Early Intervention for Autism Spectrum Disorder
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By: Virginia Olson and Alex Strauss
According to the most recent data from the Centers for Disease Control and Prevention, one in 68 children is diagnosed with Autism Spectrum Disorder (ASD) – up from 150 in 2002. ASD is now the diagnostic category listed in the DSM-V to describe a group of developmental disorders encompassing a range of symptoms and levels of disability.
Characteristics of ASD include delays in the development of communication skills and vocabulary, problems in building relationships, and being socially withdrawn. Symptoms often appear at an early age. Babies and toddlers with autism spend less time looking at people, are less responsive when their names are called, and often fail to develop gestures such as pointing, which are important to set the stage for language. By the time they enter school, these tendencies can cause serious problems in learning and social interaction.
Experts now say that therapeutic intervention as early as possible may be the key to mitigating the effects of ASD and maximizing these children’s potential.
LifeScape, a long–time regional leader in providing services to people with disabilities and their families, is offering innovative and evidence-based new options for earlier ASD intervention. Depending on their unique situation, a child who has been diagnosed with ASD as early as 12 months of age can now receive multidisciplinary therapy through Early and Intensive Behavioral Intervention (EIBI) or through a new approach called the Early Start Denver Model (ESDM). Both models utilize principles of Applied Behavior Analysis (ABA).
Early and Intensive Behavioral Intervention
In their 2014 book, Comprehensive Guide to Autism, authors Lars Klintwall and Svein Eikeseth describe Early and Intensive Behavioral Intervention (EIBI) as “an evidence-based intervention which uses principles and procedures from Applied Behavior Analysis to teach adaptive behaviors to young children with ASD.”
Vicki Isler, Ed.D, BCBA-D, DIrector of Residential and Education Services at LifeScape, has decades of experience with ABA therapy. She says the tenets on which it is based are relatively simple and universally applicable. “Behavior that is reinforced will happen again. This goes for all of us, whether or not a person has autism.”
Although ABA can be used with any age group, as Klintwall and Eikeseth observe, the approach appears to be especially effective when applied early (ideally before age 5) and intensely (30 to 40 hours of therapy per week). A 2014 analysis of EIBI published in Research in Developmental Disabilities found that, among toddlers with autism who entered the therapy program before their second birthday, 90 percent made significant gains. While all children in the study gained from the therapy, the percentages gradually dropped the older a child was when they entered therapy.
“From the time the pediatrician can say there is a developmental delay, we can begin to work with them,” says Isler. Although the therapy has not been covered by insurance in South Dakota (which will be changing soon - see below), Isler has seen the impact of EIBI in her former state of Florida. “Many of these children, if you can get them into therapy early enough, can go into school without even showing symptoms of autism.”
Delivered under the direction of Board Certified Behavior Analysts (BCBAs), the EIBI approach consists of identifying which skills the young child lacks, breaking these skills into component parts, and then working on each of these components separately, repeating and rewarding as needed until the child has mastered each step in a sequence and can perform the task independently.
“For some reason, children with autism don’t learn by observation and imitation the way other children do. They have to be taught every little thing,” says Isler. “So we use these ABA principles to teach them to follow simple directions, including things they need to do to get ready for preschool such as sitting still, paying attention, and imitating. Then we work on numbers and colors. We teach this all in a very structured way.”
In the EIBI approach, the environment is carefully structured to so that the child is most likely to be successful at acquiring and maintaining new skills. Repeatedly practicing (and receiving reinforcement for) novel skills in a structured setting prior to using them in a natural setting, is one of the key pieces of an EIBI package. EIBI uses one-on-one discrete training for basic skills and may include less structured teaching for skills like self-care.
EIBI Soon to Be More Accessible
Despite significant research supporting the benefits of EIBI, and although South Dakota has long had BCBAs capable of providing it, the therapy has not been covered by insurance, making it completely inaccessible for many South Dakota families who might benefit. Unlike physical therapy that may be effectively delivered in weekly one-hour visits, EIBI can require up to 40 hours a week and cost as much as $40,000 a year. As a result, at LifeScape, ABA therapy has been largely restricted to the inpatient population where the school district helps foot the bill.
But thanks to the efforts of parents, therapists, and other advocates, South Dakota became the 39th state to mandate insurance coverage for therapy for ASD in 2015, with the provision that BCBAs must be licensed by the state, just as occupational therapists or physical therapists currently are. Isler worked on a committee to write the new rules for licensing BCBAs, who will be licensed under the state Board of Social Work. She anticipates that all of the state’s BCBAs will have the opportunity to become licensed by the end of the year and begin billing insurance companies for their services.
“For years, we have known that early, intensive intervention is what many of these children
needed,” says speech language pathologist Megan Wiessner, MA, CCC-SLP, part of LifeScape’s Autism Evaluation Team. “But without having the coverage from insurance, although we have recommended this to parents for years, most just couldn’t pay out of pocket for it.”
Under the new law, children with autism will be eligible to receive ABA services through the age of 18. It allows for up to $36,000 a year to cover ABA therapy for children ages 0 to six, $25,000 for children seven to 13, and $12,500 for those 14 to 18.
The Early Start Denver Model
An adaptation of the of the Denver Model preschool originally developed in the 1980s, ESDM utilizes a curriculum that includes ABA principles and addresses skills across all domains of development - fine and gross motor, communication, joint attention, activities of daily living, etc. - to provide a multidisciplinary approach for very young children and their families. The ESDM can be used in various delivery settings and utilizes a “naturalistic approach” to increase a child’s interest in activities and other people.
“ESDM is a naturalistic developmental behavioral intervention model that takes principles of ABA therapy as well as knowledge of children’s typical development and fuses them together into a curriculum and an approach that any discipline can use,” says Wiessner. “Instead of working one-to-one at a table with an adult, we work on goals within natural activities. It might be a game or an art project or a snack. We embed things like requesting, eye contact, imitation, or vocalization. It is a nice comprehensive option for these little kiddos.”
With ASD diagnosis now possible in younger patients, Wiessner says the goal is to teach these small children what they need to know to succeed by the time they start school. “It is now possible to help children as young as a year old and we have the tools to diagnose most children by the age of two,” says Wiessner. “Even a handful of years ago children often weren’t diagnosed until eight, nine or ten.” By that time, many were already experiencing problems in school.
Although the ESDM approach is new to the area, the research on this emerging therapy looks promising says Megan Johnke, OTD, OTR/L, Director of Therapy at LifeScape.
A randomized controlled trial of ESDM published in the journal Pediatrics in 2010 suggested that children who received ESDM therapy for 20 hours a week over two years showed more improvement in their cognitive and language skills, more adaptive behaviors, and fewer autism symptoms than a control group of children who received a variety of other community-based services. The research prompted Time Magazine to name ESDM to its list of top ten medical breakthroughs in 2012 and the approach is sanctioned by the American Academy of Pediatrics.
“LifeScape has been providing speech, occupational therapy and psychological services for a long time,” says Johnke. “ESDM is just more collaborative for a well-rounded approach.”
LifeScape has taken a lead role in helping its personnel become certified in this new approach to early ASD intervention. Wiessner, who will attend her advanced ESDM training in November, may be the first to receive this certification in South Dakota. Several other LifeScape therapists are currently training in the ESDM curriculum.
Intervention Starts with Evaluation
Regardless of which therapeutic path a child ultimately takes, Sioux Falls child and adolescent psychiatrist David Ermer, MD, part of LifeScape’s Autism Evaluation Team, says the first step is professional evaluation. Erner recommends that any child exhibiting early signs of ASD be referred to the autism team for testing, especially if parents have concerns.
“There is no harm in making the referral,” says Dr. Ermer. “The harmful thing could be waiting too long because early intervention is so important. The earlier you intervene and start getting help for the child, the better things are likely to go in the school setting, at home, in social settings, and later on.”
Dr. Ermer says he has seen for himself the positive impact that early behavioral intervention can make.
“I have seen some tremendous differences in children who have gotten help from someone who is highly trained and follows the established guidelines,” he says. “In some cases, I have been able to either stop prescribed medicines or not have to prescribe them at all because things have improved so much. When in doubt, refer on.”
“The thing I love about this is that severe behavior is fixable,” adds Isler. “if a child comes in on a ventilator, I can’t do anything about that. But if they come in hitting, kicking, biting and throwing things, I can fix that. You can make a real impact with early intervention.”