Anxiety - Autism Research Institute https://autism.org/category/anxiety-2/ Advancing Autism Research and Education Fri, 21 Nov 2025 15:23:52 +0000 en-US hourly 1 https://wordpress.org/?v=6.9.4 Autism Health and Nutrition https://autism.org/health-nutrition/ Fri, 24 Oct 2025 19:28:41 +0000 https://autism.org/?p=18022 Kelly Barnhill, MBA, CN, CCN, discusses nutrition in autism based on recent publications. She outlines research updates on amino acid patterns, probiotics, and dietary interventions, underscoring both what we know and what we don’t know. The speaker discusses the clinical interpretation and application of this research, touching on common nutrient deficiencies before the

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Kelly Barnhill, MBA, CN, CCN, discusses nutrition in autism based on recent publications. She outlines research updates on amino acid patterns, probiotics, and dietary interventions, underscoring both what we know and what we don’t know. The speaker discusses the clinical interpretation and application of this research, touching on common nutrient deficiencies before the Q&A.

In this webinar:

0:00 – Introductions
2:00 – Prospective study on amino acid patterns
5:50 – Prospective Study on Probiotic Intervention
7:40 – Systematic Review of Dietary Intervention and Gut Health
10:54 – Bibliometric Analysis of Influential Articles
13:47 – Systematic Review of Probiotics in Autism
16:06 – Nutrition Reviews Study on Mediterranean Diet
19:28 – Study on Gluten- and Casein- Free Diet
21:48 – Review on Ketogenic Diet
26:16 – Food, Nutrition, and Autism
27:57 – Systematic Review – Food as Medicine
34:40 – Clinical interpretation and application
40:30 – Micronutrients
44:10 – Q&A

Prospective Study on Amino Acid Patterns 

Dr. Barnhill outlines a 2025 study on amino acid patterns in over 1,200 children (2-8 years) with autism. Researchers found lower levels of glutamine in children with autism and significant differences in several amino acids across groups (2:00). Specifically, the study noted that those with neurological impairment were deficient in amino acids that presented with susceptibility to neurocytotoxicity and oxidative stress, while those with nutritional concerns presented with a different set of issues, pointing more toward metabolic concerns. Barnhill explains that these findings substantiate clinical observations and suggest that specific amino acid imbalances may be related to different manifestations of autism, supporting the use of nutritional therapeutic intervention to balance amino acid levels. The speaker emphasizes that this is the only amino acid study presented in a prospective way that has been published in a reputable journal in the past few years. 

Amino Acid Patterns in Children with Autistic Spectrum Disorder: A Preliminary Biochemical Evaluation (Ferraro et al., 2025)

Prospective Study on Probiotic Intervention 

The presenter outlines another recent study that speaks to the concerns of effects of probiotic support for children with autism, AD/HD, and children with both diagnoses (AuDHD) (5:50). Children were given a probiotic or a placebo for three months. Researchers saw a significant improvement in hyperactivity and impulsivity in both the autism and ADHD groups. Most notably, the “comfort score” on a quality-of-life instrument showed significant improvement for autistic children. Barnhill notes that, although this is a small study, its findings support clinical observations that probiotics can improve gastrointestinal symptoms and other related issues in children with autism, potentially impacting their quality of life.

Effect of Probiotics on the Symptomatology of Autism Spectrum Disorder and/or Attention Deficit/Hyperactivity Disorder in Children and Adolescents: Pilot Study (Rojo-Marticella et al., 2025)

Systematic Review of Dietary Intervention and Gut Health 

Barnhill examines a systematic narrative review of all articles published between 2000 and 2024 related to autism, dietary interventions, probiotics, and the microbiome. (25-year review) (7:40). The review validated that dietary intervention can improve GI symptoms and gut health for children with autism, which in turn improves their quality of life. Researchers also identified a cycle where sensory processing issues lead to food avoidance (ARFID), which decreases microbiome diversity and increases harmful microbial species, leading to a neuroinflammatory process that affects behavior (9:12). The speaker asserts that this review provides a strong rationale for addressing GI and microbiome concerns as part of a comprehensive care plan for individuals with autism.

Unraveling the Connections: Eating Issues, Microbiome, and Gastrointestinal Symptoms in Autism Spectrum Disorder (Tomaszek et al., 2025)

Bibliometric Analysis of Influential Articles 

The speaker highlights another 25-year study that reviewed all publications on microbiome treatment in autism since 2000 to identify the most impactful and cited articles (10:54). This is one of the first in a series of bibliometric analyses. The study identified two landmark publications: a 2013 mouse model study that established the link between the gut microbiome and ASD, and a very early, relatively small study from 25 years ago that showed improvements in both GI symptoms and behavior in a small group of autistic children treated with an oral antibiotic. These two studies, along with many more, laid the groundwork for the growing field of gut-brain research in autism and further validated the clinical utility of targeting gut health.

Influential articles in autism and gut microbiota: bibliometric profile and research trends (Ying et al., 2025)

Systematic Review of Probiotics in Autism 

Barnhill discusses a systematic review that analyzed 10 completed and published clinical studies, as well as 18 ongoing clinical trials, on the use of probiotics in autism. (13:47). Reviewers found that probiotics can improve social behaviors, drastically improve GI symptoms, and positively alter the gut microbiome when used appropriately. The presenter emphasizes this paper as a valuable and easily accessible resource for clinicians and parents, as it provides research backing for the use of probiotics in addressing a range of symptoms beyond just GI issues – essentially describing what we’ve learned and why it’s important.

Probiotics in autism spectrum disorders: a systematic review of clinical studies and future directions  (Barba-Vila et al., 2025)

Nutrition Reviews Study on Mediterranean Diet

Barnhill notes that we are seeing more and more solid research emerging about how dietary intervention benefits individuals across the board, highlighting that there is no one-size-fits-all approach for any of us and what that means for clinical applications. She outlines a 2025 evaluation of all studies on children (6-16 years) with autism and ADHD, examining responses to nutritional interventions (16:06). The paper concluded that 70% of individuals who followed a Mediterranean diet showed significant improvement in ADHD symptoms. It also noted significant improvements in depression (80%) and anxiety (50%). The speaker states that these results suggest that focusing on a whole, unprocessed Mediterranean-style diet can be a profound and effective intervention for improving neurological and mental health symptoms. 

Mediterranean Diet and Mental Health in Children and Adolescents: A Systematic Review (Camprodon-Boadas et al., 2025)

Study on Gluten- and Casein-Free Diet

The speaker outlines another 2025 study that evaluated a 12-week trial involving 80 children (4-10 years), using a strict, prescribed gluten- and casein-free diet in combination with and separate and distinct from a neurodevelopmental physical therapy program (19:28). Barnhill notes that families prepared meals on their own, meaning there was no technical control group. Researchers saw significant gains in gross motor skills and cognitive function only when the diet was combined with the therapy program. The dietary group alone showed no significant changes. This study suggests that a multidisciplinary, holistic approach is key, and that dietary interventions may be more effective when combined with other therapies.

Effect of Therapeutic Diet Along with Special Physiotherapy Program on Gross Motor Development and Cognitive Function in Autistic Children: A Randomized Controlled Trial (Alsayegh et al., 2025)

Review on Ketogenic Diet

A review of all published papers on the ketogenic diet for individuals with autism found that the diet is not appropriate for everyone due to the high heterogeneity of autism. However, Barnhill continues, it does hold great potential for some individuals by reducing bacterial dysbiosis, decreasing pro-inflammatory cytokines, enhancing gut health, and providing a neuroprotective effect via ketone bodies (21:48). Barnhill underscores that while the ketogenic diet can be effective for the right patient, it should only be implemented with professional guidance due to its complexity and potential dangers when applied inappropriately. More research is needed.

Exploring the potential of the ketogenic diet in autism spectrum disorder: metabolic, genetic, and therapeutic insights (Schrickel et al., 2025)

Food, Nutrition, and Autism

The presenter provides a summary article describing our current understanding of nutrition and autism from a societal and cultural perspective. The paper tangentially addresses all the issues that people in the US should be aware of and attuned to, including environmental and food exposures from prenatal to childhood. Barnhill asserts this study is foundational for building an appropriate dietary approach and understanding what barriers might exist (26:16)

Food, nutrition, and autism: from soil to fork (Shepard et al., 2024) 

Systematic Review – Food as Medicine

The speaker notes a recent systematic review that addresses the use of dietary intervention and therapeutic nutritional support across various diagnoses (27:57). The authors highlight several publications that support the idea that food can be considered a form of medicine and is increasingly understood as a pharmaceutical component in health and medical diagnoses. Barnhill emphasizes the importance of not viewing food choices and dietary recommendations for autism as “other” to the general population’s nutritional understanding. Culturally, we continue to recognize that our diets are integral to health and need to be taken seriously. She states that “we need to hold autism research and interventions to the same standards.” This study ultimately resolidifies the interconnectedness of the gut and brain by highlighting the impact of microbiome health in the GI system on both the vagal nerve and cognition (31:00)

Nutraceuticals in Psychiatric Disorders: A Systematic Review (Bozzatello et al., 2024)

Clinical interpretation and application

According to the presented information, Barnhill asserts that clinicians should assume that diet matters and that a nutritionist or dietary specialist should be included in care counseling and planning for children and adults with autism (34:40). She underscores the importance of avoiding packaged food products, ensuring fiber and water intake are sufficient, and addressing feeding concerns with care and compassion. She also suggests incorporating family and community into diet changes, meal preparation, and eating habits. The speaker also suggests working with a professional to outline any specialized diets (37:40)

Micronutrients & Therapeutic Support

Barnhill lists common micronutrient deficiencies, including B vitamins, fat-soluble A and D, and Omega-3 fatty acids. She notes that addressing gaps with supplemental support is reasonable and appropriate to meet the minimal needs in the case that someone doesn’t have access to those nutrients via diet (40:30). She cautions viewers about the supplement market, noting that it is not regulated; and suggests consulting with someone well-versed in what’s needed and the efficacy of different brands before the Q&A (44:10)

About the speaker:

Kelly Barnhill, MBA, CN, CCN, is the Director of the Nutrition Clinic at The Johnson Center for Child Health and Development. She is a Certified Clinical Nutritionist, with over a decade of experience working with nutrition in children with autism and related disorders. At the Johnson Center, she directs a team of dieticians and nutritionists that has served over 3000 children through this practice. Ms. Barnhill also serves as Chair of ARI’s Board of Directors and sits on ARI’s Scientific Advisory Board.

Take the knowledge quiz

Can’t see the quiz below? Take it online HERE

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Self-Regulation Strategies for Self-Injury

March 25th, 2025|Adults on the Spectrum, Anxiety, Assessment, depression, Meltdowns, News, Self Care, Self Injury, Self-Injury, Webinar|

Emily Ferguson, Ph.D., discusses self-regulation strategies for self-injurious behaviors (SIB). She outlines recent research on the frequency and distribution of different SIBs across a large sample, underscoring the importance of assessing individual behavior

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Wellbeing Wins: Integrating Positive Psychology into the Autism Community

January 2nd, 2025|Adults on the Spectrum, Anxiety, Anxiety, Back to School, depression, Executive Function, Health, Neurological, News, Self Care, Sleep Issues, Social Skills, Webinar|

Patricia Wright, PhD, MPH, and Katie Curran, MAAP, introduce Proof Positive - The Autism Well-being Alliance. The speakers describe positive psychology, its impact on well-being, and why it matters for autistic

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Anxiety and ASD – Live Expert Q&A

March 15th, 2017|Anxiety, Webinar|

Dr. Lauren Moskowitz answers questions about using positive strategies to address challenging behaviors. To review Dr. Moskowitz's previous talk on positive strategies for addressing anxiety and OCD, see: https://www.youtube.com/watch?v=EoFJrxQbeI8 Because this was a

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Assessing and Treating Severe Behaviors https://autism.org/assessing-and-treating-severe-behaviors/ Tue, 09 Sep 2025 00:49:36 +0000 https://autism.org/?p=21006 Learn about the process of getting a behavior assessment from start to finish, plus updates on current research and strategies for treatment. Originally published on September 10, 2025 About the speaker: Nathan Call, PhD, BCBA-D, received his doctorate in school psychology from the University

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Learn about the process of getting a behavior assessment from start to finish, plus updates on current research and strategies for treatment.

Originally published on September 10, 2025

About the speaker:

Nathan Call, PhD, BCBA-D, received his doctorate in school psychology from the University of Iowa in 2003. He has been at Marcus Autism Center since 2006, where he has held many positions as a clinician and as a leader of treatment programs.

Dr. Call has an active research agenda that includes publishing in and serving on the editorial board for several journals, including as an associate editor for Behavior Analysis: Research and Practice. Dr. Call’s current research interests include the assessment and treatment of severe behavior disorders. He is a strong proponent of disseminating behavioral treatments to broader audiences, which has led him to serve as principal investigator on several federally funded randomized clinical trials. Dr. Call has also conducted translational research in behavioral economics and measure development.

Can’t see the quiz below? Take it online HERE

Evidence That Speaks: Prioritizing Proven Communication Supports for Non-Speaking Autistic Children

January 6th, 2026|Back to School, Educational Therapies, Meltdowns, Neurological, Research, Research, School Issues, Sensory, Uncategorized, Webinar|

Connie Kasari, PhD, details what contemporary research reveals about supporting non-speaking or minimally verbal autistic children. She highlights how far the field has come in the past two decades and emphasizes the

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Externalizing behavior among children with neurodevelopmental disabilities https://autism.org/assessing-and-treating-externalizing-behaviors-in-autism/ Tue, 03 Jun 2025 20:12:56 +0000 https://autism.org/?p=21021 Summer Bottini, PhD, discusses externalizing behavior among children with neurodevelopmental disabilities and a behavioral framework for how this behavior develops and persists over time. She describes how both the physical environment and others in the environment can play a role in these unmet needs. Finally,

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Summer Bottini, PhD, discusses externalizing behavior among children with neurodevelopmental disabilities and a behavioral framework for how this behavior develops and persists over time. She describes how both the physical environment and others in the environment can play a role in these unmet needs. Finally, Dr. Bottini will provide an overview of effective behavioral strategies that address these needs and set up the environment for long term success.

Handouts are available HERE

About the speaker:

Summer Bottini, PhD, BCBA-D, received her doctorate in clinical psychology from Binghamton University and completed post-doctoral residencies at the Marcus Autism Center and May Institute. Dr. Bottini is an Assistant Professor in the Emory University School of Medicine Department of Pediatrics and a Psychologist in the Complex Behavior Support Program at Marcus Autism Center. Dr. Bottini specializes in the assessment and treatment of externalizing behavior among individuals with developmental disabilities. Additionally, her work is focused on the effective supervision of clinicians to provide optimal care for autistic and neurodivergent individuals. This includes embedding a neurodiversity framework within clinical practices, addressing staff burnout, effective/efficient training methods, and treatment fidelity.

Take the knowledge quiz

Can’t see the quiz below? Take it online HERE

Evidence That Speaks: Prioritizing Proven Communication Supports for Non-Speaking Autistic Children

January 6th, 2026|Back to School, Educational Therapies, Meltdowns, Neurological, Research, Research, School Issues, Sensory, Uncategorized, Webinar|

Connie Kasari, PhD, details what contemporary research reveals about supporting non-speaking or minimally verbal autistic children. She highlights how far the field has come in the past two decades and emphasizes the

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Preparing for College, Preparing for Success https://autism.org/preparing-for-college-preparing-for-success/ Tue, 13 May 2025 18:56:14 +0000 https://autism.org/?p=22507 This presentation discusses what Bear POWER is, how it benefits college students, and the process of admission. We will also share what skills/strategies students need to be successful in college. Finally, we will share how partnerships have been forged within the campus, community, and across states. When agencies, school

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This presentation discusses what Bear POWER is, how it benefits college students, and the process of admission. We will also share what skills/strategies students need to be successful in college. Finally, we will share how partnerships have been forged within the campus, community, and across states. When agencies, school personnel, campus staff/faculty, and individuals work together, there is a positive outcome for IDD students. This session would be beneficial for middle to high school administrators, counselors, special education staff, and other people working with people who have disabilities. Missouri State University’s Bear POWER (Promoting Opportunities for Work, Education and Resilience) program has 4 pillars: Academic, Social, Independent Living, and Job Readiness. Our program is a five-semester inclusive college program for students with intellectual and developmental disabilities. It is a recognized Comprehensive Transition Program (CTP) by the United States Department of Education.

Printable handouts are online HERE

About the speaker:

Professional headshot of webinar speaker

Dr. April A. Phillips received her Early Childhood Education B.S. degree in 2006 from Missouri State University, a M.S. degree in Educational Leadership and Policy Analysis in 2012, and a Doctorate degree in Educational Leadership and Policy Analysis in April 2021, both from the University of Missouri-Columbia. She began her public education career teaching preschool and then transitioned to special education while at the Kirbyville R-6 School District. Since then, she has taught special education at all grade levels, was a Process Coordinator, and a Special Education Director. Dr. Phillips has had the opportunity to work with students of all ability levels and help families find resources. She finds that working with agencies, educators, parents, and other stakeholders to help students maximize their potential has been rewarding. But the most rewarding moments have been when students find their talents, learn self-confidence, and utilize the skills/strategies that have been taught.

Take the knowledge quiz

Can’t see the quiz below? Take it online HERE

Evidence That Speaks: Prioritizing Proven Communication Supports for Non-Speaking Autistic Children

January 6th, 2026|Back to School, Educational Therapies, Meltdowns, Neurological, Research, Research, School Issues, Sensory, Uncategorized, Webinar|

Connie Kasari, PhD, details what contemporary research reveals about supporting non-speaking or minimally verbal autistic children. She highlights how far the field has come in the past two decades and emphasizes the

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Strategies for Addressing Challenging Behaviors and Implementing Coping Skills in Parenting https://autism.org/strategies-for-addressing-challenging-behaviors/ Tue, 22 Apr 2025 22:19:22 +0000 https://autism.org/?p=21025 This presentation was not recorded. Resources provided by the presenter: ECHO Autism Challenging Behavior: https://echoautism.org/challenging-behavior/ Autism Speaks Challenging Behavior Toolkit: https://www.autismspeaks.org/tool-kit/challenging-behaviors-tool-kit For more information and resources, view Dr. Ferguson's 2024 webinar, Self-Regulation Strategies for Self-Injury About the speaker: Emily Ferguson, Ph.D., is a postdoctoral academic researcher and clinician

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This presentation was not recorded.

Resources provided by the presenter:

For more information and resources, view Dr. Ferguson’s 2024 webinar, Self-Regulation Strategies for Self-Injury

About the speaker:

Emily Ferguson, Ph.D., is a postdoctoral academic researcher and clinician within Stanford University’s Autism and Developmental Disorders Research Program within the Department of Psychiatry and Behavioral Sciences. She earned her doctoral degree in Clinical Psychology from the University of California Santa Barbara and completed her clinical internship at the University of California Los Angeles. Dr. Ferguson’s research focuses on advancing understanding of mechanisms of challenging behaviors in autistic youth and adults to inform treatment development. Her work takes a comprehensive perspective, integrating methods from implementation science to improve the accessibility and quality of clinical care for underserved autistic populations, especially those with higher support needs (or “profound autism”). She is also interested in developing methods to improve self-regulation in individuals with profound autism to effectively manage self-injurious behaviors and aggression. Dr. Ferguson is currently supporting research in the Preschool Autism Lab, and exploring profiles of challenging behaviors with the Program for Psychometrics and Measurement-Based Care in a diverse range of autistic and non-autistic youth to inform treatment approaches.

Take the knowledge quiz

Can’t see the quiz below? Take it online HERE

Evidence That Speaks: Prioritizing Proven Communication Supports for Non-Speaking Autistic Children

January 6th, 2026|Back to School, Educational Therapies, Meltdowns, Neurological, Research, Research, School Issues, Sensory, Uncategorized, Webinar|

Connie Kasari, PhD, details what contemporary research reveals about supporting non-speaking or minimally verbal autistic children. She highlights how far the field has come in the past two decades and emphasizes the

The post Strategies for Addressing Challenging Behaviors and Implementing Coping Skills in Parenting appeared first on Autism Research Institute.

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Self-Regulation Strategies for Self-Injury https://autism.org/self-regulation-for-self-injury/ Tue, 25 Mar 2025 15:54:31 +0000 https://autism.org/?p=18808 Emily Ferguson, Ph.D., discusses self-regulation strategies for self-injurious behaviors (SIB). She outlines recent research on the frequency and distribution of different SIBs across a large sample, underscoring the importance of assessing individual behavior severity instead of an overall SIB score. The presenter considers the role of emotion regulation in SIB interventions. Ferguson considers

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Emily Ferguson, Ph.D., discusses self-regulation strategies for self-injurious behaviors (SIB). She outlines recent research on the frequency and distribution of different SIBs across a large sample, underscoring the importance of assessing individual behavior severity instead of an overall SIB score. The presenter considers the role of emotion regulation in SIB interventions. Ferguson considers emotion recognition, coping strategies, and prevention methods and provides free online resources for parents and clinicians.

In this webinar:

2:25 – Self-injurious behavior and autism
7:20 – Study: Frequency and distribution of unique SIBs
10:30 – Results
17:25 – Summary
19:45 – Helpful questions
22:20 – Adult self-reports
24:12 – Dialectical behavior therapy (DBT)
27:00 – Emotion regulation (ER) and challenging behaviors
30:45 – Emotion recognition and ER strategies
33:55 – Prevention
39:30 – Resources
42:40 – Q&A

Self-injurious behavior and autism

Ferguson explains that self-injurious behaviors (SIBs) are present in 40 – 50% of autistic people. They often persist in varying forms and intensities across the lifespan and significantly increase the likelihood of tissue damage or physical injury, hospitalization, and more restrictive residential placements (2:25). Common forms of repetitive behaviors include head-banging, skin-scratching, self-hitting, hair-pulling, lip or cheek-biting, nail-biting, skin-picking, and hitting against hard objects. Research shows that lower speech production, lower cognitive functioning, greater emotion dysregulation, greater sensory sensitivity, sex, and age are all linked to greater severity of SIB (6:30). The presenter notes that measurements and conceptualization of SIB vary across studies (5:25).

Frequency and distribution of unique SIBs

The speaker outlines her recent publication on the frequency and distribution of unique SIBs across a large sample. The study uses 593 survey responses to explore speech level, cognitive function, emotion dysregulation, and sensory sensitivities for each of the eleven most common non-suicidal SIBs (7:20).

Roughly 30-50% of caregivers reported mild to severe concerns for many types of SIB, highlighting the importance of looking at severity for every kind of SIB instead of an overall score. Results show that higher emotion dysregulation, or difficulty managing, responding, or calming strong emotions, was significantly associated with greater severity of nine types of SIB ranging from self-hitting to skin-picking (10:30). Higher sensory hypersensitivity was associated with greater severity of self-scratching (with and without tissue damage), repetitive hair-twirling, and skin-picking and lip-biting (with and without tissue damage). Ferguson asserts these findings indicate that these types of SIB may be a means of self-soothing or communicating distress in response to overwhelming sensory stimuli (13:30).

Self-scratching, self-hitting, and lip-biting (with tissue damage) were significantly associated with lower IQ, suggesting that the presence of intellectual disabilities (ID) might increase the risk of engaging in specific types of SIB. The study also found that youth who speak in full sentences demonstrate lower severity of self-hitting and head-banging than youth who use no words to communicate. Ferguson reiterates that self-hitting and head-banging may be a way of communicating, especially for autistic people with ID who are non-verbal (15:45)

She summarizes research findings, reiterating the important insights we can gain by examining the severity of unique types of SIB rather than their overall occurrence. She notes that head-banging and self-hitting can result in serious physical harm, posing a greater risk to those with lower IQs and speech ability (17:25)

The speaker suggests asking these questions to help determine causes and care strategies for SIB (19:45):

  • Is the situation placing demands that exceed ER skills? (Adaptive emotion regulation (ER) skills)
  • Is the behavior in response to unmet sensory needs or sensory overload? (Sensory dysregulation)
  • Are the demands on the individual too high or low for their cognitive level? (Cognitive capacities)
  • Does this person have a functional way to communicate? (Adequacy of communication system)

Adult Self-Reports

The presenter outlines a recent study by Moseley and colleagues that asked autistic adults about the perceived role of non-suicidal SIBs (a more extensive list than the previous study). Participants reported hurting themselves in order to feel something, change emotional pain into something physical, relieve stress or pressure, deal with frustration, shock or hurt someone, self-punishment, and to prevent hurting themselves in other ways (22:20)

Dialectical behavior therapy (DBT)

Dialectical Behavior Therapy (DBT) was developed for people with borderline personality disorder but can be applied to people across the spectrum of life. DBT is often a first-line treatment for people who engage in SIB or have suicidal thoughts or tendencies. It works to identify and distinguish repetitive behaviors, accepting the ones that serve a good purpose while changing others that increase the risk of harm to self or others (24:21)

Emotion regulation and challenging behaviors

The speaker outlines the pathway from difficulties with ER to challenging behavior presentation and considers the role that self-regulation has in SIB interventions (27:00):

 Individual factors (hungry or tired) → precipitating cues (loud/surprising noise) → difficulty identifying and labeling emotions (overwhelmed) →  negative experience continues or increases (no coping strategy) → challenging behavior is expressed.

Emotion recognition

Emotion recognition can be difficult for everyone, and creating a personalized feeling chart can significantly help. Ferguson discusses how to make a feeling chart that captures the sounds and feelings of one’s emotions as well as what someone needs in those moments (30:45)

Emotion regulation (ER) strategies

ER strategies include coping skills and co-regulation techniques, which the speaker suggests should be practiced daily. For caretakers, it is essential to do these things with their child or patient to model effective coping strategies. Ferguson highlights the benefits of parent skills training and provides a free training video that teaches some quick coping skills for calming down and returning to a place where you can work through problems and big emotions more effectively (31:40)

Prevention

SIB prevention techniques focus on reducing the likelihood of distressing situations or contexts. If an SIB consistently occurs in a specific location, consider what about that place may cause distress to you or your child. It’s also helpful to note setting events, like sleep, that can affect irritability and ER throughout the day (33:55). The Research Units in Behavioral Intervention (RUBI) provides free online materials to help with SIB prevention.

Functional behavior analyses of problem behaviors are commonly used to identify antecedents, behaviors, and consequences and can help identify positive and negative communication cycles. Ferguson emphasizes that behavioral approaches must be strengths-based and aimed at reducing negative impact. Other prevention methods include mental health therapies and parent training in behavior management, as outlined in the RUBI resources and Parent-Child Interaction Therapy (ages 2 – 7) (35:55). The speaker shares a clinical guide for treating severe behaviors, toolkits, and ECHO training (39:30) before the Q&A (42:40)

Resources provided during the talk and in text:

Originally published December 3, 2024.

About the speaker:

Emily Ferguson, Ph.D., is a postdoctoral academic researcher and clinician within Stanford University’s Autism and Developmental Disorders Research Program within the Department of Psychiatry and Behavioral Sciences. She earned her doctoral degree in Clinical Psychology from the University of California Santa Barbara and completed her clinical internship at the University of California Los Angeles. Dr. Ferguson’s research focuses on advancing understanding of mechanisms of challenging behaviors in autistic youth and adults to inform treatment development. Her work takes a comprehensive perspective, integrating methods from implementation science to improve the accessibility and quality of clinical care for underserved autistic populations, especially those with higher support needs (or “profound autism”). She is also interested in developing methods to improve self-regulation in individuals with profound autism to effectively manage self-injurious behaviors and aggression. Dr. Ferguson is currently supporting research in the Preschool Autism Lab, and exploring profiles of challenging behaviors with the Program for Psychometrics and Measurement-Based Care in a diverse range of autistic and non-autistic youth to inform treatment approaches.

Take the knowledge quiz

Can’t see the quiz below? Take it online HERE

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Self-Regulation Strategies for Self-Injury

March 25th, 2025|Adults on the Spectrum, Anxiety, Assessment, depression, Meltdowns, News, Self Care, Self Injury, Self-Injury, Webinar|

Emily Ferguson, Ph.D., discusses self-regulation strategies for self-injurious behaviors (SIB). She outlines recent research on the frequency and distribution of different SIBs across a large sample, underscoring the importance of assessing individual behavior

The post Self-Regulation Strategies for Self-Injury appeared first on Autism Research Institute.

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Autism and Gastrointestinal Comorbidities – Research Updates https://autism.org/autism-and-gastrointestinal-comorbidities/ Thu, 20 Mar 2025 20:14:47 +0000 https://autism.org/?p=19319 Mojdeh Mostafavi, MD, describes gastrointestinal conditions commonly seen in individuals with autism, including gastroesophageal reflux disease (GERD), inflammatory bowel disease (IBD), Eosinophilic GI disease (EGID), avoidant/restrictive food intake disorder (ARFID), disorders of the gut-brain interaction (DGBI), and constipation. She outlines recent research on the prevalence of these conditions in people with autism,

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Mojdeh Mostafavi, MD, describes gastrointestinal conditions commonly seen in individuals with autism, including gastroesophageal reflux disease (GERD), inflammatory bowel disease (IBD), Eosinophilic GI disease (EGID), avoidant/restrictive food intake disorder (ARFID), disorders of the gut-brain interaction (DGBI), and constipation. She outlines recent research on the prevalence of these conditions in people with autism, emphasizing the complexities of symptom presentation, drivers, and care. The speaker provides a free social story for endoscopies and considers the relationship between pain expression and GI conditions. Mostafavi discusses the difficulties of transitioning from pediatric to adult healthcare in autism. She summarizes the presentation before the Q&A.

Handouts are available HERE

Recommendations for evaluation and treatment of common gastrointestinal problems in children with ASDs – PubMed (article discussed during the talk)
Understanding and Treating Self-Injury Book (book mentioned during the talk)

In this webinar:

1:10 – Introduction, disclosures, language preferences
2:35 – Autism and gastrointestinal conditions
10:20 – Gastroesophageal Reflux Disease (GERD)
14:10 – Inflammatory bowel disease
18:00 – Eosinophilic GI disease (EGID)
22:10 – Avoidant/restrictive food intake disorder (ARFID)
27:15 – Disorders of the gut brain interaction (DGBI)
33:00 – ASD and constipation
37:00 – Resources and tips
46:20 – Conclusion
48:00 – Q&A

Autism and GI conditions

Mostafavi defines autism and lists common co-occurring conditions, including seizures, psychiatric disorders, and gastrointestinal (GI) conditions (2:35). She notes that between ~40% – 70% of children with autism have GI symptoms with a significantly higher lifetime prevalence and that measurement tools don’t capture all GI symptoms (5:30). The most common GI complaints reported by autistic people are constipation, abdominal pain, feeding difficulties, encopresis, and weight loss/failure to thrive (8:40). The speaker underscores the importance of defining these conditions in autism and discusses some of the most common co-occurring GI conditions. 

Gastroesophageal Reflux Disease (GERD)

Gastroesophageal Reflux Disease (GERD) occurs when stomach acid refluxes into the esophagus. This is one of the better-understood GI conditions in autism. Mostafavi outlines a recent study that found that people with autism have a higher risk of developing erosive esophagitis and esophageal ulcers compared to non-autistic groups (10:20). She remarks that acid-blocking medications can mitigate some risk and describes the BRAVO wireless and nasal probe tests for GERD (10:20)

Inflammatory bowel disease

Inflammatory bowel disease (IBD) is broadly characterized by Crohn’s disease and ulcerative colitis, which are caused by inflammation of the GI tract. A recent systematic review and meta-analysis (6 studies, 11 million participants) found an association between autism and the later development of IBD. Mostafavi notes that children with autism often have more potent treatments (second-tier biologics) for GI conditions compared to non-autistic children with GI issues, underscoring their severity in autism (14:10)

Eosinophilic GI disease (EGID)

Eosinophilic GI disease (EGID) looks at the entire GI tract and is associated with an imbalance in the immune system potentially related to food sensitivities. Over time, complications can include fibrosis and eosinophilic esophagitis (EOE). The speaker outlines a recent systematic review and meta-analysis (6 studies, +700,000 participants), which revealed an association between autism and EGID, where the prevalence of autism in the EGID population is 21.59% (18:00)

Avoidant/restrictive food intake disorder (ARFID) 

Avoidant/restrictive food intake disorder (ARFID) is related to at least one of the following:

  • Fear of consequences (symptoms that the food triggers)
  • Sensory aversion
  • Lack of interest/awareness of appetite cues 

Unlike other eating disorders, ARFID is not related to body appearance. Mostafavi notes inadequate caloric intake and deficiencies in micronutrients and vitamins as concerns associated with ARFID. Recent research shows a significant relationship between autism and ARFID, and sensory issues are the most commonly described driver (22:10). The presenter suggests trying treatments like oral desensitization and pairing foods and asserts that applying what works in other intervention spheres to ARFID may be possible (25:20)

Disorders of the gut brain interaction (DGBI)

The gut-brain access involves both nervous systems; many neurotransmitters are produced in our guts. Mostagavi asserts that just because labs come back negative does not mean that GI symptoms are not real because there is no specific test for DGBI (27:15). A retrospective study found that nearly one-third of participants seen through an autism-specific clinic experienced functional GI conditions. The speaker underscores how difficult pain localization can be for people with autism due to complications with interoception (31:00)

Autism and constipation

Constipation is one of the most reported GI symptoms associated with autism. However, chronic constipation does not seem to be associated with a higher rate of abnormal colonic motility in autism. Mostafavi outlines research showing that children with autism are more likely to visit the ER and be admitted to the hospital for constipation-related issues compared to children with other or no chronic conditions. This significantly increases healthcare costs and utilization, increasing the chances of poor quality or lack of treatment (33:00)

Resources and tips

The presenter notes a 2010 article published in Pediatrics as a good reference for GI issues in autism. The article talks about constipation, guidelines for evaluation in patients with high-risk, mitochondrial conditions, and medication (37:00). Mostafavi suggests using a joint provider who can obtain information on health history, blood and stool work, imaging studies, etc., to compile a complete picture of drivers and symptoms (38:15). Endoscopies can be particularly helpful in assessing GI disturbances in autism and Mostafavi provides a free endoscopy social story available in English, Spanish, Brazilian Portuguese, Arabic, and Haitian Creole (40:00)

Access Google Drive with social story documents – https://bit.ly/endoscopysocialstory

The speaker highlights that many behavior issues in autism are associated with pain, like irritability, oppositional behavior, meltdowns, and more. She notes the Understanding and Treating Challenging Behaviors in Autism book and how it describes causes of aggression and self-injurious behavior (SIB) in autism as having both physiological and social/behavioral causes. She lists pain behaviors that are often misinterpreted, highlighting that people can demonstrate one or many forms of behavior across different contexts (41:55). Mostafavi touches on the transition from pediatric to adult care and how difficult it can be for autistic people to acquire the necessary care and support (44:00)

Summary

The speaker summarizes the presentation, highlighting that the majority of people with autism have associated GI-related symptoms or conditions, the most common of which are DCBI, GERD, IBD, EGID, and ARFID. She emphasizes the importance of comprehensive evaluation with guidance from a gastroenterologist where necessary. Mostafavi reminds viewers that children with autism become autistic adults with similar care needs (46:20). She notes the ongoing complexities of discourse around the association between GI issues and autism before the Q&A (48:00)

Originally published on March 4, 2025.

About the speaker:

Mojdeh Mostafavi, MD is a dual-trained internist and pediatrician currently pursuing a pediatric fellowship in gastroenterology at Mass General Hospital for Children. With a profound personal connection to autism through her brother, Dr. Mostafavi’s dedication to advancing autism care is driven by her commitment to equitable healthcare and her expertise in integrating behavioral theory. Her passion lies in providing care across the lifespan, reflecting her belief in how today’s actions shape future experiences. Her work exemplifies a deep commitment to enhancing access and quality of care for all individuals, particularly those affected by autism.

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Autism and Trauma: Research Updates https://autism.org/autism-and-trauma-research-updates/ Tue, 11 Mar 2025 19:24:36 +0000 https://autism.org/?p=20814 Dr. Connor Kerns delivers research updates on the intersection of trauma and autism. She describes the relationship between childhood adversities, trauma, and mental health and highlights the need for trauma measurements that are specific to the autism community. The presenter considers the complexities of diagnosing PTSD in autism and details the development of

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Dr. Connor Kerns delivers research updates on the intersection of trauma and autism. She describes the relationship between childhood adversities, trauma, and mental health and highlights the need for trauma measurements that are specific to the autism community. The presenter considers the complexities of diagnosing PTSD in autism and details the development of the Childhood Adversity & Social Stress Questionnaire (CASS-Q). Kern’s ongoing work aims to describe the adversities of autistic youth and compare the CASS-Q PR symptom subscale to the DSM-5 PTSD descriptors. She discusses preliminary results revealing high validity and summarizes limitations and implications before the Q&A.

In this webinar:

0:30 – Disclosures and introductions
2:45 – Childhood adversity and trauma
8:00 – Experience vs diagnosis
13:00 – Complexities of diagnosis PTSD in autism
22:25 – Intersection of autism and trauma
24:00 – Childhood Adversity & Social Stress Questionnaire (CASSQ)
28:15 – Stress symptom subscale
35:45 – Preliminary results
40:35 – Adversity history profiles
47:00 – Validity and discussion
50:30 – Q&A

Childhood adversity and trauma

Kerns cites research showing that autistic individuals are more likely to experience maltreatment or adverse childhood experiences (ACE), including, but not limited to, physical, sexual, and emotional abuse, neglect, family or community violence, financial instability, loss of a loved one, and parental mental illness (2:45). The explains how DSM-5 trauma criteria don’t capture the full array of traumatic events. She provides a broader definition of stressful experiences, including any event, series of events, or set of circumstances experienced as harmful or life-threatening and that have lasting effects (4:36).

Kerns emphasizes the broad array of adverse experiences that can result in trauma, which are not included in the criteria from the DSM-5. She outlines research showing a positive correlation between the number of adversities and risk for mental and physical health conditions (6:30). Interestingly, research does not consistently point to an increased prevalence of PTSD in people with autism. The speaker cites a study that found that 28% of 350 youth with autism reported a history of maltreatment, with only 2.6% having a PTSD diagnosis (8:25). Kerns summarizes research showing that autistic people are more likely to have mental health difficulties and that adverse experiences contribute to mental health issues and other trauma symptoms. However, to date, very little research has been conducted on this intersection. 

Complexities of assessing PTSD in autism

To adequately address the assessment of PTSD in autism, we have to assess what “counts” as a traumatic event and ensure that we are measuring accurately (13:00). In a 2022 study, researchers conducted interviews with caretakers and people with autism about what they feel is traumatic. Findings highlight the need for additions to DSM criterion that include issues like social exclusion (bullying, isolation, stigma, restraint, loss of autonomy/opportunity) and traumatic incongruities (sensory trauma, reactions to change, social burnout) (14:30). Research also shows that DSM PTSD criteria lack cognitive, behavioral, and physical considerations associated with autism and that assessments rely too heavily on verbal expression (18:00). Behavioral overlap between traumatic symptoms and characteristics of autism, like emotional outbursts and social isolation, also make it difficult to diagnose. Kerns reiterates the need to approach the construct of traumatic stress and its assessment with care and intent (20:00). She warns that autism can overshadow PTSD, but there is also the potential to over-pathologize autism.

Intersection of autism and trauma

Kerns breaks the experience of trauma down into three phases: 1) adversities, 2) experience appraisal and effect, and 3) traumatic reactions. She describes a 2015 study that proposed autism may influence the type and amount of adversities youth experience as well as how they appraise and respond to those experiences, including their susceptibility to and expression of PTSD. Results showed that being autistic changes the rate and type of adversity, affects how one experiences them, and dictates which experiences will have lasting psychological distress. The speaker highlights that autism changes the way PTSD is expressed, underscoring the need for a measure tailored to the autism community  (22:25). She lists publications that show how autism moderates each phase of trauma: 

 Criterion/adversity events: 

Traumatic event experiences:

Traumatic stress outcomes:

Childhood Adversity & Social Stress Questionnaire (CASS-Q)

The presenter introduces the Childhood Adversity & Social Stress Questionnaire (CASS-Q), which measures adverse (stressful or traumatic) experiences and trauma symptoms in autistic youth via parent and self-report surveys. She details the mixed-method development approach for the CASS-Q and provides an overview of the CASS-Q PR (parent)  (24:00). Kern’s ongoing work aims to describe frequencies and characteristics of adversities in autistic youth and examine the extent to which CASS-Q PR symptom subscale reflects DSM PTSD descriptors (32:15). In her study, 729 parents took an initial query for trauma and those who reported ongoing trauma symptoms (n=298) completed the CASS-Q PR traumatic stress symptom subscale. Subscale items focus on changes in functioning following an event and include DSM domains and suicidality, regression of skills, increased self-injurious behavior, and increased reliance/reassurance seeking (28:15). All 729 parents also completed a 20-item adversity questionnaire measuring the frequency and impact of seven (7) autism-indicated and thirteen (13) traditionally-assessed adversities (31:00).

Preliminary results

Results show the most common adversities include bullying, death of a loved one, and many of the autism-indicated adversities like sensory stressors, being talked down to and made to feel like they don’t belong, being distressed by a continual change in daily life, and meltdowns and anxiety/hopelessness following social interactions (35:45). Adversities with the largest relative impact were not the most prevalent, underscoring the complexity of trauma in autism (38:00). Kerns notes that both traditional and autism-related adversities were positively correlated with behavior problems and outlines three profiles of adversity history: Low-level (~45%), Moderate (~47%), and Complex (~8%) (40:35) Parents who completed the symptom subscale reported the same types of adversities at a higher rate of occurrence (6 vs 3).

Kerns asserts that trauma in autism seems to fit the DSM 5 criteria, with some additional symptoms. In autism, she continues, we see many of the same criteria clustered in slightly different ways and with elevated reactivity. The speaker provides evidence for convergent and discriminant validity (47:00)

Conclusion

Kerns asserts that these findings provide initial support for the validity of the CASS-Q measure. Some of the autism-nominated symptoms were the most likely to be endorsed and have the most impact, supporting the measurement’s capacity for tailored approaches. She underscores that bullying was the most common detrimental adversity affecting this group (48:00). Study limitations and future directions are outlined (49:00) before the Q&A (50:30).

The speaker:

Dr. Connor Kerns has conducted and published studies on a broad array of topics, including the role of paternal age in ASD risk, the co-occurrence of childhood psychopathologies, and differential predictors of CBT efficacy for child anxiety. Her present research focuses on the overlap, assessment, and treatment of anxiety and autism spectrum disorders (ASD). Her ongoing projects aim to explore the varied presentation and phenomenology of anxiety in ASD and the implications of this variation for effective anxiety measurement and treatment. Dr. Kerns is also preparing to extend this work to the understudied area of traumatic events and their sequelae in youth with ASD. Another area of interest is the use of technology to facilitate the dissemination of empirically based treatments. Dr. Kerns is currently working to develop cost-effective, computer-assisted CBTs for youth with ASD and anxiety, interactive social stories to improve skill generalization in ASD, and video-enhanced ASD screening and educational tools. Her long-term goals include developing a parsimonious model of psychiatric co-occurrence to inform the design and dissemination of cross-diagnostic assessments and treatments that will improve child well-being and development.

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  • Diverse Teens Hands Star Concept

Understanding and Supporting Puberty in Autistic Girls and Boys

August 28th, 2025|Gender, Health, Medical Care, News, Parenting, Research, Research, Self Care, Sexuality, Social Skills, Webinar|

Blythe A. Corbett, Ph.D., discusses her lab's research on puberty, adolescence, and mental health in autistic individuals. She emphasizes puberty as a period of significant biological maturation involving several physical, biological, hormonal,

  • Person made of colorful data in the virtual reality

Gender Discomfort and Autism

June 16th, 2023|News|

"I think society has an expectation where you have to be male or female, or you can be somewhere in between [...]. But they don't get that, actually, there are many genders

  • Happy diverse young friends celebrating gay pride festival

LGBTQIA+ and Autism

June 13th, 2022|News, Parenting|

Contemporary research on the intersection of autism, sexuality, and gender identity asserts that autistic individuals are more likely to identify as LGBTQIA+ than the neurotypical population. Similarly, the prevalence of autism is

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Research Updates: GI Symptoms & Behavior https://autism.org/gi-behavior/ Wed, 05 Mar 2025 18:40:10 +0000 https://autism.org/?p=18033 Dr. Bradley Ferguson, PhD, a 2024 research grant recipient, discusses emerging research on the interaction of GI symptoms and stress in autism. He outlines recent investigations highlighting the connection between GI issues, cortisol levels, and internal and external behaviors. The speaker discusses electrodermal activity (sweat) as a way to measure and

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Dr. Bradley Ferguson, PhD, a 2024 research grant recipient, discusses emerging research on the interaction of GI symptoms and stress in autism. He outlines recent investigations highlighting the connection between GI issues, cortisol levels, and internal and external behaviors. The speaker discusses electrodermal activity (sweat) as a way to measure and predict problem behaviors and considers the potential for treating stress to alleviate GI symptoms. Ferguson underscores the importance of real-world data and outlines ongoing work funded by ARI, which uses smartwatches to monitor physical and social indicators of stress behavior over three weeks. He describes current hypotheses and potential implications for this work before the Q&A.

In this webinar:

1:30 – Stress and the gut
6:30 – Stress and communication
13:13 – Electrodermal activity
17:20 – Treating the stress response
25:30 – Ongoing work
31:47 – “CORE Autism” smartwatch app
37:45 – Implications
39:35 – Summary
42:00 – Q&A

The gut and stress

The prevalence of co-occurring gastrointestinal (GI) issues in autism ranges from 9 to 91%, with constipation being the most common (1:30). Research shows that many autistic people have a heightened stress response which activates the sympathetic nervous system – fight or flight mode – and inhibits stomach function. Ferguson and his team look at GI issues through a stress lens, suggesting that activation of the sympathetic nervous system is related to a lot of GI issues (3:00). He outlines past work that shows a positive relationship between levels of cortisol, a stress marker, and constipation (4:30). Similar work shows that having co-occurring anxiety significantly altered parasympathetic nervous system activity in the lower GI tract, meaning that anxiety is related to GI symptoms in autism (5:40)

In a 2019 study, Ferguson and colleagues used caregiver questionnaires for 340 autistic children and adolescents to assess correlations between GI conditions and behavior issues (6:30). Results showed that across all ages, 65% experienced constipation, 50% experienced stomach aches, 29% experienced diarrhea, and 23% experienced nausea, where 53% were taking medications for other conditions (ADHD, seizures), and 93% were not taking any GI meds (9:30). In children between the ages of 1 and 5, nausea significantly predicted aggression. Ferguson says that this correlation is likely to do with the children’s inability to communicate their nausea, which leads them to act out. In participants between 6 and 18 years old, anxiety, withdrawn behavior, and somatic complaints were 11% more likely to experience aggression, stomachaches, and nausea, respectively, and less likely to experience certain other GI symptoms (10:55).

The speaker summarizes research findings to date, highlighting that non-verbal young children may use aggression to communicate somatic complaints and that older children have more internalizing behaviors associated with GI symptoms. 

Associations between cytokines, endocrine stress response, and gastrointestinal symptoms in autism spectrum disorder (Ferguson et al., 2016)

Psychophysiological Associations with Gastrointestinal Symptomatology in Autism Spectrum Disorder (Ferguson et al., 2016)

The Relationship Among Gastrointestinal Symptoms, Problem Behaviors, and Internalizing Symptoms in Children and Adolescents With Autism Spectrum Disorder (Ferguson et al., 2019)

Electrodermal activity and problem behavior

Electrodermal activity, or skin sweat, is part of the stress response triggered by the sympathetic nervous system. Using a smartwatch, researchers were able to track skin conductance (sweat) from baseline to post-behavior levels (13:13). Results showed a rise in sweat about 60% of the time prior to a problem behavior occurring and a return to baseline afterward about 45% of the time. The average rise in skin conductance before a behavior was around 10 minutes (15:15)

Examining the Association Between Electrodermal Activity and Problem Behavior in Severe Autism Spectrum Disorder: A Feasibility Study (Ferguson et al., 2019)

Treating the stress response

Ferguson and his team assessed a trial of propranolol, a beta blocker (blocks stress response), in children and youth with autism. Results showed a significant reduction in anxiety for the propranolol group compared to controls (17:20). He outlines an fMRI study on the relationship between GI issues and amygdalar activity. The study revealed that participants taking propranolol (which crosses the blood-brain barrier) showed a neutral relationship between GI symptoms and amygdala activity. In contrast, those taking nadolol (which does not cross the blood-brain barrier) or a placebo showed a positive correlation. Ferguson explains that these findings indicate that propranolol is blocking the stress response, which may be related to GI issues (19:25). Future research will include transcutaneous vagus nerve stimulation (tVNS) to test the effect of parasympathetic nervous system (rest and digest) activation on GI symptoms (23:45)

Ongoing work

The research outlined to this point has been strictly lab-based, and the speaker highlights the need for real-world “ecological” monitoring of stress behavior. Lab studies are often stressful in and of themselves, so they may not reflect real-world functioning. Ferguson’s ongoing study, funded by ARI, aims to examine differences in verbal social communication data from 30 autistic people with GI symptoms and 30 without over a three-week period. Data will be collected using smartwatches that track pulse-rate variability, or the time variation between heartbeats, measured with photoplethysmography (PPG). Researchers will also examine differences in autonomic nervous system functioning in relation to GI symptoms (25:30)

Verbal and social activity will be recorded on a smartwatch app that Ferguson and his team developed called “CORE Autism (31:47).” The app measures the total time spoken by a participant. It has reached 90% agreement between what researchers hear and what the algorithm hears (35:35). The speaker underscores the importance of real-world data and how much we miss with typical laboratory-based questionnaires. Researchers hypothesize that pulse rate variability will be significantly lower for the group with GI issues, indicating a higher stress response. They also hypothesize that there is less social communication among the GI group, possibly due to increased stress (36:48).

Ferguson emphasizes that findings from this study will provide real-world evidence of stress and sociability, allowing a potentially different take on the connection between GI issues and stress for autistic people. For example, if stress is heightened in the GI group, implications for treatment could be huge. The presenter notes that more research could be done to address what happens to GI symptoms when stress is addressed and vice versa (37:45). This study will be finished in 2026. 

Summary

Ferguson reviews the presentation, highlighting that GI symptoms like constipation are prevalent in autism and often associated with stress response and internalizing behaviors, which may differ by age. The stress response may also precede problem behaviors in autism, providing treatment options based on stress reduction via pharmacological, vagal, and behavioral avenues. While preliminary data are exciting, more research is needed in these areas (39:35). Ferguson provides thanks and acknowledgments before the Q&A, where he discusses enteroception, SSRIs, nutrition, smartwatch usage, and more (42:00)

Originally published November 19, 2024

About the speaker:

Dr. Bradley Ferguson, PhD is an Assistant Research Professor, MU School of Medicine. He is currently studying the association between immune, endocrine, and psychophysiological markers of stress and gastrointestinal disorders in those with autism spectrum disorder. He is also leading the psychophysiological biomarker assessment for predictors of response to medications, and also the relationship to aberrant behaviors.

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Autism and Gastrointestinal Comorbidities – Research Updates

March 20th, 2025|Anxiety, Gastrointestinal, Health, Medical Care, Meltdowns, News, Nutrition, Research, Self Care, Self Injury, Self-Injury, Sensory, Webinar|

Mojdeh Mostafavi, MD, describes gastrointestinal conditions commonly seen in individuals with autism, including gastroesophageal reflux disease (GERD), inflammatory bowel disease (IBD), Eosinophilic GI disease (EGID), avoidant/restrictive food intake disorder (ARFID), disorders of

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Research Updates: At the Crossroads of Infection, Inflammation, and Mental Health https://autism.org/pans-updates/ Sat, 18 Jan 2025 20:29:25 +0000 https://autism.org/?p=18685 Jennifer Frankovich, MD, MS, dives into the intersection of infection, inflammation, and mental health. She discusses the increase in recognition of this critical overlap over the last decade, highlighting how systemic inflammatory conditions have the highest rate of co-occurring psychiatric disorders. The speaker outlines ten inflammatory diseases that frequently co-occur with

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Jennifer Frankovich, MD, MS, dives into the intersection of infection, inflammation, and mental health. She discusses the increase in recognition of this critical overlap over the last decade, highlighting how systemic inflammatory conditions have the highest rate of co-occurring psychiatric disorders. The speaker outlines ten inflammatory diseases that frequently co-occur with mental health conditions, including spondyloarthritis, psoriasis/psoriatic arthritis, Behçet’s Syndrome, Sjögren’s disease, Scleroderma, CNS Vasculitis, Sydenhams’ Chorea, and Lupus. Frankovich underscores the connection of Streptococcal infections to many of these inflammatory conditions, noting their similarities to PANS and challenges with diagnosis. She provides thanks and acknowledgments before the Q&A. 

This is a follow-up to our June 12, 2024 webinar featuring Dr. Jennifer Frankovich, Ayan Mondal, Ph.D., and Noor A. Hussein, Ph.D.

In this Webinar

1:20 – Inflammation and mental health
3:50 – Spondyloarthritis (SpA)
11:00 – Psoriasis/Psoriatic Arthritis
16:05 – Behçet’s Syndrome
19:25 – Brain parenchymal disease
21:15 – Non-parenchymal disease
22:25 – Sjögren’s disease
24:05 – Scleroderma
25:50 – CNS Vasculitis
26:25 – Sydenhams’ Chorea
37:00 – Erythema Marginatum
38:50 – Strep infections and mental health
42:00 – Lupus
44:55 – Q&A

Inflammation and mental health

Over the last decade, recognition of the overlap between rheumatological/inflammatory disorders and mental health conditions has significantly increased. Frankovich notes common inflammatory diseases that co-occur with psychiatric symptoms, including those caused by small-vessel vasculitis, autoimmune encephalitis, basal ganglia inflammation, and white matter inflammation (1:20). Most commonly, she continues, systemic inflammatory conditions like psoriasis/psoriatic arthritis, and irritable bowel syndrome (IBS) have the highest rates of co-occurring psychiatric disorders (3:30). She outlines ten (10) specific disorders, how they present, and how clinicians/practitioners can test for them.

The odd couple?—Hardly: The emerging overlap between rheumatology and psychiatry (Taylor & Jain, 2017)

Spondyloarthritis 

Spondyloarthritis (SpA) can cause microscopic spinal inflammation that is not often perceptible on imaging until decades later. It is characterized by pain and stiffness in the morning and after prolonged stationary positions. Frankovich explains that 40% of patients with SpA also experience depression, anxiety, fatigue, and brain fog and that adults with SpA have a higher prevalence of OCD, anger/hostility, and deliberate self-harm versus controls (3:50). The speaker notes that children with psychiatric diagnoses may not be able to articulate pain and stiffness, so practitioners must look for clues such as stiffness walking, axial and peripheral stiffness, iliac pain and tenderness, and specific foot pains. Psoriasis and bowel inflammation also commonly co-occur with SpA. Frankovich underscores the high heritability of SpA and suggests observing parental symptoms when diagnosing children (7:15)

Psoriasis/Psoriatic Arthritis

Psoriasis and psoriatic arthritis have significant overlap with psychiatric disorders, especially bipolar, depression, and anxiety. The speaker explains that pain from arthritis can seem out of proportion, so patients are often dismissed. Frankovich notes specific ultrasounds that can be used to identify inflammation in discrete areas of the body and reiterates how psychiatric conditions may keep patients, especially children, from complaining of their pain, making a diagnosis even more challenging (11:00). Common sites for psoriasis include behind the ears, on the scalp, around the belly button. She warns against mistaking Onycholysis for fungal nail infections and notes that streptococcal infections can trigger arthritis flares (13:35)

Behçet’s Syndrome

The speaker describes Behçet’s Syndrome as a multisystem inflammatory disease where 10% of patients have neurological diseases perceptible on an MRI and 40% have psychiatric disorders. Other symptoms can include recurrent oral ulcers, ocular inflammation in the anterior portion of the eye, and potential scarring from genital ulcers. Behçet’s Syndrome is a type of transient arthritis where flareups, often triggered by intense immune responses to infection, can last from one to three weeks (16:05). Frankovich notes that when vascular inflammation is present in both arteries and veins, this nearly always indicates Behçet’s Syndrome. Pathergy, or blistering at the blood draw site, is also a strong indicator (18:25)

Brain parenchymal disease

Brain parenchymal disease (BPD) is characterized by a subacute onset of multi-focal inflammatory legions, which an MRI can miss if it is not conducted at the time of a new deficit. In many cases, the MRI reflects non-specific white matter changes that do not rule out BPD in and of themselves. Some patients also suffer from headaches, behavior changes, and cognitive dysfunction, which can lead to temporary encephalopathy, seizures, and psychosis. The presenter underscores the importance of early diagnosis and treatment but notes that BPD is difficult to diagnose because legions are temporary and appear in different places each time (19:25)

Non-parenchymal disease

Non-parenchymal diseases involve the brain’s venous systems. Cerebral venous thrombosis, or severe headaches, must be assessed using imaging that highlights the venous system (e.g., MRV). Non-parenchymal diseases often co-occur with fibromyalgia (18 – 37%), parietal cell autoantibodies, vitamin deficiencies (especially B,) and bowel ulcers or IBS (21:15)

Sjögren’s disease

Frankovich defines Sjögren’s disease as a systemic rheumatologic condition that often presents with dry eyes and mouth and a lot of autonomic nervous system dysfunction such as altered vascular tone, esophageal contractility (trouble swallowing), cardiac rhythm abnormalities, and neuropathic symptoms (i.e., burning, tingling, or numbness). Co-occurring psychiatric disorders make it challenging to self-advocate. The speaker suggests running a mucosal biopsy of the lip to assess salivary gland inflammation if Sjögren’s disease is suspected (22:25)

Scleroderma

Scleroderma is a systemic sclerosis that causes widespread vascular dysfunction and progressive fibrosis of the skin and internal organs. Over many years, the speaker explains, a person’s skin starts to harden. Early signs in children include Raynauds (cold, white hands) and abnormal nail fold capillaroscopic. She highlights that manifestation may precede the full disease by years, so it is critical to follow patients closely (24:05)

Personality structure disturbances and psychiatric manifestations in primary Sjögren’s syndrome (Drosos et al., 1989)

CNS Vasculitis

CNS vasculitis is a very rare type of inflammation focused on the brain. It is perceptible on MRI scans and should be considered when children present with new-onset headaches and behavior changes (25:50)

The spectrum of CNS vasculitis in children and adults (Twilt & Benseler, 2012)

Sydenhams’ Chorea

Sydenhams’ Chorea (SC) presents with three critical components: emotional lability, hypotonia (weak muscles), and chorea (involuntary, brief, random, and irregular movements of the limbs and face). In children, this can look like continuous restlessness (26:25). Frankovich explains that accompanying psychiatric symptoms are similar to what we see in PANS. For example, 60% of patients with SC have OCD at onset, and 100% have it at relapse. Other symptoms include outbursts of inappropriate behavior or mismatched emotions (easy crying or inappropriate laughing), irrational fears that can lead to delusions, anxiety, personality changes, and night terrors (28:08). Other presentations include difficulty keeping arms up or hyperactive reflexes (33:40)

The presenter notes that the line between what is and is not SC is very blurry, making it hard to detect and diagnose. One of the earliest studies (1926) notes that, in children, nuanced chorea is always Sydenhams, so practitioners should always treat for strep infection and clear it out of the house. According to the study, emotional lability is the most constant observation, along with extreme personality changes where individuals become aggressive and irritable, which is very similar to how PANS presents (30:00)

Children often cover up their chorea, so clinicians must actively look for muscle use abnormalities. Simple tests for chorea include the milkmaid’s grip and darting tongue. Because psychiatric symptoms like OCD can start two to four weeks before chorea, children who present with acute-onset OCD should be re-evaluated over at least one month (31:25). The onset of chorea can occur anywhere between one and eight months after a strep infection, meaning that ASO and DNASE titers may be normal during assessments (33:40)

The presence of acute rheumatic fever can also support an SC diagnosis, but it is not necessary. However, the speaker warns that mild cases of SC without other manifestations of acute rheumatic fever may be mistakenly ascribed to behavior or emotional disorders, restlessness, or clumsiness. She reiterates the need for careful evaluation (36:10)

Neuropsychiatric Aspects of Chorea in Children (Ebaugh, 1926)

The Prevalence of Neuropsychiatric Disorders in Sydenham’s Chorea (Ridel et al., 2010)

Obsessive compulsive behavior, hyperactivity, and attention deficit disorder in Sydenham chorea (Maia et al., 2005)

High prevalence of obsessive-compulsive symptoms in patients with Sydenham’s chorea. (Swedo et al., 1989)

Obsessive-Compulsive and Related Symptoms in Children and Adolescents With Rheumatic Fever With and Without Chorea: A Prospective 6-Month Study (Asbahr et al., 1998)

Sydenham’s Chorea: Physical and Psychological Symptoms of St Vitus Dance (Swedo et al., 1993)

The Emotional Correlates of Sydenham’s chorea (Freeman et al., 1963)

Mental Symptoms of Acute Chorea (Diefendor, 1912)

Rheumatic fever (Stollerman, 1997)

Erythema Marginatum 

Erythema Marginatum is a rash or skin lesion that occurs in SC and is brought out with heat (warm blankets or bath). Frankovich describes a case study of a 16-year-old with a long history of regressive behavior deterioration. He was initially diagnosed with SC; however, due to a lack of valve involvement, the diagnosis was removed. When he later presented with catatonia, clinicians wrapped him in warm blankets for 10 – 20 minutes and then observed his torso and limbs for rash patterns. The speaker notes that Erythema Marginatum patterns change every few minutes and that no other condition presents with such a rash (37:00)

Streptococcal infections, inflammation, and mental health

A recent population-based study on the association of streptococcal infection and mental disorders found the primary outcome of strep infections was a diagnosis of mental disorders, OCD, or tics (38:50). The speaker says it can be difficult to know if strep played a role in any child’s behavior, so we must rely on epidemiologists continue educating practitioners about the link between strep and mental disorders, especially OCD. 

A smaller study that compared school strep swabs to behaviors found a high correlation between positive strep throat cultures and the presence of tics, adventitious movements, and problem behaviors. Further, if the strep was recurring, the risk for abnormal movements was increased (40:00). Many animal models have also shown this correlation. 

 Association of streptococcal throat infection with mental disorders (Orlovska et al., 2017)

Relationship of Movements and Behaviors to Group A Streptococcus Infections in Elementary School Children (Murphy et al., 2007)

CNS Autoimmune Disease after Streptococcus Pyogenes Infections: Animal Models, Cellular Mechanisms and Genetic Factors (Cutforth et al., 2016)

Lupus 

Lupus, though a common condition, is relatively rare in children. However, 25% of children with Lupus also have neuropsychiatric symptoms such as headaches (66%), psychosis (36%), and cognitive dysfunction (27%). Similar to PANS, Lupus patients commonly have arthritis, small vessel vasculitis, and high immune complexities. They are also 10 – 15 times more likely to have OCD compared to patients without Lupus (42:00)

Resources

Frankovich thanks viewers and acknowledges research contributors. For more information on her research, visit med.stanford.edu/PANS. During the Q&A (44:55), the speaker answers questions about diagnosis, overlapping conditions, and much more.

Originally posted on October 1, 2024

The speakers:

Jennifer Frankovich: 

Dr. Frankovich is a Clinical Professor in the Department of Pediatrics, Division of Allergy, Immunology Rheumatology (AIR) at Stanford University/Lucile Packard Children’s Hospital (LPCH). Her clinical expertise is in systemic inflammatory and autoimmune diseases that co-occur with psychiatric symptoms. She completed her training in pediatrics, pediatric rheumatology, and clinical epidemiology at Stanford University/LPCH. She directs the Stanford Immune-Behavioral Health Program (2012- present) where she and her psychiatry/psychology collaborators have created a longitudinal clinical database and biorepository of patient and healthy control biospecimens. In addition to generating clinical data to better understand immune-behavioral health conditions, she is collaborating with basic science labs who aim to understand the immunological underpinnings of post-infectious neuropsychiatric conditions including PANS and related conditions.

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