Diagnostic stability in young children at risk for autism spectrum disorder: a baby siblings research consortium study

Ozonoff, Sally J; Young, Gregory S.; Landa, Rebecca; Brian, Jessica; Bryson, Susan E.; Charman, Tony; Chawarska, Katarzyna; Macari, Suzanne; Messinger, Daniel S.; Stone, Wendy L.; Zwaigenbaum, Lonnie; Iosif, Ana‐Maria

doi:10.1111/jcpp.12421

Cited by 302 publications

(281 citation statements)

References 32 publications

(53 reference statements)

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“…These sibling studies further illustrate the heightened stress placed on families raising a child with IDD, as well as the importance of studying family outcomes when more than one child may exhibit clinically elevated problem behaviors. Notably, there are many infant sibling studies in the field of ASD underway, but their focus is on early aspects of diagnosis [e.g., [55][56][57]. On the other hand, many studies indicate a lack of negative impact of a child with IDD on the psychological well-being of his or her siblings, although this literature is fraught with methodological difficulties [58].…”

Section: Impact Of Child Characteristicsmentioning

confidence: 98%

Impact of Youth with Intellectual and Developmental Disabilities on Families: Balancing Perspectives

Bolourian

Blacher

2016

Curr Dev Disord Rep

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The study of the impact of children or youth with intellectual and developmental disabilities on their families has grown increasingly complex. This is due, in part, to the multiple perspectives represented in research (e.g., mothers, fathers, siblings) and to the myriad of outcomes examined (e.g., negative vs. positive impact on families). Basic tenets set forth include encompassing theoretical models that can be used to integrate family research on impact, an evaluative discussion of the importance of child problem behaviors, and family socioeconomic status as vital to the discussion of family stress. Parenting behaviors that influence impact are also identified, with attention to important moderators of family outcomes that further elucidate processes over and above main effects research. The article concludes with a discussion of promising directions that may alter the impact of youth with intellectual and developmental disabilities on the family. Theoretical FrameworkOver the past few decades, research on families with children and youth with intellectual and developmental disabilities (IDD) has expanded, and new directions of focus have appeared. Greater emphasis has been placed on studying the whole family, rather than merely the child with a disability. Family system models holistically consider the individual with a disability, the parents/caregivers, as well as the interactional processes that exist (e.g., marital adjustment, parent-child relationships, sibling relationships) and the subsystems that affect them [1-4]. Bronfenbrenner's framework [5] has been considered a theoretical model that transformed the way many researchers approach the study of human development. He conceptualized the person and the family as the center focus, bounded by interrelated layers or systems. These systems are defined by interactional contexts, such as school, work, and overall social structure. Through this lens, one must assess the broader family context and the environment in which members are involved in order to understand the child's development. Although this emphasis was embodied in the seminal article by Crnic, Friedrich, and Greenberg [6], it remains relevant today and can help to integrate research on the multiple biological and environmental pathways that are reflected in the impact of a child with disability on the family [7,8].This paper utilizes the term Bintellectual and developmental disabilities^because it incorporates individuals with an IQ in the intellectual disability (ID) range as well as other conditions, notably autism, whose intelligence may or may not be in the ID range but who continue to struggle developmentally across adaptive domains. Throughout, we make no distinction unless there is a disability-specific point to be made.

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Section: Impact Of Child Characteristicsmentioning

confidence: 98%

Impact of Youth with Intellectual and Developmental Disabilities on Families: Balancing Perspectives

Bolourian

Blacher

2016

Curr Dev Disord Rep

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“…Clearly the possibility that any individual with an exceptional talent in realistic depiction would also be given a modern diagnosis of autism would need to be researched, but is likely to be reasonably high, even taking into account the low percentage of individuals with autism compared to the general population (figure 8)3. Naturally it is important to be cautious and to take into account the heterogeneity of genetic causes of autism (Rosti et al, 2014), the changes in autism diagnostic criteria over time (Volkmar & McPartland, 2014), lack of stability of individual diagnosis across time (Woolfenden et al, 2012;Ozonoff et al, 2015) which will all will affect interpretation of skill prevalence when comparing different population groups.…”

Section: The Relationship Between Local Processing Bias and Autismmentioning

confidence: 99%

How Do We Explain ‛Autistic Traits’ in European Upper Palaeolithic Art?

2018

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Traits in Upper Palaeolithic art which are also seen in the work of talented artists with autism, including most obviously an exceptional realism, remain to be explained. However any association between the famously evocative animal depictions created in the European Upper Palaeolithic and what is commonly seen as a 'disorder' has always been contentious. Debate over these similarities has been heated, with explanations ranging from famous works of Upper Palaeolithic art having been created by individuals with autism spectrum conditions, to being influenced by such individuals, to being a product of the use of psychotropic drugs. Here we argue that 'autistic traits' in art, such as extreme realism, have been created by individuals with a cognitive extreme of local processing bias, or detail focus. The significance of local processing bias, which is found both as a feature of autism spectrum conditions and in artists with exceptional talent at realistic depiction who aren't autistic, has implications for our understanding of Upper Palaeolithic society in general, as well as of the roles played by individuals with autism spectrum conditions.

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“…Onset and course is also quite varied; symptoms may appear during the first year of life (Ozonoff et al, 2010;Zwaigenbaum et al, 2005) or as late as the third year (Ozonoff et al, 2015;Rogers, 2009); some children show regression in language and/or social attainments in the 904 D. Fein and M. Helt second year (Hansen et al, 2008). A minority of children will lose their diagnosis (Anderson, Liang, & Lord, 2014;Fein et al, 2013;Helt et al, 2008), as will a higher proportion of children whose autism was due to environmental deprivation such as congenital blindness (Hobson & Lee, 2010;Hobson, 2014;Jure, Pogonza, & Rapin, 2016) or severe neglect .…”

Section: Phenotypic Heterogeneitymentioning

confidence: 99%

Facilitating Autism Research

Fein

Helt

2017

J Int Neuropsychol Soc

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Early autism research focused on behavior and cognition. In recent decades, the pace of research has accelerated, and advances in imaging and genetics have allowed the accumulation of biological data. Nevertheless, a coherent picture of the syndrome at either phenotypic or biological level has not emerged. We see two fundamental obstacles to progress in basic understanding of autism. First, the two defining features (impairment in social interactions and communication, and restricted, repetitive behaviors and interests) are historically seen as integrally related. Others hold that these two major traits are fractionable and must be studied independently, casting doubt on autism as a coherent syndrome. Second, despite much recent research on brain structure and function, environmental factors, and genetics/genomics, findings on the biological level have not generally aligned well with those on the phenotypic level. In the first two sections, we explore these challenges, and in the third section, we review approaches that may facilitate progress, such as (1) including in studies all individuals defined by social impairment without regard to repetitive behaviors, (2) forming narrowly defined subtypes by thorough characterization on specific features, both diagnostic and non-diagnostic, (3) focusing on characteristics that may be relatively robust to environmental influence, (4) studying children as early as possible, minimizing environmental influence, and including longitudinal course as an important part of the phenotype, (5) subtyping by environmental risk factors, (6) distinguishing between what participants can do and what they typically do, and (7) aggregating large data sets across sites. (JINS, 2017, 23, 903-915)

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Diagnostic stability in young children at risk for autism spectrum disorder: a baby siblings research consortium study

Cited by 302 publications

References 32 publications

Impact of Youth with Intellectual and Developmental Disabilities on Families: Balancing Perspectives

Impact of Youth with Intellectual and Developmental Disabilities on Families: Balancing Perspectives

How Do We Explain ‛Autistic Traits’ in European Upper Palaeolithic Art?

Facilitating Autism Research

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