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. Wenn Lawson, Ph.D., delves into the intersection of autism, sexuality, and gender. He describes monotropism as a theory of attention and addresses common sex differences in autism. The presenter discusses gender dysphoria, its biological and physiological underpinnings, and its prevalence and impact on autistic individuals. Lawson highlights the need for autism-specific sexual education and walking with autistic people as they discover their gender identities. He reiterates the spectral nature of autism, gender, and sexuality and provides resources before the Q&A. 

Handouts are online HERE

In this webinar:

1:00 – Introduction
3:10 – Outline and poem: Who Am I?
5:30 – The spectrums of gender, sexuality, and autism
9:10 – Monotropism
15:00 – Sex differences in autism
22:55 – Gender dysphoria
31:20 – Physiological underpinnings of transgenderism
35:20 – Genetic underpinnings of sex determination
40:15 – Gender determination across development
44:30 – Summary and conclusion
51:25 – Q&A

The spectrums of autism, gender, and sexuality

Lawson reads a poem titled Who Am I? to illustrate what it’s like to live in a binary world as an autistic transgender person (3:50). He underscores that gender and sexuality are separate and that, like autism, they both occur on a spectrum (5:30). The presenter asserts that non-verbal individuals should not be assumed as unintelligent, highlighting that many co-occurring conditions also impact the way people see and understand autism (6:40). Lawson explains that separating social, public, and private matters can be complicated for autistic people. They may ask questions like, “Why can we swim without a swimsuit at home but not in public?” or “Why do they call restrooms private when there are lots of people in there all the time (8:15)?” 

Monotropism: Autism as a matter of attention

The presenter shares a YouTube video explaining autism as a matter of attention (9:10). The host, Quinn, discusses monotropism, a theory about how the flow of attention differs between autistic and allistic (non-autistic) people (12:00). If, for example, we have ten focus points, an allistic individual would allocate around five to the main task and the rest to other less critical items. However, autistic people (monotropic) allocate differently, placing eight or nine of the focus points on the main item with much less to distribute across other things (13:25). Lawson explains that with so much mental force propelling you in one direction, it is challenging to switch tasks or thoughts. 

For more information, visit monotropism.org

Sex differences in autism

The speaker notes that, despite historical research biases, we now understand that autism is just as common in females as it is in males (15:00). However, presentation and experiences of autism differ significantly according to the individual (16:25). Lawson discusses common misconceptions about autism in females like the assumption that social competence excludes the potential for autism. He explains that autistic females may struggle more with anxiety and how tics like finger curling or nose crunching are often overlooked (19:00). 

Due to monotropic flows of attention, autistic people often have difficulty comprehending broader cultural and social norms compared to their allistic peers (22:55). Lawson explains how this lack of understanding can leave autistic children vulnerable to abuse and maltreatment as they may not understand which behaviors are or are not acceptable (24:55). 

Check out Dr. Lawson’s novel The Very Secret Diary of Jesse Jones. It tells the story of a young non-binary autistic person trying to work out what ‘comfort’ and ‘discomfort’ feel like, how to separate ‘appropriate’ from ‘inappropriate,’ and how to focus on school work, even when it’s not interesting. 

*Currently available on Thriftbooks, Barns & Noble, and other websites

Gender dysphoria

Gender dysphoria is a condition where a person experiences discomfort or distress due to a mismatch between their biological sex and gender identity. Lawson discusses the prevalence of gender dysphoria in autism, highlighting its biological nature and physiological basis (26:15). He highlights that over 40% of transgender individuals living with gender dysphoria attempt suicide, underscoring the need to understand drivers of mental health (30:10). The speaker highlights the importance of staying in tune with our young people and walking with them through these processes of discovery which can be very scary and uncomfortable (28:10). 

Physiological underpinnings of transgenderism

The speaker shares a video that discusses how cells communicate based on the presence or absence of specific chemicals that dictate developmental pathways in humans (31:20). He explains that male and female reproductive organs originate from the same place, depending on which pathway is activated (33:00). Therefore if a fetus is exposed to the wrong chemical at the wrong time, it can activate pathways that may not otherwise take effect (34:05). 

Genetic underpinnings of sex determination

The video explains that early exposure to testosterone is known to affect developing embryos, noting that some people with XX chromosomes have congenital adrenal hyperplasia, causing an overproduction of testosterone (35:20). Similarly, androgen insensitivity syndrome, which occurs in people with XY chromosomes, keeps targeted cells from receiving testosterone, meaning those tissues default to the developmental pathways for female organs (38:10). In this case, the child will be genetically male but outwardly “look” and grow up as female, illustrating the fact that, in reality, gender is not binary (39:30). 

Gender determination across development

The video emphasizes that gender variation occurs in many stages of development. Therefore, if you have abnormal hormone levels at one stage but balanced ones in another, you can get a physiological mismatch between reproductive systems and brain development (40:15). The presenter explains how identity exists within a neurological framework because people have an innate sense of who they are that is based on genetics and physiology and is not changeable (41:55). The speaker underscores alleviating the shame and stigma around being transgender, reiterating that it is not a mental health disorder. They urge viewers to take this journey because the destination is worth it and to not be weighed down by the judgments of others (44:00). 

Summary and conclusion

Lawson reiterates the physiological and neurological bases of gender and asserts the need for more extensive and individualized sexual education in autism (44:30). He highlights that autistic people are sexual, too, and that if parents/caregivers do not educate them, they will learn from other sources. The presenter underscores the availability of porn and the predisposition to intense focus (monotropism) that many autistic people experience (45:45). It is critical, he continues, that we walk with autistic people as they discover their gender (47:55). Lawson notes that personal trauma and baggage can cloud our thinking and keep us from seeing people for who they are (49:00). The speaker concludes that there is no such thing as typical gender or sexuality and that depression, suicide, and mental illness are often linked to issues with gender and sexual identity (50:00). Lawson provides websites and resource lists before the Q&A (51:25).

Resources:

• The Autistic Trans Guide to Life is available here and on Amazon. 
• Transitioning Together, One Couple’s Journey of Gender and Identity is available here and on Amazon.
• Not The Norm, a website offering help to navigate autism and pornography is here
• Autism & Mental Health MOOC (Mass open online course) is free and can be found here

Originally published June 2, 2024

Hilde Geurts, Ph.D., discusses the impact of aging on health, quality of life, and cognition in autistic adults. She discusses aging in the general population and how it relates to autistic experiences. The speaker considers differences in aging experiences across groups and how they inform autism care and research. Geurts dives into cognition and aging, highlighting potential cognitive aging profiles for autism and what evidence there is to support them. The presenter discusses avenues and caveats for future research before the Q&A.

In this webinar: 

0:00 – 4:55 – Organization introductions
4:56 – Speaker and affiliate introduction
7:20 – Outline
8:50 – Aging in the general population
13:15 – Autism and aging
15:30 – Health and quality of life across groups
24:10 – Similarities in differences across groups
30:00 – Aging and cognition
36:00 – Cognition profiles
41:45 – What’s next?
44:50 – Q&A

Aging in the general population

Geurts outlines presentation goals and highlights the overlap of mental health, cognition, and quality of life (QoL) (7:20). She briefly describes a ten-year study on autism heterogeneity from which much of the data discussed is drawn (8:30). The speaker outlines the three pillars of a successful aging process, as described by Rowe & Kahn in 1997: 

1. Minimize risk of disease and disability
2. Maintain physical and cognitive function
3. Continue engagement with life

She explains that our bodies undergo physical and cognitive changes as we age, like brain shrinkage, decreased flexibility, and increased forgetfulness. Conversely, happiness and quality of life (QoL) increase with age in the general population (9:55). Geurts lists risk factors for aging, including genetics, poverty, stress, physical and mental health, and a lack of social support. She underscores that many of these are more prevalent in autistic adults and considers whether or not this means that autistic people are at risk for aging faster with a lower QoL (11:30).

• Aging and heterogeneity regarding autism spectrum conditions: a protocol paper of an accelerated longitudinal study (Geurts et al., 2020)
• Successful Aging (Rowe & Kahn, 1997)

Autism and aging

The presenter describes patterns of co-occurring conditions in autism. She cites studies showing that those who receive a late autism diagnosis have a higher chance of mental health disorders and that people assigned female at birth have a higher chance of general health problems (13:15). Therefore, Geurts considers whether late-diagnosed female-presenting autistic adults are at higher risk for mental health difficulties (14:45). 

• The physical and mental health of middle-aged and older adults on the autism spectrum and the impact of intellectual disability (Bishop-Fitzpatrick & Rubenstein, 2019)
• Health Conditions and Functional Status in Adults with Autism: A Cross-Sectional Evaluation (Fortuna et al., 2016)
• General health of adults with autism spectrum disorders–a whole country population cross-sectional study (Rydzewska et al., 2019)
• Objective and subjective psychosocial outcomes in adults with autism spectrum disorder: A 6-year longitudinal study (Scheeren et al., 2022)
• Associations between co‐occurring conditions and age of autism diagnosis: Implications for mental health training and adult autism research (Jadav & Bal, 2022)

Health and quality of life across groups

Geurts details a recent study showing that autistic adults have more mental health conditions compared to controls, with a peak in prevalence between 40 and 54 years old (15:30). She describes research that revealed autistic women experience more menopausal problems and depressive symptoms than their non-autistic peers. Therefore, the speaker posits that the observed peak in middle-aged mental health conditions could be in part attributed to the menopausal experiences of female-presenting autistic adults (17:00). 

• Psychiatric Co-occurring Symptoms and Disorders in Young, Middle-Aged, and Older Adults with Autism Spectrum Disorder (Lever & Geurts, 2016). 
• Menstruation and menopause in autistic adults: Periods of importance? (Groenman et al., 2022) 

The speaker presents data showing a decline in social anxiety with age in autism, where participants reported caring less about what other people think of them and feeling more comfortable in their own skin (20:15). She notes the impact of camouflaging on mental health and considers the intersection of age, camouflaging, and mental health in autism (22:35). Geurts summarizes that research to date shows both mental and physical health problems are more common in autistic adults, though causes differ across groups (i.e., menopause, camouflaging). She asserts that these differences are essential for understanding autism subgroups (23:38). 

• How to measure camouflaging? A conceptual replication of the validation of the Camouflaging Autistic Traits Questionnaire in Dutch adults (van der Putten et al., 2023)

The similarities and differences between autistic profiles are crucial for identifying subgroups of autism and finetuning research and care. Geurts describes a study that revealed autistic adults feel more vulnerable and like they have less control and emotional support compared to non-autistic adults (24:10). Feelings of control and emotional support were stable at two and five-year follow-ups and predicted mental health and QoL (27:50). The speaker notes that between 14% and 17% of participants switched profiles across time, underscoring the need to study those changes and how they affect QoL and mental health (28:30). 

• Finding Similarities in Differences Between Autistic Adults: Two Replicated Subgroups (Radhoe et al., 2023)

Aging and cognition

Cognition is a predictor of Neurocognitive Disorders (NCD), like dementia, which are diagnosed five times as often in autistic adults compared to the general population (30:00). NCD diagnoses generally include:

• Cognitive challenges.
• A significant decline in daily life.
• Low performance in at least one cognitive domain (i.e., memory, flexibility, social cognition).

The speaker cites research revealing more self-reported cognitive challenges and lower performance in social and quick response (flexibility) tests for autistic adults compared to controls (32:18). She asserts that although autistic people are more likely to meet phenotypic NCD criteria, the underlying mechanisms may not align. 

• Prevalence of physical and mental health conditions in Medicare-enrolled, autistic older adults (Hand et al., 2020)
• A longitudinal study on cognitive aging in autism (Torenvliet et al., 2021)
• Age-related differences in cognition across the adult lifespan in autism spectrum disorder (Lever & Geurts, 2016) 
• Parallel age-related cognitive effects in autism: A cross-sectional replication study (van der Putten et al., 2022)
• Self-reported cognitive decline among middle and older age autistic adults (Klein et al., 2023)

For example, research shows that depressive symptoms may drive self-reported cognitive challenges in autism, meaning that mood, not memory, is the issue (34:00). Geurts notes that cognitive differences were observed across autism independent of age, meaning that there is no significant evidence that autistic individuals experience faster cognitive decline compared to the general population (35:24). 

• When mind and measurement diverge; the interplay between subjective cognitive complaints (SCCs), objective cognition, age, and depression in autistic adults (Torenvliet et al., 2024)
• The cognitive profile of middle-aged and older adults with high vs. low autistic traits (Stewart et al., 2023)
• A longitudinal study on cognitive aging in autism (Torenvliet et al., 2021)

Cognitive aging profiles

Geurts outlines three cognitive aging profiles comparing autism and controls: Faster, Parallel 1, and Parallel 2, where Parallel 1 has no cognitive difference by age and Parallel 2 does. No conclusive or replicable evidence supports the Faster cognitive aging profile for autism, though comparatively early decline has been found in individual cognitive domains (36:00). The speaker describes recent research suggesting parallel cognitive aging patterns between autism and the general population (37:00). For example, an autistic middle-aged person may have the same cognitive profile as someone who is older and not autistic. Geurts asserts that this could be why some autistic adults feel older or that they are declining faster, though this may not be the case (38:41). The presenter urges viewers to be careful in diagnosing NCD, especially in autistic adults, where NCD presentations could result from a different, less-understood cognitive profile (39:53). She reiterates that little to no evidence exists for accelerated (faster) cognitive aging in autism, though some adults with autism have old-age profiles (40:30). 

• One size does not fit all: An individualized approach to understand heterogeneous cognitive performance in autistic adults (Torenvliet et al., 2023)

What’s next?

Future research on the intersection of cognition, aging, and autism must consider how the age of diagnosis and assigned sex seem to play a role. Geurts also underscores the need for research that includes people with intellectual disabilities and early diagnosis (41:45). 

• Autism Through the Ages: A Mixed Methods Approach to Understanding How Age and Age of Diagnosis Affect Quality of Life (Atherton et al., 2020)
• Associations between co‐occurring conditions and age of autism diagnosis: Implications for mental health training and adult autism research (Jadav & Bal, 2022)
• Objective and subjective psychosocial outcomes in adults with autism spectrum disorder: A 6-year longitudinal study (Scheeren et al., 2022)
• Cognitive and language skills in adults with autism: a 40-year follow-up (Howlin et al., 2014)

The presenter asserts that current avenues of research should focus on the interplay of mental and physical health problems in autistic adults, drivers of seemingly age-related health changes, and subgroups that may be at risk for faster aging. She notes two studies currently under review for publication (42:30). Geurts provides thanks and acknowledgments before the Q&A (44:50). 

• The prevalence and incidence of early-onset dementia among adults with autism spectrum disorder (Vivanti et al., 2021)
• The influence of age and ASD on verbal fluency networks (Baxter et al., 2019)

Originally published April 9, 2024