Intervention Publications

Information

Kelly B. Beck, Kristen T. MacKenzie, Anne V. Kirby, Katherine McDonald, Ian Moura.  Kaitlyn Breitenfeldt, Elizabeth Rutenberg, Tanvi Kumar, Juliet Mancino, Maya Sabatello, Shannon Roth, Christina Nicolaidis 

Autism in Adulthood 2024

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Abstract

Why is this topic important?

The consent process is how researchers share information with people so they can decide if they want to be in a research study. However, the information shared is often difficult to read and studies often do not offer accommodations. People may not truly understand the risks of the study they agree to be in, or they may not be allowed to make their own decisions about taking part in a study because they cannot understand the study information. Improving consent documents and processes is critical for people to make an informed decision about being in research.

What is the purpose of this article?

We created guidelines for improving consent materials and protocols. Our guidelines aim to support accessible and inclusive informed consent processes in autism and intellectual disability research.

What personal or professional perspectives do the authors bring to this topic?

We put together a “consortium” or a group of teams. Our consortium includes teams of neurodivergent (e.g., autistic, attention-deficit/hyperactivity disorder, acquired neurodivergence) and neurotypical researchers, community members, and advocates. Members bring both lived and professional experiences working to improve inclusive and ethical research procedures. We used participatory methods because lived experience is central to respectful, impactful science that is tailored to the needs of specific populations.

What did the researchers do?

We created guidelines for improving informed consent materials and processes for research with autistic people and people with intellectual disability. We based these guidelines on our experiences working with our universities on multiple research studies with autistic people and people with intellectual disability. The guidelines were acceptable both to the community and our universities.

What do the authors title?

Improve the understandability of consent materials:

• Start with consent checklists instead of templates.
• Improve written language and formatting.
• Use participant-centered language.
• Use precise and concrete phrasing.
• Structure documents in a logical order.
• Integrate visuals and/or multimedia.
• Simplify and integrate authorization language, as needed.

Create accessible consent procedures:

• Minimize environmental and executive functioning barriers.
• Allow the use of electronic consents, as applicable.
• Provide options for a range of communication needs.
• Support decision making.
• Consider whether a consent competency assessment is necessary.
• Consider people with decisional impairment.

We offer accessible language, checklists, and consent document examples. We recommend that researchers work with their universities or other research institutions to make changes to university-wide templates and guidance. We highlight the importance of developing strong community partnerships and including community members in attempts to make research more inclusive.

How will these recommendations help autistic adults and people with intellectual disability now or in the future?

Making an informed decision to participate in research is a right. However, researchers often use complex informed consent language in disabling environments. These guidelines encourage researchers to partner with community members and representatives of research institutions to change informed consent forms and processes. These guidelines also encourage researchers to evaluate and make changes to consent procedures to be more inclusive. We believe such efforts can improve the ethical inclusion of autistic people and people with intellectual disability in research.

Information

Kelly B Beck , Heather J Nuske , Emily M Becker Haimes , Gwendolyn M Lawson , David S Mandell 

Psychiatric Serivces 2024

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Abstract

Autistic and other neurodivergent youth face social, sensory, and environmental challenges at school that negatively impact learning and well-being. Yet, most educators are not trained in neurodevelopmental disabilities, leaving them with outdated knowledge and limited confidence about how to support neurodivergent youth at school. In a two-phase project, we sought to (1) co-design a comprehensive professional development training for school educators and (2) pilot test this training in one US public school district. First, we used community-based participatory research methods to form an interdisciplinary team of neurodivergent educators and autistic community members. We then used human-centered design methods to iteratively design the Schools Unified in Neurodiversity professional development training for US K-12 educators. In Phase 2, we demonstrated feasibility and acceptability of the resulting training in a sample of 192 educators, grades K-12. Significant improvements were noted in educator knowledge and self-efficacy in pre- to post-assessments. Together, community-based participatory research and human-centered design provided a promising community-driven approach to development, resulting in a training that was well received and conducive to implementation. Future work will test the effects of the Schools Unified in Neurodiversity training on youth outcomes and explore the role of professional learning communities to support implementation and sustain change.

Lay Abstract

Neurodivergent children are children who have neurodevelopmental or cognitive disabilities (e.g. autism spectrum disorder, attention deficit hyperactivity disorder, brain injury, dyslexia, Tourette’s, and other neurological disorders). Neurodivergent children have heightened risk for mental health problems and poor learning outcomes compared to their peers. Sadly, school experiences contribute to these poor outcomes. Every day, neurodivergent children face a multitude of barriers and negative events at school that exacerbate their neurocognitive, sensory, and social communication differences, and even make them feel unsafe. Educators do not have the knowledge of how to support neurodivergent children and cannot practically provide individualized supports to each neurodivergent child in their classroom. A new approach is needed to ensure that school is a positive, enriching experience instead of the stressful, negative experience that it is for most neurodivergent students. This project aimed to transform schools for neurodivergent children by giving public school educators the knowledge they need to create a safe and inclusive school climate for all children. We developed the Schools Unified in Neurodiversity training with a group of researchers, teachers, counselors, principals, administrators, and advocates all with personal connections to neurodiversity. The Schools Unified in Neurodiversity training program teaches a series of practical tools to design classrooms and instruction in ways that eliminate unnecessary barriers and set neurodivergent children up for success at school. We tested the Schools Unified in Neurodiversity training program in one school district with 192 educators. Results suggest that this program is agreeable to teachers and improves their knowledge and confidence in supporting their neurodivergent children. Future work will test how the Schools Unified in Neurodiversity training program helps neurodivergent youth directly and if teachers can sustain these positive changes in knowledge and confidence.

Information

Jamie Kulzer, Kelly Beck, Caitlin Trabert, Eric Meyer, Jenna Colacci, Michael Pramuka, and Michael McCue

Journal of Vocational Rehabilitation 2023

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Abstract

Background: There is an urgent need for services that support a successful transition to postsecondary education and employment for young adults with neurodevelopmental and cognitive disabilities (e.g. autism spectrum disorder, attention-deficit/hyperactivity disorder, traumatic brain injury).

Objective: The purpose of this expository article is to describe the Cognitive Skills Enhancement Program (CSEP), a comprehensive clinical program designed for young adults with neurodevelopmental and cognitive disabilities transitioning to postsecondary education. METHODS:CSEP was developed through a community-academic partnership between a university and a state vocational rehabilitation program. Young adult participants complete programming that addresses four primary clinical targets: (1) emotion regulation, (2) social skills, (3) work readiness, and (4) community participation with the overall goal to increase awareness and promote successful employment outcomes while they transition to post-secondary education.

Results: To date, CSEP has supported 18 years of sustained programming and clinical services to 621 young adults with neurodevelopmental and cognitive disabilities.

Conclusion: This partnership model allows for flexible responses to participant needs, implementation barriers, and advances in evidence-based practices. CSEP meets the needs of diverse stakeholders (e.g. state vocational rehabilitation, post-secondary training facilities, participants, universities) while providing high-quality and sustainable programming. Future directions include examining the clinical efficacy of current CSEP programming.

Information

Kelly B. Beck,  Jessie B. Northrup,  Kaitlyn E. Breitenfeldt,  Shannon Porton,  Taylor N. Day, Kristen T. MacKenzie, Caitlin M. Conner, and Carla A. Mazefsky

Autism 2022

Free Access

Abstract

Emotion dysregulation underlies psychiatric symptoms and impedes adaptive responses in autistic individuals. The Emotion Awareness and Skills Enhancement (EASE) program was the first mindfulness-based intervention designed to target emotion dysregulation in autistic adolescents (12-17 years old). This project partnered with stakeholders to adapt EASE for autistic adolescents and adults with co-occurring intellectual disability and autistic elementary-aged children, groups who often benefit from caregiver support in treatment. Over three adaptation phases, we: 1) elicited stakeholder and expert feedback to adapt the original EASE program for autistic individuals with intellectual disability; 2) redesigned the adapted manual and expanded the target age range following a small “micro-trial” with a sample of autistic adolescents and adults with intellectual disability (n=6); and 3) demonstrated feasibility and acceptability of a caregiver-client team-based approach (EASE-Teams) in a sample of 10 autistic individuals with and without intellectual disability (ages 7-25) and their caregivers. EASE-Teams was both acceptable and helpful to families. Significant improvements were noted in participant emotion dysregulation, psychiatric symptoms, and caregiver stress from their child’s dysregulation. Findings suggest that EASE-Teams may be appropriate for heterogeneous developmental and cognitive needs. Future research to establish efficacy and refine EASE-Teams with community providers is warranted.

Information

Kelly B. Beck,  Carol M. Greco,  Lauren A. Terhorst,  Elizabeth R. Skidmore,  Jamie L. Kulzer and  Michael P. McCue 

Mindfullness 2020

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Abstract

Objective: Adults with autism spectrum disorder (ASD) consistently report lower quality of life (QOL) compared with peers. Despite the growing population and needs of adults with ASD, many psychosocial interventions target children and adolescents while relying on high-level cognitive strategies for symptom reduction. Mindfulness-Based Stress Reduction (MBSR), which cultivates awareness and regulation skills through experiential practice instead of cognitive strategies, has been modified for autistic samples across the lifespan. However, it has not been tested if the standard MBSR curriculum is appropriate for an autistic population to improve QOL.

Methods: This pilot feasibility trial aimed to (1) establish the feasibility and acceptability of a MBSR group intervention with adults diagnosed with ASD without modification; (2) evaluate fidelity to the MBSR curriculum; and (3) calculate estimates of change in QOL, life satisfaction, positive outlook, and mindfulness. Participants included twelve adults with ASD (IQ > 70; age 22–63). Participants completed the intervention and pre-, mid-, and post-assessments.

Results: Participants reported high satisfaction with the intervention on CSQ-8 (M = 27.92, SD = 3.5) with 100% retention. Randomly selected sessions met fidelity review on the MBI-TAC. Effect size estimates suggested large improvements in positive outlook (F(2,22) = 12.42, p < .001, d = 2.12), satisfaction with life (F(2,22) = 3.22, p = .059, d = 1.08), mindfulness (F(2,22) = 3.34, p = .054, d = 1.10), and quality of life (F(2,22) = 3.09, p = .066, d = 1.059).

Conclusions: This study established feasibility and acceptability of traditional MBSR for adults with ASD and identified key supports for implementing MBSR with ASD.

Information

Kelly B Beck , Caitlin M Conner , Susan W White , Carla A Mazefsky 

Journal of the American Academy of Child and Adolescent Psychiatry 2020

PAID Access

Abstract

Mindfulness-based interventions (MBIs) are increasingly popular and have a growing empirical basis of support for improving physical and mental health, general functioning, and quality of life. MBIs are an especially attractive approach to improve emotion regulation (ER) in adolescents who have autism spectrum disorder (ASD), as they are thought to directly target ER and can be tailored to individual needs, symptoms, and cognitive capacity. Despite growing interest in MBIs for adolescents with ASD, there are few clinical delivery resources to support clinicians untrained in the use of mindfulness within therapy. This article uses an ASD-specific MBI as an exemplar to outline common challenges and solutions for clinicians using MBIs with adolescents with ER impairment. Mindfulness teaching practices described in this article have been trialed and refined over several years with >40 participants, across three different sites, and with 16 clinicians from four clinical professional backgrounds-most of whom had no prior experience with MBIs-in the Emotion Awareness and Skills Enhancement (EASE) program trials with adolescents with ASD. Although we describe the use of an MBI program with adolescents with ASD, the suggestions offered herein are relevant to use of MBIs with other clinical populations and include basic strategies for mental health professionals untrained in MBIs to enhance delivery to patients with ER impairment.

Information

Caitlin M Conner , Susan W White ,  Kelly B Beck ,  Josh Golt ,  Isaac C Smith ,  Carla A Mazefsky 

Autism 2019

Free Access

Abstract

Emotion regulation impairments are common among individuals with autism spectrum disorder and are believed to often underlie commonly seen problems with aggression, depression, and anxiety. The Emotional Awareness and Skills Enhancement program was developed to reduce emotion regulation impairment and thereby improve behavioral disturbance, via mindfulness. Emotional Awareness and Skills Enhancement consists of a 16-week individual therapy treatment targeting emotion regulation impairments among individuals with autism spectrum disorder. We describe the conceptual framework and development of the program and present data on feasibility and preliminary efficacy from a pilot trial. The Emotional Awareness and Skills Enhancement manual was developed using a participatory action framework, based on emotion regulation research specific to autism spectrum disorder and input from individuals with autism spectrum disorder, therapists, and parents of children with autism spectrum disorder. Emotional Awareness and Skills Enhancement was piloted in a two-site open trial with 20 participants with autism spectrum disorder (12-17 years old, confirmed autism spectrum disorder diagnosis, IQ > 80).Outcome data support program feasibility and acceptability to participants, as well as significant improvement in emotion regulation impairments and related concerns.Findings offer preliminary support for both the feasibility and clinical effectiveness of the Emotional Awareness and Skills Enhancement program.