Therapy for Minimally Verbal Autistic Adults

We are inviting autistic adults who have limited verbal communication to participate in a research study that includes 12 weeks of therapy. This would be helpful for people who are struggling with “feeling down”, which can be seen as low or sad mood, change in motivation to participate in activities, and change in sleep. 1-2 people who support the adult would join in the therapy to provide support and learn, as well.

What are the goals of the study?

This study is adapting a mental health treatment for people with intellectual disability to meet the needs of minimally verbal autistic adults.

What will happen during the visit or online?

The participant will complete 12 therapy sessions and assessment visits to check in how they are doing along the way. The 1-2 people who come with them to support and learn will also participate

How will this help families?

This study is about a mental health treatment for minimally verbal autistic adults.

The purpose of this study is to investigate the neural mechanisms associated with visual and social perception in adults with and without autism. Participants complete a 2-hour MRI scan during which they watch a full episode of the BBC show “Sherlock”, a memory recall task which requires them to summarize the episode in their own words, a brief IQ assessment, and five questionnaires. Participants are compensated with a $120 VISA gift card.

What are the goals of the study?

The long-term goal of this research is to understand the neural basis of social interaction perception in controlled and naturalistic contexts, and differences associated with underlying neural mechanisms of autism.

What will happen during the visit or online?

Research appointments at our Center in Baltimore, Maryland are scheduled Monday-Friday. Appointments are approximately four hours. Participants complete a 2-hour MRI scan during which they watch a full episode of the BBC show “Sherlock”, a memory recall task which requires them to summarize the episode in their own words, a brief IQ assessment, and five questionnaires.

How will this help families?

This research will enable clinicians to better understand the neural underpinnings of autism-related symptoms and inform therapies, such as social skills trainings, to more effectively target differences.

We are the TRANSCEND Research Team at Massachusetts General Hospital – thank you so much for your interest in our research! Our research is about how different areas in the brain are connected in autism compared to typically developing individuals, and is entirely non-invasive. We are currently recruiting individuals ages 14-32. The study would involve behavioral assessments, and 1-2 sessions in the MEG, a device that reads brainwaves, and is similar to EEG. We will also determine with you whether an MRI is needed. If so, it will be a very short one – about 10-15 minutes. You can read more about our studies on our website: http://transcend.mgh.harvard.edu/ We reimburse for time at the rate of $30/hr for behavioral assessments, and $70/hr for MRI/MEG visits. We also reimburse for travel expenses such as Uber and Lyft costs (up to $80 per visit) and for parking. Note also that our visit times are flexible, and we will do our best to accommodate your schedule.

What are the goals of the study?

Our research group studies brain development and associated medical conditions in healthy adults and adults with developmental disorders such as autism, an autism spectrum disorder, language impairments, attention deficit disorders, or sensory processing disorders, including misophonia. Specifically, we are trying to understand how sensory information (sight, hearing, and touch) is processed in the brain of an individual with autism spectrum or other developmental disorders as compared to a healthy individual.

What will happen during the visit or online?

The study would involve behavioral assessments, and 1-2 sessions in the MEG, a device that reads brainwaves, and is similar to EEG. We will also determine with you whether an MRI is needed. If so, it will be a very short one – about 10-15 minutes. If you self-identify as having misophonia, we will ask you to get a comprehensive audiology exam at the Mass Eye and Ear Audiology clinic affiliated with MGH, to rule out other potential auditory processing disorders.

How will this help families?

There is no direct benefit to the subject for participating in the research. We hope that the information gathered in our studies will aid in the identification, understanding, and treatment of autism.

RAYS, a Brown University research study, is aimed at studying the outcomes and development of autistic teens and young adults aged 12-24 as they navigate adolescence to early adulthood.

What are the goals of the study?

The goal of RAYS is to examine the challenges and problems that adolescents and young adults on the autism spectrum experience over the course of adolescence and young adulthood, especially their exposure to alcohol and other drugs.

What will happen during the visit or online?

Participation involves 4 interviews over 3 years, each one year apart after the initial assessment. The study consists mainly of interviews and filling out questionnaires on mood, behavior, alcohol and other drug use, and relationships with family and friends. Teens/young adults can earn up to $395 for participating over the course of the study and parents/guardians can earn up to $225. All visits can be done remotely or in-person. The length of the visits vary by timepoint. Our baseline assessment generally takes 3-4 hours, T2 takes about one hour, T3 takes about 3 hours and T4 takes about one hour. All assessments can be broken up into multiple sessions if needed or completed in one sitting – we leave it up to the participant. If a participant is over 18 years old, their parent/guardian does not need to participate in order for the young adult to participate. If their parent/guardian would like to join the study at a later point, we will try to accommodate enrolling them. 

How will this help families?

This study can help researchers better understand the experiences of adolescents and young adults on the autism spectrum.

Researchers in the Vanderbilt University Medical Center department of hearing and speech sciences are running a study to better understand why some autistic people are more sensitive to everyday sounds than others and how this relates to the way the brain processes sound.

What are the goals of the study?

Although they are not frequently diagnosed, sound sensitivity disorders, including hyperacusis, misophonia, and phonophobia, are extremely common in the autistic population. The purpose of the current research study is to compare and contrast people with and without these different sound sensitivity syndromes in terms of their clinical symptoms, hearing, brain function, and mental health. By examining a group of adults with ALL levels and types of sound sensitivity (including no sound sensitivity at all), we hope to answer fundamental questions about the nature of sound sensitivity and improve the ways in which clinicians diagnose and assess patients with this common complaint.

What will happen during the visit or online?

Study participants will be asked to complete some online questionnaires and come to Vanderbilt for up to two in-person sessions. The first in-person session includes psychoacoustic (hearing) tests, interviews, and standardized psychological assessments. After that session, you may qualify for a second session that will include more hearing tests, brainwave recordings (EEG), and other measures of auditory function. There are no anticipated risks to you, and you may not benefit directly from your participation in this study, though you will have the opportunity to request a report of your study results. Following a screening questionnaire (approximately 10–15 minutes), there are two visits to the laboratory (each lasting approximately 3-5 hours) and two groups of online questionnaires (approximately 20–40 minutes each).

How will this help families?

Currently, research on autism and sound sensitivity has been limited to primarily descriptive studies of prevalence, and there is very little understanding of underlying mechanisms, let alone any evidence-based diagnostic or treatment strategies. This work will be foundational in advancing our knowledge of this problem and its underlying causes in the autistic population, which can hopefully lead the way toward better clinical care for autistic people who experience sound sensitivity in their everyday lives.

Stanford University is recruiting children with autism spectrum disorder (ASD) for a research study looking at the parts of the brain that may underlie some restricted and repetitive behaviors (RRB) in children with ASD using N-acetylcysteine (NAC), an over-the-counter dietary supplement. We will use MRI and EEG to determine what changes in the brain may be related to change in RRB severity.

What are the goals of the study?

We hope to learn the mechanisms in the brain through which NAC may be able to alter the severity of RRB in children with ASD and examine whether it might be able to reduce the severity of some of RRB symptoms. We also hope to determine how NAC is able to affect RRB symptoms in children with ASD and what changes in the brain may be related to change in RRB severity.

What will happen during the visit or online?

complete cognitive and behavioral assessments (such as IQ testing)
attempt an MRI and EEG scan
drink N-acetyl cysteine dissolved in water for a total of 12-week period

How will this help families?

Potential benefits include monitored access to utilize NAC, which cannot necessarily be considered treatment for any specific condition in children with ASD at this time. It is also likely that the knowledge gained from this study may generally contribute to better treatment options for children with ASD more broadly.

Post-pandemic, so much healthcare-related assessment is taking place remotely. This can be much more convenient for families with a child who has a complex neurodevelopmental disorder, but we need to know how the information from a remote assessment compares to an in-person one. This project aims to do just that: compare how a child performs on a series of speech, language, and motor assessments in our lab and remotely, at home. We hypothesize that children will perform at least as well when they are in a familiar place like their home.

What are the goals of the study?

This project aims to validate a remote assessment protocol for spoken language and motor skills against the same data collected in person. The purpose is to understand the relationship of scores derived from the tasks when administered in person and via Zoom.

What will happen during the visit or online?

Children with neurodevelopmental or genetic diagnoses between the ages of 2 and 18 are welcome to participate. Families will come to the Motor Development Lab at Boston University for a 2-hour in-person visit where children will participate in a series of motor and spoken-language assessments. Motor assessments will include walking back and forth on our “magic carpet”, which records each of their footsteps, playing a “flamingo game” by balancing on one leg, and putting coins into a piggy bank. Spoken language assessments will include watching a preferred video while we record children’s facial movements, attempting to repeat a set of 8 syllables, a picture-naming task, and trying some tongue-twisters. The specific spoken-language tasks for each child will be selected based on their verbal ability, so everyone has a just-right challenge. The in-person and remote assessments will be audio- and videotaped for later analysis.

At the end of the in-person assessment, families will receive $25, and we’ll make two Zoom appointments. One will be for parents to complete a set of questionnaires about their child’s history and current skills, and the other will be to complete the same spoken-language and motor tasks they just finished at home, via Zoom. Once the two remote sessions are complete, families will receive another $75 and a personalized report if they would like. Parking will be free for the in-person session.

How will this help families?

To create a data set that will help us find potential predictors of spoken language outcomes in children with neurodevelopmental (including autism) and genetic disorders, we need a highly reproducible, validated assessment protocol that can be used with children no matter what their diagnosis. The protocol must be able to be administered remotely as well as in person, because many children with these conditions do not live within easy travel distance of a clinical center and multiple in-person visits are impractical for families due to their already busy rehabilitation schedules. Valid remote assessment reduces the burden of participation in assessments and research studies for families who live in rural areas or lack the ability to take time off from work and spend money on long trips.

Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by deficits in social communication and social interaction and restricted, repetitive patterns of behavior. Given the lack of specific pharmacological therapy for ASD and the clinical heterogeneity of the disorder, researchers at The Johnson Center and the University of Texas Southwestern are undertaking an ASD biomarker study with the goal of identifying biomarkers for determining ASD risk and developing potential therapeutic interventions.

This study may help with identifying ASD risk in very young children so that interventions and therapies can begin as early as possible – this is critical for ensuring the best developmental outcome. We will use machine learning (AI) to identify therapeutic targets that may help with addressing ASD-specific behaviors.

What are the goals of the study?

The purpose of this study is to identify biomarkers of ASD that correlate with behavioral and developmental phenotypes in order to:
1) develop and test biomarker profiles that form a diagnostics tool;
2) screen and identify children with ASD who might benefit from specific interventions; and 3) develop and test biomarker profiles that inform an instrument for monitoring therapeutic response to medical interventions; and improve the clinical well-being of affected children and increase our knowledge base of this disorder.

What will happen during the visit or online?

Your participation will require two parts:

i) Completion of 4 online questionnaires that can be done from home.

ii) Visiting a Lab Service Center, such as Quest, Lab Corp or CPL, near your home for your child to give a small blood sample.

Compensation of $125 is provided upon completion of the study.

How will this help families?

The biomarkers we identify may assist in the development of therapeutic interventions for targeted treatments for autism.

This research study aims to find out more about adults with autism spectrum disorder, including how adults with autism think, how their brains work, and how these things change as they get older.

What are the goals of the study?

The main goal of the study is to understand the aging process in people with autism.

What will happen during the visit or online?

The study involves autism diagnostic evaluation at the SDSU Center for Autism, and a neuropsychological battery testing the individual’s memory, attention span, and other cognitive skills. Participants are also asked to undergo an MRI scan at the SDSU Imaging Center, which allows us to collect information about the brain anatomy and function. Because we are aiming to understand how people with autism age, we hope to repeat this evaluation in about 3-5 years, inviting participants to return for another scan and a set of assessments.

How will this help families?

Participants in this study report that they learn important information about their memory and other cognitive abilities from participating in the study. Broadly, the results of this study should help us understand how people with autism age – something that has not been studied nor well understood thus far.

Six-to-ten year old children with autism spectrum disorders are invited to participate in a fun study, which involves wearing an actigraphy watch for two weeks (to estimate the quality and other characteristics of the child’s sleep) and participation in one MRI session at SDSU Imaging Center. Both children and parents are asked to keep sleep diaries for the two weeks when the child is wearing the actigraphy watch. Finally, children are asked to take part in a brief cognitive testing session. The study aims to understand the links between sleep (problems) and brain development in children with autism.

What are the goals of the study?

This study aims to understand potential mechanisms underlying sleep disturbances in autism.

What will happen during the visit or online?

Children will be asked to wear an actigraphy watch for two weeks, keep sleep diaries, take part in one MRI scan, and complete a brief behavioral assessment session.

How will this help families?

Sleep problems affect 50-80% of individuals with autism and can have cascading effects on development, everyday function, and quality of life. However, the mechanisms underlying sleep disturbances in ASD are not understood. A better insight into the potential mechanisms of sleep disturbances in autism may ultimately help with developing new treatments targeting sleep in children with autism.

In this study, we will present a series of validated eye tracking paradigms (e.g., images of faces, videos of social interactions) while we monitor eye movements and physiological arousal. Two research assistants will also collect behavioral reports of ASD and ADHD symptoms from 8-12 years old participants. These data will allow us to examine how and if eye movements, arousal, and questionnaire outcomes differ between children with ASD and ADHD. By combining eye tracking/arousal measures and behavioral assessments, we will then draft a map of how these social cognitive traits manifest in eye movements.

What are the goals of the study?

The primary aim of this study is to test the utility of a social cognitive battery incorporating psychophysiological measures to differentiate between autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD).

What will happen during the visit or online?

A brief telephone screening will be conducted to determine if the child and family are interested in the study. Then, a research team member will schedule a time for the family to come into the lab for approximately 90 minutes. Prior to the visit, parents will be asked to send a copy of a recent diagnostic assessment to confirm diagnosis. During the visit, the participant will come to our lab with their parent. Upon completion of the consent and assent, cognitive screener will be conducted first to the child and then the eye tracking tasks will be administered using the Eyelink 1000. We will ask the child to sit in front of a computer screen, and we will be showing the child some videos and images while the computer will track the child’s physiological response and their eye movements. Parent and caregivers will complete a few questionnaires by the time. Upon completion of all measures, the participant will be given a $20 gift card for their time.

How will this help families?

Families will receive a feedback summary compiling information regarding their responses on questionnaires, including the Conners, SRS, and CBCL. Families will learn about their children’s current condition in behavior performances and cognitive development. If requested by contacting the lab via phone or email (or indicating during the study visit), a 15 minute phone feedback session will be scheduled for the parents with the PI, clinical psychologist, to discuss the results from the questionnaires. This will also offer the PI a chance to address any other questions the parents may have. Participants will also be compensated $20 for their time.

This pediatric autism clinical research study is currently testing the drug, pimavanserin, to see if it is safe and effective in treating irritability and other behaviors in children and adolescents with autism spectrum disorder (ASD). Study participation will last for up to 14 weeks, with a 6-week treatment period. Children who enroll in this study will receive either the study drug or placebo. A placebo looks like the study drug but has no impact on the person taking it. There will be no cost for the study drug or any study-related procedures. You may be compensated for your time and travel. If your child completes the 6-week treatment period, they may be able to enroll in a 52-week, open-label extension study if they qualify. During this open-label study, there is no placebo. Children who enroll will receive the study drug, pimavanserin.

What are the goals of the study?

The overall goal of this study is to evaluate whether an investigational drug might help relieve irritable behaviors associated with Pediatric Autism Spectrum Disorder that make social interactions and everyday functioning challenging.

What will happen during the visit or online?

Study participation will last for up to 14 weeks, with a 6-week treatment period. Children who enroll in this study will receive either the study drug or placebo. A placebo looks like the study drug but has no impact on the person taking it. There will be no cost for the study drug or any study-related procedures. You may be compensated for your time and travel.
If your child completes the 6-week treatment period, they may be able to enroll in a 52-week, open-label extension study if they qualify. During this open-label study, there is no placebo. Children who enroll will receive the study drug, pimavanserin.

How will this help families?

The evaluation of this investigational drug may help relieve irritable behaviors associated with Pediatric Autism Spectrum Disorder that make social interactions and everyday functioning challenging.