The Truth About Others: A Paid Internet Study for Autistic Adults

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.

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.

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.

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

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.

You will be paid for your time and travel expenses. You will also be given a report and receive personalized feedback on your child at your child’s two-year visit. If your infant develops autism, we will assist you in finding services in your community. There is no cost to participate in the study and no insurance needed.

What are the goals of the study?

The goal of this study is to track the early development of infants with an older sibling, so we can better understand how autism develops.

What will happen during the visit or online?

You and your child will make 2-4 visits to CHOP’s Robert’s Center for Pediatric Research. We will observe as you and your child play with various toys, puzzles, and interactive items such as bubbles and balloons. Caregivers will answer questions about their children’s development and past medical history. Using these observations and questionnaires, we will assess your child’s language, motor, and social development after your child starts to walk and again when he/she turns two. We will also provide an expert autism evaluation when your child turns two years old.

How will this help families?

Through measuring facial expression, movement, and infant-caregiver synchrony in very young children as a novel tool, we are working on earlier autism detection and developmental characterization.

We are one site as part of a nationwide study, the Infant Brain Imaging Study (IBIS). Our team develops and implements advanced neuroimaging methods and tools to study the structural and functional features of the brain, to better understand the neurobiology of autism.

What are the goals of the study?

This study seeks to understand the key differences and similarities in brain development between infants whose siblings do and do not have autism.

What will happen during the visit or online?

Participants will be asked to make 3 visits to CHOP over time to complete cognitive and behavioral testing and a non-invasive MRI. Participants will be compensated for their time and receive a written feedback report.

How will this help families?

We study brain structure and function that are thought to support skills and behaviors related to autism, including social communication, repetitive behaviors, and co-occurring conditions of anxiety, ADHD and language impairment.

What are the goals of the study?

The goal is to learn how the environment affects children’s health and development, and how it interacts with genetic information. The environment includes things that children may experience throughout their lives or even before they are born, like the air they breathe, foods they eat, interactions with other people and the neighborhoods where they live. Children ages 5-11 and a biological parent are invited to participate.

What will happen during the visit or online?

The study involves one visit, with in-person and remote components, in which the child will complete a cognitive assessment and body measurements, and both the child and parent will complete questionnaires and provide bio-samples (saliva, blood, hair and toenails).

How will this help families?

ECHO is a nationwide research program whose mission is to improve the health of children for generations to come.

This project focuses on neurobiological aspects of aging in ASD that has promise of an immediate and direct impact on several of critical issues for this group. We hypothesize that individuals with ASD will have an exacerbation of deficits beyond normal aging, as evidenced in significantly lower scores on tests affected by aging (e.g., executive) along with neuroanatomical markers of dysfunction, and relative preservation of function sub served by more posterior brain regions (semantic memory and local detail processing). Our objective is to produce comprehensive cognitive, behavioral, and neuroimaging data on a set of well-characterized older ASD individuals who can be used as a reference for clinical diagnosis, therapeutics, and care plans.

What are the goals of the study?

As the first diagnosed Autism Spectrum Disorder (ASD) adults are aging, it is important that we understand the impact of aging on autistic adults so that we may inform strategies for independent living and improved health. By studying the aging brain in autistic adults and non-autistic adults, we can create strategies to inform interventions and improve health.

What will happen during the visit or online?

Participants are asked to completed a 90 minute MRI that includes some functional tasks and some resting. Participants are also asked to complete about 3-4 hours of cognitive testing. Participants over the age of 40 are invited to come back every 2 years to repeat the testing.

How will this help families?

We are hoping to inform strategies for independent living and improved health for autistic adults as they age. This will hopefully alleviate some burden parents and caregivers carry as they are concerned about the futures of the autistic individuals they currently support.

The results of the research may increase our understanding of language processing children with ASD. This may help us to design and implement targeted treatments for these children. Additionally, EEG can be used to study participants who are minimally verbal, so our research opens the door to children who are often excluded from research studies.

What are the goals of the study?

The purpose of this research is to better understand language impairment in children with autism spectrum disorder (ASD), using a noninvasive technology called electroencephalography (EEG). By presenting your child with a variety of pictures, words and sounds while recording his/her brain waves through EEG, we can begin to understand why some children with ASD have significant language impairment. Ultimately, this may help us design and evaluate more effective treatments and to better predict developmental outcomes.

What will happen during the visit or online?

You and your child will come into the research lab in person. You will complete questionnaires about your child’s developmental history and skills. Your child will complete standardized assessments evaluating ASD symptoms, cognition and language ability. The assessments will take approximately 2-3 hours. While wearing an EEG net, they will watch pictures and words on a computer monitor and listen to words and sounds. The EEG net is quick to put on and feels like wearing a swim cap. The EEG recording will last ~20-30 minutes. All activities can be completed in one day, or split up over two days.

How will this help families?

This study will not benefit participants directly, however, results of this study may help provide insight into ASD and may benefit children and their families in the future. Furthermore, by participating in this study, parents/guardians will receive results from standardized assessments of their child that can be shared/discussed with their healthcare professionals.