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

Dr. Connor Kerns discusses research on the prevalence, sources, and impact of traumatic experiences in autistic people. She underscores the prevalence of childhood adversity in autistic groups and highlights the need for more research in this area. The presenter details recent investigations on the drivers and indicators of trauma reactions in autistic children and young adults. Results show autism-specific sources and representations of trauma that can inform assessment and care development. Kerns touches on the Childhood Adversity and Social Stress Questionnaire (CASSQ) and other ongoing research before the Q&A.

You can take the knowledge quiz HERE

In this webinar: 

1:20 – Disclosures and land acknowledgments
2:00 – Trauma and autism
7:30 – Community providers and trauma care
9:10 – Childhood adversity
13:10 – Adversity and trauma
17:40 – Study 1: Sources of trauma
21:15 – Chronic stressors
25:24 – Results
33:05 – Study 2: Trauma indicators
38:50 – Results
44:50 – Conclusions and future directions
50:40 – Q&A

Trauma and autism

Kerns discusses the lack of attention given to trauma-related conditions in autism and considers whether current assessment tools accurately capture experiences of adversity, trauma, and anxiety in autistic people (2:00). She cites a recent study where one-third of participants reported histories of abuse, but only two percent had received a diagnosis for post-traumatic stress disorder (PTSD) (5:40). The speaker emphasizes understanding the sources and signs of trauma in autism as a critical avenue of ongoing research (4:30). 

For example, a recent survey of community care providers found that 54% of respondents report treating, 56% report screening, and 74% report inquiring about trauma-related symptoms in autistic individuals (7:30). Kerns asserts that these findings provide hope because although research has been slow to make this connection, experienced community providers can advise on investigation and assessment development (8:45). 

• Behavioral Symptoms of Reported Abuse in Children and Adolescents with Autism Spectrum Disorder in Inpatient Settings (Brenner et al., 2018)
• Traumatic Childhood Events and Autism Spectrum Disorder (Kerns et al., 2015)
• Increased risk of acute stress disorder and post-traumatic stress disorder in children and adolescents with autism spectrum disorder: a nation-wide cohort study in Taiwan (Li et al., 2024)
• Experience of Trauma and PTSD Symptoms in Autistic Adults: Risk of PTSD Development Following DSM-5 and Non-DSM-5 Traumatic Life Events (Rumball et al., 2020)
• Service use by youth with autism within a system-driven implementation of evidence-based practices in children’s mental health services (Stadnick et al., 2020)
• Screening and treatment of trauma-related symptoms in youth with autism spectrum disorder among community providers in the United States (Kerns et al., 2020)

Childhood adversity

Childhood adversity is a significant risk factor for mental and physical health in the general population. Kerns cites a population-based U.S. study showing that parents of children with autism report more adversity, where 28% report two or more adversities compared to 18% in the general population (9:10). Research also shows increased instances of maltreatment (emotional, physical, and sexual abuse) for autistic children and that risk of adversity exposure is inflated for those living at or around poverty level (10:15). The presenter questions why levels of PTSD are so low in the autistic population and why researchers are not paying more attention to this topic (10:50). 

• Brief Report: Examining the Association of Autism and Adverse Childhood Experiences in the National Survey of Children’s Health: The Important Role of Income and Co-occurring Mental Health Conditions (Kerns et al., 2017)
• Adverse childhood experiences in children with autism spectrum disorder (Hoover & Kaufman, 2018)
• Child maltreatment in autism spectrum disorder and intellectual disability: results from a population-based sample (McDonnell et al., 2019)
• A population-based examination of maltreatment referrals and substantiation for children with autism spectrum disorder (Fisher et al., 2019)

Adversity and trauma

The speaker outlines DSM-5 trauma parameters (e.g., exposure to death, threatened serious injury, or sexual violence…) and highlights the exclusivity of this description. She asserts the need for a broader definition of trauma as any experience or event that negatively impacts an individual for an extended period (13:10). Kerns explains that while many adversities and stressors qualify for the DSM-5 description, we must keep in mind the broad range of mental health outcomes associated with trauma (e.g., PTSD, depression, anxiety) (14:00). She highlights that both chronic low magnitude and extreme stressors can cause PTSD symptoms, meaning trauma responses can be based on a single event or long-term exposure to specific adversities (15:40). 

• Rates of post-traumatic stress disorder in trauma-exposed children and adolescents: meta-analysis (Alisic et al., 2014)
• Traumatic Events and Posttraumatic Stress in Childhood (Copeland et al., 2007)
• Childhood life events and childhood trauma in adult patients with depressive, anxiety and comorbid disorders vs. controls (Hoven et al., 2010)
• Posttraumatic Stress Without Trauma in Children (Copeland et al., 2010)

Current research

Kerns’s ongoing research focuses on strengthening our ability to recognize, characterize, prevent, and treat adverse consequences of trauma in autistic individuals. We must begin, she asserts, by better understanding how individuals with autism experience and cope with trauma. Only then can we develop tools and guidelines for accurately assessing these difficulties (16:30). 

Study 1: Sources of trauma

The presenter outlines methods for a recent study that used semi-structured interviews to discuss trauma experiences (broader definition) with 14 autistic adults and 15 caregivers (17:40). She provides participant details, highlighting that only three were diagnosed with PTSD, while 100% reported trauma (19:40). Trauma history questionnaires found the most common adversities faced were the death of a loved one, emotional abuse, physical abuse, bullying, and “other” (21:15). Qualitative interviews illustrated three other main points of trauma (23:00). Kerns describes each and provides participant quotes:

• Feeling trapped due to emotional or physical restraints in therapeutic environments or school, the loss of autonomy in decision-making, and loss of opportunity and self-determination (25:24). 

“This need of wanting to be successful and make his mark on society, it’s such a basic need, and there doesn’t seem to be any kind of support.” – Mother of a 22-year-old son

• Social exclusion resulting from bullying, social isolation, alienation, stigma, discrimination, and betrayal by individuals in their lives (26:25).

“I felt like everywhere I went, I was just treated like I was a space alien, yet nobody had a reason why; there was no explanation.” – 39-year-old woman

• Traumatic incongruities that stem from experiences in inhospitable environments, including sensory experiences, overwhelming transitions/changes, and the chronic stress of needing to predict and decipher social situations (27:40). 

“I don’t know how I pieced it together! But the leaves were falling off the trees, and it was disruptive to him! His whole life was disrupted at the age of four by leaves falling off of the trees.” – Mother of a 22-year-old son

The presenter summarizes study findings, highlighting that both traditional and more broadly defined instances of trauma impact autistic youth. She underscores chronic forms of trauma for people with autism, including social exclusion and marginalization. Some life events, like transitions, haircuts, or social interactions, can also impact health and well-being. Kerns reiterates that much more research is needed to understand whether these experiences lead to PTSD or other related health concerns (29:25). She notes study limitations and a recent publication on how people cope with the long-term effects of trauma (31:00). 

• Exploring potential sources of childhood trauma: A qualitative study with autistic adults and caregivers (Kerns et al., 2022)
• Heightened risk of posttraumatic stress disorder in adults with autism spectrum disorder: The role of cumulative trauma and memory deficits (Rumball et al., 2021)
• Autism Spectrum Disorder and Post-Traumatic Stress Disorder: An unexplored co-occurrence of conditions (Haruvi-Lamden et al., 2020)
• A Qualitative Study of Self and Caregiver Perspectives on How Autistic Individuals Cope With Trauma (Ng-Cordell et al., 2022)

Study 2: Trauma indicators

The goal of this study was to develop expert consensus on essential indicators of traumatic reactions in autistic children and subsequently inform assessment guidelines. The study sample included clinicians and clinical researchers with more than five years of experience who have helped at least one autistic child with traumatic event exposure (33:05). 72% of experts in the study regularly work with minimally verbal youth; 78% had seen more than ten autistic youth with a trauma history, and 35% had seen more than 50 (36:33). Researchers administered a Delphi survey that uses multiple iterations of questionnaires and controlled feedback to build consensus (75% or more agree) (36:55). Survey indicators included DSM-5 and more broadly defined trauma behaviors (38:12). 

Many trauma indicators endorsed by participants did fit into the general PTSD definitions. All intrusion symptoms were generally endorsed, aside from nightmares. All avoidance and arousal/reactivity indicators were endorsed. Kerns explains that negative alterations in cognition and mood were not endorsed as many experts feel these changes are too complex to address in autistic patients (38:50). Six other important indicative behaviors not listed in the DSM-5 were found (40:42): 

• Regression of adaptive skills
• Suicidality
• Self-injurious behavior
• Non-suicidal self-injury
• Excessive reassurance seeking
• Reduced communicative language

Experts also reached consenus around key diagnostic issues, including the need for caregiver reports, autism-specific tools, cross-discipline evaluations and work, the importance of developmental profiles in assessing trauma, and how social-communication differences in autism can make it challenging to assess trauma and overall health (41:15). The speaker reiterates that many (not all) DSM-5 criteria are relevant to autism, along with six other indicators identified by experts. These findings, she asserts, can help guide the development of autism-specific measures to improve assessment and diagnosis (42:30). 

• Expert consensus regarding indicators of a traumatic reaction in autistic youth: a Delphi survey (Kerns et al., 2022)

Conclusions and future directions

She reviews the growing evidence that autistic individuals experience above-average rates of childhood adversity, which is significantly associated with adverse mental and physical health across the lifetime. She reminds viewers that community providers endorse the relevance of this issue and urges researchers and practitioners to consider a broader range of potentially traumatic stressors and symptoms when working with autistic youth (44:50). 

Childhood Adversity and Social Stress Questionnaire (CASSQ)

Kerns and her team are currently developing an autism-tailored measure of adversity and traumatic reactions for children and young adults with autism (45:50). She explains how the studies outlined in this presentation laid the foundation for the Childhood Adversity and Social Stress Questionnaire (CASSQ), which is currently being piloted for validity. She notes CASSQ subscales and describes the process of direct feedback from autistic participants about the readability of the questionnaires (47:05). Kerns asserts that future avenues of research should also assess memory and how it affects cognitive ability. She notes an ongoing study on the relationship between social processing and the experience of anxiety in autism before the Q&A (50:40). 

You can find more information and sign up for the ongoing study discussed HERE.

Originally published June 4, 2024

The use of punishment to treat severe behavioral challenges in autistic children was first introduced nearly 60 years ago. Although most people in the autism community strongly disagree with using any form of punishment as a therapeutic approach, aversives continue to be a source of discussion and controversy. Recently, the Association for Behavior Analysis International, a renowned professional organization established in 1974, asked its members to vote on whether contingent electric shock should be entirely ruled out or be appropriate in some cases. Given the recent renewed interest in aversives, I thought it would be timely to share my thoughts on this topic.

Over the past 50+ years, much has been written about using aversive interventions to treat those on the autism spectrum. Aversives involve mild to severe degrees of discomfort or pain, from saying the word “no” or making a loud noise to more extreme forms such as forced ammonia inhalation, blindfolding, and electric shock [1-3].

Although aversives can be moderately effective in reducing challenging behaviors, such as self-injurious behavior (SIB) and aggression toward others, critics often use the words “cruel” and “torture” to describe extreme forms of aversives. However, some forms of aversives are currently accepted by the general professional community. For instance, aversives, including contingent electric shock (CES), are sometimes employed to treat addictions in the general population, including alcoholism, gambling, and smoking [4-6].

In this editorial, I will address CES given a legal decision rendered last year (July 2021) [7]. Basically, a judge allowed the utilization of CES for clients who engaged in severe challenging behaviors potentially leading to harm to others or to themselves. This ruling applies only to clients at the Judge Rotenberg Educational Center in Canton, Massachusetts. The ruling affects about one-fifth of the approximately 300 clients at the center. However, this decision can now be referred to in other legal cases involving similar situations.

CES should not be confused with electroconvulsive therapy (ECT). The former is applied immediately, usually within seconds, after a challenging behavior, such as self-harming behavior or aggression. The latter, ECT, involves administering electric current into the brain to induce a brief seizure. ECT has been given to some individuals on the spectrum to treat severe self-injurious behavior [8] and catatonia [9].

Research on CES started in the mid-1960s, soon after autism was recognized as a biological condition as opposed to a condition caused by emotional neglect by parents. Early studies typically involved single-subject controlled experiments. Over the years, few studies have been reported in the literature.

Today, CES is, for the most part, not considered a viable form of intervention within the autism community. In addition, the Food and Drug Administration banned CES in the United States [10], and the United Nations has stated that CES is dehumanizing and abusive [11].

The use of CES over the decades was never widespread; however, it was sometimes employed as a last resort since SIB can lead to severe self-inflicted harm, such as lacerations, bone fractures, and concussions. There are also reports of individuals blinding themselves in addition to biting off their fingers or part of their tongue. One rationale people have used when condoning CES is to avoid other “less desirable” options, including long-term sedation or restraint.

Several methods have been used to deliver CES, including (1) an electrical prod, (2) an electrical grid embedded in the floor, (3) a remote-controlled device activated by a therapist, and (4) an automated movement sensor. Regarding the latter, the Self-Injurious Behavior Inhibiting System (SIBIS) was created to control head-banging by placing a sensor on the child’s head that would deliver a signal to activate a shock to the arm or leg [12].

How should we approach the treatment of severe challenging behaviors?

Edward Carr, one of the leading experts in treating challenging behaviors, would often tell a heart-wrenching story about the time he attempted to treat a young man on the spectrum who engaged in severe SIB [13]. Dr. Carr’s team developed a behavioral strategy that involved giving CES immediately after the man engaged in head-hitting. The intervention was moderately successful in that the frequency of head-hitting decreased but was not entirely eliminated. Later, the team learned that the man suffered from migraine headaches. One could imagine how an individual would feel when experiencing both a severe head pain and electric shock.

In a recent interview in the Boston Globe, a father described his son who had blinded himself in one eye and exhibited numerous challenging behaviors (August 1, 2021) [14]. After receiving CES, he stopped poking his other eye. Other benefits seen in the child were also attributed to the CES, including improvements in communication and self-help skills.

However, it is important to mention that one research study demonstrated a dramatic reduction in eye-poking behavior in a group of autistic children after receiving liquid calcium [15]. This is because some-to-many individuals who exhibit this type of behavior suffer from hypocalcemia. One possible explanation for eye-poking is that low calcium levels are associated with dry eye syndrome, which may lead to inflammation on the surface of the eyes and/or the eyelids as well as cause a burning sensation [16, 17]. Thus, giving an individual a simple nutritional supplement may be beneficial when treating behavior directed toward the eyes. Unfortunately, this treatment is not well-known among clinicians.

The use of CES, as almost always argued, is considered after attempting all other possible options for intervention. Although this may sound convincing and commendable, the term “all” can be considered a misnomer because this really depends on the knowledge-base as well as the training of the members of the clinical team as well as outside consultants. Given the limited amount of research and the lack of widespread knowledge about the biology of challenging behaviors, one can easily question whether the decision to administer electric shock is truly reasonable and thorough.

There is mounting evidence indicating that internal discomfort or pain may be associated with SIB. Unfortunately, many individuals on the autism spectrum have impaired communication skills. As a result, they often cannot express their feelings of discomfort and pain. Comorbidities associated with SIB include gastrointestinal problems [18], immune system issues [19], metabolic problems [20], seizures [21], abnormal sensory processing [22], nutritional issues [23], anxiety [24], and sleep problems [25].

Obviously, it can be a daunting task to assess all possibilities when determining the underlying reasons for a severe behavior, but it is crucial that an all-out effort be made.

The Autism Research Institute recently launched a new webpage, www.Self-InjuriousBehavior.com, designed to assist professionals and parents in identifying treatments that may reduce or eliminate self-injurious behavior. After answering questions regarding the location of the injury as well as related factors, users are directed to a description of possible underlying causes for the behavior. In addition, online links are presented with respect to understanding and treating the behavior.

A large parent survey that collected data on almost 40,000 individuals with ASD indicated that 9% engaged in SIB, 19% engaged in aggression, and 19% engaged in both behaviors (data collected by the Autism Research Institute between 1964 and 2006). Given that nearly half of individuals on the spectrum exhibit one or both of these challenging behaviors, we urge the autism community to work collaboratively to establish a consensus report on treating challenging behaviors. The goal of such an effort would be to recommend a number of behavioral, sensory, medical, and biomedical approaches that could help to identify the underlying reasons for the behaviors of interest, pointing to the most appropriate treatments. We hope that the autism community will welcome such a challenge and support such an endeavor.

References are available at www.ARRIReferences.org.

This editorial originally appeared in Autism Research Review International, Vol. 36, No. 4, 2022