A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults

Lewis, Laura Foran

doi:10.1007/s10803-017-3168-3

Cited by 122 publications

(137 citation statements)

References 34 publications

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“…Accessing an autism diagnosis can be a lengthy and difficult process, both for parents of autistic 1 children (Crane, Batty, Adeyinka, Goddard, Henry, & Hill, 2018;Crane, Chester, Goddard, Henry, & Hill, 2016;Howlin & Moore, 1997) and individuals seeking a diagnosis in adulthood Jones, Goddard, Hill, Henry, & Crane, 2014;Lewis, 2017). A key aspect of this process is the disclosure of the diagnosis, with the nature of these consultations influencing how parents view their child's diagnosis and parents' subsequent coping strategies (Hasnat & Graves, 2000;Reed & Osborne, 2012).…”

Section: Parents' Views and Experiences Of Talking About Autism With mentioning

confidence: 99%

Parents’ views and experiences of talking about autism with their children

Crane

Jones

Prosser

et al. 2019

Autism

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The way an autism diagnosis is disclosed to parents has been found to play a crucial role in their acceptance of, and the way they cope with, their child’s diagnosis. Yet, research into parents’ subsequent experiences of disclosing a diagnosis to their children, and talking to their families about autism more generally, is limited. Using an online survey, the current study examined 558 parents’ experiences of talking about autism with their autistic and non-autistic children. Results demonstrated that most parents ( n = 379, 67.9%) had told their autistic children about their diagnosis. Despite few parents ( n = 163, 20.4%) receiving advice or support regarding the disclosure of the diagnosis, those that had disclosed felt satisfied with the process ( n = 319, 84.2%) and felt confident in talking about autism with their children ( n = 339, 92.4%). Those who had not told their autistic children about the diagnosis largely planned to discuss this with their child in the future ( n = 100, 73.5%), felt confident in doing so ( n = 95, 70.9%) and were satisfied with their decision ( n = 95, 70.4%). Analysis of open-ended data, using thematic analysis, highlighted the importance of openness and the need to tailor explanations to individual children’s needs, while acknowledging that disclosure could often be challenging for parents.

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Section: Parents' Views and Experiences Of Talking About Autism With mentioning

confidence: 99%

Parents’ views and experiences of talking about autism with their children

Crane

Jones

Prosser

et al. 2019

Autism

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“…In either case, the diagnosis can be an important gateway to support and services (Crane et al 2018). Yet there are many barriers to accessing a formal autism diagnosis in adulthood, including lengthy delays (Jones et al 2014) and a fear of not being believed by professionals (Lewis 2017). These barriers may be particularly pronounced for certain groups, such as women and girls (Bargiela et al 2016), those from minority ethnic communities (e.g., Zuckerman et al 2014) and those without intellectual disabilities and/or early language delays (Crane et al 2016).…”

Section: Introductionmentioning

confidence: 99%

Supporting Newly Identified or Diagnosed Autistic Adults: An Initial Evaluation of an Autistic-Led Programme

Crane

Hearst²,

Ashworth

et al. 2020

J Autism Dev Disord

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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.

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“…However, access to qualified professionals who provide autism diagnostic services for adults is scarce because (1) there are few professionals who provide this service, and (2) many adults may not have the resources needed to afford the assessment services. 14 Others may avoid seeking a diagnosis due to previous negative experiences with health care, social anxiety during appointments, fear of being disbelieved, concern about stigma associated with a formal diagnosis, and other barriers. 15 Given these barriers, some adults may choose to ''self-diagnose.''…”

Section: Introductionmentioning

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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A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults

Cited by 122 publications

References 34 publications

Parents’ views and experiences of talking about autism with their children

Parents’ views and experiences of talking about autism with their children

Supporting Newly Identified or Diagnosed Autistic Adults: An Initial Evaluation of an Autistic-Led Programme

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

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