SMASS

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.

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.

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.

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.

Sensory-based interventions are commonly prescribed by occupational therapists in the treatment of children with autism spectrum disorder and related neurodevelopmental disorders. However, while there is emerging evidence for Ayres Sensory Integration therapy in individuals with IQs above 65, many studies evaluating the efficacy of various sensory-based interventions have demonstrated low or insufficient strength of evidence. This study aims to pinpoint interventions that might be promising candidates for targeted trials based on prevalence and perceived efficacy in a large community sample.

What are the goals of the study?

The purpose of this research study is to identify the sensory interventions and strategies that caregivers consider the most effective at treating or managing their child’s sensory reactivity symptoms.

What will happen during the visit or online?

If you agree to take part in this research, you will be asked to complete a 5-10 minute anonymous survey, which will ask you to identify your child’s sensory preferences and your satisfaction with the sensory interventions you use currently or have tried in the past.

How will this help families?

By participating in this study, caregivers of children with autism can share their experiences with the sensory interventions that have worked best for their child. The goal of this project is to use these responses to drive future research to improve the efficacy and accessibility of these strategies.

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.

When you participate, your experiences help the medical community to understand your rare genetic disorder faster. We track health and development over time to help answer questions about the future of people with these rare disorders, and make it easy to connect you to researchers who want to include you or your child in research studies and clinical trials. Your unique experience could hold the clues that scientists need to find answers for you and others with rare genetic disorders.

What are the goals of the study?

Simons Searchlight is an international research program with the goal of accelerating science and improving lives for people with rare genetic neurodevelopmental disorders. We study over 150 genes that cause rare neurodevelopmental disorders, and our list is always expanding. You or your family member must have a genetic diagnosis of one of these conditions in order to join. The study is international, and families can participate in several languages. You can find our gene list and list of languages at SimonsSearchlight.org.

What will happen during the visit or online?

Simons Searchlight collects family, medical, developmental and behavioral information through online surveys and phone interviews with families and individuals. Optional blood collection is performed either remotely or at in-person patient organization conferences. Upload your clinical genetic results report, complete initial online surveys, provide our genetic counselors medical history information over the phone, provide an optional blood draw, and update us every year.

How will this help families?

Joining such a community enables families to find and engage with others with the same genetic condition, as well as providing opportunities to connect with researchers and participate in studies aimed at bettering our understanding of these disorders and, in some cases, clinical trials to advance supports and treatments.