EASE– Emotional Awareness and Skills Enhancement Study
Although there is clearly an urgent need for effective interventions to support emotional control and emotional well-being in ASD, the currently available options are very limited. Psychotherapeutic intervention approaches predominantly focus on the use of one specific technique called cognitive-behavioral therapy (CBT) to treat one specific issue, e.g. anxiety in ASD. Issues such as explosive behavior, irritability, meltdowns, social withdrawal or shutting down, and feelings of sadness and depression are not adequately addressed by current approaches. We have adopted a broader approach that targets the underlying process that we believe contributes to all of these issues – emotion regulation. Together with her collaborator, Dr. Susan White from the University of Alabama, Dr. Mazefsky has developed a new emotion regulation intervention for ASD called Emotional Awareness and Skills Enhancement. This research study is evaluating EASE in verbal 12-21 year olds with an IQ>80 who struggle with handling their emotions.
Participants will be randomized to either EASE Therapy or Supportive Therapy. Both programs involve 16 weekly individual therapy sessions. There is no cost for this program and we offer payments for completing the assessments. There is also an optional part of the study designed to help us understand how the brain responds to emotions. This involves viewing pictures and playing a game on a computer while wearing a cap with sensors and cables attached that measure brain activity called Electroencephalography (EEG). EASE is actively seeking participants. To find out more and to see if you qualify, please contact email@example.com or 1-866-647-3436.
Electroencephalography (EEG)-based brain computer interface (BCI) systems with EASE participants
To address the significant need for emotion regulation (ER) treatment for adolescents and adults with autism spectrum disorder (ASD, The Emotional Awareness and Skills Enhancement (EASE) Program was developed as a behavioral intervention technique by Dr. Carla Mazefsky. EASE is designed to improve ER. Behavioral intervention techniques are the mots effective type of therapy for ASD, but the rate of generalization of such techniques from the clinical settings to real life is on average only around 48%.
There is a growing interest in complimenting behavioral clinical treatments with low-cost and easy-to-access technology-based tools to improve therapy effectiveness. However, it was shown that training thought existing technology-based ASD interventin tools does not usually generalize to real-life activities due to the lack of authenticity in the responses from the individuals during training. In this study, Dr. Murat Akcakaya, PI, aims to develop an EEF-based brain computer interface (BCI) as an intervention tool to tightly complement the EASE treatment program for emotion regulation. The study will:
- -monitor participant responses by analyzing EEG patterns associated with ER;
- -classify between distressed and non-distressed conditions;
- -identfy different distress levels;
- -provide visual cues based on the increased distress levels to reinforce the participants to use EASE emotion regulation strategies i real-time during EEG-guided training.
The EEG will also be implement in virtual reality to provide more immersive interactions. It will be tested with 50 EASE participant throughout the project.
The Emotion Awareness and Skills Enhancement (EASE) Program for Autism Spectrum Disorder and co-occurring Intellectual Disability (EASE-ID)
We now seek to extend the benefits of EASE to youth with ASD and co-occurring intellectual disability (ASD-ID) and evaluate its impact on sleep and overall physical health. Guided by a family advisory panel of parents of teens and adults with ASD-ID and parents of youth who completed EASE, EASE is being modified to best meet the needs of clients with ASD-ID. We hope that improving self-regulation through EASE-ID will alleviate some of the most common comorbidities in ASD (e.g., sleep, psychiatric problems) and have cascading effects on overall health. This project will fill a void in evidence-based non-medication treatments for youth with ASD-ID to support increased self-management in the transition to adulthood.
EASE-ID is currently enrolling participants for the pilot trial. We are enrolling 12- to 25-year-old individuals with ASD and ID diagnoses and an nonverbal IQ>50. EASE-ID will involve 16 weekly therapy sessions. There is no cost for the program and we offer payments for completing the assessments. In addition to questionnaires and interviews, participants’ sleep will be monitored with a wrist-worn actigraphy watch. All participants will receive EASE-ID. If you are interested in learning more about the research study, please email: firstname.lastname@example.org or call toll free 1-866-647-3436.
Autism Inpatient Collection
The Autism and Developmental Disabilities Inpatient Research Collaborative (ADDIRC) is a collaboration of specialized child psychiatry hospital units that serve children and adolescents with autism and developmental disorders. The primary goal of the ADDIRC is to develop a comprehensive registry of clinical and biological data on children and young adults that are severely affected by autism called the Autism Inpatient Collection (AIC). Researchers at the inpatient units that comprise the AIC are examining the dimensions of language ability, emotion regulation, psychiatric comorbidity, aggression, self-injurious behavior, intelligence, and the relationships among these critical factors. This year, ADDIRC researchers also started testing whether proximal onset of aggression can be predicted from preceding physiological signals using wearable biosensor devices. We hope to use this information to develop a device that can help predict aggression before it occurs.
Eligibility for enrollment into the study is based on admission into one of the four inpatient units that currently makes up the AIC, including Western Psychiatric Hospital’s John Merck Inpatient Unit in Pittsburgh. For more information about the Pittsburgh site, please contact Geoffrey Keller at email@example.com and 412-334-1356 or Kara Duman at firstname.lastname@example.org and 412-529-9429.
For more information about ADDIRC and AIC, including links to the other inpatient units, visit: http://mmcri.org/ns/?page_id=1089
The AIC is proud to partner with SPARK, an online autism research partnership that seeks to improve the lives of people with autism through research. The goal of SPARK is to accelerate autism research in order to gain a better understanding of causes and treatments for autism. To learn more about SPARK, visit: https://sparkforautism.org/ .
Development of the Positive and Negative Inventory for ASD (PNI)
Led by Dr. Jennifer Foss-Feig at Mt. Sinai, Dr. Mazefsky and her colleagues will develop and validate a dimensional observer-report measure of positive and negative features of ASD. The overall objective of this proposal is to use gold-standard procedures to develop and validate a psychometrically rigorous, sensitive new measure to quantify variability within ASD along novel, biologically-plausible dimensions that can concretely be targeted for intervention and measurably show change. Learn more about the research award here.
More information coming soon.
Developing a Gold Standard for Tracking Adult Functional Outcomes in Autism Spectrum Disorder
A major methodological obstacle to more informed policies to support the successful transition to adulthood is the absence of suitable measures of functional outcomes for adults with ASD. Landmark studies of adult outcome have traditionally classified individuals as having good, fair, or poor outcomes,21 a rating which has low reliability and is generally insensitive to treatment-related changes. Other studies have utilized adaptive behavior scales as functional outcome measures even though they were not designed for that purpose or measures that have never been evaluated in ASD. The objective of this project is to develop efficient and validated informant and self-report measures of functional outcome for adults with ASD – the Adult Functioning Scale (AFS). In the final year of the project, we will collaborate with investigators at Drexel and the University of Pennsylvania to and establish the validity of the AFS utilizing state-level service utilization data. The availability of the Adult Functioning Scale for ASD is likely to yield a precise, efficient, and sensitive measure, which in turn would improve progress monitoring capabilities and support more informed adult transition policies.
More information coming soon.
Change-sensitive Measurement of Emotion Dysregulation in ASD
Problems with emotional control and emotional distress in autism spectrum disorders (ASD) are common and have a significant negative impact on daily life. Treatment options for these problems are limited, in part because we lack validated measures of emotion dysregulation for ASD. Most measures of emotional concerns use language that does not apply to individuals with ASD who are non-verbal or minimally verbal (e.g., “complains about, ” “worries about”) and they fail to cover the full range of presenting symptoms. The overall objective of this project is to develop and validate the Emotion Dysregulation Inventory (EDI), a new, sensitive outcome measure suitable for use across the spectrum of ASD severity and verbal ability. Although the primary goal is related to measure development, this study will also produce the largest existing data set of symptoms of emotion dysregulation in ASD, which will provide an opportunity to better understand emotion dysregulation in ASD. Improved understanding of emotion dysregulation in ASD will clarify treatment needs, allowing for more refined clinical trials. In addition, better measurement of emotion profiles may enhance the capabilities of genetic and neuroimaging research by capturing variability within ASD. Finally, because the EDI is a dimensional measure of emotional domains that are also of interest in non-ASD fields of developmental psychopathology, there will be a new opportunity for studies across populations.
Data is being collected in collaboration with the Autism Inpatient Collection (AIC) project and Interactive Autism Network (IAN).
Emotion Dysregulation Inventory (EDI)
Emotion dysregulation (ED) is defined as difficulty adapting one’s own emotional state to promote adaptive behavior and is considered a defining feature of nearly every psychiatric disorder. Rates of clinically impairing ED are especially high among those with autism spectrum disorder (ASD). Effective treatment of ED may greatly reduce morbidity and costs and significantly improve quality of life for individuals with ASD.
We have developed the Emotion Dysregulation Inventory (EDI), a caregiver report that measures rapidly escalating, intense, and poorly regulated negative emotion. We validated the EDI on 1755 school-aged verbal and nonverbal ASD youth and 1000 youth representative of the 2010 US census. The EDI is being used in multiple clinical trials and for screening and treatment monitoring in inpatient and outpatient settings in the U.S. and 10 other countries, with patients with ASD, other intellectual and developmental disabilities (IDD), and general psychiatric populations.
We will build on the EDI’s strengths to develop the EDI-Young Child (EDI-YC for ages 2-5) and the EDI Self-Report (EDI-SR for ages 12+). This project has the potential to substantially reduce the lifetime burden resulting from ED. The availability of the EDI-YC will motivate ED prevention and intervention in early childhood during this critical period of early brain plasticity. At the other end of the lifespan, concerns about the validity of self-report in those with cognitive impairment or poor emotional awareness have limited the incorporation of patient perspectives and have biased studies against including adults who do not have a caregiver available for assessments. The EDI-SR will be developed through a systematic item refinement process to ensure validity, thereby generating a new opportunity to incorporate patient-reported experiences and outcomes in an overlooked and growing group of adults with ASD. The impact will span outcomes from aggression to suicide and other critical symptoms related to ED.
The map below shows current locations using the EDI, with more added each week.
Christchurch, New Zealand
East Lansing, MI
Fort Worth, TX
Grand Ledge, MI
London, United Kingdom
Los Angeles, CA
New Brunswick, NJ
New York, NY
San Bernardino, CA
San Francisco, CA
Santa Barbara, CA
San Diego, CA
Stony Brook, NY
Surrey, British Columbia
Vancouver, British Columbia
White Plains, NY
La Conner, WA
Current Studies Affiliated with REAACT
Perspectives Program – Help for Adults with ASD
Psychosocial treatment, or non-drug interventions involving psychological and social therapy, may help adults with autism spectrum disorder learn to interact better with others, manage their emotions, feel more comfortable in social situations, and accomplish their life goals. The Perspectives Program aims to study how to best help adults with ASD using psychosocial treatment. Participants will be treated for up to 18 months with either Cognitive Enhancement Therapy or Enriched Supportive Therapy. These psychosocial research interventions provide support and are designed to improve social function, problem solving, stress management and more. In addition to receiving these research interventions, participants may also be asked to complete interviews, computer testing, and diagnostic assessments. Participants will be compensated for completing these activities, and will not be billed for treatment provided by the program. The Perspectives Program is looking for individuals with ASD, between the ages of 16-45 years old who have an IQ>80. To find out if you or someone you live with may be eligible, call the University of Pittsburgh Center for Excellence in Autism Research toll free at 1-866-647-3436 or email email@example.com. Learn more at www.ascend.pitt.edu/perspectives