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Journal: Autism : the international journal of research and practice

121

In the United States, health insurance coverage for autism spectrum disorder treatments has been historically limited. In response, as of 2015, 40 states and Washington, DC, have passed state autism insurance mandates requiring many health plans in the private insurance market to cover autism diagnostic and treatment services. This study examined five states' experiences implementing autism insurance mandates. Semi-structured, key-informant interviews were conducted with 17 participants representing consumer advocacy organizations, provider organizations, and health insurance companies. Overall, participants thought that the mandates substantially affected the delivery of autism services. While access to autism treatment services has increased as a result of implementation of state mandates, states have struggled to keep up with the demand for services. Participants provided specific information about barriers and facilitators to meeting this demand. Understanding of key informants' perceptions about states' experiences implementing autism insurance mandates is useful for other states considering adopting or expanding mandates or other policies to expand access to autism treatment services.

Concepts: United States, U.S. state, Autism, Pervasive developmental disorder, Asperger syndrome, Autism spectrum, Insurance, United States Marshals Service

80

Autobiographical descriptions and clinician observations suggest that some individuals with autism, particularly females, ‘camouflage’ their social communication difficulties, which may require considerable cognitive effort and lead to increased stress, anxiety and depression. Using data from 60 age- and IQ-matched men and women with autism (without intellectual disability), we operationalized camouflaging in adults with autism for the first time as the quantitative discrepancy between the person’s ‘external’ behavioural presentation in social-interpersonal contexts (measured by the Autism Diagnostic Observation Schedule) and the person’s ‘internal’ status (dispositional traits measured by the Autism Spectrum Quotient and social cognitive capability measured by the ‘Reading the Mind in the Eyes’ Test). We found that the operationalized camouflaging measure was not significantly correlated with age or IQ. On average, women with autism had higher camouflaging scores than men with autism (Cohen’s d = 0.98), with substantial variability in both groups. Greater camouflaging was associated with more depressive symptoms in men and better signal-detection sensitivity in women with autism. The neuroanatomical association with camouflaging score was largely sex/gender-dependent and significant only in women: from reverse inference, the most correlated cognitive terms were about emotion and memory. The underlying constructs, measurement, mechanisms, consequences and heterogeneity of camouflaging in autism warrant further investigation.

Concepts: Psychology, Brain, Measurement, Cognition, Memory, Autism, Mind, Asperger syndrome

74

‘Stereotyped or repetitive motor movements’ are characterised as core features in the diagnosis of autism, yet many autistic adults (and the neurodiversity movement) have reclaimed them as ‘stimming’. Supported by a growing body of scientific research, autistic adults argue that these behaviours may serve as useful coping mechanisms, yet little research has examined stimming from the perspective of autistic adults. Through interviews and focus groups, we asked 32 autistic adults to share their perceptions and experiences of stimming, including the reasons they stim, any value doing so may hold for them and their perceptions of others' reactions to stimming. Using thematic analysis, we identified two themes: stimming as (1) a self-regulatory mechanism and (2) lacking in social acceptance, but can become accepted through understanding. Autistic adults highlighted the importance of stimming as an adaptive mechanism that helps them to soothe or communicate intense emotions or thoughts and thus objected to treatment that aims to eliminate the behaviour.

62

Sharing information with other people relies on the ability to communicate well. Autism is defined clinically by deficits in social communication. It may therefore be expected that autistic people find it difficult to share information with other people. We wanted to find out whether this was the case, and whether it was different when autistic people were sharing information with other autistic people or with non-autistic people. We recruited nine groups, each with eight people. In three of the groups, everyone was autistic; in three of the groups, everyone was non-autistic; and three of the groups were mixed groups where half the group was autistic and half the group was non-autistic. We told one person in each group a story and asked them to share it with another person, and for that person to share it again and so on, until everyone in the group had heard the story. We then looked at how many details of the story had been shared at each stage. We found that autistic people share information with other autistic people as well as non-autistic people do with other non-autistic people. However, when there are mixed groups of autistic and non-autistic people, much less information is shared. Participants were also asked how they felt they had got on with the other person in the interaction. The people in the mixed groups also experienced lower rapport with the person they were sharing the story with. This finding is important as it shows that autistic people have the skills to share information well with one another and experience good rapport, and that there are selective problems when autistic and non-autistic people are interacting.

61

Autistic people are at high risk of mental health problems, self-injury and suicidality. However, no studies have explored autistic peoples' experiences of treatment and support for these difficulties. In partnership with a steering group of autistic adults, an online survey was developed to explore these individuals' experiences of treatment and support for mental health problems, self-injury and suicidality for the first time. A total of 200 autistic adults (122 females, 77 males and 1 unreported) aged 18-67 (mean = 38.9 years, standard deviation = 11.5), without co-occurring intellectual disability, completed the online survey. Thematic analysis of open-ended questions resulted in an overarching theme that individually tailored treatment and support was both beneficial and desirable, which consisted of three underlying themes: (1) difficulties in accessing treatment and support; (2) lack of understanding and knowledge of autistic people with co-occurring mental health difficulties and (3) appropriate treatment and support, or lack of, impacted autistic people’s well-being and likelihood of seeing suicide as their future. Findings demonstrate an urgent need for autism treatment pathways in mental health services.

50

Misunderstandings are social in nature, always having two sides. Yet the misunderstandings experienced by people with Asperger’s syndrome are usually studied in terms of the individual with a diagnosis, with less emphasis on social relations. We use a two-sided methodology to map out misunderstandings within 22 dyads (n = 44) consisting of people with Asperger’s syndrome and their family members. Both sides of the relationship were asked about 12 topics in terms of one’s rating of Self, one’s rating of Other and one’s predicted rating by Other. The findings show that people with Asperger’s are able to predict lower scores from family members, despite disagreeing with their view, and that family members often over-estimate the extent to which their relatives with Asperger’s syndrome are egocentrically anchored in their own perspective. The research demonstrates that a two-sided methodology is viable, and it uses it to identify how representations of Asperger’s syndrome can both support and hinder social understanding within relationships affected by Asperger’s.

Concepts: Scientific method, Syndromes, Interpersonal relationship, Asperger syndrome, Divination

47

Although autistic people may struggle to interact with others, many autistic people have said they find interacting with other autistic people more comfortable. To find out whether this was a common experience, we did hour-long interviews with 12 autistic adults. We asked them questions about how it feels when spending time with their friends and family, and whether it felt different depending on whether the friends and family were autistic or neurotypical. We analysed the interviews and found three common themes in what our participants said. First, they found spending with other autistic people easier and more comfortable than spending time with neurotypical people, and felt they were better understood by other autistic people. Second, autistic people often felt they were in a social minority, and in order to spend time with neurotypical friends and family, they had to conform with what the neurotypical people wanted and were used to. Third, autistic people felt like they belonged with other autistic people and that they could be themselves around them. These findings show that having time with autistic friends and family can be very beneficial for autistic people and played an important role in a happy social life.

39

We report results from a large qualitative study regarding the process of parents coming to understand the child has autism starting from the time of initial developmental concerns. Specifically, we present findings relevant to understanding how parents become motivated and prepared for engaging in care at this early stage. The study included primary data from 45 intensive interviews with 32 mothers and 9 expert professionals from urban and rural regions of Ontario, Canada. Grounded theory methods were used to guide data collection and analysis. Parents' readiness (motivation and capacity) for engagement develops progressively at different rates as they follow individual paths of meaning making. Four optional steps account for their varied trajectories: forming an image of difference, starting to question the signs, knowing something is wrong, and being convinced it’s autism. Both the nature of the information and professional help parents seek, and the urgency with which they seek them, evolve in predictable ways depending on how far they have progressed in understanding their child has autism. Results indicate the need for sensitivity to parents' varying awareness and readiness for involvement when engaging with them in early care, tailoring parent support interventions, and otherwise planning family-centered care pathways.

31

Research investigating expressivity in children with autism spectrum disorder has reported flat affect or bizarre facial expressivity within this population; however, the impact expressivity may have on first impression formation has received little research input. We examined how videos of children with autism spectrum disorder were rated for expressivity by adults blind to the condition. We further investigated the friendship ratings given by 44 typically developing children to the same videos. These ratings were compared to friendship ratings given to video clips of typically developing children. Results demonstrated that adult raters, blind to the diagnosis of the children in the videos, rated children with autism spectrum disorder as being less expressive than typically developing children. These autism spectrum disorder children were also rated lower than typically developing children on all aspects of our friendship measures by the 44 child raters. Results suggest that impression formation is less positive towards children with autism spectrum disorder than towards typically developing children even when exposure time is brief.

Concepts: Autism, Pervasive developmental disorder, Child, Asperger syndrome, Autism spectrum, PDD-NOS, Adult, Shutter speed

29

Little comparative research examines which community-based preschool intervention placements produce the best outcomes for which children with autism spectrum disorders. Autism-specific placements can provide intensive evidence-based care; however, inclusion settings provide interaction with typically developing peers, the importance of which is increasingly recognized. This study examined the association between early intervention placement in three settings (autism-only, mixed disability, or inclusive) and cognitive outcomes upon entry into elementary school in an urban school district for 98 preschool-aged children with autism spectrum disorders. Initial child and demographic characteristics were similar among the three placements. Controlling for initial cognitive scores and other covariates, cognitive outcomes for children in inclusive placements were better than those of children in mixed disability settings. A consistent pattern emerged that suggested the particular importance of inclusive placements for children with initially greater social impairments, greater adaptive behavior impairments, and at least a baseline level of language skills. Opportunities to interact with typically developing peers may be particularly beneficial for certain subgroups of young children with autism spectrum disorders. The results provide preliminary insight into important child characteristics to consider when parents and providers make preschool early intervention placement decisions.

Concepts: Autism, Pervasive developmental disorder, Asperger syndrome, Autism spectrum, PDD-NOS, Sociological and cultural aspects of autism, Primary education, Neurotypical