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This paper reports the results of a study of felt and enacted stigma among a sample of parents of children with high functioning autism. The results indicate that a majority of the parents experienced both types of stigma, but that mothers were more likely to do so than fathers. This was especially true in the case of enacted stigma, where a majority of mothers, but only a minority of fathers, encountered avoidance, hostile staring and rude comments from others. The child's type of autistic symptoms was also related to the stigmatisation of their parents, with parents of aggressive children more likely to experience stigma than the parents of passive children. The study also found that the distinction between felt and enacted stigma was more distinct analytically than it was in practice, as many parents tended to conflate the different types of stigma. The results of the study are considered in the context of the changing conceptualisations of, and treatments for, high functioning autism and their implications for the stigmatisation of parents.

This paper reports the findings of a qualitative study of courtesy stigma among 32 parents of autistic children. The results indicate that autism has uniquely stigmatising aspects because of the extremely disruptive nature of autistic symptoms, the normal physical appearance of autistic children, and the lack of public knowledge and understanding regarding the nature of autism. Most parents perceived themselves to be stigmatised by their child's disorder. There was a strong tendency for mothers to feel more stigmatised than fathers. Parents with more severely disabled children and children who were under the age of twelve were also somewhat more likely to perceive themselves to be stigmatised.

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Background Although coping with autism has been examined in a number of papers, virtually no research exists on how families cope over time. This paper reports the results of a longitudinal study of parents coping with autism over a period of approximately a decade. Methods The research method for the study was based on ethnographic methods that emphasized indepth interviews and participant observation. The sample for this study consisted of  parents (  mothers and nine fathers) of children with autism. The instrument for the interviews consisted of questions concerning: the child's medical history and referral experience, the child's present symptomatology, the effects of the child's problems on the parent's well-being, the effects of autism on the family's social life, parental coping strategies, illness conceptualization and the parents' expectations for the future. Results and conclusions Coping strategies changed from the time of the initial study, as fewer parents coped through reliance on service providers, family support, social withdrawal and individualism and relatively more parents coped through their religious faith and other emotion-focused strategies. The results tentatively support previous research on coping that indicates that aging is linked to the use of more emotion-focused coping strategies.

BackgroundDevelopmental disabilities have diverse genetic causes that must be identified to facilitate precise diagnoses. We describe genomic data from 371 affected individuals, 309 of which were sequenced as proband-parent trios.MethodsWhole-exome sequences (WES) were generated for 365 individuals (127 affected) and whole-genome sequences (WGS) were generated for 612 individuals (244 affected).ResultsPathogenic or likely pathogenic variants were found in 100 individuals (27%), with variants of uncertain significance in an additional 42 (11.3%). We found that a family history of neurological disease, especially the presence of an affected first-degree relative, reduces the pathogenic/likely pathogenic variant identification rate, reflecting both the disease relevance and ease of interpretation of de novo variants. We also found that improvements to genetic knowledge facilitated interpretation changes in many cases. Through systematic reanalyses, we have thus far reclassified 15 variants, with 11.3% of families who initially were found to harbor a VUS and 4.7% of families with a negative result eventually found to harbor a pathogenic or likely pathogenic variant. To further such progress, the data described here are being shared through ClinVar, GeneMatcher, and dbGaP.ConclusionsOur data strongly support the value of large-scale sequencing, especially WGS within proband-parent trios, as both an effective first-choice diagnostic tool and means to advance clinical and research progress related to pediatric neurological disease.Electronic supplementary materialThe online version of this article (doi:10.1186/s13073-017-0433-1) contains supplementary material, which is available to authorized users.

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Based on fieldwork conducted at the outset of the 2008 economic downturn, this paper examines the experiences of a group of unemployed managers and professionals in their fifties. Following a review of existing literature, the authors use a narrative methodology to explore how these people incorporate the experience of job loss into their selfimages and identities. They identify certain core similarities in the experiences of unemployed professionals and then discern three narrative strategies through which unemployed professionals tried to make sense of their dismissal and sustain their sense of selfhood. The term 'narrative coping' is proposed as a way of describing each unemployed professional's struggle to construct a story that offers both meaning and consolation. The study reveals that individuals expressing the most profound despair (those for whom job loss was the 'end of the line') were those whose stories had achieved 'closure'. By contrast, most of those who maintained more openended narratives, were better able to contain their emotions, either by holding on to the belief that unemployment was a temporary career aberration or by abandoning the idea that life is the same as career and by moving on to a new stage of experimentation and bricolage akin to an identity moratorium.