Pilot and Try-Out of the Draft TPI

My name is Samri and I am a research participant recruiter from Miami University’s Later Language Development Lab. I am reaching out to you today with the opportunity to contribute to our NIH-supported research on the development of a social communication assessment tool which targets adolescents and young adults at the age of transition. We are currently seeking participants between the ages of 14 and 21 years old with a native proficiency in English and typical hearing. We are asking that participants meet one-on-one with a member of our research team for 1-1.5 hours via Zoom to answer a series of interview questions which probe their knowledge of how to communicate in different contexts. After, the participant will be paid the sum of $30-50 via Zelle for their involvement. This study is being conducted by Dr. Trace Poll from the Speech Pathology and Audiology Department at Miami University alongside Jan Petru from Elmhurst University, who is acting as our clinical consultant for the study.

What are the goals of the study?

Specifically, we are continuing research on our development of a social communication assessment tool tailored to adolescents and young adults preparing for the transition from high school to post-school contexts. This tool that we are developing is called the Transition Pragmatics Interview (or the TPI).

What will happen during the visit or online?

This commitment includes the signing of a consent form, the completion of a brief history form, and a 1-1.5 hour meeting via Zoom to answer interview questions probing their knowledge of how to communicate in different situational contexts.

How will this help families?

The information from this project provides information on the degree to which the TPI is a valid and reliable measure of social communication. Speech-language pathologists, special educators and related professionals currently lack assessment instruments that address the population and contexts targeted by the TPI. The project will indicate how the TPI may improve on clinical judgment, or the findings of instruments less targeted to the needs of adolescents and young adults with disabilities in transition programs. Fundamentally, the results will indicate how the TPI may be refined in order to become a more valid and reliable measure.

Recent work suggests that mothers of children with disabilities are at increased risk for accelerated cognitive aging. Mothers of children with autism spectrum disorder (ASD), in particular, may be especially susceptible to atypical aging given their elevated rates of key risk factors for dementia relative to mothers of typically developing children or children with other neurodevelopmental disorders. A significant number of mothers of children with ASD (up to 65%) continue to be caregivers for their adult children, resulting in increased stress, depression, loneliness, reduced social support, and poor sleep, all of which are risk factors for dementia-related disease. This NIH-funded study conducted by Dr. Laura Friedman at the University of South Carolina aims to address gaps in the literature on cognitive decline in mothers of children with ASD and associated risk factors.

What are the goals of the study?

Findings from this study will provide insight into atypical cognitive aging among mothers of children with ASD as well as potential risk factors. This will shed light on the need to monitor aging in this group, which may have broader consequences on their children who continue to live at home and depend on their parents as caregivers after high school.

What will happen during the visit or online?

You will complete 1 hour of surveys about various topics related to your life, including your memory and mental health. Then you will complete a 2 hour interview via Zoom with a trained examiner who will ask you questions about your experiences. You will also complete measures of thinking skills and attention.

How will this help families?

This study will contribute to our understanding of the potential link between autism and dementia-related disease, and is an important step in identifying the need for and advocating for family-centered supports through the lifespan.

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.

Western Michigan University psychology researchers are currently seeking parents of autistic individuals/individuals with autism spectrum disorder (ASD) who are receiving applied behavior analysis (ABA) treatment to participate in a study. Previous research has examined a range of parent, child, and contextual factors associated with quality of life and psychological wellbeing in parents of children with autism. However, to date, only a small number of studies have characterized both the self-care practices and the correlates of self-care in parents of children with ASD.

What are the goals of the study?

The purpose of the research is to learn more about parental self-care practices and factors related to caring for a child with autism that impact a parent’s quality of life and self-care.

What will happen during the visit or online?

Participants will be asked to complete an anonymous online survey. The survey should take approximately 20-minutes to complete.

How will this help families?

It is anticipated that the results of this study will further the field’s understanding of the self-care practices of parents of children with autism, potentially help us identify characteristics of parents who may be at particular risk for poor self-care, and ultimately may help identify supportive mechanisms that treatment providers may be able to provide for parents and caregivers.

The GEMMA (Genome, Environment, Microbiome, and Metabolome in Autism) project aims to understand the many factors that contribute to the development of autism in children who have an autistic sibling.

What are the goals of the study?

The GEMMA project aims to understand how genes, the environment, gut bacteria, and the digestion of food may relate to the development of autism.

What will happen during the visit or online?

  1. Online surveys about food, health, and behavior,
  2. Behavioral assessments (on Zoom) every 6 months from ages 1 to 3,
  3. Periodic saliva, urine, stool, and blood samples (done at home/locally) until age 3,
  4. One time samples from one or both biological parents and from the sibling with ASD

How will this help families?

Your family will be contributing to research that aims to help improve the early diagnosis of autism, as well as understand the GI symptoms associated with autism. All infant participants will receive early developmental assessments from study psychologists.

Six-to-ten year old children with autism spectrum disorders are invited to participate in a fun study, which involves wearing an actigraphy watch for two weeks (to estimate the quality and other characteristics of the child’s sleep) and participation in one MRI session at SDSU Imaging Center. Both children and parents are asked to keep sleep diaries for the two weeks when the child is wearing the actigraphy watch. Finally, children are asked to take part in a brief cognitive testing session. The study aims to understand the links between sleep (problems) and brain development in children with autism.

What are the goals of the study?

This study aims to understand potential mechanisms underlying sleep disturbances in autism.

What will happen during the visit or online?

Children will be asked to wear an actigraphy watch for two weeks, keep sleep diaries, take part in one MRI scan, and complete a brief behavioral assessment session.

How will this help families?

Sleep problems affect 50-80% of individuals with autism and can have cascading effects on development, everyday function, and quality of life. However, the mechanisms underlying sleep disturbances in ASD are not understood. A better insight into the potential mechanisms of sleep disturbances in autism may ultimately help with developing new treatments targeting sleep in children with autism.

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

In this study, we will present a series of validated eye tracking paradigms (e.g., images of faces, videos of social interactions) while we monitor eye movements and physiological arousal. Two research assistants will also collect behavioral reports of ASD and ADHD symptoms from 8-12 years old participants. These data will allow us to examine how and if eye movements, arousal, and questionnaire outcomes differ between children with ASD and ADHD. By combining eye tracking/arousal measures and behavioral assessments, we will then draft a map of how these social cognitive traits manifest in eye movements.

What are the goals of the study?

The primary aim of this study is to test the utility of a social cognitive battery incorporating psychophysiological measures to differentiate between autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD).

What will happen during the visit or online?

A brief telephone screening will be conducted to determine if the child and family are interested in the study. Then, a research team member will schedule a time for the family to come into the lab for approximately 90 minutes. Prior to the visit, parents will be asked to send a copy of a recent diagnostic assessment to confirm diagnosis. During the visit, the participant will come to our lab with their parent. Upon completion of the consent and assent, cognitive screener will be conducted first to the child and then the eye tracking tasks will be administered using the Eyelink 1000. We will ask the child to sit in front of a computer screen, and we will be showing the child some videos and images while the computer will track the child’s physiological response and their eye movements. Parent and caregivers will complete a few questionnaires by the time. Upon completion of all measures, the participant will be given a $20 gift card for their time.

How will this help families?

Families will receive a feedback summary compiling information regarding their responses on questionnaires, including the Conners, SRS, and CBCL. Families will learn about their children’s current condition in behavior performances and cognitive development. If requested by contacting the lab via phone or email (or indicating during the study visit), a 15 minute phone feedback session will be scheduled for the parents with the PI, clinical psychologist, to discuss the results from the questionnaires. This will also offer the PI a chance to address any other questions the parents may have. Participants will also be compensated $20 for their time.

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.

Diagnosing ASD is challenging, and in most cases, a variety of subtle signs, unique to each child, build up starting in the 1st year (e.g., social, language, motor, attention skills). Motor skills, an understudied area, is also one of the earliest skills affected; although we are aware that early intervention is associated with the best outcomes, the median age of diagnosis remains 4 years. If we could detect signs of ASD earlier and more reliably, we could identify children who would benefit from behavioral therapies faster.

What are the goals of the study?

Our goal is to validate wearable-sensor methodology (wrist-worn accelerometers) for quantifying two endophenotypes: hyperactivity (HYP, an early marker of liability to Attention Deficit Hyperactivity Disorder, which is strongly comorbid with autism) and impairment in motor coordination (MOT). We expect to gain a comprehensive understanding of motor endophenotypes in infants and children as a launching point for future screening and early intervention studies in children at a high-risk for autism.

What will happen during the visit or online?

You and your child will visit Washington University up to two times when they are 18-39 months of age. Prior to visiting, parents will complete online questionnaires about family history and your child’s development. Families are compensated for their time. In-person activities include the children participating in tasks testing gross and fine motor skills. Following the in-person motor and social assessments, the child will be given an accelerometry wristband to wear at home for 48 hours, and a parent will need to record notes of their motor activity.

How will this help families?

If we could detect signs of ASD related to motor skills earlier and more reliably, we could identify children who would benefit from behavioral therapies faster. Earlier access to behavioral therapies for children diagnosed with autism can lead to faster improvements and better outcomes for their behavior.

This study will look at how our participant’s sensory processing changes as they develop into adolescents. This is an important period of growth and can greatly inform us about what changes the brain undergoes during this time, something that can be useful for future studies.

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?

Participants will complete an MRI as well as some sensory games and questionnaires. There are some short cognitive assessments done to confirm eligibility for the study.

How will this help families?

Our study provides research reports to families describing their child’s sensory processing abilities in relation to their peers. This research may also help inform future research into treatment for sensory over-responsiveness (SOR)

This study will help us learn more about early signs of emotional and behavioral challenges that many siblings of children with autism start to have by age 3. Findings from this study may help us identify and treat these challenges earlier in life. As part of the study, your child will receive multiple diagnostic evaluations from expert clinicians at the Yale Child Study Center.

What are the goals of the study?

We are recruiting infants for a study of emotional development. The study is looking at emotions in siblings of children with autism from 4-30 months of age. The goal is to learn more about early signs of behavioral and emotional challenges that may develop when children are 2-3 years old.

What will happen during the visit or online?

You and your baby will come to the lab for 5 study visits over 2.5 years. Each visit will last a few hours. During the visits, your baby will participate in clinical assessments, watch videos, and complete play-based tasks. You will fill out surveys and participate in interviews about your baby, yourself, and your family. All visits will take place in New Haven, Connecticut. Free and secure parking is provided. Families will receive up to $250 for being in the study.

How will this help families?

This study will help us learn more about early signs of emotional and behavioral challenges that many siblings of children with autism start to have by age 3. Findings from this study may help us identify and treat these challenges earlier in life. As part of the study, your child will receive multiple diagnostic evaluations from expert clinicians at the Yale Child Study Center.