Parental Accommodation of Autism Spectrum Disorder

My name is Molly, and I am a doctoral student at the Ferkauf Graduate School of Psychology in New York. I am conducting my doctoral research on parental accommodation in ASD. If you have a child with ASD between the ages of 5 and 18, please consider participating in this quick 10-15 minute online study. I have a passion for working with individuals with ASD and have been involved in Autism-related research for the last 6 years. Participation in this research project will provide the scientific community with valuable information about ASD.

What are the goals of the study?

My name is Molly, and I am a doctoral student at the Ferkauf Graduate School of Psychology in New York. I am conducting my doctoral research on parental accommodation in ASD. If you have a child with ASD between the ages of 5 and 18, please consider participating in this quick 10-15 minute online study. A $2 donation to the Autism Self Advocacy Network will be made in honor of your participation and you will be providing the scientific community with valuable information about ASD. This research project was reviewed and received an exempt determination by WCG IRB. Thanks in advance for your time and consideration. https://tinyurl.com/FARLabASD

What will happen during the visit or online?

You will be asked to complete questionnaires about your child’s symptoms, how their symptoms impact the relationships in your family, and the extent to which you are involved in assisting your child when they are experiencing symptoms.

How will this help families?

Research results will provide the scientific community with valuable information about ASD.

The current study will be conducted by a research team at the University of Maryland College Park, via Zoom and aims to teach peer type family members (PFM) such as siblings or cousins of autistic children/youth to use video prompting to support daily living skills. The primary aim of the study is to examine the PFM fidelity of implementation using a single-case design across 10 child-family member dyads. The secondary aim is to examine the effects of PFM-implemented video prompting on daily living skills of children or youth with autism using a single-case design across the same 10 dyads. The third aim of the study is to descriptively analyze the social validity of the intervention by having the participants complete an anonymous survey (for caregivers) or a Zoom session (for child/youth and the PFM). The findings will provide implications for family-involved learning of daily living skills using virtual coaching in natural settings. This study is important because autistic children and youth have benefited from step-by-step directions to learn daily routines including mealtime, brushing teeth, or doing laundry or dishes. For example, video prompting has been shown to be effective to introduce cooking, academic, functional, and social skills. Previous research shows that peer-type family members (PFM) such as siblings successfully implement interventions to support diverse skills for autistic children/youth. Thus, the use of PFM-implemented video prompting could be beneficial to support the daily living skills of children or youth with autism.

What are the goals of the study?

The study attempts to teach PFMs of autistic children/youth to use video prompting to support daily living skills. The main goal is to examine the PFM fidelity of implementation using a single-case design across 10 child-family member dyads. The secondary aim is to examine the effects of PFM-implemented video prompting on daily living skills of the same children/youth with autism. Finally, the study descriptively analyzes the social validity of the intervention by interviewing the participants.

What will happen during the visit or online?

The study will take place via Zoom for approximately 3 months with 2-3 sessions per week and the following procedure: • 5-minute questionnaire • 5-10 minutes observation of the child engaging in the everyday skills (about 1-2 weeks) • 20-minute training for PFM to use video-based learning (about 2-3 weeks) • 20-minute session for observation of, and feedback for child and PFM (about 3-4 weeks) • 5-minute observation of the child/youth engaging in everyday skills (about 1-3 times) after the training is over • 5-minute survey for caregiver, and 10-minute Zoom session with child/youth and PFM to ask for feedback about the research process

How will this help families?

We hope to better understand how peer type family members such as siblings or cousins could participate in home-based daily living skills learning and practice for autistic individuals using video clips and video prompting. Specifically, we want to understand how family members can receive training via a virtual platform, and implement the intervention to fidelity. Additionally, we want to examine how effective it is for a sibling or a cousin to facilitate video-based learning of daily living skills on the autistic individual’s outcome. Finally, we want to understand how feasible and relevant these training and intervention strategies are for caregivers, autistic individuals, and their peer type family members.

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.

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.

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.

The genetic changes we study in TIGER3 have been connected with autism and developmental disabilities, but we are just beginning to learn how those changes might affect each person and family differently, and what effects might be shared versus unique across those genetic variants. By learning more about the shared and unique effects of these rare variants, we aim to contribute to (1) better understanding of co-occurring medical and behavioral conditions, and (2) development of individualized supports for affected individuals and their families.

What are the goals of the study?

In the TIGER research study, we are learning more about individuals with genetic events associated with autism spectrum disorder (ASD), intellectual disability (ID), and/or developmental delay (DD). We hope to better understand and describe how different gene changes influence the development, behavior, and experiences of children and adults. Individuals with these genetic changes may have neurodevelopmental differences that we would like to better understand.

What will happen during the visit or online?

Eligible families participate in a consent phone call, and are then invited to complete a series of video- or phone calls to assess for autism-associated features, adaptive skills, cognitive skills, and medical history. Caregivers are also invited to complete a variety of online questionnaires, including measures of adaptive behavior, treatment history, sleep habits, gastrointestinal symptoms, social-emotional functioning, and executive function. Biospecimen (blood or saliva) collection is completed remotely. Finally, families are offered a feedback session with a clinician and a written report of standardized measures and recommendations.

How will this help families?

Families will be compensated $100 for their participation. Participants may receive feedback about their family’s genetic event(s). Families will also receive written and/or verbal feedback regarding adaptive behavior, social communication skills, language skills, and cognitive skills as available from completed study activities.

Autistic children frequently engage in repetitive and inflexible behaviors, and sometimes these behaviors can significantly interfere with child learning, are associated with long-term functional impairment, and co-occurring psychiatric conditions (e.g., anxiety). However, there is a significant gap in effective interventions that address repetitive and inflexible behaviors. The FITBI Study partners caregivers of autistic children with trained therapists to provide coaching for inflexible or repetitive behaviors that are interfering with parent or child quality of life.

What are the goals of the study?

Researchers at the University of Kansas are currently recruiting for a study that provides parent coaching to address the repetitive or inflexible behaviors of autistic children between the ages of 3 to 9 years old. The Family-Implemented Treatment for Behavioral Inflexibility (FITBI) project partners eligible participants with a trained coach to receive individualized support via telehealth.

What will happen during the visit or online?

If you and your child qualify to participate, you will be partnered with a trained coach to receive free, individualized support. Here are a few important details about the research study:
• The study will primarily take place via a secure telehealth video meeting system. Depending on family proximity, there could be home visits to collect data.
• Caregiver participation includes attending weekly telehealth sessions with a trained coach and completing online surveys and brief interviews about yourself and your child.
• Participants can receive up to $120 in compensation for participating.
• Eligible participants will be randomly assigned to one of two groups.
• Participants will be recruited from the states of Kansas and Missouri.

How will this help families?

The overall goal of the FITBI Study is to determine whether a new form of family-based intervention for repetitive and inflexible behaviors, delivered using videoconferencing technology, can counter any negative effects of those behaviors and improve positive outcomes for young autistic children. Results from this study could have substantial implications for remotely delivered interventions that address the repetitive and inflexible behaviors of autistic children.

This is the first study to consider the neural indices of cognitive inflexibility in autism. Since cognitive inflexibility is related to core autism features, we hope that findings from this project will support the field’s goal to inform prevention and treatment interventions to inform personalized interventions that address specific outcomes.

What are the goals of the study?

This study seeks to examine core behavioral and neural presentations associated with cognitive inflexibility (CI) in both autistic and non-autistic youth. The current project is also aimed at validating specific neural indices associated with CI and better understand links between neural indices and behavioral presentations of CI. This study will further examine relations of CI to core autism symptoms (i.e., social communication deficits and RRBs), as well as co-occurring psychopathology that cause significant impairment.

What will happen during the visit or online?

Participants will complete behavioral assessments (ADOS, DKEFS, EFCT), cognitive assessment (KBIT), an EEG task, and self-report measures. Parents will also complete parent-report measures.

How will this help families?

Upon request, the research team will provide a research report of all assessment results (including ADOS) that can be shared with other service providers, schools, etc.

This study will look at how our participant’s sensory processing changes as they develop into adolescents. This is an important period of growth and can greatly inform us about what changes the brain undergoes during this time, something that can be useful for future studies.

What are the goals of the study?

A primary goal of the study is to understand how sensory processing develops over adolescence. We hope to identify neurobiological mechanisms related to sensory over-responsiveness (SOR) with the goal of informing the development of targeted interventions.

What will happen during the visit or online?

Participants will complete an MRI as well as some sensory games and questionnaires. There are some short cognitive assessments done to confirm eligibility for the study.

How will this help families?

Our study provides research reports to families describing their child’s sensory processing abilities in relation to their peers. This research may also help inform future research into treatment for sensory over-responsiveness (SOR)

By learning more about how the ASD brain in children, we can help establish ways to identify and intervene in ASD early. If ASD is identified at young ages, resources such as social supports can bolster long-term adaptive functioning in children with ASD. Also, increased understanding about the mechanisms that underlie atypical social functioning in ASD will allow science to develop targeted, effective assistance for these youth as early as possible.

What are the goals of the study?

This project aims to further understand what makes the brains of children with autism spectrum disorder (ASD) unique. Specifically, this study is interested in helping us understand how neural processes in the developing ASD brain contribute to atypical social functioning. A promising new method of assessing brain activity called “phase-amplitude coupling” will be measured via non-invasive electroencephalogram (EEG) technology.

What will happen during the visit or online?

Both children who do and do not have ASD will be invited to participate in an EEG, play computer games during the EEG, and fill out self-report questionnaires with the help of a trained researcher. Parents of participating children will also fill out related surveys. This study is comprised of two visits spaced out over several months.

How will this help families?

Increased understanding about the mechanisms that underlie atypical social functioning in ASD will allow science to develop targeted, effective assistance for these youth as early as possible.