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.

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

Patricia Wright, PhD, MPH, and Katie Curran, MAAP, introduce Proof Positive – The Autism Well-being Alliance. The speakers describe positive psychology, its impact on well-being, and why it matters for autistic people and their communities. Curran details four skills to help with thinking positively and provides suggestions for practicing and applying them to daily life. The speakers emphasize the lack of focus on positive emotions in autism care and how this plays into isolation and mental health issues. They affirm that individuals “can control [their] own well-being” by employing positive psychology and training their minds to build on the things that go well each day. Wright and Curran outline Proof Positive’s free learning and teaching resources before the Q&A. 

Handouts are online HERE

In this webinar:

1:00 – Proof Positive and the need for positive psychology
5:00 – What is positive psychology
14:00 – PERMA + Snapshot for well-being
18:30 – What Went Well?
27:45 – Jolts of Joy
30:43 – Broaden and Build vs. Fight or Flight
39:44 – Showcase the Good
48:20 – Q &A

Background

Patricia Wright, PhD, MPH, Executive Director at Proof Positive, introduces The Autism Well-Being Alliance, a nonprofit dedicated to improving the well-being of autistic people and their families, providers, and communities. By intersecting positive psychology with autism services, Proof Positive spreads the science and skills of happiness (1:00). She notes high rates of underemployment and mental health issues in autistic adults and underscores how difficult it is to find and retain social service providers. Over the last decade, the demand for these roles has increased 41%, and the U.S. healthcare system is experiencing major staff shortages. Although well-being is a relatively new term within autism care vocabulary, Wright underscores its importance and potential for quality of life management (3:00). 

Why Positive Psychology

Katie Curran, MAPP, Chief Well-being Officer at Proof Positive, says that those who practice positive psychology experience increased well-being and life satisfaction, better sleep, stronger relationships, less depression, and more success in school and work (5:00). Positive psychology considers the components of a life full of purpose and what makes life worth living. In other words, Curran continues, it asks, “Who are you at your best, and how do we get more of it?” Over thirty years of research, six elements critical to human thriving have arisen (8:10): 

1. Positive emotions – A sense of inspiration; a wide variety of positive emotions felt most days
2. Engagement – A good sense of what interests you; ability to spend time in flow and follow interests
3. Relationships – Other people matter, and relationships are critical to who we are and how we navigate the good and bad times
4. Mattering – A sense that your life has meaning and purpose; a feeling of connection to something larger than yourself. 
5. Accomplishment – Having a healthy sense of where you are going in the future; you have goals you are pursuing, and you believe you can achieve them
6. Physical health – Sleep, nutrition, and movement are key to maintaining happiness; when we move, our muscles pump food to the brain.

These six aspects of human thriving, referred to as PERMA+, are critical to understanding and empowering people to impact their well-being. 

To explore the research behind these elements, visit Proof Positive’s Science Page. 

Skills for well-being support

Curran asserts that “You can control your well-being” and outlines four practical tools that enhance well-being skills. 

#1 – PERMA+ Snapshot

The PERMA+ Snapshot asks you to stop and reflect on your well-being around once a week (14:00). Proof Positive offers a well-being survey that helps measure well-being and provides suggestions about skills to practice. The speaker emphasizes that no matter where you are on the scales, you are improving your well-being simply by taking time to take this survey because you are telling yourself that you are important and worth spending time and energy on (17:30). She suggests referring back to the PERMA+ survey for snapshots and tracking personal well-being.

#2 – What Went Well?

The goal of this exercise is to train your brain to mindfully notice, remember, and track the good things that happen each day (18:30). The presenter notes that left on their own, our brains default to spotting danger and things that have gone wrong as a means of self-preservation and protection. However, we need to shift our focus and ensure that every day, we intentionally focus on things that have gone well. 

To practice What Went Well, Curran suggests using a journal or gratitude app on your device and setting a time to write down at least three things that went well each day. It’s also helpful to consider what made each good thing special and to share your list with a family member or friend (22:55). The presenter notes that people who do this exercise before bed fall asleep faster and sleep longer but also that anxiety tends to be worse first thing in the morning. Therefore, she continues, it can be good to capture What Went Well before bed and then read the list in the morning (23:40). The speaker provides a few more tips and free teaching resources from the Proof Positive Website. 

#3 – Jolts of Joy

The Jolts of Joy exercise teaches us to intentionally experience higher levels of well-being and bursts of positive emotions across the day (27:45). Curran describes the negativity bias, noting that across 130 languages, six of the seven shared words to describe emotions are negative – again due to survival because fear keeps us alive (30:45). Barbara Frederickson was the first researcher to ask what good our positive emotions are and why we feel hope. She discovered that where negative emotions trigger a fight or flight response, positive emotions trigger the broaden and build response. “Broaden and Build’ refers to how our minds open up for creativity and problem-solving when we feel good. The presenter explains it as the opposite of tunnel vision (related to stress), where our vision expands and we see more of the world around us. Because growth is a critical part of the human experience, positive emotions are just as essential to survival as negative ones (31:50). 

Practicing jolts of joy can be a solitary or group activity. Carrun suggests listing 10 ways you experience positive emotions, be it cat videos, family photo albums, music, etc. It is good to include a variety of positive emotions in the list. Place your list where it’s easy to see, and then be sure to engage in a minimum of three (3) Jolts of Joy every day (35:45). The presenter underscores the importance of positive emotions, noting that many emotion regulation programs do not include these in the curriculum (39:00). 

#4 – Showcase the Good

Responding to other people’s good news in a way that enhances their joy and enables them to relive the positive experience is a critical differentiator between thriving relationships (39:45). Shelley Gable’s research shows that there are four ways people tend to respond to good news and that three of the styles are detrimental to relationships where only one boosts them. The four response styles are outlined below using the example of responding to a child who got a 90% on their math test (39:45):

1. Passive – Quiet, understated support.
   1. “Hey, look! I got a 90% on my math test!”
   2. “Great Job.”
2. Passive Destructive – You ignore the information altogether or “change the channel.”
   1. “Hey, look! I got a 90% on my math test!”
   2. “Do you have your cleats? It’s almost time for soccer.” or “Oh, where is your sister? She got a 100% on her history test.”
3. Active Destructive – Someone brings good news, and you squish it – a literal joy killer.
   1. “Hey, look! I got a 90% on my math test!”
   2. “A 90%? I thought we studied so hard! What did you get wrong?”
4. Active Constructive – Authentically engaged and asking questions
   1. “Hey, look! I got a 90% on my math test!”
   2. “Wow! Great job! We studied so hard for that! What did your teacher say? How do you feel?”

Curran highlights that when we Showcase the Good, both parties experience increases in trust, belonging, and intimacy. How we celebrate the good together is at the center of positive relationships. To practice Showcasing the Good, the speaker suggests sharing good news, leaning in when someone else shares their good news, asking questions to help that person relive their experience, and utilizing your own strengths to show interest (what are you curious about? Let that guide your questions and observations) (46:00). 

Proof Positive provides free learning and teaching resources for parents, school teachers, and professionals to help intersect positive psychology with autism care strategies. Each skill has an associated resource bundle that you can use to boost positive thinking and well-being. Curran and Wright thank the attendees before opening the Q&A (48:20). 

Originally posted September 24, 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