Investigating neurocognitive profiles in parents of children with autism and anorexia

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.

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.

The study of people with new onset face blindness points to a particular brain circuit. We are investigating if this same brain circuit is involved in face recognition difficulty in individuals with autism. If successful, this study may identify new ways to improve face recognition ability.

What are the goals of the study?

Some individuals with autism have difficulties related to face processing and recognition, which can have substantial effects on everyday life. For this study, we hope to figure out where these face processing difficulties arise in the brain. This research could help us provide targets for treatment and could aid in the development of biomarkers for future detection.

What will happen during the visit or online?

The study involves one virtual visit and one visit to Boston Children’s Hospital. The first study visit will involve a series of computer activities designed to measure face processing and should last around 2 hours. The second study visit will involve an MRI, during which the participant will complete additional face processing tasks. This second visit may last up to 3 hours. In between these two visits, we will also share a link to some questionnaires to be completed online by the participant and a caregiver.

How will this help families?

It may lead to new treatments for face recognition difficulties which may help social development.

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.

This study will test the Training to Understand and Navigate Interactions (TUNE In) program via a randomized control trial.

What are the goals of the study?

The purpose of this study is to develop and test ways of helping adults with autism to improve their social functioning.

What will happen during the visit or online?

Complete psychological questionnaires at three points. 50% chance to receive 17-week TUNE In Program consisting of individual sessions, group sessions, and advocacy sessions.

How will this help families?

Participation could lead to increased interest in interacting with others; improved ability to understand other people, emotions, and communication between people; improved social skills; and an improved ability to apply that understanding and skill to day-to-day life. These improvements could lead to better interactions with other people in many settings.

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.

SOR is a highly prevalent feature of autism spectrum disorder (ASD). SOR can be highly disruptive yet there are few treatments to deal with this discomfort. This study can validate a readily available medication to be used as a treatment for SOR.

What are the goals of the study?

The goal of the study is to examine the short-term effect of propranolol on observed sensory over-responsiveness (SOR) behaviors. The study will also look at biomarkers (heart rate, sweat response, neural activity) associated with a SOR response to characterize the effect of propranolol.

What will happen during the visit or online?

Participants will take medication at two time points and then complete an MRI and sensory games. Families are also asked to complete questionnaires as part of the study. Short cognitive assessments may be completed to confirm eligibility for the study.

How will this help families?

Participating in this study will allow families to see if propranolol is an effective intervention for SOR and can help with discomfort or distress associated with it. This study can also lead to clinical trials aimed at finding more treatments for ASD individuals with SOR.

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.

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.

Individuals with autism are significantly under-employed, and those within 2 years of high school graduation experience the most significant risk of unemployment. If successful, this research study will result in a novel intervention that enhances interviewing skills that may lead to better employment outcomes. While the primary goal of the study is to improve character strength identification in the context of a job interview, it could potentially expand to other areas in life as well.

What are the goals of the study?

We are looking to evaluate how effective a strength-based intervention my be in improving job interview skills in young adults.

What will happen during the visit or online?

A baseline testing session, lasting roughly 2 hours. 2. After this testing session, each participant will be randomly placed into a “training group” (which will participate in 9 online sessions lasting 60 minutes each) or the “control group” (which will do nothing but will receive the training material to use on their own after study completion). 3. All participants will participate in a follow-up testing session, lasting roughly 2 hours. 4. After the follow-up session, participants will be contacted in 6 month by phone call.

How will this help families?

Inability to obtain work can lead to negative outcomes including reduced ability to establish financial independence and reduced satisfaction of life. In hopes of better employment outcomes for individuals with autism, this research study examines a novel intervention to enhance job interview skills.

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.