Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation.

Recent debates within the autism advocacy community have raised difficult questions about who can credibly act as a representative of a particular population and what responsibilities that role entails. We attempt to answer these questions by defending a set of evaluative criteria that can be used to assess the legitimacy of advocacy organizations and other nonelectoral representatives. With these criteria in hand, we identify a form of misrepresentation common but not unique to autism advocacy, which we refer to as partial representation. Partial representation occurs when an actor claims to represent a particular group of people but appropriately engages with only a subset of that group. After highlighting symbolic and substantive harms associated with partial representation, we propose several strategies for overcoming it.

Corrigendum: Understanding profound autism: implications for stigma and supports.

[This corrects the article DOI: 10.3389/fpsyt.2024.1287096.].

Understanding profound autism: implications for stigma and supports.

Introduction: Societal perceptions and lack of understanding of autism spectrum disorder can be stigmatizing for autistic individuals and their families. This may be particularly the case for individuals who meet criteria for profound autism. Despite the considerable service needs of this marginalized group, there is little data on the prevalence of profound autism, nor on the experiences of those with profound autism and their families. Methods: The current study leveraged a mixed-methods approach to address these gaps. First, the prevalence of profound autism was examined in six samples-three from the United States and three from Western Europe. Second, inductive thematic analysis was used to code interviews from 20 caregivers of profoundly autistic adults. Results: The prevalence of profound autism varied widely across the six samples-from 11% to 48%. There were also notable differences between samples in prevalence by gender, race, and ethnicity. Two overarching themes were identified via inductive thematic analysis: Community Perceptions of Autism and Family Support Needs and Advocacy Challenges. Though caregivers were not directly asked about stigmatization during interviews, 85% of caregivers reported at least one instance of perceived stigma. Discussion: Future research should continue to examine the unique needs and stigmatization experiences of profoundly autistic individuals and their families across the life course.

Profound Autism: An Imperative Diagnosis.

Profound autism refers to a subset of individuals with autism spectrum disorder who have an intellectual disability with an intelligence quotient less than 50 and minimal-to-no language and require 24-hour supervision and assistance with activities of daily living. The general pediatrician will invariably work with autistic children across the spectrum and will likely encounter youth with profound autism. Awareness of profound autism as a real entity describing autistic children with concomitant intellectual disability and language impairment who require 24-hour care is the first step in developing a solid pediatric home for these youth.

A full semantic toolbox is essential for autism research and practice to thrive.

Individuals diagnosed with autism spectrum disorder (ASD) present with a highly diverse set of challenges, disabilities, impairments and strengths. Recently, it has been suggested that researchers and practitioners avoid using certain words to describe the difficulties and impairments experienced by individuals with ASD to reduce stigma. The proposed limitations on terminology were developed by only a subset of the autism community, and the recommendations are already causing negative consequences that may be harmful to future scientific and clinical endeavors and, ultimately, to people with ASD. No one should have the power to censor language to exclude the observable realities of autism. Scientists and clinicians must be able to use any scientifically accurate terms necessary to describe the wide range of autistic people they study and support, without fear of censure or retribution.

Beyond the Schoolyard: The Contributions of Parenting Logics, Financial Resources, and Social Institutions to the Social Class Gap in Structured Activity Participation.

We investigate cultural and structural sources of class differences in youth activity participation with interview, survey, and archival data. We find working- and middle-class parents overlap in parenting logics about participation, though differ in one respect: middle-class parents are concerned with customizing children's involvement in activities, while working-class parents are concerned with achieving safety and social mobility for children through participation. Second, because of financial constraints, working-class families rely on social institutions for participation opportunities, but few are available. Schools act as an equalizing institution by offering low-cost activities, allowing working-class children to resemble middle-class youth in school activities, but they remain disadvantaged in out-of-school activities. School influences are complex, however, as they also contribute to class differences by offering different activities to working- and middle-class youth. Findings raise questions about the extent to which differences in participation reflect class culture rather than the objective realities parents face.

Only English by the third generation? Loss and preservation of the mother tongue among the grandchildren of contemporary immigrants.

We investigate whether a three-generation model of linguistic assimilation, known from previous waves of immigration, can be applied to the descendants of contemporary immigrant groups. Using the 5% Integrated Public Use Microdata Sample 1990 file, we examine the home languages of second- and third-generation children and compare the degree of their language shift against that among the descendants of European immigrants, as evidenced in the 1940 and 1970 censuses. Overall, the rates of speaking only English for a number of contemporary groups suggest that Anglicization is occurring at roughly the same pace for Asians as it did for Europeans, but is slower among the descendants of Spanish speakers. Multivariate models for three critical groups--Chinese, Cubans, and Mexicans--indicate that the home languages of third-generation children are most affected by factors, such as intermarriage, that determine the languages spoken by adults and by the communal context.