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Purpose – The purpose of this paper is to explore how a people-centred, design-led approach to the different needs and aspirations of adults with autism could help inform the design of space, objects and activities for individuals in their own homes to enhance everyday life experiences. There are dozens of studies that have reported the health benefits associated with good design and the Kingwood Trust set out to research what that might mean for the adults with autism it supports. Design/methodology/approach – The paper describes three projects: Housing Design, Garden Design and Exploring Sensory Preferences whose design interventions were realised through a process of design ethnography, to include and work with the people that Kingwood support who have limited verbal speech and learning disabilities. Participatory observation, co-design workshops, interviews, visual probes and mapping tools were created to gather insights about how a person perceives and engages with the physical environment, with a particular focus on their sensory sensitivities and special interests. Findings – The outcome of the project is a holistic, design-led approach to identifying the sensory preferences and special interests of adults with autism to inform the design of residential accommodation. A second project will be published at a later date, which will test and evaluate the effectiveness of the design interventions described in this paper as part of a PhD by practice supported by Kingwood Trust. Originality/value – Autistic adults with limited verbal speech and additional learning disabilities, are often excluded from design research. This paper bridges this gap by selecting and adapting design methods that invite the people that Kingwood support to be active participants within the design process. The revised DSM-5 is an important milestone that puts the sensory environment back onto the roadmap within autism research, however the relationship between people with autism and the physical environment is a relatively under-researched area. This paper bridges this gap in research and illustrates how an autistic person's interaction and reaction to their home environment, can create understanding, tangible insights and clues to inform the design and adaptation of environments to reduce triggers of anxiety, making them more comfortable, enjoyable and meaningful for that person. [ABSTRACT FROM AUTHOR]

To access and maintain paid employment is of importance for all people in our society. Today a large number of people are more or less excluded from the open labour market. One of these disadvantaged groups is people with Autism Spectrum Disorders (ASD). This paper presents the project KVAS - Assessment and Validation Asperger Syndrome, that took place in the municipality of Botkyrka in Sweden during the years 2007-2010. The Empowerment network in the Autism and Asperger Association in Sweden initiated the project aiming to develop ways to visualize the abilities of individuals with Asperger Syndrome to increase their chances to permanent paid employment. The outcome of the project The Validation Process is introduced together with the Barometer and My Profile, self-assessment tools that were developed in the project to assist people with ASD in assessing their own resources and support needs to increase self-advocacy. The Validation Process consists of 4 modules that concern work in different ways. The model was originally developed for group sessions in combination with individual work, but can also be used individually. It can be used in the Supported Employment process for work preparation, vocational profiling or as job support. [ABSTRACT FROM AUTHOR]

Several researchers stress the importance of listening to autistic adults' own experiences of work and related issues. This paper critically explores an ambivalent discourse of empowerment using notions of employment and work life in the Swedish autistic self-advocacy movement. The discourse analysis is based on articles from the Swedish autistic self-advocacy magazine Empowerment. In the data, three key themes linked to the notion of work are identified: alternative meanings of a 'real job', formulations of work-related problems, and solutions to these problems. We identify two storylines. The first, more dominant one, we call the recreated norm storyline. This storyline, in line with an individual/medical perspective on autism as deficit, represents autism as causing people with autism to have difficulties finding and keeping jobs in the open labour market and as entailing employment support. The second, counter narrative we call the challenged norm storyline. In line with the social model of disability, it focuses on structural barriers and discrimination against people with autism on the labour market. [ABSTRACT FROM AUTHOR]

There is a lack of information concerning adults with autism spectrum disorder (ASD), especially with regards to their access to health care. A paper and electronic survey was sent to 1,580 primary care physicians in Connecticut. 346 respondents returned a survey and provided care to adults with an ASD. This physician survey provides data on adults with ASD such as: reasons for physician visits, living arrangements, employment status, and any services they are receiving. Responses revealed inadequate training in the care of adults with an ASD and physicians interest in obtaining additional training. The ability to provide a medical home for adults with autism will need to address effective strategies to train current and future physicians. [ABSTRACT FROM AUTHOR]

Many aging parents care for adult children with autism spectrum disorder (ASD) and an additional loved one. This exploratory study compared differences among compound 1 (caring for an additional family member), compound 2 (caring for a typically developing minor child), and noncompound (solely caring for an adult child with ASD) caregivers on perceptions of the degree of support that care recipients need to perform specific types activities of daily living (ADL) that care recipients need assistance to complete. Each caregiver cared for at least one adult child with ASD. Results from a web-based survey completed by 320 aging caregivers were examined using Kruskal-Wallis ANOVA tests for independent samples. Compound 1 and noncompound caregivers were more likely to be involved in assisting their adult children with some ADLs when compared with compound 2 caregivers. Findings provide insight into the realities of caregivers with regard to ADL needs of their adult children. [ABSTRACT FROM AUTHOR]

Parental caregivers can expect to support their children with autism spectrum disorder (ASD) across the lifespan. Providing ongoing support for adult children with ASD who have difficulty performing activities of daily living (ADLs) independently can increase caregiver burden. This may be particularly challenging for compound caregivers (caring for at least one adult child with ASD and another care recipient). The present study investigated differences in relationships between caregiver burden and basic ADLs (BADLs) and instrumental ADLs (IADLs) between compound and noncompound caregivers. Using a nonexperimental correlational research design, 320 parental caregivers of adults with ASD completed a web-based survey. The quantitative analysis compared compound and noncompound caregivers on relationships between caregiver burden and ability to perform ADLs independently. Differences for caregiver burden, BADLs, and IADLs between compound and noncompound caregivers were statistically significant. However, comparison of correlations of caregiver burden and ADLs between the two groups was not significant. These findings provided support that caregiver burden was negatively impacted by the lack of independence in functional ability of their care recipients with ASD for both groups. Social workers and other professionals should offer relevant interventions, supports, and services that benefit compound and noncompound caregivers and their adult children with ASD. [ABSTRACT FROM AUTHOR]

Autistic adults in need of long-term services and supports spend months on waiting lists before receiving such services through Medicaid. Data from a state-wide survey of adults and their caregivers on a waiting list for autism waivers suggest that the majority have unmet needs for functional skills services (63.6%), employment or vocation services (62.1%), and mental and behavioral health services (52.8%). Almost a third require case management services (28.3%). Predictors of greater service need are African American race and the number of physical and behavioral health diagnoses. Predictors of greater service receipt were employment status, housing type, and school enrollment; there was lower service receipt for African American race, Hispanic ethnicity, over age 21 years, and college completion. [ABSTRACT FROM AUTHOR]

Children diagnosed with autism spectrum disorder (ASD) are reaching adulthood and require some form of lifelong care. Many parents continue caring for their adult children with ASD for as long as physically possible. As parents age, many also may provide care for another loved one, such a spouse or parent. This study compares compound (those providing care for multiple loved ones) and noncompound parental caregivers (those providing care solely for an adult child with ASD) on six dimensions of quality of life (enjoys life, life is meaningful, ability to concentrate, accepts bodily appearance, satisfied with self, and frequency of negative feelings). Specifically, this study determined the extent to which compound and noncompound caregivers' quality of life differed. The present study included 320 parents (age 50 or older) of adult children (18 or older) diagnosed with ASD who completed a web-based survey. T-tests for independent samples compared the six dimensions and overall quality of life between compound and noncompound caregivers. Results indicated that compound caregivers were less able to concentrate and had fewer negative feelings than noncompound caregivers. Further research is needed to determine the effects of caregiving on the multidimensional aspects of quality of life. [ABSTRACT FROM AUTHOR]

This study provided a description of types and dimensions of informal and formal social support among aging parental caregivers of adult children diagnosed with autism spectrum disorder (ASD). Parents participated in a web-based survey regarding use of and satisfaction with social support services for parents or their adult children. Results indicated that many parents participated in autism support groups (27.5%), with psychiatric services (48.8%), counseling (40.6%), and financial assistance (39.7%) the most commonly used formal social supports. Emotional support (88.8%) and informational support (67.5%) were the most common informal social supports used. Professionals who are working with parental caregivers and their adult children diagnosed with ASD should be aware of available social support services to help them find needed services. [ABSTRACT FROM AUTHOR]

Measuring treatment efficacy in individuals with Autism Spectrum Disorder (ASD) relies primarily on behaviors, with limited evidence as to the neural mechanisms underlying these behavioral gains. This pilot study addresses this void by investigating neural and behavioral changes in a Phase I trial in young adults with high‐functioning ASD who received an evidence‐based behavioral intervention, Virtual Reality‐Social Cognition Training over 5 weeks for a total of 10 hr. The participants were tested pre‐ and post‐training with a validated biological/social versus scrambled/nonsocial motion neuroimaging task, previously shown to activate regions within the social brain networks. Three significant brain‐behavior changes were identified. First, the right posterior superior temporal sulcus, a hub for socio‐cognitive processing, showed increased brain activation to social versus nonsocial stimuli in individuals with greater gains on a theory‐of‐mind measure. Second, the left inferior frontal gyrus, a region for socio‐emotional processing, tracked individual gains in emotion recognition with decreased activation to social versus nonsocial stimuli. Finally, the left superior parietal lobule, a region for visual attention, showed significantly decreased activation to nonsocial versus social stimuli across all participants, where heightened attention to nonsocial contingencies has been considered a disabling aspect of ASD. This study provides, albeit preliminary, some of the first evidence of the harnessable neuroplasticity in adults with ASD through an age‐appropriate intervention in brain regions tightly linked to social abilities. This pilot trial motivates future efforts to develop and test social interventions to improve behaviors and supporting brain networks in adults with ASD. Autism Res 2018, 11: 713–725. © 2018 The Authors Autism Research published by International Society for Autism Research and Wiley Periodicals, Inc. Lay Summary: This study addresses how the behavioral changes after treatment for ASD reflect underlying brain changes. Before and after receiving VR‐SCT, young adults with high‐functioning ASD passively viewed biological motion stimuli in a MRI scanner, tapping changes in the social brain network. The results reveal neuroplasticity in this age population, extending the window of opportunity for interventions to impact social competency in adults with ASD. [ABSTRACT FROM AUTHOR]

The present study aimed to: determine the extent to which the five factor model of personality (FFM) accounts for variability in autism spectrum disorder (ASD) symptomatology in adults, examine differences in average FFM personality traits of adults with and without ASD and identify distinct behavioral phenotypes within ASD. Adults (N = 828; nASD = 364) completed an online survey with an autism trait questionnaire and an FFM personality questionnaire. FFM facets accounted for 70 % of variance in autism trait scores. Neuroticism positively correlated with autism symptom severity, while extraversion, openness to experience, agreeableness, and conscientiousness negatively correlated with autism symptom severity. Four FFM subtypes emerged within adults with ASD, with three subtypes characterized by high neuroticism and none characterized by lower-than-average neuroticism. [ABSTRACT FROM AUTHOR]

People with autism are objects of interventions, such as social training, that construct a normate (i.e., neurotypical) subject position. The emerging neurodiverse movements are reconceptualizing the meaning of autism. This paper examines expressions of an emerging counter-hegemonic discourse of Asperger subjectivity in the Swedish neurodiverse movement by exploring an ambivalent discourse of adaptation among adults with autism. The material was gathered during three months of ethnographic fieldwork in an educational setting in Sweden among adults diagnosed with Asperger syndrome. The key meanings linked to the discourse of adaptation concern meaningful versus meaningless training, adaptation to an NT environment or to the person with autism, the meaning of affirmation, and the possibility of understanding the experience of autism. An understanding of adaptation is treated as integral to producing a counter-hegemonic discourse of "normal for an Asperger" and alternative forms of autistic normalcy formulated by adults with autism. [ABSTRACT FROM AUTHOR]

Research is increasingly demonstrating the importance of monitoring indices of happiness as part of behavioral programs for individuals who have severe intellectual disabilities. We evaluated a practitioner-oriented process for identifying and validating individualized indices of this private event among three adults with autism who were nonvocal or minimally vocal. Caregiver surveys were administered to obtain agreement regarding behavior displayed when the individuals were happy and unhappy, as well as situations in which they were likely to experience happiness and unhappiness. Observations corroborated caregiver opinion in that participants displayed more happiness indices in situations reported to be accompanied by happiness, and for the most part, more unhappiness indices in reported unhappiness situations. Subsequent choices by each participant supported the validity of the individualized indices. Results are discussed regarding how identifying happiness indices can be a useful component of behavioral applications, as well as guidelines and cautions regarding use of the indices in routine practice. [ABSTRACT FROM AUTHOR]

This study explores the production of a counterhegemonic discourse of "autistic normalcy" among adults with high-functioning autism by analyzing notions of diagnosis. The discourse analyses are based on material from ethnographic fieldwork in a Swedish educational setting. Study participants were 3 male and 9 female adults who had been diagnosed with Asperger syndrome. The notion of diagnosis comprises issues concerning coming out and knowledge production. The findings capture an ongoing reformulation process among people involved in the autistic self-advocacy movement when it comes to the meanings of Asperger syndrome and what it means to be a person with Asperger syndrome. [ABSTRACT FROM AUTHOR]

The AQ (Autism-Spectrum Quotient) is a self-administered instrument for measuring the degree to which an adult with normal intelligence has the traits associated with the autistic spectrum. The AQ was administered in Japan to test whether the UK results would generalize to a very different culture. Three groups of subjects, adults with AS or HFA ( n=57), adult controls ( n=194), and University students ( n=1050) were assessed. The adults with AS/HFA had a mean AQ score which was significantly higher than both the controls and the University students. Among the controls, males scored significantly higher than females. The similarity of results in both the general population and the clinical group across the two cultures was remarkable. [ABSTRACT FROM AUTHOR]