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?

Researchers from Rutgers University are recruiting children/adults and their parents or caregivers for a research study assessing the utility of a diagnostic interview for autism evaluations.

What will happen during the visit or online?

Children/adults will complete questionnaires (if able) and one 2-3 hour diagnostic evaluation. Parents/caregivers will complete questionnaires and two 2-4 hour interviews. A 1-hour feedback session to review test results.

How will this help families?

Families who complete the study will receive a brief written summary of results from their assessment and a $75 gift card.

Social interaction during early childhood is a critical component of development. This project explores these interactions during play among children with and without autism spectrum disorder to better understand how children learn to engage with their environment and the people around them. The results of this project may lend itself to improving early screening, diagnosis, and intervention processes for young children with autism spectrum disorder and their families.

What are the goals of the study?

The goal of this project is to explore the early visual experiences of children during social play with their parents and how these interactions may influence different aspects of their development, such as language and cognition.

What will happen during the visit or online?

You and your child will be asked to play with a set of toys for approximately 5 minutes while wearing head-mounted eye-trackers. Depending on your child’s age, your child will also be asked to complete: the ADOS-2 (a gold-standard autism diagnostic test; 12mo and older), an IQ test (12mo and older), a motor assessment (18mo or younger), and/or two vocabulary tests (30mo or older).

How will this help families?

Families will receive a free summary of their child’s assessment results (autism diagnosis, vocabulary, motor skills, and/or Q) along with an Amazon gift card, family passes to the Children’s Museum of Houston, and a gift-bundle (toys, books, crayons, T-shirt, etc). We hope this project will ultimately assist in improving early screening, diagnosis, and intervention processes for infants and toddlers that may have autism spectrum disorder.

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.

While there have been large-scale genetic analyses of autism spectrum disorder, there have been little efforts to investigate this in Hispanics and Latina/Latino populations (henceforth Latinx), the largest minority population in the United States. Inclusion of under-represented populations in genetic studies is important both for scientific reasons and for equity. The genetic architecture of ASD is complex and ongoing efforts to decipher it have focused on both common and rare genetic variants and investigating whether the genetic architecture differs across ancestral populations is important in order to have informed care and risk factors for underrepresented groups.

What are the goals of the study?

The central purpose of this project is to collect genetic and phenotypic information about childhood psychiatric conditions, with the aim of finding links between core symptoms, cognitive ability, and underlying neurobiological mechanisms. To better understand and investigate the genetic risk for autism spectrum disorder (ASD) in people through observation of its genetic architecture across ancestral populations. Specifically, we aim to further our understanding of ASD in Hispanic/Latinx populations, the largest minority population in the U.S. and an admixed population.

What will happen during the visit or online?

Participating in the study typically requires two in-person visits, one for an autism evaluation and one for IQ testing and DNA Collection. The DNA Collection can either be a blood draw or saliva collection; we collect DNA from the person affected with ASD and two biological family members. Furthermore, there is a zoom interview between a clinician and parent for our children participants and online forms that must be filled out. Families will be compensated $100 and will receive a report of the assessments completed.

How will this help families?

Families will be able to receive a report of all assessments done and receive compensation. Receiving an appointment for an autism evaluation and updated reports can often take several months to years, while here it takes a couple of weeks. Our reports can be often used for school or to apply to additional services. Adding on, our coordinator speaks Spanish which can often aid families that don’t speak English and helps remove that barrier to care. Furthermore, this will help families in the future by investigating risk factors in the development of ASD which can help inform clinical care for diverse populations.

Through this study, the SENSE Lab hopes to learn more about the unique and challenging process of puberty in females with ASD and provide information to families and caretakers in order to make the transition from childhood to adulthood easier. This study aims to understand and track puberty in females with and without ASD so clinicians are able to provide meaningful approaches and interventions in the future during this critical time period.

What are the goals of the study?

The mission of the SENSE (Social Emotional NeuroScience Endocrinology) Lab is to better understand the social and emotional functioning of youth autism and to translate findings into meaningful approaches and interventions. Significant physical, psychological, hormonal and social changes occur during pubertal development. Adolescence may be uniquely challenging for girls especially those with autism spectrum disorder (ASD). The goal of our study of girls with autism or typical development is to promote, understand, build, enrich, respect, and track youth.

What will happen during the visit or online?

Participants will come to Vanderbilt University Medical Center once a year for four years. Each visit includes a physical exam, blood draw, brief psychological exam, brief social interaction, and EEG. Participants will be expected to take saliva samples at home prior to study visits and complete menstrual tracking surveys.

How will this help families?

This study will help provide vital information regarding puberty in females with ASD and help families further understand the unique timing and tempo of puberty in autistic females. In addition to study compensation, families will receive annual research letters of standardized measure results and an annual symposia on topics related to pubertal development and ASD will be provided for families. We aim to be available to families for questions and concerns relevant to the focus of the study; namely, adolescence, puberty, and mental health. If developmental needs arise, our multidisciplinary team will do our best to provide support.

The Autism Biomarkers Consortium for Clinical Trials (ABC-CT) is a multicenter research study led by Yale that also includes Duke University, Boston Children’s Hospital, Children’s Hospital of Los Angeles , and the University of Washington/Seattle Children’s Research Institute. The aim of the consortium is to develop reliable and objective measurements of social function and communication in children on the autism spectrum.

What are the goals of the study?

The aim of the consortium is to develop reliable and objective measurements of social function and communication in children on the autism spectrum.

What will happen during the visit or online?

Caregivers will complete a screening phone call and questionnaires about their child. Children will complete in-person study visits at Boston Children’s Hospital over a 6 month period. Scheduling is flexible including weekends.

How will this help families?

Currently, ASD is diagnosed and treated based on information gathered from clinical assessments and parent questionnaires. ABC-CT will add to this pool of knowledge by developing a more objective battery of tools to measure social function.

Autism is often not diagnosed until after 24 months of age, yet through our IBIS research, we’ve identified early changes in brain development occurring between 6 and 12 months. By further expanding our research in early brain development, we hope to identify methods for earlier identification and more individualized treatment.

What are the goals of the study?

Our goal is to understand early brain development in autism, which we hope will lead to earlier identification and more individualized supports.

What will happen during the visit or online?

Families travel to one of 5 sites for visits at 6, 12 and 24 months. Visits last approximately two days and include un-sedated MRIs during natural sleep along with various developmental assessments. Participants receive around $450 per visit along with reimbursement for travel expenses. This study is being conducted nationally across 5 sites in Seattle, Minneapolis, Chapel Hill (NC), Philadelphia, and St. Louis

How will this help families?

We hope to identify methods for earlier identification of autism and more individualized interventions.

What are the goals of the study?

This study proposal seeks to collect a foundational dataset to determine how basic perceptual processes may explain individual differences in social communication in children with Autism Spectrum Disorder (ASD). Issues in social communication often refers to high-level visual skills such as discriminating facial expressions, or auditory skills such as discriminating between different tones of voice.

What will happen during the visit or online?

Participants will complete tasks where they are presented with stimuli that they see, hear, and, touch and will respond to them in questions that ask about what they perceived, remembered, and/or ask them to solve puzzles. Participants’ guardians will be asked to complete a variety of questionnaires about your child. These may ask about personal information, aspects of the child’s personality and habits, questions about their experiences and feelings. They will be asked to participate in 3 experimental sessions that will last up to 60 minutes. Participants will download experimental software for these sessions onto their tablet or smartphone.

How will this help families?

Identifying distinct groups within our ASD sample is critical for future work on intervention efficacy and for better understanding the mechanisms which lead to the wide range of abilities and symptoms observed in ASD. If we find these hypothesized relationships between our specific tasks and tasks of emotion recognition, it could help individualize interventions for children who struggle with specific aspects of social functioning. For example, if a child’s intervention goals included improving her ability to recognize affective facial expressions, our data would provide preliminary evidence that she may benefit from tasks training visual contour integration (along with more traditional explicit teaching methods). Further, these tasks can be used in young children to potentially identify early developmental signs of ASD and interventions for basic perceptual processes at these earlier stages may help aid their social development. Identification and validation of potential subgroups of children with ASD will inform future research efforts in a variety of domains (e.g. neuroscience, pharmacological and/or behavioral clinical trials, genetics, etc).

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