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)

•  Exploring the Heterogeneity of Self-Injurious Behaviors in Autistic Youth: Patterns, Predictors, and Implications for Intervention (Ferguson et al., 2025)

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). 

• A ‘choice’, an ‘addiction’, a way ‘out of the lost’: exploring self-injury in autistic people without intellectual disability (Moseley et al., 2019)

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). 

• https://www.youtube.com/watch?v=0cq5RuE8SXk

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.

• https://academic.oup.com/book/1248/chapter/140180019

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:

• Article by Dr. Ferguson mentioned in the talk: https://onlinelibrary.wiley.com/doi/full/10.1002/aur.3269
• ECHO Autism Challenging Behavior: https://echoautism.org/challenging-behavior/
• Autism Speaks Challenging Behavior Toolkit: https://www.autismspeaks.org/tool-kit/challenging-behaviors-tool-kit
• RUBI intervention online materials: https://academic.oup.com/book/1248/chapter/140180019
• Moseley article referenced during the talk: https://link.springer.com/content/pdf/10.1186/s13229-019-0267-3.pdf

Originally published December 3, 2024.

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. 

• The Prevalence of Gastrointestinal Problems in Children Across the United States With Autism Spectrum Disorders From Families With Multiple Affected Members (Wang et al., 2011)
• Gastrointestinal Symptoms in Autism Spectrum Disorder: A Meta-analysis (McElhanon, 2014)
• Gastrointestinal Symptoms in Children with an Autism Spectrum Disorder and Language Regression (Valicenti-McDermott et al., 2008)
• Characterization of Initial Gastrointestinal Evaluation of Children with Autism Spectrum Disorder: A Descriptive Study (Mostafavi et al., 2024)

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). 

• Evaluation of Gastroesophageal Reflux Disease in Children on the Autism Spectrum: A Study Evaluating the Tolerance and Utility of the BRAVO Wireless pH Monitoring (Rodriguez et al., 2022)

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). 

• Association of Autism Spectrum Disorders and Inflammatory Bowel Disease (Lee et al., 2018)

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). 

• The Co-Occurrence of Autism and Avoidant/Restrictive Food Intake Disorder (ARFID): A Prevalence-Based Meta-Analysis (Sader et al., 2024)
• Avoidant/restrictive food intake disorder and severe food selectivity in children and young people with autism: A scoping review (Bourne et al., 2021)

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). 

• Functional Gastrointestinal Disease in Autism Spectrum Disorder: A Retrospective Descriptive Study in a Clinical Sample (Penzol et al., 2019)
• Characterization of Initial Gastrointestinal Evaluation of Children with Autism Spectrum Disorder: A Descriptive Study (Mostafavi et al., 2024)

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). 

• Evaluation of Chronic Constipation in Children With Autism Spectrum Disorder (Coe et al., 2023)

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.

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