The Associations Between Clinical, Social, Financial Factors and Unmet Needs of Autistic Adults: Results from an Observational Study

Jose, Caroline; George-Zwicker, Patricia; Bouma, Aaron; Tardif, Louise; Pugsley, Darlene; Bélanger, Mathieu; Robichaud, Marc; Gaudet, Jeffrey

doi:10.1089/aut.2020.0027

Cited by 5 publications

(7 citation statements)

References 45 publications

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“…Other higher-rated barriers in this study included services not being available, a waiting list for services (or for a waiver), and the location of services. Barriers related to service availability and location are included in most existing barrier measures (e.g., NLTS2, 2002; Platos & Pisula, 2019) and have been commonly reported among autistic youth and adults (e.g., Dudley et al, 2019; Jose et al, 2021; Taylor & Henninger, 2015). Although waiting lists are often reported in qualitative interviews with caregivers and providers of services to autistic youth (e.g., Anderson et al, 2018; Pickard & Ingersoll, 2016), only Lai and Weiss (2017) included a “waitlist” item in their measure.…”

Section: Discussionmentioning

confidence: 99%

“…However, this relationship was significant only among elementary-school-aged children with autism, not among older youth or adults. Second, a more recent Canadian study found that autistic adults who encountered barriers to accessing services had more unmet health and social service needs than did those who encountered no barriers (Jose et al, 2021).…”

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confidence: 99%

“…Service barriers have been a central focus of just a handful of studies (Dudley et al, 2019; Pickard & Ingersoll, 2016; Platos & Pisula, 2019; Vogan et al, 2017). A few additional studies (Jose et al, 2021; Lai & Weiss, 2017) have examined barriers as a focal predictor of service receipt. Descriptive data on barriers to service can also be extracted from a number of studies which—while focused primarily on service use and unmet service needs—also measured and reported barriers to service (e.g., Kuhlthau et al, 2016; Taylor & Henninger, 2015).…”

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confidence: 99%

“…For example, caregivers generally affirm services as being unavailable or too far away (Dudley et al, 2019; Taylor & Henninger, 2015). Information about services is reportedly difficult to locate (Havlicek et al, 2016; Vogan et al, 2017), and services are often described as costly, difficult to navigate, hard to qualify for, and/or not offered at convenient times (Jose et al, 2021; Pickard & Ingersoll, 2016; Platos & Pisula, 2019; Taylor & Henninger, 2015). Caregivers commonly report insufficient provider knowledge of autism (Kuhlthau et al, 2016) and some families relate negative experiences with providers (Vogan et al, 2017).…”

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confidence: 99%

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Barriers to service and unmet need among autistic adolescents and young adults

Ishler

Berg

Olgac

et al. 2023

Autism

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Many of the nearly six million autistic adolescents and adults in the United States require support to navigate daily life. Family members often provide the first line of support for autistic youth by providing care and coordinating services. Although considerable research has examined the perspectives of family members caring for young autistic children, comparatively less has focused on those caring for transition-age youth who often struggle to access needed services as they leave child-serving systems of care. This study examined caregiver-reported barriers to service for 174 adolescents and young adults on the spectrum (ages 16–30) and the association between such barriers and unmet service needs. Exploratory factor analysis suggested two service barrier domains: access (e.g., cost) and quality (e.g., providers not trained). Regression models indicated that caregivers whose youth were diagnosed at older ages perceived both greater access and quality barriers. Male caregivers reported fewer access barriers, and those who perceived greater caregiver burdens (daily life disruptions, financial difficulties, and worries) reported more access barriers. Caregivers whose youth lived with them reported fewer quality barriers. Greater access–but not quality–service barriers predicted greater unmet service needs. Findings have implications for service delivery to autistic youth and specific directions for future research. Lay Abstract Prior studies have described the roadblocks, or barriers, to needed services experienced by families with young autistic children, but less research has focused on those faced by autistic adolescents and young adults. In this study, we wished to understand the barriers to service experienced by autistic adolescents and young adults and their families. We surveyed 174 caregivers of autistic youth between 16 to 30 years old. We found that caregivers who felt more caregiving burden had more difficulty accessing services for their youth. Specifically, caregivers who felt more strongly that their daily lives had been disrupted, felt more financial strain, and worried more about their youth well-being experienced more roadblocks to getting services for the youth. Male caregivers also reported fewer difficulties related to service access. Importantly, the older the youth was when they had been diagnosed with autism, the more service barriers their caregivers reported. We did not see any differences in the level of barriers experienced by youth who lived in urban versus suburban settings, or between white and non-white families. However, when youth lived with their caregivers (rather than, for example, in a group home), fewer quality-related barriers to services were reported. Finally, greater access (but not quality) barriers were linked to youth having more unmet service needs. These findings can help to reduce the barriers to service experienced by autistic adolescents and young adults and their families.

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Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

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confidence: 99%

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confidence: 99%

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Barriers to service and unmet need among autistic adolescents and young adults

Ishler

Berg

Olgac

et al. 2023

Autism

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“…primary care and outpatient mental healthcare) (Vogan, Lake, Tint, Weiss, & Lunsky, 2017), the care that they receive in these contexts may be inadequate to meet their needs and to prevent frequent use of tertiary healthcare services. Indeed, autistic adults have frequently reported unmet healthcare needs (Jose et al, 2021; Schott, Nonnemacher, & Shea, 2021) in myriad settings such as primary care (Duker, Kim, Pomponio, Mosqueda, & Pfeiffer, 2019; Nicolaidis et al, 2015) and secondary care (i.e. specialist services; Camm-Crosbie, Bradley, Shaw, Baron-Cohen, & Cassidy, 2019).…”

Section: Discussionmentioning

confidence: 99%

Healthcare service use patterns among autistic adults: A systematic review with narrative synthesis

Gilmore

Krantz

Weaver

et al. 2021

Autism

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Autistic adults often experience barriers to healthcare that can cause their healthcare service use to be unique from other populations. We conducted a systematic review to gather the most recent evidence about how often autistic adults use five important healthcare services (the emergency department, hospitalization, outpatient mental health, preventive services, and primary care) compared to populations of non-autistic adults. We searched six electronic research databases for articles. Our search strategy identified N = 2964 unique articles. Ultimately, we included N = 16 articles in our review. Most included studies (N = 13) were high-quality level 3a studies that compared autistic adults’ service use to a non-autistic population comparison group (N = 11), and examined emergency department use (N = 12). Autistic adults most often had equal or higher use of services than population comparison groups across all healthcare services we examined. Although autistic adults had greater use of primary care and preventive services than comparison groups, frequent emergency department visits and hospitalizations may reflect that these services are not adequately meeting autistic adults’ needs. Future research should identify targets for improving autistic adults’ access to and use of primary care and preventive services, which may ultimately reduce frequent use of the emergency department and hospitalizations. Lay abstract Autistic adults often have complex healthcare needs due to factors like having other health conditions, sensory sensitivities, and limited access to healthcare providers who are trained to provide care for them. All these factors may influence the healthcare services that autistic adults use. In this review, we searched six electronic research databases to gather the most recent evidence about how often autistic adults use five important healthcare services (the emergency department, hospitalization, outpatient mental health, preventive services, and primary care) compared to populations of non-autistic adults. A total of 16 articles were ultimately included in this review. Most articles found that autistic adults had equal or higher use of healthcare services than non-autistic adults. Autistic adults frequently used the emergency department and hospital. This may indicate that routine outpatient care in the community is not meeting their needs. Our findings show the importance of improving care at this level for autistic adults to reduce overuse of the emergency department (in this article referred to as ED) and hospital.

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Representativeness of autistic samples in studies recruiting through social media

et al. 2022

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Survey-based research with recruitment through online channels is a convenient way to obtain large samples and has recently been increasingly used in autism research. However, sampling from online channels may be associated with a high risk of sampling bias causing findings not to be generalizable to the autism population. Here we examined autism studies that have sampled on social media for markers of sampling bias. Most samples showed one or more indicators of sampling bias, in the form of reversed sex ratio, higher employment rates, higher education level, lower fraction of individuals with intellectual disability, and later age of diagnosis than would be expected when comparing with for example population study results from published research. Findings from many of the included studies are therefore difficult to generalize to the broader autism population. Suggestions for how research strategies may be adapted to address some of the problems are discussed. Lay SummaryOnline surveys offer a convenient way to recruit large numbers of participants for autism research. However, the resulting samples may not fully reflect the autism population. Here we investigated the samples of 36 autism studies that recruited participants online and found that the demographic composition tended to deviate from what has been reported about the autism population in previous research. The results may thus not be generalizable to autism in general.

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The Associations Between Clinical, Social, Financial Factors and Unmet Needs of Autistic Adults: Results from an Observational Study

Cited by 5 publications

References 45 publications

Barriers to service and unmet need among autistic adolescents and young adults

Barriers to service and unmet need among autistic adolescents and young adults

Healthcare service use patterns among autistic adults: A systematic review with narrative synthesis

Representativeness of autistic samples in studies recruiting through social media

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