Autism Spectrum Disorder Parental Attitudes Survey

The current study is being conducted by Drs. Knutson, Viskupic, and Wiltse from South Dakota State University. This is a collaborative initiative to gain insight into various areas impacting the autism community. Dr. Knutson is a clinician having worked with autistic individuals and families for 15+ years. Drs. Viskupic and Wiltse are political scientists who examine attitudes and behaviors surrounding the COVID-19 pandemic. Key points to the study: Prevalence and impact of head-directed self-injurious behavior – Attitudes surrounding supportive equipment – Impact of COVID-19 on access to treatment and healthcare choices.

What are the goals of the study?

Our goal with this study is to gain critical information impacting families who have a loved one with autism. By gathering this information, we hope to improve individual safety, treatment options, treatment accessibility, and policy change supporting family needs.

What will happen during the visit or online?

Participating means completion of an online survey through QuestionPro. You may skip any questions you do not want to answer. We anticipate it will take about 10 minutes of your time.

How will this help families?

These data will assist us in supporting families and individuals impacted by autism, head-directed self-injury, the development of supportive equipment to better protect individuals and guide treatment, and to understand how the recent worldwide COVID-19 pandemic impacted this population to support policy/planning.

My name is Samri and I am a research participant recruiter from Miami University’s Later Language Development Lab. I am reaching out to you today with the opportunity to contribute to our NIH-supported research on the development of a social communication assessment tool which targets adolescents and young adults at the age of transition. We are currently seeking participants between the ages of 14 and 21 years old with a native proficiency in English and typical hearing. We are asking that participants meet one-on-one with a member of our research team for 1-1.5 hours via Zoom to answer a series of interview questions which probe their knowledge of how to communicate in different contexts. After, the participant will be paid the sum of $30-50 via Zelle for their involvement. This study is being conducted by Dr. Trace Poll from the Speech Pathology and Audiology Department at Miami University alongside Jan Petru from Elmhurst University, who is acting as our clinical consultant for the study.

What are the goals of the study?

Specifically, we are continuing research on our development of a social communication assessment tool tailored to adolescents and young adults preparing for the transition from high school to post-school contexts. This tool that we are developing is called the Transition Pragmatics Interview (or the TPI).

What will happen during the visit or online?

This commitment includes the signing of a consent form, the completion of a brief history form, and a 1-1.5 hour meeting via Zoom to answer interview questions probing their knowledge of how to communicate in different situational contexts.

How will this help families?

The information from this project provides information on the degree to which the TPI is a valid and reliable measure of social communication. Speech-language pathologists, special educators and related professionals currently lack assessment instruments that address the population and contexts targeted by the TPI. The project will indicate how the TPI may improve on clinical judgment, or the findings of instruments less targeted to the needs of adolescents and young adults with disabilities in transition programs. Fundamentally, the results will indicate how the TPI may be refined in order to become a more valid and reliable measure.

We are excited to invite you to participate in our upcoming survey where you can win a $50 Amazon gift card for participating! At Hofstra’s Diagnostic and Research Institute for Autism Spectrum Disorders (ASD), we are committed to advancing knowledge and understanding in families parenting autistic children. The current study titled, “The Relationship Between Dyadic Coping and Couple Satisfaction for Parents with Autistic Children” utilizes a survey that takes approximately 10 minutes. Your input will contribute to the body of knowledge in autism research. Survey Link: https://tinyurl.com/hofstraasd

What are the goals of the study?

The goal of the current study is to further understand how parents with autism utilize coping mechanisms to overcome stress and achieve satisfaction within their relationships.

What will happen during the visit or online?

You will take a 10 minute survey.

How will this help families?

This may help in understanding the support systems in place for children with autism and contribute to the positive research surrounding autism and families that have autistic children.

The objective of this study is to assess the stress level and engagement of students subjected to different forms of training. The subjects will include students and trainees with learning and/or developmental disabilities in addition to neurotypical students. The training will be delivered in multiple forms: pre-recorded single viewer, prerecorded with additional participants, pre-scripted live one-on-one and/or pre-scripted live with additional participants. We aim to determine which training is least stressful and most engaging for students and if differences exist based on a specific disability with a focus on students with autism spectrum disorder.

What are the goals of the study?

The objective of this study is to assess the stress level and engagement of students subjected to different forms of training.

What will happen during the visit or online?

The subjects will be fitted with a Shimmer Glove on their hand and will wear TobiiPro glasses for eye tracking or an eye tracking bar will be used. Each subject will be asked to submit a salivary sample before each training and directly after each training. They will be asked to complete 3 trainings over 4 visits. The Neurodivergent will attend an acclimation session in which no training is offered.

How will this help families?

This could help them learn which teaching method (in-person, prerecorded video or zoom) is best for their loved one. Which will help them to be stronger advocates.

Researchers at Seattle Children’s are looking for parents of 2 to 12 year old children with autism spectrum disorder to take part in an online survey study and an in-person EEG visit. We will use a variety of neuroscience, behavioral, and self-report techniques to first understand if there are unique emotional or behavioral considerations for families of children with neurodevelopmental disorders and challenging behaviors and if these characteristics influence participation in and completion of interventions.

What are the goals of the study?

This study is being done to learn more about parents’ emotion processes and problem-solving in families of children with neurodevelopmental disorders and behavior problems. For families who participate in this study, parents will complete several questionnaires and one lab-based visit to measure brainwaves with an EEG while completing some problem-solving or other tasks.

What will happen during the visit or online?

Parents will complete about 1 hour total of questionnaires (about themselves and their children) and 1.5 hours of an in-person visit. During the in-person visit, parents will complete 15 minutes of problem-solving activities and 1 hour of EEG (i.e., measurement of brainwaves while playing games).

How will this help families?

Findings will help us support families enrolled in interventions targeting challenging behaviors.

Parents of children with autism spectrum disorder (ASD) experience higher rates of anxiety, depression, and poor overall well-being, particularly when their child engages in challenging behavior, (e.g., aggression, self-injury, property destruction). Acceptance and commitment therapy (ACT), which encourages psychological flexibility and attending to the present moment, is an effective intervention for addressing well-being in parents of children with ASD when presented in various formats. Virtual group ACT can increase accessibility and improve social connectedness for parents. However, recent literature suggests that the time commitment may impact parents’ participation in interventions focused on their well-being. The current study will examine parents’ participation in and perceived acceptability of 6 hours of virtual ACT groups when administered in three different formats: a 6-hour workshop, three 2-hour sessions, and six 1-hour sessions. Participants will include 36 parents of children with ASD and co- occurring challenging behavior randomized across nine groups (i.e., three groups of four participants per format). All participants will attend a virtual intake interview, receive 6 hours of ACT group intervention, and participate in two virtual individualized parent training sessions to learn and practice behavioral intervention techniques when faced with treatment challenges. Primary outcomes of feasibility and acceptability include parent participation and acceptability ratings. Secondary outcomes include change in psychological flexibility and well-being after participating in ACT groups and procedural fidelity when implementing the behavioral intervention. Findings can inform future research examining virtual ACT groups for parents delivered in conjunction with their child’s behavioral services by exploring which format may lead to higher parental engagement in an intervention to improve their well-being, which can ultimately improve outcomes for both parents and children.

What are the goals of the study?

By directly assessing parents of children with ASD’s format preferences and perspectives on how parental support activities could increase engagement, we can better inform future iterations of the virtual ACT group intervention to best meet the needs of this population. Incorporating community voices into the development of interventions is associated with increased engagement and overall benefit; therefore, it is critical to assess the perspectives of parents of children with autism on components of parental support activities designed for them.

What will happen during the visit or online?

Participants will be asked to participate in a virtual intake interview (~1 hour), 6 hours of the virtual ACT group intervention, and 2 hours of virtual parent training to support parents in addressing their child’s challenging behavior. Participants will be asked to identify another adult to assist with the virtual parent training sessions.

How will this help families?

In addition to directly addressing parent participants’ well-being and providing parents with individualized behavioral intervention strategies, outcomes have significant practical implications for mediating positive treatment outcomes for children with autism and co-occurring challenging behavior. Given that children are part of a family system and are affected by the functioning of that system, it is critical to address the well-being of family members when attempting to improve outcomes for autistic children. Further, challenging behavior and parental stress often have a bi-directional relationship, such that increased parental stress can also increase the frequency and intensity of challenging behavior. Thus, even if the child’s challenging behavior is reduced in behavioral treatment, high parental stress may decrease the treatment’s effectiveness. Though parents of children with autism tend to have significantly higher stress levels than parents of typically developing children, few intervention programs for children with autism specifically address parental well- being. As such, outcomes of this study addressing parental well-being through a virtual group ACT intervention can increase practitioners’ knowledge of the importance of addressing parental well-being as part of a child’s behavioral treatment to improve outcomes for both the child and the overall family system.

We are a group of researchers at the Centre for Addiction and Mental Health (CAMH) and University of Toronto, Toronto, Canada, doing a study, titled Knowledge, Perceptions, and Use of Psychedelics among intellectually able adults with autism spectrum condition: An online survey. We are doing this project to learn about the perception, opinions, and knowledge of autistic adults about psychedelics, and whether they have used them in the past. Psychedelic compounds are a group of chemicals that change or enhance sensory perceptions, thought processes, and energy levels.

What are the goals of the study?

These compounds are sometimes used to facilitate spiritual experiences. Psychedelic compounds have shown impressive effects in neurotypical people with depression, post-traumatic stress disorder, substance misuse, and obsessive compulsive disorder, etc. Many clinical trials of psychedelics have been published in neurotypical populations and many more are ongoing. Nonetheless, there has been only one clinical trial of 3,4-Methylenedioxymethamphetamine (MDMA), one of psychedelics) in autistic adults with co-occurring social anxiety disorder. This neglect represents mental health and research inequity. Therefore, we want to do this study to listen to voices from autistic people to guide research and practice priorities surrounding the possible future uses of psychedelics.

What will happen during the visit or online?

They will be asked for responses to the online survey regarding their opinions and past experiences with psychedelics. The survey should take between 20 to 30 minutes to complete. Any information we collect from people is private and deciding to complete the survey is voluntary. Completing the survey (or not) will not impact the care anyone receives at their medical service providers (including CAMH) now or in the future.

How will this help families?

In order to better respond to the diverse needs of autistic people and to develop new interventions for their various co-occurring mental health concerns, it is crucial to represent the ASC population in empirical research on psychedelics (Oritz et al., 2022). Obtaining the opportunity to evaluate the efficacy of this new treatment method in individuals with ASC would depend on the perspectives of the ASC population on psychedelics, as well as their willingness to try them as a potential treatment. It is important to find out what kind of research and mental health improvements are of value to autistic individuals. It is equally important to obtain their perspective prior to carrying out such studies. Moreover, it is vital to transform the experiences of autistic adults into knowledge that can be used to redefine current research strategies (Pukki et al., 2022). Valuing the voices of autistic individuals and involving their opinions can have highly beneficial consequences such as the correction of existing stigmas and misconceptions of concepts about autism and neurodiversity, and can lead clinical research towards more effective directions (Pukki et al., 2022).

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.

Our team is currently evaluating Work Chat within pre-employment-transition services and other settings in a different study. We are aiming to see if it is feasible for Work Chat to be delivered in a completely online setting and not within schools or other sites. We are also aiming to evaluate the tool specifically within an underrepresented group, black transition-age youth with autism spectrum disorder. Work Chat is an online gamified computer program designed for the autism community and we are looking for help from adults on the spectrum. Work Chat is designed to be a typical work day experience in a virtual gaming world to practice soft skills with customers, coworkers, and supervisors.

What are the goals of the study?

Our goal is to evaluate Work Chat acceptability and also see if it can increase employment retention and social skills.

What will happen during the visit or online?

Participants will be expected to complete a series of surveys and assessments over Zoom that will last approximately 3 hours at two time points, and then 3 follow up surveys at 3 month, 6 month, and 9 month time points. If they are randomized into Work Chat, they are also going to be using Work Chat and completing maybe 1-3 sessions (approximately 1 hour) over approximately 6-8 weeks.

How will this help families?

The goal is to see improvement in employment retention and an increase in social skills in workplace settings.

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.

The Vision Lab at Old Dominion University is currently looking for volunteers ages 8 – 20 years old with and without autism for an online IRB-approved research study conducted in collaboration with Eastern Virginia Medical School. Children and young adults with autism may make and view facial expressions differently than children and young adults without autism. Video and eye-tracking can be used to study these differences. Participants interact with the researchers on Zoom and play a video game related to facial expressions while a webcam captures their facial expressions and gaze. By studying the video and eye-tracking data, we hope to identify behavioral markers that can help assess and treat children and young adults with autism.

What are the goals of the study?

The purpose of this study is to learn more about facial expressions and gaze behaviors in children and young adults with and without autism. Imaging, such as video and eye-tracking, can be used to study these differences. By studying the imaging data, we hope to identify behavioral markers that can help assess and treat children and young adults with autism.

What will happen during the visit or online?

Participants take part in two Zoom sessions with the researchers. Each Zoom session will take up to 1 hour, including breaks. In the first session, the participant will complete a brief IQ assessment. In the second session, the participant will play a video game related to facial expressions while their webcam records their reactions. Participants will also be asked to complete two take home measures (identifying emotions based on pictures of people’s eyes and a face memory test) and an optional personality questionnaire (completed by the parent for participants under the age of 18).

How will this help families?

We hope that this research will identify behavioral markers that may facilitate new computer-based tools to improve access to care and intervention at home as well as in the clinic.

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.