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.
A nursing PhD student at Vanderbilt University is looking for mothers of children with Autism Spectrum Disorder to share their experiences they had in feeding their child at the ages of 0-12 months. Feeding difficulties have been identified in older children with autism but few studies have looked at the feeding difficulties children with autism have before the age of 2 years old. Identifying infant feeding difficulties in autism may help with surveillance for earlier diagnosis and to better support mothers who are experiencing difficulties feeding their infant.
What are the goals of the study?
The purpose of this study is to investigate the feeding difficulties of infants who are later diagnosed with autism compared to their neurotypical sibling to identify any feeding characteristics that would warrant increased monitoring for autism in infancy.
What will happen during the visit or online?
One 30-45 minute online interview with a follow-up phone call or email if any additional information or clarification is needed regarding the information obtained in the interview. Participants will receive a $25 gift card for their time.
How will this help families?
This study may help inform better ways primary care providers (PCPs) ask questions at well child visits to identify infants that are experiencing feeding difficulties, improve PCP surveillance for neurodevelopmental delays in infants by assessing feeding, and improve PCP support for mothers experiencing difficulty feeding their infants.
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.
This study, conducted by researchers at the University of Washington, aims to redesign and pilot test an evidence-based family intervention (RUBI) for autism and behaviors that interfere with quality of life and self-determination in partnership with autistic adults, their caregivers, and their providers to ensure that the redesigned intervention is appropriate and effective for this community. We believe this study is important because autistic adults and their families are currently the most underserved population of autistic individuals. Additionally, the Autistic Self Advocacy Network recently called for increased work to help autistic adults with challenging behaviors and their supporters. We hope that this study can help make progress toward meeting this need for the autistic community.
What are the goals of the study?
In partnership with autistic individuals, their caregivers, and their providers, we hope to redesign an intervention for families of adults with autism and behaviors that interfere with their quality of life. We also hope to test the redesign intervention with ten families to ensure the redesigned intervention is feasible and appropriate for families.
What will happen during the visit or online?
There are two phases to this study:
For Phase 1, we are looking to recruit autistic adults, caregivers of autistic adults, and providers who service autistic adults. Focus group members will be asked to review materials about an established intervention for families of autistic children and answer questions in a 2 hour focus group regarding the applicability of the intervention for adults and suggestions for improving fit with families of autistic adults. Participants in Phase 1 will also be asked to fill out short surveys about the intervention during the focus groups. Participants will be compensated $100 for participating in focus groups.
For Phase 2, we are looking to recruit autistic adults and their caregivers to pilot the redesigned intervention. Families will be asked to attend 8-10 weeks of intervention (1 hour/week) at a time that is convenient for them. They will also be asked to fill out surveys about themselves and the intervention 4 times throughout the intervention. Participants will each be compensated $25 for each set of surveys.
How will this help families?
Currently, autistic adults and their families report having an extremely hard time accessing services. We hope that by redesigning a short term, evidence-based intervention for autistic adults with behaviors that interfere with their quality of life and their families, we can help expand access to this service and give autistic adults and their families tools to improve self-determination and quality of life.
We are the Psychology of Language Lab at Princeton University, and we are studying how autistic children learn language. We will send families videos of picture books being read aloud, and will study whether different types of picture books can help autistic children learn new words. Families who participate in the study can earn up to $163.
What are the goals of the study?
The goal of this study is to learn more about why some autistic children have difficulty learning language, and to test a teaching method we think may help children learn new words more easily.
What will happen during the visit or online?
If you choose to participate in this study, we will send your family eight short videos of picture books being read aloud. We will also meet with you and your child on Zoom at the beginning and end of the study, during which we will show your child some pictures of objects and ask them to find objects that match. Finally, we will send you a questionnaire to fill out at the beginning and end of the study, and follow up with you three months after the end of the study to see how much your answers change.
How will this help families?
This study will help researchers develop new methods of teaching language to autistic children.
The purpose of the current study is to investigate whether adults with a diagnosis of autism tend to display more notable deficits in certain areas of competency measurement than others as measured by their performance on the MacArthur Competence Assessment Tool-Criminal Adjudication (MacCAT-CA) and the Judgment In Legal Contexts (JILC) Instrument, as well as look at the impact that theory of mind (as measured by the A-ToM [Adult-Theory of Mind] instrument) and measured intelligence (derived from previous IQ testing) may have on competence-related abilities. A trained doctoral student will facilitate study session procedures via Zoom. This study seeks to contribute to the scarce research on the unique effects of autism on competence-related abilities.
What are the goals of the study?
The researcher will explore whether this population displays a notable pattern in scores on the various facets of competency to stand trial. Deficits in theory of mind will be explored in terms of their relation to performance on competency measures. This information will collectively help inform the relationship between autism and competency to stand trial and perhaps be used to inform improved competency evaluations and procedures for this population in the future.
What will happen during the visit or online?
Results of previous IQ testing will be requested directly from the participant (no contact with their medical providers). If the participant is unable/unwilling to obtain and share this information with the researcher, the abbreviated version of the WASI-II will be administered to obtain an estimate of their IQ. On Zoom, participants will be administered the A-ToM, MacCAT-CA, and JILC. The A-ToM requires participants to view a series of videos and provide verbal responses to a series of prompts. The MacCAT-CA and JILC are both interview-style measures.
How will this help families?
The information collected in this study will help inform the relationship between autism and competency to stand trial and perhaps be used to inform improved competency evaluations and procedures for this population in the future.
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.
Six-to-ten year old children with autism spectrum disorders are invited to participate in a fun study, which involves wearing an actigraphy watch for two weeks (to estimate the quality and other characteristics of the child’s sleep) and participation in one MRI session at SDSU Imaging Center. Both children and parents are asked to keep sleep diaries for the two weeks when the child is wearing the actigraphy watch. Finally, children are asked to take part in a brief cognitive testing session. The study aims to understand the links between sleep (problems) and brain development in children with autism.
What are the goals of the study?
This study aims to understand potential mechanisms underlying sleep disturbances in autism.
What will happen during the visit or online?
Children will be asked to wear an actigraphy watch for two weeks, keep sleep diaries, take part in one MRI scan, and complete a brief behavioral assessment session.
How will this help families?
Sleep problems affect 50-80% of individuals with autism and can have cascading effects on development, everyday function, and quality of life. However, the mechanisms underlying sleep disturbances in ASD are not understood. A better insight into the potential mechanisms of sleep disturbances in autism may ultimately help with developing new treatments targeting sleep in children with autism.
The purpose of this study is to identify relationships between social identity (including LGBT identity), social camouflaging (“masking”), and well-being in autistic adults. It is well documented that masking behavior is associated with poor mental health outcomes for autistic adults, but little to no research has addressed the effects of masking on autistic adults who are members of other marginalized groups.
What are the goals of the study?
This study seeks to address whether the similar roles of masking among autistic and queer individuals result in trends in masking behavior for the large segment of the autistic adult population that identifies as LGBT.
What will happen during the visit or online?
The study consists of a 20-minute Qualtrics survey that asks demographic questions and uses several validated measures to determine respondents’ social identities, levels of masking across those identities (specifically autistic identity, sexuality, and gender), and recent depressive symptoms.
How will this help families?
The relationship between masking and well-being is increasingly well documented in academic literature on autism. This study will lay the groundwork for future research on how masking influence well-being in multiply marginalized autistic individuals.
