|An Integrated and Multidisciplinary Approach to the Assessment and Treatment of Angelman Syndrome
|Monday, May 30, 2022
|3:00 PM–4:50 PM
|Meeting Level 2; Room 251
|Area: DDA/CBM; Domain: Service Delivery
|Chair: Patrick R Progar (Brett DiNovi & Associates)
|Discussant: Kelly David (Foundation for Angelman Syndrome)
|CE Instructor: Patrick R Progar, Ph.D.
The purpose of this symposium was to report on an integrated and multidisciplinary approach including prominent parent involvement to reduce several challenging behaviors, such as biting others, bruxism, and covering ears with hands in a 3-year-old girl diagnosed with Angelman Syndrome but to also collaborate with other professionals and her parents in skill acquisition goals such as puzzle building, correct use of her communication device, and feeding herself. An FBA was conducted which showed that some behaviors were socially maintained whereas other behaviors were maintained by automatic reinforcement. All target behaviors were reduced substantially, and a number of skill acquisition behaviors increased dramatically. For example, Charlie has begun to independently feed herself with a fork and has demonstrated success in toilet training. The results suggest that working collaboratively with allied disciplines such as speech therapy, feeding therapy and occupational therapy as well as fully integrating parents in the process is likely to produce optimal outcomes for individuals with Angelman Syndrome.
|Instruction Level: Intermediate
|Learning Objectives: At the conclusion of the presentation, participants will be able to: (1) describe the core features of Angelman's Syndrome and distinguish it from autism spectrum disorder; (2) describe when an augmentative communication device is preferred over other communication options; (3) list several strategies to increase collaboration efforts across multiple disciplines.
|A Speech and Language Pathology Approach to the Assessment and Treatment of Angelman Syndrome
|KRISTY DAVIES (Speech Language Associates)
|Abstract: A core deficit of Angelman's Syndrome involves delays or lack of meaningful speech production. Thus, alternatives to verbalizations are a priority from a speech and language pathology perspective. Providing communication to CC was the utmost priority for the team. Hence, the Speech and Language Pathologist with extensive Augmentative Alternative Communication (AAC) training immediately began a longitudinal investigation to find the most appropriate means of AAC for Charlie. An ongoing evaluation encompassed Charlie’s speech language sessions for nearly a year. Allowing the “not settling” approach and not accepting the “one size fits all,” Charlie’s AAC journey included unaided and aided approaches, and low tech, mid tech and high-tech options before accepting what approach worked best for her at that time and allowing future growth. The conclusion of the AAC evaluation process granted her access to symbolic communication, which she did not have prior to this process. With symbolic communication now in her life, she is able to comment, label people in her life, request desired items and direct actions. She is learning how to request cessation, assistance and recurrence. With the continued natural therapeutic approach, she will continue to learn more language functions and will feel pragmatically fulfilled in her life.
A Feeding Therapy Approach to the Assessment and Treatment of Angelman Syndrome
|Brie Teal (Speech Language Associates)
Feeding and swallowing difficulties are a frequent concern for individuals with Angelman Syndrome. Uncoordinated oral motor function and an insatiable appetite may significantly increase the risk of choking during meals as well as increase the level of support required from others. In order to improve safety and increase Charlie's independence, the Speech and Language Pathologist trained in feeding and swallowing was brought in to evaluate her skills in order to establish a baseline and an appropriate plan of care. A variety of methods were implemented including compensatory strategies, behavioral management techniques and parent training. Charlie’s progress was tracked over a year and results were positive. As a result of an “all hands on deck” collaborative approach between therapies, caregivers and family, Charlie has made steady progress toward her goals. Her overall strength and coordination during feeding improved, resulting in “less mess” and her negative feeding behaviors have been reduced. As therapy progresses, Charlie will continue to acquire new skills that will increase her level of independence making mealtime a less stressful and more enjoyable activity.
|An Applied Behavior Analytic Approach to the Assessment and Treatment of Angelman Syndrome
|GINAMARIE MASCO (Brett DiNovi & Associates), Gabrielle Cooper (Brett DiNovi & Associates), Alyssa Kinkade (Brett DiNovi & Associates), Morgan White (Brett DiNovi & Associates), Heidi Light- Giglio (Brett DiNovi & Associates), Patrick R Progar (Brett DiNovi & Associates)
|Abstract: The purpose of the present study was to conduct a functional assessment and develop behavior reduction and skill acquisition goals in a 2-year-old female diagnosed with Angelman Syndrome. Angelman Syndrome is a rare neurogenetic disorder characterized by balance issues, motor impairment and most individuals do not speak. A number of target behaviors were identified following a functional behavior assessment, including behaviors such as biting others, covering ears with her hands, and bruxism. Numerous skill acquisition behaviors were targeted as well, including teaching the participant to use an augmentative communication device. The results have been overwhelmingly positive, with most target behaviors at or near zero while her use of the communication device continues to improve over the past several months. The positive results are likely due to a strong collaborative relationship with other providers (e.g., speech, occupational therapy, feeding therapy) and her parents. The results are discussed in terms of applied behavior analysis focusing on the core features of Angelman’s syndrome.
|Angelman Syndrome: A Parent's Journey
|JENNIFER CUTLER (Parent), Matthew Cutler (Parent)
|Abstract: We learned about our daughter Charlie’s diagnosis of Angelman syndrome before her second birthday. We had known she was delayed, but never imagined such a rare diagnosis for our healthy baby girl. Once we found out our daughter had Angelman syndrome, we started reaching out to other parents who have children with Angelman syndrome (via Facebook) to learn from their experiences. The most consistent answer was “more therapies when they were young.” So, I researched all the therapies available, and ABA came up. She is thriving because of our incredible team and the fact that they work together towards common goals. Speech, Occupational, Feeding, Physical, ABA, and school therapists are all part of Charlie’s team. She is now physically stronger and more stable, her fine motor skills are improving as she is almost able to color and use utensils independently, and she is now using two or three words in a sequence on her talker. This is a marathon, not a sprint. Everyone communicates regularly, and we pivot based
on Charlie’s needs and focus. Right now, Charlie gets all the therapies (over 20 hours per week) and we will continue on this path guided by Charlie, and her amazing staff.