The goal of this project is to establish how our current professional understanding of autism matches with and/or clashes with social media depictions of autism, so that (1) clinicians understand how online experiences might impact their patients’ conceptions about autism, and perhaps themselves, and so that (2) consumers of social media have guidance as they seek information. The study team is made up of Seaver Autism Center researchers, and we decided to put together this project after hearing from our participants and seeing for ourselves the wide range of autism-related content on TikTok.
What are the goals of the study?
We are looking into how people feel about current social media perceptions of Autism. Everyone’s feeds are different and everyone’s relationship with ASD is different, so we want to gather information from people with different perspectives and report back so everyone can enjoy their feeds with a little more big-picture understanding of the strengths and dangers of this content. We also want to have autism professionals weigh in on autism symptoms mentioned in top-performing videos, so the general public can have some guidance on what symptoms are more or less related to autism.
What will happen during the visit or online?
You will fill out an anonymous survey that will take anywhere between 2 and 10 minutes.
How will this help families?
Representation is so important. With over a billion users worldwide, TikTok has a tremendous impact on the way outsiders and people in the autism community are thinking about autism. The study team hopes that this study can provide more context and guidance for content consumers.
This study, conducted by researchers at the University of Washington, aims to redesign and pilot test an evidence-based family intervention (RUBI) for autism and behaviors that interfere with quality of life and self-determination in partnership with autistic adults, their caregivers, and their providers to ensure that the redesigned intervention is appropriate and effective for this community. We believe this study is important because autistic adults and their families are currently the most underserved population of autistic individuals. Additionally, the Autistic Self Advocacy Network recently called for increased work to help autistic adults with challenging behaviors and their supporters. We hope that this study can help make progress toward meeting this need for the autistic community.
What are the goals of the study?
In partnership with autistic individuals, their caregivers, and their providers, we hope to redesign an intervention for families of adults with autism and behaviors that interfere with their quality of life. We also hope to test the redesign intervention with ten families to ensure the redesigned intervention is feasible and appropriate for families.
What will happen during the visit or online?
There are two phases to this study:
For Phase 1, we are looking to recruit autistic adults, caregivers of autistic adults, and providers who service autistic adults. Focus group members will be asked to review materials about an established intervention for families of autistic children and answer questions in a 2 hour focus group regarding the applicability of the intervention for adults and suggestions for improving fit with families of autistic adults. Participants in Phase 1 will also be asked to fill out short surveys about the intervention during the focus groups. Participants will be compensated $100 for participating in focus groups.
For Phase 2, we are looking to recruit autistic adults and their caregivers to pilot the redesigned intervention. Families will be asked to attend 8-10 weeks of intervention (1 hour/week) at a time that is convenient for them. They will also be asked to fill out surveys about themselves and the intervention 4 times throughout the intervention. Participants will each be compensated $25 for each set of surveys.
How will this help families?
Currently, autistic adults and their families report having an extremely hard time accessing services. We hope that by redesigning a short term, evidence-based intervention for autistic adults with behaviors that interfere with their quality of life and their families, we can help expand access to this service and give autistic adults and their families tools to improve self-determination and quality of life.
Discoveries of new genetic causes of autism spectrum and other neurodevelopmental disorders is an important first step. However, individuals with newly uncovered diseases face challenging questions that require further research to improve diagnosis, prognosis, and therapeutics. Example of genes under investigation include EBF3, EIF2AK1, EIF2AK2, STXBP1.
What are the goals of the study?
Improve knowledge of the genetic basis, mechanistic determinants, range of outcomes and advance clinical knowledge for newly diagnosed autism spectrum and other related neurodevelopmental disorders uncovered by the efforts of the Undiagnosed Diseases Network and other genomic studies at the Duncan Neurological Research Institute and Baylor College of Medicine. Objectives include defining diagnostic criteria, understanding the natural history, facilitating prognosis, establishing a biorepository, and investigating genetic and genomic alterations.
What will happen during the visit or online?
(1) Providing demographics and medical record information. (2) Blood samples will be obtained from the patient as well as the parent and healthy siblings. In some cases, based on the preference of the family, saliva samples may be obtained rather than blood for DNA studies. (3) Skin biopsy to establish fibroblasts for functional and genetic studies. (4) Depending on the genetic alteration, participants may be eligible for remote neuropsychology surveys, in person neuropsychology and autism assessments, and in person brain MRIs.
How will this help families?
The research studies may improve the interpretation of DNA variants in autism spectrum disorders, confirm the diagnosis or carrier status of disease, help provide a better understanding and management of the disease in the family, and better understanding of the genetics of the disorder with better information about its inheritance or natural history. The information which will become available about these disorders may be important to the diagnosis of others and development of new treatments.
