Toward specifying Pervasive Developmental Disorder - Not Otherwise Specified

Pervasive developmental disorder-not otherwise specified (PDD-NOS) is the most common and least satisfactory of the PDD diagnoses. It is not formally operationalized, which limits its reliability and has hampered attempts to assess its validity. We aimed, first, to improve the reliability and replicability of PDD-NOS by operationalizing its DSM-IV-TR description and, second, to test its validity through comparison with autistic disorder (AD) and Asperger's disorder (AsD). In a sample of 256 young people (mean age = 9.1 years) we used Developmental, Diagnostic and Dimensional (3Di) algorithmic analysis to classify DSM-IV-TR AD (n = 97), AsD (n = 93) and PDD-NOS (n = 66). Groups were compared on independent measures of core PDD symptomatology, associated autistic features, and intelligence. Contrary to the assumption that PDD-NOS is heterogeneous, almost all (97%) of those with PDD-NOS had one distinct symptom pattern, namely impairments in social reciprocity and communication, without significant repetitive and stereotyped behaviors (RSB). Compared to AD and AsD, they had comparably severe but more circumscribed social communication difficulties, with fewer non-social features of autism, such as sensory, feeding and visuo-spatial problems. These individuals appear to have a distinct variant of autism that does not merely sit at the less severe end of the same continuum of symptoms. The current draft guidelines for DSM-V, which mandate the presence of RSBs for any PDD diagnosis, would exclude such people from the autistic spectrum. Autism Res 2011, 4: 121-131. (C) 2011 International Society for Autism Research, Wiley Periodicals, Inc

Sex differences in predictors and outcomes of camouflaging: Comparing diagnosed autistic, high autistic trait and low autistic trait young adults

LAY ABSTRACT: Many autistic people use strategies that help them adapt in social situations and hide behaviours that may seem different to non-autistic individuals - this is called camouflaging. Camouflaging may help autistic people fit in socially; however, it might also lead to poorer well-being. It has been suggested that autistic females camouflage more than autistic males. This article explored differences between males and females who have an autism diagnosis, have characteristics of autism but no diagnosis and those with few autistic characteristics. It is important to include these groups as camouflaging may make it more difficult to get an autism diagnosis and therefore make it less likely a person will receive support. We found that autistic women camouflaged more than all other groups. The group with few autistic characteristics (males and females) camouflaged the least. Loneliness was found to be a possible reason for camouflaging for the diagnosed autistic group only. In terms of outcomes related to camouflaging, it was found that those who camouflaged most had a lower quality of life; this was true of all groups. This tells us that there may be different reasons to camouflage, and different outcomes related to camouflaging for those with many characteristics of autism (including those with a diagnosis), and those with few. It is important that clinicians, teachers, parents and other stakeholders are aware of the negative outcomes associated with camouflaging so that more support can be provided for those who need it

“I want to fit in… but I don’t want to change myself fundamentally”:A qualitative exploration of the relationship between masking and mental health for autistic teenagers

Background: Previous research has identified an association between masking and mental health for autistic people. However, the direction of causality and mechanisms involved in this relationship are not well understood. This qualitative study aimed to investigate autistic teenagers’ experiences of masking, mental health and how the two develop and interact. / Methods: Twenty autistic teenagers took part in a semi-structured interview. The interviews were analysed using Reflexive Thematic Analysis. / Results: From the analysis, one theme was identified to conceptualise masking as described by participants. Five more inter-related themes were identified, each involved both in the relationship between masking and mental health and conversely in the relationship between authenticity and mental health. Participants described how masking and mental health both influence each other, and both are influenced by social and environmental factors. / Conclusions: The findings are consistent with previous research indicating that masking is associated with mental health difficulties. Our analysis presents a broader conceptualisation of masking than previously defined in the literature, placing social oppression of autistic people at the heart of the relationship between masking and mental health. The findings have implications for diagnostic services, post-diagnostic support and therapeutic interventions, highlighting the need to challenge deficit-based narratives of autism

Mental health and social difficulties of late-diagnosed autistic children, across childhood and adolescence

BACKGROUND: Autism can be diagnosed from 2 years of age, although most autistic people receive their diagnosis later than this after they have started education. Research is required to understand why some autistic children are diagnosed late, and the level and nature of unmet need prior to diagnosis for late-diagnosed children. METHODS: We examined trajectories of emotional, behavioural and social difficulties (EBSDs) across childhood and adolescence, comparing 'earlier-diagnosed' (diagnosed 7 years or younger) with 'late-diagnosed' (diagnosed between 8 and 14 years) autistic children. Data were from the Millennium Cohort Study, a population-based UK birth cohort. EBSDs were measured using the parent-report Strengths and Difficulties Questionnaire, at 3, 5, 7, 11 and 14 years. We used Growth Curve Modelling to investigate levels and rates of change in these difficulties, and to compare earlier- (n = 146) and late-diagnosed (n = 284) autistic children. RESULTS: Aged 5, earlier-diagnosed autistic children had more emotional (i.e., internalising), conduct, hyperactivity and social difficulties; although clinical difficulties in these areas were nevertheless common in late-diagnosed children. There was a faster annual increase in scores for all domains for late-diagnosed children, and by age 14 years, they had higher levels of EBSDs. These results persisted when we ran adjusted models, to account for the late-diagnosed group having higher rates of late-diagnosed attention deficit/hyperactivity disorder, higher IQ, a higher proportion of females and older and more educated mothers. CONCLUSIONS: Emotional, behavioural and social difficulties are associated with, and may influence, the timing of autism diagnosis. Late-diagnosed autistic children often have high levels of mental health and social difficulties prior to their autism diagnosis, and tend to develop even more severe problems as they enter adolescence

Sex differences in conduct and emotional outcomes for young people with hyperactive/inattentive traits and social communication difficulties between 9 and 16 years of age: a growth curve analysis

BACKGROUND: The purpose of this paper is to identify the trajectory of conduct and emotional problems for young people within the general population at four time points (between 9 years 7 months and 16 years 6 months), investigate their relationship with hyperactive/inattentive traits and explore the moderating effect of autistic social traits (ASTs). METHODS: Data from 9305 individuals involved in The Avon Longitudinal Study of Parents and Children (ALSPAC) study were included. Conduct and emotional problems and hyperactive/inattentive traits were measured by the Strengths and Difficulties Questionnaire. ASTs were assessed using the Social Communication Disorder Checklist. Individual trajectories for conduct and emotional problems were identified via growth curve modelling. Hyperactive/inattentive traits were included within the growth curve model as a time-varying covariate to determine their effect on these outcomes. Finally, participants were split into two groups (below and above clinical threshold ASTs Groups) and multi-group invariance testing was conducted on the data to identify the moderating effect of ASTs on the relationship between hyperactive/inattentive traits and outcomes (i.e. conduct and emotional problems). RESULTS: Hyperactive/inattentive traits were associated with higher rates of conduct and emotional problems for both boys and girls. The presence of ASTs moderated these relationships for boys, but not for girls, by increasing the risk of boys with hyperactive/inattentive traits developing greater conduct and emotional problems. CONCLUSIONS: These findings underscore the importance of identifying hyperactive/inattentive traits and ASTs in young people and addressing the increased risk of conduct and emotional problems. Research and clinical implications are explored

Short report: Evaluation of wider community support for a neurodiversity teaching programme designed using participatory methods

Children with diagnoses such as autism, attention-deficit/hyperactivity disorder (ADHD), dyslexia and so on often experience bullying at school. This group can be described as neurodivergent, meaning they think and process information differently from most people. Previous research suggests that increasing people's knowledge can be an effective way to reduce stigma and bullying. Therefore, we decided to create a primary school resource to teach about neurodiversity - the concept that all humans vary in how our brains work. Working with educators, our research team - which included neurodivergent people - developed plans for a teaching programme called Learning About Neurodiversity at School (LEANS). Next, we wanted to know whether these plans, developed by our small neurodiverse team, would be endorsed by the wider community. To find out, we conducted an online feedback survey about our plans for the resource. We analysed feedback from 111 people who participated. Most of them identified as neurodivergent (70%) and reported being familiar with neurodiversity (98%), meaning they could provide an informed opinion on our plans. Over 90% of people expressed support for the planned programme content described in the survey, and 73% of them approved our intended definition of the resource's core concept, neurodiversity. From these results, we concluded that there was a high level of support for the planned LEANS programme content across those from the wider community who completed the survey. Consequently, we continued developing the LEANS programme in line with the initial plans from our neurodiverse team. The completed resource is now available as a free download