RISE

In this study, we are interested in understanding how infants learn about their world from their response to child-friendly videos they can watch at home. For example, we know from studies in the lab that many babies enjoy looking at social stimuli and are able to remember faces they have seen before. In this study, we are testing to see what we can learn about your babies cognitive development at home. This work may help us identify children with developmental delays in the future. To participate, you and your baby will watch a series of videos on your home computer. We will also ask you to answer questions about your child’s development.

What are the goals of the study?

We want to understand how babies look at and learn from the patterns in the world around them. This is part of a larger study we are running to understand how typically developing babies might learn about their world in different ways than babies with developmental delays.

What will happen during the visit or online?

In this study, your baby will see a series of videos while we record how they respond. These videos include children playing, geometric figures, objects, and patterns. After the videos, we will ask you to complete some surveys within the LookIt platform, and some will be sent to you later. These surveys are common in infant research and cover many different areas of development. You can follow the links below to learn more about each survey. Communication and Symbolic Behavior Scales (CSBS) Infant-Toddler Checklist measures the social communication, expression of speech and language, and symbolic abilities of children ages 6 months to 2 years. MacArthur-Bates Communicative Development Inventories measures communication and language development in babies and toddlers from 8 to 37 months (about 3 years) of age. Motor-Libertus Early Motor Questionnaire (EMQ) measures the development of early motor skills (such as raising and holding their own head, rolling over, and crawling) in infants and toddlers. Vinland and Adaptive Behavior Scale (VABS) measures communication and social relationships in infants and toddlers to understand home and family-life behaviors. Modified Checklist for Autism in Toddlers (M-CHAT) (only at completed for 18-month-old children) screens for signs of autism spectrum disorder in toddlers.

How will this help families?

This work may help us identify children with developmental delays in the future.

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.

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.

Recent work suggests that mothers of children with disabilities are at increased risk for accelerated cognitive aging. Mothers of children with autism spectrum disorder (ASD), in particular, may be especially susceptible to atypical aging given their elevated rates of key risk factors for dementia relative to mothers of typically developing children or children with other neurodevelopmental disorders. A significant number of mothers of children with ASD (up to 65%) continue to be caregivers for their adult children, resulting in increased stress, depression, loneliness, reduced social support, and poor sleep, all of which are risk factors for dementia-related disease. This NIH-funded study conducted by Dr. Laura Friedman at the University of South Carolina aims to address gaps in the literature on cognitive decline in mothers of children with ASD and associated risk factors.

What are the goals of the study?

Findings from this study will provide insight into atypical cognitive aging among mothers of children with ASD as well as potential risk factors. This will shed light on the need to monitor aging in this group, which may have broader consequences on their children who continue to live at home and depend on their parents as caregivers after high school.

What will happen during the visit or online?

You will complete 1 hour of surveys about various topics related to your life, including your memory and mental health. Then you will complete a 2 hour interview via Zoom with a trained examiner who will ask you questions about your experiences. You will also complete measures of thinking skills and attention.

How will this help families?

This study will contribute to our understanding of the potential link between autism and dementia-related disease, and is an important step in identifying the need for and advocating for family-centered supports through the lifespan.

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 want to measure brain rhythms in children/teens with and without ASD during overnight sleep at home using wearable sleep headbands.

What are the goals of the study?

We’re hoping to learn more about differences in brain rhythms during sleep. Since lab-based sleep studies are expensive and burdensome, a sleep headband that could accurately and comfortably measure sleep rhythms at home would allow us to study more people over longer periods of time and help us learn more about sleep disruptions in different populations.

What will happen during the visit or online?

We will send a sleep headband to participants and conduct a remote training session to teach participants how to set it up and use it. Participants will then sleep at home with the headband for up to 3 consecutive nights. We will have daily checkins and offer remote technical assistance as needed. Participants will answer some questionnaires and surveys, and return the headband in a pre-paid box at the end of the study.

How will this help families?

Learning more about sleep differences may help us develop treatments for sleep difficulties in the future.

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 GEMMA (Genome, Environment, Microbiome, and Metabolome in Autism) project aims to understand the many factors that contribute to the development of autism in children who have an autistic sibling.

What are the goals of the study?

The GEMMA project aims to understand how genes, the environment, gut bacteria, and the digestion of food may relate to the development of autism.

What will happen during the visit or online?

  1. Online surveys about food, health, and behavior,
  2. Behavioral assessments (on Zoom) every 6 months from ages 1 to 3,
  3. Periodic saliva, urine, stool, and blood samples (done at home/locally) until age 3,
  4. One time samples from one or both biological parents and from the sibling with ASD

How will this help families?

Your family will be contributing to research that aims to help improve the early diagnosis of autism, as well as understand the GI symptoms associated with autism. All infant participants will receive early developmental assessments from study psychologists.