Objective-Early diagnosis of children with autism spectrum disorders (ASD) is critical but often delayed until school age. Few studies have identified factors that may delay diagnosis. This study attempted to identify these factors among a community sample of children with ASD.Methods-Survey data were collected in Pennsylvania from 969 caregivers of children who had ASD and were younger than 21 years regarding their service experiences. Linear regression was used to identify clinical and demographic characteristics associated with age of diagnosis.Results-The average age of diagnosis was 3.1 years for children with autistic disorder, 3.9 years for pervasive developmental disorder not otherwise specified, and 7.2 years for Asperger's disorder. The average age of diagnosis increased 0.2 years for each year of age. Rural children received a diagnosis 0.4 years later than urban children. Near-poor children received a diagnosis 0.9 years later than those with incomes >100% above the poverty level. Children with severe language deficits received a diagnosis an average of 1.2 years earlier than other children. Hand flapping, toe walking, and sustained odd play were associated with a decrease in the age of diagnosis, whereas oversensitivity to pain and hearing impairment were associated with an increase. Children who had 4 or more primary care physicians before diagnosis received a diagnosis 0.5 years later than other children, whereas those whose pediatricians referred them to a specialist received a diagnosis 0.3 years sooner.Conclusion-These findings suggest improvements over time in decreasing the age at which children with ASD, especially higher functioning children, receive a diagnosis. They also suggest a lack of resources in rural areas and for near-poor families and the importance of continuous pediatric care and specialty referrals. That only certain ASD-related behaviors, some of which are not required to satisfy diagnostic criteria, decreased the age of diagnosis suggests the importance of continued physician education.Early diagnosis of autism spectrum disorders (ASD) is critical for a number of reasons, 1, 2 perhaps most important because interventions to improve the functioning of children with ASD may be more effective with younger children.3 -6 Evidence suggests that early treatment optimizes long-term prognosis, 7 and treatment yields diminishing returns as children get older. 8 Several studies have estimated that the gains in functioning associated with early treatment will result in considerable cost savings to both families of children with ASD and the systems in which they are served. [9][10][11]
Older primary care patients are more likely to accept collaborative mental health treatment within primary care than in mental health/substance abuse clinics. These results suggest that integrated service arrangements improve access to mental health and substance abuse services for older adults who underuse these services.
For older adults receiving long-term services and supports (LTSS), health-related quality of life (HRQoL) has emerged as a critical construct to examine because of its focus on components of well-being, which are affected by progressive changes in health status, health care, and social support. HRQoL is a health-focused quality of life (QOL) concept that encompasses aspects of QOL that affect health such as function, physical, and emotional health. Examining existing theoretical constructs and indicators of HRQoL among LTSS recipients led us to posit a revised conceptual framework for studying HRQoL among LTSS recipients. We adapted the Wilson and Cleary HRQoL model by expanding function to specifically include cognition, adding behavior and LTSS environmental characteristics in order to create a more robust HRQoL conceptual framework for older adults receiving LTSS. This refined conceptual model allows for the measurement of a mix of structural, process, and outcome measures. Continued development of a multidimensional conceptual framework with specific HRQoL measures that account for the unique characteristics of older adults receiving LTSS will contribute significantly to LTSS research, policy, and planning efforts.
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