When Matthew Gonzalez was 8 months old, his pediatrician noticed that he was having difficulty moving. Matthew lacked muscle tone and wasn’t breastfeeding properly. His grandfather, a medical pathologist, suggested Matthew’s parents, Oscar Gonzalez and Mercedes Ubaga, take him to what was known then as Miami Children’s Hospital. He was evaluated there and eventually diagnosed with a severe case of autism. He has been a patient there ever since.
Matthew, now 8, does not speak. He struggles with basic motor skills. He can’t dress, bathe, or go to the bathroom by himself. He also suffers from epilepsy, which leaves him prone to seizures. Matthew currently attends Our Pride Academy, a special-needs school for people from 5 to 35 years old.
“I would give anything just to hear my son say my name,” said Gonzalez, 38.
The most recent estimates by the Centers for Disease Control and Prevention (CDC) indicate that about 1 in every 68 children are diagnosed with some level of autism spectrum disorder — or ASD. Though autism is found nearly five times more in boys, it occurs along all ethnic, racial, and socioeconomic lines.
The blanket term “autism” refers to not one, but a spectrum of disorders characterized by a strained ability to communicate with others, and the tendency to engage in repetitive and restrictive behaviors. At one end of the spectrum are individuals like Matthew who require constant care and supervision. However, the autism spectrum also includes others who are very high functioning. This understanding make a “one-size-fits-all” approach to research, treatment or even diagnosis outdated.
The newest approaches in the field focus on young children and using new technologies to analyze brain chemistry, behavior and treatment models.
“We are not treating autism spectrum disorders. We are treating the individual child who has the behaviors consistent with a diagnosis of autism spectrum disorder,” said Dr. Roberto Tuchman, director of the Autism and Neurodevelopment Program at Nicklaus Children’s Hospital. “In treating that, we are designing specific treatments for that particular child.”
As far as diagnosis, there is no blood test, EKG, or MRI that can confirm autism spectrum disorder . As a result, there is some conflict among professionals in the field as to whether the disorder is on the rise, or whether new technology and information have made it easier to identify symptoms.
“We define ASD and diagnose it purely by behaviors even though it is a neurological problem. I explain to parents what the behaviors are and we come to a diagnosis together in a way,” said Tuchman. “The use of the diagnosis for ASD is to get appropriate educational and behavioral interventions that will help address those behaviors.”
At the University of Miami’s Center for Autism and Related Disabilities, researchers like Lucina Q. Uddin, an assistant professor of psychology at UM, use functional magnetic resonance imaging (fMRI) to observe blood flow changes in the brains of autism spectrum disorder patients — including children as young as 7. Specialists who study autism don’t know how the brain of an autism spectrum disorder patient changes over time, or whether there are specific markers that can be used to project who will develop symptoms. Until now, researchers have had neither the ability nor the resources to gather this kind of information.
Uddin just won a grant from the National Institutes of Health to observe brain dynamics, using new advances in neuroimaging, computer science and electrical engineering. The theory holds that certain symptoms of autism spectrum disorder, like repetitive behaviors, can be explained by an underlying rigidity in the way the brain functions.
“We already have evidence that there are some brain systems that look different in young kids in terms of connectivity patterns that are increased or decreased in certain areas,” said Uddin. “This could help address some of the issues with diagnoses.”
Daniel Messinger, a UM professor of psychology and a researcher who studies autism, uses fMRI and face- and body-tracking technologies to study interaction between young patients and their environment. He is currently heading a study of infant children with older siblings diagnosed with autism spectrum disorder — a group that is 20 percent more likely to develop symptoms of the disorder.
“One-fifth of these kids will develop an ASD, and one-fifth of them will develop other challenges,” said Messinger. “We found that parental interaction helps children who will develop ASDs, and that goes above and beyond a diagnosis. The real important thing is how you improve a child’s developmental trajectory.’’
UM’s Center for Autism and Related Disabilities has about 9,000 members. The program was created in the 1980s by parents, teachers, and other members of the community who were looking for reliable information on autism spectrum disorder. Today, the center conducts studies, offers employment boot camps, makes referrals to therapists and physicians, and coordinates with charitable organizations for outreach events. A new initiative by the center will help teach parents entrepreneurial skills so that they can create profitable businesses around their children’s specific abilities.
“What I tell parents is that the reason we’re here is to help you sift through a lot of the noise,” said Michael Alessandri, executive director of UM’s Center for Autism and Related Disabilities and assistant chair of pyschology. “If you’re going to take advice from anyone, take advice from someone who isn’t trying to sell you something.”
So, what does this mean for Matthew?
“I think it’s only a matter of time before someone makes a breakthrough that will discover what factors cause autism in children and find a way to prevent and even restore their opportunity to lead successful lives,” said Gonzalez.
Matthew has learned sign language to help him communicate basic needs to his parents. New assistive communication apps on tablets and smartphones can be used to help non-verbal autism spectrum disorder children as well. As a result, he has become more receptive to therapy and schooling.
“We all just keep working in the hope that one day he’ll come ahead,” Gonzalez said. “That is a hard fight to keep, but we are never going to give that up.”