Language Use in Autism

What are the goals of the study?

A short, online survey about words and phrases used when talking about autism. Our aim is to inform how communities may best and most supportively discuss autism.

What will happen during the visit or online?

You will be asked to rate a list of words/phrases commonly associated with autism based on how harmful/pathologizing vs affirming/helpful you believe they are.

How will this help families?

Study findings will be used to make recommendations about language that is most preferred and affirming when talking about autism. Following these recommendations will allow individuals on the spectrum and their families to receive care that aligns with the values of the autism community and inform training and education efforts.

In less than 45 minutes, participants can help us understand the greater extent of mental abilities seen in autism and help dispel harmful per-conceived notions of the autistic mind.

What are the goals of the study?

This study aims to understand how people mentally represent others on a more nuanced level.

What will happen during the visit or online?

Participants will read short (4-sentence) stories and make True/False responses about the people in them. Then participants will read statements and judge how pragmatically sound they are for communication.

How will this help families?

Improving our understanding of the social brain can inform the way families affected by autism understand and interact with their loved ones. Allow them to enjoy an improved quality of life, based on an understanding of autism gained through scientific insights.

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.

This study could help dispel dated and harmful notions about the limits of the autistic mind. We aim to understand certain forms of social cognition on a more nuanced level to explore the greater extent of autistic abilities beyond what has been previously assumed.

What are the goals of the study?

To understand complex social cognitive processes and their instantiation in neuro-divergent individuals.

What will happen during the visit or online?

Online Study: Participation usually takes less than 1 hour and entails reading short (4 sentence) stories and quickly answering True/False prompts. Then making judgements about the linguistic “strangeness” of statements made about agents in stories.

How will this help families?

The results of this study will provide new insight on the nature of certain cognitive processes. Equipped with this new knowledge, families of individuals affected by autism can better understand and interact with this population such that one’s quality of life may be improved.

Individuals with autism can have reduced awareness of what strengths they possess. This can associated with lower self-esteem, mood disorders, and negative repetitive thinking about one’s self. This study is looking to explore strength awareness in adolescents with autism, in hopes to investigate the effects of improving strength awareness

What are the goals of the study?

We are looking to evaluate how young adults identify and express their own personal identities.

What will happen during the visit or online?

Fill out surveys via a secure research platform asking about experiences, mood, and how one describes oneself (roughly one hour, can be completed over separate sessions) 2. Parent or legal guardian will fill out surveys about their child (roughly one hour).

How will this help families?

Decreased strength awareness can be problematic for children as they transition into adulthood. It can cause reduced ability to advocate for oneself in relationships, school settings, and during employment. This study is evaluating strength awareness in adolescents with autism to further research the effects of decreased and increased strength awareness.

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.

While siblings of individuals with ASD are at greater risk for ASD and other developmental disorders themselves, very little is known about how autism affects the children of these siblings (the “next generation”). This project is aimed at laying the groundwork to better understand how autism affects the next generation. This study will focus on establishing the infrastructure to examine the next generation of families affected by ASD by engaging adult siblings and their spouses/partners in focus groups; this feasibility study will pave the way for a phenotyping study of the next generation to examine the early signs and symptoms among the second-degree nieces and nephews of individuals with ASD.

What are the goals of the study?

To gather input on how having a sibling with ASD affects your family planning decisions and your perspective on participating in research.

What will happen during the visit or online?

If eligible, you will be invited to participate in a 2-hour focus group via Zoom alongside other siblings (and spouses/partners of siblings) of individuals with ASD to provide insight into your experiences, your current feelings surrounding family planning decisions, and your willingness to participate in future research. You will be compensated for your time and input.

How will this help families?

Participation in this study will help to establish a research protocol that can assist other siblings of individuals with ASD. Participation will also assist researchers in knowing what topics need to be addressed through future research and/or clinical projects to help support the needs of unaffected siblings as well as the needs of their affected siblings.

This program supports data collection and sharing that will expand and improve medical research. By generating the most comprehensive Data Collection Program for these conditions, we can increase research and accelerate the development of new drugs, devices, or other therapies. Participating families will also have the ability to connect with other patient organizations, be contacted to participate in emerging clinical trials (if eligible), and manage how their data is used.

What are the goals of the study?

The RARE-X Data Collection Program makes data collection free, accessible and easy for communities, while ensuring the data collected is as useful and shareable as possible for researchers and others working on treatments. Our goal is to enable families to easily collect and access their data and empower them to become data stewards and sharers. This program helps create a robust data set that can be shared to accelerate diagnosis, disorder understanding, and drug and therapy development.

What will happen during the visit or online?

Participants will be asked to create a secure, password-protected account and provide their consent to participate. Participants will then have the chance to answer a set of questions (survey) regarding the patient’s health history, development, and treatment and care. Additional surveys will be added over time and participants will be notified of future surveys relevant to them. Participants will also have the opportunity to upload genetic test results related to the disorder diagnosis.

How will this help families?

Participation in this program may…

  • Contribute to further research leading to the development of treatments
  • Provide patients the opportunity to participate in clinical trials
  • Help you learn more about the disorder, leading to better advocacy in medical, education, and social services
  • Inform patients/families about the progression of the disorder and how they may compare with other patients

CAR researchers, our colleagues across CHOP and Penn, and autistic partners are collaborating to address several obstacles that autistic youth and their families face during the transition to adulthood.

What are the goals of the study?

The goal of this study is to learn more about the decisions you make about transportation, including driving. We also hope to learn about how transportation influences quality of life and other outcomes.

What will happen during the visit or online?

First, parents will answer questions about themselves and their child. Then, both parents and their child will complete up to six surveys over the course of two years. The surveys will ask about your thoughts and experiences with transportation and driving, quality of life, relationships, and other outcomes.

How will this help families?

We are identifying information that autistic youth and parents can use to make decisions about driving vs. other forms of transportation, and best practices for teaching autistic drivers.

What are the goals of the study?

The goal of this research study is to develop an online questionnaire about what youth with Autism Spectrum Disorder (ASD) eat and how it impacts their daily lives.

What will happen during the visit or online?

Youth (7-16 years) and their parent will complete a questionnaire about food and eating habits online. Parents will complete an additional child background and medical history questionnaire online. Participants will be paid for their time with an Amazon online gift card.

How will this help families?

There is a very limited number of reliable tools that can be used to assess quality of life in autistic people. This issue limits our ability to accurately assess and track client needs, review progress, set priorities, and evaluate service appropriateness and effectiveness. To address this problem, researchers at CAR work on developing surveys and measures for autistic individuals of different ages.

What are the goals of the study?

The goal of this research study is to learn more about how families manage mealtime and bedtime routines at home.

What will happen during the visit or online?

Participants will be invited to complete several surveys online about their child’s health and behavior, their health as the child’s primary caregiver, and their family. We expect that the online surveys will take less than 90 minutes. Some participants will also be invited to participate in a virtual interview. In this interview, we will talk about how the family manages the day-to-day responsibilities of caring for their child. We expect that the interview will take about 60 minutes. As a part of this study, we will access the child’s electronic medical record to view medical information that is necessary to understand the child’s condition.

How will this help families?

For over a decade, autistic self-advocates and their families have asked scientists and clinicians to carry out more research that addresses the obstacles to a higher quality of life.