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.

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.

We want to understand autistic adults’ experiences with communicating without words because because individuals with autism tend to have difficulties using nonverbal communication. We want to be able to help the autism community with communication skills if that is something the study indicates is important to them, and help create interventions targeting nonverbal communication if the autism community indicates a desire for it. This study began at the University of the Sciences in Philadelphia by Dr. Ashley de Marchena and a team of students as part of the InterAction Lab and is now being continued at Drexel University’s A.J. Drexel Autism Institute.

What are the goals of the study?

We are interested in developing supports to help improve communication experiences for adults on the autism spectrum, but first want to hear from the autistic community about what (if any) supports are wanted or needed.

What will happen during the visit or online?

Participants will be asked to complete about 60 minutes of online surveys related to communication, autism traits, and general information about themselves. The surveys should take about an hour to complete. Communication differences will be accommodated.
Participants will receive a $40 Amazon gift code after you complete the study.

How will this help families?

The results of the survey will be used to develop supports for both autistic and non-autistic people to facilitate stronger, more comfortable interactions.

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.

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.

Interested parents should know that we would like them to have the opportunity to share their story of being a parent to an autistic child. The five-minute Zoom interview is a quick interview to give parents the chance to share their experiences and participate in research. We are enrolling families with autism and other disabilities in the study.

What are the goals of the study?

The study goals are to learn about parents and families of children with autism and other disabilities to better understand their experiences as parents and caregivers and to understand the relationships they have with their children.

What will happen during the visit or online?

Parents will complete an online consent form, questionnaire, and five-minute Zoom interview.

How will this help families?

The research may ultimately lead to a better understanding of how to help families affected by autism and other disabilities to thrive and cope as parents and caregivers.

What are the goals of the study?

We are carrying out an interview research study in the US and Canada which will involve interviews with autistic adolescents and supporters of autistic children and adolescents.
The aim of the study is to understand everyday life with autism and to understand the most important characteristics and impacts of autism that should be measured in future clinical studies. We will use this information to develop a new questionnaire and a personalised goal setting approach in order to measure what matters to autistic people.

What will happen during the visit or online?

● Speak to a researcher during two one-to-one interviews, which should last around 60-75 minutes each
● Talk about the experience/their child’s experience of living with autism
● Give honest feedback about some questionnaires
● In appreciation of your time, you will be reimbursed after each interview (two interviews in total).

How will this help families?

There is no direct medical benefit from being in this study. The information learnt from this study may help researchers and doctors learn more about autism in general. Your child and others with autism may benefit from the results of such research in the future, as we seek to develop a new questionnaire and a personalised goal setting approach in order to measure what matters to autistic people.

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.

The goal of this study is to understand how autistic adolescents feel about common intervention goals and strategies used to support autistic children and young people. Autistic people have not historically been a part of the development of these interventions and autistic advocates have voiced concerns saying that these interventions are unethical and caused harm to autistic people. It is important to seek autistic feedback to determine where these practices fail to align with the values of autistic people and where they can be improved.

What are the goals of the study?

A primary goal of the study is to understand how sensory processing develops over adolescence. We hope to identify neurobiological mechanisms related to sensory over-responsiveness (SOR) with the goal of informing the development of targeted interventions.

What will happen during the visit or online?

The researcher will set up a time to meet with the teen (participant) and their parent via zoom or in person, depending on location and preference. During the meeting, the parent and participant will participate in a consent/assent process. Once both parties consent/assent to participate, the teen will be sent the survey link and answer the survey items. If preferred, they can have the survey items read to them and the researcher can fill out the survey based on their dictated answers. The survey will take approximately 30-45 minutes.

How will this help families?

There are no direct benefits to participants or families. However, we hope that the findings from this study will help clinicians provide supports to autistic children and young people that are more in-line with what the autistic community desires.