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Autoimmune Disorders in Relatives of Adults with ASD

Study Site: MGH Lurie Center for Autism

Participation: Remote/Online Study

Dates: 03/03/2024 - 02/01/2027

The purpose of this study is to better understand the relationship between autism spectrum disorder (ASD), the immune system, and autoimmune conditions. We are investigating whether autoimmune disorders occur more frequently in autistic adults and their biological family members and whether immune-related factors may help identify clinically meaningful subgroups within autism. Participation includes informed consent, questionnaires about medical history, autoimmune conditions, behavior, and autism-related characteristics, intelligence and language assessments, and a blood sample to measure markers related to immune function and inflammation. Biological family members may also complete a questionnaire about their own medical and autoimmune history. The study can be completed remotely. Assessments may be completed at the Lurie Center or remotely when appropriate, and blood samples can be collected at the Lurie Center, another Mass General Brigham location, or through mobile phlebotomy at the participant’s home when available.

Characterizing sleep physiology in ASD

Study Site: Massachusetts General Hospital; contact [email protected]

Participation: Remote/Online Study

Dates: 06/24/2026 - 06/24/2027

The fully remote option of this study is for your child to wear a comfortable sleep headband for 3 nights (at home) to measure brain activity during sleep. If needed, your child may have an optional 1–2 week practice period to become comfortable wearing the headband before the study nights begin. Caregivers will complete a brief sleep diary and questionnaires with the research team throughout the study. Families may also choose to participate in up to two optional in-person visits at the Lurie Center for Autism in Lexington, MA. During these visits, your child will wear an EEG cap while listening to simple tones and clicks so we can measure brain activity. These in-person visits are completely optional and are not required to participate in the at-home portion of the study.

Exploring Experiences with Medical Trauma and Restraint Use in Autistic Individuals

Study Site: Emory University; contact Maggie Faucett at [email protected]

Participation: Remote/Online Study

Dates: 09/28/2026 - 01/04/2027

This study will interview autistic adults (18yrs +) or caregivers of autistic individuals (13yrs+) about their experiences of feeling overwhelmed in a hospital or doctor's office, especially when it led to a behavioral or mental health escalation or traumatic experience. We will also ask about any experiences of being physically restrained (for example, being held by someone or having a device used to limit movement) in a healthcare setting. The interviews will be approx. 60 minutes and will be completed virtually on Zoom.

Exploring Perspectives on Behavior Labels: A Survey of Autistic Individuals and Their Caregivers

Study Site: The University of Texas at San Antonio

Participation: Remote/Online Study

Dates: 10/31/2025 - 12/12/2026

The goal of this study is to better understand how autistic individuals and caregivers perceive different terms used to describe behaviors such as aggression, self-injury, and property destruction. Participants will take part in an individual interview conducted through Zoom. During the interview, the researcher will guide participants through an online survey that asks about their experiences with these behaviors and their perspectives on the acceptability and clarity of commonly used behavior labels. Participants will have the opportunity to provide additional feedback about the terminology. The findings may help inform how researchers and clinicians describe these behaviors and communicate with autistic individuals and their families. Participation involves one Zoom interview and is expected to take approximately 20 minutes.

Exploring the Experiences of Adult Siblings of Autistic Individuals and/or Smith-Magenis Syndrome

Study Site: Vanderbilt University/Vanderbilt University Medical Center

Participation: Remote/Online Study

Dates: 07/20/2026 - 12/31/2026

Family members of autistic adults and/or adults with Smith-Magenis syndrome with challenging behaviors report experiencing some challenges (e.g., trauma) and benefits (e.g., greater empathy) due to their familial experiences. Even in light of these mixed outcomes, family members also report struggling to fulfill caregiving roles. By understanding the experiences of these siblings, we can help identify ways to meet the needs of all family members. This phase of the study involves a survey of adult siblings that should take approximately 20 to 30 minutes.

How Should We Measure Autistic Adult Well-Being? A Preliminary Study

Study Site: Rutgers University; contact [email protected]

Participation: Remote/Online Study

Dates: 07/06/2026 - 12/31/2026

Researchers at Rutgers University are developing a new measure of well-being for autistic adults across the full range of support needs, including adults with profound autism. Participants will complete a one-time remote interview lasting approximately 60–90 minutes via Zoom. During the interview, caregivers will review draft questionnaire items and provide feedback on their clarity, relevance, and appropriateness for measuring well-being in autistic adults with high support needs. Participants will be compensated for their time and effort.

Investigating Mechanisms Underlying Perceptual Integration in Autism

Study Site: Boston University; contact [email protected]

Participation: Remote/Online Study

Dates: 11/21/2024 - 11/20/2027

Our study examines sensory processing and decision-making in individuals with ASD, including Phelan-McDermid syndrome and profound autism. Participation consists of completing several online caregiver/participant surveys (approximately 30 minutes to 1 hour total) and participating in an online video game task conducted over Zoom (approximately 10–50 minutes depending on the game version and participant experience). During the game task, participants respond to visual stimuli while researchers study patterns of sensory perception and decision-making. All study activities are conducted remotely/online. Participants who complete both the surveys and game session will receive $50 compensation in the form of an online gift card.

Investigating the Brain's Response to Language in Those with Profound Autism.

Study Site: Albert Einstein College of Medicine; contact [email protected]

Region: Northeast USA (ME, MA, NH, VT, RI, PA, MD, CT, NY, NJ )

Participation: In-person participation required

Dates: 04/03/2026 - 12/31/2026

This study aims to better understand how the brains of children with autism process speech and other sounds. We are especially interested in learning more about children who use few or no spoken words, a group that has been underrepresented in brain research. What we learn may help guide more personalized communication and intervention approaches in the future. Children will visit the lab and wear a comfortable EEG cap that records brain activity non-invasively. While wearing the cap, they will watch age-appropriate videos and listen to a variety of sounds, including simple tones, speech sounds, and spoken stories. No speaking or active responses are required. The study is designed to be low-stress, and breaks are provided as needed. Participation may take place in one or more sessions, depending on the child’s comfort. The full study session could take up to 4 hours, but can be split up if needed. The child will also undergo some simple cognitive testing while in session.

Investigating the Brain’s Response to Language in those with Profound Autism

Study Site: The Cognitive Neurophysiology Lab

Participation: In-person participation required

Dates: 08/01/2025 - 09/30/2028

The Minimally Verbal Autism (MVA) Study examines how children with autism process auditory and other sensory information using noninvasive electroencephalography (EEG). Participants wear a soft EEG cap that records brain activity while they listen to sounds and complete or passively participate in research tasks. The study also includes standardized assessments of communication, cognition, adaptive functioning, autism characteristics, and sensory processing, as well as caregiver interviews and questionnaires. Participation is typically completed across 2–3 visits, with visits lasting approximately 1–4 hours depending on the child’s needs and tolerance.

Join SPARK: The Largest Autism Research Study in the U.S.

Study Site: Join Online

Participation: Remote/Online Study

Dates: 04/21/2016 - 01/01/0001

The Simons Foundation Powering Autism Research for Knowledge("SPARK") is a landmark online research initiative funded by the Simons Foundation Autism Research Initiative (SFARI). SPARK’s mission is to speed up research and advance our understanding of autism to improve lives. How It Works *Register Online: Create a secure account and complete basic behavioral and medical histories. *Provide DNA (Optional): Receive a saliva collection kit by mail to complete entirely from home. *Stay Connected: Access a personalized dashboard with customized research updates and resources. *Contact Information & How to Apply: ---Apply Online: Visit the official SPARK for Autism Registration Portal. ---Email Support: Send questions to [email protected]. ---Phone Support: Call toll-free at 1-844-54-SPARK (1-844-547-7275).

Randomized controlled trial of propranolol for aggression, self-injury and severe disruptive behavior in adolescents and adults with autism

Study Site: Center for Autism and the Developing Brain and Institute for Basic Research; contact [email protected]

Region: Northeast USA (ME, MA, NH, VT, RI, PA, MD, CT, NY, NJ )

Participation: In-person participation required

Dates: 01/30/2026 - 12/31/2028

This is a medication study to evaluate whether a medication called propranolol can help reduce challenging behaviors in individuals with autism. Participation in this study may last up to 26 weeks (~6 months) and includes only 1-2 in-person visits to White Plains, NY or Staten Island, NY. In-person visits may be completed in the participant’s place of residence if needed. These visits will last 4-5 hours and can be split into multiple days. Study procedures will include medical and behavioral assessments including home blood pressure checks, EKGs and Holter monitor (a small wearable device that records heart activity). Ongoing weekly virtual visits with the study team may last up to 1 hour. Compensation will be provided for all study visits. Any travel, lodging, and meal expenses for the in-person site visits will be reimbursed.

Randomized, Double-Blind, Placebo-Controlled, Parallel-Groups Trial of Prednisone in Adults with an Immune-Mediated Subtype of Autism Spectrum Disorder (PREDICT)

Study Site: MGH Lurie Center for Autism

Region: Northeast USA (ME, MA, NH, VT, RI, PA, MD, CT, NY, NJ )

Participation: In-person participation required

Dates: 08/01/2026 - 01/01/2028

The purpose of this study is to evaluate whether prednisone, an anti-inflammatory medication, affects the core features and associated symptoms of autism spectrum disorder (ASD) in autistic adult males compared with placebo. The study will also assess the safety and tolerability of prednisone in this population. By conducting this study, we hope to better understand the potential role of inflammation in ASD and whether targeting immune-related mechanisms may benefit some autistic adults. Participants will complete screening procedures, including a review of medical and psychiatric history, a physical examination, laboratory testing, an electrocardiogram (ECG), and behavioral assessments. Eligible participants will be randomly assigned to receive either prednisone or placebo. Throughout the study, participants and their study partners will complete questionnaires and behavioral assessments, track study medication use and potential side effects, and attend both in-person and remote study visits. Participants will be enrolled in the study for approximately 20 weeks, including screening and baseline visits, 16 weeks of treatment, and a 4-week follow-up period. Five visits will take place in person at the Lurie Center for Autism, and eight visits will be conducted remotely. In-person visits will last approximately 1.5 to 4.5 hours, while remote visits will last approximately 30 minutes.

SAFE-AID: Self-injury and Aggression Functional Evaluation for People with Autism and Intellectual Disabilities

Study Site: York University

Participation: Remote/Online Study

Dates: 12/04/2025 - 12/04/2026

The goal of our study is to test a measure that can be completed by parents and care workers of people with profound autism or intellectual disabilities. This measure is designed to assess the frequency, severity, and potential causes of aggressive and self-injurious behaviors. The end goal is to validate our measure and allow it to be used by researchers and clinicians free of charge. Our study is completed entirely online and involves completing our measure as well as two other similar measures for validation purposes. The total time committent is approximately 20 minutes for completion of all the materials. Online consent is completed at the start of our survey and all data collected is anonymous.

SPARK

Study Site: Yale Child Study Center

Region: Northeast USA (ME, MA, NH, VT, RI, PA, MD, CT, NY, NJ )

Participation: Remote/Online Study

Dates: 03/01/2024 - 12/31/2027

SPARK is an autism research study and a growing community of autistic individuals, their families, and researchers on a mission to advance the understanding of autism. SPARK’s mission is to improve the lives of people with autism by identifying the causes of autism and informing more effective therapies, treatments, services, and supports.

The Neurodiversity Paradigm: Perspectives from Autistic Individuals

Study Site: Illinois Institute of Technology; contact [email protected]

Participation: Remote/Online Study

Dates: 02/17/2026 - 12/31/2026

The Illinois Institute of Technology is conducting this study to better understand the attitudes that autistic individuals have towards the different theories about autism spectrum disorder and neurodiversity that exist in society. It aims to gather this information via qualitative interview, seeking perspectives directly from autistic individuals. This study involves an audio-recorded virtual interview with Tiona Wu, BA either independently or by caregiver proxy. The interview requires a participation commitment of approximately 1 hour. The target number for enrollment is 8-12 participants, across a range of high and low support needs.