Measuring the Parental, Service and Cost Impacts of Children with Autistic Spectrum Disorder: A Pilot Study

Centre for the Economics of Mental Health, Health Service Research Department, The David Goldberg Centre, Institute of Psychiatry, De Crespigny Park, London SE5 8AF, UK.
Journal of Autism and Developmental Disorders (Impact Factor: 3.34). 09/2003; 33(4):395-402. DOI: 10.1023/A:1025058711465
Source: PubMed


The aim of this study was to carry out a preliminary examination of a research instrument developed specifically to collect cost information for individuals with autistic spectrum disorder. There is very little cost information on children or adults with autism or autism-related disorder, and no study appears to have carried out a specific cost collection in this area. Although some global cost estimates can be made, little is known about the cost implications of parental burden. By using different techniques to collect indirect costs, the study outlines a functional methodology. Results from this small pilot study point to considerable economic burden for parents and give some indication of the associated costs of autistic spectrum disorder.

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    • "Neurodevelopmental disorders are relatively common and pose a substantial challenge to society (Froehlich et al., 2007; Jarbrink et al., 2003; Kogan et al., 2008; Newton, 2012). For some conditions the diagnosis rates have increased , but the reasons behind these apparent time trends remain largely unknown. "
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    ABSTRACT: Background: Recent studies have reported associations between air pollution exposure and neurodevelopmental disorders in children, but the role of pre- and postnatal exposure has not been elucidated. Aim: We aimed to explore the risk for autism spectrum disorders (ASD) and attention-deficit hyperactivity disorder (ADHD) among children in relation to pre- and postnatal exposure to air pollution from road traffic. Methods: Parents of 3,426 twins born in Stockholm during 1992-2000 were interviewed, when their children were 9 or 12 years old, for symptoms of neurodevelopmental disorders. Residence time-weighted concentrations of particulate matter with a diameter <10 μm (PM10) and nitrogen oxides (NOx) from road traffic were estimated at participants' addresses during pregnancy, the first year, and the ninth year of life using dispersion modeling, controlling for seasonal variation. Multivariate regression models were used to examine the association between air pollution exposure and neurodevelopmental outcomes, adjusting for potential confounding factors. Results: No clear or consistent associations were found between air pollution exposure during any of the three time windows and any of the neurodevelopmental outcomes. For example, a 5-95% difference in exposure to NOx during pregnancy was associated with odds ratios (ORs) of 0.92 (95% confidence interval (CI): 0.44-1.96) and 0.90 (95% CI: 0.58-1.40) for ASD and ADHD respectively. A corresponding range in exposure to PM10 during pregnancy was related to ORs of 1.01 (95% CI: 0.52-1.96) and 1.00 (95% CI: 0.68-1.47) for ASD and ADHD. Conclusions: Our data do not provide support for an association between pre- or postnatal exposure to air pollution from road traffic and neurodevelopmental disorders in children.
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    • "Parents of children with ASD face challenges both at home and in the community. Compared to parents of children without ASD, they are at heightened risk of financial strain (Jarbrink, Fombonne, &amp; Knapp, 2003) and poor physical and mental health (Allik, Larsson, &amp; Smedje, 2006); they are also likely to experience higher divorce rates (Hartley et al., 2010). In the community, they might have to pay out of pocket for services or drive long distances to access treatment facilities (). "
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    ABSTRACT: Autism spectrum disorder (ASD) is a developmental disorder involving abnormal communication, repetitive and restrictive interests, and impaired social functioning. ASD can have a profound impact on family life, including the roles and responsibilities that parents assume. In this meta-synthesis, the authors explore the experiences of parents who care for a child with ASD. We undertook a thematic synthesis to integrate qualitative evidence, searching 10 electronic databases and reviewing 4,148 abstracts. We selected 31 articles for inclusion (involving 160 fathers and 425 mothers) and examined the articles using a constant comparative approach. We identified six themes: pre-diagnosis, diagnosis, family life adjustment, navigating the system, parental empowerment, and moving forward. Our findings can inform the development of programs and services for families; provide insight for health care workers who advocate on behalf of parents; and provide valuable information to parents, particularly those of children newly diagnosed with ASD.
    No preview · Article · Jul 2014 · Qualitative Health Research
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    • "Previous research has found that the costs of autism in childhood are borne primarily by both publicly funded services (health, education, social services) and families (Barrett et al., 2011; Jarbrink et al., 2003). One study estimated that the total costs of supporting children with ASD in the United Kingdom was approximated at £2.7 billion per year, of which 95% was accounted for by services funded by the state with the remaining 5% falling to families (Knapp et al., 2009). "

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