A recent family trip to Walt Disney World reminds Sheryl Daake of McKinney how far her son Robbie has come. When he was 15 months old, Daake knew something was wrong. Robbie had been talking up to that point but dramatically began to lose his speech. Quick to intervene, Sheryl and her husband Rob, who are both engineers, enrolled Robbie in Early Childhood Intervention (ECI) for an expected speech delay. But instead of improving, Robbie’s condition worsened.
At the age of 3, the family pushed their pediatrician to evaluate further and Robbie was diagnosed with autism and hypotonia. “We felt devastated, depressed and alone,” the mom of two remembers. “But we were also very driven to get our son to the right specialist and interventions.”
On a mission to find the best care for their son, both parents took a leave of absence from their jobs and dove headfirst into research. “ABA was the therapy that came up as effective again and again in our findings, so we wanted to start as soon as possible,” Daake says.
Though not a cure for autism, ABA, or Applied Behavior Analysis, is the most accepted treatment for young children diagnosed with autism. Backed by 30 years of scientific research, it is designed to coach life skills and improve communication in young children. It’s often the only autism therapy covered by health insurance.
Still, parents of children with autism often have mixed feelings — and plenty of questions — when it comes to ABA.
Archana Dhurka of Plano, mom to a 15-year-old son with autism, agrees with the duality in perceptions about ABA therapy. “For some, ABA is the holy grail of treatment,” offers Dhurka, who herself became certified to administer ABA. “For others, it is an unsettling practice. Parents either hate it or love it. But, if parents are involved in the program and make sure that the skills are generalized, it is a therapy that has been proven to work.”
The building blocks of ABA
Scientific jargon can make understanding the basics of ABA difficult, but, put simply, it’s a form of therapy centered on the idea that people of all abilities are more likely to repeat a behavior when they are rewarded for that behavior.
“ABA uses techniques like positive reinforcement to shape new behaviors,” explains Susan Nichols, Ph.D., director of intervention at the University of North Texas Kristin Farmer Autism Center. “Anything we can observe, we can change. This is what makes ABA different from most other therapies and why we call it evidence-based.”
In ABA treatment, the therapist presents the child with a stimulus designed to provoke a specific response. When the child responds with a correct behavior, he is rewarded with verbal praise, the use of a favorite toy, a small food treat or another reward that has been chosen to specifically motivate that child.
The principles of ABA were founded by O. Ivar Lovaas, Ph.D., in the 1960s. But it wasn’t until 1987 that Lovaas discovered the techniques could work for children with autism. Although groundbreaking, Lovaas’ research was met with suspicion, particularly for methods that included negative reinforcements, such as loud noises, slapping and electric shocks. These adverse methods were completely abandoned in the 1990s but are still a source of confusion for many parents.
ABA in real life
All ABA programs begin with a Board Certified Behavioral Analyst (BCBA), who will spend several sessions assessing the abilities and needs of the child before setting goals. This is also a time for the therapist to build rapport with the child.
“Most people see an ABA experience as a teacher drilling a child one-on-one, but it really looks like playing on the floor, following a child’s lead and using naturalistic techniques to meet a child’s goals,” Nichols says.
The BCBA ascertains what kind of reinforcers will be most effective with each child. “A good reinforcer has to make a change in behavior,” Nichols says. “Just delivering chocolate chips or Skittles isn’t enough if we don’t see a change in behaviors."
Once reinforcers are chosen and needs are assessed, the BCBA will write an individualized program for the child that includes goals and steps to meet those goals. “If I were working with a child to increase communication, I might choose a favorite puzzle for us to complete together but leave out one piece to encourage him to ask for it,” Nichols explains. “At first I might reinforce him for just looking at me but next time expect him to make some sound while working up to a word.”
Parents will be able to see the work that the child and therapist are doing during sessions, but there is an equally important job going on behind the scenes: data collection. “With every session, I am observing the behavior and documenting the effectiveness of what I am doing to systematically choose new goals and targets,” reports Nichols.
This constant re-evaluation helps behavioral analysts like Nichols adapt the program as needed. “When the data’s not going the way you want, something has to change,” she asserts. “That’s one of the best things about ABA. It’s not that the child can’t learn, it’s that I need to change the program so they can succeed.”
Nichols advises that ABA is most effective if it is started before the age of 4 and if it is scheduled for more than 20 hours per week, although ABA can be effective for any age and ability. “ABA can absolutely work for every individual,” she says. “It’s used by businesses to help employees meet goals and can be used for any child with any diagnosis.”
A valuable tool in the toolbox
After Sheryl and Rob Daake discovered ABA, they started their son Robbie on an intensive program of 35 hours of ABA therapy each week at home. Daake, who had thoroughly examined the process of ABA, was excited to see that the reality of ABA therapy did not exactly match the expectations from her research.
“The methods the BCBA used were not as strict and robotic as we expected based on our readings,” she recalls. “Our BCBA and team of therapists used an eclectic approach of naturalistic and play-based teachings that catered to Robbie.”
The methods used by Robbie’s ABA team worked fast. In just the first few sessions, Robbie began making eye contact, a skill he had lacked prior to ABA. Robbie’s therapist learned that the boy loved to swing, so his earliest lessons happened on the backyard swing set. After swinging for a few minutes, the therapist would stop the swing and only start again when Robbie made eye contact.
“It didn’t take him long to learn that if he wanted to swing, he had to look at us,” his mom remembers. In the same way, the therapists helped Robbie begin making one-syllable requests and vocal approximations.
After more than a year of stalled progress with ECI, the Daakes knew they were on the right track. Today, after more than six years of ABA, Robbie continues to make progress, although it is not always as easy as it was in the beginning.
“Progress can be slow,” Daake admits. “It’s often two steps forward, one step back. [But] we can look at the data and see that Robbie has gained over 100 expressive words, he has learned all of his numbers and letters and more. There is always progress.”
Those tangible gains that are written into Robbie’s program are worth celebrating, but the side benefits, like the family trip to Walt Disney World, give the Daakes real hope. “When he was diagnosed, we thought normal things like going to Disney weren’t possible, but ABA has made them possible,” Daake asserts.
The Dhurka family, including mom Archana who is a BCBA at a home-based freelance clinic in Plano called All Behaviors Considered, experienced similar feelings of salvation.
One morning, the Dhurkas awoke to find their 9-year-old son Ankush, who has autism, missing from their home. Frantically, Archana searched inside and outside the home, calling 911 when he wasn’t located. One long hour later, Ankush was discovered across a busy intersection at a gas station where he wandered to get a bag of Cheetos. “Needless to say, we were devastated.” Dhurka remembers.
Knowing that his safety was at risk, the Dhurkas, who were already using extensive ABA therapy, were able to add an additional element to his program to eliminate the dangerous behavior. Several trials were put in place by Ankush’s therapist, giving him the opportunity to leave the home but using ABA techniques to teach him safe boundaries. With these techniques, Ankush was able to learn a valuable life skill that kept him protected.
The other side of ABA
For families like the Daakes and the Dhurkas, ABA is sort of a godsend. But there are others who haven’t found the same success.
“ABA therapy either works … or it doesn’t,” offers Jeff Belloni, who learned the ins and outs of ABA when his now 11-year-old daughter was diagnosed with autism at 18 months old.
The Bellonis began to notice a drastic change in their daughter Sophie at the age of 13 months. She had been a happy, engaged baby but slowly began to lose ground until she was completely nonverbal and disconnected. Belloni says that when his wife Stacie, a flight attendant, would return home from work, Sophie would not recognize her.
“It was a very dark time,” the Lewisville dad remembers. “We even stopped taking pictures because we didn’t want to remember her that way.”
After Sophie was formally diagnosed, the Bellonis began an intensive program of ABA. For hours each day, Sophie attended therapy along with Jeff, who would hold his young daughter in his lap throughout treatment. Although the Bellonis were interested in pursuing alternative therapies in the biomedical field, their insurance company only covered ABA.
“ABA is the default therapy for autism because it is one of the only things the insurance companies will pay for. But autism is so complex that you can’t say that one therapy will work for all kids,” Belloni says.
After three years of therapy, the Bellonis did not feel that they were achieving their goals. Sophie was miserable in therapy and began to see the process as work rather than the play she desired. “It’s frustrating to watch your kid fail,” Belloni confesses. “It’s soul crushing. I didn’t want to see that any more than I had to. She can’t talk, she can’t use the bathroom … I don’t see the value.”
Ultimately, they discontinued the program in favor of an alternative form of therapy developed by the Autism Treatment Center of America known as the Son-Rise Program, a popular option for families who don’t connect with the ABA model — though it doesn’t have the same scientific backing.
Instead of seeking to eliminate or gain behaviors through repetition, Son-Rise emphasizes social connections with the child and uses those connections to increase communication, eye contact and emotional connectedness. “I’m not anti-ABA,” Belloni says. “I think that ABA can work and can be one of the tools you can use. It just didn’t work for us.”
Moving past misconceptions
When it comes to choosing therapy, parents are constantly bombarded with conflicting advice from a variety of sources. To eliminate confusion, caregivers can take a page from the ABA playbook and analyze the data. The National Standards Report conducted by the National Autism Center (can be viewed at nationalautismcenter.org/nsp) provides families with the most comprehensive research on therapies and their effectiveness, including the value of ABA.
But even with research and data to back ABA, Nichols urges parents to ask questions and remain vigilant to ensure that ABA is working correctly for their child. “I see the misapplication of behavioral principles all the time,” she says. “ABA can be delivered by parents, therapists, even peers. But it has to be overseen by an ABA therapist to be applied correctly. I think people sometimes think they are using ABA, but it’s not being overseen by a qualified professional.”
Nichols also encourages parents to be patient as they work through an ABA program with their child. “People want quick fixes and cures,” she says. “We have to remind ourselves that we don’t yet have a cure and we need to focus on treatments that are proven but might take a little longer.”
Daake knows this struggle with patience all too well. “I would encourage all parents to at least give ABA a chance,” she says. “Bottom line: We started with a child who couldn’t speak, wouldn’t make eye contact and couldn’t interact with his peers. Now, he can do all of those things.”