Disparities in Diagnosis and Service Access for Minority Children with ASD in the United States

Zeleke, Waganesh A.; Hughes, Tammy L.; Drozda, Natalie

doi:10.1007/s10803-019-04131-9

Cited by 42 publications

(21 citation statements)

References 27 publications

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“…For example, Gona et al (2016) identified that parents of children on the autism spectrum in Kenya reported difficulties in accessing appropriate support and experienced negative stigma towards their child. Zeleke et al (2019) also noted barriers to timely and accurate early diagnosis and support for young children on the autism spectrum from racial ethnic minorities, low income groups and/or non-English-speaking backgrounds within the United States. With different healthcare and educational access and practices for individuals on the autism spectrum across the world (Davenport et al, 2018; Hsia et al, 2014), we should not assume that the same priorities for autism research will be relevant and highly endorsed across every country, or even for every racial group or ethnic community within countries.…”

Section: Discussionmentioning

confidence: 99%

Research priorities of the autism community: A systematic review of key stakeholder perspectives

Roche

Adams

Clark

2020

Autism

141

107

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In recent years, a shift in focus has seen researchers seek to identify the priorities and preferences of key stakeholders to shape the direction of future research for those on the autism spectrum. The process of synthesising the views, knowledge and expertise of key stakeholders with either a lived or shared experience of autism is invaluable and can inform future research to ensure that it is meaningful and has the greatest impact. A number of studies have reported on the research priorities of groups within the autism community, but to date, these studies stand alone and priorities have not been considered collectively. This systematic review identified seven studies that reported on key stakeholders’ priorities for autism research. Studies were synthesised according to (a) the target participant group and method of recruitment, (b) the methodology used to elucidate the viewpoint of stakeholders, (c) the country of stakeholders and (d) commonly identified priorities. Common features across studies note the importance of prioritising initiatives that will result in real-world changes in the lives of the autism community and more research across the lifespan. There is an identified need for more diverse stakeholder voices to influence the identification of priorities for future research foci. Continued inclusion of the autistic and autism communities in priority-setting research is imperative for achieving significant outcomes in autism research and to progress the field in an effective and socio-ethical way. Lay abstract It has become very important in autism research to ask the autistic community about what kinds of research they think should be done in order to improve the lives of people with autism. Many studies have reported on research goals from people within the autism community, such as parents of people on the autism spectrum, and practitioners and clinicians who support people on the autism spectrum. So far, the research goals from all of these studies have not been considered together, which is important so that all autism research can be working towards the same goals. We reviewed seven studies that looked at the priorities for autism research from key people within the autism community. Each of the reviewed studies are described according to (a) the types of people involved in the study, (b) the way the research goals from each group of people were identified, (c) the country where they were from and (d) the most common research goals from across all of the studies. Within these seven studies, research that will lead to real-world changes in the daily lives of the autism community and a greater focus on skill training for people with autism across their lives were found to be very important. From this review, we found that it is also very important to include a range of different people from the autism community when deciding what autism research goals should be focused on so that future research can be more helpful for the autism community.

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Section: Discussionmentioning

confidence: 99%

Research priorities of the autism community: A systematic review of key stakeholder perspectives

Roche

Adams

Clark

2020

Autism

141

107

View full text Add to dashboard Cite

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“…The affordability of care was rarely discussed explicitly in the reviewed papers, but other indirect indicators of living in poverty were mentioned in relation to raising a child with autism, particularly small living conditions and accessing 'nice programmes'. Studies have reported that minorities receive different and less frequent services (Jarquin et al 2011) and not a large variety of services being unsatisfied with health care services (Zeleke et al 2019). Social inequalities were a common feature in the experiences of the parents for gaining access to services for early diagnosis and support services.…”

Section: Multilanguagementioning

confidence: 99%

Perceptions, Experiences, and Needs of Parents of Culturally and Linguistically Diverse Children with Autism: a Scoping Review

Papoudi

Jørgensen

Guldberg

et al. 2020

Rev J Autism Dev Disord

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A scoping review of studies carried out in the UK and the USA was conducted to explore the perceptions, experiences, and needs of culturally and linguistically diverse families of children with autism. Overall, 32 articles met the inclusion criteria, 25 studies were conducted in the USA and 7 studies in the UK. Four themes emerged including (a) knowledge and beliefs about autism and their impact on the family; (b) autism and family life; (c) family experiences of accessing services and support, and parents' needs; and (d) multilanguage. Findings highlighted that family perceptions of autism are influenced by an often-reported lack of knowledge; experiences include social stigma as well as difficulties in having access to services. Needs indicate the development of culturally sensitive interventions, information in multiple languages, and parent-professional collaboration. Implications for research, policy, and practice are included.

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“…Children of color and those from less educated or lower-income families are referred for evaluation, diagnosed with ASD, and provided services later and less consistently (Fountain et al, 2011; Irvin et al, 2012; Liptak et al, 2008; Mandell et al, 2005; Thomas et al, 2007; Zuckerman, Mattox, et al, 2014). Their families report having less information about and more problems obtaining specialty care, fewer support services to connect to care, and less satisfaction with EI services; additional barriers include community stigma and differing beliefs regarding mental health and disability, provider dismissal of parental concerns, and parental distrust of providers (Liptak et al, 2008; Thomas et al, 2007; Zeleke et al, 2019; Zuckerman et al, 2015, 2017; Zuckerman, Mattox, et al, 2014; Zuckerman, Sinche, Cobian, et al, 2014; Zuckerman, Sinche, Mejia, et al, 2014; Zwaigenbaum, Bauman, Stone, et al, 2015).…”

Section: Introductionmentioning

confidence: 99%

Family navigation to increase evaluation for autism spectrum disorder in toddlers: Screening and Linkage to Services for Autism pragmatic randomized trial

DiGuiseppi

Rosenberg

Tomcho

et al. 2020

Autism

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The Screening and Linkage to Services for Autism pragmatic trial examined the effect of family navigation on referral and evaluation for autism spectrum disorder in an urban healthcare system serving low-income families. Children aged 16–30 months with initial scores ⩾3 on the Modified Checklist for Autism in Toddlers–Revised with Follow-up (M-CHAT-R/F) were randomized to usual care ( n = 133) or navigation if indicated ( n = 142). Bilingual, bicultural autism family navigators offered navigation to intervention-group families if the completed M-CHAT-R/F indicated the need for autism spectrum disorder diagnostic evaluation. Autism family navigators also assisted families to arrange for completion of the M-CHAT-R/F interview if not done, and then offered navigation if indicated. Of 49 families for whom navigation was indicated, 45% received navigation, including care coordination, education, and practical support. In intention-to-treat analyses, the intervention did not increase referrals for evaluation but more than doubled completed autism spectrum disorder diagnostic evaluations. Intervention children were also more likely to complete the M-CHAT-R/F interview with fidelity. Research is needed to identify effective methods to improve uptake of family navigation. Family navigation may be an important tool for reducing systemic inequalities in the early identification and treatment of young children with autism spectrum disorder ( ClinicalTrials.gov , https://clinicaltrials.gov/ ; NCT02374541). Lay abstract Young children with autism spectrum disorder can benefit from early detection and intervention to moderate autism spectrum disorder’s effect on their development. Routine screening with standardized instruments facilitates early identification. However, many screen-positive children do not receive referrals for evaluation, complete diagnostic evaluations, or engage in services. This is especially true for children of color and those from less educated or low-income families. The Screening and Linkage to Services for Autism trial evaluated the effect of family navigation on referral and evaluation for autism spectrum disorder in screen-positive toddlers. The trial was conducted in an urban, low-income population. It was designed to test “real-world” implementation of family navigation. We randomly assigned 275 children aged 16–30 months with an initial positive autism spectrum disorder screen to receive navigation if indicated or usual care. Navigation increased the number of at-risk toddlers who were evaluated for autism spectrum disorder. It also improved the quality of autism spectrum disorder screening in primary care clinics. However, many children failed to receive indicated referrals for evaluation. Navigation did not improve referral rates. Furthermore, nearly half of families who were potentially eligible for navigation could not be contacted. Other ways of structuring the navigation program may be necessary to improve families’ access to and acceptance of navigation, especially in the setting of financial, cultural, and linguistic barriers. Our trial nevertheless showed that family navigation may be an important tool for reducing systemic inequalities in the early identification and treatment of young children with autism spectrum disorder.

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Disparities in Diagnosis and Service Access for Minority Children with ASD in the United States

Cited by 42 publications

References 27 publications

Research priorities of the autism community: A systematic review of key stakeholder perspectives

Research priorities of the autism community: A systematic review of key stakeholder perspectives

Perceptions, Experiences, and Needs of Parents of Culturally and Linguistically Diverse Children with Autism: a Scoping Review

Family navigation to increase evaluation for autism spectrum disorder in toddlers: Screening and Linkage to Services for Autism pragmatic randomized trial

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