Mona Mardini, a UCLA graduate, knows first hand the challenges of treating autism.
Mardini works with children with autism, who can be temperamental and introverted, for as much as six hours a day. She hopes her work will help alleviate the severe social and language deficits that her students face.
Autism is a developmental disorder characterized by delayed language development, impairment in social behavior and restrictive behaviors.
“(Children with autism) are in their own world and they don’t want anyone to bother them,” said Mardini. “It’s hard. I envision (my work) as pulling them out of their world.”
The Lovaas Institute for Early Intervention, where Mardini works, uses early intensive behavioral intervention, one of the many treatments for autism.
Behavioral intervention programs help young children with autism improve very specific skills through intensive one-on-one therapy. According to James McCracken, a professor of child psychiatry and director of the Division of Child and Adolescent Psychiatry at the UCLA Neuropsychiatric Institute, these programs have been the subject of more scientific studies than any other treatment program and have also been shown to be effective.
Mardini and her colleagues try to keep children in the program for at least three years, with 40 hours of intervention each week, to give them the best chance of improving their symptoms.
The ultimate goal of intensive behavioral intervention is for children to talk and behave appropriately around others.
Students are taught object labeling, a process that encourages them to name objects such as cups or apples, along with other behavioral intervention programs at the Lovaas Institute.
“We have to teach them things that other kids get naturally,” said Mardini.
Though there is little or no evidence of their efficacy from large group studies, patients and families have engaged in other commonly practice treatment options, McCracken said.
These include following special diets that are gluten and casein-free, taking large amounts of certain vitamins, using anti-depressant or anti-psychotic medications, consuming a hormone called secretin and undergoing heavy metal chelation, the removal of mercury and other heavy metals from the body.
About half of all children with autism are taking some form of medication that affects the brain, according to recent studies. Prescriptions for children with autism include a wide range of prescription drugs, from anti-psychotic to anti-seizure drugs, and work to increase levels of specific neurotransmitters in the brain, McCracken said.
Even less is known about the effectiveness of the less conventional treatment options, such as the special diets and vitamin supplements.
“We don’t have any evidence that any of those extra things are making a difference, but there’s plenty of life stories that would suggest that. … I think we’ll know in a while whether or not those are effective added in, or on top of the other kinds of treatments,” said Dr. Connie Kasari, a professor in the UCLA Graduate School of Education who studies behavioral intervention programs.
“But some things we know are not effective, like secretin. Some of these unusual kinds of treatments don’t seem to be effective, but that hasn’t really slowed down families seeking them,” she added.
In many cases, significant placebo effects can make parents think a treatment is working even if it isn’t, according to McCracken. “That hope, that positive expectation, can lead parents and even researches to look for the best and emphasize, maybe overemphasize, what positive signs they see during the treatment trial,” he said.
In many cases, the desperation that parents feel is likely to push them to try unconventional treatments even if there is little or no chance that they are actually going to work, McCracken said.
“As a parent myself, I can see why someone would want to try almost anything that seemed like it might have a fair shot at improving their child’s situation,” he said.
According to Matthew Kabler, director of operations of the Autism Research Institute, non-traditional treatments such as heavy metal chelation and dietary or nutritional regimens can be used in conjunction with standard behavioral interventions and are the best course of action for helping kids.
He added that the biggest challenge is increasing the availability of other treatments to patients.
McCracken warns that there are downsides to pursuing some of these unproven treatments: “It may distract parents from pursuing more mainstream or better established treatments,” he said. “Some of the more fringe treatments, like chelation for example, or megavitamin supplementation, have some risk for actual medical harm.”
Kasari said that though early intensive behavioral intervention is currently the only rigorously supported treatment option, a number of ongoing studies, particularly about dietary options, should soon provide conclusions about whether other options are viable.