1. Self-Care Behaviors in Children and Youth with Autism Spectrum Disorders in Alabama Beverly A. Mulvihill, PhD 1, Brian F. Geiger, EdD 2, Marcia O’Neal, PhD 2, Alabama Autism Collaborative Group 1 University of Alabama at Birmingham: 1-School of Public Health, Department of Health Care Organization and Policy; 2- School of Education, Center for Educational Accountability Introduction BACKGROUND: The acquisition of adaptive skills, or skills that are necessary to cope with the demands of the daily environment, are critical to individual’s ability to live and function independently. Assessment of adaptive functioning provides information about how well individuals function in their environment. 1 Adaptive behavior is often evaluated in four domains: Communication, Daily Living Skills, Socialization and Motor Skills. Best practice in the assessment of Autism Spectrum Disorders (ASD) recommends an evaluation of adaptive functioning to determine an appropriate diagnosis and treatment plan. 2 These assessments of adaptive functioning more frequently use standardized instruments such as the Vineland Adaptive Behavior Scales 3, but have typically been based on caregiver report. 2 Individual level of adaptive functioning can be the determining factor in whether or to what extent individuals with ASD can function independently. Understanding more about the daily living skills of children and youth with ASD can provide guidance to promote such independence. PURPOSE: The purpose of this study was to determine self-care functioning in a group of children and youth with an Autism Spectrum Disorder (ASD) <1 to 21 years in the state of Alabama. OBJECTIVES: The study had two main objectives: I.To describe the characteristics of a group of children and youth with parent-reported ASD in Alabama, and II.To examine association between child age and ability to perform typical activities of daily living (ADLs). References 1.Liss M, Harel B, Fein D, Allen D, Dunn M, Feinstein C, Morris R, Waterhouse L, Rapin I. Predictors and correlates of adaptive functioning in children with developmental disorders. J Autism Dev Disord. 2001; 31(2): 219-230. 2.Perry A, Flanagan HE, Geier JD, Freeman NL. Brief report: the Vineland behavior scales in young children with autism spectrum disorders at different cognitive levels. J Autism Dev Disord. 2009; 1066-1078. 3. Sparrow SS, Cicchetti DV, Balla DA. Vineland adaptive behavior scales (2 nd ed.) Circle Pines, MN: American Guidance Service, 2005. DATA: The data for this study were part of a larger statewide needs assessment for families affected by Autism Spectrum Disorders (ASD) in the state of Alabama.* The study was conducted by a consortium of Autism experts known as the Alabama Autism Collaborative Group (AACG). Eight community forums and 6 focus groups were held, 171 online and in person written surveys of service providers were collected, 18 key informant interviews were held and written and online questionnaire data were available from 270 caregivers (mostly parents) of individuals with ASD. Data for this study came from the written and online caregiver questionnaires. We restricted our analysis to those families who had a child or youth 21 years or younger (n=240). PARTICIPANTS: About 26% of the respondents reported incomes less than $40,000 per year and 37% said their family income was more than $80,000 annually. About 32% identified as being non-white or Hispanic. Most (77%) were married. Their family member with an ASD was usually male (83%) and the average age was 8.2 years (ranging from less than 1 year to 21 years of age). DATA COLLECTION: A survey tool designed by the AACG was available to families at the community forums and also online. The surveys were available during the fall of 2007 and spring of 2008. Survey Monkey was used to facilitate the online data collection. The data were initially stored at the Center for Educational Accountability at UAB and preliminary analysis was conducted at that Center. DATA ANALYSIS: For this study particular variables were identified related to this group of children and youth and their adaptive skills. Those variables were entered into a separate data set and descriptive and Chi square analyses were conducted on the 240 participants who had a family member under the age of 21 years. APPROVAL: Approval for the conduct of this study was obtained from the Institutional Review Board for Human Subjects Research from the University of Alabama at Birmingham. * Support for this study came from the Alabama Council on Developmental Disabilities and from Grant # 5-T76-08-001 from the Maternal and Child Health Bureau. Methods Results Conclusions/ Implications Table 1. Percent Not Performing ADL Independently at Time of Survey (0-21 years) AGE in Years Feeding*Dressing*Bathing*Toileting* < 441%90%92%86% 4-524%72%85%65% 6-89%49%74%37% 9-126%45%59%31% 13+10%30%43%22% Total18%57%71%49% *p= <.001 Table 2. Percent Not Performing ADL Independently at Time Time of Survey (6-21 years) AGE in Years FeedingDressingBathing*Toileting 6.-89%49%74%37% 9-126%45%59%31% 13+10%30%43%22% Total9%41%58%30% *p=.01 DAILY LIVING SKILLS Not unexpectedly, as shown in Table 1 below, differences among the age groups for each of the ADLs examined were highly significant (p<.001). However, it is generally known that most of these basic skills of self-feeding, dressing, bathing and toileting are acquired by 5 years of age or less for typically developing children, even though the child may not be totally independent in all areas. Thus, we eliminated the children 5 and under and performed a second analysis. These results are shown in Table 2. When the younger children in our sample were eliminated from the analysis, many of the children 6 years and older still were not able to independently perform these daily living skills. Nine percent did not independently feed themselves, 41% did not independently dress, 58% did not independently bathe, and 30% were not independent in their toileting activities. Among this somewhat older group of children, however, only the daily living skill of bathing remained significantly different among the age groups. Greater than 40% of the youth 15 years and older were reported to be unable to independently bathe themselves. AGE OF DIAGNOSIS We also examined whether the child’s perceived level of daily living skills was related to the age of diagnosis. In general those children who were perceived to have a lower level of skill, i.e., unable to perform the skill or needed help, were diagnosed earlier (feeding p=.01, dressing p= <.001, bathing p<.001, toileting p=<.001). Further, those children with more impaired language abilities were identified earlier (p=.<.001). A number of studies over the last decade have shown the importance of evaluating the adaptive behavior skills of individuals who are being assessed for an Autism Spectrum Disorder (ASD) 1-3. The results of this study clearly indicated that in this group of children and youth who, according to caregiver report, had been diagnosed with an ASD that there were clear perceived difficulties for many of the children in each of the daily living skills areas. This study emphasizes the utility of using a standardized method of measuring adaptive skills of children and youth as they are being diagnosed and periodically to understand the longitudinal nature of the development of these skills in individuals with ASD. Further, such periodic assessments can help service providers and those planning programs and treatments for the population with ASD to better incorporate specific activities to improve the performance of these skills and tasks. A person’s ability to function independently within the daily environment in regard to these daily living skills is critical to any notion of independence for individuals with ASDs. The additional results that point to children who are less independent and those who have less ability to verbally communicate as receiving a diagnosis earlier reinforces the findings of others that children with greater impairments and more severe symptoms tend to be diagnosed earlier. Perhaps, greater awareness of the implications of deficits in the daily living skills can be an earlier clue that a thorough assessment of the child’s overall abilities may be in order.