Development of the M-CHAT-S, a school-age extension of the Modified Checklist for Autism in Toddlers

Researchers at the AJ Drexel Autism Institute are developing a new screening tool to identify young children on the autism spectrum who might have been missed by toddler-age screening. We are inviting parents and educators of children ages 4-8 to participate.

What are the goals of the study?

We are creating a new screener for elementary-school children whose autism might still be diagnosed. This study is to test how well that screener is working, with children who have already been diagnosed with autism. We are seeking both parents AND EDUCATORS of children ages 4-8.

What will happen during the visit or online?

Participants will complete an online screening questionnaire (5 minutes). If they are eligible, someone from our research team will reach out to share the full study. The full study is a series of online questionnaires (45-60 minutes). Those who complete the full study will be compensated with $50.

How will this help families?

Many autistic children enter elementary school without their diagnosis being identified. This means that they do not get access to services and supports to which they would otherwise be legally entitled. The current project seeks to develop and implement new strategies for identifying children who may have been missed.

Researchers at Rutgers University are conducting a research study to evaluate a 10-session telehealth-based group therapy program.

What are the goals of the study?

The purpose of this study is to evaluate the feasibility, acceptability and effectiveness of an adapted telehealth Group Behavioral Activation Therapy (GBAT+) for autistic adults. GBAT+ is intended to help adults manage stress, anxiety, low moods, and anger.

What will happen during the visit or online?

Eligible people will be asked to complete questionnaires, 7 individual assessment visits, 5 brief check ins, and 10 group therapy sessions.

How will this help families?

Participants will receive 10 group therapy sessions and be compensated up to $345 for completion of assessments.

Many new parents/guardians of children first diagnosed with autism often feel anxiety about their child’s future. Many of these parents and guardians have lots of questions, such as, “Will my child be able to finish his education? Will my child be able to make friends? Will my child be able to live independently?” etc., which may possibly especially cause increased anxiety if these parents and guardians do not have the proper perceived social support that may be able to help them along the way. This in turn may affect the way these children are parented and raised and can make a great difference in the children’s lives.

What are the goals of the study?

To determine the relationship between perceived social support and future anxiety among Hispanic guardians of a child (2-18-years-old) diagnosed with autism spectrum disorder (ASD) residing in the United States

What will happen during the visit or online?

30-60 minutes of participation for the online assessment.

How will this help families?

Participants may benefit from being validated about their experiences with their child who has recently been diagnosed with ASD and will receive resources for support as needed.

This study is examining whether a non-invasive device called vagus nerve stimulator (VNS) improves symptoms related to intellectual and developmental disability (IDD) and/or autism spectrum disorder (ASD). VNS involves applying mild electrical stimulation through the skin around the neck. The vagus nerve sends communications between the brain and many parts of the body. It regulates many cognitive, emotional and bodily functions. VNS is FDA-approved for headaches in people 12-years and older.

What are the goals of the study?

The purpose of the study is to examine whether a device called vagus nerve stimulator (VNS) can help with autonomic symptoms commonly seen in developmental disabilities, including autism.

What will happen during the visit or online?

The participant will undergo several behavioral, neurocognitive, and EEG tests and attend regularly scheduled study appointments. The study duration will be between 9-11 months, which includes 1, 3, 6-month follow-up appointments.

How will this help families?

Possible improvements in some symptoms related to developmental disabilities and ASD with the use of VNS.

Emotion dysregulation (ED) in autism spectrum disorder (ASD) exacerbates social impairment, increases risk for psychiatric and behavioral problems, and often leads to polypharmacy, crisis interventions, and high rates of suicidality. Effective treatment of ED could greatly reduce morbidity and costs and significantly improve quality of life for individuals with ASD. The Emotion Dysregulation Inventory (EDI) is a caregiver report for children ages 6-17 years old that measures rapidly escalating, intense, and poorly regulated negative emotion and dysphoria. However, there are no existing self-report measures of ED validated in adolescents and adults with ASD. Currently, best practice for assessment of emotional and behavioral constructs in ASD is the use of multiple reporters, but this approach is more challenging for adults with ASD when a parent is no longer available or as involved in daily life. Although adults are the fastest growing segment of the ASD population, there has been limited treatment research focused on adults. The EDI-SR would be the first self-report of ED in ASD. It will be developed through a systematic item refinement process to ensure validity, thereby generating a new opportunity to incorporate patient-reported experiences and outcomes in an overlooked and growing group of adults with ASD. The availability of validated self-report of ED is particularly crucial to address gaps in evidence-based treatment for adults with ASD. Dr. Carla A. Mazefsky at the University of Pittsburgh is conducting this research study.

What are the goals of the study?

With this project, we aim to develop and validate a change-sensitive self-report measure of ED for adolescents and adults with ASD, called the Emotion Dysregulation Inventory-Self-Report (EDI-SR).

What will happen during the visit or online?

This study will occur entirely online and will take less than an hour for participants to complete. Participants will be able to pause and resume the questionnaires at any point. They will be paid $75 for completion of surveys. There are no travel requirements. Overall, it is low burden study. Participants may be invited back 4 weeks later for a single survey re-test for an additional $10.

How will this help families?

Although adults are the fastest growing segment of the ASD population, there has been limited treatment research focused on adults. Support for ED is a major unaddressed need for adults with ASD. Studies consistently identify ED as one of the top barriers in college, and adults with ASD and their parents identify mental health as a top priority for research. Therefore, the availability of validated self-report of ED is particularly crucial to address gaps in evidence-based treatment for adults with ASD.

Researchers in Baltimore, MD at Johns Hopkins University and Kennedy Krieger Institute are interested in investigating the underlying neural mechanisms associated with perceiving social interactions. We are recruiting adults (ages 18-35 years) with and without autism. Participation in this study includes a 90–120-minute MRI scan, a 10-minute recall task, a 30-minute IQ assessment, and six questionnaires. Participants with autism will also be asked to complete a 1-hour interview. Participants will be compensated with a $60 VISA gift card at the end of their research appointment.

What are the goals of the study?

The purpose of this study is to investigate the feeding difficulties of infants who are later diagnosed with autism compared to their neurotypical sibling to identify any feeding characteristics that would warrant increased monitoring for autism in infancy.

What will happen during the visit or online?

Completion of a 90-120-minute MRI scan, brief questionnaires, 10-minute recall task and 30-minute IQ assessment

How will this help families?

We are investigating the neural mechanisms underlying perceptions of social interactions which will enable researchers to develop better informed therapies and trainings focused on social skills acquisition

A nursing PhD student at Vanderbilt University is looking for mothers of children with Autism Spectrum Disorder to share their experiences they had in feeding their child at the ages of 0-12 months. Feeding difficulties have been identified in older children with autism but few studies have looked at the feeding difficulties children with autism have before the age of 2 years old. Identifying infant feeding difficulties in autism may help with surveillance for earlier diagnosis and to better support mothers who are experiencing difficulties feeding their infant.

What are the goals of the study?

The purpose of this study is to investigate the feeding difficulties of infants who are later diagnosed with autism compared to their neurotypical sibling to identify any feeding characteristics that would warrant increased monitoring for autism in infancy.

What will happen during the visit or online?

One 30-45 minute online interview with a follow-up phone call or email if any additional information or clarification is needed regarding the information obtained in the interview. Participants will receive a $25 gift card for their time.

How will this help families?

This study may help inform better ways primary care providers (PCPs) ask questions at well child visits to identify infants that are experiencing feeding difficulties, improve PCP surveillance for neurodevelopmental delays in infants by assessing feeding, and improve PCP support for mothers experiencing difficulty feeding their infants.

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.

An eye-tracking study to learn more about how Spanish-English bilingual adults with autism process language in real time. Participants will complete questionnaires, language proficiency tasks, and computer-based tasks — responding with button presses on the keyboard while their eye movements are tracked. The study will take one hour over one session. Given the large number of bilinguals both worldwide and in the US, this study aims to shed light on the important question of how language skills in ASD impacted by speaking another language.

What are the goals of the study?

We hope to better understand how Spanish-English bilingual adults with autism process language in real time.

What will happen during the visit or online?

Eye-tracking study

How will this help families?

Families affected by autism are often recommended by pediatricians, educators, and speech therapists to focus on the language of schooling and refrain from using the family’s home language. While bilinguals are underrepresented in ASD research, there is emerging evidence that exposure to a second language does not negatively impact language skills in children with ASD. This study hopes to shed more light on this question and help families make better informed decisions regarding raising their child with ASD in a bilingual environment (or not).

We are the Psychology of Language Lab at Princeton University, and we are studying how autistic children learn language. We will send families videos of picture books being read aloud, and will study whether different types of picture books can help autistic children learn new words. Families who participate in the study can earn up to $163.

What are the goals of the study?

The goal of this study is to learn more about why some autistic children have difficulty learning language, and to test a teaching method we think may help children learn new words more easily.

What will happen during the visit or online?

If you choose to participate in this study, we will send your family eight short videos of picture books being read aloud. We will also meet with you and your child on Zoom at the beginning and end of the study, during which we will show your child some pictures of objects and ask them to find objects that match. Finally, we will send you a questionnaire to fill out at the beginning and end of the study, and follow up with you three months after the end of the study to see how much your answers change.

How will this help families?

This study will help researchers develop new methods of teaching language to autistic children.

We are a team of researchers located at the MGH Institute of Health Professions (MGH IHP) in Boston, MA. We are completing a study about speech therapy treatment for children with the motor speech disorder childhood apraxia of speech and autism. Instead of being primarily drill-based, therapy will be embedded in a social, play-based context to provide ecologically valid feedback and help children generalize their skills as much as possible.

What are the goals of the study?

The main aim of this study is to test whether treatment for the motor speech disorder childhood apraxia of speech, appropriately modified for minimally verbal autistic children, does in fact improve speech production in minimally verbal children with both conditions.

What will happen during the visit or online?

Prospective participants will be assessed in our lab in Charlestown with a variety of measures that document their speech, language, social, and nonverbal IQ skills. During the speech tasks only (estimated to last approximately 30 minutes), children will wear reflective markers, 2-3 millimeters in size, on their faces. Our multiple camera system will track the movements of these markers as children attempt to repeat a series of syllables and simple words. Baseline assessments are conservatively estimated to last approximately 4 hours, scheduled as two 2-hour visits. All assessments will be audio- and videotaped for later analysis.

During the baseline visits, children’s parents will also be asked to complete a series of questionnaires that document demographics, developmental history, and current levels of community functioning.

After analysis of baseline data (documenting that participants meet criteria for ASD, minimally verbal status, and CAS), children who meet inclusion criteria will be invited to receive treatment. A set of 6 one- or two-syllable words will be selected for each child, identified from their baseline tests to specifically involve the speech movements that are found to be disordered in their speech (i.e., stimuli will consist of words that the child can attempt to say but which are not pronounced perfectly).

Treatment will consist of 15 hour-long sessions over 3 weeks and may take place in our lab or at a child’s home or school, and will be video- and audio-recorded for later analysis.

During treatment sessions, children will practice each target multiple times, divided into separate practice blocks and interspersed with practice on the other targets. A “scaffolding” hierarchy will be employed to help children learn the correct speech movements for each target. Specific scaffolding activities that the therapist will provide include (1) producing the target slowly, (2) producing it in unison with the therapist, (3) gradually fading out this assistance as the child learns to produce the targets correctly on their own, and (4) providing tactile or visual cues to help children remember the correct oral movements for each target.

Practice will occur in a naturalistic, developmentally-informed framework, which involves embedding speech tasks within social interactions organized around play or social activities that are matched to the child’s developmental level and that incorporate the child’s target words. For example, if a child has difficulty saying the consonant /k/, the word “cookie” might be selected as a target. This word could be practiced during an activity where therapist and child pretend to feed a stuffed animal cookies or where they actually decorate and eat cookies as a snack. The aim is for children to learn correct speech production at the same time that they engage in positive and rewarding social interactions that promote skill generalization, rather than for them to simply respond to therapist prompts.

After treatment is completed, children will be invited back to the lab to have their speech production analyzed, using the same procedures as at baseline. They may also re-enroll to receive an additional series of 15 treatment sessions if desired.

For their time, participants will receive $50 for completion of the baseline testing and $100 upon completion of the post-treatment testing. Parking compensation will be provided for each visit to our Charlestown lab location.

How will this help families?

In our research, we are interested in understanding why many children with autism don’t learn to talk on their own. Our ultimate goal is to improve communication outcomes for children at risk for being minimally verbal. In this study, participants will be contributing to the advancement and development of evidence-based speech treatment approaches for children with autism and childhood apraxia of speech.