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.

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.

By learning more about how the ASD brain in children, we can help establish ways to identify and intervene in ASD early. If ASD is identified at young ages, resources such as social supports can bolster long-term adaptive functioning in children with ASD. Also, increased understanding about the mechanisms that underlie atypical social functioning in ASD will allow science to develop targeted, effective assistance for these youth as early as possible.

What are the goals of the study?

This project aims to further understand what makes the brains of children with autism spectrum disorder (ASD) unique. Specifically, this study is interested in helping us understand how neural processes in the developing ASD brain contribute to atypical social functioning. A promising new method of assessing brain activity called “phase-amplitude coupling” will be measured via non-invasive electroencephalogram (EEG) technology.

What will happen during the visit or online?

Both children who do and do not have ASD will be invited to participate in an EEG, play computer games during the EEG, and fill out self-report questionnaires with the help of a trained researcher. Parents of participating children will also fill out related surveys. This study is comprised of two visits spaced out over several months.

How will this help families?

Increased understanding about the mechanisms that underlie atypical social functioning in ASD will allow science to develop targeted, effective assistance for these youth as early as possible.

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 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.

While there have been large-scale genetic analyses of autism spectrum disorder, there have been little efforts to investigate this in Hispanics and Latina/Latino populations (henceforth Latinx), the largest minority population in the United States. Inclusion of under-represented populations in genetic studies is important both for scientific reasons and for equity. The genetic architecture of ASD is complex and ongoing efforts to decipher it have focused on both common and rare genetic variants and investigating whether the genetic architecture differs across ancestral populations is important in order to have informed care and risk factors for underrepresented groups.

What are the goals of the study?

The central purpose of this project is to collect genetic and phenotypic information about childhood psychiatric conditions, with the aim of finding links between core symptoms, cognitive ability, and underlying neurobiological mechanisms. To better understand and investigate the genetic risk for autism spectrum disorder (ASD) in people through observation of its genetic architecture across ancestral populations. Specifically, we aim to further our understanding of ASD in Hispanic/Latinx populations, the largest minority population in the U.S. and an admixed population.

What will happen during the visit or online?

Participating in the study typically requires two in-person visits, one for an autism evaluation and one for IQ testing and DNA Collection. The DNA Collection can either be a blood draw or saliva collection; we collect DNA from the person affected with ASD and two biological family members. Furthermore, there is a zoom interview between a clinician and parent for our children participants and online forms that must be filled out. Families will be compensated $100 and will receive a report of the assessments completed.

How will this help families?

Families will be able to receive a report of all assessments done and receive compensation. Receiving an appointment for an autism evaluation and updated reports can often take several months to years, while here it takes a couple of weeks. Our reports can be often used for school or to apply to additional services. Adding on, our coordinator speaks Spanish which can often aid families that don’t speak English and helps remove that barrier to care. Furthermore, this will help families in the future by investigating risk factors in the development of ASD which can help inform clinical care for diverse populations.

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.

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.

What are the goals of the study?

The CHARGE (CHildhood Autism Risks from the Genetics and the Environment) Study aims to investigate the role of genetics and the environment on the development of children. Launched in 2003 , the CHARGE Study was the first comprehensive study of environmental causes and risk factors for autism and developmental delays. Investigators recognize that there is no single factor accounts for all autism cases, nor is there one event or exposure that can be responsible for the rapid increase in diagnoses over the last few decades. Instead, each child’s path to altered brain development may be different.

What will happen during the visit or online?

Children will complete an EEG recording and complete behavioral assessments. Parents will fill out questionnaire forms. A visit to the UC Davis MIND Institute with your child for developmental testing and a medical exam. Urine, blood, and other samples from your child and immediate family members. Responses to questions about your health, your child’s health and your home environment during the pregnancy and early years of your child’s life. Permission to obtain and review medical records. Permission for study staff to obtain banked blood samples collected when your child was born.

How will this help families?

You will be provided with results of your child’s developmental and behavioral testing.
You may find satisfaction in contributing to research on the causes of Autism and other developmental disabilities.
You will receive information and resources on ways to create a healthy environment for children.

POLO aims to understand variability in autistic children’s language development. POLO aims to identify how motor skills, brain activity, and genetics relate to language in autistic children, especially those who are minimally verbal. POLO aims to identify novel ways to help autistic children develop language and communication skills.

What are the goals of the study?

The main goals of POLO are to investigate how motor skills, brain responses to sounds and speech, and genomic profiles are related to different patterns of language development in children with autism with special emphasis on understanding differences between minimally verbal and more verbal children.

What will happen during the visit or online?

The study requires three visits to Boston University, each lasting about three hours. Some participants are invited to return to our lab for follow-up two more times over the course of a year. Your child will complete several play-based cognitive and language assessments, motor tasks, and saliva-based DNA collection. Your child will also watch fun videos while we record brain activity using a noninvasive technique: EEG. You will complete an interview and fill out several questionnaires about your child’s behavior and development.

How will this help families?

POLO will advance our understanding of factors that are important in language in autism.