Autism and Trauma: Research Updates
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.
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 has conducted and published studies on broad array of topics including the role of paternal age in ASD risk, the co-occurrence of childhood psychopathologies, and differential predictors of CBT efficacy for child anxiety. Her present research focuses on the overlap, assessment and treatment of anxiety and autism spectrum disorders (ASD). Her ongoing projects aim to explore the varied presentation and phenomenology of anxiety in ASD and the implications of this variation for effective anxiety measurement and treatment.
Dr. Kerns is also preparing to extend this work to the understudied area of traumatic events and their sequelae in youth with ASD. Another area of interest is the use of technology to facilitate the dissemination of empirically based treatments. Dr. Kerns is currently working to develop cost-effective, computer-assisted CBTs for youth with ASD and anxiety, interactive social stories to improve skill generalization in ASD, and video-enhanced ASD screening and educational tools. Her long terms goals include developing a parsimonious model of psychiatric co-occurrence to inform the design and dissemination of cross-diagnostic assessments and treatments that will improve child wellbeing and development.
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
Resources
Meltdowns & Calming Techniques in Autism
Article on the difference between meltdowns and tantrums and possible calming techniques
Sexual Victimization in Autism
Multimedia article on the experience and prevalence of victimization and what we can do about it
Cited Studies
History has taught us that children with disabilities in general are at an increased risk of child maltreatment. The maltreatment may cause additional disabilities. Furthermore, child maltreatment as an adverse childhood experience has been linked to leading causes of adult morbidity and mortality. In this paper, the international disability prevalence is reviewed as well as the connection between disability and maltreatment. Stigma, discrimination and ignorance regarding disabilities are factors which place people with disabilities at higher risk for violence. Prevention and early detection are therefore important public health aspects in this regard.
Background: The relationship of health risk behavior and disease in adulthood to the breadth of exposure to childhood emotional, physical, or sexual abuse, and household dysfunction during childhood has not previously been described.
Methods: A questionnaire about adverse childhood experiences was mailed to 13,494 adults who had completed a standardized medical evaluation at a large HMO; 9,508 (70.5%) responded. Seven categories of adverse childhood experiences were studied: psychological, physical, or sexual abuse; violence against mother; or living with household members who were substance abusers, mentally ill or suicidal, or ever imprisoned. The number of categories of these adverse childhood experiences was then compared to measures of adult risk behavior, health status, and disease. Logistic regression was used to adjust for effects of demographic factors on the association between the cumulative number of categories of childhood exposures (range: 0–7) and risk factors for the leading causes of death in adult life.
Traumatic events such as abuse, bullying, and exposure to violence are commonplace among typically developing children and occur at least as often among those with autism spectrum disorder (ASD). Children with ASD are vulnerable to traumatization due to their deficits in social communication and emotion regulation. Research on posttraumatic symptoms among children with ASD is reviewed. Bullying has received much attention while there is a paucity of research on other types of trauma. Anxiety, social isolation, and developmental regression are associated with trauma. Further research is needed to clarify the symptom presentation and frequency of PTSD. Sensitive self-report measures are needed as well as validation of existing measures for assessing trauma in this population.
Individual differences are known to influence the risk of trauma exposure and development of posttraumatic stress disorder (PTSD). It has been suggested that features of autism spectrum disorder (ASD) may confer such risk. This article provides a systematic review of the assessment and treatment of PTSD in individuals with ASD, in addition to summarising the rates and presentation of PTSD within this population. Twenty-four studies met eligibility criteria. PTSD in children and adolescents was found to co-occur at a similar or greater rate compared to general population estimates, although current estimates come predominantly from treatment-seeking samples. Preliminary findings from case reports suggest traditional assessments and treatments for PTSD can be effective, although there is a shortage of well-controlled research.
Introduction: autism spectrum disorder (ASD) and intellectual disability (ID) seem to influence the risk of and vulnerability to exposure to trauma and adverse events. While assessment of a psychiatric disorder in ASD and ID generally is challenging, identification of post-traumatic stress disorder (PTSD) seems particularly so, and knowledge does not seem easily accessible. Methods: This article provides a systematic review of studies describing trauma reactions in individuals with both ASD and ID, including studies involving any single case with the combination of ASD, ID, and PTSD. To systematically explore PTSD symptom presentation in the group, all reported symptoms from studies were assigned by DSM-5 criteria. Results: Eighteen studies met the inclusion criteria, eight group studies and 10 case studies. Assessment methodology in studies varied, as did the format of symptom report. DSM-5 criteria provided a useful framework for integrating findings across studies, indicating that PTSD may be identified in individuals with ASD and ID. However, symptoms involving alterations in arousal and negative alterations in thought and behavior seem more easily identified than symptoms of reexperiencing and avoidance. Conclusions: There is an urgent need to identify behavioral equivalents to PTSD symptoms in this group, making it possible to identify warning signs of trauma and abuse even if such incidents are not known to family or professional carers.
Background
Children with developmental disabilities are at heightened risk for maltreatment. However, little is known regarding the prevalence of maltreatment among specific groups, such as autism spectrum disorder (ASD) and/or intellectual disability (ID). Information about maltreatment in these groups can aid in the development of supports and prevention strategies for vulnerable children and their families.
Methods
Using record linkage between the Department of Social Services (DSS) and the Autism and Developmental Disabilities Monitoring (ADDM) network, this study compares the prevalence and characteristics of maltreatment among children with ASD-only (n = 316), ASD and comorbid ID (ASD+ID; n = 291), ID-only (n = 1,280), and controls (n = 3,101). Behavioral correlates of maltreatment are examined.
Adverse childhood experiences (ACEs) are risk factors for mental and physical illness and more likely to occur for children with autism spectrum disorder (ASD). The present study aimed to clarify the contribution of poverty, intellectual disability and mental health conditions to this disparity. Data on child and family characteristics, mental health conditions and ACEs were analyzed in 67,067 youth from the 2011–2012 National Survey of Children’s Health. In an income-stratified sample, the association of ASD and ACEs was greater for lower income children and significantly diminished after controlling for child mental health conditions, but not intellectual disability. Findings suggest that the association of ACEs and ASD is moderated by family income and contingent on co-occurring mental health conditions.
Traumatic childhood events are associated with a wide range of negative physical, psychological and adaptive outcomes over the life course and are one of the few identifiable causes of psychiatric illness. Children with autism spectrum disorder (ASD) may be at increased risk for both encountering traumatic events and developing traumatic sequelae; however, this topic has been understudied. This review considers the rationale for examining traumatic events and related symptomology in individuals with ASD and summarizes the limited research on this topic. A conceptual framework for understanding the interplay of ASD, trauma and traumatic sequelae is proposed and recommendations for future research presented.
Aim
People with autism spectrum disorders (ASDs) experience disparities in health. An important but overlooked risk factor for health disparities in the ASD population is adverse childhood experiences (ACEs). The purpose of this study was to identify the prevalence of ACEs among families of children with and without ASD, using a population-based sample.
Method
Data from the 2011 to 2012 National Survey of Child Health were analyzed to estimate prevalence of ACEs among families of children with and without ASD, age 3 to 17 years (ASD=1611; estimated population=1 165 34). The child’s ASD status was obtained from parent report; ACEs were assessed with the modified Adverse Childhood Experiences Scale. Bivariate and multinomial logistic regression analyses were utilized to investigate the relationship between ACEs and childhood ASD status.
Objective
It has been suggested that the sequelae of trauma are under-recognized in youth on the autism spectrum. We aimed to generate expert consensus regarding important trauma indicators, including but not limited to traumatic stress symptoms, in autistic youth.
Methods
We recruited 72 experts in autism and/or childhood trauma. Via a 2-round Delphi survey, experts commented on and rated the importance of 48 potential indicators, drawn from PTSD criteria and a broader literature on traumatic sequelae in autism. A revised list of 51 indicators, 18 clinical guidelines developed from expert comments, and summaries of expert qualifications and ratings from Round 1 were submitted to a second round (n = 66; 92% retention) of expert review and rating.
Background: Autistic adults experience high rates of traumatic events and posttraumatic stress disorder (PTSD) symptoms. However, less is known about how autistic adults experience (i.e., by directly experiencing, witnessing, and/or learning about) distinct types of traumatic events (e.g., social, nonsocial traumas). Little research has considered whether the four-factor structure of PTSD symptom domains (e.g., avoidance, intrusions, hypervigilance, negative mood/cognition) can be applied for autistic adults. Lastly, understanding how demographic factors (e.g., gender, race/ethnicity) relate to rates of traumatic events and symptoms among autistic adults is critical for understanding disparities relating to PTSD. Therefore, the current study aims to examine self-reported traumatic events and PTSD symptoms, and identify associations with demographic factors, among autistic adults.
Methods: Participants included 276 autistic adults and a nationally representative sample of 361 nonautistic adults who completed online measures, including the Life Events Checklist for DSM-5, Posttraumatic Stress Disorder Checklist for DSM-5 (PCL-5), Autism-Spectrum Quotient-Short, and Patient Health Questionnaire-4. Analyses focused on evaluating group differences in traumatic events and symptoms and considered associations with demographic factors.
Background
Co-occurring mental health or psychiatric conditions are common in autism, impairing quality of life. Reported prevalences of co-occurring mental health or psychiatric conditions in people with autism range widely. Improved prevalence estimates and identification of moderators are needed to enhance recognition and care, and to guide future research.
Methods
In this systematic review and meta-analysis, we searched MEDLINE, Embase, PsycINFO, Scopus, Web of Science, and grey literature for publications between Jan 1, 1993, and Feb 1, 2019, in English or French, that reported original research using an observational design on the prevalence of co-occurring mental health conditions in people with autism and reported confirmed clinical diagnoses of the co-occurring conditions and autism using DSM or ICD criteria. For co-occurring mental health conditions reported with at least 15 datapoints (studies), we assessed risk of bias and we determined pooled estimates of prevalence for different co-occurring conditions in autism using random-effects models, and descriptively compared these with prevalence estimates for the general population from the literature (post hoc). We investigated heterogeneity in prevalence estimates using random-effects meta-regression models. This systematic review is registered with PROSPERO, CRD42018103176.
Context Traumatic events are common and are related to psychiatric impairment in childhood. Little is known about the risk for posttraumatic stress disorder (PTSD) across different types of trauma exposure in children.
Objective To examine the developmental epidemiology of potential trauma and posttraumatic stress (PTS) in a longitudinal community sample of children.
Methods A representative population sample of 1420 children aged 9, 11, and 13 years at intake were followed up annually through 16 years of age.
Background
It is unclear how many children and adolescents develop post-traumatic stress disorder (PTSD) after trauma.
Aims
To determine the incidence of PTSD in trauma-exposed children and adolescents as assessed with well-established diagnostic interviews and to examine potential moderators of the estimate.
Method
A systematic literature search identified 72 peer-reviewed articles on 43 independent samples (n = 3563). Samples consisting only of participants seeking or receiving mental health treatment were excluded. Main analyses involved pooled incidence estimates and meta-analyses of variance.
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