By Michael J. Cameron, PhD, BCBA-D
Heather E. Walker, MS, BCBA
and Taeja R. Kluge, MA
Enabling Families with Communications Technology
Dynamic changes in the areas of technology, medicine, health care reform, social media, and education will continuously impact the lives of children with autism spectrum disorder (ASD) and their families. As professionals in the field of autism treatment, we routinely monitor technology development and put to use the practical and applied knowledge that is the byproduct of recent scientific and social advances. The purpose of the current article is to discuss extant opportunities to connect the needs of children with ASD to the progressive capabilities of telecommunications and science.
George Glider coined the term telecosm to describe a world enabled and defined by new communications technology; a global environment in which human communication is universal, instantaneous, and unlimited in bandwidth. The use of this broadband technology has the potential to close the service gap for families living with ASD by expediting the flow of communication and information.
As of 2011, more than 99% of households in the United States have access to at least one wireless broadband provider, and a vast majority of American households regularly use the internet via desktop, laptop, and tablet computers, smartphones, and even e-readers. The variety, intuitive design, and decreasing costs of available devices have facilitated internet access for people of all ages, educational and socioeconomic backgrounds. Given the increasing prevalence of autism, coupled with the diverse and significant needs of children with ASD and their families, the practicability of technological supports is timely.
Needs of Children
Among the population of children with ASD over 90% present with sensory abnormalities. Additionally, 60%-80% have motor complications (e.g., hypotonia, gait problems, apraxia), 55% have disturbances in their sleep/awake cycles, 45% have gastrointestinal disturbances, 10% to 60% have a seizure disorder, and 70% have a comorbid psychiatric diagnosis (e.g., anxiety disorder). As a result, the unique and complex presentations of children with ASD necessitate engagement with interdisciplinary teams to guide development. More specifically, many children require the direct involvement and oversight of speech and language pathologists to support language and communication development; occupational therapists (OTs) to address motor skills such as posture, balance, and handling common objects (e.g., cups, utensils, writing implements); physical therapists to address issues involving physical systems (e.g., low muscle tone); board certified behavior analysts (BCBAs) to optimize children’s capacities and motivations to engage in the learning process; developmental pediatricians to assess global progress; psychiatrists to treat children who require pharmacological interventions to address behavioral regulation; and extended family (e.g., parents, siblings, grandparents, aunts, and uncles) to maximize children’s opportunities for engagement at various times and in diverse environments.
Families’ management of interdisciplinary teams demands a significant number of personal resources, the diplomacy skills of emissaries, and the organizational skills of project engineers. Consequently, a premium is placed on methods that can coordinate and ease the demands inherent in the management of therapeutic services. The internet, along with proper bandwidth capacity and various technological resources for teaching and supporting children with ASD, offers liberating solutions. Listed below are just three examples of how improved technology and bandwidth capacity can affect service delivery.
Technological Solutions for Autism Telehealth
According to the newest estimate released by the U.S. Centers for Disease Control and Prevention in March 2013, about 1 in 50 children has an autism spectrum disorder. The implication of this statistic is that there is a sizable demand for therapeutic services and the skills, knowledge, and abilities of the aforementioned professionals. Finding appropriate professionals (and comprehensive teams) that can address their children’s unique needs is challenging for families residing in metropolitan areas. Parents of children with ASD in rural areas are impeded to an even greater extent. In illustration, the state of Wyoming has only four BCBAs. There is a growing consensus that the supply of providers across the professions is woefully inadequate to meet the needs of the expanding population of children with ASD. This is especially true in the 32 states where laws related to autism and insurance coverage require the delivery of services.
Telehealth, while not the single solution to meeting increasing service demands, can make important contributions to addressing service gap problems. Telehealth is the use of electronic information and telecommunications to facilitate remote clinical support and public education. Technologies used for such purposes include videoconferencing, the internet, store- and-forward imaging, streaming media, and satellite and wireless communications. The telehealth model provides three fundamental benefits.
Improved access: remote consultation allows professionals such as BCBAs, speech and language pathologists, and physicians to work outside the boundaries of their offices, and, if allowable, even beyond state borders. Obstacles to treatment (e.g., bringing children with behavioral excesses into unfamiliar environments) can be overcome.
Cost efficiencies: the telehealth model reduces costs and increases efficiencies through better management of an interdisciplinary team, reduced travel time, and lower travel- related expenses.
Meeting consumers’ needs: the time and effort involved in coordinating treatment plans involving a large number of professionals has reduced the ability of many family members to earn a living. More specifically, it is not uncommon for at least one family member to suspend employment and career, abandon interests, or postpone personal pursuits in order to coordinate services for children with autism. Families of children with ASD would benefit greatly from solutions that simplify the delivery of needed services, thereby allowing them to address other essential needs.
The telehealth model of service facilitates the importation of professionals into families’ homes to
(a) provide individual consultation (e.g., with BCBAs) or group consultation (e.g., family meetings with speech pathologists and language pathologists, and OTs),
(b) monitor children’s progress via direct observation,
(c) coach and guide parents in their interventionist roles, and
(d) provide personalized support from paraprofessionals (e.g., 1:1 home-based instructors) working directly, albeit remotely, with children in their homes.
Internet-Based Clinical Technology
Although we have access to reliable assessment tools to diagnose a child (Autism Diagnostic Observation Schedule), there is a wait time (e.g., 6 to 9 months) to get an appointment with a clinic or hospital-based diagnostician, and another 30-day wait to receive the findings and recommendations. Seven to ten months of waiting is clearly detrimental.
In an effort to resolve this issue, the Wall Lab in the Center for Biomedical Informatics at Harvard Medical School has begun using store-and-forward technology to capture on video very specific behaviors exhibited in children’s natural setting and subsequently forward the video, via the internet, to diagnosticians for immediate evaluation. The technology improves families’ access to professional services, creates cost efficiencies, and meets community needs. More importantly, the technology significantly impacts the latency between a “suspected” problem, diagnosis, and the onset of essential services. Families do not have the luxury of time.
Health informatics refers to the acquisition, storage, retrieval, and use of health and biomedical information by families, healthcare providers, and researchers. Hospitals and healthcare providers are moving very quickly toward the use of cloud-based health informatics technologies to collect and share information with patients, families, and other providers in secure, protected environments. Access to comprehensive electronic health records improves the quality and sophistication of care, increases the ability of providers to consult and collaborate with each other, facilitates interaction with and participation by family members caring for their loved ones, and promotes continuity of care regardless of a family’s geographic location.
Access to comprehensive health records has several implications for families of children diagnosed with autism spectrum disorders. First, storing data related to diagnosis and treatment in a secure “cloud environment” allows families to receive services from new professionals without repeating time-consuming, costly, and redundant evaluations and assessments; rather, they may merely grant new professionals permission to access the existing body of data on their child.
Additionally, cloud-based electronic health records contain a timeline of all assessments, evaluations, treatments, physicals, and biomedical testing of children; therefore, they save families the time and energy of collecting, organizing, and storing paper documents and files. Finally, families can upload documents and information they believe is relevant and pertinent to their child’s electronic health record, monitor what other providers have uploaded, and manage access to information about their child.
To respond adequately to the ever-growing service needs of those living with autism it is imperative to use currently available technology. Expanding the use of telehealth, internet-based clinical technology, and health informatics can make services available to the greater public, particularly those most underserved. Utilization of remote capabilities and innovative products will lead to the integration and amalgamation of disciplines and services, building a hyperconnected, global society that can better support children with autism spectrum disorders and their families.
Michael J. Cameron, Ph.D., BCBA-D is the Chief Clinical Officer for Pacific Child and Family Associates
Heather E. Walker, M.S., BCBA is the Clinical Director/New York for Pacific Child and Family Associates
Taeja R. Kluge, M.A., is a Clinical Supervisor for Pacific Child and Family Associates
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