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      Barriers to healthcare for people on the autism spectrum

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          Abstract

          Purpose

          – Adults on the autism spectrum experience difficulties in receiving health care, and health care providers face difficulties in offering health care to adults on the autism spectrum. The purpose of this paper is first, to assess the various difficulties and second, to provide strategies to overcome them.

          Design/methodology/approach

          – In this qualitative research project, current barriers and facilitators to health care services were sampled from a collaboration of autistic self-advocates and autism professionals in Berlin, Germany. The findings were complemented by a review of practical guidelines and research about the service accessibility of patients on the autism spectrum.

          Findings

          – A comprehensive list of barriers to health care was compiled and structured according to various aspects, such as “making appointments”, “waiting area”, “communication”, and “examination”. Strategies considering the perceptual and communicative peculiarities of autism were found to improve access to health care for autistic adults.

          Practical implications

          – Providing access to the health care system may improve the diagnosis and treatment of mental and somatic illnesses, and thereby, the health status and quality of life for people on the autism spectrum. This recognition of the needs of adults on the autism spectrum may serve as a model for other areas in society, such as education and employment.

          Originality/value

          – Data acquisition in this project is of special value because it resulted from collaboration between an autistic self-advocacy organization and professionals working in the field of intellectual developmental disabilities considering the experiences of autistic adults in the entire range of intellectual functioning.

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          Most cited references 18

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          Executive dysfunction in autism☆

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            The lifetime distribution of the incremental societal costs of autism.

             Michael Ganz (2007)
            To describe the age-specific and lifetime incremental societal costs of autism in the United States. Estimates of use and costs of direct medical and nonmedical care were obtained from a literature review and database analysis. A human capital approach was used to estimate lost productivity. These costs were projected across the life span, and discounted incremental age-specific costs were computed. United States. Hypothetical incident autism cohort born in 2000 and diagnosed in 2003. Discounted per capita incremental societal costs. The lifetime per capita incremental societal cost of autism is $3.2 million. Lost productivity and adult care are the largest components of costs. The distribution of costs over the life span varies by cost category. Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood. The substantial costs resulting from adult care and lost productivity of both individuals with autism and their parents have important implications for those aging members of the baby boom generation approaching retirement, including large financial burdens affecting not only those families but also potentially society in general. These results may imply that physicians and other care professionals should consider recommending that parents of children with autism seek financial counseling to help plan for the transition into adulthood.
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              Seizure disorders in autism.

              Several reports have suggested that autistic individuals are at greater risk for developing seizure disorders, particularly in adolescence. In this study the frequency of seizures in a series of 192 autistic individuals was examined; 21% of cases had exhibited a seizure disorder. Seizure disorders were more common among individuals with lower IQ. Age specific incidence revealed a 3- to 22-fold increase in risk for seizure relative to the normal population. In contrast to previous studies, risk for developing seizures was highest during early childhood although it was also elevated during early adolescence.
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                Author and article information

                Contributors
                Journal
                AIA
                10.1108/AIA
                Advances in Autism
                Emerald Publishing
                2056-3868
                4 January 2016
                4 January 2016
                : 2
                : 1
                : 2-11
                Affiliations
                Aspies e.V, Berlin, Germany
                Department of Psychiatry, Evangelisches Krankenhaus Königin Elisabeth Herzberge, Berlin, Germany
                Article
                AIA-10-2015-0020.pdf
                10.1108/AIA-10-2015-0020
                © Emerald Group Publishing Limited
                Product
                Categories
                Articles
                Research paper
                Health & social care
                Learning & intellectual disabilities
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