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Improving Emergency Department Care for Suicidality in Autism: Perspectives from Autistic Youth, Caregivers, and Clinicians

Cervantes, Paige E; Palinkas, Lawrence A; Conlon, Greta R; Richards-Rachlin, Shira; Sullivan, Katherine A; Baroni, Argelinda; Horwitz, Sarah M
UNLABELLED:ABSTRACT: Purpose: Emergency department (ED) visits for suicidal ideation and self-harm are more prevalent in autistic than non-autistic youth. However, providers are typically offered insufficient guidance for addressing suicide risk in autistic youth, likely impacting confidence and care. METHODS:In this pilot study, we conducted semi-structured interviews with 17 key members of the autism community (i.e., autistic youth with a history of suicidality, caregivers of autistic youth with a history of suicidality, autism specialist clinicians, ED clinicians) to inform the development of recommendations for modifying ED care for autistic patients, with a focus on suicide risk screening and management. RESULTS:Participants reported on challenges they encountered receiving or providing care and/or recommendations for improving care. Participant perspectives were aligned, and four main categories emerged: accounting for autism features, connection and youth engagement in care, caregiver and family involvement, and service system issues. CONCLUSION/CONCLUSIONS:As research continues in the development of autism-specific suicide risk assessment tools and management strategies, it is essential we better equip providers to address suicide risk in autistic patients, particularly in ED settings.
PMID: 38819705
ISSN: 1573-3432
CID: 5663952

Assessing and Managing Suicide Risk in Autistic Youth: Findings from a Clinician Survey in a Pediatric Psychiatric Emergency Setting

Cervantes, Paige E; Li, Annie; Sullivan, Katherine A; Seag, Dana E M; Baroni, Argelinda; Horwitz, Sarah M
Suicidal thoughts and behaviors (STB) and emergency department (ED) utilization are prevalent in autistic youth. The current study surveyed clinicians in a pediatric psychiatric ED to examine differences in attitudes on suicide-related care for autistic and non-autistic patient populations. While clinicians rated addressing STB in ASD as important and adaptations to care as necessary, less than half identified ASD as a suicide risk factor and confidence ratings were significantly lower for autistic patients. Previous ASD training predicted confidence and accounted for approximately 25% of the variance in confidence scores. Findings highlight the urgency to develop and disseminate ED clinician training, and address the lack of validated assessment tools, adapted suicide prevention practices, and evidence-based treatments for STB in autistic youth.
PMID: 35122186
ISSN: 1573-3432
CID: 5154042

The relationship between parent and child characteristics among families receiving a caregiver-mediated social skills intervention for autism [Meeting Abstract]

Shalev, R A; Gordillo, M; Sullivan, K; Chen, B; Doggett, R; Laugeson, E; Kuriakose, S; DiMartino, A
Objectives: A growing literature indicates that caregiver-mediated social skills interventions increase social competence among children with autism; however, very little is known about the role of parent characteristics in treatment success. As an initial step toward closing this gap, we examined the following: 1) the feasibility of collecting measures of caregivers and children enrolled in these interventions in a clinic setting; and 2) the relationships between baseline measures of caregivers and their children. Methods: We enrolled 19 children with autism (15 males; mean age = 11 +/- 3 years) and 19 caregivers (one per child; 15 females; mean age = 48 +/- 8 years) in either the Program for the Education and Enrichment of Relational Skills (PEERS) or the Children's Friendship Training. The Social Responsiveness Scale, 2nd Edition parent report (SRS-2-P) and the Child Behavior Checklist (CBCL) parent report were used to index children's autism severity and their internalizing and externalizing symptoms of psychopathology. Parent autistic traits were assessed using the SRS-2 adult form (SRS-2-A), which were completed by their spouses. Parent-rated Positive Affect Index (PAI) assessed the quality of the parent-child relationship. We measured the relationship between child and caregiver characteristics using two-tailed bivariate correlations. Results: Relationship quality, as measured by the PAI, varied across families (mean age = 47 +/- 8 years). High relationship quality was correlated negatively with scores of the CBCL Externalizing Problems Scale (r = -0.69, P = 0.004) and several subscales that load onto this scale (e.g., aggressive behavior, r = -0.73, P = 0.002). The SRS-2-P scores indicated that children have clinically significant scores, whereas the SRS-2-A scores indicate their caregivers do not. There was no significant relationship between SRS-2-P and SRS-2-A scores (r = -0.03, P = 0.94) or PAI and SRS-2-P scores (r = -0.30, P = 0.40). Conclusions: Results indicate that it is feasible to collect caregiver and child data in the context of a clinic-based, caregiver-mediated intervention. Preliminary data underscore the relationship between caregiver-child relationship quality and externalizing behavioral challenges in children with autism. This relationship should be investigated as a potential mediator of treatment effects
ISSN: 1527-5418
CID: 2401572

Measuring social communication behaviors as a treatment endpoint in individuals with autism spectrum disorder

Anagnostou, Evdokia; Jones, Nancy; Huerta, Marisela; Halladay, Alycia K; Wang, Paul; Scahill, Lawrence; Horrigan, Joseph P; Kasari, Connie; Lord, Cathy; Choi, Dennis; Sullivan, Katherine; Dawson, Geraldine
Social communication impairments are a core deficit in autism spectrum disorder. Social communication deficit is also an early indicator of autism spectrum disorder and a factor in long-term outcomes. Thus, this symptom domain represents a critical treatment target. Identifying reliable and valid outcome measures for social communication across a range of treatment approaches is essential. Autism Speaks engaged a panel of experts to evaluate the readiness of available measures of social communication for use as outcome measures in clinical trials. The panel held monthly conference calls and two face-to-face meetings over 14 months. Key criteria used to evaluate measures included the relevance to the clinical target, coverage of the symptom domain, and psychometric properties (validity and reliability, as well as evidence of sensitivity to change). In all, 38 measures were evaluated and 6 measures were considered appropriate for use, with some limitations. This report discusses the relative strengths and weaknesses of existing social communication measures for use in clinical trials and identifies specific areas in need of further development.
PMID: 25096930
ISSN: 1461-7005
CID: 1562122

Measuring repetitive behaviors as a treatment endpoint in youth with autism spectrum disorder

Scahill, Lawrence; Aman, Michael G; Lecavalier, Luc; Halladay, Alycia K; Bishop, Somer L; Bodfish, James W; Grondhuis, Sabrina; Jones, Nancy; Horrigan, Joseph P; Cook, Edwin H; Handen, Benjamin L; King, Bryan H; Pearson, Deborah A; McCracken, James T; Sullivan, Katherine Anne; Dawson, Geraldine
Restricted interests and repetitive behaviors vary widely in type, frequency, and intensity among children and adolescents with autism spectrum disorder. They can be stigmatizing and interfere with more constructive activities. Accordingly, restricted interests and repetitive behaviors may be a target of intervention. Several standardized instruments have been developed to assess restricted interests and repetitive behaviors in the autism spectrum disorder population, but the rigor of psychometric assessment is variable. This article evaluated the readiness of available measures for use as outcome measures in clinical trials. The Autism Speaks Foundation assembled a panel of experts to examine available instruments used to measure restricted interests and repetitive behaviors in youth with autism spectrum disorder. The panel held monthly conference calls and two face-to-face meetings over 14 months to develop and apply evaluative criteria for available instruments. Twenty-four instruments were evaluated and five were considered "appropriate with conditions" for use as outcome measures in clinical trials. Ideally, primary outcome measures should be relevant to the clinical target, be reliable and valid, and cover the symptom domain without being burdensome to subjects. The goal of the report was to promote consensus across funding agencies, pharmaceutical companies, and clinical investigators about advantages and disadvantages of existing outcome measures.
PMID: 24259748
ISSN: 1461-7005
CID: 1562102

Potential neural mechanisms underlying the effectiveness of early intervention for children with autism spectrum disorder

Sullivan, Katherine; Stone, Wendy L; Dawson, Geraldine
Although evidence supports the efficacy of early intervention for improving outcomes for children with autism spectrum disorder (ASD), the mechanisms underlying their effectiveness remain poorly understood. This paper reviews the research literature on the neural bases of the early core deficits in ASD and proposes three key features of early intervention related to the neural mechanisms that may contribute to its effectiveness in improving deficit areas. These features include (1) the early onset of intensive intervention which capitalizes on the experience-expectant plasticity of the immature brain, (2) the use of treatment strategies that address core deficits in social motivation through an emphasis on positive social engagement and arousal modulation, and (3) promotion of complex neural networks and connectivity through thematic, multi-sensory and multi-domain teaching approaches. Understanding the mechanisms of effective early intervention will enable us to identify common or foundational active ingredients for promoting optimal outcomes in children with ASD.
PMID: 25108609
ISSN: 1873-3379
CID: 1562112

Measuring anxiety as a treatment endpoint in youth with autism spectrum disorder

Lecavalier, Luc; Wood, Jeffrey J; Halladay, Alycia K; Jones, Nancy E; Aman, Michael G; Cook, Edwin H; Handen, Benjamin L; King, Bryan H; Pearson, Deborah A; Hallett, Victoria; Sullivan, Katherine Anne; Grondhuis, Sabrina; Bishop, Somer L; Horrigan, Joseph P; Dawson, Geraldine; Scahill, Lawrence
Despite the high rate of anxiety in individuals with autism spectrum disorder (ASD), measuring anxiety in ASD is fraught with uncertainty. This is due, in part, to incomplete consensus on the manifestations of anxiety in this population. Autism Speaks assembled a panel of experts to conduct a systematic review of available measures for anxiety in youth with ASD. To complete the review, the panel held monthly conference calls and two face-to-face meetings over a fourteen-month period. Thirty eight published studies were reviewed and ten assessment measures were examined: four were deemed appropriate for use in clinical trials, although with conditions; three were judged to be potentially appropriate, while three were considered not useful for clinical trials assessing anxiety. Despite recent advances, additional relevant, reliable and valid outcome measures are needed to evaluate treatments for anxiety in ASD.
PMID: 24158679
ISSN: 1573-3432
CID: 1562132

Nonverbal and verbal cognitive discrepancy profiles in autism spectrum disorders: influence of age and gender

Ankenman, Katy; Elgin, Jenna; Sullivan, Katherine; Vincent, Logan; Bernier, Raphael
Research suggests that discrepant cognitive abilities are more common in children with autism spectrum disorder (ASD) and may indicate an important ASD endophenotype. The current study examined the frequency of IQ discrepancy profiles (nonverbal IQ > verbal IQ [NVIQ > VIQ], verbal IQ > nonverbal IQ [VIQ > NVIQ], and no split) and the relationship of gender, age, and ASD symptomatology to IQ discrepancy profile in a large sample of children with ASD. The NVIQ > VIQ profile occurred at a higher frequency than expected, had more young males, and showed more autism symptoms than the other groups. Results suggest that the NVIQ > VIQ profile may be less likely to represent a subtype of ASD, but rather a common developmental pathway for children with ASD and other disorders.
PMID: 24450323
ISSN: 1944-7515
CID: 1562162

Parenting-related stress and psychological distress in mothers of toddlers with autism spectrum disorders

Estes, Annette; Olson, Erin; Sullivan, Katherine; Greenson, Jessica; Winter, Jamie; Dawson, Geraldine; Munson, Jeffrey
BACKGROUND: Parents of children with autism spectrum disorders (ASDs) are at risk for higher stress levels than parents of children with other developmental disabilities and typical development. Recent advances in early diagnosis have resulted in younger children being diagnosed with ASDs but factors associated with parent stress in this age group are not well understood. AIMS: The present study examined parenting-related stress and psychological distress in mothers of toddlers with ASD, developmental delay without ASD (DD), and typical development. The impact of child problem behavior and daily living skills on parenting-stress and psychological distress were further investigated. METHODS: Participants were part of a larger research study on early ASD intervention. RESULTS: Parent self-report of parenting-related stress and psychological distress was utilized. Parents of toddlers with ASD demonstrated increased parenting-related stress compared with parents of toddlers with DD and typical development. However, psychological distress did not differ significantly between the groups. Child behavior problems, but not daily living skills emerged as a significant predictor of parenting-related stress and psychological distress. This was true for both mothers of children with ASD and DD. CONCLUSIONS: These finding suggest that parents' abilities to manage and reduce behavior problems is a critical target for interventions for young children with ASD and DD in order to improve child functioning and decrease parenting-related stress.
PMID: 23146332
ISSN: 1872-7131
CID: 1562142

A novel method for assessing the development of speech motor function in toddlers with autism spectrum disorders

Sullivan, Katherine; Sharda, Megha; Greenson, Jessica; Dawson, Geraldine; Singh, Nandini C
There is increasing evidence to show that indicators other than socio-cognitive abilities might predict communicative function in Autism Spectrum Disorders (ASD). A potential area of research is the development of speech motor function in toddlers. Utilizing a novel measure called "articulatory features," we assess the abilities of toddlers to produce sounds at different timescales as a metric of their speech motor skills. In the current study, we examined (1) whether speech motor function differed between toddlers with ASD, developmental delay (DD), and typical development (TD); and (2) whether differences in speech motor function are correlated with standard measures of language in toddlers with ASD. Our results revealed significant differences between a subgroup of the ASD population with poor verbal skills, and the other groups, for the articulatory features associated with the shortest-timescale, namely place of articulation (POA), (p < 0.05). We also found significant correlations between articulatory features and language and motor ability as assessed by the Mullen and the Vineland scales for the ASD group. Our findings suggest that articulatory features may be an additional measure of speech motor function that could potentially be useful as an early risk indicator of ASD.
PMID: 23543066
ISSN: 1662-5145
CID: 1562152