Kamisha Herrera knew something was wrong. Her son, Thomas, was 21/2 years old, and he still wasn’t talking.
“He would say ‘Dad’ and make noises, but that was it,” the Globe resident said.
As early as 11 months, Thomas displayed unusual behavior. He didn't like the textures of most food but relished eating dirt, sticks, leaves, grass and rocks.
Many times a day, every day, he’d jump up and down, pumping his arms up and down, squealing with his mouth open wide.
“There’s a great difference between a toddler behaving that way because they are excited over something versus doing it constantly,” she said. “He’d be watching TV, and the flapping and the jumping would start randomly.”
For three years, Herrera took Thomas to one medical professional after another: two psychiatrists, a psychologist, a speech therapist, a physical therapist and an occupational therapist. They all said Thomas was a typical toddler.
This year, at age 4, Thomas was diagnosed with autism at the Southwest Autism Research and Resource Center, a Phoenix-based autism research non-profit.
Because of the shortage of specialists, it can take as long as six months just to get into a place like Southwest Autism.
To help with the problem, the center is developing a smartphone application that specialists would use to diagnose autism based on videos of children’s behavior uploaded onto a website.
The app, the Naturalistic Observation Diagnostic Assessment, could shorten the diagnostic process so children can get treatment earlier, especially in rural communities where skilled specialists are difficult to find. If the app is successful, the diagnostic process that took Herrera three years could take a few weeks.
Parents still would have to arrange follow-up treatment and care with specialists, and there would be an unknown cost for the app-based diagnosis.
The autism center, which is funding the app development with a $2.2 million grant from the National Institutes of Health, is collaborating with Behavior Imaging Solutions, a Boise, Idaho, medical-technology company, and the Georgia Institute of Technology in Atlanta.
Christopher Smith, the autism center’s vice president and director of research, said that testing will begin this summer with a few families and that the app will potentially be available as early as 2014.
“This is an exciting opportunity for the community to find new ways to at least help lower and help reduce the disparity of health care in this country,” said Andy Shih, senior vice president of scientific affairs at Autism Speaks, one of the world’s largest autism-advocacy organizations.
The use of smartphone apps in medicine is a growing trend.
Numerous apps exist for people with diabetes, allowing them to record blood-sugar measurements, track blood pressure and calculate insulin dosages. A Swedish company, iDoc24, recently developed STD Triage, an app to help doctors diagnose sexually transmitted infections using photos taken with smartphones.
“(Using smartphone apps) is a concept that is really gaining a lot of traction in the public health world, so from that perspective, this particular project is certainly a very welcomed addition,” Shih said.
Signs of autism
People with autism have impaired social interaction. They may not interact with others during playtime, and they can appear not to be aware someone is standing in front of them.
Communication challenges, such as significantly delayed speech or incoherent babbling, are common with the disorder. It is not uncommon for a person with autism to never communicate audible sounds, or to develop speech much later than most people.
Restrictive and repetitive behavior, such as banging one’s head on a wall or constantly stacking and aligning objects, is another common symptom of autism.
“He walked on time, but his speech was very delayed. His eating habits were sometimes weird,” Herrera said of her son. “I was frustrated, and it was hard. I was scared because I didn’t know what was going on, and I knew he was not doing things.”
About one in 64 children in Arizona has an autism spectrum disorder, higher than the national level of one in 88 children, according to the Centers for Disease Control and Prevention.
A lack of specialists
Smith said it’s common for doctors — even specialists — to be cautious in diagnosing autism.
There’s no blood test for the disorder, which is based on observing certain behaviors.
“Some are hesitant to say ‘autism’ because they don’t want to be wrong. They think they’re doing the parent a favor,” Smith said. “One of the reasons might be they don’t want to alarm parents. They don’t want to be wrong and look at the child a year from now and (have) everything seem to be fine.”
Specialists go through years of training, supplemented by continuous education. Now, medical professionals are increasingly able to recognize autism through wider screening and process improvements.
But with only about five specialists in Arizona, autism-center officials said children aren’t being diagnosed and treated quickly enough — and time is of the essence when it comes to autism.
Early diagnosis allows children to enter therapy sooner and decreases the impact of the speech, social and physical challenges that many children face when they go years without treatment, Smith said.
“They’re losing valuable intervention time. We want to connect parents with professionals as soon as possible,” Smith said.
Ideally, that happens before a child turns 2.
Herrera’s son, Thomas, and daughter Jayah, almost 3, were diagnosed only this year as autistic.
“I’d been trying to get them diagnosed since they started walking,” she said.
The average diagnosis for a child with autism is made when he or she is almost 6 years old, according to the CDC. Autism-center officials said that time line is too long, and they hope this app helps cut diagnosis time significantly.
“What happens now is a parent gets concerned with their child’s development and the things they are seeing the child do in the home, so they go to their general pediatrician and they say, ‘Something’s not quite right,’ ” Smith said. “Now, many times, pediatricians still say, ‘He looks physically healthy. Let’s give him a couple more months of development, and let’s see what happens.’ ”
The parent often returns a few months later with the same problems and sometimes additional issues, Smith said. It can take months before the pediatrician refers the parent to a specialist — and even longer to get an appointment with the specialist.
“They go call that person and get on a wait list that can be up to six months before they are seen by this person,” Smith said. “It can take up to almost a year at times for parents to get connected and get the diagnosis.”
The specialist then does an evaluation but still may not provide a diagnosis.
It is particularly a problem in rural areas.
Dr. Monette Pierre-Louis, a general pediatrician in Lake Havasu City, said getting a diagnosis in a rural community can be close to impossible for some parents. She sees about 10 kids each month whom she refers to an autism specialist in the Valley.
“People here know there’s not a lot of specialists. They know if something is happening, they’re going to have to go to Phoenix,” Pierre-Louis said.
The challenges of traveling include the hassle of a long car drive and the cost of gas, hotel and food.
How autism is diagnosed
Dr. Daniel Kessler, medical director at Southwest Human Development’s Children’s Developmental Center, is trained to diagnose autism. The lobby of his central Phoenix office is filled with toys, color and reading materials to occupy children while they wait to see him.
In some instances, Kessler can look at a child in the waiting room and tell that he or she is likely autistic before officially beginning an assessment.
Kessler observes children who might be autistic in his Phoenix office through a two-way glass. Parents interact with their children in a room with brightly colored toys, a dollhouse, building blocks and a kitchen set, among other things. Kessler and his staff look for behaviors that can be signs of autism, such as lack of emotion.
He also looks for repetitive physical signs such as hand-flapping and rocking as well as arranging and rearranging objects. An absence of physical speech is common in autistic children, he said, and when speech is present, it is often limited to repeated sounds, words or phrases.
Kessler said he tries to get kids in as quickly as possible, but high demand often makes that difficult. He usually is able to make a diagnosis after a child’s first visit.
How the app will work
Recording behavior and sending video to doctors can be complicated, Smith said. Current smartphone recording devices don’t always easily upload — if at all — to the website specialists will use.
And recording with a camcorder takes time and steps that Southwest Autism officials hope to eliminate.
After the app is developed, when a parent notices his or her child is not showing signs of development, the parent and child can visit a pediatrician.
If the pediatrician is not trained to diagnose autism but suspects that the child has the disorder, the doctor will give the parent information about the app.
The information will tell parents what types of behaviors to look for, Smith said. Parents will then record four 10-minute videos of the behavior with a smartphone before uploading them to a website. Specialists will be able to access the video immediately.
After viewing the videos, specialists will go through a checklist used for diagnoses. The specialists will then send a report to a pediatrician, who will deliver the information to the parent.
“We estimate that, when it’s all said and done, that making the video, uploading it to the website and getting the report back to the doctor could take less than a month,” Smith said. “I think probably for 60 percent of the kids that are going to be referred to specialists, the diagnosis will be made easily, because they are going to have enough behaviors that are going to support a diagnosis.”
An additional 20 percent will require more video analysis, Smith said. And the remaining 20 percent will likely require an in-office visit before a diagnosis is made.
Smith said specialists from one part of the country will be able to diagnose children thousands of miles away.
Video will allow specialists to see more patients in a shorter time, Smith said. They can log onto the website to analyze video that could provide answers to questions they often ask during in-office visits.
“The practitioner can assess more patients in a day than they could if they were seeing people in the office,” he said.
Persistent challenges
After a diagnosis, a significant problem remains: Most rural families will still have to travel to metropolitan areas for treatment.
“Once they get the diagnosis, we try to work with the providers to provide the care that they need here,” said Pierre-Louis, the Lake Havasu City pediatrician. “But if it’s more therapy-based care, that’s still something they’d have to do in Phoenix.”
Shih, from Autism Speaks, said developers should be mindful of the challenges that families in rural areas may face.
“Having access to a cellphone signal is going to be important,” he said. “Coverage, as far as a mobile network, especially in remote areas where this is supposed to be most helpful, could be a concern.”
And not everyone has a smartphone. The learning curve could be steep for some parents to record video and upload it to a website.
“The parent may need the additional support to capture meaningful behavior or meaningful clips to share with the a professional,” Shih said.
Smith recognizes the challenges of access in rural, low-income communities but hopes patients’ pediatricians can help with them, including uploading the video.
Developers are optimistic that they can address challenges as they surface. They want to get the app to parents as quickly as possible, said Ron Oberleitner, chief executive and founder of Behavior Imaging Solutions.
“This could really change the face of how autism is diagnosed,” he said.
(Source: azcentral.com)
No comments:
Post a Comment