Providing Continuity in Infant Mental Health Services for Medically Fragile Infants and Their Families.

Having a baby who is prenatally or postnatally diagnosed with a medical condition places considerable stress on the parents, infants, and their developing relationship. Infant mental health (IMH) services offer an opportunity to address the challenges and support the parent-infant relationship. The present study outlined a continuum of care IMH program embedded within various medical settings of a large metropolitan children's hospital. Applications of IMH principles within the fetal care center, neonatal intensive care unit, high risk infant follow-up clinic, and the patient's home are described. Descriptive data about families served across settings and a case study are provided in order to illustrate the implementation of this unique IMH intervention model.

Sensory Adaptations to Improve Physiological and Behavioral Distress During Dental Visits in Autistic Children: A Randomized Crossover Trial.

Importance: Autistic children have poorer oral health and greater oral care challenges, which are often associated with sensory overresponsivity, than neurotypical peers. It is important to identify innovative solutions enabling dentists to successfully perform standard clinic-based procedures for this population. Objective: To determine whether a sensory-adapted dental environment (SADE) reduces physiological and behavioral distress in autistic children undergoing dental cleanings, compared with a regular dental environment (RDE). Design, Setting, and Participants: This randomized crossover trial was conducted at a pediatric dentistry clinic in a large urban children's hospital between May 2016 and April 2022. Coders were blinded to study condition for physiological but not behavioral measurements. Autistic children aged 6 to 12 years were identified and invited to participate. Interested families were enrolled consecutively; after confirmation of autism diagnosis, children were randomized. Analysis for this per-protocol study were conducted from April to October 2022. Intervention: Each child underwent 1 RDE and 1 SADE dental cleaning, administered in randomized and counterbalanced order approximately 6 months apart. SADE included modified visual, auditory, and tactile stimuli. Main Outcomes and Measures: The primary outcome was physiological stress, assessed by electrodermal activity. The secondary outcome was behavioral distress measured from video recordings. Results: Among 452 families invited to participate, 220 children were enrolled, and 162 children (mean [SD] age, 9.16 [1.99] years; 136 [84.0%] male) with confirmed autism were randomized, with 83 children receiving RDE first and 80 children receiving SADE first. Most children (94 children [58.0%]) had moderate autism severity. Children had significantly lower physiological stress during dental care in SADE compared with RDE (mean difference in skin conductance level, -1.22 [95% CI, -2.17 to -0.27] µS), suggesting decreased sympathetic activity and increased relaxation during SADE dental care. No significant differences were found in nonspecific skin conductance responses (mean difference, -0.30 [95% CI, -0.86 to 0.25] per min). Video-coded frequency and duration of behavioral distress (but not questionnaire) measures were significantly lower in SADE vs RDE (Cohen d = -0.84 to -1.19). Physiological stress was associated with behavioral distress during the dental cleaning (eg, nonspecific skin conductance responses associated with the Frankl Scale: ß = -0.29; 95% CI, -0.39 to -0.19); age, IQ, and expressive communication moderated the intervention's success. No participants withdrew due to adverse effects. Conclusions and Relevance: In this randomized crossover trial of autistic children, using SADE was safe and efficacious in decreasing physiological and behavioral distress during dental care. This is important because enhancing oral care is critical for autistic children; this intervention may also be beneficial for populations beyond autism. Trial Registration: ClinicalTrials.gov Identifier: NCT02430051.

Clinical use and implementation of the diagnostic classification of mental health and developmental disorders of infancy and early childhood.

The Diagnostic Classification of Mental Health and Developmental Disorders of Infancy and Early Childhood (DC: 0-5) was developed to provide a framework for diagnosis of infants and young children, and a training curriculum supports implementation of the manual in clinical practice. This study surveyed 100 mental health clinicians (93% female and 53% Latinx/Hispanic) who had completed training in the DC: 0-5 classification system and worked with infants/young children and their families primarily in urban, public insurance-funded, community mental health settings in the United States. The survey explored their use of the diagnostic manual in clinical practice as well as supports and barriers to implementation. Survey results indicated a high level of adoption of the manual in clinical practice, although all five axes and the cultural formulation were used less often than the Axis I Clinical Disorders section. Barriers to implementation included systemic issues such as agency and billing requirements necessitating simultaneous use of other diagnostic manuals, lack of supports and expertise within their agency, and difficulty making time to fully utilize the manual. The findings suggest that policy and systems changes may be needed to enable clinicians to fully integrate the DC: 0-5 into their case conceptualizations.

La Clasificación de Diagnosis de Salud Mental y Trastornos del Desarrollo de la Infancia y la Temprana Niñez (DC: 0 - 5) fue desarrollada para proveer un marco de trabajo para la diagnosis de infantes y niños pequeños, y un currículo apoya la implementación del manual en la práctica clínica. Este estudio consultó a 100 profesionales clínicos de la salud mental (93% mujeres y 53% hispanos/latinx) quienes habían completado el entrenamiento en el sistema de clasificación DC: 0 - 5 y trabajado con infantes/niños pequeños y sus familias en escenarios comunitarios de salud mental urbanos y que recibían fondos públicos de seguros en Estados Unidos. La encuesta exploró el uso del manual de diagnóstico en la práctica clínica, así como también los apoyos y barreras a la implementación. Los resultados de la encuesta indicaron un alto nivel de adopción del manual en la práctica clínica, aunque todos los cinco ejes centrales y la formulación cultural se usaron menos a menudo que la sección del Eje Central I de los Trastornos Clínicos. Entre las barreras a la implementación se incluyen asuntos sistemáticos tales como los requisitos de la agencia y la forma de cobro, necesitando así el uso simultáneo de otros manuales de diagnóstico, la falta de apoyos y de conocimientos dentro de sus agencias, así como la dificultad de encontrar el tiempo para utilizar el manual al máximo. Los resultados sugieren que pudieran necesitarse cambios en la política y los sistemas para permitirles a los profesionales clínicos integrar completamente el DC: 0 - 5 dentro de sus conceptualizaciones de casos.

La classification diagnostique de la santé mentale et des troubles du développement de la petite enfance (DC: 0-5) a été développée afin d'offrir une structure pour le diagnostic des bébés et des petits enfants, et un curriculum de formation soutient la mise en place du manuel dans la pratique clinique. Cette étude a sondé 100 cliniciens de santé mentale (93% femmes et 53% Latinx/Hispaniques) ayant fini la formation pour le système de classification DC: 0 - 5 et travaillé avec des bébés/jeunes enfants et leurs familles principalement dans des contextes communautaires de santé mentale, urbains et financés par l'assurance publique aux Etats-Unis d'Amérique. Ce sondage a exploré leur utilisation du manuel diagnostique dans la pratique clinique ainsi que les soutiens et les barrières à la mise en place. Les résultats du sondage indiquent un niveau élevé d'adoption du manuel dans la clinique pratique, bien que tous les cinq axes et la formulation culturelle aient été moins souvent utilisés que la section Axes / Troubles Cliniques. Les barrières à la mise en place ont inclus des problèmes systémiques comme l'agence ou les exigences de facturation nécessitant une utilisation simultanée d'autres manuels diagnostiques, le manque de soutien et d'expertise au sein de leur propre agence, et la difficulté à prendre le temps d'utiliser le manuel à fond. Les résultats suggèrent que des changements de politique et de systèmes pourraient s'avérer nécessaires pour permettre aux cliniciens d'intégrer pleinement la DC: 0 - 5 dans leurs conceptualisations de cas.

Brief Report: Caregiver Confidence in Reporting Anxiety Symptoms in Children with Autism Spectrum Disorder.

Assessment of anxiety in children with autism spectrum disorder (ASD) most commonly includes parent questionnaires. However, due to the nature of the questions and verbal limitations often present in children with ASD, caregivers may have difficulty completing such measures. Caregivers of 144 children with ASD ages 6 to 12 completed the Child and Adolescent Symptom Inventory-4 ASD Anxiety Scale and rated their level of confidence in responding to each item. Results indicated that parents had a moderate to high level of confidence in rating their children's anxiety symptoms. Parent confidence was not influenced by their child's age, expressive language ability, or intellectual functioning, but was related to their child's anxiety symptom count and ASD severity.

Profile of Autism Spectrum Disorder in Tuberous Sclerosis Complex: Results from a Longitudinal, Prospective, Multisite Study.

OBJECTIVE: Tuberous sclerosis complex (TSC) is highly associated with autism spectrum disorder (ASD). Objectives of the study were to characterize autistic features in young children with TSC. METHODS: Participants included 138 children followed from ages 3 to 36 months with TSC from the Tuberous Sclerosis Complex Autism Center of Excellence Research Network (TACERN), a multicenter, prospective observational study aimed at understanding the underlying mechanisms of ASD in TSC. Developmental and autism-specific assessments were administered, and a clinical diagnosis of ASD was determined for all participants at 36 months. Further analyses were performed on 117 participants with valid autism assessments based on nonverbal mental age greater than 15 months. RESULTS: Prevalence of clinical diagnosis of ASD at 36 months was 25%. Nearly all autistic behaviors on the Autism Diagnostic Observation Schedule-2 (ADOS-2) and Autism Diagnostic Interview-Revised (ADI-R) were more prevalent in children diagnosed with ASD; however, autism-specific behaviors were also observed in children without ASD. Overall quality of social overtures, facial expressions, and abnormal repetitive interests and behaviors were characteristics most likely to distinguish children with ASD from those without an ASD diagnosis. Participants meeting ADOS-2 criteria but not a clinical ASD diagnosis exhibited intermediate developmental and ADOS-2 scores compared to individuals with and without ASD. INTERPRETATION: ASD is highly prevalent in TSC, and many additional individuals with TSC exhibit a broad range of subthreshold autistic behaviors. Our findings reveal a broader autism phenotype that can be identified in young children with TSC, which provides opportunity for early targeted treatments. ANN NEUROL 2021;90:874-886.

Infant-Family Mental Health in the NICU: A Mixed-Methods Study Exploring Referral Pathways and Family Engagement.

Parents and infants in the neonatal intensive care unit (NICU) are exposed to considerable stress, and infant-family mental health (IFMH) services foster emotional well-being in the context of the parent-infant relationship. This mixed-methods study examined the role of an IFMH program introduced in a level 4 NICU. The study included (1) retrospective medical record review of NICU patients who were referred to the IFMH program and (2) qualitative interviews with NICU nurse managers, neonatologists, and medical social workers to explore their understanding of the IFMH program, explore the referral pathways and factors that supported family engagement, and identify specific recommendations for program improvement. Of the 311 infant-parent dyads referred to the IFMH program, 62% had at least one session and Spanish-speaking families were more likely to engage. Of those families receiving services, about one-third had brief intervention, one-third had 4 to 10 sessions, and one-third had long-term services, including in-home after-discharge services. Qualitative interviews with health providers identified unique qualities of the IFMH program and why families were and were not referred to the program. Recommendations centered on adding a full-time IFMH mental health provider to the NICU and increasing communication and integration between the IFMH program and the medical team.

Policy and Practice Barriers to Early Identification of Autism Spectrum Disorder in the California Early Intervention System.

Autism spectrum disorder can be reliably diagnosed prior to age 2, and early, intensive intervention has been found to improve long-term outcomes. Nonetheless, most children with ASD do not receive a diagnosis until after age 3, with even later diagnoses for children from non-white ethnic groups. This study conducted telephone surveys with California Part C early intervention managers regarding policies and practices for early identification and intervention for ASD. Findings indicated that 85% of agencies conduct screening for ASD, but only 39% conduct ASD diagnostic assessments prior to age 3. Recommendations for policy changes to align Part C practices with best practice guidelines are provided.

Neurodevelopmental outcome of monochorionic twins with selective intrauterine growth restriction (SIUGR) type II: laser versus expectant management.

OBJECTIVE: To compare the neurodevelopmental outcome of monochorionic-diamniotic twins (MCDA) with type II selective intrauterine growth restriction (SIUGR-II) managed in utero either expectantly or with laser. MATERIALS AND METHODS: Postnatal neurodevelopmental assessment was conducted on the children of patients that had been antenatally diagnosed with SIUGR-II between 16 and 26 weeks gestational age (GA) and that had been randomly assigned to expectant management (EM) versus laser therapy (LT). The assessment was conducted by trained specialists using the Battelle Developmental Inventory (BDI-2). BDI-2 total and domain (adaptive, personal-social, communication, motor, and cognitive) composite scores for the appropriately grown (AGA) and growth-restricted (IUGR) twins were compared by treatment arm. RESULTS: Twenty patients diagnosed with SIUGR had undergone block randomization between two centers to either expectant management (EM) (6) or laser therapy (LT) (14). The mean (SD) GA at diagnosis was no different between the EM and LT groups [21.5 (2.0) versus 21.1 (2.8) weeks, p = .7414, respectively]. However, GA at delivery was significantly lower in the EM versus LT groups [28.3 (1.8) versus 33.4 (3.8) weeks, p = .0039]. At 6 months, all 20 AGA babies were alive, whereas only 3/6 (50%) of the IUGR babies in the EM group and 4/14 (29%) in the LT group were alive (p = .6126). One family in the EM group and two families in the LT group declined BDI-2 assessment. The mean (SD) age at BDI-2 assessment was no different between the EM and LT groups [75.6 (14.4) versus 70.7 (18.2) months, p = .5618, respectively]. For the AGA children, there were no significant differences in total BDI-2 scores for the EM versus LT [97.4 (10.4) versus 98.0 (19.6), p = .8741], nor in any of the domain composite scores. For the IUGR children, no statistically significant differences were detected in total BDI-2 scores between the EM and LT [72.0 (31.1) versus 92.8 (22.1), p = .643], nor in any of the domain composite scores. The comparison of standardized scores between the AGA and IUGR pairs was significantly different, but within the normal range. CONCLUSIONS: Neurodevelopmental outcomes for SIUGR-II MCDA twins were similarly favorable, whether managed expectantly or with laser treated. However, the significantly different GA at delivery (28.3 versus 33.4 weeks, p = .0039, expectant versus laser, respectively) may suggest improved outcomes in laser-treated patients in a larger cohort.

Factors Influencing Implementation of Evidence-Based Mental Health Interventions for Infants and Young Children.

Large-scale efforts have been made to adopt evidence-based practices (EBPs) for young children within community mental health settings. The current study investigated the implementation of Parent-Child Interaction Therapy and Child-Parent Psychotherapy using an online survey of 20 program managers representing 16 birth-to-five mental health agencies serving an ethnically diverse Medicaid population throughout a large urban county. Survey questions addressed intake and referral processes, training and supervision in EBPs, treatment fidelity, and patient outcomes/satisfaction. Results indicated that both clinical judgment and established decision-trees were used to select treatment approaches and that supervision, consultation, and fidelity monitoring were used to support fidelity to the models. Participants cited intensive EBP training processes, staff turnover, and patient attrition as barriers to sustainability. Implications regarding implementation of EBPs for infants and young children are discussed, including issues related to patient care, training and supervision, treatment fidelity, program sustainability, and barriers to system change.

The Complexity of Making a Diagnosis.

CASE: Carl is a 12-year-old boy midline, with neurologic malformation, ataxia, bilateral strabismus with presumed residual visual impairment after surgical repair, and intellectual disability. He was referred to developmental-behavioral pediatrics for evaluation of possible autism spectrum disorder (ASD).Carl had a benign prenatal course and was born via spontaneous vaginal delivery at term. Bilateral strabismus was noted at birth. Despite surgery to address strabismus, Carl continues to be unable to raise his eyes above midline, and his visual status, including visual acuity, depth perception, color perception, and visual fields, is unclear. A recent auditory brainstem response evaluation was consistent with normal hearing. Multiple variants of undetermined significance were reported on chromosomal microarray. Magnetic resonance imaging of the brain demonstrated multiple malformations in the brainstem and posterior fossa. Electroencephalogram was without evidence of seizure activity. There is no family history of genetic disorders, brain malformation, or learning/cognitive disability.Carl was not able to sit independently until 2 years of age and did not walk until 5 years. Now, he can walk short distances by himself but is often unsteady on his feet. He uses a wheelchair but does not propel himself despite a physical therapy assessment indicating that he has adequate strength to do so. Carl spoke his first word at 5 years, and his parents report that he currently uses approximately 50 words spontaneously and appropriately. His speech is difficult to understand because of articulation errors. He can identify colors and numbers but has not mastered concepts of size and comparison. Standard scores for the conceptual, social, and practical domains and the General Adaptive Composite were in the mid-50s on the Adaptive Behavior Assessment System-3, as reported by the parents.At home, Carl spends much of his time watching videos on his iPad in his bedroom. At school, he tends to separate himself from others on the playground after lunch. Parents believe this to be due to communication difficulties and mobility limitations. Parents report that when he likes another classmate or family member, he will stay in the same room as that individual but will not try to interact. Teachers report that when a well-liked classmate sits near Carl, he will smile and say the classmate's name. He will not attempt to initiate or participate in conversation. A picture exchange communication system was introduced at school because of difficulties understanding his speech. Attempts have also been made to train him to use a keyboard to communicate. Carl has demonstrated limited interest in using either system. He has several repetitive behaviors such as hand flapping, body rocking, and rubbing his nose with a specific spoon. Repetitive, nonpurposeful vocalizations are reported at home and at school. Carl requires assistance with toileting and bathing because of refusal to complete the tasks otherwise. It is common for Carl to cover his ears in response to hearing specific sounds such as fire alarms and emergency sirens.The Autism Diagnostic Observation Schedule, Second Edition, Module 1 was administered to assess for behaviors consistent with a diagnosis of ASD. Carl scored within the severe range of symptoms and was diagnosed with ASD. Recommendations were made for completion of a functional vision assessment and implementation of home- and school-based applied behavior analysis programs. In addition, further testing with an assessment developed for children with low language abilities was recommended to clarify his nonverbal cognitive abilities. What else would you consider when making recommendations for Carl's care?

Language predictors of autism spectrum disorder in young children with tuberous sclerosis complex.

BACKGROUND: Epilepsy has previously been implicated in the development of autism spectrum disorder (ASD) in the setting of tuberous sclerosis complex (TSC). However, the role of language in this relationship is unclear, and the specific relationship between ASD, epilepsy, and language development in this population has not been well-studied. OBJECTIVES: The objectives the study were to identify the role of early language in subsequent development of ASD, evaluate the impact of epilepsy as a covariate on language development, and evaluate the relationship between epilepsy, language development, and development of ASD. METHODS: This study included 154 children ages 3-36 months with TSC who were enrolled in the TSC Autism Center of Excellence Research Network (TACERN), a multicenter, prospective observational study to identify biomarkers of ASD. Developmental and autism-specific assessments were administered longitudinally. Appropriate variables from the Mullen Scales of Early Learning (MSEL), Vineland Adaptive Behavior Scales, 2nd Edition (VABS-II), and Preschool Language Scales, 5th Edition (PLS-5) were used to assess patients' language skills. At 36 months, clinical best estimate, which was based on clinical assessment and observation, was used to determine a diagnosis of ASD. RESULTS: By 12 months, all language variables on the MSEL, PLS-5, and VABS-II significantly predicted an ASD diagnosis at 36 months. Age at seizure onset was associated with language scores in that later seizure onset was associated with improved language scores on the MSEL, VABS-II, and PLS-5. Seizure onset prior to 6 months was associated with a diagnosis of ASD at 36 months. Higher seizure frequency negatively correlated with language scores at 12 months and beyond. Higher seizure frequency was also associated with an ASD diagnosis at 36 months. When looking at the relationship between epilepsy, language, and ASD diagnosis, by 18 months, language scores were more associated with a later ASD diagnosis at 36 months compared with age at seizure onset, which was a better predictor of later ASD diagnosis earlier in development. CONCLUSION: Analysis of language variables and epilepsy characteristics from 6 to 36 months and ASD diagnosis at 36 months revealed significant relationships between all three variables. While the direction of these relationships needs further research, epilepsy, language, and the development of ASD are integrally related in young children with TSC.

Child-Parent Psychotherapy with Infants Hospitalized in the Neonatal Intensive Care Unit.

Hospitalization in the Neonatal Intensive Care Unit (NICU) is a stressful and potentially traumatic experience for infants as well as their parents. The highly specialized medical environment can threaten the development of a nurturing and secure caregiving relationship and potentially derail an infant's development. Well-timed, dose-specific interventions that include an infant mental health approach can buffer the impact of medical traumatic stress and separations and support the attachment relationship. Many psychological interventions in the NICU setting focus on either the parent's mental health or the infant's neurodevelopmental functioning. An alternative approach is to implement a relationship-based, dyadic intervention model that focuses on the developing parent-infant relationship. Child-parent psychotherapy (CPP) is an evidence-based trauma-informed dyadic intervention model for infants and young children who have experienced a traumatic event. This article describes the adaptation of CPP for the NICU environment.

Impacting development in infants with tuberous sclerosis complex: Multidisciplinary research collaboration.

The Tuberous Sclerosis Complex Autism Center of Excellence Network (TACERN) is a 6-site collaborative conducting longitudinal research on infants with tuberous sclerosis complex (TSC), focused on identifying early biomarkers for autism spectrum disorder (ASD). A multidisciplinary research team that includes the specialties of psychology, neurology, pediatrics, medical genetics, and speech-language pathology, its members work together to conduct studies on neurological status, brain structure and function, neurodevelopmental phenotype, and behavioral challenges in this population. This article provides insights into the roles of the multidisciplinary multisite team and lessons learned from the collaboration, in terms of research as well as training of future researchers and clinicians. In addition, the authors detail the major findings to date, including those related to the identification and measurement of early symptoms of ASD, relationship between seizures and early development, and early biomarkers for epilepsy and developmental delay in infants and young children with TSC. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

The Importance of Sensory Processing in Mental Health: A Proposed Addition to the Research Domain Criteria (RDoC) and Suggestions for RDoC 2.0.

The time is ripe to integrate burgeoning evidence of the important role of sensory and motor functioning in mental health within the National Institute of Mental Health's [NIMH] Research Domain Criteria [RDoC] framework (National Institute of Mental Health, n.d.a), a multi-dimensional method of characterizing mental functioning in health and disease across all neurobiological levels of analysis ranging from genetic to behavioral. As the importance of motor processing in psychopathology has been recognized (Bernard and Mittal, 2015; Garvey and Cuthbert, 2017; National Institute of Mental Health, 2019), here we focus on sensory processing. First, we review the current design of the RDoC matrix, noting sensory features missing despite their prevalence in multiple mental illnesses. We identify two missing classes of sensory symptoms that we widely define as (1) sensory processing, including sensory sensitivity and active sensing, and (2) domains of perceptual signaling, including interoception and proprioception, which are currently absent or underdeveloped in the perception construct of the cognitive systems domain. Then, we describe the neurobiological basis of these psychological constructs and examine why these sensory features are important for understanding psychopathology. Where appropriate, we examine links between sensory processing and the domains currently included in the RDoC matrix. Throughout, we emphasize how the addition of these sensory features to the RDoC matrix is important for understanding a range of mental health disorders. We conclude with the suggestion that a separate sensation and perception domain can enhance the current RDoC framework, while discussing what we see as important principles and promising directions for the future development and use of the RDoC.

Child abuse and neglect re-report rates for young children with developmental delays.

The study objective was to examine the likelihood and magnitude of child abuse and neglect (CAN) re-reports for young children (0-71 months) with delays in cognitive, language, and adaptive development, compared to typically developing children. The National Survey of Child and Adolescent Well-Being (NSCAW II), a nationally representative and longitudinal survey, was used to examine CAN re-reports at two follow-up waves, 18- and 36-months post baseline assessments. Logistic regression models were employed to determine the correlation between number of developmental delays and a CAN re-report at waves 2 and 3. Results indicate that children with three or more domains of delays had odds 4.73 times higher than children without developmental delays of re-report to CPS at wave 2 but not at wave 3. In this study, children with multiple developmental delays have elevated rates of CAN re-reports when compared to typically developing children. Allocation of child welfare resources should include strategies for preventing maltreatment risk among children with developmental delays.

Language Barriers Impact Access to Services for Children with Autism Spectrum Disorders.

Racial and ethnic disparities in accessing health care have been described in children with autism spectrum disorder (ASD). In a retrospective chart review of 152 children with ASD, children of parents whose primary language was English were significantly more likely to have both social skills and communication goals within their individualized education plan (IEP) compared to children of parents whose primary language was not English. Additionally, children of primary English speakers received significantly more hours of direct services from their state disability program. After controlling for demographic covariates, findings suggest that language barriers may negatively affect parents' abilities to access health care services for their child with ASD. Acculturation factors must therefore be considered when analyzing disparities in autism.

Broad Developmental Screening Misses Young Children With Social-Emotional Needs.

Many pediatricians use a broad developmental screening test as part of well-child care, but do not specifically screen for behavioral and emotional disorders. Parents at 2 urban community agencies completed both the Ages and Stages Questionnaire (ASQ-3) and the Ages and Stages Questionnaire: Social Emotional (ASQ:SE) for 608 children, ages 2 to 60 months; 51.8% in Spanish. Less than half of the children with a positive screen on the ASQ:SE would have been identified as needing additional assessment or intervention if only the ASQ-3 had been administered. Younger children with positive ASQ:SE screens were significantly less likely to be referred for mental health services compared with older children. Physicians should consider screening all young children for social-emotional and behavioral needs, and referring those identified for infant and early childhood mental health services.

Utility of the Autism Observation Scale for Infants in Early Identification of Autism in Tuberous Sclerosis Complex.

BACKGROUND: Tuberous sclerosis complex (TSC) is a genetic disorder with high prevalence of associated autism spectrum disorder (ASD). Our primary objectives were to determine early predictors of autism risk to identify children with TSC in most need of early interventions. The Autism Observation Scale for Infants (AOSI) was evaluated as a measure of ASD-associated behaviors in infants with TSC at age 12 months and its ability to predict ASD at 24 months. METHODS: Children ages 0 to 36 months with TSC were enrolled in the TSC Autism Center of Excellence Research Network (TACERN), a multicenter, prospective observational study to identify biomarkers of ASD. The AOSI was administered at age 12 months and the Autism Diagnostic Observation Schedule-2 (ADOS-2) and Autism Diagnostic Interview-Revised (ADI-R) at 24 months. Developmental functioning was assessed using the Mullen Scales of Early Learning. Children were classified as ASD or non-ASD according to the ADOS-2. RESULTS: Analysis included 79 children who had been administered the AOSI at 12 months and ADOS-2 and ADI-R at 24 months. The ASD group had a mean AOSI total score at 12 months significantly higher than the non-ASD group (11.8 ± 7.4 vs 6.3 ± 4.7; P < 0.001). An AOSI total score cutoff of 13 provided a specificity of 0.89 to detect ASD with the ADOS-2. AOSI total score at 12 months was similarly associated with exceeding cutoff scores on the ADI-R. CONCLUSIONS: The AOSI is a useful clinical tool in determining which infants with TSC are at increased risk for developing ASD.

Evolving Definitions of Autism and Impact on Eligibility for Developmental Disability Services: California Case Example.

When establishing eligibility for developmental disability (DD) services, definitions of specific diagnostic conditions, such as autism, impact policy. Under the Medicaid home and community-based waiver program, states have discretion in determining specific program or service eligibility criteria, the nature of supports to be provided, and the number of individuals to be served. Individuals with DD, their families, and advocates have pushed to expand eligibility and improve the quality of services and supports received. This article uses a California legal case to explore the impact on individuals seeking eligibility for DD services when states rely on evolving diagnostic criteria for autism spectrum disorder. Recommendations are made for a more equitable and consistent approach to disability eligibility determination.

Developmental Screening and Referrals: Assessing the Influence of Provider Specialty, Training, and Interagency Communication.

Previous studies have shown that different provider approaches, amount of familiarity with the referral and screening process, and level of interagency communication can increase or decrease the likelihood of caregivers completing a recommended referral to early intervention (EI). We surveyed 60 family practitioners and pediatricians at 2 primary care clinics to assess these factors. Pediatricians were more likely than family practitioners to report using, evaluating, and discussing the results of developmental screens. Providers with more experience and recent training expressed more confidence in their ability to describe the EI system to families. Most providers expressed a lack of confidence in their own agency to complete referrals or EI to provide follow-up. The knowledge gaps and communication problems identified in this study could serve as a basis for future interventional work.