Parents of children with autism spectrum disorder (ASD) are among the most distressed group and display more affective symptoms when compared with parents of both typically developing children and children with other developmental delays (Estes et al., 2009; Davis & Carter, 2008). Why is this? Could it be that many parents face daily behavioral challenges- intense tantrums causing high levels of anxiety and worry about what will happen at the grocery store, inappropriate communication and play behavior which prevents carefree playdates at the local park, or safety concerns causing parents to constantly be on high alert? Others face pressure to close the gap between their child’s skill deficits and other children his age. Some children have expansive skills but socially, they just cannot quite get to a point of making lasting friendships or are getting bullied every day of middle school. ASD isn’t one thing for parents. Each parent experiences it differently. One thing, however, which we’ve seen time and time again at Rethink, is that parents try their hardest to get help for their child while putting themselves second…or third…or fourth…or last.
The words “help” or “support” take on many meanings for parents of a child with ASD. Parents pursue help from educators to help their child learn, from healthcare providers to ensure their child’s wellness, and from extended family members to promote familial engagement. One area of support that parents often need is training – the true “how-to” so they themselves can generalize their child’s skills after the therapist leaves at the end of the day, after services are reduced, or even fill that primary role of “therapist” if their child does not receive direct therapeutic services. In a large randomized trial of children with ASD, Bearss and colleagues (2015) found that 48% of parents who underwent 24 weeks of behavioral training reported improvement in their child’s behavior as compared to 32% of parents who received 24 weeks of just basic education on ASD. Additionally, an overall improvement in behavior of nearly 70% for the training group as compared to 40% for the education-only group was measured by the researchers. Behavioral training included determining the function of their child’s behavior, implementing visual schedules, providing positive reinforcement for appropriate behavior, techniques for promoting compliance as well as new skills (e.g., communication and daily living) and how to maintain such gains over time. Direct instruction, video examples, practice activities, and role play with feedback were all used to promote parental skills. By contrast, parent education included sessions and manuals addressing evaluation, developmental changes in ASD, educational planning, advocacy, and current treatments.
Why is parent training so important? For one, Dr. Kara Reagon, Autism Speaks Associate Director for Dissemination Science, states that “It’s telling us that simply educating parents about autism isn’t enough. They really need help in the home and the community, and there’s a need for more effective parent training” (Reagon, 2015). Two, the need for generalization of skills as well as the fact that therapist-led services are finite in duration means parents must be involved early and often, and equipping them with tools and best-practice strategies can empower them to facilitate gains for their child on an ongoing basis.
Strong parent training significantly enhances a child’s overall learning experience, providing more teachable moments and consistency across all environments. What happens when a parent lives in a remote area, far away from a university or from agencies that are offering services? Or perhaps their child is receiving quality applied behavior analysis (ABA) services but their job prevents them from observing or receiving feedback from the therapist during therapy. Technology can provide a cost-effective, timely, and simple solution to address these challenges. Video modeling and performance feedback are effective methodologies to promote skill acquisition of individuals supporting children with ASD (Catania, Almeida, Liu-Constant, & Reed, 2009; Digennaro-Reed, Codding, Catania, & Maguire, 2010; Leblanc, Ricciardi, & Luiselli, 2005). Video modeling and feedback can be delivered remotely and conveniently. At Rethink, an educational technology company that provides web-based resources to educators and parents, we’ve been able to work with parents across the world, providing them with opportunities to not only watch/mimic short clips of skilled clinicians teaching a myriad of skills, but also to deliver teleconsultation to provide feedback on their therapeutic skills (live or taped), clarification/redirection during incorrect performance, reinforce progress, and assist with objective progress monitoring. When parents learn to promote skill acquisition and effectively address inappropriate play behavior or communication, play dates, trips to the grocery store, and everyday family life become a reality.
Due to successfully reaching and supporting a wide range of families through Rethink, we began partnerships with companies, large and small, to offer the resources and tools to their employees. Parents of children with ASD and other developmental disabilities are now able to access parent training and participate in individualized parent coaching via teleconsultation at no cost to the employee and with no eligibility requirements. Why bridge this gap between parent training and employers? In the age where ABA services are still costly and difficult to acquire, this model provides an opportunity that many parents would not otherwise have. Both employers and employees experience the impact on job performance, attendance, and overall bottom line due to the demands and stress of having a child with ASD. Caring for a child with a developmental disability can lead to up to 250 hours of lost work time and $3,000 – $5,000 in lost productivity. As it relates to employment decisions, 58% of parents surveyed did not take a job, 23% did not take a promotion, and 53% worked fewer hours to accommodate needs of their child (Baker & Drapela, 2014; “Therapies for Children with Autism Spectrum Disorder,” 2012). Ironically, Baker and Drapela (2010) found that workplace participation is actually associated with increased social support and decreased feelings of isolation, improved self-esteem, and an identity outside of being a parent of a child with a disability. If employment is a protective factor, something needed to happen to address this predicament experienced by so many parents.
According to Milt Ezzard, Head of Benefits at Activision Blizzard, “We’ve found that highly specialized and targeted programs, like Rethink, are a much better fit for our employees and their families. As a result of moving away from outdated and costly clinical solutions, we’re seeing increased engagement across all our programs and greater employee impact.” Parents ultimately need an easy way to support their children and themselves, and technology is an answer. Going to work every day, having access to free supports, and being empowered to effectively care for their child outside of work, in turn, benefits them in the workplace as well. It just makes sense then for an employer to facilitate support for these parents. Delivery of this tailored parent training and support translates into a win-win-win for the employer, employee, and their child.
Baker, D.L., Drapela, L.A., (2010). Mostly the mother: Concentration of adverse employment effects on mothers of children with autism. The Social Science Journal, 47, 578-592.
Bearss, K., Johnson, C., Smith, T., et al. (2015). Effect of parent training vs parent education on behavioral problems in children with autism spectrum disorder: A randomized clinical trial. JAMA, 313(15),1524-1533.
Catania, C. N., Almeida, D., Liu-Constant, B., & Reed, F. D. D. (2009). Video modeling to training staff to implement discrete-trial instruction. Journal of Applied Behavior Analysis, 42(2), 387-92.
Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal of Autism and Developmental Disorders, 38(7), 1278-91.
Digennaro-Reed, F., Codding, R., Catania, C. N., & Maguire, H. (2010). Effects of video modeling on treatment integrity of behavioral interventions. Journal of Applied Behavior Analysis, 43(2), 291-5.
Drapela, L.A., & Baker, D.L. (2014). Correlates of negative experiences with health care providers and health care insurers among caregivers of children with autism spectrum disorders. Sage Publications, 4(3), 1-13.
Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, XH., Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism : The International Journal of Research and Practice, 13(4), 375–387.
Leblanc, M., Ricciardi, J. N., & Luiselli, J. K. (2005). Improving discrete trial instruction by paraprofessional staff through an abbreviated performance feedback intervention. Education & Treatment of Children, 28(1), 76-82.
Therapies For Children With Autism Spectrum Disorder. (2012, May). Retrieved from http://www.businessgrouphealth.org/about/evidence-deliverables.cfm
Training Helps Parents Reduce Challenging Autism Behaviors. (2015, April 21). Retrieved from Kara Reagon, Ph.D, BCBA-D.