Autism : the international journal of research and practice
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Increasing demand for autism services is straining service systems. Tailoring services to best meet families' needs could improve their quality of life and decrease burden on the system. We explored overall, best, and worst met service needs, and predictors of those needs, for families of children with autism spectrum disorders. ⋯ Findings can help professionals, funders, and policy-makers tailor services to best meet families' needs.
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Youth with autism spectrum disorder are a vulnerable, often poorly understood patient group, who may experience periodic and chronic health challenges, in addition to their primary developmental social and communication problems. Developmental and behavioural challenges can complicate management of acute health-care needs. To date, there is an absence of empirical research exploring the hospital experiences of children and youth with autism spectrum disorder, their families and their health-care providers. ⋯ Problems identified included communication and sensory challenges, and the degree of flexibility of health-care providers and the hospital organization. Supportive health-care providers were those who acknowledged parents as experts, inquired about the requirements of patients with autism spectrum disorder and implemented strategies that accommodated the unique clinical presentation of the individual patient. These recommendations have wide-reaching utility for hospital and health-care practices involving this patient group.
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Epilepsy is common in children with autism spectrum disorder (ASD) but little is known about how seizures impact the autism phenotype. The association between epilepsy and autism symptoms and associated maladaptive behaviors was examined in 2,645 children with ASD, of whom 139 had epilepsy, from the Simons Simplex Collection. Children with ASD and epilepsy had significantly more autism symptoms and maladaptive behaviors than children without epilepsy. ⋯ This is the largest study to date comparing the autism phenotype in children with ASD with and without epilepsy. Children with ASD and epilepsy showed greater impairment than children without epilepsy, which was mostly explained by the lower IQ of the epilepsy group. These findings have important clinical implications for patients with ASD.
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Many adults with autism spectrum disorders have complex communication needs and may benefit from the use of augmentative and alternative communication. However, there is a lack of research examining the specific communication needs of these adults, let alone the outcomes of interventions aimed at addressing them. The aim of this study was to explore the views and experiences of support workers and family members regarding the outcomes of providing low-technology communication aids to adults with autism spectrum disorders. ⋯ Using semi-structured, in-depth interviews and following thematic analysis, the results revealed strong support for, and the potential benefits of, augmentative and alternative communication for both adults with autism spectrum disorders and their communication partners. The results also revealed inconsistencies in the actions taken to support the use of the prescribed augmentative and alternative communication systems, pointing to the clinical need to address common barriers to the provision of augmentative and alternative communication support. These barriers include organisational practices and limitations in the knowledge and skills of key stakeholders, as well as problematic attitudes.
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This cross-sectional study examined perceived access to services, quality of care, and family impact reported by caregivers of children aged 3-17 years with autism spectrum disorders, as compared to caregivers of children with other developmental disabilities and other mental health conditions. The 2009-2010 National Survey of Children with Special Health Care Needs was utilized to examine the association between child's special needs condition and three outcomes (N = 18,136): access to services (difficulty using services, difficulty getting referrals, lack of source of care, and inadequate insurance coverage), quality of care (lack of care coordination, lack of shared decision making, and no routine screening), and family impact (financial, employment, and time-related burden). Multivariate logistic regressions were performed to compare caregivers of children with autism spectrum disorders to caregivers of children with developmental disabilities (cerebral palsy, Down syndrome, developmental delay, or intellectual disability), mental health conditions (attention deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or depression), or both developmental disabilities and mental health conditions. Caregivers of children with autism spectrum disorders were significantly more likely to report difficulty using services, lack of source of care, inadequate insurance coverage, lack of shared decision making and care coordination, and adverse family impact as compared to caregivers of children with developmental disabilities, mental health conditions, or both.