Changes in Autism Nosology: The Social Impact of the Removal of Asperger’s Disorder from the Diagnostic and Statistical Manual for Mental Disorders, Fifth Edition (DSM-5)

Katz, Lindsay; Nayar, Kritika; Garagozzo, Ariana; Schieszler-Ockrassa, Christine; Paxton, Jessica

doi:10.1007/s10803-019-04233-4

Cited by 13 publications

(15 citation statements)

References 32 publications

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“…Based on the theorized characteristics of the ''lost generation,'' I hypothesized that those who self-diagnose will be more likely to be older, women, and employed. Since social stigma is lower for Asperger's syndrome than for autism 27 and because self-diagnosed adults are able to choose their diagnostic category, I hypothesized that self-diagnosed individuals will prefer the less stigmatizing term of ''Aspergers'' and will be less likely to choose the term ''autism. ''…”

Section: Stigma Autism Identity and The Self-diagnosedmentioning

confidence: 99%

Autism Identity and the “Lost Generation”: Structural Validation of the Autism Spectrum Identity Scale and Comparison of Diagnosed and Self-Diagnosed Adults on the Autism Spectrum

McDonald

2020

Autism in Adulthood

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Background: A population segment of autistic adults are underidentified due, in part, to historic changes in criteria for diagnosing autism and diagnostic biases related to gender, socioeconomic status, and other individual characteristics such as intellectual functioning. Some of these individuals, described as the ''lost generation,'' may choose to self-diagnose. Although little is known about this population, it is possible that they share similar self-conceptualizations or internalized stigma as their diagnosed counterparts. This study reports on the structural validity of the Autism Spectrum Identity Scale (ASIS) with individuals diagnosed and selfdiagnosed with autism and compares the demographic characteristics, stigma, self-concept, and quality of life of these two groups. Methods: Over 1000 adults diagnosed (n = 893) or self-diagnosed (n = 245) with autism were recruited through organizations serving the autism community to participate in a nationally distributed online survey that included demographic questions and measures for stigma, self-concept, quality of life, and well-being. The diagnosed data set was randomly split with exploratory factor analysis performed on a training data set. Split-half crossvalidation was used to predict the factor structure of the holdout data set. Then, the full diagnosed data set structure was used to determine the generalizability of the factor structure to the self-diagnosed data set. The diagnosed and self-diagnosed were also compared for differences in gender, age, employment status, diagnostic term preference, and factors of self-concept (autism identity and self-esteem), stigma, and quality of life. Results: Factor analysis of diagnosed participants yielded a four-factor structure, consistent with previous research, with strong split-sample cross-validation and good internal consistency. Factor predictions of the selfdiagnosed data set from the diagnosed data set ranged from 0.97 to 1.00 with similar internal consistency. Selfdiagnosed participants were more likely to be older, women, or employed and less likely to be students or prefer the term ''autism'' than those with an autism diagnosis. The groups were remarkably similar in reported stigma, self-esteem, quality of life, and in ASIS factors; both groups reported lower quality of life than the general population. Conclusions: The ASIS demonstrated the same internal structure with both the diagnosed and self-diagnosed samples. The profile of self-diagnosed participants matches the profile hypothesized for the ''lost generation'' and others at risk of being underidentified for autism. Both populations appear to be similarly struggling with employment, stigma, and quality of life. Future research should examine whether self-diagnosed individuals meet criteria for autism or could benefit from interventions, programs, or services serving autism communities.

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Section: Stigma Autism Identity and The Self-diagnosedmentioning

confidence: 99%

Autism Identity and the “Lost Generation”: Structural Validation of the Autism Spectrum Identity Scale and Comparison of Diagnosed and Self-Diagnosed Adults on the Autism Spectrum

McDonald

2020

Autism in Adulthood

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“…Autism spectrum disorder (ASD) is a developmental disorder that is mainly manifested as social and communication impairments, as well as interest restriction and repetitive behaviors ( 1 ). The prevalence of ASD is increasing year by year.…”

Section: Introductionmentioning

confidence: 99%

Urgency in Improving Child Health Care Workers' Awareness and Knowledge of ASD: Findings From a Cross-Sectional Study in Southwest China

Zhou²,

Liu

et al. 2021

Front. Psychiatry

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Objective: To evaluate the levels of awareness and knowledge of ASD among child health care workers in China, we conducted a cross-sectional, questionnaire-based study to assess the participants' awareness and knowledge of ASD.Methods: A total of 159 child health care workers from Southwest China participated in the survey and filled out the questionnaire.Descriptive analysis was conducted on the five parts of the questionnaire, including general knowledge, symptomology, screening and diagnosis, and intervention and treatment. Univariate analysis was used to assess impacts of the participants' basic demographic characteristics on the questionnaire scores. Multivariate analysis was used to analyze association of the participants' basic demographic characteristics and the questionnaire scores.Results: Less than 15% of the participants knew that ASD is a developmental, congenital and genetic disorder. Few participants knew that the symptoms include language disorder (38.4%) and social dysfunction (29.6%). A minority of the participants knew the diagnostic criteria (22.6%) and the age for early screening (14.5%). A total of 23.9% of the participants agreed that there are no effective drugs to treat ASD, and 6.3% agreed that ASD is incurable. A number of years in practice of ≥10 (OR = 0.3249, 95% CI: 0.1080–0.9189) was the main factor related to a high questionnaire score.Conclusions: Most participants had relatively low levels of awareness and knowledge of ASD, especially in terms of general knowledge as well as knowledge of intervention and treatment. Working for more than 10 years was a significant predictor of higher levels of awareness and knowledge of ASD. ASD-related training and knowledge dissemination are crucial for the early diagnosis and intervention of ASD. Child health care workers' awareness and knowledge of ASD needs to be improved to help build public awareness about ASD.

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“…Associations assert that the introduction of Asperger syndrome into a broad, undifferentiated category undermines the identity of the people affected by this syndrome. This concrete idea is supported by the findings in Katz et al ( 76 ) study, who highlight the fact that shifting from autism to autism spectrum disorder creates a certain ambiguity that might create potential malaise in several different settings. However, the vision adopted in the DSM-5, which is to classify ASD depending on the level of support they need, corresponds better to the rights-based vision of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).…”

Section: Discussionmentioning

confidence: 64%

“…We acknowledge that this might not be very easy considering how broad the spectrum is but we think that we could clearly benefit from a more focussed and replicable research line. The diagnostic labels granted to the different individuals within the spectrum impact the societal views the public ( 76 ) and different communities would form on these people. This will of course have great influences on this concrete population's self-esteem, social, psychological and emotional development ( 41 ).…”

Section: Discussionmentioning

confidence: 99%

The changing faces of autism: The fluctuating international diagnostic criteria and the resulting inclusion and exclusion—A Norwegian perspective

2022

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The common understanding of autism spectrum disorders (ASD) has gone through a number of permutations since the first description in 1943. Throughout these shifting understandings, there have been a number of behaviors and diagnostic criteria associated with the condition, many of which are missing in the most recent classifications. The rates of diagnoses of autism have increased greatly. However, there is no reason to think there has been any change in occurrence over the last 70 years, suggesting rather an increase in our knowledge and awareness. Autism has been the subject of several misapprehensions and misrepresentations throughout history. This might be due to heterogeneity of the cases. In addition, the diagnosing of autism spectrum disorders is mainly based on observation and behavioral interpretation, and thus dependent on subjective perceptions of the clinicians themselves. This current scoping review article intends to provide a view on the evolution of the concept of autism and the current stance within Norwegian scholarship, and how it is shaped by international discourses and cultural diversities Such changing concepts especially impacts people with the diagnosis, as it can affect their access to social services, as well as their self-identification as people with ASD.

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Changes in Autism Nosology: The Social Impact of the Removal of Asperger’s Disorder from the Diagnostic and Statistical Manual for Mental Disorders, Fifth Edition (DSM-5)

Cited by 13 publications

References 32 publications

Autism Identity and the “Lost Generation”: Structural Validation of the Autism Spectrum Identity Scale and Comparison of Diagnosed and Self-Diagnosed Adults on the Autism Spectrum

Autism Identity and the “Lost Generation”: Structural Validation of the Autism Spectrum Identity Scale and Comparison of Diagnosed and Self-Diagnosed Adults on the Autism Spectrum

Urgency in Improving Child Health Care Workers' Awareness and Knowledge of ASD: Findings From a Cross-Sectional Study in Southwest China

The changing faces of autism: The fluctuating international diagnostic criteria and the resulting inclusion and exclusion—A Norwegian perspective

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