Mojdeh Mostafavi, MD, shares her deeply personal journey as a sibling supporting a loved one with profound autism. She describes her experiences from early childhood through adulthood, highlighting the challenges and triumphs that her family and care team have experienced. The speaker shares ten meaningful insights about her family’s journey, highlighting the importance of communication and advocacy from a very young age. Mostafavi emphasizes the complexities of ever-evolving sibling relationships before the Q&A. 

In this webinar

2:00 – Introduction
4:30 – Early life, diagnosis, and family response
9:00 – The role of siblings and at home care
14:05 – Behavioral challenges during adolescence
17:00 – Adulthood milestones and medical crises
21:30 – Ongoing care and the unknown future
23:00 – Welcome to Holland – a sibling’s perspective
27:00 – Ten reflections from an adult sibling of someone with profound autism
34:00 – Communication challenges and triumphs
43:00 – Family, community, care teams — the importance of support
47:40 – Q&A

Early Life, Diagnosis, and Family Response

Mostafavi’s brother was born in 1995, when she was just two years old. During pregnancy and early infancy, his development seemed uncomplicated. However, at around 18 months, their parents, both medical professionals, noticed a profound developmental regression. He began losing words as he learned new ones, stopped responding to his name, started to avoid eye contact, and exhibited classic stimming behaviors like lining up toys, hand flapping, and finger twisting. The speaker explains that this regression occurred within a five-or six-week period, during which his preschool teacher suggested they get an autism assessment (4:30).  

In 1996, her brother was diagnosed with autism; this was a traumatic experience for her parents, who received a largely negative prognosis. Her parents recall being told that he would likely never speak or live independently and that many strongly suggested institutionalization. Mostafavi reminds viewers that during the mid-1990s, autism prevalence was reported as 1 in 10,000, so there was very little understanding or resources available (7:00). Undeterred, her parents embarked on a journey of self-education, extensively researching interventions and support strategies. They successfully pioneered a home-based program to address their son’s profound needs in an area with few specialized services.

The Sibling’s Role: Integration and Transformation

Growing up, Mostafavi’s life was intrinsically linked to her brother’s care. Their home was a hub for various therapies, including occupational therapy (OT), speech-language pathology (SLP), and ABA. From a young age, she was actively involved in these sessions, often tasked with modeling behaviors or assisting therapists. The speaker emphasizes how this deep involvement made her feel valued and important, which mitigated feelings of being a “glass child” and fostered an understanding and supportive sibling relationship (9:00). It was in her elementary years, around ages six to eight, that she first recognized the unique differences in her family life compared to her peers (12:00). 

Adolescence and Behavioral Challenges

Adolescence proved to be an exceptionally challenging period for her brother, particularly due to his limited verbal communication skills and subsequent difficulty expressing his needs and emotions. These challenges often led to intense behavioral outbursts, primarily aggression, including hair pulling, scratching, and biting, usually received by herself or her mother (14:05). Mostafavi underscores that her brother showed remorse after such outbursts, highlighting not only their close bond, but also the lasting distress externalized behaviors can have on everyone involved. The hormonal shifts of puberty further complicated her brother’s ability to self-regulate. The presenter recalls the incredible support they received from her brother’s care team and how they assisted in navigating this challenging moment for their family (15:00). Mostafavi notes her brother’s naturally loving disposition, stating that, even in these hard moments, 95% of the time, it was just awesome. It was that 5% where he struggled with communication that would result in aggressive behaviors.

Adulthood and medical crises

Mostafavi highlights that her experience differs from many because all the support systems they had took place in their home. During early adulthood, her brother reached many key milestones, like going to the movie theater, getting his first hair cut at the barber, and getting his wisdom teeth removed (17:00). The speaker briefly describes the first severe medical crisis her brother had when he was 27, which led to hospitalization and an induced coma. The cause was eventually traced to severe, unexpressed pain, leading to extensive medical evaluation and ultimately a diagnosis and intervention. The presenter comments on how disruptive it was to the entire family to be unable to manage and care for her brother at home. This process forced the family to reassess their resources, their son’s evolving needs, and the family’s well-being. It was a transformative period that instilled a deeper sense of awareness and appreciation for the ongoing challenges of supporting a loved one with profound autism (20:00).

Her brother remains at home with their parents, benefiting from a consistent care team, some of whom have been involved for over a decade. While aggression has subsided, he still experiences self-injurious behaviors, mainly head-hitting, often linked to unexpressed pain. The family is actively working with his medical team to mitigate these symptoms and behaviors. Despite these ongoing challenges, a home-based program with his long-standing care team remains the most effective option for his needs (21:30).

Reflections on the complexities of being a sibling

To articulate the sibling experience, the speaker references Emily Pearl Kingsley’s poem, Welcome to Holland, originally about the parental journey of having a child with special needs. Mostafavi adapts this analogy to the sibling perspective, explaining that a child growing up in “Holland” (a life with a sibling with autism) doesn’t initially understand the concept of “Italy” (a typical life). As they grow, they begin to recognize differences and form their understanding of the world, realizing that “Holland” is the only life they’ve ever known. This perspective highlights that the complexity and evolution of their unique life journey only become fully appreciated in adulthood (23:00). 

The speaker provides ten insights/reflections on her experiences as a sibling of someone with profound autism. She emphasizes the multifaceted and ever-evolving nature of the sibling relationship, explaining that their dynamic constantly shifts as both individuals navigate life stages—childhood, adolescence, and adulthood. For Mostafavi, this role often includes aspects of caregiving and, in the future, the role of guardian (27:00). She clarifies that her experience doesn’t align with the “glass child” concept because of her deep integration into her brother’s care, which made her feel valued. However, she acknowledges the profound and complex emotional and psychological impact, including feelings such as hurt, anger, guilt, frustration, love, sadness, and grief. All of these require continuous coping strategies even today (30:00). 

A significant aspect of the speaker’s experience is the unique “language” or means of communication she shares with her brother and sister. Living with someone with substantial verbal communication challenges has honed her ability to understand and interpret non-verbal cues (34:00). She touches on the importance of advocacy and empowerment from a young age and the complexities of planning for the future (40:00). Mostafavi asserts the importance of finding “your people” and navigating social life and relationships. The power found in people who support, nourish, and understand the nuances of your life cannot be understated (43:00). The speaker ends by reminding viewers that these are her experiences and that this may look different for everyone. During the Q&A, she discusses therapy for siblings and much more (47:40). 

Originally published on January 6th, 2025

Emily Ferguson, Ph.D., discusses self-regulation strategies for self-injurious behaviors (SIB). She outlines recent research on the frequency and distribution of different SIBs across a large sample, underscoring the importance of assessing individual behavior severity instead of an overall SIB score. The presenter considers the role of emotion regulation in SIB interventions. Ferguson considers emotion recognition, coping strategies, and prevention methods and provides free online resources for parents and clinicians.

In this webinar:

2:25 – Self-injurious behavior and autism
7:20 – Study: Frequency and distribution of unique SIBs
10:30 – Results
17:25 – Summary
19:45 – Helpful questions
22:20 – Adult self-reports
24:12 – Dialectical behavior therapy (DBT)
27:00 – Emotion regulation (ER) and challenging behaviors
30:45 – Emotion recognition and ER strategies
33:55 – Prevention
39:30 – Resources
42:40 – Q&A

Self-injurious behavior and autism

Ferguson explains that self-injurious behaviors (SIBs) are present in 40 – 50% of autistic people. They often persist in varying forms and intensities across the lifespan and significantly increase the likelihood of tissue damage or physical injury, hospitalization, and more restrictive residential placements (2:25). Common forms of repetitive behaviors include head-banging, skin-scratching, self-hitting, hair-pulling, lip or cheek-biting, nail-biting, skin-picking, and hitting against hard objects. Research shows that lower speech production, lower cognitive functioning, greater emotion dysregulation, greater sensory sensitivity, sex, and age are all linked to greater severity of SIB (6:30). The presenter notes that measurements and conceptualization of SIB vary across studies (5:25).

Frequency and distribution of unique SIBs

The speaker outlines her recent publication on the frequency and distribution of unique SIBs across a large sample. The study uses 593 survey responses to explore speech level, cognitive function, emotion dysregulation, and sensory sensitivities for each of the eleven most common non-suicidal SIBs (7:20).

Roughly 30-50% of caregivers reported mild to severe concerns for many types of SIB, highlighting the importance of looking at severity for every kind of SIB instead of an overall score. Results show that higher emotion dysregulation, or difficulty managing, responding, or calming strong emotions, was significantly associated with greater severity of nine types of SIB ranging from self-hitting to skin-picking (10:30). Higher sensory hypersensitivity was associated with greater severity of self-scratching (with and without tissue damage), repetitive hair-twirling, and skin-picking and lip-biting (with and without tissue damage). Ferguson asserts these findings indicate that these types of SIB may be a means of self-soothing or communicating distress in response to overwhelming sensory stimuli (13:30).

Self-scratching, self-hitting, and lip-biting (with tissue damage) were significantly associated with lower IQ, suggesting that the presence of intellectual disabilities (ID) might increase the risk of engaging in specific types of SIB. The study also found that youth who speak in full sentences demonstrate lower severity of self-hitting and head-banging than youth who use no words to communicate. Ferguson reiterates that self-hitting and head-banging may be a way of communicating, especially for autistic people with ID who are non-verbal (15:45). 

She summarizes research findings, reiterating the important insights we can gain by examining the severity of unique types of SIB rather than their overall occurrence. She notes that head-banging and self-hitting can result in serious physical harm, posing a greater risk to those with lower IQs and speech ability (17:25). 

The speaker suggests asking these questions to help determine causes and care strategies for SIB (19:45):

• Is the situation placing demands that exceed ER skills? (Adaptive emotion regulation (ER) skills)
• Is the behavior in response to unmet sensory needs or sensory overload? (Sensory dysregulation)
• Are the demands on the individual too high or low for their cognitive level? (Cognitive capacities)
• Does this person have a functional way to communicate? (Adequacy of communication system)

•  Exploring the Heterogeneity of Self-Injurious Behaviors in Autistic Youth: Patterns, Predictors, and Implications for Intervention (Ferguson et al., 2025)

Adult Self-Reports

The presenter outlines a recent study by Moseley and colleagues that asked autistic adults about the perceived role of non-suicidal SIBs (a more extensive list than the previous study). Participants reported hurting themselves in order to feel something, change emotional pain into something physical, relieve stress or pressure, deal with frustration, shock or hurt someone, self-punishment, and to prevent hurting themselves in other ways (22:20). 

• A ‘choice’, an ‘addiction’, a way ‘out of the lost’: exploring self-injury in autistic people without intellectual disability (Moseley et al., 2019)

Dialectical behavior therapy (DBT)

Dialectical Behavior Therapy (DBT) was developed for people with borderline personality disorder but can be applied to people across the spectrum of life. DBT is often a first-line treatment for people who engage in SIB or have suicidal thoughts or tendencies. It works to identify and distinguish repetitive behaviors, accepting the ones that serve a good purpose while changing others that increase the risk of harm to self or others (24:21). 

Emotion regulation and challenging behaviors

The speaker outlines the pathway from difficulties with ER to challenging behavior presentation and considers the role that self-regulation has in SIB interventions (27:00):

 Individual factors (hungry or tired) → precipitating cues (loud/surprising noise) → difficulty identifying and labeling emotions (overwhelmed) →  negative experience continues or increases (no coping strategy) → challenging behavior is expressed.

Emotion recognition

Emotion recognition can be difficult for everyone, and creating a personalized feeling chart can significantly help. Ferguson discusses how to make a feeling chart that captures the sounds and feelings of one’s emotions as well as what someone needs in those moments (30:45). 

Emotion regulation (ER) strategies

ER strategies include coping skills and co-regulation techniques, which the speaker suggests should be practiced daily. For caretakers, it is essential to do these things with their child or patient to model effective coping strategies. Ferguson highlights the benefits of parent skills training and provides a free training video that teaches some quick coping skills for calming down and returning to a place where you can work through problems and big emotions more effectively (31:40). 

• https://www.youtube.com/watch?v=0cq5RuE8SXk

Prevention

SIB prevention techniques focus on reducing the likelihood of distressing situations or contexts. If an SIB consistently occurs in a specific location, consider what about that place may cause distress to you or your child. It’s also helpful to note setting events, like sleep, that can affect irritability and ER throughout the day (33:55). The Research Units in Behavioral Intervention (RUBI) provides free online materials to help with SIB prevention.

• https://academic.oup.com/book/1248/chapter/140180019

Functional behavior analyses of problem behaviors are commonly used to identify antecedents, behaviors, and consequences and can help identify positive and negative communication cycles. Ferguson emphasizes that behavioral approaches must be strengths-based and aimed at reducing negative impact. Other prevention methods include mental health therapies and parent training in behavior management, as outlined in the RUBI resources and Parent-Child Interaction Therapy (ages 2 – 7) (35:55). The speaker shares a clinical guide for treating severe behaviors, toolkits, and ECHO training (39:30) before the Q&A (42:40). 

Resources provided during the talk and in text:

• Article by Dr. Ferguson mentioned in the talk: https://onlinelibrary.wiley.com/doi/full/10.1002/aur.3269
• ECHO Autism Challenging Behavior: https://echoautism.org/challenging-behavior/
• Autism Speaks Challenging Behavior Toolkit: https://www.autismspeaks.org/tool-kit/challenging-behaviors-tool-kit
• RUBI intervention online materials: https://academic.oup.com/book/1248/chapter/140180019
• Moseley article referenced during the talk: https://link.springer.com/content/pdf/10.1186/s13229-019-0267-3.pdf

Originally published December 3, 2024.

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).