The Center for Autism and Related Disorders (CARD) was established in 1990. Today, the organization incorporates 26 treatment facilities around the globe that employ some 1,500 individuals for the study and treatment of autism spectrum disorder (ASD). Although initially founded to rehabilitate children, CARD is now expanding to meet the needs of all individuals with ASD. Its goal is to treat patients using the principles of applied behavior analysis (ABA).
“The treatment has the most scientific support,” says Dr. Dennis Dixon, an affiliate professor at the Chicago School of Professional Psychology and the current director of analytics at CARD. “There is over 30 years of research showing that it’s effective for treating autism. Not for every kid, and it’s not necessarily what you would call a cure, but every child does improve from it to some extent.” In rare instances, ABA was so effective that the treated individuals no longer met the behavioral criteria for ASD and had their diagnoses removed.
ASD is a group of complex brain developmental disorders that are characterized by communication deficits, difficulties in social interaction, and behavioral challenges of varying degrees — hence, the spectrum in autism spectrum disorder. “The language skills are not very well developed,” explains Dixon. “And then you have the focus on repetitive, purposeful behaviors,” which in turn give rise to a host of other problems, such as “the inability to find a lot of the social interactions reinforcing.”
The issue of ASD causation is perhaps the most challenging. “The brain is central to everything as far as human behavior goes,” he continues. “There’s a lot of good research that’s been done showing that some connections may not have been formed properly or at all. For instance, interhemispheric connections may be part of what ends up resulting in what we call autism,” notes Dixon. “The major pathways that connect the frontal lobe to the occipital lobe may not be formed as well as they typically are in children and adults.” ABA therapy essentially attempts to force the brain to form those connections.
Because developmental disorders are often diagnosed between the ages of 2 and 13, some of the currently emerging research is focusing on finding ways to screen for them earlier. Certain radars are rather effective at identifying which children may eventually go on to develop ASD. Reviewing early home videos, for instance, can provide clues about the eventual onset of autism. Telltale symptoms tend to be present very early on — the challenge is catching them as soon as possible. “At this time, the diagnosis only gets really stable between the ages of 3 and 4,” says Dixon. “I think we will see some genetic tests emerge in the next several years.”
A lot of the information children retain about themselves and how they should be interacting with others solidifies by the age of 7. This leaves very little time for early intervention. Autistic adults, therefore, tend to have a much harder time learning the skills and knowledge taught to them via ABA programs. “We have a relatively short window there to do the most amount of good,” elaborates Dixon. “That doesn’t mean that children after 7 don’t benefit. I see that clinically all of the time. Every child, even adults, can play games and learn things. But the strongest response tends to come early on.”
The benefits of early intervention are rather vast. When it comes to ABA programs, the aim is to treat the child as a whole, not just look at one particular thing. “Any skill deficits that the child is showing can be taught to them,” asserts Dixon. “It’s really not a cookie-cutter approach; we do an assessment that is really intensive.” It helps the team identify which skills the child is lacking, which are then targeted one by one.
Typically, two different approaches are used during this process: discrete trial training (DTT) and natural environment training (NET). DTT usually takes place one on one. A child might be placed in a school or home setting with a therapist leading the training. “This may include learning objects, mastering words, identifying various colors, teaching the child how to use language in a particular context or how to make eye contact,” Dixon clarifies. It’s about tailoring the treatment to the particular needs of the child.
The process, however, can take up to several years. Another drawback is that in this particular instance the therapist instigates all the learning, leaving emotional understanding, and perspective-taking out of the equation. NET addresses this problem by providing a more natural learning environment and a playful angle to the therapy.
One of the problems with autism is that personal eccentricity can sometimes be misconstrued as the disorder. While an individual with severe autism might behave in ways typically associated with ASD, those with very mild autism symptoms can go undiagnosed since their behavior might be chalked up to individual personality quirks. “Because the disorder is a spectrum disorder, it’s not always obvious when you see it. Now, clinicians who have been practicing for a long time in the field, they start to pick on the more nuanced manifestations of it,” notes Dixon. “Whereas on a train, if someone is exhibiting a challenging behavior in the moment, they may just seem eccentric.”
Implementing comprehensive ABA treatment programs that include both DTT and NET interventions have been proved to effectively rectify or significantly reduce maladaptive behaviors. The skill-building components of the treatments provide individuals with useful tools that allow them to get on well in society. While not every person with ASD will be cured, he or she might still receive positive, life-changing know-how that will drastically improve overall quality of life.
Because there are so many things that contribute to autism spectrum disorder, Dixon believes that the biggest obstacle facing the scientific community is subclassifying it. “There are a lot of great databases out there that are genetic or biological in nature,” he says. “What has not been developed is a really detailed database that describes the actual behavioral presentation in these children over time. So that’s what we’re doing — we are in the process of developing an online treatment planning and tracking tool.” This will create “clusters” of information that can lead to highly “tailored treatments” on an individual level.
“We’ve developed a database that has thousands of kids in it now, which we can look at on a longitudinal level. My hope is that we, along with the very smart statisticians we’re collaborating with, will be able to start to find these underlying phenotypes. If we do that properly, it will have a very strong impact on how they do [in the] long term,” he concludes enthusiastically.