Development of the M-CHAT-S, a school-age extension of the Modified Checklist for Autism in Toddlers

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.

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.

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.

The purpose of this study is to understand the healthcare experiences of both non-autistic and autistic adults as well as their related needs. Participants that support adult family members at healthcare appointments will have the option to answer additional questions.

What are the goals of the study?

To improve education to reduce healthcare disparity and to offer guidance on universal design as well as accessibility.

What will happen during the visit or online?

Take an online survey

How will this help families?

Improve education for healthcare professionals and office workers

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 study is being conducted by Dr. Lee Mason and Alexis Bolds of Cook Children’s Health Care System and Texas Christian University’s Burnett School of Medicine in Fort Worth, Texas. Our research is designed to assess your child’s language development over the course of two years. Every six months we will ask you and your child to take part in a telehealth-based functional language assessment that will last approximately one hour. At the completion of this project, we will compare the different language profiles of all participants.

What are the goals of the study?

We are asking you to take part in this research because your child’s language skills are still developing, and we are trying to learn more about how functional language develops over time. The purpose of this research is to determine whether we can accurately conduct language assessments via telehealth, and to better understand the differences in language development between children with and without autism spectrum disorder.

What will happen during the visit or online?

A language assessment called a “verbal operant experimental (VOX) analysis” will be conducted every six months as part of this research. The VOX is a functional analysis of language that has been carefully designed to assess four language domains: conversing, labeling, echoing, and requesting. Across each of these conditions, we will assess your child’s ability to say the same words. Caregivers will also be asked to complete a brief demographic survey at the time of each assessment to identify potential factors that may be related to language development. We expect each assessment to take approximately 45-60 minutes of your time.

How will this help families?

After each VOX analysis, you will receive an assessment report that describes strengths and weaknesses of your functional language skills. The report provides recommendations for helping to remediate any deficit areas identified by the assessment.

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.

The Wall Lab has already conducted feasibility testing to show that GuessWhat has the potential to impact outcomes on standard behavioral measures. This low-commitment option is a prosocial game, where instead of drawing the player into an immersive game experience, the child actively engages with their social partner in order to perform well in the game. We hope our study testing this game, which leverages machine learning and science-backed treatment approaches, will be an engaging and rewarding experience for families, and that it will provide evidence for therapeutic impact.

What are the goals of the study?

The following study aims to understand the efficacy of the mobile game platform, GuessWhat, in delivering behavioral therapy to children with Autism Spectrum Disorder (ASD).

What will happen during the visit or online?

If you participate, you will be asked to complete a set of questionnaires that take approximately 1 hour to complete before and 4 weeks after being enrolled in the study. These questionnaires will ask about basic demographics, about your experience as a parents, and about your child’s social communication skills. 50% of participants will be randomly assigned to the treatment group, these participants will use a mobile app for 4 weeks after enrolling. 50% of participants will be in the control group, these participants will continue their normal routine for 4 weeks, before being asked to complete the second set of questionnaires.

How will this help families?

We hope the study game itself will be a fun game for families to play that encourages social communication. We are conducting this study to see if our game-based digital therapeutic can be an effective early intervention option for children with ASD. Results from this study will further understanding with regard to designing digital therapeutics for children with special needs.

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.

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.

What are the goals of the study?

We are currently working on a project that aims to better understand how autistic people are influenced by sensory information (sights, sounds, etc.) while walking. In our current study, we are asking people to walk on a mat while they wear a virtual reality headset where they look at a sidewalk that is empty or a sidewalk that is in a busy area (pedestrians, billboards, etc.). While wearing the headset they will also hear sounds that correspond to these sidewalk situations (either silence or the types of noises you would expect if you were walking down a busy sidewalk). While they are walking, we record the pressure their feet exert on the mat and we compare these pressure patterns across the different conditions (busy and empty sidewalk, loud and quiet noise), to study whether different amounts of sensory information influence walking patterns.

What will happen during the visit or online?

Participants will be asked to fill out questionnaires, solve puzzles, and walk on a sensored mat while wearing virtual reality goggles.

How will this help families?

The study will help us to inform the development of environments that are more accessible for people with autism.