Brief Report: Participation of Black and African-American Families in Autism Research

Shaia, Wendy E.; Nichols, Helen M.; Dababnah, Sarah; Campion, Karen; Garbarino, Nicole

doi:10.1007/s10803-019-03926-0

Cited by 46 publications

(26 citation statements)

References 18 publications

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“…In order not to detract from the focus on language and participants' own perspectives, relatively few demographic details were taken-e.g., ethnicity or psychometric scores. However, lacking this information may limit the generalisability of findings: experience of menopause appears to differ between ethnic groups (Sayakhot et al, 2012), but ethnic minorities are under-represented in autism research (Shaia et al, 2019). Furthermore, the online method of recruitment meant that respondents were likely to have been searching for information about menopause already, perhaps due to having particularly difficult menopausal experiences (Moseley et al, 2020b).…”

Section: Discussionmentioning

confidence: 99%

“It's Not Just in My Head, and It's Not Just Irrelevant”: Autistic Negotiations of Menopausal Transitions

Karavidas

Visser

2021

J Autism Dev Disord

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Physical and psychological changes during menopause can be especially tumultuous for autistic people: difficulties with sensory sensitivity and daily functioning may be exacerbated. Through individual interviews, we examined the language used by seven peri- or post-menopausal autistic people to construct their experiences, and to consider the implications for their wellbeing and identities. Our analysis, which utilised thematic decomposition, yielded three discursive themes. The theme “Uncertainty about Changes” addressed how limited awareness and understanding of menopause combined with difficulties recognising internal states. However, with “Growing Self-Awareness and Self-Care”, some participants made conscious efforts to resist negative societal constructions of both autism and menopause. The theme “Navigating Support Options” addressed the interpersonal and systemic barriers participants faced when seeking support. There is a need for accessible information for autistic people experiencing menopause, and greater professional awareness.

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Section: Discussionmentioning

confidence: 99%

“It's Not Just in My Head, and It's Not Just Irrelevant”: Autistic Negotiations of Menopausal Transitions

Karavidas

Visser

2021

J Autism Dev Disord

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“…Enrolling families from diverse racial and ethnic groups in research and intervention may be a challenge (39). In general, barriers within the ASD service system are more substantial for low-income and ethnic minority families (40,41).…”

Section: Using An Implementation Science Framework To Support Communimentioning

confidence: 99%

Considerations in implementing evidence-based early autism spectrum disorder interventions in community settings

Stahmer¹,

Dababnah²,

Rieth³

2019

Pediatr Med

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Evidence-based practices (EBPs) in early intervention for autism spectrum disorder (ASD) have the potential to improve children’s developmental trajectories and address family needs. However, the successful use of EBPs in community early intervention settings requires careful attention to the context in which services are delivered. Implementation science, and specifically the Exploration, Preparation, Implementation, and Sustainment (EPIS) Model, provides a framework to examine context across multiple levels and identify barriers and facilitators to community EBP use. This article identifies several considerations most relevant for early intervention in ASD at the outer and inner context levels, as well as bridging and innovation factors. Outer context considerations include the policies and funding streams surrounding service delivery, the role of advocacy in shaping the service landscape, the availability of appropriate specialists to provide services, and family cultural characteristics. Inner context factors include the individual characteristics of both the children receiving the service as well as the provider delivering the service, in addition to the leadership and organizational climate surrounding the use of a particular EBP. We also discuss considerations of the specific innovation (in this case, EBP early interventions) to be deployed, as well as bridging factors.

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“…1,2,4,5 Discussions about a possible increase in ASD prevalence have pointed to its shifting diagnostic features, 6,7 with little research in Black, Asian, and racial/ethnic minority groups. [8][9][10] Accurate estimates of ASD prevalence are vital to planning diagnostic, educational, health, and social care services and identifying possible access barriers to diagnostic pathways and services and inequalities based on social determinants of health, such as socioeconomic disadvantage, race/ethnicity, and or sex.…”

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confidence: 99%

Association of Race/Ethnicity and Social Disadvantage With Autism Prevalence in 7 Million School Children in England

et al. 2021

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The global prevalence of autism spectrum disorder (ASD) has been reported to be between 1% and 2% of the population, with little research in Black, Asian, and other racial/ethnic minority groups. Accurate estimates of ASD prevalence are vital to planning diagnostic, educational, health, and social care services and may detect possible access barriers to diagnostic pathways and services and inequalities based on social determinants of health.OBJECTIVE To evaluate whether socioeconomic disadvantage is associated with ASD prevalence and the likelihood of accessing ASD services in racial/ethnic minority and disadvantaged groups in England.

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Brief Report: Participation of Black and African-American Families in Autism Research

Cited by 46 publications

References 18 publications

“It's Not Just in My Head, and It's Not Just Irrelevant”: Autistic Negotiations of Menopausal Transitions

“It's Not Just in My Head, and It's Not Just Irrelevant”: Autistic Negotiations of Menopausal Transitions

Considerations in implementing evidence-based early autism spectrum disorder interventions in community settings

Association of Race/Ethnicity and Social Disadvantage With Autism Prevalence in 7 Million School Children in England

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