Bagatell, N. (2004). Constructing identities in social worlds: Stories of four adults with autism. ProQuest Information & Learning: US.
ABSTRACT: How people use occupation to make meaning in their lives has been a question of great interest to occupational scientists. This ethnographic study concerns how adults with high functioning autism, through their efforts at constructing identities, create meaningful lives. Utilizing data collected from extensive interviews and participant observation, this dissertation is about the lives of four adults and their process of "doing, belonging, and becoming." Each participant's story is presented as a separate chapter for, though they share a diagnosis, each participant had a unique way of crafting their identities that was influenced by the historical epoch, the socio-cultural environment in which they lived and their personal characteristics. Despite traditional views that focus on the social deficits of autism, the participants in this study were remarkably resourceful in using social strategies to construct their identities. They used social interaction, narrative and occupation, three inter-related means of constructing identities, although they did not always do so in a "typical" manner. Key to their efforts was locating and becoming part of a community, for, as I argue, it is within these social worlds that identities are crafted. For adults with high functioning autism, constructing identities is a process requiring creativity and ingenuity. It is often hard work, in many ways a struggle. However, the participants persisted in their attempts to craft their identities and create a meaningful life. By focusing on the lived experience of individuals with high functioning autism, the findings of this study challenge many of the traditional deficit-focused views of autism. This research contributes to the ongoing debate regarding identity, providing strong support for the argument that rather than having a unified and stable identity, individuals construct multiple identities that are socially situated and are revised as life unfolds. The findings also illustrate that people strive to create cohesion and a sense of continuity. While many scholars consider cohesion and fragmentation contradictory, I conclude that these ideas may in fact complement each other. Lastly, the findings provide support for and extend the ideas put forth by occupational scientists regarding the relationship of occupation and identity. (PsycINFO Database Record (c) 2008 APA, all rights reserved)
Barnard, J., Harvey, V., Potter, D., Prior, A. (2001). Ignored or ineligible? The reality for adults with autism spectrum disorders. London: NAS Publications.
Link to article: http://www.nas.org.uk/content/1/c4/28/61/ignored.pdf
Bejerot, S., & Wetterberg, L. (2008). Autism spectrum disorders and psychiatric comorbidity in adolescents and adults. Clinical Neuropsychiatry: Journal of Treatment Evaluation, 5(1), 3-8.
ABSTRACT: Seven articles in this issue raise interesting questions about psychiatric comorbidity in autism spectrum disorders (ASD) in adolescent and adult patients. The answer to these questions will eventually be helpful in developing an etiological diagnosis for the different diseases and syndromes in question. The ultimate identification of a disease requires defining etiology. Most research on ASD has focused on children and young adults, and studies of adults with normal intellectual abilities and ASD is fairly new. Our efforts are still fumbling and there are many loose ends to disentangle. The present issue of Clinical Neuropsychiatry is devoted to the various conditions and symptoms that may affect adults with ASD, resulting in referrals for psychiatric care. In this issue we have made a deliberate search for parallels with other psychiatric conditions in patients with ASD. It is not unusual that different explanations are suggested in disorders with an unknown etiology. Knowledge is undoubtedly superior to guessing. Our goal has been to bridge the gap between Medical Science and Medical Practice with regard to ASD in adults and adolescents. (PsycINFO Database Record (c) 2008 APA, all rights reserved)
Bellini, S. (2006). The Development of Social Anxiety in Adolescents With Autism Spectrum Disorders. Focus on Autism and Other Developmental Disabilities, 21, 138-145.
ABSTRACT: The present study examined factors contributing to the development of social anxiety in adolescents with autism spectrum disorders (ASD). In particular, the study examined the contribution of social skill deficits and physiological hyperarousal to the development of social anxiety in individuals with ASD. Forty-one adolescents with high-functioning ASD participated in the study. The results of a multiple regression analysis suggest that the proposed model (i.e., the combination of social skills and physiological arousal) is a significant predictor of social anxiety in this sample. A developmental pathways model is proposed that identifies potential predisposing or protective factors that may contribute to the development, protection, or remediation of social anxiety in adolescents with autism. (PsycINFO Database Record (c) 2007 APA, all rights reserved)
Billstedt, E., Gillberg, C., & Gillberg, C. (2005). Autism after Adolescence: Population-based 13- to 22-year Follow-up Study of 120 Individuals with Autism Diagnosed in Childhood. Journal of Autism and Developmental Disorders, 35, 351-360.
ABSTRACT: Prospective population-based follow-up study of 120 individuals with autism followed from childhood to adulthood. Methods: Individuals with autism, diagnosed in childhood, were followed prospectively for a period of 13-22 years and re-evaluated at ages 17-40 years. The instruments used at follow-up were the DISCO, WAIS-R, WISC-III, Vineland Adaptive Behavior Scales, psychiatric-medical examination and GAF-scale. A set of criteria was used for the classification of outcomes, taking into consideration employment, higher education/vocational training, independent living and peer relations. Results: Six of the 120 (5%) had died at the time of follow-up, and six declined participation. Overall outcome was poor in 78% of cases. Only four individuals were independent albeit leading fairly isolated lives. Childhood IQ-level was positively correlated with better adult outcome, as was the existence of some communicative phrase speech at age six years. Conclusions: Children with autism as diagnosed in the 1960s, 1970s, and 1980s may have an even worse psychosocial outcome than previously believed. (PsycINFO Database Record (c) 2007 APA, all rights reserved)
Billstedt, E., Gillberg, I. C., & Gillberg, C. (2007). Autism in adults: Symptom patterns and early childhood predictors. Use of the DISCO in a community sample followed from childhood. Journal of Child Psychology and Psychiatry, 48(11), 1102-1110.
ABSTRACT: Few studies have looked at the very long-term outcome of individuals with autism who were diagnosed in childhood. Methods: A longitudinal, prospective, community-based follow-up study of adults who had received the diagnosis of autism (classic and atypical) in childhood (n = 105) was conducted. A structured interview (the Diagnostic Interview for Social and COmmunication disorders-the DISCO) was used in order to evaluate symptoms and symptom patterns 13-22 years after original diagnosis. Childhood measures, including IQ-level at time of childhood diagnosis and communicative speech registered before age 5 years, were studied in relation to the presence of autism symptoms at follow-up. Results: The classical and atypical autism groups were fairly homogeneously impaired in terms of symptoms in the social interaction category whereas other common childhood autism symptoms, including maladaptive and stereotyped behaviours, were more variable in the study group at follow-up. Odd responses to sensory stimuli were still extremely common. Speech before 5 years of age, IQ, gender, diagnosed medical disorder and onset of epilepsy before 5 years were variables that correlated to outcome on the DISCO algorithm for autistic spectrum disorders (Wing & Gould, 1979) concerning style and quality of social interaction, communication style and pattern of self-chosen activities. Conclusions: Social interaction problems were still present in the vast majority of adults with autism/atypical autism, but behavioural impairments were much more variable in adulthood. Almost all cases were reported to show persistent perceptual problems. Certain childhood measures were found to prospectively predict adult social interaction style, communication type, and pattern of self-chosen activities, which still met diagnostic criteria for autism/atypical autism in adulthood. (PsycINFO Database Record (c) 2008 APA, all rights reserved)
Boucher, J., Cowell, P., Howard, M., Broks, P., Farrant, A., Roberts, N. et al. (2005). A combined clinical, neuropsychological, and neuroanatomical study of adults with high functioning autism. Cognitive Neuropsychiatry, 10, 165-213.
ABSTRACT: Three hypotheses concerning associations between neuroanatomical abnormalities, neuropsychological impairments, and the behavioural manifestations of autism were investigated. The primary hypothesis was that the social interaction impairments diagnostic of autism are associated with deficits of socioemotional perception and abnormalities of the amygdala. One subsidiary hypothesis was that the learning and language impairments that occur in less able individuals with autism are associated with impaired memory, and with abnormalities of hippocampal regions. A second subsidiary hypothesis was that the repetitive behaviour diagnostic of autism is associated with executive deficits and with abnormalities of the prefrontal cortex. Associations between the neuroanatomical regions investigated were also examined. Methods. Ten adult males with high functioning autism (HFA) were compared with 10 healthy controls matched for age, sex, verbal and nonverbal ability. Hypothesis-driven structural MRI and neuropsychological tests were used to collect neuroanatomical and neuropsychological data on all subjects. A version of the Wing Autism Diagnostic Interview Checklist was used to collect clinical data on the HFA subjects. Results. Strong convergent evidence in support of the amygdala hypothesis was obtained, and preliminary support for the hippocampal/parahippocampal hypothesis. No clear evidence was obtained in support of the prefrontal hypothesis. Patterns of associations amongst volume measures within and between medial temporal and prefrontal regions suggest stronger within-region and weaker between-region associations in the HFA group compared with controls. Conclusions. These findings are discussed in terms of a model of autism in which selective abnormalities of the amygdala and hippocampus (in all cases) and of the parahippocampal gyms (in lower functioning cases) are implicated, and in which a disruption of coordinated limbic and prefrontal activity may be critical. (PsycINFO Database Record (c) 2007 APA, all rights reserved)
Bradley, E. A., Summers, J. A., Wood, H. L., & Bryson, S. E. (2004). Comparing Rates of Psychiatric and Behavior Disorders in Adolescents and Young Adults with Severe Intellectual Disability with and without Autism. Journal of Autism and Developmental Disorders, 34, 151-161.
ABSTRACT: Eight males and four females with an Autism Diagnostic Interview-Revised (ADI-R) diagnosis of autism (mean age of 16.3 years) and severe intellectual disability (IQ < 40) were individually matched to controls on the basis of chronological age, gender, and nonverbal IQ. The dependent measure was the Diagnostic Assessment for the Severely Handicapped-II, which is used to screen for psychiatric and behavior disorders in lower-functioning individuals. Participants with autism showed significantly greater disturbances as measured by the Diagnostic Assessment for the Severely Handicapped-II total score and seven of 13 subscales. They also averaged 5.25 clinically significant disturbances compared with 1.25 disturbances for participants without autism. Specific vulnerabilities to anxiety, mood, sleep, organic syndromes, and stereotypies/tics were found in the participants with comorbid autism. (PsycINFO Database Record (c) 2007 APA, all rights reserved)
Broadstock, M., Doughty, C., & Eggleston, M. (2007). Systematic review of the effectiveness of pharmacological treatments for adolescents and adults with autism spectrum disorder. Autism, 11(4), 335-348.
ABSTRACT: The variable expression of autism over the lifespan is likely to lead to different symptoms and support requirements, and to distinct responses to pharmacotherapy treatment, in older patients compared to children. This systematic review considers the effectiveness of pharmacological treatment in managing autism spectrum disorder in adolescents and adults. Following a comprehensive search of literature published in English from 1980, methodological criteria were applied to identify studies designed to reliably assess treatment effectiveness. Only five double-blind, randomized controlled trials were eligible for appraisal. All had small sample sizes (mean = 30) and brief treatment duration of no more than 12 weeks. The paucity of trials and their methodological limitations means that there is only preliminary evidence about the short-term effectiveness of a few drug treatments for this age group. There was also a lack of reliable data reported on drug safety profiles. Methodological challenges and directions for future research are discussed. (PsycINFO Database Record (c) 2008 APA, all rights reserved)
Cimera, R. E., & Cowan, R. J. (2009). The costs of services and employment outcomes achieved by adults with autism in the US. Autism, 13(3), 285-302.
ABSTRACT: This article examines the cost of services and employment outcomes obtained by adults with autism within the United States vocational rehabilitation (VR) system. It found that the number of such individuals has increased by more than 121 percent from 2002 to 2006. Moreover, though adults with autism were employed at higher rates than most disability groups investigated, they tended to work far fewer hours and earn less in wages per week. The study also found that adults with autism were among the most costly individuals to serve. (PsycINFO Database Record (c) 2009 APA, all rights reserved)
Crane, L., & Goddard, L. (2008). Episodic and semantic autobiographical memory in adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 38(3), 498-506.
ABSTRACT: Episodic and semantic autobiographical memories were examined in a group of adults with autism spectrum disorders (ASD) and a control group matched for age, gender and IQ. Results demonstrated a personal episodic memory deficit in the ASD group in the absence of a personal semantic memory deficit, suggesting a deficit dissociation between these two components of memory in ASD. Further analysis of memories across different lifetime periods revealed the adolescent and early adult lifetime periods to facilitate memory recall in the control group, but not in the ASD group. These findings suggest a distinctive pattern of remembering in ASD. (PsycINFO Database Record (c) 2008 APA, all rights reserved)
Danielsson, S., Gillberg, I. C., Billstedt, E., Gillberg, C., & Olsson, I. (2005). Epilepsy in Young Adults with Autism: A Prospective Population-based Follow-up Study of 120 Individuals Diagnosed in Childhood. Epilepsia, 46(6), 918-923.
ABSTRACT: Little is known about the long-term outcome of epilepsy in autism and the epilepsy characteristics of adults with autism. This prospective population-based study was conducted in an attempt to point out differences on a group basis between adults with autism with or without epilepsy, and to describe the occurrence, the seizure characteristics, and the outcome of epilepsy in autism. Methods: One hundred eight of 120 individuals with autism diagnosed in childhood and followed up prospectively for a period of 13-22 years were reevaluated at ages 17-40 years. As adults, the majority had mental retardation and autistic disorder or autistic-like condition. Interviews were performed with the caretakers of 42 of 43 individuals with a history of epilepsy, and their medical records were reviewed. Results: Adults with autism and mental retardation constituted a severely disabled group. On a group basis, both the cognitive level and the adaptive behavior level were lower in the epilepsy group than in the nonepilepsy group (p < 0.05). In all, 38% had epilepsy. One third had epilepsy onset before age 2 years. Remission of epilepsy was seen in 16%. Partial seizures with or without secondarily generalized seizures were the dominating seizure type. Conclusions: In a community sample of individuals with autism followed up from childhood through to adult age, one of three had epilepsy since childhood/adolescence. Severe mental retardation and autism are significantly associated with epilepsy, especially in female patients. Seizure frequency has a great impact on the individuals' lives. Specialist medical care is needed in this severely communication-disabled population. (PsycINFO Database Record (c) 2009 APA, all rights reserved)
Eales, M. J. (1993). Pragmatic impairments in adults with childhood diagnoses of autism or developmental receptive language disorder. Journal of Autism and Developmental Disorders, 23(4), 593-617.
ABSTRACT: Audiotaped conversational samples from adult males diagnosed as having autistic disorders (n = 15) or developmental receptive language disorders (n = 17) in childhood were transcribed and analyzed using methods based on those of D. V. Bishop and C. Adams (see record <RelatedUID>1990-25744-001</RelatedUID>). Ss with autism showed substantially greater pragmatic impairment not explicable by generalized impairment of verbal skills. This was mainly due to autistic Ss' greater difficulty in forming context-relevant communicative intentions; in contrast, pragmatic impairments arising from failures in translating intentions into spoken utterances (i.e., impairments at the level of execution) did not distinguish between the groups In both diagnostic groups, impairment in forming appropriate communicative intentions was closely related to more generalized impairment of reciprocal social behavior. (PsycINFO Database Record (c) 2008 APA, all rights reserved)
Eaves, L. C., & Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders, 38(4), 739-747.
ABSTRACT: To learn about the lives of young adults with ASD, families with children born 1974-1984, diagnosed as preschoolers and followed into adolescence were contacted by mail. Of 76 eligible, 48 (63%) participated in a telephone interview. Global outcome scores were assigned based on work, friendships and independence. At mean age 24, half had good to fair outcome and 46% poor. Comorbid conditions, obesity and medication use were common. Families noted unmet needs particularly in social areas. Multilinear regression indicated a combination of IQ and CARS score at age 11 predicted outcome. Earlier studies reported more adults with ASD who had poor to very poor outcomes, however current young people had more opportunities, and thus better results were expected. (PsycINFO Database Record (c) 2008 APA, all rights reserved)
Engstrom, I., Ekstrom, L., & Emilsson, B. (2003). Psychosocial functioning in a group of Swedish adults with Asperger syndrome or high-functioning autism. Autism, 7(1), 99-110.
ABSTRACT: This study reports on psychosocial functioning in Swedish adults with Asperger syndrome (AS) or high-functioning autism (HFA). A systematically selected sample of patients and relatives was interviewed concerning their psychosocial situation. The majority was living independently. All persons but one were unemployed. None was married and none had children. Only a few had some kind of partner. Most persons needed a high level of public and/or private support. The overall adjustment was rated good in 12 percent, fair in 75 percent and poor in 12 percent. Adult persons with AS/HFA have extensive need for support from their families and/or society. This information is important in order to provide adequate interventions that are in accordance with the expressed needs of the individuals themselves. (PsycINFO Database Record (c) 2008 APA, all rights reserved)
Ghaziuddin, M. (2005). Mental health aspects of autism and Asperger syndrome., 252.
ABSTRACT: The aim of this book is to present an overview of the mental health aspects of autism and Asperger syndrome. It is not generally known that several types of behavioral and emotional problems occur in persons with autism spectrum disorders, of which autism and Asperger syndrome are the main categories. In fact, there is a common misperception among professionals and caregivers alike that people with these disorders do not develop additional psychiatric conditions. The purpose of this book is to dispel this myth. Although written primarily for parents and care-givers, specialists working in the field, such as psychiatrists and pediatricians, will also find it useful. (PsycINFO Database Record (c) 2007 APA, all rights reserved)
Ghaziuddin, M., & Zafar, S. (2008). Psychiatric comorbidity of adults with autism spectrum disorders. Clinical Neuropsychiatry: Journal of Treatment Evaluation, 5(1), 9-12.
ABSTRACT: Relatively little is known about the psychiatric comorbidity of adults with autism spectrum disorders (ASD). Method: This report describes the clinical correlates of psychiatric symptoms in a group of 38 subjects referred with a presumptive diagnosis of ASD. Results: Ten subjects did not meet the criteria of ASD and were excluded from the series. The diagnoses most likely to be mistaken for ASD were refractory depression and anxiety disorders. Out of the remaining 28 subjects (18 males, 10 females; age range 18 to 57 years), 21 suffered from additional psychiatric disorders, most commonly depression. Conclusions: Additional psychiatric conditions, in particular depression, are common in adults with autism spectrum disorders. Implications of these findings are discussed. (PsycINFO Database Record (c) 2008 APA, all rights reserved)
Gillott, A., & Standen, P. J. (2007). Levels of anxiety and sources of stress in adults with autism. Journal of Intellectual Disabilities, 11(4), 359-370.
ABSTRACT: Clinical reports suggest that anxiety is a pertinent issue for adults with autism. We compared 34 adults with autism with 20 adults with intellectual disabilities, utilizing informant-based measures of anxiety and stress. Groups were matched by age, gender and intellectual ability. Adults with autism were almost three times more anxious than the comparison group and gained significantly higher scores on the anxiety subscales of panic and agoraphobia, separation anxiety, obsessive-compulsive disorder and generalized anxiety disorder. In terms of sources of stress, significant differences between the two groups were also found, and stress was found to correlate with high anxiety levels for the autism group, particularly the ability to cope with change, anticipation, sensory stimuli and unpleasant events. That is, the more anxious the individual with autism, the less likely they were able to cope with these demands. This has important implications for clinicians in terms of both assessment and treatment. (PsycINFO Database Record (c) 2008 APA, all rights reserved)
Hellemans, H., Colson, K., Verbraeken, C., Vermeiren, R., & Deboutte, D. (2007). Sexual behavior in high-functioning male adolescents and young adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(2), 260-269.
ABSTRACT: Group home caregivers of 24 institutionalized, male, high-functioning adolescents and young adults with Autism Spectrum Disorder, were interviewed with the Interview Sexuality Autism. Most subjects were reported to express sexual interest and to display some kind of sexual behavior. Knowledge of socio-sexual skills existed, but practical use was moderate. Masturbation was common. Many subjects were seeking physical contact with others. Half of the sample had experienced a relationship, while three were reported to have had sexual intercourse. The number of bisexual orientations appeared high. Ritual-sexual use of objects and sensory fascinations with a sexual connotation were sometimes present. A paraphilia was present in two subjects. About one third of the group needed intervention regarding sexual development or behavior. (PsycINFO Database Record (c) 2009 APA, all rights reserved)
Hewitt, L. E. (1995). Communicative competence of young adults with autism: Ability to meet listeners' needs. ProQuest Information & Learning: US.
ABSTRACT: The literature on the language of children with autism agrees that pragmatic language disorders are hallmarks of the syndrome, even when other aspects of language seem to be intact. A theory that has arisen from psychological research may help to pinpoint the source of pragmatic language difficulties in autistic speakers. This "theory-of-mind" research offers evidence that children and adults with autism have special difficulty in understanding others' mental states. Competence in many, though not all, areas of pragmatic language ability requires speakers to monitor the mental state of listeners; the theory-of-mind hypothesis predicts that speakers with autism will have most difficulty with those linguistic structures requiring such monitoring, while those that do not should be handled with relative competence. The exact nature of the language used by speakers with autism in naturalistic contexts has been little studied. In this study, a modified ethnographic approach to data collection was used, in which audio recordings were made of 6 young adults (ranging in age from 19 to 21) with autism participating in a "Newsletter Club" at their school. During these sessions, the students described their school and home activities. Tapes were transcribed using the SALT language sample analysis computer program, and coded for: referencing devices; responses to questions; spontaneous use of requests for information; discourse markers; politeness markers; and spatial deixis. These categories were selected to reflect a range of degree to which inferencing regarding listener's knowledge state was required, drawing on linguistic and discourse-functional analyses of these structures. Findings indicated that the study participants showed competence in using pragmatic language structures not requiring close monitoring of the listener's knowledge state, such as speaker-oriented spatial deixis. In contrast, the participants showed difficulty in use of those structures which did requ (PsycINFO Database Record (c) 2008 APA, all rights reserved)
Howlin, P. (2003). Longer-Term Educational and Employment Outcomes. In M. Prior (Ed.), Learning and behavior problems in Asperger syndrome (pp. 269-293). New York, NY, US: Guilford Press.
ABSTRACT: Difficulties in meeting the educational, social, and emotional needs of individuals with an autistic spectrum disorder (ASD) often become more pronounced as the children age. In contrast to the vast literature on teaching methods and educational programs for pre- and primary school children, there are few systematic studies of interventions for secondary school-age pupils with autism or Asperger syndrome (AS). Moreover, research on children with mixed intellectual disabilities indicates that although inclusion may succeed in the early years, relatively few studies have reported on successful integration of these students within secondary school. Acceptance by normally developing peers and mainstream teachers tends to decrease with age (Beveridge, 1996) and studies over the last two decades have consistently reported that children whose problems are more pervasive, such as those with autism, may experience increasing difficulties in mainstream placements as they grow older (Carlberg & Kavale, 1980; Deno, Maruyama, Espin, & Cohen, 1990; Rich & Ross 1989). Indeed, unless appropriate support is available, these children may receive less attention and less individualized instruction in normal classes than in segregated classes. All too often, within mainstream settings, lack of adequate training or of systematic, ongoing support for teachers and classroom assistants leads to a focus on minimizing behavioral difficulties rather than enhancing skills. Thus, although children with special needs may be tolerated, they are not necessarily assimilated or accepted (Farrell, 1997; Howlin, 2002). Furthermore, social interactions with typically developing peers do not tend to occur unless the environment, teaching materials, and children's activities are appropriately structured (Lord, 1995; Wolfberg & Schuler, 1993), and even then, close, reciprocal friendships are unlikely to develop (Burack, Root, & Zigler, 1997; Gottlieb, 1990; Saintano, Goldstein, & Strain, 1992). (PsycINFO Database Record (c) 2004 APA, all rights reserved)
Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology & Psychiatry, 45(2), 212-229.
ABSTRACT: Information on long-term prognosis in autism is limited. Outcome is known to be poor for those with an IQ below 50, but there have been few systematic studies of individuals with an IQ above this. Method: Sixty-eight individuals meeting criteria for autism and with a performance IQ of 50 or above in childhood were followed up as adults. Their mean age when first seen was 7 years (range 3-15 years); at follow-up the average age was 29 years (range 21-48 years). Outcome measures included standardised cognitive, language and attainment tests. Information on social, communication and behavioural problems was obtained from the Autism Diagnostic Interview (ADI). Results: Although a minority of adults had achieved relatively high levels of independence, most remained very dependent on their families or other support services. Few lived alone, had close friends, or permanent employment. Communication generally was impaired, and reading and spelling abilities were poor. Stereotyped behaviours or interests frequently persisted into adulthood. Ten individuals had developed epilepsy. Overall, only 12% were rated as having a 'Very Good' outcome; 10% were rated as 'Good' and 19% as 'Fair'. The majority was rated as having a 'Poor' (46%) or 'Very Poor' (12%) outcome... (PsycINFO Database Record (c) 2004 APA, all rights reserved)
Krauss, M. W., Seltzer, M. M., & Jacobson, H. T. (2005). Adults with autism living at home or in non-family settings: Positive and negative aspects of residential status. Journal of Intellectual Disability Research, 49, 111-124.
ABSTRACT: Very little is known about the context of caregiving by parents of adults with autism or about the perceived impacts of continued patterns of co-residence vs. out-of-family living. In the present study, maternal assessments of residential status, involvement with adult children living in a non-family setting, and the impacts on mothers of their residential arrangements were examined. Methods: Mothers from 133 families of adults (aged 22 years and older) with autism spectrum disorder (ASD) completed questionnaires as part of a longitudinal study on family caregiving. Mothers completed open-ended questions regarding the positive and negative aspects of their child's residential arrangement. Mothers also completed scaled questions regarding their satisfaction with their child's residential arrangement, the different ways in which people's lives change after a relative moves from the home, and the frequency of contact with their son or daughter. Results: Mothers found co-residing with their adult child to be of greatest positive benefit to the family while those living apart found this residential arrangement of greatest benefit to the son or daughter with ASD. The greatest negative consequences for co-residing mothers were understood to fall on families, while mothers felt the majority of negative consequences for those that lived apart. There was a high level of contact and maternal involvement between the mother and adult child with ASD even after out-of-home placement. Conclusions: Residential status, as appraised by mothers, has varying impacts on the individual with ASD, on the family, and on mothers as individuals and caregivers. The present analysis suggests the multifaceted and highly contingent maternal experience associated with where her child with ASD lives. Among families whose children live elsewhere, there is an impressive amount of continued contact between these families and their son/daughter. (PsycINFO Database Record (c) 2007 APA, all rights reserved)
Lawer, L., Brusilovskiy, E., Salzer, M. S., & Mandell, D. S. (2009). Use of vocational rehabilitative services among adults with autism. Journal of Autism and Developmental Disorders, 39(3), 487-494.
ABSTRACT: This study examined the experiences of individuals with autism spectrum disorders (ASD) in the US Vocational Rehabilitation System (VRS). Subjects included all 382,221 adults ages 18?65 served by this system whose cases were closed in 2005; 1,707 were diagnosed with ASD. Adults with ASD were more likely than adults with other impairments to be denied services because they were considered too severely disabled. Among those served, adults with ASD received the most expensive set of services. They and adults with MR were most likely to be competitively employed at case closure. Post hoc analyses suggest that their employment was highly associated with on-the-job supports. The results suggest the importance of the VRS in serving adults with ASD. (PsycINFO Database Record (c) 2009 APA, all rights reserved)
Piven, J., Harper, J., Palmer, P., & Arndt, S. (1996). Course of behavioral change in autism: A retrospective study of high-IQ adolescents and adults. Journal of the American Academy of Child & Adolescent Psychiatry, 35(4), 523-529.
ABSTRACT: Autistic behaviors were systematically examined in 38 high-IQ adolescent and adult autistic individuals at their current age (13-28 yrs) and retrospectively at age 5 yrs using a standardized interview for autism. Ss had nonverbal IQs of 67-136. Significant change over time in autistic behaviors, generally in the direction of improvement, was detected. The proportion of Ss showing improvement in communication and social behaviors was found to be significantly higher than the proportion showing improvement in ritualistic/repetitive behaviors. Five Ss who met Diagnostic and Statistical Manual of Mental Disorders-IV (DSM-IV) criteria for autistic disorder at age 5 yrs no longer met criteria at their current age, although all 5 continued to have substantial impairment. The study of patterns of behavioral change over time in autism has practical implications for both diagnosis and prognosis. (PsycINFO Database Record (c) 2008 APA, all rights reserved)
Renty, J., & Roeyers, H. (2006). Quality of life in high-functioning adults with autism spectrum disorder: The predictive value of disability and support characteristics. Autism, 10, 511-524.
ABSTRACT: Although the concept of quality of life has increasingly been used in the field of intellectual disabilities over the past three decades, the factors contributing to quality of life of persons with autism spectrum disorder (ASD) have received relatively little attention. In this study, disability and support characteristics associated with variations in the level of quality of life among adults with ASD are identified, using self-report measures. Fifty-eight high-functioning adults with ASD participated in the study. The results of a multiple linear regression analysis reveal that support characteristics are related to quality of life in adults with ASD, whereas disability characteristics are not. The R˝ effect size (0.620) is large and significant. The results reinforce the significance of an available supportive social network, the importance of a substantial needs assessment and effective professional support. (PsycINFO Database Record (c) 2007 APA, all rights reserved)
SaldaÒa, D., ¡lvarez, R. M., LobatÛn, S., Lopez, A. M., Moreno, M., & Rojano, M. (2009). Objective and subjective quality of life in adults with autism spectrum disorders in southern Spain. Autism, 13(3), 303-316.
ABSTRACT: Subjective and objective measures of quality of life (QoL) were obtained for adults with autism spectrum disorders (ASDs) living in Andalusia (Spain). Seventy-four families responded to questionnaires about objective QoL indicators such as employment, health, adaptive behaviour and social network, and were asked to act as proxies for subjective QoL measures. Outcome on objective QoL was extremely poor. Social networks were most frequently composed of family members. Community-oriented resources were absent in most cases. For two-thirds of the families, the ability to act as proxies for subjective QoL was seriously limited by the participants poor social and communicative abilities. The results are indicative of the need for additional support to families of adults with ASD and increased community-based resources. Further conceptualization of indicators and measurement of subjective QoL in individuals with severe disabilities and ASD is also needed in order to include their own perspective in the evaluation of service provision. (PsycINFO Database
Schumacher, D., Karin Sue (2009). Young adults with autism transitioning to the world of work: Parent perspectives. ProQuest Information & Learning: US.
ABSTRACT: The purpose of this qualitative study is to examine information provided by parents of individuals with autism regarding their child?s transition experience. Twelve participants parenting young adults with autism spectrum disorder (ASD) in active transition to work, defined as those in grade levels nine through twelve, contributed to a self administered survey. Five major themes emerged from the data related to; (a) accommodation or impediment to supports, (b) skills sets perceived as supportive or detrimental to establishing self determinism, (c) exploring beneficial or harmful attributes to obtaining employment, (d) discerning benefits of the transition process, and (e) determining parent knowledge. A major question that comes out of the results of this study seems to indicate that parents are right to be skeptical about their children's prospects to live as fulfilled individuals in society today. The gap between what could be with proper support and what is in terms of what is being delivered to their children and families by the current system seems broad and in need of further examination. (PsycINFO Database Record (c) 2009 APA, all rights reserved)
Shattuck, P. T., Seltzer, M. M., Greenberg, J. S., Orsmond, G. I., Bolt, D., Kring, S. et al. (2007). Change in autism symptoms and maladaptive behaviors in adolescents and adults with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1735-1747.
ABSTRACT: This study examined change prospectively in autism symptoms and maladaptive behaviors during a 4.5 year period in 241 adolescents and adults with an autism spectrum disorder who were 10-52 years old (mean = 22.0) when the study began. Although many individuals' symptoms remained stable, a greater proportion of the sample experienced declines than increases in their level of autism symptoms and maladaptive behaviors, and there were significant improvements in mean levels of symptoms. Individuals with mental retardation had more autism symptoms and maladaptive behaviors than those without mental retardation, and they improved less over time. Compared to adolescents, older sample members (31 and older) had fewer maladaptive behaviors and experienced more improvement in these behaviors over time. (PsycINFO Database Record (c) 2008 APA, all rights reserved)
Stokes, M., Newton, N., & Kaur, A. (2007). Stalking, and social and romantic functioning among adolescents and adults with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 37(10), 1969-1986.
ABSTRACT: We examine the nature and predictors of social and romantic functioning in adolescents and adults with ASD. Parental reports were obtained for 25 ASD adolescents and adults (13-36 years), and 38 typical adolescents and adults (13-30 years). The ASD group relied less upon peers and friends for social (OR = 52.16, p < .01) and romantic learning (OR = 38.25, p < .01). Individuals with ASD were more likely to engage in inappropriate courting behaviours (?≤-sub(df = 19) = 3168.74, p < .001) and were more likely to focus their attention upon celebrities, strangers, colleagues, and ex-partners (?≤-sub(df = 5) = 2335.40, p < .001), and to pursue their target longer than controls (t = -2.23, df = 18.79, p < .05). These results show that the diagnosis of ASD is pertinent when individuals are prosecuted under stalking legislation in various jurisdictions. (PsycINFO Database Record (c) 2008 APA, all rights reserved)