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Technologies to Lessen the Distress of Autism

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By Ron Oberleitner, CEO – Behavior Imaging

 

This blog shares a title with a paper my colleagues and I wrote and published in Journal of Aggression, Maltreatment & Trauma Vol. 12, No. 1/2, 2006. In it, we explored aspects of autism that make it a potential traumatic stressor for family members and may put them at risk for Posttraumatic Stress Disorder (PTSD). It has been 11 years since our paper was published (actually, the paper was written in 2004), and trauma and distress from autism is still prevalent, although aspects of what is considered autism today is proving to be more varied. In this post, I would like to summarize that paper and update some of its findings to 2017.

 

Increased Autism Incidence

The last few decades have seen an explosion in the frequency of autism-related disorders. In the 1970s, the incidence was estimated at 1 in 5,000 births (Gerlai, 2004). In 2000, the number was up to 1 in 149 births (Centers for Disease Control and Prevention, 2000). Most recently, on March 27, 2014, the Centers for Disease Control and Prevention (CDC) released new data on the prevalence of autism in the United States. This surveillance study identified 1 in 68 children (1 in 42 boys and 1 in 189 girls) as having autism spectrum disorder (ASD).

 

 

Lack of Resources

While the incidence of autism has risen precipitously in the last decade, one thing hasn’t changed much. It is still enormously expensive to provide ongoing education and therapy for autistic children. One proven treatment for autism is early and intense educational intervention. However, for many parents, that intervention is cost and/or distance prohibitive. In some areas, there are few or no options for after-school care or babysitting.

 

Families at Risk

The increased incidence of autism paired with an ongoing dearth of professional resources means that families often wait for weeks or months for an appointment and must travel to the nearest major medical center for care, sometimes over great distances. As they wait for meaningful care and instruction, the family faces a host of risks.

 

In the paper, we said:

The constant vigilance to protect one’s child, one’s family, and one’s partner as well as one’s self can leave parents irritable and on edge indefinitely. These symptoms may cause clinically significant problems in daily social and occupational functioning, both from the perspective of PTSD and other physical and mental/behavioral health perspectives.

 

How autism puts the family at risk:

  • Chronic depletion of resources
  • Preexisting vulnerabilities may rekindle
  • Hyperactivity/lack of sleep
  • Feelings of loss
  • Harmful and/or unpredictable behaviors
  • Environment of captivity/isolation
  • Risk for family violence
  • Lack of understanding by the general public
  • Risk of marital conflict or divorce

 

Families need more frequent, convenient, and affordable access to autism care professionals to minimize the risk of trauma. For most of my career, I have focused on meeting that need with technology.

 

Technology to Address Distress

As a starting point around 13 years ago, we looked at the emerging technology categories impacting medical care and special education that were trending in 2004. Technology categories such as telehealth (aka telemedicine), teletherapy, electronic health records, online communication platforms, computer instruction software, and augmentative communication devices, and distance learning were all in relative emerging stages. Several of these have since become ubiquitous, and some are just hitting now as a sensible use of technology to increase access to care.

 

 

Telehealth and Autism

In the paper, we defined telehealth as “the use of electronic information and telecommunications technologies to support long-distance clinical health care.” Today, the potential for telehealth to become the standard of care is greater than ever. Everyone carries powerful technology that can be a vehicle for healthcare – a smart phone. Powered by smart phones, telehealth can help individuals with autism around the globe get diagnosed faster and have access to more affordable ongoing treatment. (In the case of Behavior Imaging, we have shown that it can be 40 percent cheaper and 100 percent faster.) Since this paper, millions of dollars have now gone towards researching value of Telehealth. Conditions are right for this type of behavioral healthcare to take over.

 

Smartphone cameras can capture autistic behaviors as they happen. Autism experts can review footage remotely and provide recommended interventions. Parents and caregivers can review video lectures or take online courses to improve their care. Families that are isolated in rural areas could plug into a host of resources via our current proliferation of information technology. As we said in the initial paper, “Information technology can increase communication, speed research, and coalesce different groups’ efforts to support families and advocate for changes in the caliber of care and services.” The time has come to harness this incredible potential for autism care.

 

 

An Exciting New Direction for Autism Diagnosis and Treatment

Telehealth is not a magic wand that will make autism go away, but it can provide resources that help reduce distress in the lives of people with autism and their families. It is an exciting new direction for the medical industry that could usher in a new era of more frequent, convenient, and affordable care. New and now readily accessible technology categories that did not exist in 2006 (examples like cloud computing, virtual reality, intelligent robots, use of big data, and AI or deep learning) are now readily available and will only accelerate the ability for families, and their loved ones with autism, to get the healthcare access they need, regardless of how severe their disability or where they live.

 

To me, the most exciting times are ahead.

 

Connecting Brain Health and B.I.

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Our CEO is joining other nationally-renowned speakers at the December 6-7th SharpBrains Virtual Conference 2016. Ron Oberleitner will join 40 world-class experts and innovators to discuss leading-edge insights, tools and initiatives to “Reinvent Brain Health in the Digital Age.”

Our company’s talk is entitled ‘Better Ways of Assessing Brain Health for People with NeuroD_____ Conditions’. Ron will discuss why and how Brain Health of our loved ones and friends who have either NeuroDevelopmental (e.g. autism) or NeuroDegenerative health conditions (e.g. Alzheimers, Dementia) can be best understood, and thus better treated, using ‘imaging’ tools like Behavior Imaging to connect patients from their natural environments to expert doctors and researchers, who could be anywhere in the world. Talk will share examples of B.I.’s evidence-supported research to validate how this already happening.

You can register for this ‘virtual’ conference by going to the  Summit website, and note there is 35%-off promotional code: sharp35

Story From the Field: Family’s Outlook Changed Through Video Journaling

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As we celebrate the completion of important research on our new Med smartCapture mobile app for medication management, we look back at one of the important moments that showed the usefulness of the video self-reports the new app enables.

Download docx Press Release

In 2010, Matthew, then a junior high student, was struggling with how to understand his teachers’ instruction, interact with his peers, and communicate his needs to those he trusted. He was discouraged and frustrated, and, what is worse, he was isolated in his frustrations because his autism hindered him from communicating his feelings and thoughts to those around him. His mother, Diana, was equally discouraged and was desperate to understand what her son was going through and how she could help.

At the recommendation of their doctor and a program they were a part of as a US military family, Diana and Matthew looked into a program that allowed Matthew to create a private video journal within a secure online platform, which he could then share with his doctor. And that was the beginning of a year-long healing process for both Matthew and Diana.

The program used Behavior Imaging’s Behavior Connect platform to allow Matthew to securely connect with his doctor. The platform also aimed to help parents collect video data of their child’s behavior and let their doctor organize, tag, and store the videos, therefore assisting their doctor in assessing and treating behavioral disorders. Thanks to the positive results families and doctors have experienced through programs like the one Matthew and Diana participated in, Behavior Imaging is working on a new version of the app available to any family in the same situation. Last month, thanks to a grant from Autism Speaks, Behavior Imaging concluded tests on the Med SmartCapture app, a mobile app that takes the same technology Matthew and Diana used a step further by transforming it into a smartphone application that brings that interactive element between patients, caregivers, and their doctors.

Almost immediately upon using the platform to interact with their doctor, both Matthew and Diana saw the benefits of being constantly supported by and connected with their doctor, even when trips to the doctor’s office were impracticable or impossible. “I knew that the doctor was available, pretty much at all times. We had the ability for Matthew and us to have that face-to-face connection,” Diana says.

As Matthew and Diana continued to interact with their doctor through the program, Matthew found he was able to communicate more, allowing Diana and their doctor to see and hear just how difficult our world is to a person with autism. It was the beginning of a new and better stage for their family as Matthew was able to communicate his needs, thoughts, and emotions, and Diana and others were able to see how Matthew was struggling and how they could support and help him.

“We were getting somewhere,” Diana says of the year they spent using Behavior Imaging’s technology. “It is an ongoing process (and major work) to support, learn, and understand how to communicate with someone with autism. Having the technology was priceless.”

To Ron Oberleitner, founder and CEO of Behavior Imaging, stories like Matthew and Diana keep him and his company going. “There is such a challenge to get access to one’s doctor outside of office visits, and so it is always exciting and important when someone makes progress the way Matthew did from home,” he says. “We’re thrilled that our technology has made such an impact on his family.” The future potential of the app is just at the beginning, Mr. Oberleitner says, as millions of other families living with autism may find the app just as helpful.

Behavior Imaging Solutions is the culmination of over ten years of research by Ron and Sharon Oberleitner, whose son was diagnosed with autism in 1996. Founded in 2005, Behavior Imaging was recently awarded a $2.7 million grant by the National Institute of Mental Health to research Behavior Imaging technology for earlier diagnosis of autism and transforming pharmaceutical trials. The Behavior Connect platform is a solution to a wide array of problems in special education and healthcare, including Naturalistic Observational Diagnostic Assessment (NODA), pharmaceutical clinical trials, annd clinical staff support, training, and evaluation.