School Absenteeism in Autistic Youth

Our study is exploring the rates of and reasons for school absences in autistic students. Specifically, we are conducting a 20-day daily survey to learn more about child and family routines that impact children missing partial or full days of school. We’re also interested in how this interacts with parent stress.

What are the goals of the study?

We hope to learn more about the daily fluctuations in child behavior and routines that contribute to absenteeism so we can improve supports for schools and parents when children miss school.

What will happen during the visit or online?

1 hour virtual visit to answer questions about parent and child, then filling out a brief online attendance survey each day for 20 days

How will this help families?

We are working to better characterize the barriers that make consistent school attendance difficult for autistic children, and to better inform supports for parents and schools to make school attendance easier.

This project will evaluate the effectiveness of MINDful TIME, an 8-week mindfulness-based program designed to improve mental health in adolescents with autism spectrum disorder and their caregivers. MINDful TIME includes weekly psychoeducational group meetings conducted through videoconferencing and use of a commercially available mindfulness meditation app. We will also explore whether caregivers in the treatment group demonstrate improvements in quality of life.

This project is a collaboration between researchers at the Southwest Autism Research & Resource Center (SARRC) and the Autism Brain Aging Lab at Arizona State University.

Why this study is important: At least half of individuals with ASD experience clinically significant anxiety or depression. Mood symptoms increase significantly from childhood to adolescence and remain elevated during adulthood. Additionally, parents of children with ASD report higher levels of stress than parents of typically developing children or children with other disabilities and may experience higher stress once their children enter adolescence due to increased social-emotional difficulties. Notably, research from our group and others indicates increases in stress and anxiety during the COVID-19 pandemic in both adolescents with ASD and their parents. This project aims to improve mental health among teens with ASD and their parents through a telehealth mindfulness intervention.

What are the goals of the study?

This project will evaluate the effectiveness of MINDful TIME, an 8-week mindfulness-based program designed to improve mental health in adolescents with autism spectrum disorder and their caregivers. MINDful TIME includes weekly psychoeducational group meetings conducted through videoconferencing and use of a commercially available mindfulness meditation app. We will also explore whether caregivers in the treatment group demonstrate improvements in quality of life.

What will happen during the visit or online?

Participation involves: 1-2 hour virtual intake visit to determine eligibility; Virtual group intervention sessions (2-hour sessions that meet weekly for 8 weeks); Up to 4 virtual data collection visits before and after participating in the intervention (1-2 hours each).

Teens and caregivers will: Attend an 8-week group telehealth intervention*; Learn strategies that may help with management of stress, anxiety or depression; Receive free access to a mindful meditation app (Ten Percent Happier) and asked to regularly use it throughout the study period.

*If you do not have access to the internet, our team will provide assistance for those who qualify.

How will this help families?

This project aims to improve mental health among teens with ASD and their parents through a telehealth mindfulness intervention.

Dr. Eggebrecht and researchers at Washington University in St. Louis are mapping brain function in children with autism spectrum disorder with diffuse optical tomography.

What are the goals of the study?

Dr. Eggebrecht and researchers at Washington University in St. Louis aim to investigate brain function underlying development in children who have or are at risk for developing Autism Spectrum Disorder.

What will happen during the visit or online?

Children will complete a 1-hour brain imaging scan and developmental testing at Washington University School of Medicine in St. Louis. Parents will complete online and phone surveys from home. Families will be compensated $25/hour for their participation.

How will this help families?

We hope that, in the future, society may benefit from study results which increase our understanding of typical and altered development of brain function. We hope that in the future, optical imaging will complement the current brain imaging technologies in the management of a variety of patient populations.

In our international study, we want to find out how Selective Mutism differs from Autism Spectrum Disorder. We are particularly interested in whether the situation has an influence on certain symptoms, for example, whether symptoms occur just as frequently at home in a familiar environment as in an unfamiliar environment. A symptom could be described as a sign by which a particular mental illness can be identified. In general, mental illnesses are associated with various symptoms. Therefore, in order to recognize a mental illness, it is essential to know as many symptoms as possible and to know how often and when they occur. This is particularly important for diagnostics, but also when it comes to providing the affected children with the best possible therapeutic support. We are also interested in surveying parents of neurotypical children without mental illness to determine possible differences. The study involves six questionnaires (approximately 40 minutes) that are completed online.

What are the goals of the study?

To gain knowledge on symptoms of selective mutism and autism and whether those are context-dependent.

What will happen during the visit or online?

Fill out questionnaire

How will this help families?

There are several hints that selective mutism is comorbid in a significant portion of autistic children. This research will enhance our understanding of selective mutism and autism and will help differentiate between the two conditions.

Research has shown that certain bacteria in the gut produce substances that may enter the bloodstream and reach the brain, which my contribute to some characteristics often co-occurring with autism, such as irritability. Reducing these substances in the gut before they enter the bloodstream is a potential new approach to treating irritability associated with ASD. AB-2004, with its gut-targeted mechanism of action has the potential to fill this unmet need.

What are the goals of the study?

The study medication AB-2004 is designed to adsorb specific substances produced by bacteria in the gut and reduce their levels circulation in the bloodstream. The purpose of this study is to learn if AB-2004 may help improve irritability in adolescents compared to placebo by lowering the levels of these substances. The study seeks to determine if there is an effective dose of AB-2004 in 13 to 17 year olds with ASD.

What will happen during the visit or online?

Participants will be examined by the study doctor for any changes to their health, complete a behavioral questionnaire, and participate in blood, urine, and other testing. Blood samples will be collected only 3 times during the study. Participants will take the study medication for 8 weeks and attend 6 clinic visits (lasting 2-3 hours) over 14-16 weeks. Formulated as a tasteless odorless powder, the medication is to be taken 3x/day mixed with any soft food your child may like such as yogurt or apple sauce. You will also be asked to collect urine and stool samples.

How will this help families?

Physicians have reported that irritability impacts a majority of pediatric ASD patients. The presentation of ASD-associated irritability can very with autism severity and age and can be caused by a broad array of different factors including lack of sleep, the inability to communicate pain, and mental health conditions. Currently, there are limited treatment options available for irritability associated with ASD and those that are approved can have significant side effects. AB-2004 offers potential hope of a new therapeutic option for autism-related irritability that might improve patients’ daily lives by avoiding the side effects and risks of currently available medications for irritability of autism.

The genetic changes we study in TIGER3 have been connected with autism and developmental disabilities, but we are just beginning to learn how those changes might affect each person and family differently, and what effects might be shared versus unique across those genetic variants. By learning more about the shared and unique effects of these rare variants, we aim to contribute to (1) better understanding of co-occurring medical and behavioral conditions, and (2) development of individualized supports for affected individuals and their families.

What are the goals of the study?

In the TIGER research study, we are learning more about individuals with genetic events associated with autism spectrum disorder (ASD), intellectual disability (ID), and/or developmental delay (DD). We hope to better understand and describe how different gene changes influence the development, behavior, and experiences of children and adults. Individuals with these genetic changes may have neurodevelopmental differences that we would like to better understand.

What will happen during the visit or online?

Eligible families participate in a consent phone call, and are then invited to complete a series of video- or phone calls to assess for autism-associated features, adaptive skills, cognitive skills, and medical history. Caregivers are also invited to complete a variety of online questionnaires, including measures of adaptive behavior, treatment history, sleep habits, gastrointestinal symptoms, social-emotional functioning, and executive function. Biospecimen (blood or saliva) collection is completed remotely. Finally, families are offered a feedback session with a clinician and a written report of standardized measures and recommendations.

How will this help families?

Families will be compensated $100 for their participation. Participants may receive feedback about their family’s genetic event(s). Families will also receive written and/or verbal feedback regarding adaptive behavior, social communication skills, language skills, and cognitive skills as available from completed study activities.

There is a need for detailed and reliable information on the prevalence of alcohol and drug use among adolescents and young adults with ASD. This study will produce important new knowledge about this, as well as verify or refute risk and protective factors of alcohol and drug use within this population. Study findings will help inform identification and prevention/intervention work.

What are the goals of the study?

The goal of this study is to learn more about the development and experiences of adolescents and young adults (age 12-24) who have been diagnosed with autism spectrum disorder as they navigate from adolescence to early adulthood. We are especially interested in their exposure to alcohol and other drugs.

What will happen during the visit or online?

Participation involves 4 visits over 3 years and consists of short interviews and questionnaires. Visits can be done in-person or remotely. Each visit is one year apart. There is also a parent/guardian component for parents/guardians of eligible youth.

How will this help families?

Findings from this study will help researchers learn more about what helps and hinders development in persons who have been considered to be on the spectrum. This will help inform future research and assist in the identification, prevention and intervention work associated with alcohol and drug use disorders.

This study is important as it aims to better understand the impact of anxiety for adolescent ASD females, who are currently understudied and often experience diagnostic delays. Additionally, it examines the intersectionality of ASD, sex and gender and its impact on anxiety during this pivotal period of development.

What are the goals of the study?

This study aims to better understand the interplay between sex, gender and ASD. Specifically, it will examine the experiences of ASD females with a focus on the presence and impact of anxiety in adolescence. ASD females are at elevated risk, especially during the transitional period of adolescence where ASD youth report increased rates of bullying and rejection, potentially contributing to co-occurring conditions such as depression, anxiety and suicidality.

What will happen during the visit or online?

Participants will complete diagnostic assessments, self-report tools, social and non-social stress tests and optional eye tracking paradigms. During the assessment, heart rate data will be collected with Actiheart Heart Rate and Activity Data Loggers. Caregivers will complete measures of ASD symptomatology, gender-role development, pubertal status and anxiety.

How will this help families?

This study aims to help families affected by autism, particularly female adolescents, with a goal to better characterize bio-behavioral markers of anxiety in ASD females. Adolescents with ASD have been reported to experience higher levels of bullying and rejection from peers which can lead to increased rates of depression, anxiety and suicidality. ASD females are particularly vulnerable to anxiety and therefore increased research is needed to better understand their experiences and the role of biological sex, gender and symptomatology in predicting anxiety.

Researchers at Deakin University are seeking participants for an online study investigating how and why personality traits, characteristics, and behaviours associated with autism and anorexia are related.

What are the goals of the study?

We are doing this research because there is evidence that autism and anorexia might overlap, and we want to understand this overlap better. Better understanding of factors that contribute to the overlap between autism and anorexia will help us to better detect these conditions and offer appropriate support to those who require it.

What will happen during the visit or online?

If you choose to participate in this study, you will be invited to complete an online survey and computerised tasks. The study will take approximately 1 hour to complete, and upon completion, participants will go into the draw to win one of 10 AUD$150 gift cards.

How will this help families?

Improving understanding of these disorders will help us identify appropriate support for individuals with autism and improve clinical practice.

Autistic individuals experience depression differently, and at a higher rate, than typically-developing individuals, yet there is no measure that specifically measures depression in autistic populations. As such, we have created a new measure to look at depressive symptomatology as seen in autistic populations. Our study will provide us with a more complete understanding of autistic youth’s mental health, while also providing professionals with a more accurate understanding of how to tailor treatments for depressive symptoms in autistic individuals.

What are the goals of the study?

In our study, we are investigating the overlapping symptoms between depression and autism. The goal of this project is to learn more about depressive symptoms that autistic adolescents may show. We are also hoping to gain a better understanding of whether parents attribute such symptoms to their child’s primary diagnosis of ASD, or to depression, or to something else such as puberty or stress.

What will happen during the visit or online?

Adolescents will be asked to complete a questionnaire about their feelings over the last two weeks. This will take approximately 30 minutes. Parents will also fill out a questionnaire about their child’s feelings, behaviours, and emotions over the two weeks. Then, parents will be asked to complete another questionnaire about their child’s behaviours and emotions over the past 6 months. Together, this should take approximately an hour and a half and will be completed over Zoom. Parents will receive a $20 Amazon gift card and adolescents will receive a $10 Amazon gift card for participating.

How will this help families?

Co-occurring conditions such as depression in autistic individuals can increase stress on both the individual and their family. Our study will provide us with a more accurate understanding of the rate of depression in autism, how depression affects autistic individuals and their families, and how to care for families that are experiencing depression in autism. As such, we can begin to lessen the stress and other impacts that depression can have on autism, and improve the lives of autistic individuals and their families.

Through this study, the SENSE Lab hopes to learn more about the unique and challenging process of puberty in females with ASD and provide information to families and caretakers in order to make the transition from childhood to adulthood easier. This study aims to understand and track puberty in females with and without ASD so clinicians are able to provide meaningful approaches and interventions in the future during this critical time period.

What are the goals of the study?

The mission of the SENSE (Social Emotional NeuroScience Endocrinology) Lab is to better understand the social and emotional functioning of youth autism and to translate findings into meaningful approaches and interventions. Significant physical, psychological, hormonal and social changes occur during pubertal development. Adolescence may be uniquely challenging for girls especially those with autism spectrum disorder (ASD). The goal of our study of girls with autism or typical development is to promote, understand, build, enrich, respect, and track youth.

What will happen during the visit or online?

Participants will come to Vanderbilt University Medical Center once a year for four years. Each visit includes a physical exam, blood draw, brief psychological exam, brief social interaction, and EEG. Participants will be expected to take saliva samples at home prior to study visits and complete menstrual tracking surveys.

How will this help families?

This study will help provide vital information regarding puberty in females with ASD and help families further understand the unique timing and tempo of puberty in autistic females. In addition to study compensation, families will receive annual research letters of standardized measure results and an annual symposia on topics related to pubertal development and ASD will be provided for families. We aim to be available to families for questions and concerns relevant to the focus of the study; namely, adolescence, puberty, and mental health. If developmental needs arise, our multidisciplinary team will do our best to provide support.

This study will help us learn more about early signs of emotional and behavioral challenges that many siblings of children with autism start to have by age 3. Findings from this study may help us identify and treat these challenges earlier in life. As part of the study, your child will receive multiple diagnostic evaluations from expert clinicians at the Yale Child Study Center.

What are the goals of the study?

We are recruiting infants for a study of emotional development. The study is looking at emotions in siblings of children with autism from 4-30 months of age. The goal is to learn more about early signs of behavioral and emotional challenges that may develop when children are 2-3 years old.

What will happen during the visit or online?

You and your baby will come to the lab for 5 study visits over 2.5 years. Each visit will last a few hours. During the visits, your baby will participate in clinical assessments, watch videos, and complete play-based tasks. You will fill out surveys and participate in interviews about your baby, yourself, and your family. All visits will take place in New Haven, Connecticut. Free and secure parking is provided. Families will receive up to $250 for being in the study.

How will this help families?

This study will help us learn more about early signs of emotional and behavioral challenges that many siblings of children with autism start to have by age 3. Findings from this study may help us identify and treat these challenges earlier in life. As part of the study, your child will receive multiple diagnostic evaluations from expert clinicians at the Yale Child Study Center.