Emily J. Hickey

University of Wisconsin–Madison | UW · Waisman Center

Autistic adults experience challenges in maintaining employment; however, little is known about patterns of competitive employment through late midlife. This longitudinal study examined the change in hours of competitive employment for a cohort of autistic adults over a 22-year period. The study’s aims were to provide a fine-grained analysis of com...

Autistic individuals and their families are at risk for poor outcomes in employment and mental health and may be vulnerable to long-term effects of broader societal conditions. The aim of the current longitudinal study was to understand the impact of the Great Recession of 2007–2009 on autistic individuals and their mothers (N = 392). Hierarchical...

Introduction Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multisystem chronic disease estimated to affect 836,000–2.5 million individuals in the United States. Persons with ME/CFS have a substantial reduction in their ability to engage in pre-illness levels of activity. Multiple symptoms include profound fatigue, post-exertional...

Date Presented 04/22/2023 Autonomy, safety, and choice are critical components of self-determination for adults with intellectual and developmental disabilities (IDD). This study compares adults with IDD and their caregivers to show the impact of COVID-19 on self-determination. The role of OTs will also be discussed. Primary Author and Speaker: All...

Date Presented 04/22/2023 This study examines pre- and mid-pandemic access to health care and quality of life among adults with intellectual and developmental disabilities (IDD). Identification of barriers faced by adults with IDD allows practitioners to better address their needs by tailoring interventions and supports. Primary Author and Speaker:...

Background Family Navigation (FN) is an evidence-based care management intervention designed to reduce disparities in access to care by providing families with individually tailored support and care coordination. Early data suggest FN is effective, but effectiveness is significantly influenced by both contextual (e.g. setting) and individual (e.g.,...

Purpose: This qualitative study examines autistic adolescents’ perception of the quality of their relationship with their parent using the Three Minute Speech Sample. Methods: Twenty autistic youth (13–17 years; 83% male) spoke, uninterrupted, for three minutes about their thoughts and feelings regarding their mothers. Audio-recorded speech samples...

In this study, the relationships between child social functioning, parenting stress, and Part C Early Intervention (EI) enrollment were examined in 227 ethnically and racially diverse, low-income families of 15- to 27-month-old children. All toddlers in the sample were identified with or at high risk for developmental delay via universal screening...

Parents of autistic children experience more parenting stress and are at increased risk for poor mental and physical health compared with parents of neurotypical children; however, not all parents are distressed. The present study used a person-centered analytic approach to identify profiles of the parenting experience in a sample of 183 mothers an...

Research Objectives To capture symptom experiences of persons living with ME/CFS to increase clinicians’ understanding of this complex illness. Design Case Series. Setting Multi-institutional collaboration. Participants A convenience sample of 12 persons with mild (n=16.7%), moderate (n=58.3%), and severe (n=25.0%) ME/CFS. Participant age: mean...

This study assessed the feasibility, effectiveness, and sustainability of distributing "Learn the Signs. Act Early." developmental monitoring materials via home visitors through a federally funded home visiting program for families with young children.

Background Advances in health equity rely on representation of diverse groups in population health research samples. Despite progress in the diversification of research samples, continued expansion to include systematically excluded groups is needed to address health inequities. One such group that is infrequently represented in population health r...

Background: Advances in health equity rely on representation of diverse groups in population health research samples. Despite progress in the diversification of research samples, continued expansion to include systematically excluded groups is needed to address health inequities. One such group that is infrequently represented in population health...

Autistic youth are at risk for internalizing mental health problems such as depression and anxiety. Similarly, parents of autistic youth report higher levels of depression than parents of typically developing children. The goal of this study was to examine bidirectional associations between parent depression symptoms and the internalizing problems...

Objective(s) Little is known regarding after-effects of Long-COVID-19 (LC), while ME/CFS has been extensively researched. We performed a rigorous scoping review to inform a better definition of symptomatology of LC and cross-cutting similarities with ME/CFS. Our objective was to review the National Institutes of Health (NIH) ME/CFS Common Data Elem...

Over the past 10 years, identification of Autism Spectrum Disorder (ASD) risk has dramatically increased due to the wide-spread implementation of screening programs; yet, there is limited understanding about parent perceptions and experiences during the time period when risk is identified, but prior to receiving a formal diagnosis—a period that can...

Background Adults with autism spectrum disorder (ASD) have lower engagement in their communities, higher rates of unemployment/underemployment, and continued difficulties with challenging behavior compared to their neurotypical peers. Multi-family psychoeducation emphasizes education and problem-solving with the goal of improving these outcomes for...

Parents of children with autism spectrum disorder (ASD) show increased levels of parenting stress, but only one study has examined this association before a diagnostic evaluation. We conducted a cross-sectional study of parenting stress in 317 low SES parents with children at-risk for ASD before a diagnostic evaluation. Multiple regression modeling...

Lay abstract: Little is known about parent experiences throughout the diagnostic process for autism or how these parent experiences may help explain the disparities that exist between Hispanic and non-Hispanic families in time-to-diagnosis among children identified as at risk for autism. The current study examined trajectories of parenting stress,...

Objective: Families, pediatric providers, and service systems would benefit from expanded knowledge regarding (1) who is most likely to receive a recommended diagnostic evaluation after a positive primary care-administered autism screen and (2) of those who screen positive, who is most likely to be diagnosed with autism? Method: Participants inc...

Importance Early identification of autism spectrum disorder (ASD) is associated with improved cognitive and behavioral outcomes. Targeted strategies are needed to support equitable access to diagnostic services to ensure that children from low-income and racial/ethnic minority families receive the benefits of early ASD identification and treatment....

Background. Adults with autism spectrum disorder (ASD) have lower participation in post-secondary education, higher rates of unemployment/underemployment, and continued difficulties with challenging behavior and mental health problems compared to their peers. Multi-family psychoeducation emphasizes education and problem-solving with the goal of imp...

In 2016, the US Preventive Services Task Force concluded that there was "insufficient" ("I" statement) evidence to support universal primary care screening for autism spectrum disorder. The statement led to controversy among research and clinical communities. Although a number of papers have since been published arguing for the potential benefit of...

Family research in the field of ASD has focused on describing the impact of child challenges on parents, usually mothers, and given little attention to the ways in which mothers and fathers reciprocally influence the development of the child with ASD. The current study examined the direction of effects between the emotional quality of the mother-ch...

Little research has examined family emotional climate in the context of having a child with autism spectrum disorder (ASD). The goal of the current study was to determine how the emotional quality of family subsystems (parent–child and parent couple relationships, for both mothers and fathers) combine to create various classes of family emotional c...

This study aimed to define the core components of Family Navigation for autism spectrum disorder, a promising intervention to reduce disparities in care for this population. Teams from four trials of Family Navigation for autism spectrum disorder completed the Template for Intervention Description and Replication checklist to outline intervention c...

The broader autism phenotype refers to sub-clinical autism spectrum disorder characteristics involving socially and emotionally aloof and rigid personality traits and social communication difficulties. Relatives of individuals with autism spectrum disorder, including parents, evidence an increased rate of broader autism phenotype. The goal of this...

Parents of children with autism spectrum disorder (ASD) often report poor psychological well-being, including a high level of parenting stress and depressive symptoms. Little is known about the extent to which poor parent psychological well-being alters the emotional quality of the parent-child relationship in a context of child ASD. This study exa...

We compared the couple conflict of parents of children with autism spectrum disorder (ASD) to a comparison group of parents of children without disabilities using self-reported and observational measures. In total, 178 couples who had a child with ASD (aged 5–12 years) and 174 couples who had children without disabilities (aged 5–12 years), recruit...

When faced with child-related challenges associated with autism spectrum disorder, positive and negative social exchanges may be critical to parents’ psychological well-being. This study examined the types and sources of positive and negative social exchanges reported by mothers and fathers of children with autism spectrum disorder and their associ...