Language Use in Autism

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 information we receive from healthy, typically developing children, teens, and adults could help us learn more information about the characteristics associated with 3q29 syndromes. The information we learn from our control group comparison utilizing MRI scans will help us gain insight into how the brain processes social information to 3q29 syndromes that are associated with increased risk for several developmental disabilities. As a token of our appreciation, participates can receive a monetary compensation of $50 for the MRI scans, $15 for MRI training, a souvenir picture of yours or your child’s brain, and feedback about your child’s performance from the clinical assessments.

What are the goals of the study?

This study is part of a larger medical research study to help us learn more about how the brain functions, especially when processing social information. We will do this by using magnetic resonance imaging (MRI). The information we learn from healthy, typically developing individuals will help us to understand the characteristics associated with 3q29 syndromes, which are rare genetic disorders that are associated with increased risk for developmental disabilities including autism, intellectual disability, learning disabilities, epilepsy, and schizophrenia.

What will happen during the visit or online?

The study will take place at the Marcus Autism Center and our imaging center, which is located at Wesley Woods on the Emory Campus. Participants will be asked to receive training on what to expect during an MRI scan, watch videos while resting in the MRI scanner, and receive clinical assessments which involve completing games and activities related to language and thought.

How will this help families?

Our mission is to learn more about 3q29 Deletion Syndrome and 3q29 Duplication Syndrome, and improve the quality of care for individuals with this diagnosis. Because the 3q29 Deletion and 3q29 Duplication are so rare, it is difficult for medical practitioners, families, and individuals to know what to expect. Our goal is to create a resource for families and professionals to address this gap in knowledge.

The Autism Intervention Network for Behavioral Health (AIRB) has set the standard for developing, implementing and evaluating interventions in under-resourced communities, including impoverished schools and communities, and with families from traditionally disenfranchised groups. This study builds on previous AIRB work to investigate methods of sustaining evidence-based practices to support autistic students in schools. Through participating in this study, you will not only be contributing to data that will impact future practices, but you/your child’s educator will also receive free training in evidence based methods to support your autistic student/child.

What are the goals of the study?

To develop and evaluate a multi-phase implementation and sustainment strategy to support evidence-based practice use across different ASD interventions, settings and ages. Objectives (non-exhaustive): Conduct studies in under-resourced settings, test a multi-phase implementation strategy using rigorous scientific methods, and deliver training for evidence-based interventions using remote delivery methods; develop and test tools and resource guidelines to promote access to and sustainability of effective interventions; widely disseminate interventions, tools, and guideline

What will happen during the visit or online?

Participants will be expected to complete a 10-15 minute online survey. The first 100 participants will be award

There are 2 types of participants we are recruiting for this study:

  1. Elementary school level educators/staff:
    Educators will be expected to be matched with at least one elementary aged student that meets the student participation criteria whom they will support at recess throughout the school year. Educators will receive an introduction to Remaking Recess – a social engagement intervention for autistic students and their peers. It covers topics such as assessment, communication, flexibility, and conflict mediation. School staff, such as paraeducators, will be trained to use Remaking Recess and will be provided coaching from trained research personnel. Educators will be asked to fill out surveys at 3 time points during the study – at the start of the school year, at the end of the school year, and at the start of the following school year. Completion of surveys for each time point will be awarded with a $25 gift card.
  2. Elementary aged students with ASD/NDD diagnosis and spend 50% or more of their time in general education:
    Students will receive support at recess from the educator they are paired with in creating social connections, increasing flexibility, improving communication and social skills, and so on. One parent/legal guardian of each student will be asked to complete a survey about their child.

How will this help families?

This study will provide free Remaking Recess training for participating educators at your child’s school. This will help educators understand how to support your child at recess, including facilitating peer interactions, teaching flexibility, and modeling social behaviors. Your student will benefit from the extra training that their educators will receive, and we hope that the skills their educators learn from this study will continue even after the study is over.

Disruptive behaviors impact meaningful engagement in academic tasks and with peers, as well as result in placement in more restrictive settings, higher use of restraint procedures, and suspension, all of which have lasting negative impacts. School-based behavioral management approaches, while effective, are time-consuming and resource-intensive, resulting in high costs and delays in intervention deployment. There is a need for a paradigm shift in the care model for disruptive behaviors in the classroom, specifically an efficient and pragmatic intervention model that builds capacity with direct care providers, which in turn streamlines the intervention process, reduces the need for intensive behavioral supports (thus lowering costs), and increases the number of autistic children who can be served — RUBIES hopes to fulfill this need.

What are the goals of the study?

Our pilot randomized trial seeks to test the effectiveness of and understand how the newly redesigned “RUBIES” Intervention can assist and empower paraeducators in addressing and reducing disruptive behaviors in their elementary autistic students.

What will happen during the visit or online?

After the student is deemed eligible, paraeducators will be randomly assigned to one of two interventions: RUBIES training (delivered live over Zoom with a trained specialist) or Psychoeducation in Autism training (delivered asynchronously through pre-recorded webinars with the option to check-in with a live coach). Each intervention has 8 sessions to be completed over 12 weeks. RUBIES participants will be invited to a semi-structured interview (45-60 minutes), which will be audio recorded and virtually conducted.

How will this help families?

The most accessed service system for autistic children is the public school system. By building capacity with these children’s direct care providers (paraeducators, in the case of RUBIES), our study can help improve the support their children receive in schools. Many paraeducators, who often have the most intimate interaction with these students, are undertrained when it comes to support autistic students – let alone, autistic students when disruptive behaviors arise.