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 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.

Recent work suggests that mothers of children with disabilities are at increased risk for accelerated cognitive aging. Mothers of children with autism spectrum disorder (ASD), in particular, may be especially susceptible to atypical aging given their elevated rates of key risk factors for dementia relative to mothers of typically developing children or children with other neurodevelopmental disorders. A significant number of mothers of children with ASD (up to 65%) continue to be caregivers for their adult children, resulting in increased stress, depression, loneliness, reduced social support, and poor sleep, all of which are risk factors for dementia-related disease. This NIH-funded study conducted by Dr. Laura Friedman at the University of South Carolina aims to address gaps in the literature on cognitive decline in mothers of children with ASD and associated risk factors.

What are the goals of the study?

Findings from this study will provide insight into atypical cognitive aging among mothers of children with ASD as well as potential risk factors. This will shed light on the need to monitor aging in this group, which may have broader consequences on their children who continue to live at home and depend on their parents as caregivers after high school.

What will happen during the visit or online?

You will complete 1 hour of surveys about various topics related to your life, including your memory and mental health. Then you will complete a 2 hour interview via Zoom with a trained examiner who will ask you questions about your experiences. You will also complete measures of thinking skills and attention.

How will this help families?

This study will contribute to our understanding of the potential link between autism and dementia-related disease, and is an important step in identifying the need for and advocating for family-centered supports through the lifespan.

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.

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.

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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.

The purpose of this study is to understand the healthcare experiences of both non-autistic and autistic adults as well as their related needs. Participants that support adult family members at healthcare appointments will have the option to answer additional questions.

What are the goals of the study?

To improve education to reduce healthcare disparity and to offer guidance on universal design as well as accessibility.

What will happen during the visit or online?

Take an online survey

How will this help families?

Improve education for healthcare professionals and office workers

We want to understand autistic adults’ experiences with communicating without words because because individuals with autism tend to have difficulties using nonverbal communication. We want to be able to help the autism community with communication skills if that is something the study indicates is important to them, and help create interventions targeting nonverbal communication if the autism community indicates a desire for it. This study began at the University of the Sciences in Philadelphia by Dr. Ashley de Marchena and a team of students as part of the InterAction Lab and is now being continued at Drexel University’s A.J. Drexel Autism Institute.

What are the goals of the study?

We are interested in developing supports to help improve communication experiences for adults on the autism spectrum, but first want to hear from the autistic community about what (if any) supports are wanted or needed.

What will happen during the visit or online?

Participants will be asked to complete about 60 minutes of online surveys related to communication, autism traits, and general information about themselves. The surveys should take about an hour to complete. Communication differences will be accommodated.
Participants will receive a $40 Amazon gift code after you complete the study.

How will this help families?

The results of the survey will be used to develop supports for both autistic and non-autistic people to facilitate stronger, more comfortable interactions.

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.

This program supports data collection and sharing that will expand and improve medical research. By generating the most comprehensive Data Collection Program for these conditions, we can increase research and accelerate the development of new drugs, devices, or other therapies. Participating families will also have the ability to connect with other patient organizations, be contacted to participate in emerging clinical trials (if eligible), and manage how their data is used.

What are the goals of the study?

The RARE-X Data Collection Program makes data collection free, accessible and easy for communities, while ensuring the data collected is as useful and shareable as possible for researchers and others working on treatments. Our goal is to enable families to easily collect and access their data and empower them to become data stewards and sharers. This program helps create a robust data set that can be shared to accelerate diagnosis, disorder understanding, and drug and therapy development.

What will happen during the visit or online?

Participants will be asked to create a secure, password-protected account and provide their consent to participate. Participants will then have the chance to answer a set of questions (survey) regarding the patient’s health history, development, and treatment and care. Additional surveys will be added over time and participants will be notified of future surveys relevant to them. Participants will also have the opportunity to upload genetic test results related to the disorder diagnosis.

How will this help families?

Participation in this program may…

  • Contribute to further research leading to the development of treatments
  • Provide patients the opportunity to participate in clinical trials
  • Help you learn more about the disorder, leading to better advocacy in medical, education, and social services
  • Inform patients/families about the progression of the disorder and how they may compare with other patients