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.

Recent recognition of the co-occurrence of autism and gender diversity has led researchers to investigate the unique experiences and mental health of individuals at this intersection. Past research has indicated that autistic, gender diverse individuals experience poorer mental health compared to those who are either a gender minority, autistic, or those who belong to neither of these groups. Given the correlation between parent and child health, and recent reports from parents regarding increased support needs at this intersection, it is important to address the health and unique needs of parents among this population. This cross-sectional, survey-based study aims to investigate parent-reported stress and mental health of parents whose adolescents are autistic and gender diverse, in comparison to those who belong to only one of these minority groups (gender diverse or autistic) or neither group. Additionally, the study will examine how parental perceived social support, as well as parent-reported autism characteristics and quality of life in their children, may be associated with parental stress and mental health in parents of autistic, gender diverse adolescents. The findings from this study will improve understanding of the mental health and stress of parents whose adolescents are autistic and/or gender diverse, along with what factors are associated with their well-being. These findings have the potential to inform future work testing supports addressing the needs of this sub-population.

What are the goals of the study?

The goal is to address gaps in the literature related to parents of autistic, gender diverse adolescents. I hope to learn about parental stress and mental health in groups that have not previously been thoroughly explored (parents of gender diverse adolescents and parents of autistic, gender diverse adolescents). I hope to identify factors associated with mental health and stress among these parents that can inform future research and practices.

What will happen during the visit or online?

Participants will fill out an online eligibility survey (aprox. 5 min long). If eligible, they will receive an email with a link to the online study survey. This is a 30-45 min survey in which participants answer questions related to themself and their adolescent. Upon completion of the survey, they will be emailed a $15 Amazon gift card.

How will this help families?

This project will contribute to our understanding of parent mental health and possible risk/protective factors among parents of adolescents in general and among specific at-risk populations. Understanding parent mental health and stress among families in these understudied subgroups can help drive future research around supports for families of gender diverse autistic youth, with the potential to improve quality of life of both parents and autistic adolescents.

We are excited to invite you to participate in our upcoming survey where you can win a $50 Amazon gift card for participating! At Hofstra’s Diagnostic and Research Institute for Autism Spectrum Disorders (ASD), we are committed to advancing knowledge and understanding in families parenting autistic children. The current study titled, “The Relationship Between Dyadic Coping and Couple Satisfaction for Parents with Autistic Children” utilizes a survey that takes approximately 10 minutes. Your input will contribute to the body of knowledge in autism research. Survey Link: https://tinyurl.com/hofstraasd

What are the goals of the study?

The goal of the current study is to further understand how parents with autism utilize coping mechanisms to overcome stress and achieve satisfaction within their relationships.

What will happen during the visit or online?

You will take a 10 minute survey.

How will this help families?

This may help in understanding the support systems in place for children with autism and contribute to the positive research surrounding autism and families that have autistic children.

Researchers at Seattle Children’s are looking for parents of 2 to 12 year old children with autism spectrum disorder to take part in an online survey study and an in-person EEG visit. We will use a variety of neuroscience, behavioral, and self-report techniques to first understand if there are unique emotional or behavioral considerations for families of children with neurodevelopmental disorders and challenging behaviors and if these characteristics influence participation in and completion of interventions.

What are the goals of the study?

This study is being done to learn more about parents’ emotion processes and problem-solving in families of children with neurodevelopmental disorders and behavior problems. For families who participate in this study, parents will complete several questionnaires and one lab-based visit to measure brainwaves with an EEG while completing some problem-solving or other tasks.

What will happen during the visit or online?

Parents will complete about 1 hour total of questionnaires (about themselves and their children) and 1.5 hours of an in-person visit. During the in-person visit, parents will complete 15 minutes of problem-solving activities and 1 hour of EEG (i.e., measurement of brainwaves while playing games).

How will this help families?

Findings will help us support families enrolled in interventions targeting challenging behaviors.

RAYS, a Brown University research study, is aimed at studying the outcomes and development of autistic teens and young adults aged 12-24 as they navigate adolescence to early adulthood.

What are the goals of the study?

The goal of RAYS is to examine the challenges and problems that adolescents and young adults on the autism spectrum experience over the course of adolescence and young adulthood, especially their exposure to alcohol and other drugs.

What will happen during the visit or online?

Participation involves 4 interviews over 3 years, each one year apart after the initial assessment. The study consists mainly of interviews and filling out questionnaires on mood, behavior, alcohol and other drug use, and relationships with family and friends. Teens/young adults can earn up to $395 for participating over the course of the study and parents/guardians can earn up to $225. All visits can be done remotely or in-person. The length of the visits vary by timepoint. Our baseline assessment generally takes 3-4 hours, T2 takes about one hour, T3 takes about 3 hours and T4 takes about one hour. All assessments can be broken up into multiple sessions if needed or completed in one sitting – we leave it up to the participant. If a participant is over 18 years old, their parent/guardian does not need to participate in order for the young adult to participate. If their parent/guardian would like to join the study at a later point, we will try to accommodate enrolling them. 

How will this help families?

This study can help researchers better understand the experiences of adolescents and young adults on the autism spectrum.

In this study, we want to investigate the views of autistic and neurotypical individuals on hobbies. The study consists of a series of short questions assessing demographics, the AQ-28 (an autism trait questionnaire), your hobbies, and the place they have in your daily life. The questionnaire takes approximately 15 minutes to complete. Anyone aged 18 years or older can participate. Through this study, we hope to give insight into the perspective of adults with autism while also allowing us to promote the positive impacts of hobbies, leading to a higher quality of life in people with autism. In addition, there is a general lack of research on this specific subject.

What are the goals of the study?

The aim of the study is to get a better understanding of the role of hobbies in the lives of autistic adults and how this compares to adults without autism. In addition, the description of autism suggests that there are important differences between neurotypical and autistic individuals in their hobbies and how they engage with them. We hope to learn how they differ and if there is a need for a term to differentiate them.

What will happen during the visit or online?

Participants will navigate to the online survey and must accept the informed consent form. If accepted, the participants will answer a 15 minute mixed-method survey.

How will this help families?

This will help families gain insight into the perspective of autistic adults, and their relationship with their hobbies. As mentioned before, this study will also allow us to find ways to promote the positive impacts of hobbies. In addition, if any terms with negative connotations are identified, this study can help bring light to those negative connotations, and help remove those terms, improving the lives of those affected by autism.

Parents of children with autism spectrum disorder (ASD) experience higher rates of anxiety, depression, and poor overall well-being, particularly when their child engages in challenging behavior, (e.g., aggression, self-injury, property destruction). Acceptance and commitment therapy (ACT), which encourages psychological flexibility and attending to the present moment, is an effective intervention for addressing well-being in parents of children with ASD when presented in various formats. Virtual group ACT can increase accessibility and improve social connectedness for parents. However, recent literature suggests that the time commitment may impact parents’ participation in interventions focused on their well-being. The current study will examine parents’ participation in and perceived acceptability of 6 hours of virtual ACT groups when administered in three different formats: a 6-hour workshop, three 2-hour sessions, and six 1-hour sessions. Participants will include 36 parents of children with ASD and co- occurring challenging behavior randomized across nine groups (i.e., three groups of four participants per format). All participants will attend a virtual intake interview, receive 6 hours of ACT group intervention, and participate in two virtual individualized parent training sessions to learn and practice behavioral intervention techniques when faced with treatment challenges. Primary outcomes of feasibility and acceptability include parent participation and acceptability ratings. Secondary outcomes include change in psychological flexibility and well-being after participating in ACT groups and procedural fidelity when implementing the behavioral intervention. Findings can inform future research examining virtual ACT groups for parents delivered in conjunction with their child’s behavioral services by exploring which format may lead to higher parental engagement in an intervention to improve their well-being, which can ultimately improve outcomes for both parents and children.

What are the goals of the study?

By directly assessing parents of children with ASD’s format preferences and perspectives on how parental support activities could increase engagement, we can better inform future iterations of the virtual ACT group intervention to best meet the needs of this population. Incorporating community voices into the development of interventions is associated with increased engagement and overall benefit; therefore, it is critical to assess the perspectives of parents of children with autism on components of parental support activities designed for them.

What will happen during the visit or online?

Participants will be asked to participate in a virtual intake interview (~1 hour), 6 hours of the virtual ACT group intervention, and 2 hours of virtual parent training to support parents in addressing their child’s challenging behavior. Participants will be asked to identify another adult to assist with the virtual parent training sessions.

How will this help families?

In addition to directly addressing parent participants’ well-being and providing parents with individualized behavioral intervention strategies, outcomes have significant practical implications for mediating positive treatment outcomes for children with autism and co-occurring challenging behavior. Given that children are part of a family system and are affected by the functioning of that system, it is critical to address the well-being of family members when attempting to improve outcomes for autistic children. Further, challenging behavior and parental stress often have a bi-directional relationship, such that increased parental stress can also increase the frequency and intensity of challenging behavior. Thus, even if the child’s challenging behavior is reduced in behavioral treatment, high parental stress may decrease the treatment’s effectiveness. Though parents of children with autism tend to have significantly higher stress levels than parents of typically developing children, few intervention programs for children with autism specifically address parental well- being. As such, outcomes of this study addressing parental well-being through a virtual group ACT intervention can increase practitioners’ knowledge of the importance of addressing parental well-being as part of a child’s behavioral treatment to improve outcomes for both the child and the overall family system.

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.

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, 7 individual assessment visits, 5 brief check ins, and 10 group therapy sessions.

How will this help families?

Participants will receive 10 group therapy sessions and be compensated up to $345 for completion of assessments.

Many new parents/guardians of children first diagnosed with autism often feel anxiety about their child’s future. Many of these parents and guardians have lots of questions, such as, “Will my child be able to finish his education? Will my child be able to make friends? Will my child be able to live independently?” etc., which may possibly especially cause increased anxiety if these parents and guardians do not have the proper perceived social support that may be able to help them along the way. This in turn may affect the way these children are parented and raised and can make a great difference in the children’s lives.

What are the goals of the study?

To determine the relationship between perceived social support and future anxiety among Hispanic guardians of a child (2-18-years-old) diagnosed with autism spectrum disorder (ASD) residing in the United States

What will happen during the visit or online?

30-60 minutes of participation for the online assessment.

How will this help families?

Participants may benefit from being validated about their experiences with their child who has recently been diagnosed with ASD and will receive resources for support as needed.