Being the parent of a child with autism has been described as an exhausting, exhilarating, and lonely roller coaster ride. It is a life of both strict routine and unpredictable stresses and joys. Many children who suffer from the condition will carry its symptoms through life, which means their parents will as well.
For caregivers such as the woman who described the rollercoaster above, the ongoing nature of the cycle means there’s a need for continual medical and therapeutic assistance. Generally, that care is provided by specialized school and home-based programs.
Not everyone, however, has ready access to such facilities. Families in remote and rural areas who care for a child with autism face the same challenges as their suburban peers, but with the added burden of much more limited support resources.
With those families in mind, some physicians in the U.S. are employing video conferencing technology to provide care online. Already their telemedicine services are improving patient outcomes for some autism sufferers, and they could encourage caregivers to gather online and share their collective stories.
Autism Affects One in Every 41 U.S. Children
Autism affects 1 in every 41 U.S. children and is most common in boys. The term covers a range of conditions that center around social skills, speech and nonverbal communication, and repetitive behaviors. Those diagnosed with the condition will most likely carry their symptoms throughout life, though each person faces a unique combination of challenges, and sometimes strengths–the condition can, for example, lead to an advanced ability for intense, prolonged concentration.
The negative impact on a child’s social skills means that the diagnosis and treatment of autism require observation and intimate interaction–you can’t simply ask a child what they’re thinking or feeling. This, in turn, means that the use of remote telehealth technology is more complex than it is in other applications, such as emergency medicine or psychological therapy. Researchers from the University of Iowa Stead Family Children’s Hospital, however, have launched a study to prove that remote therapies can be effective at delivering in-home care.
Weekly Telemedicine Improves Patient Outcomes
The University of Iowa experts have been using video conferencing connections to observe children in their homes and during their regular routines. Using technology similar to the common Skype call you’d place to a friend through your webcam or smartphone, they’ve been able to help parents identify the potential triggers of problem behaviors.
The researchers and autism experts meet weekly with families for an hour-long session in their own homes over a video connection. The program lasts for nine months, and every session can be recorded and results charted over time. The video visits can also be completed at a local health clinic, which creates the possibility of having a family doctor or nurse keep track of progress as well. In both instances, the remote experts can be active participants–asking questions and using toys or flash cards as stimulants–or silent witnesses.
So far, only 17 at-home families completed treatment, but the results are promising. In 86% of cases there was a noted reduction in problem behavior, a rate comparable to that expected from a series of in-person visits.
If the results of this study are reproducible with larger sample sizes, it could help prove that telehealth is a viable way to treat autism symptoms. That, in turn, would mean a whole new form of support–in-home support–would be available to families and caregivers. And that’s a huge step forward when it comes to the treatment of a condition that can make just getting a child dressed, in the car, and out of the car at a doctor’s office a huge ordeal.
A Video Conferencing Network of Support
A key component of the University of Iowa study was the way it empowered parents to better care for their own children. That empowerment could potentially allow them to help others faced with the same challenges in an ongoing social network of self-support. Perhaps, after the initial six- to nine-month medical program was complete, the caregivers could be encouraged to join an online video chat group to maintain behavioral improvements and offer support and tips to others in the same situation.
Such self-help groups are common in the brick-and-mortar world, but when staged online they have the potential to link people across the country. VC Daily has explored how virtual support groups could help people through times of grief or major life changes, such as becoming a parent, and they’d be just as beneficial to anyone riding that lonely roller coaster of caring for an autistic child.
If the medical science is proven viable (we’re going to say “when,” because we think the evidence is pretty compelling that this method is effective), video conferencing and telemedicine will make a big difference in the lives of both autism sufferers and their supporters.
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