Autism and Trauma
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.
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).
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.
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
Resources
The Social Information Processing & Mental Health in Autism (SIMH-A) Study
Enrollment for study on social processing and mental health
Sexual Victimization in Autism
Multimedia article on the experience and prevalence of victimization in autistic youth and adults and what we can do about it
Cited Studies
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.
Children and adolescents with autism spectrum disorder (ASD) may be particularly vulnerable to the impact of traumatic events, yet the association between ASD and the risk of developing acute stress disorder and post-traumatic stress disorder (PTSD) remains uncertain. This study aims to investigate this association, addressing the gap in large-scale evidence on the subject.
Research to date suggests that individuals with autistic spectrum disorder (ASD) may be at increased risk of developing post-traumatic stress disorder (PTSD) following exposure to traumatic life events. It has been posited that characteristics of ASD may affect perceptions of trauma, with a wider range of life events acting as possible catalysts for PTSD development. This study set out to explore the nature of “trauma” for adults with ASD and the rates of self-reported PTSD symptomatology following DSM-5 and non-DSM-5 traumas—the latter being defined as those that would not meet the standard DSM-5 PTSD trauma Criterion A. Fifty-nine adults with ASD who reported exposure to traumatic events took part in the study, which involved completing a series of online questionnaires. Thirty-three individuals reported experiencing a “DSM-5” traumatic event (i.e., an event meeting DSM-5 PTSD Criterion A) and 35 reported a “non-DSM-5” traumautic event. Trauma-exposed ASD adults were found to be at increased risk of PTSD development, compared to previous general population statistics, with PTSD symptom scores crossing thresholds suggestive of probable PTSD diagnosis for more than 40% of ASD individuals following DSM-5 or non-DSM-5 traumas. A broader range of life events appear to be experienced as traumatic and may act as a catalyst for PTSD development in adults with ASD. Assessment of trauma and PTSD symptomatology should consider possible non-DSM-5 traumas in this population, and PTSD diagnosis and treatment should not be withheld simply due to the atypicality of the experienced traumatic event.
Public mental health systems play an important role in caring for youth with autism spectrum disorder. Like other dually diagnosed populations, youth with autism spectrum disorder may receive services in the context of evidence-based practice implementation efforts within public mental health systems. Little is known about service use patterns within the context of system-driven implementations efforts for this population. This case–control study examined mental health service patterns of 2537 youth with autism spectrum disorder compared to 2537 matched peers receiving care in the Los Angeles County Department of Mental Health, the largest public mental health department in the United States, within the context of a system-driven implementation of multiple evidence-based practices. Although not the primary target of this implementation effort, youth with autism spectrum disorder were served when they met criteria for the services based on their presenting mental health symptoms. Comparative analyses using administrative claims data were conducted to examine differences in mental health utilization patterns and clinical characteristics. Findings revealed significant differences in the volume and duration of mental health services as well as differences in the service type and evidence-based practice delivered between youth with and without autism spectrum disorder. Results provide direction targeting implementation efforts for youth with autism spectrum disorder within a public mental health system care reform.
Using a cross-sectional survey of 673 multidisciplinary autism spectrum disorder providers recruited from five different sites in the United States, we examined the frequency with which community-based providers inquire about, screen, and treat trauma-related symptoms in their patients/students and assessed their perceptions regarding the need for and barriers to providing these services. Univariate and bivariate frequencies of self-reported trauma service provision, training needs, and barriers were estimated. Multivariable logistic regressions identified provider and patient-related factors associated with trauma-related symptoms screening and treatment. Over 50% of providers reported some screening and treatment of trauma-related symptoms in youth with autism spectrum disorder. Over 70% informally inquired about trauma-related symptoms; only 10% universally screened. Screening and treatment varied by provider discipline, setting, amount of interaction, and years of experience with autism spectrum disorder, as well as by patient/student sex, ethnicity, and socioeconomic status. Most providers agreed that trauma screening is a needed service impeded by inadequate provider training in trauma identification and treatment. The findings indicate that community providers in the United States of varied disciplines are assessing and treating trauma-related symptoms in youth with autism spectrum disorder, and that evidence-based approaches are needed to inform and maximize these efforts.
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.
Recent years have shown an uptick in studies assessing bullying and other adverse childhood experiences (ACEs) in children with autism spectrum disorder (ASD). This article reviews extant findings, and points to gaps in the literature. As bullying and other adverse experiences are common and associated with deleterious outcomes in children with ASD, there is a need for additional research on intervention strategies to prevent and mitigate the impact of these experiences. Ongoing work on the assessment of trauma experiences and PTSD symptoms in children on the spectrum is also needed.
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.
Children with disabilities experience elevated rates of maltreatment, but little is known about the interaction of children with autism spectrum disorder with child protection systems. A population-based dataset of 24,306 children born in 2008 in Tennessee, which included 387 children with autism spectrum disorder identified through the Autism and Developmental Disabilities Monitoring network, was linked with state child protection records. Rates of maltreatment referrals, screening for further action, and substantiated maltreatment were examined for children with versus without autism spectrum disorder. Significantly more children with autism spectrum disorder (17.3%) than without (7.4%) were referred to the Child Abuse Hotline. Children with autism spectrum disorder were less likely than children without autism spectrum disorder to have referrals screened in for further action (62% vs 91.6%, respectively), but substantiated maltreatment rates were similar across groups (3.9% vs 3.4%, respectively). Girls versus boys with autism spectrum disorder were more likely to have substantiated maltreatment (13.6% vs 1.9%, respectively). The high percentage of children with autism spectrum disorder referred for allegations of maltreatment, the differential pattern of screening referrals in for further action, and the high levels of substantiated maltreatment of girls with autism spectrum disorder highlights the need for enhanced training and knowledge of the complex issues faced by children with autism spectrum disorder, their families, and state welfare agencies.
It is unclear how many children and adolescents develop post-traumatic stress disorder (PTSD) after trauma.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.
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.
Main Outcome Measure Traumatic events and PTS were assessed from child and parent reports annually to 16 years of age. Risk factors and DSM-IV disorders were also assessed.
To investigate the association between childhood life events, childhood trauma and the presence of anxiety, depressive or comorbid anxiety and depressive disorders in adulthood. Data are from 1931 adult participants in the Netherlands Study of Depression and Anxiety (NESDA). Childhood life events included divorce of parents, early parental loss and ‘placed in care’, whereas childhood trauma was assessed as experienced emotional neglect, psychological, physical and sexual abuse prior to age 16.
It remains unclear to what degree children show signs of posttraumatic stress disorder (PTSD) after experiencing low-magnitude stressors, or stressors milder than those required for the DSM-IV extreme stressor criterion. A representative community sample of 1,420 children, ages 9, 11, and 13 at intake, was followed annually through age 16. Low-magnitude and extreme stressors as well as subsequent posttraumatic stress symptoms were assessed with the Child and Adolescent Psychiatric Assessment. Two measures of posttraumatic stress symptoms were used: having painful recall, hyperarousal, and avoidance symptoms (subclinical PTSD) and having painful recall only.
The stressors autistic individuals encounter and experience as traumatic may vary from those not on the spectrum and typically measured. We conducted in-depth interviews with autistic adults and caregivers of children and adults on the spectrum to identify potential sources of trauma for autistic individuals and evaluate the ability of a standard trauma measure to capture those experiences. Fourteen autistic adults and 15 caregivers with varied backgrounds, clinical profiles, and histories of adversity were interviewed. Participants also completed standard measures of autism, traumatic exposures, and stress. Interviews were analyzed to record both traditional sources of trauma, for comparison with the standard measure, and distinct sources, described as traumatic only in the narratives of participants. Participants described varied experiences as traumatic. Whereas some reflected traditional traumas (e.g. maltreatment) and forms of social marginalization, others reflected conflicts between autistic characteristics and the environment (e.g. sensory trauma). All adults and most caregivers described sources of trauma in interviews not reported on the standard measure. Results have implications for assessing traumatic events in autism and for understanding their contribution to the mental health of this group.
Individuals with Autism Spectrum Disorder (ASD) are known to be at increased risk of exposure to traumas such as maltreatment and abuse, however less is known about possible susceptibility towards the development of Posttraumatic Stress Disorder (PTSD) and associated risk factors. This study investigated the rates of trauma exposure and PTSD, and the role of cumulative trauma exposure and memory as risk factors for PTSD in adults who self-reported having received an ASD diagnosis, compared to a typically developing (TD) comparison group.
People with Autism Spectrum Disorder show an increased risk of experiencing potentially traumatic events, particularly social victimization. However, Autism Spectrum Disorder and Post-Traumatic Stress Disorder co-occurrence was hardly studied. We examined exposure to potentially traumatic life events and PTSD symptoms in adults with Autism Spectrum Disorder vs typical adults. Twenty-five adults with Autism Spectrum Disorder and 25 typical adults were comparable on age and gender. Participants self-reported on potentially traumatic life events of social and non-social nature, and on PTSD symptoms related to their most distressing event. Results showed higher rates of probable-Post-Traumatic Stress Disorder in the Autism Spectrum Disorder group (32%) compared with the typical adults group (4%). Individuals with Autism Spectrum Disorder reported more PTSD symptoms, particularly re-experiencing and hyper-arousal, compared with typical adults, although the latter was elevated only in females with Autism Spectrum Disorder. Participants with Autism Spectrum Disorder, especially females, reported more negative life events, particularly social events, than typical adults. Sixty percent of Autism Spectrum Disorder participants, but only 20% of typical adults, chose a social event as their most distressing event. Individuals with Autism Spectrum Disorder and probable-Post-Traumatic Stress Disorder co-occurrence presented poorer social skills compared with those with Autism Spectrum Disorder alone. Results indicate increased vulnerability of individuals with Autism Spectrum Disorder to trauma and Post-Traumatic Stress Disorder, especially due to social stressors. Females with Autism Spectrum Disorder may be particularly vulnerable to Post-Traumatic Stress Disorder.
Background: Coping can moderate the relationship between trauma exposure and trauma symptoms. There are many conceptualisations of coping in the general population, but limited research has considered how autistic individuals cope, despite their above-average rates of traumatic exposure.
Objectives: To describe the range of coping strategies autistic individuals use following traumatic events.
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.
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.
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