Collaborative Care: How a Superior Treatment Model Helps Children with Autism Get a Better Quality of Life
Overcoming Challenging Behavior
Jane’s parents and pediatrician were concerned that the little girl had issues with food and eating, weight management, and dental and self-care. She insisted on eating the same half dozen or so foods, and it took her hours to consume those foods. Meal-times often resulted in tantrums and self-harming behavior. It was a struggle for her to gain weight and keep it on. At age 6, Jane weighed 30 pounds. Her pediatrician diagnosed her as having a failure to thrive—a condition that occurs when a child’s weight or rate of weight gain is significantly below that of other children of similar age and sex.[i]
Without intervention, Jane would have likely been in line for medical intervention (such as a feeding tube).
Alternative Behavior Strategies (ABS), where Jane was being treated, was able to coordinate a team of individuals to find the foods necessary to integrate into her diet to help her gain weight. The ABA therapy plan was focused on developing new skills surrounding eating. ABS brought together the pediatrician, nutritionist, psychologist, speech therapist, occupational therapist, family and behavior intervention team to provide life changing collaborative care.
What was Jane’s outcome on the ABS collaborative care and ABA therapy program? Read on to find out.
Collaborative Care, Better Results
Autism Spectrum Disorder (ASD) is a complex developmental disability that requires therapeutic intervention, which can include both behavioral and medical treatment, to reduce the effects of ASD and help the child thrive. Intervention generally enables children to be more self-sufficient, requiring fewer services as they age because they become more independent.
Every child with ASD has his or her individual challenge(s) and needs a specialized treatment program. One particularly successful treatment program centers on collaborative care. The benefits of taking a collaborative care approach in conjunction with Applied Behavior Analysis (ABA) therapy are countless, as all team members bring their own specialized knowledge and skills to bear on the child’s behalf to help him or her reach full capacity.
Says Paul S. Carbone, MD, Associate Professor of Pediatrics, University of Utah, Department of Pediatrics, “In my work with children with ASD and addressing challenging behavior, I frequently have the opportunity of meeting with families and their behavioral team in joint visits. These collaborative visits during which behavioral data is shared and family perspectives are obtained, are the key to ensuring the success of a treatment plan. Based on my experience, interdisciplinary care is not only ideal, but necessary in order for children with ASD to reach their potential.”
The overarching goal of collaborative care is to close the gap between the child’s level of functioning and that of peers who are developing more normally. Collaborative care blends the expertise of a united team of professionals that implements a dynamic care plan designed to help each child meet his or her full potential. This team-based approach provides a comprehensive treatment for the benefit of the child and that ensures the child’s individual needs are met.
ABA therapy is the most frequently recommended—and clinically proven—treatment to help children with autism. In fact, the U.S. Surgeon General has recognized ABA as a superior form of treatment.[ii] It is a data-driven therapy that uses systematic, evidence-based assessments to measure outcomes in real-time measurement of behavior in order to guide intervention decisions and make any necessary adjustments on the basis of solid data. ABA has been proven to improve functioning across all skill areas by using techniques proven to increase the child’s motivation and improve skills such as speech, cooperation, making friends, motor skills, hygiene, self-care and more. The treatment is individualized for each child. It is delivered in the home and community, with support and involvement from the families in every aspect of the program.
Additionally, ABA is the only treatment for ASD that has been designated as medically necessary. As such, it is increasingly covered by health insurance providers, helping to make it an accessible treatment option for many families.
Most children with ASD generally need care from multiple caregivers. At ABS, for example, behavioral analysts are key, permanent members of the team. They help guide the family/caregivers through all facets of care, from the diagnosis through treatment. They coordinate all the doctors, schools, therapists and family members to ensure everyone is aware of everything that is happening with the child’s ABA therapy. Other internal team members can include behavioral interventionists, who work with the family to integrate the ABA program in the home; psychologists, who make specific behavioral goals relevant to ABA treatment planning and grounded in medical necessity diagnosis; and various specialized therapists, including occupational therapists who help children with ASD who have trouble with motor development, independence skills and sensory processing; and speech therapists who treat the speech, language, cognitive communication, voice and stuttering problems that can affect many children with ASD.
Since a diagnosis of ASD actually affects the entire family, not just the child, the entire family is an important part of the collaborative team. To that end, a critical component of collaborative care is for family members to be trained to manage problem behavior to help them reinforce the treatment at home. Because the family is taking an active role in the child’s treatment program, results can be more consistent.
External team members can include the child’s pediatrician, who stay up-to-date on the child’s response to ABA treatment, and schools/educators, which can help children with targeted educational programming, including behavioral support or intensive treatment within the school setting.
“The opportunity to collaborate with my patient’s primary care provider allows us to make progress related to concerns over her ability to thrive that would have otherwise not been possible for us to see,” says Nicole Murphy, board certified behavior analyst (BCBA). “We were able to coordinate on areas of her nutrition that as a BCBA are out of my scope of practice, for example, the recommended number of calories per day, types of food we should focus on, appropriate weight gain and goals related to where a healthy weight for her age and height. As a BCBA I was able to take this data and create measurable objective goals. We were able to track monthly progress on the goals above and review progress bi-monthly.”
As an example of how a collaborative team assembly might look, here’s the composition of Jane’s team, both internal and external:
- Psychologist—who made Jane’s diagnosis and recommended a treatment plan.
- Pediatrician—who followed Jane’s progress and stayed up-to-date on her response to ABA treatment.
- Behavioral analyst—whose role was to guide the family/caregivers, supervise treatments, and coordinate all internal and external team members to ensure that everyone is on the same page with regard to Jane’s treatment plan.
- Behavioral interventionists—who help the family implement the ABA treatment in their home.
- Occupational therapist—to help desensitize Jane to eating issues and food texture concerns.
- Speech therapist—to help Jane develop normal, effective eating/feeding patterns and behaviors and to increase the repertoire of foods that Jane would eat.[iii]
- Nutritionist—to help guide the objectives and food selections for Jane.
A collaborative care program assures that everyone is working toward the same goals outlined in the customized ABA program to help the child meet his or her full potential. Collaborative care assures that families feel supported in caring for their child. This model of care provides the best opportunity to empower the child to become more independent as he or she grows and accomplishes his or her goals. As the child becomes increasingly independent, services and support are adjusted and reduced over time.
From Diagnosis to Treatment, Collaboration is the Key to Success
At the end of seven months of treatment, Jane showed real improvement. She had increased her daily caloric intake from 100 to nearly 800 calories and increased her food repertoire from seven identified foods to more than 30. As a result, she had an overall weight gain of 33 percent. In addition, meal times were reduced from more than two hours to a more normal approximate 10 minutes. Jane’s problem behaviors were also reduced, including an increase in functional communication resulting in fewer tantrums. She also had improvement in cognitive measures, demonstrating an increase of listener responding skills.
The benefits of a coordinated approach to care are numerous. As this example illustrates, collaboration between each member of the team, who brings their specialized skills and knowledge to bear on Jane’s behalf, results in an effective treatment. With the right interventions, children with autism can improve their behaviors, see a significant reduction in the severity of symptoms and can lead full, satisfying lives.
Johns Hopkins Medicine. Health Library. “Failure to Thrive.” (https://www.hopkinsmedicine.org/healthlibrary/conditions/pediatrics/failure_to_thrive_90,P02297)
NCBI. Association for Behavior Analysis International. PubMed Central.gov (PMC). “The Case for Licensure of Applied Behavior Analysts.” Michael F. Dorsey, Ph.D., BCBA, et al. Spring 2009. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2854065/)
CHOC Children’s organization. “Frequently Asked Questions About Feeding Therapy.” (https://www.choc.org/programs-services/rehabilitation/frequently-asked-questions-feeding-therapy/)