Future Directions for Research in Autism Spectrum Disorders

This article suggests future directions for research aimed at improved understanding of the etiology and pathophysiology of autism spectrum disorder (ASD) as well as pharmacologic and psychosocial interventions for ASD across the lifespan. The past few years have witnessed unprecedented transformations in the understanding of ASD neurobiology, genetics, early identification, and early intervention. However, recent increases in ASD prevalence estimates highlight the urgent need for continued efforts to translate novel ASD discoveries into effective interventions for all individuals with ASD. In this article we highlight promising areas for ongoing and new research expected to quicken the pace of scientific discovery and ultimately the translation of research findings into accessible and empirically supported interventions for those with ASD. We highlight emerging research in the following domains as particularly promising and pressing: (1) preclinical models; (2) experimental therapeutics; (3) early identification and intervention; (4) psychiatric comorbidities and the Research Domain Criteria (RDoC) initiative; (5) ecological momentary assessment; (6) neurotechnologies; and (7) the needs of adults with ASD. Increased research emphasis in these areas has the potential to hasten the translation of knowledge on the etiological mechanisms of ASD to psychosocial and biological interventions to reduce the burden of ASD on affected individuals and their families

Rates of Co-occurring Psychiatric Disorders in Autism Spectrum Disorder Using the Mini International Neuropsychiatric Interview

Individuals with autism spectrum disorder (ASD) often meet criteria for at least one additional psychiatric disorder. The present study evaluated the utility of the Mini International Neuropsychiatric Interview (MINI) in assessing co-occurring psychiatric disorders in children, adolescents, and young adults with ASD. Ninety-one percent of children/adolescents and thirty-one percent of young adults were diagnosed with one or more co-occurring diagnoses using the MINI. MINI diagnostic rates were comparable to those found in the literature on children/adolescents with ASD; however, in young adults, MINI diagnostic rates were lower relative to rates found in the literature on young adults with ASD. Implications for treatment, transitioning to adulthood, and the need for instruments developed specifically to diagnose co-occurring disorders in ASD are discussed

The autism inpatient collection: Methods and preliminary sample description

© 2015 Siegel et al. Background: Individuals severely affected by autism spectrum disorder (ASD), including those with intellectual disability, expressive language impairment, and/or self-injurious behavior (SIB), are underrepresented in the ASD literature and extant collections of phenotypic and biological data. An understanding of ASD's etiology and subtypes can only be as complete as the studied samples are representative. Methods: The Autism Inpatient Collection (AIC) is a multi-site study enrolling children and adolescents with ASD aged 4-20 years admitted to six specialized inpatient psychiatry units. Enrollment began March, 2014, and continues at a rate of over 400 children annually. Measures characterizing adaptive and cognitive functioning, communication, externalizing behaviors, emotion regulation, psychiatric co-morbidity, self-injurious behavior, parent stress, and parent self-efficacy are collected. ASD diagnosis is confirmed by the Autism Diagnostic Observation Schedule - 2 (ADOS-2) and extensive inpatient observation. Biological samples from probands and their biological parents are banked and processed for DNA extraction and creation of lymphoblastoid cell lines. Results: Sixty-one percent of eligible subjects were enrolled. The first 147 subjects were an average of 12.6 years old (SD 3.42, range 4-20); 26.5 % female; 74.8 % Caucasian, and 81.6 % non-Hispanic/non-Latino. Mean non-verbal intelligence quotient IQ = 70.9 (SD 29.16, range 30-137) and mean adaptive behavior composite score = 55.6 (SD 12.9, range 27-96). A majority of subjects (52.4 %) were non- or minimally verbal. The average Aberrant Behavior Checklist - Irritability Subscale score was 28.6, well above the typical threshold for clinically concerning externalizing behaviors, and 26.5 % of the sample engaged in SIB. Females had more frequent and severe SIB than males. Conclusions: Preliminary data indicate that the AIC has a rich representation of the portion of the autism spectrum that is understudied and underrepresented in extant data collections. More than half of the sample is non- or minimally verbal, over 40 % have intellectual disability, and over one quarter exhibit SIB. The AIC is a substantial new resource for study of the full autism spectrum, which will augment existing data on higher-functioning cohorts and facilitate the identification of genetic subtypes and novel treatment targets. The AIC investigators welcome collaborations with other investigators, and access to the AIC phenotypic data and biosamples may be requested through the Simons Foundation (www.sfari.org)

Problem behaviors in autism spectrum disorder: association with verbal ability and adapting/coping skills.

Data from the Autism Inpatient Collection was used to examine the relationship between problem behaviors and verbal ability, which have generally, though not universally, been highly associated. In a comparison of 169 minimally-verbal and 177 fluently-verbal 4 to 20-year-old psychiatric inpatients with ASD, the severity of self-injurious behavior, stereotyped behavior, and irritability (including aggression and tantrums) did not significantly differ, when controlling for age and NVIQ. Verbal ability was not strongly related to the severity of problem behaviors. However, lower adapting/coping scores were significantly associated with increasing severity of each type of problem behavior, even when accounting for verbal ability. Interventions to develop adapting/coping mechanisms may be important for mitigation of problem behaviors across the spectrum of individuals with ASD

The emotion dysregulation inventory: Psychometric properties and item response theory calibration in an autism spectrum disorder sample.

Individuals with autism spectrum disorder (ASD) often present with prominent emotion dysregulation that requires treatment but can be difficult to measure. The Emotion Dysregulation Inventory (EDI) was created using methods developed by the Patient-Reported Outcomes Measurement Information System (PROMIS LAY SUMMARY: This paper describes a new measure of poor emotional control called the Emotion Dysregulation Inventory (EDI). Caregivers of 1,755 youth with ASD completed candidate items, and advanced statistical techniques were applied to identify the best final items. The EDI is unique because it captures common emotional problems in ASD and is appropriate for both nonverbal and verbal youth. It is an efficient and sensitive measure for use in clinical assessments, monitoring, and research with youth with ASD

AUT703090_Lay_Abstract – Supplemental material for The combined impact of social support and perceived stress on quality of life in adults with autism spectrum disorder and without intellectual disability

<p> Supplemental material, AUT703090_Lay_Abstract for The combined impact of social support and perceived stress on quality of life in adults with autism spectrum disorder and without intellectual disability by Lauren Bishop-Fitzpatrick, Carla A Mazefsky and Shaun M Eack in Autism </p

A Comparative Study of Suicidality and Its Association with Emotion Regulation Impairment in Large ASD and US Census-Matched Samples.

Evidence suggests increased rates of suicidality in autism spectrum disorder (ASD), but the research has rarely used comparison samples and the role of emotion dysregulation has not been considered. We compared the prevalence of parent-reported suicidality ideation and considered the role of emotion dysregulation in 330 psychiatric inpatient youth with ASD, 1169 community youth with ASD surveyed online, and 1000 youth representative of the US census. The prevalence of suicidal ideation was three and five times higher in the community and inpatient ASD samples, respectively, compared to the general US sample. In the ASD groups, greater emotion dysregulation was associated with suicidal ideation. Implications include consideration of emotion regulation as a potential mechanism and treatment target for suicidality in ASD

A Comparative Study of Suicidality and Its Association with Emotion Regulation Impairment in Large ASD and US Census-Matched Samples.

Evidence suggests increased rates of suicidality in autism spectrum disorder (ASD), but the research has rarely used comparison samples and the role of emotion dysregulation has not been considered. We compared the prevalence of parent-reported suicidality ideation and considered the role of emotion dysregulation in 330 psychiatric inpatient youth with ASD, 1169 community youth with ASD surveyed online, and 1000 youth representative of the US census. The prevalence of suicidal ideation was three and five times higher in the community and inpatient ASD samples, respectively, compared to the general US sample. In the ASD groups, greater emotion dysregulation was associated with suicidal ideation. Implications include consideration of emotion regulation as a potential mechanism and treatment target for suicidality in ASD

Emotion Dysregulation is Substantially Elevated in Autism Compared to the General Population: Impact on Psychiatric Services

Emerging evidence suggests that emotion regulation (ER) impairment in those with ASD is associated with poor mental health. This study used the Emotion Dysregulation Inventory, a new norm-referenced ER measure with clinical cut-offs, developed and validated in ASD and non-ASD samples, to establish rates of ER impairment and understand its association with psychiatric service use in ASD. Parents of 6-17 year olds in three well-characterized samples (nationally representative US = 1,000; community ASD = 1,169; inpatient ASD = 567) completed a battery of questionnaires about their child. The prevalence of ER impairment was significantly higher in the ASD groups compared to the nationally representative sample and highest in the psychiatric Inpatient ASD group. The community ASD and inpatient ASD samples were four and seven times more likely, respectively, to exceed clinical cutoffs for emotional reactivity than the general US sample. Similarly, history of psychiatric hospitalization, recent emergency services use (police contact, emergency room visits, or in-home crisis evaluations for emotional or behavioral concerns in the past 2 months), and psychotropic medication prescriptions were significantly higher in the ASD groups. ER impairment was significantly associated with all forms of psychiatric service use, after controlling for demographics (age, sex, race), co-occurring intellectual disability, and ADHD symptoms. This is the first large-scale study to document substantially higher rates of ER impairment in youth with ASD compared to the general population. The importance of ER impairment is underscored by its association with higher utilization of inpatient, emergency, and medication services in ASD, after accounting for demographics and ADHD-related symptoms