Parenting - Autism Research Institute https://autism.org/category/parenting/ Advancing Autism Research and Education Wed, 25 Mar 2026 22:39:26 +0000 en-US hourly 1 https://wordpress.org/?v=6.9.4 COMPASS: A Caregiver–Teacher Partnership Model for Improving Outcomes in Autistic Children and Youth https://autism.org/compass-webinar/ Tue, 24 Mar 2026 21:20:39 +0000 https://autism.org/?p=24287 The Collaborative Model for Promoting Competence and Success (COMPASS) is an evidence-based consultation framework designed to enhance outcomes for autistic children and youth by strengthening caregiver–teacher partnerships. Developed by Ruble and colleagues, COMPASS emphasizes individualized education planning, shared decision-making, and implementation support across home and school contexts. The model

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The Collaborative Model for Promoting Competence and Success (COMPASS) is an evidence-based consultation framework designed to enhance outcomes for autistic children and youth by strengthening caregiver–teacher partnerships. Developed by Ruble and colleagues, COMPASS emphasizes individualized education planning, shared decision-making, and implementation support across home and school contexts. The model guides teams through structured goal setting, coaching, and progress monitoring aligned with the child’s strengths and needs and Individual Education Program. Empirical studies have shown that COMPASS improves intervention fidelity, child goal attainment, and collaborative engagement, making it a promising approach for bridging gaps between families and educators in autism support services.

Handouts of the slides are online HERE
Manuscript references (mentioned during the talk) are online HERE

About the speaker:

Dr. Lisa Ruble is the Earl F. Smith Distinguished Professor of Special Education and Autism at the Teachers College at Ball State University. Dr. Ruble teaches classes in autism and intervention. She is a past recipient of the New Investigator Award from NIMH. In 2002, Dr. Ruble established the STAR Program at the University of Louisville and, in 1998, helped establish TRIAD at Vanderbilt University. Her research program is based on these past experiences as a licensed psychologist, where she developed and provided social skills and behavioral interventions, school consultation and training, and parent training. These experiences influenced her interest in services research and the study of issues involved in the provision of evidence-based practices in community-based settings.

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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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Gene Therapy for Mutations in the IQSEC2 Gene https://autism.org/gene-therapy-for-mutations-in-the-iqsec2-gene/ Tue, 17 Mar 2026 17:26:30 +0000 https://autism.org/?p=26949 The IQSEC2 protein is a guanine nucleotide exchange factor for Arf6.  Pathogenic variants in the X-linked IQSEC2 gene are associated with drug-resistant epilepsy, severe intellectual disability, and autism.  The vast majority of disease-causing variants introduce premature termination codons in the IQSEC2 gene, resulting in little or no IQSEC2 protein being

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The IQSEC2 protein is a guanine nucleotide exchange factor for Arf6.  Pathogenic variants in the X-linked IQSEC2 gene are associated with drug-resistant epilepsy, severe intellectual disability, and autism.  The vast majority of disease-causing variants introduce premature termination codons in the IQSEC2 gene, resulting in little or no IQSEC2 protein being produced.   We sought to determine if an adeno-associated virus (AAV) containing the IQSEC2 gene could rescue abnormal phenotypes in mice in two different Iqsec2 mouse models with premature Iqsec2 termination codons resulting in a knockout of Iqsec2 gene expression and in mice with a A350V Iqsec2 missense mutation.  In Iqsec2 knockout mice, the AAV significantly improved growth, corrected behavioral abnormalities, and normalized the seizure threshold.  We propose that success in the Iqsec2 knockout mice warrants a proof-of-concept study for gene replacement therapy in boys with IQSEC2 premature termination variants.

This is a joint presentation with the World Autism Organisation.

Originally published March 18, 2026

About the speaker:

Prof. Andrew Levy received his BA Summa Cum Laude from Yale University in Molecular Biophysics and Biochemistry in 1982. He received a MSTP scholarship for his MD PHD training (1982-1990) at Johns Hopkins Medical School performing his PHD under Nobel Laureate Daniel Nathans working on the identification of a growth factor now known as Vascular Endothelial Growth Factor. He completed internal medicine residency at Johns Hopkins Hospital (1990-1992) and a cardiovascular fellowship at Brigham and Women’s Hospital at Harvard Medical School (1992-1996).  He is a tenured professor at Technion Faculty of Medicine, Technion Israel Institute of Technology in Haifa, Israel. His current focus of research is on developing treatments for IQSEC2 disease – a neurodevelopmental disorder associated with drug-resistant epilepsy, autism, and severe intellectual disability. Founder of IQSEC2 Research and Advocacy Foundation, a volunteer group of parents working towards providing support for parents, increasing awareness of IQSEC2.

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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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EMDR Therapy and Autism https://autism.org/emdr-therapy-and-autism/ Tue, 17 Feb 2026 18:21:56 +0000 https://autism.org/?p=25478 Presentation Handout available HERE Amanda Tami, LPC, BCBA, talks about Eye Movement Desensitization and Reprocessing (EMDR) therapy and its use for autistic individuals. She discusses how traumatic memories can get "stuck" in the body and relived when we are exposed to similar stimuli. Tami explains how EMDR works as

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Presentation Handout available HERE

Amanda Tami, LPC, BCBA, talks about Eye Movement Desensitization and Reprocessing (EMDR) therapy and its use for autistic individuals. She discusses how traumatic memories can get “stuck” in the body and relived when we are exposed to similar stimuli. Tami explains how EMDR works as a form of adaptive information processing that allows the brain and body to let go of these traumatic memories and make room for feelings of safety and calm. The speaker emphasizes the need for more research around trauma and autism, underscoring that living in a world that wasn’t built for you is innately traumatic. She outlines barriers to EMDR therapy and details modifications for autism. Tami gives a clinical example of using modified-EMDR treatment for an autistic patient before the Q&A.

More information on EMDR and providers near you – EMDR International Association

About the speaker:

Professional headshot of a person

Amanda Tami, LPC, BCBA, is a Licensed Professional Counselor and Board Certified Behavior Analyst at the Johnson Center for Child Health and Development. She provides behavior analytic services and psychotherapy to neurodivergent individuals and their families. She has experience treating co-occurring conditions such as anxiety, depression, and trauma. Amanda is certified in EMDR therapy and its applications to children. Amanda has provided training and consultation locally, nationally, and internationally to parents and providers on various topics including building emotion regulation, support across the lifespan, sexuality, and trauma-informed ABA. Amanda lives in Austin with her husband and son and loves cats, crosswords, and Below Deck marathons.

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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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Disparities in Autism Ascertainment in Black Children https://autism.org/disparities-in-autism-ascertainment-in-black-children/ Wed, 21 Jan 2026 19:53:23 +0000 https://autism.org/?p=23348 Handouts are available HERE You can access the ongoing study Dr. Dickerson discusses during the Q&A HERE Learn about disparities in autism ascertainment in Black children and accessible treatment models that can help reach underserved populations. About the speaker: Aisha S. Dickerson, PhD, MSPH, is

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Handouts are available HERE

You can access the ongoing study Dr. Dickerson discusses during the Q&A HERE

Learn about disparities in autism ascertainment in Black children and accessible treatment models that can help reach underserved populations.

About the speaker:

Aisha S. Dickerson, PhD, MSPH, is an associate professor at Johns Hopkins Bloomberg School of Public Health. She is an environmental neuroepidemiologist with primary research interests in environmental risk factors for neurodevelopmental and neurodegenerative disorders. Specifically, she studies combined environmental and occupational exposures across the life course and subsequent individual and transgenerational neurological outcomes, including autism spectrum disorder, amyotrophic lateral sclerosis, and dementia. Between earning her BS and MSPH, Dr. Dickerson worked for the Jefferson County Department of Health where she served on emergency response teams after Hurricane Katrina and during the H1N1 (Swine Flu) pandemic. Prior to joining BSPH, she also completed postdoctoral training at the Environmental Protection Agency (EPA) and the Harvard T.H. Chan School of Public Health. Currently, her research investigates joint environmental and psychosocial stressors in under resourced communities. She is the PI of an NIEHS-funded study of gene-environment interaction with parental occupation exposures and autism in offspring. She also has several ongoing studies of joint exposures utilizing data from the National Health and Aging Trends Study (NHATS), the Health and Retirement Study (HRS), and the Environmental influences of Child Health Outcomes (ECHO) project.

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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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Holidays: Merry, not Meltdown-y. Autism-Friendly Navigation of the Holiday Season. https://autism.org/holidays-and-autism-webinar/ Wed, 10 Dec 2025 23:45:05 +0000 https://autism.org/?p=25377 Holidays can be challenging for autistic individuals. Amanda Tami, LPC, BCBA, will share tips, tricks, and suggestions to help you plan for a merry holiday season. Handouts available HERE More information: Planning for the holiday season - Resource Page Choosing toys for a child with autism - Article Originally published

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Holidays can be challenging for autistic individuals. Amanda Tami, LPC, BCBA, will share tips, tricks, and suggestions to help you plan for a merry holiday season.

Handouts available HERE

More information:

Planning for the holiday season – Resource Page

Choosing toys for a child with autism – Article

Originally published on December 10, 2025

About the speaker:

Professional headshot of a person

Amanda Tami, LPC, BCBA, The Johnson Center for Child Health and Development.

Amanda Tami is a Licensed Professional Counselor and Board Certified Behavior Analyst at the Johnson Center for Child Health and Development. She provides behavior analytic services and psychotherapy to neurodivergent individuals and their families. She has experience treating co-occurring conditions such as anxiety, depression, and trauma. Amanda is certified in EMDR therapy and its applications to children. Amanda has provided training and consultation locally, nationally, and internationally to parents and providers on various topics including building emotion regulation, support across the lifespan, sexuality, and trauma-informed ABA. Amanda lives in Austin with her husband and son and loves cats, crosswords, and Below Deck marathons.

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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Disordered Eating and Autism – Obesity https://autism.org/disordered-eating-obesity/ Tue, 01 Jul 2025 19:38:34 +0000 https://autism.org/?p=18597 Francesca Solmi, Ph.D., discusses the intricate link between autism and eating disorders. She outlines common eating disorders, noting their overlapping symptoms and similarities to autism traits. The speaker explores potential mechanisms for the connection between eating disorders and autism, including communication difficulties, sensory sensitivities, and emotion regulation. Solmi emphasizes Avoidant/Restrictive Food Intake

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Francesca Solmi, Ph.D., discusses the intricate link between autism and eating disorders. She outlines common eating disorders, noting their overlapping symptoms and similarities to autism traits. The speaker explores potential mechanisms for the connection between eating disorders and autism, including communication difficulties, sensory sensitivities, and emotion regulation. Solmi emphasizes Avoidant/Restrictive Food Intake Disorder (ARFID) and its relevance to autism, underscoring the need for more research and services for this often overlooked condition. The presenter considers future research directions before the Q&A.  

Handouts are online HERE

In this webinar:

1:30 – Common eating disorders
8:00 – Autism and eating disorders
11:00 – Trajectories of autistic traits and eating disorders
20:00 – Potential linking mechanisms
28:00 – Emotion regulation
34:50 – Avoidant/Restrictive Food Intake Disorder (ARFID) and Autism
40:00 – Future research
42:00 – Q&A

Overview of Eating Disorders 

Solmi defines eating disorders as severe psychiatric conditions that typically emerge in early to mid-adolescence. She describes common eating conditions, including Anorexia Nervosa, Bulimia Nervosa, Binge Eating Disorder, and OSFED (Other Specified Feeding or Eating Disorder), highlighting the significant symptom overlaps across conditions (1:35).

  • Anorexia Nervosa – frequently the youngest age of onset. Characterized by an intense fear of weight gain, extreme dietary restriction, and often low body weight. Some individuals may also engage in bingeing and purging.
  • Bulimia Nervosa – slightly later onset and involves episodes of binging followed by compensatory behaviors like self-induced vomiting or excessive exercise.
  • Binge Eating Disorder – the most recently recognized diagnosis. It involves bingeing without compensatory behaviors, often accompanied by feelings of shame or guilt.
  • OSFED (Other Specified Feeding and Eating Disorder) is a residual category for individuals whose symptoms don’t fully meet the criteria for other diagnoses. 

The speaker emphasizes the severity of these conditions, noting their association with higher mortality rates (5:00). Despite this, eating disorders are often under-researched compared to other mental health disorders. She also notes their high prevalence in girls and women, suggesting underdiagnosis in men (6:30).  

The Link Between Autism and Eating Disorders 

Solmi discusses the connection between autism and eating disorders. A study by Westwood and colleagues revealed elevated autistic traits in people with anorexia nervosa. Similarly, people with autism and anorexia nervosa mentioned rigidity or rules, intense interests, difficulties recognizing hunger, and social difficulties (8:00). A significant challenge in this research, the presenter explains, is distinguishing between pre-existing autistic traits and those that may be mimicked by severe malnutrition in anorexia nervosa. 

Autism Spectrum Disorder in Anorexia Nervosa: An Updated Literature Review (Westwood et al., 2016)

Research on Autistic Traits and Disordered Eating Trajectories

Solmi presents findings from a study investigating whether autistic traits were present before the onset of disordered eating behaviors (11:00). Researchers found that children who later developed disordered eating behaviors exhibited higher levels of autistic traits at age seven, and these differences persisted throughout adolescence. The speaker asserts that these findings suggest autistic traits may precede the onset of disordered eating (17:00). The study also revealed that more severe eating disorder symptoms correlated with higher autistic trait scores from age seven onwards, indicating a strong association with more severe presentations of eating disorders.

Trajectories of autistic social traits in childhood and adolescence and disordered eating behaviours at age 14 years: A UK general population cohort study (Solmi et al., 2020)

Potential Mechanisms Linking Autism and Eating Disorders 

The presenter explores several mechanisms as potential links between autism and eating disorders. For example, as friendships become more important in adolescence, struggles with social interaction can exacerbate mental health difficulties, with eating disorders potentially serving as a coping mechanism. Children with social communication difficulties may also be more susceptible to bullying, which can lead to internalized weight-stigmatizing thoughts and behaviors like dieting (20:00). Young people with autism often exhibit more sedentary behaviors compared to their peers, which can increase BMI and vulnerability to weight-based stigmas (23:00)

Emotion regulation difficulties are also common in both autism and eating disorders. Solmi outlines a recent study showing that individuals who later developed anorexia nervosa symptoms exhibited less improvement in emotion regulation skills from early to mid-childhood compared to their peers, where differences emerged around age five (30:00). Further, in girls, social cognition explained around half of the association between emotion regulation difficulties and disordered eating. The association in boys was less clear, likely due to smaller sample sizes (35:00).

The presenter notes that sensory sensitivities, a core aspect of avoidant/restrictive food intake disorder (ARFID), are frequently reported by people with anorexia nervosa. For example, in a qualitative study on autism and anorexia in women, emerging themes included difficulty with sensory sensitivities, social interactions and relationships, and challenges with emotions (33:00)

A mixed-methods approach to conceptualizing friendships in anorexia nervosa (Datta et al., 2021)

Autism Spectrum Disorder and Obesity in Children: A Systematic Review and Meta-Analysis (Sammels et al., 2022)

Emotional dysregulation in childhood and disordered eating and self-harm in adolescence: prospective associations and mediating pathways (Warne et al., 2022)

“For Me, the Anorexia is Just a Symptom, and the Cause is the Autism”: Investigating Restrictive Eating Disorders in Autistic Women (Brede et al., 2020)

Avoidant/Restrictive Food Intake Disorder (ARFID) and Autism

Solmi discusses ARFID, a disorder now included in the eating and feeding disorder family, noting its relevance to autism. Its three main aspects include limited interest in food, sensory sensitivities (e.g., avoiding specific foods due to texture), and concerns about adverse consequences from eating (34:50). The speaker emphasizes the limited epidemiological research on ARFID, the lack of services (especially for people who are not severely underweight), and the need for more studies to understand its prevalence, risk factors, and effective treatments (37:00).

Future Research Directions 

According to the presenter, future research should aim to understand the complex links between autism and eating disorders more comprehensively. Key areas of investigation include the connections between sensory sensitivities and ARFID, gender differences in the association of autistic traits and eating disorders, links between other autistic traits and different eating disorder presentations, physiological factors like the gut-brain response, and age of autism diagnosis in those with and without eating disorders. These avenues of research, Solmi asserts, will improve diagnostic tools and help to develop better prevention and care strategies (40:00). The speaker summarizes main points before the Q&A (42:20)

The speaker:

Francesca Solmi, PhD, is a senior epidemiologist serving as a principal research fellow at University College London, with over a decade of experience researching risk factors for adolescent psychiatric disorders. In her research, she uses extensive general population cohort study data, population registers, linked electronic health records, and epidemiological designs for causal inference in observational data. She has published scientific papers in high-impact factor journals, informing policy and scientific funding priorities.

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  • A female doctor or a medical specialist asks a patient about abdominal pain, dysentery from eating disorders. Unclean, undercooked, causing pain. The concept of rejuvenation therapy, treatment

Disordered Eating and Autism – Obesity

July 1st, 2025|Autism Spectrum Disorders, Biomarkers, Gastrointestinal, Gastrointestinal, Health, Medical Care, News, Parenting, Research, Research, Self Care, Ways to Help, Webinar|

Francesca Solmi, Ph.D., discusses the intricate link between autism and eating disorders. She outlines common eating disorders, noting their overlapping symptoms and similarities to autism traits. The speaker explores potential mechanisms for

  • Fruits and vegetables

Food and Sleep

March 1st, 2022|Nutrition, Sleep, Ways to Help, Webinar|

Vicki Kobliner, RDN, CD-N, describes nutritional and lifestyle strategies for improving sleep and overall health for autistic people. She discusses circadian rhythm and balancing cortisol and melatonin cycles throughout the day.

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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.

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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.

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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.

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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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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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