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

In this webinar:

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

Childhood adversity and trauma

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

• Prevalence of adverse childhood experiences among individuals aged 45 to 85 years: a cross-sectional analysis of the Canadian Longitudinal Study on Aging (Joshi et al., 2021)
• Disability and maltreatment (Merrick et al., 2018)

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

• Relationship of Childhood Abuse and Household Dysfunction to Many of the Leading Causes of Death in Adults: The Adverse Childhood Experiences (ACE) Study (Felitti et al., 1998)
• 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)
• Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis (Lai et al., 2019)
• Examining Rates of Traumatic Events and Posttraumatic Stress Disorder Symptoms Among Autistic Adults (Andrzejewski et al., 2024)
• Autism Spectrum Disorder and Post-Traumatic Stress Disorder: An unexplored co-occurrence of conditions (Haruvi-Lamden et al., 2020)
• 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)

Complexities of assessing PTSD in autism

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

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

Intersection of autism and trauma

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

 Criterion/adversity events: 

• Disparities in adversity among children with autism spectrum disorder: a population-based study (Berg et al., 2016)
• Traumatic Childhood Events and Autism Spectrum Disorder (Kerns et al., 2015). 
• 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)

Traumatic event experiences:

• 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)
• A Systematic Review of Polyvictimization among Children with Attention Deficit Hyperactivity or Autism Spectrum Disorder (Hellström, 2019)
• Exploring potential sources of childhood trauma: A qualitative study with autistic adults and caregivers (Kerns et al., 2022)
• A Systematic Review of the Assessment and Treatment of Posttraumatic Stress Disorder in Individuals with Autism Spectrum Disorders (Rumball et al., 2019)

Traumatic stress outcomes:

• Identification of Post-Traumatic Stress Disorder in Individuals with Autism Spectrum Disorder and Intellectual Disability: A Systematic Review (Kidahl et al., 2019)
• Anxiety and Trauma-Related Disorders in Children on the Autism Spectrum (Ng-Cordell et al., 2022)
• A Systematic Review of the Assessment and Treatment of Posttraumatic Stress Disorder in Individuals with Autism Spectrum Disorders (Rumball et al., 2019)
• The Effects of Psychological Trauma on Children with Autism Spectrum Disorders: a Research Review (Mehtar & Mukkages, 2011)

Childhood Adversity & Social Stress Questionnaire (CASS-Q)

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

Preliminary results

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

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

Conclusion

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

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.

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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