, parental involvement is critical element in both short-term and long-term prognosis of the autistic children (7-19). So, we sought to develop a practical parent training course which would help parents master the basic intervention skills, in order to both relieve the parents’ distress and to improve the outcomes of their children. By doing so, the pressure of on medical and rehabilitation institutions might also be somewhat alleviated.

The underpinnings of the STPAC course are based on ESDM and WHO CST program with some innovations and adjustments. One reason for integrating two approaches was the difficulty for parents to master all the ESDM strategies in a short time. The ESDM model is a comprehensive early intervention approach for toddlers with autism ages 12–48 months (28,29). It addresses all the developmental skills of early childhood: language, play, social interaction, joint attention, imitation, motor skills, self-care, and behavior. The teaching contents and procedures are thoroughly described. It takes time for the parents to master the ESDM strategies and mainitain them without ongoing support (28,29). Second, the WHO CST program was designed for children with developmental disorders including ASD and focuses on lack of social initiation, using eight group sessions and three individual home visits to teach caregivers skills and strategies to increase their children’s engagement and spontaneous communication (21) through play and home routines (22). We integrated these two approaches into the STPAC, which adds two ESDM techniques: Sensory Social Routine (SSR) and imitating specifically for children with ASD. We also added comments on parents’ videos of their home sessions, and added a Demonstration section to help parents master the basic intervention skills. We used the parent group format to contribute to parent learning and encouragement from each other during the course.

In this earliest step of intervention development research, we found that all parents made a significant progress in mastering both the basic knowledge and the basic intervention skills that were taught. There initial pilot result suggest that STPAC may be a promising parent training model. Next steps involve setting up a pilot randomized controlled trial to test the effects on parent skills in a more rigorous manner and to examine effects on children whose parents are receiving the training.

Acknowledgments

Funding: This project was supported by The National Key Research and Development Program of China (Grant number: 2016YFC1306205). We would like to thank the parents and children who participated in the study. We would also like to thank Sally J. Rogers, Stephanie Shire for critical reading and editing the manuscript, Andy Shih from Autism Speaks for the support to both ESDM and CST workshops, and Hailiang Guo from China Women’s Development Foundation for the support to CST workshops.

Footnote

Provenance and Peer Review: This article was commissioned by the Guest Editors (Geraldine Dawson and Lauren Franz) for the series “Implementing Autism Early Intervention: A Global Perspective” published in Pediatric Medicine. The article has undergone external peer review.

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at http://dx.doi.org/10.21037/pm.2019.08.02). The series “Implementing Autism Early Intervention: A Global Perspective” was commissioned by the editorial office without any funding or sponsorship. The authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013). The study was approved by the Ethics Committee of Children’s Hospital of Fudan University and written informed consent was obtained from all patients.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

References

1. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders (5th ed). Washington, DC 2013; American Psychiatric Association.
2. Pandey S, Sharma C. Perceived Burden in Caregivers of Children with Autism Spectrum Disorder. J Nepal Health Res Counc 2018;16:184-9. [Crossref] [PubMed]
3. Lavelle TA, Weinstein MC, Newhouse JP. Economic burden of childhood autism spectrum disorders. Pediatrics 2014;133:e520-9. [Crossref] [PubMed]
4. Dawson G, Roger SJ, Munson J, et al. Randomized, controlled trial of an intervention for toddlers with autism: The Early Start Denver Model. Pediatrics 2010;125:e17-23. [Crossref] [PubMed]
5. Dawson G, Jones EJH, Merkle K, et al. Early behavioral intervention is associated with normalized brain activity in young children with autism. Journal of the American Academy of Child and Adolescent Psychiatry 2012;51:1150-9. [Crossref] [PubMed]
6. McCabe H. Bamboo shoots after the rain: development and challenges of autism intervention in China. Autism 2013;17:510-26. [Crossref] [PubMed]
7. Wetherby AM, Guthrie W, Woods J, et al. Parent-implemented social intervention for toddlers with autism: An RCT. Pediatrics 2014;134:1084-93. [Crossref] [PubMed]
8. Zhou B, Xu Q, Li H, et al. Effects of Parent-Implemented Early Start Denver Model Intervention on Chinese Toddlers with Autism Spectrum Disorder: A Non-Randomized Controlled Trial. Autism Res 2018;11:654-66. [Crossref] [PubMed]
9. Green J, Charman T, McConachie H, et al. Parent mediated communication focused treatment in children with autism (PACT): A randomized controlled trial. Lancet 2010;375:2152-2160. [Crossref] [PubMed]
10. Shire SY, Goods K, Shih W, et al. Parents’ adoption of social communication intervention strategies: Families including children with autism spectrum disorder who are minimally verbal. J Autism Dev Disord 2015;45:1712-24. [Crossref] [PubMed]
11. Harrop C, Gulsrud A, Shih W. The impact of caregiver-mediated JASPER on child restricted and repetitive behaviors and caregiver responses. Autism Res 2017;10:983-92. [Crossref] [PubMed]
12. Stadnick NA, Stahmer A, Brookman-Frazee L. Preliminary Effectiveness of Project ImPACT: A Parent-Mediated Intervention for Children with Autism Spectrum Disorder Delivered in a Community Program. J Autism Dev Disord 2015;45:2092-104. [Crossref] [PubMed]
13. Pickles A, Le Couteur A, Leadbitter K. Parent-mediated social communication therapy for young children with autism (PACT): long-term follow-up of a randomised controlled trial. Lancet 2016;388:2501-9. [Crossref] [PubMed]
14. Colombi C, Narzisi A, Ruta L, et al. Implementation of the Early Start Denver Model in an Italian community Autism 2018;22:126-33. [Crossref] [PubMed]
15. Kruythoff-Broekman A, Wiefferink C, Rieffe C. Parent-implemented early language intervention programme for late talkers: parental communicative behaviour change and child language outcomes at 3 and 4 years of age. Int J Lang Commun Disord 2019;54:451-64. [Crossref] [PubMed]
16. Kasari C, Gulsrud A, Wong C, et al. Randomized controlled caregiver mediated joint engagement intervention for toddlers with autism. J Autism Dev Disord 2010;40:1045-56. [Crossref] [PubMed]
17. Kasari C, Lawton K, Shih W, et al. Caregiver-mediated intervention for low-resourced preschoolers with autism: an RCT. Pediatrics 2014;134:e72-9. [Crossref] [PubMed]
18. Kasari C, Gulsrud A, Paparella T, et al. Randomized comparative efficacy study of parent-mediated interventions for toddlers with autism. J Consult Clin Psychol 2015;83:554-63. [Crossref] [PubMed]
19. Vivanti G, Dissanayake C, Duncan E, et al. Outcomes of children receiving Group-Early Start Denver Model in an inclusive versus autism-specific setting: A pilot randomized controlled trial. Autism 2019;23:1165-75. [Crossref] [PubMed]
20. Dua T, Barbui C, Clark N, et al. Evidence-based guidelines for mental, neurological, and substance use disorders in low-and middle-income countries: summary of WHO recommendations. PLoS Medicine 2011;8:e1001122 [Crossref] [PubMed]
21. Hamdani SU, Akhtar P. WHO Parents Skills Training (PST) programme for children with developmental disorders and delays delivered by Family Volunteers in rural Pakistan: study protocol for effectiveness implementation hybrid cluster randomized controlled trial. Glob Ment Health (Camb) 2017;4:e11 [Crossref] [PubMed]
22. Salomone E, Reichow B, Pacione L, et al. Training caregivers to transform children’s lives. Early Childhood Matters 2018;127:74-77.
23. Schreibman L, Dawson G, Stahmer AC, et al. Naturalistic Developmental Behavioral Interventions: Empirically Validated Treatments for Autism Spectrum Disorder. J Autism Dev Disord 2015;45:2411-28. [Crossref] [PubMed]
24. Harrison AJ, Slane MM, Hoang L, Campbell JM. An international review of autism knowledge assessment measures. Autism 2017;21:262-75. [Crossref] [PubMed]
25. Parsons D, Cordier R, Vaz S, et al. Parent-Mediated Intervention Training Delivered Remotely for Children With Autism Spectrum Disorder Living Outside of Urban Areas: Systematic Review. J Med Internet Res 2017;19:e198 [Crossref] [PubMed]
26. Ramdoss S, Machalicek W, Rispoli M, et al. Computer-based interventions to improve social and emotional skills in individuals with autism spectrum disorders: A systematic review. Dev Neurorehabil 2012;15:119-35. [Crossref] [PubMed]
27. Vismara LA, McCormick C, Young GS, et al. Preliminary findings of a telehealth approach to parent training in autism. J Autism Dev Disord 2013;43:2953-69. [Crossref] [PubMed]
28. Rogers SJ and Dawson G. Early Start Denver Model for Young Children with Autism: Promoting Language, Learning, and Engagement. New York: Guilford Press 2010.
29. Smith M, Rogers S, Dawson G. The Early Start Denver Model: a comprehensive early intervention approach for toddlers with autism. In: Handleman JS, Harris SL, eds. Pre-school Education Programs for Children With Autism. 3rd ed. Austin, TX: Pro-Ed Corporation, Inc; 2008:65-101.