Knowledge, Perceptions, and Use of Psychedelics among intellectually able adults with autism spectrum condition: An online survey.

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.

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.

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

This study is being conducted by Dr. Lee Mason and Alexis Bolds of Cook Children’s Health Care System and Texas Christian University’s Burnett School of Medicine in Fort Worth, Texas. Our research is designed to assess your child’s language development over the course of two years. Every six months we will ask you and your child to take part in a telehealth-based functional language assessment that will last approximately one hour. At the completion of this project, we will compare the different language profiles of all participants.

What are the goals of the study?

We are asking you to take part in this research because your child’s language skills are still developing, and we are trying to learn more about how functional language develops over time. The purpose of this research is to determine whether we can accurately conduct language assessments via telehealth, and to better understand the differences in language development between children with and without autism spectrum disorder.

What will happen during the visit or online?

A language assessment called a “verbal operant experimental (VOX) analysis” will be conducted every six months as part of this research. The VOX is a functional analysis of language that has been carefully designed to assess four language domains: conversing, labeling, echoing, and requesting. Across each of these conditions, we will assess your child’s ability to say the same words. Caregivers will also be asked to complete a brief demographic survey at the time of each assessment to identify potential factors that may be related to language development. We expect each assessment to take approximately 45-60 minutes of your time.

How will this help families?

After each VOX analysis, you will receive an assessment report that describes strengths and weaknesses of your functional language skills. The report provides recommendations for helping to remediate any deficit areas identified by the assessment.

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 individuals experience depression differently, and at a higher rate, than typically-developing individuals, yet there is no measure that specifically measures depression in autistic populations. As such, we have created a new measure to look at depressive symptomatology as seen in autistic populations. Our study will provide us with a more complete understanding of autistic youth’s mental health, while also providing professionals with a more accurate understanding of how to tailor treatments for depressive symptoms in autistic individuals.

What are the goals of the study?

In our study, we are investigating the overlapping symptoms between depression and autism. The goal of this project is to learn more about depressive symptoms that autistic adolescents may show. We are also hoping to gain a better understanding of whether parents attribute such symptoms to their child’s primary diagnosis of ASD, or to depression, or to something else such as puberty or stress.

What will happen during the visit or online?

Adolescents will be asked to complete a questionnaire about their feelings over the last two weeks. This will take approximately 30 minutes. Parents will also fill out a questionnaire about their child’s feelings, behaviours, and emotions over the two weeks. Then, parents will be asked to complete another questionnaire about their child’s behaviours and emotions over the past 6 months. Together, this should take approximately an hour and a half and will be completed over Zoom. Parents will receive a $20 Amazon gift card and adolescents will receive a $10 Amazon gift card for participating.

How will this help families?

Co-occurring conditions such as depression in autistic individuals can increase stress on both the individual and their family. Our study will provide us with a more accurate understanding of the rate of depression in autism, how depression affects autistic individuals and their families, and how to care for families that are experiencing depression in autism. As such, we can begin to lessen the stress and other impacts that depression can have on autism, and improve the lives of autistic individuals and their families.

When you participate, your experiences help the medical community to understand your rare genetic disorder faster. We track health and development over time to help answer questions about the future of people with these rare disorders, and make it easy to connect you to researchers who want to include you or your child in research studies and clinical trials. Your unique experience could hold the clues that scientists need to find answers for you and others with rare genetic disorders.

What are the goals of the study?

Simons Searchlight is an international research program with the goal of accelerating science and improving lives for people with rare genetic neurodevelopmental disorders. We study over 150 genes that cause rare neurodevelopmental disorders, and our list is always expanding. You or your family member must have a genetic diagnosis of one of these conditions in order to join. The study is international, and families can participate in several languages. You can find our gene list and list of languages at SimonsSearchlight.org.

What will happen during the visit or online?

Simons Searchlight collects family, medical, developmental and behavioral information through online surveys and phone interviews with families and individuals. Optional blood collection is performed either remotely or at in-person patient organization conferences. Upload your clinical genetic results report, complete initial online surveys, provide our genetic counselors medical history information over the phone, provide an optional blood draw, and update us every year.

How will this help families?

Joining such a community enables families to find and engage with others with the same genetic condition, as well as providing opportunities to connect with researchers and participate in studies aimed at bettering our understanding of these disorders and, in some cases, clinical trials to advance supports and treatments.