Emily Ferguson, PhD

All Publications

• Self-injurious behaviors with increased likelihood of injury in autistic youth: The role of distress linked to a strong preference for sameness. Autism : the international journal of research and practice Ferguson, E. F., Spackman, E., Hardan, A. Y., Uljarević, M. 2025: 13623613251396036

  Abstract

  Self-injurious behaviors in autistic youth vary widely in their form, intensity, and potential for physical injury. This study explored predictors of two categories of self-injurious behaviors that were delineated based on their potential for physical injury (self-injurious behavior-High Likelihood and self-injurious behavior-Low Likelihood), with a focus on the role of distress linked to a strong preference for routines (otherwise known as insistence on sameness). The sample included 1892 autistic youth (Mage = 10.82, SDage = 4.14; 22% females) across the United States. Distress associated with insistence on sameness was the strongest predictor of total self-injurious behavior scores, self-injurious behavior-Low Likelihood, and self-injurious behavior-High Likelihood, after controlling for demographic factors and speech level, and remained a unique predictor after accounting for variance explained by other restricted and repetitive behaviors. Sensory hypersensitivity and sensory-seeking were strong unique predictors of all self-injurious behaviors, while hyposensitivity was a weaker predictor of self-injurious behavior total and self-injurious behavior-Low Likelihood, and a non-significant predictor of self-injurious behavior-High Likelihood. Among demographic factors, lower household income was the strongest predictor of all self-injurious behaviors. Higher speech level was a positive predictor of self-injurious behavior-Low Likelihood but a negative predictor of self-injurious behavior-High Likelihood. These findings demonstrate the role of distress associated with insistence on sameness in manifestations of self-injurious behaviors and highlight the importance of exploring predictors at a more granular level to inform targeted interventions and support.Lay AbstractThis study explored factors associated with repetitive self-injurious behaviors in autistic youth, focusing on emotional distress linked to a strong preference for routines (often referred to as insistence on sameness), a category of behaviors that includes difficulties with change and a strong preference for routines and/or rituals. We examined two categories of self-injurious behaviors: lower likelihood of physical injury (self-injurious behavior-Low Likelihood) and higher likelihood of physical injury (self-injurious behavior-High Likelihood). The study included 1892 autistic youth of varying ages and cognitive abilities. The main finding was that distress associated with disruptions to routines was the strongest predictor of all types of self-injurious behavior. Youth with greater sensitivity to sensory input or sensory-seeking behaviors were more likely to engage in self-injurious behaviors that could increase risk of physical injury. In contrast, those with reduced sensitivity to sensory input were less likely to engage in self-injurious behaviors. Demographic factors also played a role in the manifestation and severity of self-injurious behaviors. Lower household income was strongly associated with greater self-injurious behavior severity. In addition, higher speech production (e.g. speaking in full sentences) was associated with greater severity of self-injurious behavior-Low Likelihood and self-injurious behavior-High Likelihood. These findings highlight the complexity of self-injurious behaviors in autistic youth and the importance of understanding the different factors that contribute to these behaviors. This study may help to contribute to the development of more responsive, tailored interventions for self-injurious behaviors among autistic youth.

  View details for DOI 10.1177/13623613251396036

  View details for PubMedID 41361937

• One Size Doesn't Fit All: Variability in Autistic Children's Response to Pivotal Response Treatment BEHAVIORAL SCIENCES Schuck, R. K., Jevtic, E., Ferguson, E. F., Millan, M., Slap, D. M., Uljarevic, M., Phillips, J. M., Hardan, A. Y., Gengoux, G. W. 2025; 15 (12)

  View details for DOI 10.3390/bs15121629

  View details for Web of Science ID 001646924200001

• Challenging Behavior Domains in Individuals With Neurodevelopmental Genetic Syndromes: The Role of Psychological Features. American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics Ferguson, E. F., Frazier, T. W., Hardan, A. Y., Uljarević, M. 2025

  Abstract

  Problem behaviors (PB) commonly co-occur in individuals with neurodevelopmental genetic syndromes (NGDs) and increase the risk of injury to oneself and others. Despite the prevalence and clinical impact of these behaviors, knowledge regarding the psychological risk markers for PB among individuals with NGDs is currently lacking. To fill this gap, we explored the relative contributions of key developmental (age, speech production) and clinical (emotion regulation, anxiety, sensory sensitivity, social communication) characteristics as predictors of unique PB subdomains in a sample of 255 individuals with NGDs (Mage = 14.16; SDage = 10.45; 51.0% male). Emotion dysregulation was a strong predictor of all subdomains of PB and the strongest predictor of aggression, conduct problems, and property destruction, after controlling for speech level and other clinical features. Lower social communication was the strongest predictor of elopement and self-injury. Distinct facets of anxiety showed unique patterns of associations with PB subdomains, such that higher physiological anxiety was significantly associated with elopement and aggression, while lower worry was associated with elopement. Speech level was a significant negative predictor of conduct problems and elopement. Future research is needed to replicate reported findings and to understand the predictors, maintaining factors, and complex interplay between these factors in the occurrence of PB subdomains among individuals with NGDs.

  View details for DOI 10.1002/ajmg.b.33049

  View details for PubMedID 40833200

• Transdiagnostic Examination of Interrelationships Between Anxiety, Insistence on Sameness and Compulsions. Autism research : official journal of the International Society for Autism Research Spackman, E., Chetcuti, L., Baker, E. K., Ferguson, E. F., Yerys, B. E., Herrington, J. D., Frazier, T. W., Leekam, S. R., Hardan, A. Y., Harrington, J. W., Uljarević, M. 2025

  Abstract

  Although insistence on sameness (IS) and compulsions occur across a wide range of neurodevelopmental (NDD) and neuropsychiatric (NPD) conditions, they are typically only examined within the confines of specific singular disorders. Indeed, while anxiety has been consistently linked to IS in autism and compulsions in obsessive-compulsive disorder (OCD), no empirical study has examined these associations in a sample spanning a range of NDD and NPD. Therefore, this study utilized a large sample of children and adolescents spanning several NDD and NPD to examine whether anxiety shows different patterns of association with IS or compulsions within and across diagnostic groups. The transdiagnostic sample encompassed youth (mean age = 10.36 [3.40]; N = 1852) diagnosed with autism (N = 387), attention-deficit hyperactivity disorder (ADHD; N = 931), internalizing disorders (N = 208), OCD/Tic disorder (N = 59) and oppositional defiant/conduct disorder (ODD/CD; N = 267). IS and compulsions were assessed using the Repetitive Behavior Scale-Revised, and anxiety using the Screen for Child Anxiety Related Disorders. Within-group comparisons revealed that, in the autism, ADHD, and OCD/Tic groups, anxiety showed a slightly stronger association with IS than compulsions although effect sizes indicated small to no effect (q < 0.24). Between-group comparisons showed that interrelationships between anxiety, IS, and compulsions did not differ across groups, except for the association between IS and compulsions, which was slightly weaker in the ADHD group compared to the autism (z = 4.20) and ODD/CD groups (z = 3.32). Findings affirm the transdiagnostic nature of IS and compulsions and suggest that anxiety plays a key role in these behaviors, irrespective of primary diagnosis.

  View details for DOI 10.1002/aur.70096

  View details for PubMedID 40878890

• Transdiagnostic Examination of Interrelationships Between Anxiety, Insistence on Sameness and Compulsions AUTISM RESEARCH Spackman, E., Chetcuti, L., Baker, E. K., Ferguson, E. F., Yerys, B. E., Herrington, J. D., Frazier, T. W., Leekam, S. R., Hardan, A. Y., Harrington, J. W., Uljarevic, M. 2025

  View details for DOI 10.1002/aur.70096

  View details for Web of Science ID 001541243900001

• Using Language Environment Analysis System (LENA) in Natural Settings to Characterize Outcomes of Pivotal Response Treatment. Journal of autism and developmental disorders Ferguson, E. F., Steele, M., Schuck, R. K., Millan, M. E., Libove, R. A., Phillips, J. M., Gengoux, G. W., Hardan, A. Y. 2025

  Abstract

  Despite the importance of monitoring changes in expressive language in early intervention, existing approaches to language assessment are often costly, time-intensive, and capture limited variability in autistic children. The Language ENvironmental Analysis (LENA) system has thus received considerable attention as an automated approach that may hold promise for capturing fine-grained changes in language development in a more efficient and cost-effective manner. However, evaluations of the utility of the LENA system for tracking response to early intervention in unstructured contexts are currently limited.This study aimed to build on prior research through evaluating the use of LENA in the context of a well-defined clinical sample from a randomized controlled trial (RCT) of Pivotal Response Treatment (PRT) that demonstrated expressive language gains across standardized and manually-coded measures.Exploration of automatically-derived LENA metrics (i.e., child vocalizations, conversational turns) revealed no significant association with standardized language assessments (i.e., Mullen expressive language subscale, MacArthur Bates Communicative Development Inventory, Vineland-II expressive language subscale). Furthermore, relative to the delayed treatment group, children participating in PRT did not show significantly greater improvement in the number of vocalizations or conversational turns during naturalistic, daylong LENA recordings collected in home settings from baseline to post-intervention.Implications and future directions for natural language sampling and the measurement of expressive language in early intervention are discussed.

  View details for DOI 10.1007/s10803-025-06740-z

  View details for PubMedID 40024967

  View details for PubMedCentralID 8862714

• Family experiences with supplemental social security income and legal guardianship for autistic adults: A mixed-methods study RESEARCH IN AUTISM SPECTRUM DISORDERS Ferguson, E. F., Clarke, E. B., Schisterman, N., Lord, C. 2025; 119

  View details for DOI 10.1016/j.rasd.2024.102522

  View details for Web of Science ID 001369946600001

• Family Experiences with Supplemental Social Security Income and Legal Guardianship for Autistic Adults: A Mixed-Methods Study. Research in autism spectrum disorders Ferguson, E. F., Clarke, E., Schisterman, N., Lord, C. 2025; 119

  Abstract

  Family interactions with the Supplemental Social Security Income (SSI) program and the decision to pursue legal guardianship are poorly understood in services research for autistic adults.We conducted a mixed-methods study and incorporated quantitative survey data from 122 autistic adults in an existing longitudinal cohort with qualitative interviews with 12 autistic adults and/or legal guardians. We explored associations between sociodemographic, developmental, and behavioral features with the likelihood of having SSI and a legal guardian at 25 years old. Spoken interviews were transcribed verbatim, and interviews were analyzed using a rapid qualitative analytic approach.There were quantitative differences in whether families were able to obtain SSI and guardianship based on intelligence quotient (IQ) scores, adaptive behavior, and autistic characteristics, but not by race, ethnicity, or maternal education. Qualitative data analysis revealed six themes that highlighted the challenges associated with obtaining and maintaining SSI, along with the complex, nuanced decisions associated with legal guardianship. Families noted many challenges in navigating these procedures and some potential benefits for each unique circumstance.These findings offer new perspectives on experiences associated with pursuing SSI benefits and legal guardianship for autistic adults, including similarities and key differences in these procedures. Findings also provide suggestions for future research to improve coordination and supports for families throughout adulthood.

  View details for DOI 10.1016/j.rasd.2024.102522

  View details for PubMedID 39670172

  View details for PubMedCentralID PMC11634058

• Toward improved understanding and treatment of self-injurious behaviors in autistic individuals with profound intellectual disability. Autism research : official journal of the International Society for Autism Research Ferguson, E. F., Russell, K. M., Licona, S. J., Cai, R. Y., Frazier, T. W., Vivanti, G., Gengoux, G. W., Hardan, A. Y., Uljarević, M. 2024

  Abstract

  Self-injurious behaviors (SIB) commonly occur in autism spectrum disorder (ASD) and span diverse topographies of self-inflicted behaviors ranging from head banging to hitting oneself against hard objects. Despite the high rates of SIB in autistic individuals, relatively little research has focused on psychological factors associated with the development and maintenance of SIB in individuals with autism and moderate-profound intellectual disability (ID). This commentary synthesizes existing literature on SIB and highlights the need for more research focused on psychological correlates and mechanisms in autistic individuals with moderate-profound ID. We highlight the key role of difficulties in emotion regulation (ER) and co-occurring internalizing symptoms in the manifestation of self-harm behaviors in clinical samples and autism. Furthermore, this commentary proposes a framework for understanding the interplay between poor ER and internalizing symptoms in the development and maintenance of SIB in autistic individuals with moderate-profound ID. Specifically, we explore the emergence of SIB in the context of precipitating cues that trigger strong emotions, ER processes and strategy deployment, and co-occurring internalizing symptoms. Future directions and implications for longitudinal research, measurement development, and clinical treatments are discussed.

  View details for DOI 10.1002/aur.3289

  View details for PubMedID 39688125

• Exploring the Heterogeneity of Self-Injurious Behaviors in Autistic Youth: Patterns, Predictors, and Implications for Intervention. Autism research : official journal of the International Society for Autism Research Ferguson, E. F., Spackman, E., Cai, R. Y., Hardan, A. Y., Uljarević, M. 2024

  Abstract

  Self-injurious behaviors (SIB) encompass a heterogeneous set of self-inflicted aggressive behaviors that are highly prevalent in autistic youth. Existing research on SIB in autism spectrum disorder (ASD) has been limited by significant methodological and conceptual inconsistencies. Thus, the current study leveraged item-level data capturing the severity of unique SIB topographies to further understanding of factors associated with distinct SIB in a sample of 582 autistic youth (Mage = 12.12, SDage = 3.68; range: 3-19 years; 13% females). Results suggest variation in severity endorsements for specific SIB topographies amongst autistic youth, such that 30%-50% of caregivers endorsed slight to very serious concern regarding the SIB topographies of bites nails/skin/fingers, scratches self, hits head/face/neck, bangs head against things, and picks skin. Generalized additive models demonstrated distinct patterns of associations between each SIB topography and dysregulation, sensory hypersensitivity, age, sex, IQ, and language level. Findings underscore the importance of exploring SIB as a multifaceted construct to capture unique correlates of distinct SIB that vary in severity and functional impact, which is critical for the development of effective interventions. This study represents an important step towards more individualized characterization of SIB and support for diverse presentations of these behaviors in autistic youth.

  View details for DOI 10.1002/aur.3269

  View details for PubMedID 39578711

• CHARACTERIZING ASSOCIATIONS BETWEEN CLINICAL FEATURES AND DIVERSE TOPOGRAPHIES OF SELF-INJURIOUS BEHAVIORS IN AUTISTIC YOUTH Ferguson, E. F., Spackman, E., Hardan, A., Uljarevic, M. ELSEVIER SCIENCE INC. 2024: S328

  View details for DOI 10.1016/j.jaac.2024.07.697

  View details for Web of Science ID 001330511903030

• ENHANCING UNDERSTANDING OF PREVENTION AND INTERVENTION FOR SUICIDAL AND SELF-HARM BEHAVIORS IN YOUTH Ferguson, E. F. ELSEVIER SCIENCE INC. 2024: S327

  View details for DOI 10.1016/j.jaac.2024.07.693

  View details for Web of Science ID 001330511903026

• Characterizing associations between emotion dysregulation, anxiety, and repetitive behaviors in autistic youth with intellectual disability. Autism research : official journal of the International Society for Autism Research Ferguson, E. F., Spackman, E., Cai, R. Y., Hardan, A. Y., Uljarević, M. 2024

  Abstract

  There is a paucity of research that explores associations between emotion dysregulation and the expression and severity of core and co-occurring characteristics of autism spectrum disorder (ASD), especially in autistic youth with co-occurring intellectual disability (ID). This study explored the interplay between developmental characteristics and emotion dysregulation, anxiety, and specific subtypes of RRBs that are elevated in autistic youth with co-occurring ID. Generalized additive models demonstrated that age, sex, language level, dysregulation, and anxiety showed unique patterns of association with subtypes of RRBs in a sample of 150 autistic youth with co-occurring ID who are non-speaking or minimally verbal. More specifically, higher anxiety levels were significantly associated with elevations in repetitive sensory motor behaviors (RSMB), self-injurious behaviors (SIB), insistence on sameness (IS), and unusual interests (UI). While emotion dysregulation was a significant predictor of UI, it demonstrated positive, albeit not significant, associations with the intensity of SIB and RSMB. Language level was a significant predictor of RSMB, such that the intensity of RSMB was higher for individuals who were non-speaking relative to those who spoke in single words. These findings provide preliminary insights into patterns of associations between emotion dysregulation, anxiety, and specific subdomains of RRBs in autistic youth with ID.

  View details for DOI 10.1002/aur.3207

  View details for PubMedID 39166396

• "There is No Help:" Caregiver Perspectives on Service Needs for Adolescents and Adults with Profound Autism. Journal of autism and developmental disorders Ferguson, E. F., Barnett, M. L., Goodwin, J. W., Vernon, T. W. 2024

  Abstract

  The underrepresentation of individuals with profound autism (who require 24/7 access to care) in autism research has resulted in limited knowledge about their service needs and a lack of evidence-based practices tailored to those needs. This study explored caregiver perspectives on service needs, barriers to accessing care, and treatment priorities to guide treatment development and improvement of service delivery. A sequential mixed-methods design integrated quantitative survey data (n = 423; Mage = 18.89 years; 26.7% female) with qualitative interviews (n = 20) with caregivers of adolescents and adults with profound autism. Quantitative findings indicated regular socialization opportunities were the most frequently endorsed unmet service need (60.3% of caregivers), followed by primary health care with autism-trained staff (59.3%), social skills instruction (55.8%), life skills instruction (51.3%), and behavioral support (47.3%). Higher likelihood of needing social activity groups was associated with elevated emotional reactivity, higher language level, minoritized ethnicity, and lower household income. Greater need for specialized primary health care was associated with lower income, while the need for social and life skills instruction was associated with increased age and elevated dysphoria. Qualitative analysis identified 10 themes that converged and expanded quantitative findings by highlighting a pervasive shortage of individualized, goal-oriented services, common barriers to care, and the priority of developing centralized treatment settings that coordinate care throughout adulthood. This study identified pressing service needs for adolescents and adults with profound autism in the United States. These insights are crucial for improving the accessibility and quality of clinical care.

  View details for DOI 10.1007/s10803-024-06451-x

  View details for PubMedID 38963473

  View details for PubMedCentralID 5919599