Needs assessment in unmet healthcare and family support services: A survey of caregivers of children and youth with autism spectrum disorder in Delaware

2021 ◽  
Author(s):  
Sudha Srinivasan ◽  
Annalisa Ekbladh ◽  
Brian Freedman ◽  
Anjana Bhat
Keyword(s):  
Autism Spectrum Disorder ◽  
Needs Assessment ◽  
Family Support ◽  
Support Services ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Children And Youth ◽  
Family Support Services

Listening to Bedouin fathers of children with autism spectrum disorder

2018 ◽  
Vol 56 (2) ◽  
pp. 345-358 ◽  
Author(s):  
Iris Manor-Binyamini
Keyword(s):  
Autism Spectrum Disorder ◽  
Support Services ◽  
Cultural Context ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Structured Interviews ◽  
Raising Children ◽  
Cultural Perspectives ◽  
Children With Asd

Although children across the world experience autism spectrum disorder (ASD), most research on ASD has been conducted using Western cultural perspectives and has focused primarily on mothers, leaving significant gaps in the literature. This study aimed to address these gaps by exploring the experiences of fathers raising children with ASD in a Bedouin community. To this end, a sample of 19 fathers of children (aged 6–15 years) with ASD living in recognized and unrecognized Bedouin settlements in the Negev participated in ethnographic, semi-structured interviews designed to investigate their experiences with raising a child with ASD in their community. Two major themes emerged: the challenges that Bedouin fathers of children with ASD face, and the influence of socio-demographic and cultural characteristics on their experience. Findings reflect the complex experiences of fathers raising children with ASD in the Bedouin community, stemming from their socio-cultural context and the limited knowledge and support services that are available in the community for these children. This article concludes with recommendations on how to enhance professional sensitivity and provide more culturally tailored services for parents of children with ASD.

scholarly journals Indigenous Australians with autism: A scoping review

Autism ◽  
2020 ◽  
Vol 24 (5) ◽  
pp. 1031-1046 ◽  
Author(s):  
Benjamin Bailey ◽  
Joanne Arciuli
Keyword(s):  
Autism Spectrum Disorder ◽  
Support Services ◽  
Torres Strait Islander ◽  
Service Providers ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Indigenous Australians ◽  
Torres Strait Islander People ◽  
Provider Perspectives ◽  
Torres Strait

Aboriginal and Torres Strait Islander people with autism spectrum disorder, used interchangeably with the term autism, are among the most marginalised people in Australian society. This review maps out existing and emerging themes in the research involving Indigenous Australians with autism based on a search of the peer-reviewed and grey literature. Our search identified 1457 potentially relevant publications. Of these, 19 publications met our inclusion criteria and focused on autism spectrum disorder diagnosis and prevalence, as well as carer and service provider perspectives on autism, and autism support services for Indigenous Australians. We were able to access 17 publications: 12 journal articles, 3 conference presentations, 1 resource booklet and 1 dissertation. Findings suggest similar prevalence rates for autism among Indigenous and non-Indigenous Australians, although some Aboriginal and Torres Strait Islander people with autism may not receive a diagnosis or may be misdiagnosed. Research on the perspectives of Aboriginal and Torres Strait Islander carers and Indigenous and non-Indigenous service providers is discussed in relation to Indigenous perspectives on autism, as well as barriers and strategies to improve access to diagnosis and support services. Although not the focus of our review, we briefly mention studies of Indigenous people with autism in countries other than Australia. Lay Abstract Aboriginal and Torres Strait Islander people with developmental disabilities such as autism are among the most marginalised people in Australian society. We reviewed research involving Indigenous Australians with autism based on a search of the peer-reviewed and grey literature. Our search identified 1457 potentially relevant publications. Of these, 19 publications were in line with our main areas of inquiry: autism spectrum disorder diagnosis and prevalence, carer and service provider perspectives on autism, and autism support services. These included 12 journal publications, 3 conference presentations, 1 resource booklet and 1 thesis dissertation. Findings suggest similar prevalence rates for autism among Indigenous and non-Indigenous Australians, although some Aboriginal and Torres Strait Islander people with autism may not receive a diagnosis or may be misdiagnosed. We also discuss research on the perspectives of Aboriginal and Torres Strait Islander carers and Indigenous and non-Indigenous service providers, as well as barriers and strategies for improving access to diagnosis and support services.

Examining the relationship between parent physical activity support behaviour and physical activity among children and youth with autism spectrum disorder

Autism ◽  
2020 ◽  
Vol 24 (7) ◽  
pp. 1783-1794 ◽  
Author(s):  
Denver M Brown ◽  
Kelly P Arbour-Nicitopoulos ◽  
Kathleen A Martin Ginis ◽  
Amy E Latimer-Cheung ◽  
Rebecca L Bassett-Gunter
Keyword(s):  
Physical Activity ◽  
Autism Spectrum Disorder ◽  
Physical Activity Behaviour ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Children And Youth ◽  
Child Physical Activity ◽  
Behavioural Regulation ◽  
The Relationship ◽  
Activity Behaviour

Children and youth with autism spectrum disorder engage in less physical activity than neurotypically developing peers. This may be due to factors associated with autism spectrum disorder at the individual and environmental level that can make physical activity participation more challenging. Parent support is a known determinant of physical activity among children and youth; however, limited research has explored the relationship between parent physical activity support behaviour and child physical activity behaviour within the autism spectrum disorder population. Guided by the multi-process action control framework, this study examined the relationship between parent physical activity support behaviour and physical activity levels of children and youth with autism spectrum disorder. Parents ( n = 201) of school-aged children and youth with autism spectrum disorder completed measures of parent physical activity support (intentions, behavioural regulation, support behaviour), as well as their child’s physical activity behaviour. Congruent with the multi-process action control model, intentions to provide physical activity support were significantly associated with parent physical activity support behaviour. Behavioural regulation of physical activity support mediated this relationship, which in turn significantly predicted child physical activity behaviour. Findings suggest parents play an instrumental role in the physical activity behaviour of children and youth with autism spectrum disorder. Family-level interventions targeting parents’ behavioural regulation strategies to provide physical activity support may be an effective strategy to increase physical activity in children and youth with autism spectrum disorder. Lay abstract Children and youth with autism spectrum disorder engage in less physical activity than neurotypically developing peers. This may be due to factors associated with autism spectrum disorder at the individual and environmental level that can make physical activity participation more challenging. Parent support is a known determinant of physical activity among children and youth; however, limited research has explored the relationship between parent physical activity support behaviour and child physical activity behaviour within the autism spectrum disorder population. The purpose of this study was to examine the relationship between parent physical activity support behaviour and physical activity levels of children and youth with autism spectrum disorder. Parents ( n = 201) of school-aged children and youth with autism spectrum disorder completed measures of parent physical activity support (intentions, behavioural regulation, support behaviour), as well as their child’s physical activity behaviour. The results showed that parent’s intentions to provide physical activity support were associated with their support behaviour for their child’s physical activity (e.g. encouragement, being active together). Parents who followed through with their intentions to provide support reported using behavioural regulation strategies such as goal setting and planning more often. Finally, the results showed parent physical activity support behaviour was positively associated with child physical activity behaviour. Findings suggest parents play an instrumental role in the physical activity behaviour of children and youth with autism spectrum disorder. Family-level interventions targeting parents’ behavioural regulation strategies to provide physical activity support may be an effective strategy to increase physical activity in children and youth with autism spectrum disorder.

Accommodations and support services preferred by college students with autism spectrum disorder

Autism ◽  
2018 ◽  
Vol 23 (3) ◽  
pp. 574-583 ◽  
Author(s):  
Amy L Accardo ◽  
S Jay Kuder ◽  
John Woodruff
Keyword(s):  
College Students ◽  
Autism Spectrum Disorder ◽  
Support Services ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Counseling Services ◽  
Faculty Mentor ◽  
Sequential Mixed Methods ◽  
Academic Supports ◽  
Students With Autism

This 2-year study investigated the accommodations and support services preferred by college students with autism spectrum disorder using sequential mixed methods non-experimental survey and semi-structured follow-up interviews. Students with autism spectrum disorder reported using both academic and non-academic supports with frequency (e.g. extended time on exams, transition program), using academic supports in line with other disability populations, and using non-academic supports connecting them one-to-one with a faculty member or coach as preferred (e.g. academic coach, counselor, faculty mentor). Findings suggest a need for university disability service centers, counseling services, and faculty to work together to develop systematic support systems for college students with autism spectrum disorder.

Evaluation of employment-support services for adults with autism spectrum disorder

Autism ◽  
2017 ◽  
Vol 22 (6) ◽  
pp. 693-702 ◽  
Author(s):  
David B Nicholas ◽  
Lonnie Zwaigenbaum ◽  
Jennifer Zwicker ◽  
Margaret E Clarke ◽  
Ramesh Lamsal ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Support Services ◽  
Online Survey ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Support Personnel ◽  
Adults With Autism ◽  
Beneficial Impact ◽  
Employment Support ◽  
Vocational Support

The employment rate among persons with autism spectrum disorder has been noted as unacceptably low. Employment-support services are increasingly linked to the potential for favorable job outcomes, yet little is known about employment-support practices and the outcome of these interventions. This mixed-methods study examined employment-support resources for persons with autism spectrum disorder. An online survey was completed by 137 senior clinicians or administrators in employment-support programs in Canada. Additionally, 122 follow-up interviews were conducted with individuals with autism spectrum disorder (n = 71) and their parents/caregivers (n = 51). Findings indicate that the quality and beneficial impact of employment-support services for adults with autism spectrum disorder may be more favorably perceived by employment-support personnel than by individuals with autism spectrum disorder and their families. Furthermore, employment-support personnel were more disparaging about autism spectrum disorder vocational support capacity within their community, compared to their own programs. Individuals with autism spectrum disorder and their families seek services that support both accessing and retaining employment. Capacity-building in employment support for youth and adults with autism spectrum disorder is recommended, based on a reported insufficiency of, and a lack of evidence guiding, existing services. Program recommendations and an emerging model for integrated vocational support in autism spectrum disorder are offered.

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