Boosting Engagement and Skill Acquisition through technology and personalization: A pilot trial of enhanced transdiagnostic behavioral therapy

Researchers at Rutgers University are conducting a research study to evaluate a 10-session telehealth-based group therapy program.

What are the goals of the study?

The purpose of this study is to evaluate the feasibility, acceptability and effectiveness of an adapted telehealth Group Behavioral Activation Therapy (GBAT+) for autistic adults. GBAT+ is intended to help adults manage stress, anxiety, low moods, and anger.

What will happen during the visit or online?

Eligible people will be asked to complete questionnaires, 5 individual assessment visits, and 10 group therapy sessions.

How will this help families?

Participants will receive 10 group therapy sessions and be compensated up to $230 for completion of assessments.

The current study is being conducted by Drs. Knutson, Viskupic, and Wiltse from South Dakota State University. This is a collaborative initiative to gain insight into various areas impacting the autism community. Dr. Knutson is a clinician having worked with autistic individuals and families for 15+ years. Drs. Viskupic and Wiltse are political scientists who examine attitudes and behaviors surrounding the COVID-19 pandemic. Key points to the study: Prevalence and impact of head-directed self-injurious behavior – Attitudes surrounding supportive equipment – Impact of COVID-19 on access to treatment and healthcare choices.

What are the goals of the study?

Our goal with this study is to gain critical information impacting families who have a loved one with autism. By gathering this information, we hope to improve individual safety, treatment options, treatment accessibility, and policy change supporting family needs.

What will happen during the visit or online?

Participating means completion of an online survey through QuestionPro. You may skip any questions you do not want to answer. We anticipate it will take about 10 minutes of your time.

How will this help families?

These data will assist us in supporting families and individuals impacted by autism, head-directed self-injury, the development of supportive equipment to better protect individuals and guide treatment, and to understand how the recent worldwide COVID-19 pandemic impacted this population to support policy/planning.

My name is Samri and I am a research participant recruiter from Miami University’s Later Language Development Lab. I am reaching out to you today with the opportunity to contribute to our NIH-supported research on the development of a social communication assessment tool which targets adolescents and young adults at the age of transition. We are currently seeking participants between the ages of 14 and 21 years old with a native proficiency in English and typical hearing. We are asking that participants meet one-on-one with a member of our research team for 1-1.5 hours via Zoom to answer a series of interview questions which probe their knowledge of how to communicate in different contexts. After, the participant will be paid the sum of $30-50 via Zelle for their involvement. This study is being conducted by Dr. Trace Poll from the Speech Pathology and Audiology Department at Miami University alongside Jan Petru from Elmhurst University, who is acting as our clinical consultant for the study.

What are the goals of the study?

Specifically, we are continuing research on our development of a social communication assessment tool tailored to adolescents and young adults preparing for the transition from high school to post-school contexts. This tool that we are developing is called the Transition Pragmatics Interview (or the TPI).

What will happen during the visit or online?

This commitment includes the signing of a consent form, the completion of a brief history form, and a 1-1.5 hour meeting via Zoom to answer interview questions probing their knowledge of how to communicate in different situational contexts.

How will this help families?

The information from this project provides information on the degree to which the TPI is a valid and reliable measure of social communication. Speech-language pathologists, special educators and related professionals currently lack assessment instruments that address the population and contexts targeted by the TPI. The project will indicate how the TPI may improve on clinical judgment, or the findings of instruments less targeted to the needs of adolescents and young adults with disabilities in transition programs. Fundamentally, the results will indicate how the TPI may be refined in order to become a more valid and reliable measure.

The objective of this study is to assess the stress level and engagement of students subjected to different forms of training. The subjects will include students and trainees with learning and/or developmental disabilities in addition to neurotypical students. The training will be delivered in multiple forms: pre-recorded single viewer, prerecorded with additional participants, pre-scripted live one-on-one and/or pre-scripted live with additional participants. We aim to determine which training is least stressful and most engaging for students and if differences exist based on a specific disability with a focus on students with autism spectrum disorder.

What are the goals of the study?

The objective of this study is to assess the stress level and engagement of students subjected to different forms of training.

What will happen during the visit or online?

The subjects will be fitted with a Shimmer Glove on their hand and will wear TobiiPro glasses for eye tracking or an eye tracking bar will be used. Each subject will be asked to submit a salivary sample before each training and directly after each training. They will be asked to complete 3 trainings over 4 visits. The Neurodivergent will attend an acclimation session in which no training is offered.

How will this help families?

This could help them learn which teaching method (in-person, prerecorded video or zoom) is best for their loved one. Which will help them to be stronger advocates.

Researchers in the Vanderbilt University Medical Center department of hearing and speech sciences are running a study to better understand why some autistic people are more sensitive to everyday sounds than others and how this relates to the way the brain processes sound.

What are the goals of the study?

Although they are not frequently diagnosed, sound sensitivity disorders, including hyperacusis, misophonia, and phonophobia, are extremely common in the autistic population. The purpose of the current research study is to compare and contrast people with and without these different sound sensitivity syndromes in terms of their clinical symptoms, hearing, brain function, and mental health. By examining a group of adults with ALL levels and types of sound sensitivity (including no sound sensitivity at all), we hope to answer fundamental questions about the nature of sound sensitivity and improve the ways in which clinicians diagnose and assess patients with this common complaint.

What will happen during the visit or online?

Study participants will be asked to complete some online questionnaires and come to Vanderbilt for up to two in-person sessions. The first in-person session includes psychoacoustic (hearing) tests, interviews, and standardized psychological assessments. After that session, you may qualify for a second session that will include more hearing tests, brainwave recordings (EEG), and other measures of auditory function. There are no anticipated risks to you, and you may not benefit directly from your participation in this study, though you will have the opportunity to request a report of your study results. Following a screening questionnaire (approximately 10–15 minutes), there are two visits to the laboratory (each lasting approximately 3-5 hours) and two groups of online questionnaires (approximately 20–40 minutes each).

How will this help families?

Currently, research on autism and sound sensitivity has been limited to primarily descriptive studies of prevalence, and there is very little understanding of underlying mechanisms, let alone any evidence-based diagnostic or treatment strategies. This work will be foundational in advancing our knowledge of this problem and its underlying causes in the autistic population, which can hopefully lead the way toward better clinical care for autistic people who experience sound sensitivity in their everyday lives.

We are a group of researchers at the Centre for Addiction and Mental Health (CAMH) and University of Toronto, Toronto, Canada, doing a study, titled Knowledge, Perceptions, and Use of Psychedelics among intellectually able adults with autism spectrum condition: An online survey. We are doing this project to learn about the perception, opinions, and knowledge of autistic adults about psychedelics, and whether they have used them in the past. Psychedelic compounds are a group of chemicals that change or enhance sensory perceptions, thought processes, and energy levels.

What are the goals of the study?

These compounds are sometimes used to facilitate spiritual experiences. Psychedelic compounds have shown impressive effects in neurotypical people with depression, post-traumatic stress disorder, substance misuse, and obsessive compulsive disorder, etc. Many clinical trials of psychedelics have been published in neurotypical populations and many more are ongoing. Nonetheless, there has been only one clinical trial of 3,4-Methylenedioxymethamphetamine (MDMA), one of psychedelics) in autistic adults with co-occurring social anxiety disorder. This neglect represents mental health and research inequity. Therefore, we want to do this study to listen to voices from autistic people to guide research and practice priorities surrounding the possible future uses of psychedelics.

What will happen during the visit or online?

They will be asked for responses to the online survey regarding their opinions and past experiences with psychedelics. The survey should take between 20 to 30 minutes to complete. Any information we collect from people is private and deciding to complete the survey is voluntary. Completing the survey (or not) will not impact the care anyone receives at their medical service providers (including CAMH) now or in the future.

How will this help families?

In order to better respond to the diverse needs of autistic people and to develop new interventions for their various co-occurring mental health concerns, it is crucial to represent the ASC population in empirical research on psychedelics (Oritz et al., 2022). Obtaining the opportunity to evaluate the efficacy of this new treatment method in individuals with ASC would depend on the perspectives of the ASC population on psychedelics, as well as their willingness to try them as a potential treatment. It is important to find out what kind of research and mental health improvements are of value to autistic individuals. It is equally important to obtain their perspective prior to carrying out such studies. Moreover, it is vital to transform the experiences of autistic adults into knowledge that can be used to redefine current research strategies (Pukki et al., 2022). Valuing the voices of autistic individuals and involving their opinions can have highly beneficial consequences such as the correction of existing stigmas and misconceptions of concepts about autism and neurodiversity, and can lead clinical research towards more effective directions (Pukki et al., 2022).

Western Michigan University psychology researchers are currently seeking parents of autistic individuals/individuals with autism spectrum disorder (ASD) who are receiving applied behavior analysis (ABA) treatment to participate in a study. Previous research has examined a range of parent, child, and contextual factors associated with quality of life and psychological wellbeing in parents of children with autism. However, to date, only a small number of studies have characterized both the self-care practices and the correlates of self-care in parents of children with ASD.

What are the goals of the study?

The purpose of the research is to learn more about parental self-care practices and factors related to caring for a child with autism that impact a parent’s quality of life and self-care.

What will happen during the visit or online?

Participants will be asked to complete an anonymous online survey. The survey should take approximately 20-minutes to complete.

How will this help families?

It is anticipated that the results of this study will further the field’s understanding of the self-care practices of parents of children with autism, potentially help us identify characteristics of parents who may be at particular risk for poor self-care, and ultimately may help identify supportive mechanisms that treatment providers may be able to provide for parents and caregivers.

The current study will be conducted by a research team at the University of Maryland College Park, via Zoom and aims to teach peer type family members (PFM) such as siblings or cousins of autistic children/youth to use video prompting to support daily living skills. The primary aim of the study is to examine the PFM fidelity of implementation using a single-case design across 10 child-family member dyads. The secondary aim is to examine the effects of PFM-implemented video prompting on daily living skills of children or youth with autism using a single-case design across the same 10 dyads. The third aim of the study is to descriptively analyze the social validity of the intervention by having the participants complete an anonymous survey (for caregivers) or a Zoom session (for child/youth and the PFM). The findings will provide implications for family-involved learning of daily living skills using virtual coaching in natural settings. This study is important because autistic children and youth have benefited from step-by-step directions to learn daily routines including mealtime, brushing teeth, or doing laundry or dishes. For example, video prompting has been shown to be effective to introduce cooking, academic, functional, and social skills. Previous research shows that peer-type family members (PFM) such as siblings successfully implement interventions to support diverse skills for autistic children/youth. Thus, the use of PFM-implemented video prompting could be beneficial to support the daily living skills of children or youth with autism.

What are the goals of the study?

The study attempts to teach PFMs of autistic children/youth to use video prompting to support daily living skills. The main goal is to examine the PFM fidelity of implementation using a single-case design across 10 child-family member dyads. The secondary aim is to examine the effects of PFM-implemented video prompting on daily living skills of the same children/youth with autism. Finally, the study descriptively analyzes the social validity of the intervention by interviewing the participants.

What will happen during the visit or online?

The study will take place via Zoom for approximately 3 months with 2-3 sessions per week and the following procedure: • 5-minute questionnaire • 5-10 minutes observation of the child engaging in the everyday skills (about 1-2 weeks) • 20-minute training for PFM to use video-based learning (about 2-3 weeks) • 20-minute session for observation of, and feedback for child and PFM (about 3-4 weeks) • 5-minute observation of the child/youth engaging in everyday skills (about 1-3 times) after the training is over • 5-minute survey for caregiver, and 10-minute Zoom session with child/youth and PFM to ask for feedback about the research process

How will this help families?

We hope to better understand how peer type family members such as siblings or cousins could participate in home-based daily living skills learning and practice for autistic individuals using video clips and video prompting. Specifically, we want to understand how family members can receive training via a virtual platform, and implement the intervention to fidelity. Additionally, we want to examine how effective it is for a sibling or a cousin to facilitate video-based learning of daily living skills on the autistic individual’s outcome. Finally, we want to understand how feasible and relevant these training and intervention strategies are for caregivers, autistic individuals, and their peer type family members.

Stanford University is recruiting children with autism spectrum disorder (ASD) for a research study looking at the parts of the brain that may underlie some restricted and repetitive behaviors (RRB) in children with ASD using N-acetylcysteine (NAC), an over-the-counter dietary supplement. We will use MRI and EEG to determine what changes in the brain may be related to change in RRB severity.

What are the goals of the study?

We hope to learn the mechanisms in the brain through which NAC may be able to alter the severity of RRB in children with ASD and examine whether it might be able to reduce the severity of some of RRB symptoms. We also hope to determine how NAC is able to affect RRB symptoms in children with ASD and what changes in the brain may be related to change in RRB severity.

What will happen during the visit or online?

complete cognitive and behavioral assessments (such as IQ testing)
attempt an MRI and EEG scan
drink N-acetyl cysteine dissolved in water for a total of 12-week period

How will this help families?

Potential benefits include monitored access to utilize NAC, which cannot necessarily be considered treatment for any specific condition in children with ASD at this time. It is also likely that the knowledge gained from this study may generally contribute to better treatment options for children with ASD more broadly.

Post-pandemic, so much healthcare-related assessment is taking place remotely. This can be much more convenient for families with a child who has a complex neurodevelopmental disorder, but we need to know how the information from a remote assessment compares to an in-person one. This project aims to do just that: compare how a child performs on a series of speech, language, and motor assessments in our lab and remotely, at home. We hypothesize that children will perform at least as well when they are in a familiar place like their home.

What are the goals of the study?

This project aims to validate a remote assessment protocol for spoken language and motor skills against the same data collected in person. The purpose is to understand the relationship of scores derived from the tasks when administered in person and via Zoom.

What will happen during the visit or online?

Children with neurodevelopmental or genetic diagnoses between the ages of 2 and 18 are welcome to participate. Families will come to the Motor Development Lab at Boston University for a 2-hour in-person visit where children will participate in a series of motor and spoken-language assessments. Motor assessments will include walking back and forth on our “magic carpet”, which records each of their footsteps, playing a “flamingo game” by balancing on one leg, and putting coins into a piggy bank. Spoken language assessments will include watching a preferred video while we record children’s facial movements, attempting to repeat a set of 8 syllables, a picture-naming task, and trying some tongue-twisters. The specific spoken-language tasks for each child will be selected based on their verbal ability, so everyone has a just-right challenge. The in-person and remote assessments will be audio- and videotaped for later analysis.

At the end of the in-person assessment, families will receive $25, and we’ll make two Zoom appointments. One will be for parents to complete a set of questionnaires about their child’s history and current skills, and the other will be to complete the same spoken-language and motor tasks they just finished at home, via Zoom. Once the two remote sessions are complete, families will receive another $75 and a personalized report if they would like. Parking will be free for the in-person session.

How will this help families?

To create a data set that will help us find potential predictors of spoken language outcomes in children with neurodevelopmental (including autism) and genetic disorders, we need a highly reproducible, validated assessment protocol that can be used with children no matter what their diagnosis. The protocol must be able to be administered remotely as well as in person, because many children with these conditions do not live within easy travel distance of a clinical center and multiple in-person visits are impractical for families due to their already busy rehabilitation schedules. Valid remote assessment reduces the burden of participation in assessments and research studies for families who live in rural areas or lack the ability to take time off from work and spend money on long trips.

The Vision Lab at Old Dominion University is currently looking for volunteers ages 8 – 20 years old with and without autism for an online IRB-approved research study conducted in collaboration with Eastern Virginia Medical School. Children and young adults with autism may make and view facial expressions differently than children and young adults without autism. Video and eye-tracking can be used to study these differences. Participants interact with the researchers on Zoom and play a video game related to facial expressions while a webcam captures their facial expressions and gaze. By studying the video and eye-tracking data, we hope to identify behavioral markers that can help assess and treat children and young adults with autism.

What are the goals of the study?

The purpose of this study is to learn more about facial expressions and gaze behaviors in children and young adults with and without autism. Imaging, such as video and eye-tracking, can be used to study these differences. By studying the imaging data, we hope to identify behavioral markers that can help assess and treat children and young adults with autism.

What will happen during the visit or online?

Participants take part in two Zoom sessions with the researchers. Each Zoom session will take up to 1 hour, including breaks. In the first session, the participant will complete a brief IQ assessment. In the second session, the participant will play a video game related to facial expressions while their webcam records their reactions. Participants will also be asked to complete two take home measures (identifying emotions based on pictures of people’s eyes and a face memory test) and an optional personality questionnaire (completed by the parent for participants under the age of 18).

How will this help families?

We hope that this research will identify behavioral markers that may facilitate new computer-based tools to improve access to care and intervention at home as well as in the clinic.

Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by deficits in social communication and social interaction and restricted, repetitive patterns of behavior. Given the lack of specific pharmacological therapy for ASD and the clinical heterogeneity of the disorder, researchers at The Johnson Center and the University of Texas Southwestern are undertaking an ASD biomarker study with the goal of identifying biomarkers for determining ASD risk and developing potential therapeutic interventions.

This study may help with identifying ASD risk in very young children so that interventions and therapies can begin as early as possible – this is critical for ensuring the best developmental outcome. We will use machine learning (AI) to identify therapeutic targets that may help with addressing ASD-specific behaviors.

What are the goals of the study?

The purpose of this study is to identify biomarkers of ASD that correlate with behavioral and developmental phenotypes in order to:
1) develop and test biomarker profiles that form a diagnostics tool;
2) screen and identify children with ASD who might benefit from specific interventions; and 3) develop and test biomarker profiles that inform an instrument for monitoring therapeutic response to medical interventions; and improve the clinical well-being of affected children and increase our knowledge base of this disorder.

What will happen during the visit or online?

Your participation will require two parts:

i) Completion of 4 online questionnaires that can be done from home.

ii) Visiting a Lab Service Center, such as Quest, Lab Corp or CPL, near your home for your child to give a small blood sample.

Compensation of $125 is provided upon completion of the study.

How will this help families?

The biomarkers we identify may assist in the development of therapeutic interventions for targeted treatments for autism.