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Different-- not less : inspiring stories of achievement and successful employment from adults with autism, Asperger's, and ADHD
Fourteen individuals with autism, Asperger's syndrome, or attention-deficit hyperactivity disorder share the challenges they experienced growing up, their lives, relationships, and eventual careers.
Book
Exploring Racial Discrimination, Disability Discrimination, and Perception of the Future Among Black-Identifying Emerging Adults with and without Autism in the United States: A Mixed-Methods Descriptive Study
Discrimination experienced by Black emerging adults with autism is rarely studied nor have their experiences been juxtaposed to Black emerging adults without autism. A mixed methods descriptive approach was used to describe responses to open-ended questions collected as part of a larger study of discrimination experienced by Black emerging adults with autism (n = 14) and Black emerging adults without autism (n = 20). Questions focused around racial discrimination, disability discrimination, and perception of the future. Qualitative and quantitative content analysis were applied. Qualitatively- a manifest approach was used, and quantitatively- frequency counts and ratios were identified within themes and subthemes. Four main themes and twelve subthemes were identified. Racial discrimination had two themes: 1)
Impact on mental health,
and 2) S
ocietal threats
, with five subthemes, each reported at higher rates by people without autism (Theme 1 = 5:7, Theme 2 = 3:11). Disability discrimination was only reported on by those with autism, and had one main theme of neurodiverse/autism bias, and three subthemes. Perception of the future contained the theme of
emerging life hopes
, with four subthemes. Subthemes relating to work/career/family and future unknown were reported more highly by those without autism than with autism (1:8 and 4:7 respectively), while subthemes describing diverse or unique priorities for fulfillment and mental wellness were reported only by those with autism (6:0 and 4:0 respectively). Study findings suggest unique experiences and needs among Black emerging adults with autism, as well as the consequences of anti-blackness and anti-ableism/neurobigotry which can have double impact in their lives, spanning different ages and stages. Results have implications for building resiliency among Black persons with autism and without autism as they transition to adulthood.
Journal Article
Evidence-Based Practices for Children, Youth, and Young Adults with Autism: Third Generation Review
This systematic review describes a set of practices that have evidence of positive effects with autistic children and youth. This is the third iteration of a review of the intervention literature (Odom et al. in J Autism Dev Disorders 40(4):425–436, 2010a; Prevent School Fail 54(4):275–282, 2010b; Wong et al. in
https://autismpdc.fpg.unc.edu/sites/autismpdc.fpg.unc.edu/files/imce/documents/2014-EBP-Report.pdf
; J Autism Dev Disorders 45(7):1951–1966, 2015), extending coverage to articles published between 1990 and 2017. A search initially yielded 31,779 articles, and the subsequent screening and evaluation process found 567 studies to include. Combined with the previous review, 972 articles were synthesized, from which the authors found 28 focused intervention practices that met the criteria for evidence-based practice (EBP). Former EBPs were recategorized and some manualized interventions were distinguished as meeting EBP criteria. The authors discuss implications for current practices and future research.
Journal Article
Understanding Camouflaging as a Response to Autism-Related Stigma: A Social Identity Theory Approach
Camouflaging refers to strategies used by autistic people to mask or hide social difficulties. The current study draws on Social Identity Theory to examine the relationship between camouflaging and autism-related stigma, testing the hypothesis that camouflaging represents an individualistic strategy in response to stigma. Two hundred and twenty-three autistic adults completed an online survey measuring perceived autism-related stigma, individualistic and collective strategies, camouflaging and mental wellbeing. Results indicated that higher camouflaging was positively associated with autism-related stigma and both individualistic and collective strategy use. Autism-related stigma was associated with lower wellbeing however this relationship was not mediated by camouflaging. These findings demonstrate how stigma contributes to camouflaging and highlight the complexities of navigating autistic identity while still camouflaging.
Journal Article
Understanding the Reasons, Contexts and Costs of Camouflaging for Autistic Adults
Camouflaging entails ‘masking’ in or ‘passing’ social situations. Research suggests camouflaging behaviours are common in autistic people, and may negatively impact mental health. To enhance understanding of camouflaging, this study examined reasons, contexts and costs of camouflaging. 262 autistic people completed measures of camouflaging behaviours, camouflaging contexts (e.g. work vs. family), camouflaging reasons (e.g. to make friends) and mental health symptoms. Findings indicated a gender difference in reasons for camouflaging, with autistic women more likely to endorse “conventional” reasons (e.g. getting by in formal settings such as work). Both camouflaging highly across contexts and ‘switching’ between camouflaging in some contexts but not in others, related to poorer mental health. These findings have implications for understanding camouflaging in autistic adults.
Journal Article
Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals
Accessing an autism diagnosis is a key milestone, both for an individual and their family. Using a qualitative methodology, the current study examined the views and experiences of ten autistic adults, ten parents of children on the autism spectrum, and ten professionals involved in autism diagnosis, all based in the United Kingdom (UK). Interviewing these 30 respondents about the diagnostic process and subsequent support options, the goal was to identify aspects of the diagnostic process that are working well, and areas in which improvements are needed. Using thematic analysis, three key themes were identified: the process of understanding and accepting autism; multiple barriers to satisfaction with the diagnostic process; and inadequate post-diagnostic support provision.
Journal Article
Supporting Newly Identified or Diagnosed Autistic Adults: An Initial Evaluation of an Autistic-Led Programme
Sixteen adults (diagnosed or self-identified as autistic) participated in one of two iterations of a ten-week autistic-led programme, aimed at helping autistic adults learn more about autism within a peer group context. Motivations for taking part in the programme included a desire for: (1) exploration of autism; (2) empowerment; and (3) the development of practical strategies and coping mechanisms. Interviews were conducted upon completion of the programme and again 6 months later. Using thematic analysis, three themes were identified: (1) appreciation of the autistic-led nature of the programme; (2) unity in diversity; and (3) developing a positive, practical outlook on autism. These promising initial results highlight the value of autistic-led peer support for those recently diagnosed/identified as autistic.
Journal Article
In Our Own Words: The Complex Sensory Experiences of Autistic Adults
Autistic adults commonly experience sensory reactivity differences. Sensory hyperreactivity is frequently researched, whilst hyporeactivity and seeking, and experiences across domains, e.g., vision, are often neglected. Therefore, we aimed to understand more about the sensory experiences of autistic adults. We conducted a mixed-methods study, co-produced with stakeholders; recruiting 49 autistic adults who completed an online survey. Firstly, quantitative results and content analysis enhanced our understanding of sensory input/contexts associated with sensory hyperreactivity, hyporeactivity, and seeking across modalities. Secondly, thematic analysis developed themes relating to ‘Outcomes’, ‘Control’, ‘Tolerance and management’, and ‘The role of other people’, informing a theoretical model of sensory reactivity differences in autistic adults. These findings have implications for support services and improving quality of life for autistic adults.
Journal Article
Centering Autistic Perspectives: Social Acceptability of Goals, Learning Contexts, and Procedures for Young Autistic Children
Despite the importance of centering autistic perspectives in educational decision-making for autistic children, few studies have directly assessed autistic perspectives on the social acceptability of early childhood practices. We conducted an online survey to recruit perspectives of autistic adults on a current, comprehensive range of educational practices typically employed with autistic children. We also extended the survey to caregivers and early childhood practitioners, to identify commonalities and discrepancies between shareholder groups. We conducted a descriptive survey study to assess social acceptability of goals, learning contexts, and procedures typically implemented with young autistic children. We received responses from 660 individuals, 226 of whom identified as autistic. For Likert scale and ranked items, we reported median rating and ranking for each item, by shareholder group. For open-ended questions, we conducted open and axial coding, to determine consistent themes within and across shareholder groups. Respondents reported (a) high acceptability for goals promoting self-determination and low social validity for goals promoting masking; (b) high acceptability for antecedent interventions and low social validity for some forms of extinction; (c) that appropriate learning environments are highly context dependent, varying with individual needs; and (d) that the child is the most important shareholder in educational decision-making. We make recommendations to practitioners in response to survey results, including (a) respecting autistic culture and characteristics in selecting goals; (b) considering social, emotional, and psychological needs in selecting procedures; and (c) individualizing goals, learning contexts, and procedures based on the child’s perspectives and unique needs.
Journal Article
Social Validity of Pivotal Response Treatment for Young Autistic Children: Perspectives of Autistic Adults
The social validity of autism behavioral intervention has been questioned. Naturalistic Developmental Behavioral Interventions (NDBIs) attempt to address some concerns, but it is unclear whether autistic people consider NDBIs socially valid. Social validity of an NDBI, Pivotal Response Treatment (PRT), was investigated through autistic adults commenting on videos of autistic children receiving PRT. Qualitative coding of responses generated three themes: respect for individuals; assessment of intervention implementation; and socioemotional considerations. Although video brevity limits the scope of the present study’s conclusions, participants highlighted PRT components that appeared socially valid (e.g., reinforcing attempts, following the child’s lead) and aspects appearing invalid (e.g., overemphasis on spoken language). Therefore, adjustments appear necessary for PRT to be fully acceptable to the autistic community.
Journal Article