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.
Researchers at the AJ Drexel Autism Institute are developing a new screening tool to identify young children on the autism spectrum who might have been missed by toddler-age screening. We are inviting parents and educators of children ages 4-8 to participate.
What are the goals of the study?
We are creating a new screener for elementary-school children whose autism might still be diagnosed. This study is to test how well that screener is working, with children who have already been diagnosed with autism. We are seeking both parents AND EDUCATORS of children ages 4-8.
What will happen during the visit or online?
Participants will complete an online screening questionnaire (5 minutes). If they are eligible, someone from our research team will reach out to share the full study. The full study is a series of online questionnaires (45-60 minutes). Those who complete the full study will be compensated with $50.
How will this help families?
Many autistic children enter elementary school without their diagnosis being identified. This means that they do not get access to services and supports to which they would otherwise be legally entitled. The current project seeks to develop and implement new strategies for identifying children who may have been missed.
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.
Emotion dysregulation (ED) in autism spectrum disorder (ASD) exacerbates social impairment, increases risk for psychiatric and behavioral problems, and often leads to polypharmacy, crisis interventions, and high rates of suicidality. Effective treatment of ED could greatly reduce morbidity and costs and significantly improve quality of life for individuals with ASD. The Emotion Dysregulation Inventory (EDI) is a caregiver report for children ages 6-17 years old that measures rapidly escalating, intense, and poorly regulated negative emotion and dysphoria. However, there are no existing self-report measures of ED validated in adolescents and adults with ASD. Currently, best practice for assessment of emotional and behavioral constructs in ASD is the use of multiple reporters, but this approach is more challenging for adults with ASD when a parent is no longer available or as involved in daily life. Although adults are the fastest growing segment of the ASD population, there has been limited treatment research focused on adults. The EDI-SR would be the first self-report of ED in ASD. It will be developed through a systematic item refinement process to ensure validity, thereby generating a new opportunity to incorporate patient-reported experiences and outcomes in an overlooked and growing group of adults with ASD. The availability of validated self-report of ED is particularly crucial to address gaps in evidence-based treatment for adults with ASD. Dr. Carla A. Mazefsky at the University of Pittsburgh is conducting this research study.
What are the goals of the study?
With this project, we aim to develop and validate a change-sensitive self-report measure of ED for adolescents and adults with ASD, called the Emotion Dysregulation Inventory-Self-Report (EDI-SR).
What will happen during the visit or online?
This study will occur entirely online and will take less than an hour for participants to complete. Participants will be able to pause and resume the questionnaires at any point. They will be paid $75 for completion of surveys. There are no travel requirements. Overall, it is low burden study. Participants may be invited back 4 weeks later for a single survey re-test for an additional $10.
How will this help families?
Although adults are the fastest growing segment of the ASD population, there has been limited treatment research focused on adults. Support for ED is a major unaddressed need for adults with ASD. Studies consistently identify ED as one of the top barriers in college, and adults with ASD and their parents identify mental health as a top priority for research. Therefore, the availability of validated self-report of ED is particularly crucial to address gaps in evidence-based treatment for adults with ASD.
The goal of this project is to establish how our current professional understanding of autism matches with and/or clashes with social media depictions of autism, so that (1) clinicians understand how online experiences might impact their patients’ conceptions about autism, and perhaps themselves, and so that (2) consumers of social media have guidance as they seek information. The study team is made up of Seaver Autism Center researchers, and we decided to put together this project after hearing from our participants and seeing for ourselves the wide range of autism-related content on TikTok.
What are the goals of the study?
We are looking into how people feel about current social media perceptions of Autism. Everyone’s feeds are different and everyone’s relationship with ASD is different, so we want to gather information from people with different perspectives and report back so everyone can enjoy their feeds with a little more big-picture understanding of the strengths and dangers of this content. We also want to have autism professionals weigh in on autism symptoms mentioned in top-performing videos, so the general public can have some guidance on what symptoms are more or less related to autism.
What will happen during the visit or online?
You will fill out an anonymous survey that will take anywhere between 2 and 10 minutes.
How will this help families?
Representation is so important. With over a billion users worldwide, TikTok has a tremendous impact on the way outsiders and people in the autism community are thinking about autism. The study team hopes that this study can provide more context and guidance for content consumers.
We are conducting a study to better understand autistic girls and how/why autism characteristics are masked in high school. If you are the mother of a high school autistic female in inclusion for at least 80% of the school day, we would love to hear the perspectives of both you and your daughter via a virtual interview and questionnaire! Compensation is available for qualified participants.
What are the goals of the study?
The goal of this study is to investigate high school aged autistic females who try and “mask” their autistic characteristics as they navigate through everyday high-school life.
What will happen during the visit or online?
An online questionnaire and a zoom interview.
How will this help families?
This study will help empower autistic females as the navigate their high school years.
This research study aims to find out more about adults with autism spectrum disorder, including how adults with autism think, how their brains work, and how these things change as they get older.
What are the goals of the study?
The main goal of the study is to understand the aging process in people with autism.
What will happen during the visit or online?
The study involves autism diagnostic evaluation at the SDSU Center for Autism, and a neuropsychological battery testing the individual’s memory, attention span, and other cognitive skills. Participants are also asked to undergo an MRI scan at the SDSU Imaging Center, which allows us to collect information about the brain anatomy and function. Because we are aiming to understand how people with autism age, we hope to repeat this evaluation in about 3-5 years, inviting participants to return for another scan and a set of assessments.
How will this help families?
Participants in this study report that they learn important information about their memory and other cognitive abilities from participating in the study. Broadly, the results of this study should help us understand how people with autism age – something that has not been studied nor well understood thus far.
In this study, we will present a series of validated eye tracking paradigms (e.g., images of faces, videos of social interactions) while we monitor eye movements and physiological arousal. Two research assistants will also collect behavioral reports of ASD and ADHD symptoms from 8-12 years old participants. These data will allow us to examine how and if eye movements, arousal, and questionnaire outcomes differ between children with ASD and ADHD. By combining eye tracking/arousal measures and behavioral assessments, we will then draft a map of how these social cognitive traits manifest in eye movements.
What are the goals of the study?
The primary aim of this study is to test the utility of a social cognitive battery incorporating psychophysiological measures to differentiate between autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD).
What will happen during the visit or online?
A brief telephone screening will be conducted to determine if the child and family are interested in the study. Then, a research team member will schedule a time for the family to come into the lab for approximately 90 minutes. Prior to the visit, parents will be asked to send a copy of a recent diagnostic assessment to confirm diagnosis. During the visit, the participant will come to our lab with their parent. Upon completion of the consent and assent, cognitive screener will be conducted first to the child and then the eye tracking tasks will be administered using the Eyelink 1000. We will ask the child to sit in front of a computer screen, and we will be showing the child some videos and images while the computer will track the child’s physiological response and their eye movements. Parent and caregivers will complete a few questionnaires by the time. Upon completion of all measures, the participant will be given a $20 gift card for their time.
How will this help families?
Families will receive a feedback summary compiling information regarding their responses on questionnaires, including the Conners, SRS, and CBCL. Families will learn about their children’s current condition in behavior performances and cognitive development. If requested by contacting the lab via phone or email (or indicating during the study visit), a 15 minute phone feedback session will be scheduled for the parents with the PI, clinical psychologist, to discuss the results from the questionnaires. This will also offer the PI a chance to address any other questions the parents may have. Participants will also be compensated $20 for their time.
This is a research study to learn more about how children learn to understand language, and the role that caregivers play in this process. By learning more about these processes, we may be able to contribute to a better understanding of language development and impairment and the design of more effective intervention programs and therapies to support language learning. This study will be conducted by Dr. Sudha Arunachalam of the Communicative Sciences and Disorders department at the Steinhardt School of Culture, Education, and Human Development, New York University, and Dr. Rhiannon Luyster of the Communicative Sciences and Disorders department at Emerson College.
What are the goals of the study?
Learn more about how children learn to understand language, and the role that caregivers play in this process.
What will happen during the visit or online?
If you give permission for your child to participate in this study, your child will be asked to play some games with us in the lab at 665 Broadway in Manhattan, and have a play session at home over web camera on your computer or tablet via Zoom videoconferencing software. You will be with your child the entire time. The in-person study is schedule for 1.5 hours, and the Zoom conferencing part of the study will take approximately 30-45 minutes of you and your child’s time.
The study also involves online surveys that can be completed by you from any location on a desktop, laptop, or tablet computer. These surveys will focus on your child’s demographics, daily activities, and language use, and will take up to 30 minutes to complete.
How will this help families?
We may be able to contribute to a better understanding of language development and impairment and the design of more effective intervention programs and therapies to support language learning.
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.
This pediatric autism clinical research study is currently testing the drug, pimavanserin, to see if it is safe and effective in treating irritability and other behaviors in children and adolescents with autism spectrum disorder (ASD). Study participation will last for up to 14 weeks, with a 6-week treatment period. Children who enroll in this study will receive either the study drug or placebo. A placebo looks like the study drug but has no impact on the person taking it. There will be no cost for the study drug or any study-related procedures. You may be compensated for your time and travel. If your child completes the 6-week treatment period, they may be able to enroll in a 52-week, open-label extension study if they qualify. During this open-label study, there is no placebo. Children who enroll will receive the study drug, pimavanserin.
What are the goals of the study?
The overall goal of this study is to evaluate whether an investigational drug might help relieve irritable behaviors associated with Pediatric Autism Spectrum Disorder that make social interactions and everyday functioning challenging.
What will happen during the visit or online?
Study participation will last for up to 14 weeks, with a 6-week treatment period. Children who enroll in this study will receive either the study drug or placebo. A placebo looks like the study drug but has no impact on the person taking it. There will be no cost for the study drug or any study-related procedures. You may be compensated for your time and travel.
If your child completes the 6-week treatment period, they may be able to enroll in a 52-week, open-label extension study if they qualify. During this open-label study, there is no placebo. Children who enroll will receive the study drug, pimavanserin.
How will this help families?
The evaluation of this investigational drug may help relieve irritable behaviors associated with Pediatric Autism Spectrum Disorder that make social interactions and everyday functioning challenging.
