Autism Spectrum Disorder Parental Attitudes Survey

The current study is being conducted by Drs. Knutson, Viskupic, and Wiltse from South Dakota State University. This is a collaborative initiative to gain insight into various areas impacting the autism community. Dr. Knutson is a clinician having worked with autistic individuals and families for 15+ years. Drs. Viskupic and Wiltse are political scientists who examine attitudes and behaviors surrounding the COVID-19 pandemic. Key points to the study: Prevalence and impact of head-directed self-injurious behavior – Attitudes surrounding supportive equipment – Impact of COVID-19 on access to treatment and healthcare choices.

What are the goals of the study?

Our goal with this study is to gain critical information impacting families who have a loved one with autism. By gathering this information, we hope to improve individual safety, treatment options, treatment accessibility, and policy change supporting family needs.

What will happen during the visit or online?

Participating means completion of an online survey through QuestionPro. You may skip any questions you do not want to answer. We anticipate it will take about 10 minutes of your time.

How will this help families?

These data will assist us in supporting families and individuals impacted by autism, head-directed self-injury, the development of supportive equipment to better protect individuals and guide treatment, and to understand how the recent worldwide COVID-19 pandemic impacted this population to support policy/planning.

Researchers in the Vanderbilt University Medical Center department of hearing and speech sciences are running a study to better understand why some autistic people are more sensitive to everyday sounds than others and how this relates to the way the brain processes sound.

What are the goals of the study?

Although they are not frequently diagnosed, sound sensitivity disorders, including hyperacusis, misophonia, and phonophobia, are extremely common in the autistic population. The purpose of the current research study is to compare and contrast people with and without these different sound sensitivity syndromes in terms of their clinical symptoms, hearing, brain function, and mental health. By examining a group of adults with ALL levels and types of sound sensitivity (including no sound sensitivity at all), we hope to answer fundamental questions about the nature of sound sensitivity and improve the ways in which clinicians diagnose and assess patients with this common complaint.

What will happen during the visit or online?

Study participants will be asked to complete some online questionnaires and come to Vanderbilt for up to two in-person sessions. The first in-person session includes psychoacoustic (hearing) tests, interviews, and standardized psychological assessments. After that session, you may qualify for a second session that will include more hearing tests, brainwave recordings (EEG), and other measures of auditory function. There are no anticipated risks to you, and you may not benefit directly from your participation in this study, though you will have the opportunity to request a report of your study results. Following a screening questionnaire (approximately 10–15 minutes), there are two visits to the laboratory (each lasting approximately 3-5 hours) and two groups of online questionnaires (approximately 20–40 minutes each).

How will this help families?

Currently, research on autism and sound sensitivity has been limited to primarily descriptive studies of prevalence, and there is very little understanding of underlying mechanisms, let alone any evidence-based diagnostic or treatment strategies. This work will be foundational in advancing our knowledge of this problem and its underlying causes in the autistic population, which can hopefully lead the way toward better clinical care for autistic people who experience sound sensitivity in their everyday lives.

Post-pandemic, so much healthcare-related assessment is taking place remotely. This can be much more convenient for families with a child who has a complex neurodevelopmental disorder, but we need to know how the information from a remote assessment compares to an in-person one. This project aims to do just that: compare how a child performs on a series of speech, language, and motor assessments in our lab and remotely, at home. We hypothesize that children will perform at least as well when they are in a familiar place like their home.

What are the goals of the study?

This project aims to validate a remote assessment protocol for spoken language and motor skills against the same data collected in person. The purpose is to understand the relationship of scores derived from the tasks when administered in person and via Zoom.

What will happen during the visit or online?

Children with neurodevelopmental or genetic diagnoses between the ages of 2 and 18 are welcome to participate. Families will come to the Motor Development Lab at Boston University for a 2-hour in-person visit where children will participate in a series of motor and spoken-language assessments. Motor assessments will include walking back and forth on our “magic carpet”, which records each of their footsteps, playing a “flamingo game” by balancing on one leg, and putting coins into a piggy bank. Spoken language assessments will include watching a preferred video while we record children’s facial movements, attempting to repeat a set of 8 syllables, a picture-naming task, and trying some tongue-twisters. The specific spoken-language tasks for each child will be selected based on their verbal ability, so everyone has a just-right challenge. The in-person and remote assessments will be audio- and videotaped for later analysis.

At the end of the in-person assessment, families will receive $25, and we’ll make two Zoom appointments. One will be for parents to complete a set of questionnaires about their child’s history and current skills, and the other will be to complete the same spoken-language and motor tasks they just finished at home, via Zoom. Once the two remote sessions are complete, families will receive another $75 and a personalized report if they would like. Parking will be free for the in-person session.

How will this help families?

To create a data set that will help us find potential predictors of spoken language outcomes in children with neurodevelopmental (including autism) and genetic disorders, we need a highly reproducible, validated assessment protocol that can be used with children no matter what their diagnosis. The protocol must be able to be administered remotely as well as in person, because many children with these conditions do not live within easy travel distance of a clinical center and multiple in-person visits are impractical for families due to their already busy rehabilitation schedules. Valid remote assessment reduces the burden of participation in assessments and research studies for families who live in rural areas or lack the ability to take time off from work and spend money on long trips.

The purpose of this study is to understand the healthcare experiences of both non-autistic and autistic adults as well as their related needs. Participants that support adult family members at healthcare appointments will have the option to answer additional questions.

What are the goals of the study?

To improve education to reduce healthcare disparity and to offer guidance on universal design as well as accessibility.

What will happen during the visit or online?

Take an online survey

How will this help families?

Improve education for healthcare professionals and office workers

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.

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 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

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.

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.

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.

What are the goals of the study?

The goal of this study is to establish tools that can be used as biomarkers and/or assessments of social function in autism spectrum disorder (ASD) clinical trials. This study specifically aims to validate a set of measures that were previously identified as promising candidate biomarkers and/or objective measures of social function in ASD for potential use in clinical trials.

What will happen during the visit or online?

Currently, there are no validated biomarkers for use in clinical trials of ASD, which are essential tools for diagnosing individuals with ASD and recruiting them to appropriate research studies. Electroencephalogram (EEG) and eye tracking (ET) assessments are non-invasive and well-tolerated tools for studying early brain development. In this study, we will further explore the use of these tools as biomarkers in this population.

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 free detailed reports of behavioral assessments of their child that can be shared/discussed with their healthcare professionals.

What are the goals of the study?

We aim to examine developmental trajectories of sleep disturbances in youth with ASD aged 3-21 years. Typically developing participants will also be recruited for this study.

What will happen during the visit or online?

Participation involves behavioral assessments, questionnaires, and objective measurement of sleep quality using actigraphy for a limited period of time. All participants will be paid for their involvement in study components.

How will this help families?

Neurocognitive assessment provided for free plus access to sleep resources