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.

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.

Research shows that many children on the autism spectrum experience high levels of anxiety, but most of the questionnaires used to measure their anxiety were developed for neurotypical children. We are interested in understanding the way children on the autism spectrum experience anxiety, and whether these questionnaires do a good job of measuring their anxiety symptoms. In this study, ask parents/caregivers to tell us about how their child shows their general, day-to-day anxiety, and their thoughts on how well a widely used anxiety questionnaire aligns with their child’s anxiety presentation.

What are the goals of the study?

The goal of this study is to identify ways that trait anxiety manifests in children on the autism spectrum. We will also investigate whether a standardised trait anxiety questionnaire does a good job of measuring their anxiety symptoms.

What will happen during the visit or online?

We are asking parents of a child on the autism spectrum to answer an online questionnaire that will take around 45 minutes to complete. The questions are about how the parents observe anxiety in their child on the autism spectrum and asks for their feedback on a trait anxiety questionnaire.

How will this help families?

This research will help professionals and other researchers to understand which anxiety questionnaires are suitable to use with children on the autism spectrum, which improves their understanding of the child’s experience.

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.

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.

Autistic individuals experience depression differently, and at a higher rate, than typically-developing individuals, yet there is no measure that specifically measures depression in autistic populations. As such, we have created a new measure to look at depressive symptomatology as seen in autistic populations. Our study will provide us with a more complete understanding of autistic youth’s mental health, while also providing professionals with a more accurate understanding of how to tailor treatments for depressive symptoms in autistic individuals.

What are the goals of the study?

In our study, we are investigating the overlapping symptoms between depression and autism. The goal of this project is to learn more about depressive symptoms that autistic adolescents may show. We are also hoping to gain a better understanding of whether parents attribute such symptoms to their child’s primary diagnosis of ASD, or to depression, or to something else such as puberty or stress.

What will happen during the visit or online?

Adolescents will be asked to complete a questionnaire about their feelings over the last two weeks. This will take approximately 30 minutes. Parents will also fill out a questionnaire about their child’s feelings, behaviours, and emotions over the two weeks. Then, parents will be asked to complete another questionnaire about their child’s behaviours and emotions over the past 6 months. Together, this should take approximately an hour and a half and will be completed over Zoom. Parents will receive a $20 Amazon gift card and adolescents will receive a $10 Amazon gift card for participating.

How will this help families?

Co-occurring conditions such as depression in autistic individuals can increase stress on both the individual and their family. Our study will provide us with a more accurate understanding of the rate of depression in autism, how depression affects autistic individuals and their families, and how to care for families that are experiencing depression in autism. As such, we can begin to lessen the stress and other impacts that depression can have on autism, and improve the lives of autistic individuals and their families.

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 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.

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

You will be paid for your time and travel expenses. You will also be given a written report and receive personalized feedback on your child at each 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 when your child is one 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?

CAR researchers are focused on understanding the very earliest signs of autism, in order to use that knowledge to help families access evaluations and services as early as possible.

What are the goals of the study?

The purpose of this research study is to examine relationships between brain and behavior development in toddlers with and without autism who have older siblings.

What will happen during the visit or online?

Your participation would involve you coming to the Center for Autism Research at CHOP in Philadelphia with your toddler.

There are four parts involved in your participation:

  1. A remote video call interview with you and our study’s clinical psychologist.
  2. Online questionnaires which you will complete on your own time on any internet device.
  3. A behavioral evaluation of your toddler. For this part, you will first visit the Center for Autism Research with just you and your toddler. After this behavior evaluation, we will schedule a follow-up video call with you, where the psychologist will inform you about the testing results.
  4. If your child meets our criteria, we will ask you to return for an MRI scan of your toddler’s brain while they sleep.

You will be compensated for your time and effort dedicated to the study and you will be reimbursed for your travel expenses to CHOP.

How will this help families?

A focus on the earliest signs of autism is critical for families, so that children can access services and supports as early as possible. CAR researchers are using neuroimaging methods to identify brain signatures in children starting from 6 months of age onward that might be associated with autism in children with and without a family history of autism.