Children Learning Language Collaboration Project

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.

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.

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.

What are the goals of the study?

We are interested to explore how both neurotypical and autistic adolescents and adults initially perceive people in conversations. To explore whether perceptions of the adolescent in the video are different depending on a participants age or diagnosis. Furthermore, the second part of the survey will state if the adolescents in the video has autism or not, we would like to discover whether this will alter participants initial perception and or judgement of the conversation.

What will happen during the visit or online?

Participants will watch videos (without sound) of an adolescent having a conversation with two people you can’t see in the video, then state their initial perceptions of the adolescent using slider bar questions.

How will this help families?

Could provide insight for families into how their autistic adolescents may perceive social situations, how they interpret other peoples conversations. Similarly if Adults with autism participate the research highlights how communication is expressed differently, promoting a non judgmental mindset or potentially a deeper understanding of how people can be perceived no matter the social situation.

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.