Autism: Making the Case for Early Diagnosis and Action

Scott Center Leads the Way for Prevention, Treatment
Through Applied Behavior Analysis

When Henry McGill began treatment for autism spectrum disorder at The Scott Center for Autism Treatment at Florida Institute of Technology a few months shy of his second birthday, he was not speaking or turning his head when his name was called. His mother Kate said he could use the sign for ‘more’ but that Henry threw frequent tantrums because he couldn’t communicate effectively.

Transitions from one activity to another were also very difficult, often sparking long bouts of crying and throwing himself on the floor.

That was a year ago.

Now at 36 months old, Henry tells stories and sings songs and invites others to play with him. And, Kate McGill said, “he responds to his name and runs out to greet us when we pick him up, shouting ‘mom’ or ‘dad.’”

Henry’s progress provides evidence that a therapy called applied behavior analysis, or ABA, can reverse elements of autism when provided to toddlers who are under 24 months old.

“Henry is the poster child for early intervention,” McGill said.

Knowing the Signs

Autism spectrum disorder, or ASD, is one of the most common neurodevelopmental ailments, affecting one in 68 children in some form, from mild to more severe. Though the causes of ASD remain largely unknown, the Scott Center and its use of applied behavior analysis has become a leader in effective early intervention even as its faculty continue to research why it seems to work so well.

ABA is based on decades of research about how humans learn. Psychologists apply its key principles in a precise way to encourage positive behaviors and new skills. One simple example: when a behavior is followed by a reward, the behavior is more likely to be repeated.

Ivy Chong, a psychologist, board-certified behavior analyst and the Scott Center’s director of autism services, said that when social emotional delays or warning signs of ASD in children as young as 1-year-old are treated with ABA, the child is much more likely to be on par with his or her peers by kindergarten.

“Research shows early detection and extremely early intervention in infants and toddlers is effective, but more study needs to be done,” she said. “We’re working to show that screenings and access to immediate treatment for infants and younger toddlers have enduring benefits and possibly mitigate the diagnosis.”

With funding from The Caplan Foundation for Early Childhood, Chong is investigating the idea of a caregiver checklist to help spot warning signs of autism in infants and toddlers that could get them to treatment at the time ABA has shown to be the most effective. To assess the checklist, she is leading a study looking at at-risk infants who were born prematurely or who have older siblings with already diagnosed autism. Infants who have older siblings with autism are more likely to have ASD.

Chong’s study focuses on these at-risk infants because parents with subsequent children may be more likely to recognize red flags in their second child and assist researchers in identifying behaviors that indicate autism at a younger age than parents raising a child for the first time.

Parents in the study are asked to watch for missed milestones at various ages and report them to Chong. The children are also brought to the Scott Center for testing, and parents receive training to provide ABA in the home if any indicators, such as lack of eye contact and response to name, are absent.

“The American Academy of Pediatrics says to screen children at 18 months but we also know you can identify spectrum disorders earlier. We want to identify those early warning signs in infants and teach skills before symptoms become something full-fledged,” Chong said. “Parents often see the signs but are dismissed and given a ‘wait-and-see approach’. The diagnosis can be stigmatizing, expensive and difficult to deal with because it’s crisis management by that point.

“I want this research to help provide preventative measures for families,” Chong continued. “I want to know if a parent can complete a checklist without a medical professional being the source of information. Armed with that caregiver-provided evidence, we can identify skills for parents to work on before it turns into a formal diagnosis.”

With Chong’s guidance, Kate McGill learned ABA practices for using at home, such as not responding to Henry’s requests until he makes eye contact, announcing transitions to different activities to help reduce anxiety and consistently praising good behavior.

McGill signed up her second baby, Patrick, for Chong’s sibling study after Henry had shown so much progress from the early intervention ABA treatment.

Early Screening

The current protocol for making a formal diagnosis of autism spectrum disorder is between 24 to 48 months of age. Caregivers who observe signs of delays in their infants are often told by medical and community-based providers to wait before they are referred for formal evaluation, which leads to over half of all children with autism being diagnosed at age 4 or later.

Chong believes that is too late for gaining the best results from ABA treatment.

Because research into early intervention with ABA is so promising, one of the Scott Center’s missions is to promote screening for autism before the age of 2, said Michael Kelley, the center’s executive director and a professor in the behavior analysis program at Florida Tech’s College of Psychology and Liberal Arts.

While ABA can be used with autistic children of all ages, research from the New England Center for Children has shown that the most dramatic progress can be seen in toddlers between 18 and 24 months, the age when autism symptoms first surface.

“Many children are not getting screened at an early enough age for autism spectrum disorder and therefore may miss a crucial time for treatment,” Kelley said.

To that end, the Scott Center is launching Screen Our Kids, a telehealth-based initiative that will give caregivers access to the same screening tools used by pediatricians to determine if their child could be at risk for a developmental delay before the age of 2.

Early signs are tricky to spot, Chong said, because the earliest signs of autism involve the absence of normal behaviors—not the presence of abnormal ones.

Some early red flags include:

• Baby isn’t making frequent eye contact at 2 or 3 months.
• No smiling by 3 months.
• Not laughing at 6 months.
• Not following a caregiver’s gaze at 8 months.
• No babbling at 9 months.
• Not turning when name is called, not waving goodbye or making hand gestures like pointing by 12 months.
• Not saying a single word by 14 months.
• Not playing pretend by 18 months.

When it comes to healthy development, there’s a wide range of normal, Chong emphasized, but caregivers shouldn’t take a wait-and-see approach if they feel in their gut something is wrong.

“Parents would not wait if their child was in physical pain, and this situation can be just as urgent,” she said. “You risk losing valuable time at an age where your child has the best chance for improvement.”

Early Intervention

Once autism spectrum disorder symptoms are recognized, ABA treatment can begin immediately, and Kelley said the payoff for early intervention can be dramatic.

“If we can get to autistic children before elementary school, 50 percent will be indistinguishable from their peers by the time they enter school, and most of the remaining 50 percent will also show significant improvement,” he said. “Without early intervention, only 2 percent will show such improvements.”

Suzanne Dickey got involved with the Scott Center when she reached out to get help for her firstborn son, Benjamin. A friend had a child with autism and noticed how similar Benjamin was to her child as a toddler.

By the time Benjamin was 18 months old, he had missed some of the usual developmental milestones. “His only word then was ‘go,’” Dickey said, “and even then it sounded more like, ‘doh.’” There were other signs, too, such as a lack of eye contact and little interest in playing with toys. By 2, Benjamin had been screened and diagnosed with moderate to severe autism.

Now 3, Benjamin’s mother says ABA treatment has helped him make eye contact and has improved his communication. When Dickey had her next child, David, she said she was more aware of telltale signs of autism because of her experience with Benjamin.

And McGill, who enrolled her second and third children in Chong’s infant study, was also proactive in watching for early signs of autism.

“Our son Patrick has been in the study since shortly after his birth,” McGill said. “He is now nearly 18 months and is about to complete his final evaluation.

Michael, our third son, will be joining the study as well. Our goal is to keep a watchful eye on each of our children so that any issues that arise may be dealt with swiftly and promptly.”

–Shelley Preston