The Experiences of Mothers Feeding Their Infants with Autism Spectrum Disorder

A nursing PhD student at Vanderbilt University is looking for mothers of children with Autism Spectrum Disorder to share their experiences they had in feeding their child at the ages of 0-12 months. Feeding difficulties have been identified in older children with autism but few studies have looked at the feeding difficulties children with autism have before the age of 2 years old. Identifying infant feeding difficulties in autism may help with surveillance for earlier diagnosis and to better support mothers who are experiencing difficulties feeding their infant.

What are the goals of the study?

The purpose of this study is to investigate the feeding difficulties of infants who are later diagnosed with autism compared to their neurotypical sibling to identify any feeding characteristics that would warrant increased monitoring for autism in infancy.

What will happen during the visit or online?

One 30-45 minute online interview with a follow-up phone call or email if any additional information or clarification is needed regarding the information obtained in the interview. Participants will receive a $25 gift card for their time.

How will this help families?

This study may help inform better ways primary care providers (PCPs) ask questions at well child visits to identify infants that are experiencing feeding difficulties, improve PCP surveillance for neurodevelopmental delays in infants by assessing feeding, and improve PCP support for mothers experiencing difficulty feeding their infants.

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.

In our international study, we want to find out how Selective Mutism differs from Autism Spectrum Disorder. We are particularly interested in whether the situation has an influence on certain symptoms, for example, whether symptoms occur just as frequently at home in a familiar environment as in an unfamiliar environment. A symptom could be described as a sign by which a particular mental illness can be identified. In general, mental illnesses are associated with various symptoms. Therefore, in order to recognize a mental illness, it is essential to know as many symptoms as possible and to know how often and when they occur. This is particularly important for diagnostics, but also when it comes to providing the affected children with the best possible therapeutic support. We are also interested in surveying parents of neurotypical children without mental illness to determine possible differences. The study involves six questionnaires (approximately 40 minutes) that are completed online.

What are the goals of the study?

To gain knowledge on symptoms of selective mutism and autism and whether those are context-dependent.

What will happen during the visit or online?

Fill out questionnaire

How will this help families?

There are several hints that selective mutism is comorbid in a significant portion of autistic children. This research will enhance our understanding of selective mutism and autism and will help differentiate between the two conditions.

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.

There is a need for detailed and reliable information on the prevalence of alcohol and drug use among adolescents and young adults with ASD. This study will produce important new knowledge about this, as well as verify or refute risk and protective factors of alcohol and drug use within this population. Study findings will help inform identification and prevention/intervention work.

What are the goals of the study?

The goal of this study is to learn more about the development and experiences of adolescents and young adults (age 12-24) who have been diagnosed with autism spectrum disorder as they navigate from adolescence to early adulthood. We are especially interested in their exposure to alcohol and other drugs.

What will happen during the visit or online?

Participation involves 4 visits over 3 years and consists of short interviews and questionnaires. Visits can be done in-person or remotely. Each visit is one year apart. There is also a parent/guardian component for parents/guardians of eligible youth.

How will this help families?

Findings from this study will help researchers learn more about what helps and hinders development in persons who have been considered to be on the spectrum. This will help inform future research and assist in the identification, prevention and intervention work associated with alcohol and drug use disorders.

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.

Researchers at Deakin University are seeking participants for an online study investigating how and why personality traits, characteristics, and behaviours associated with autism and anorexia are related.

What are the goals of the study?

We are doing this research because there is evidence that autism and anorexia might overlap, and we want to understand this overlap better. Better understanding of factors that contribute to the overlap between autism and anorexia will help us to better detect these conditions and offer appropriate support to those who require it.

What will happen during the visit or online?

If you choose to participate in this study, you will be invited to complete an online survey and computerised tasks. The study will take approximately 1 hour to complete, and upon completion, participants will go into the draw to win one of 10 AUD$150 gift cards.

How will this help families?

Improving understanding of these disorders will help us identify appropriate support for individuals with autism and improve clinical practice.

SOR is highly prevalent in individuals with autism spectrum disorder (ASD), causing discomfort and stress, impacting daily life.

What are the goals of the study?

The goal of the study is to see what effects transcranial magnetic stimulation (TMS) has on neurobiological mechanisms underlying sensory over-responsiveness (SOR) in individuals with autism.

What will happen during the visit or online?

Participants will undergo MRI and TMS as well as answer online questionnaires.

How will this help families?

To date there a few treatments for SOR and TMS could be a treatment that ends up dramatically improving the quality of life of ASD individuals and their families.

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)

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.