Outcomes in adolescents and adults with autism: A review of the literature
01 Oct 2011-Research in Autism Spectrum Disorders (Elsevier. 6277 Sea Harbor Drive, Orlando, FL 32887-4800. Tel: 877-839-7126; Tel: 407-345-4020; Fax: 407-363-1354; e-mail: usjcs@elsevier.com; Web site: http://www.elsevier.com)-Vol. 5, Iss: 4, pp 1271-1282
TL;DR: A critical review of the current empirical studies that have addressed prognosis in this population in terms of diagnostic severity, cognitive functioning, language, academic performance and social outcomes is presented in this paper.
About: This article is published in Research in Autism Spectrum Disorders.The article was published on 2011-10-01. It has received 361 citations till now. The article focuses on the topics: Autism & Population.
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TL;DR: Higher income and higher functional ability were associated with higher adjusted odds of participation in postsecondary employment and education and those from lower-income families and those with greater functional impairments are at heightened risk for poor outcomes.
Abstract: We examined the prevalence and correlates of postsec- ondary education and employment among youth with an autism spec- trum disorder (ASD). METHODS: Data were from a nationally representative survey of parents, guardians, and young adults with an ASD. Participation in postsecondary employment, college, or vocational education and lack of participation in any of these activities were examined. Rates were compared with those of youth in 3 other eligibility categories: speech/ language impairment, learning disability, and mental retardation. Logistic regression was used to examine correlates of each outcome. RESULTS: For youth with an ASD, 34.7% had attended college and 55.1% had held paid employment during the first 6 years after high school. Morethan50%ofyouthwhohadlefthighschoolinthepast2yearshad no participation in employment or education. Youth with an ASD had the lowest rates of participation in employment and the highest rates of no participation compared with youth in other disability categories. Higher income and higher functional ability were associated with higher adjusted odds of participation in postsecondary employment and education. CONCLUSIONS: Youth with an ASD have poor postsecondary employment and education outcomes, especially in the first 2 years after high school. Those from lower-income families and those with greater functional impairments are at heightened risk for poor outcomes. Further research is needed to understand how transition planning before high school exit can facilitate a better connection to productive postsecondary activities. Pediatrics 2012;129:1042-1049
834 citations
TL;DR: Childhood IQ and early language ability appeared to be the strongest predictors of later outcome, but few studies examined other early variables associated with adult functioning.
463 citations
Cites background from "Outcomes in adolescents and adults ..."
...Three reviews of adult outcome studies have been published relatively recently (Henninger & Taylor, 2012; Howlin & Moss, 2012; Levy & Perry, 2011)....
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...In addition, the earlier reviews by Howlin et al. (2004), Levy and Perry (2011), Howlin and Moss (2012) and Henninger and Taylor (2012) were examined and relevant studies not identified in the search described above were included if they met the inclusion criteria....
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TL;DR: The current study revises the Module 4 algorithm and calibrates raw overall and domain totals to provide metrics of autism spectrum disorder (ASD) symptom severity and increase comparability of ADOS scores across modules.
Abstract: The recently published Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2) includes revised diagnostic algorithms and standardized severity scores for modules used to assess younger children. A revised algorithm and severity scores are not yet available for Module 4, used with verbally fluent adults. The current study revises the Module 4 algorithm and calibrates raw overall and domain totals to provide metrics of autism spectrum disorder (ASD) symptom severity. Sensitivity and specificity of the revised Module 4 algorithm exceeded 80 % in the overall sample. Module 4 calibrated severity scores provide quantitative estimates of ASD symptom severity that are relatively independent of participant characteristics. These efforts increase comparability of ADOS scores across modules and should facilitate efforts to examine symptom trajectories from toddler to adulthood.
400 citations
Cites background from "Outcomes in adolescents and adults ..."
...…et al. 1980) to predict adult outcomes or investigate change in ASD symptoms (e.g., Anderson et al. 2013; Eaves and Ho 2008; Fein et al. 2013; GillespieLynch et al. 2012; Howlin et al. 2013; Sigman and McGovern 2005; Piven et al. 1996; Shattuck et al. 2006; see Levy and Perry 2011 for review)....
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...However, studies of young adults with autism spectrum disorders (ASD) report variable outcomes (see Levy and Perry 2011)....
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...Only 3–25 % of individuals with ASD reportedly achieve ‘‘optimal outcomes’’ (generally referring to cognitive and adaptive abilities falling within the ‘‘average’’ range and the ability of these individuals to function independently in the community; Helt et al. 2008; Levy and Perry 2011)....
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TL;DR: Facing challenges simultaneously in the domains of education, student life and daily (independent) living, had a major impact on students’ well being and students pointed out to a set of recommendations for support.
Abstract: The transition into higher education constitutes a precarious life stage for students with autism spectrum disorder (ASD). Research on how students with ASD navigate college life is needed for the development of adequate support. This study investigated the challenges and support needs of 23 students with ASD in higher education through semi-structured interviews. Data were analyzed following the principles of Grounded Theory. Students faced difficulties with new situations and unexpected changes, social relationships, problems with information processing and time management and had doubts about disclosure. Facing these challenges simultaneously in the domains of education, student life and daily (independent) living, had a major impact on students' well being. Besides these challenges, students also reported benefits that contributed to success in the three domains. They pointed out to a set of recommendations for support. These findings are linked with previous research and implications for higher education institutions are extrapolated on the basis of these findings.
241 citations
Additional excerpts
...…also correspond with the general research outcomes that throughout adulthood, individuals with ASD continue to struggle with issues related to communication, social skills, repetitive behaviors, resistance to change and sensory challenges (Levy & Perry, 2011; Magiatia, Taya, & Howlin, 2014)....
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TL;DR: A transdiagnostic framework is proposed, where compensation represents the processes responsible for an observed mismatch between behaviour and underlying cognition in a neurodevelopmental disorder, at any point in development.
231 citations
Cites result from "Outcomes in adolescents and adults ..."
...This is corroborated by studies from the literature on ASD demonstrating that the severity of autistic symptoms in childhood is a poor predictor of the extent to which behavioural improvements will be made (Fountain et al., 2012; Levy and Perry, 2011)....
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References
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11 Jun 2013
113,134 citations
TL;DR: Psychiatric disorders are common and frequently multiple in children with autism spectrum disorders and should be routinely evaluated in the clinical assessment of this group.
Abstract: Objective Autism spectrum disorders are now recognized to occur in up to 1% of the population and to be a major public health concern because of their early onset, lifelong persistence, and high levels of associated impairment. Little is known about the associated psychiatric disorders that may contribute to impairment. We identify the rates and type of psychiatric comorbidity associated with ASDs and explore the associations with variables identified as risk factors for child psychiatric disorders. Method A subgroup of 112 ten- to 14-year old children from a population-derived cohort was assessed for other child psychiatric disorders (3 months' prevalence) through parent interview using the Child and Adolescent Psychiatric Assessment. DSM-IV diagnoses for childhood anxiety disorders, depressive disorders, oppositional defiant and conduct disorders, attention-deficit/hyperactivity disorder, tic disorders, trichotillomania, enuresis, and encopresis were identified. Results Seventy percent of participants had at least one comorbid disorder and 41% had two or more. The most common diagnoses were social anxiety disorder (29.2%, 95% confidence interval [Cl)] 13.2-45.1), attention-deficit/hyperactivity disorder (28.2%, 95% Cl 13.3-43.0), and oppositional defiant disorder (28.1 %, 95% Cl 13.9-42.2). Of those with attention-deficit/hyperactivity disorder, 84% received a second comorbid diagnosis. There were few associations between putative risk factors and psychiatric disorder. Conclusions Psychiatric disorders are common and frequently multiple in children with autism spectrum disorders. They may provide targets for intervention and should be routinely evaluated in the clinical assessment of this group. J. Am. Acad. Child Adolesc. Psychiatry , 2008;47(8):921-929.
2,857 citations
TL;DR: In 1966, when an outpatient treatment program for autistic children and their families was initiated, there were two major sets of guidelines for diagnosing the children who were referred to the program, and the most promising at tempt to translate the Kanner definition into an empirical rating scale was the Rimland Checklist.
Abstract: In 1966, when we initiated an outpatient treatment program for autistic children and their families (Schopler & Reichler, 1971), there were two major sets of guidelines for diagnosing the children who were referred to our program. The first was Kanner ' s (1943) original definition of autism. At the start of our program the most promising at tempt to translate the Kanner definition into an empirical rating scale was the Rimland Checklist (1964), later revised into a second form (Rimland, 1971). This checklist was completed for all children evaluated in our program. From the very beginning, however, we had the clinical impression that very few of our children were autistic according to Kanner ' s criteria. The Creak (1964) criteria served as a second system of classification. Like Kanner 's , these were not entirely satisfactory from our perspective. Specifically, classification guidelines suitable for very young children were lacking. In response to the limitations of existing classification systems, we developed our own 15-scale rating system (Reichler & Schopler, 1971). These scales incorporated (a) Kanner ' s pr imary features, (b) other characteristics, noted by Creak, found
1,967 citations
Book•
01 Jan 1987
TL;DR: In this article, a sibling's perspective on the diagnosis of Rett's syndrome is presented. But the authors focus on the development and social development of individuals with autism and do not address the social aspects of the disorder.
Abstract: Partial table of contents: DIAGNOSIS AND CLASSIFICATION Rett's Syndrome: A Pervasive Developmental Disorder (R Van Acker) DEVELOPMENT AND BEHAVIOR Social Development in Autism (F Volkmar et al) Autism in Infancy and Early Childhood (W Stone) NEUROBIOLOGY Neurological Aspects of Autism (N Minshew, et al) ASSESSMENT Behavioral Assessment of Individuals with Autism (M Powers) INTERVENTIONS Behavioral Interventions (J Bregman & J Gerdtz) Working with Families (L Marcus, et al) Routine Health Care (R Lacamera & A Lacamera) PUBLIC POLICY PERSPECTIVES Coping with the Diagnosis of Autism (B Siegel) Ethical Issues in Research and Treatment (A Klin & D Cohen) THEORETICAL PERSPECTIVES Classification and Causal Issues in Autism (I Rapin) Perspectives on Social Impairment (L Waterhouse & D Fein) INTERNATIONAL PERSPECTIVES Canada (P Szatmari) Spain (J Fuentes) PERSONAL PERSPECTIVES A Sibling's Perspective on Autism (J Konidaris) Indexes
1,783 citations
TL;DR: Although outcome for adults with autism has improved over recent years, many remain highly dependent on others for support and more fine-grained research is needed into the childhood variables that are associated with good or poor outcome.
Abstract: Background: 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. Individuals with a childhood performance IQ of at least 70 had a significantly better outcome than those with an IQ below this. However, within the normal IQ range outcome was very variable and, on an individual level, neither verbal nor performance IQ proved to be consistent prognostic indicators.
Conclusions: Although outcome for adults with autism has improved over recent years, many remain highly dependent on others for support. This study provides some information on prognostic indicators, but more fine-grained research is needed into the childhood variables that are associated with good or poor outcome.
1,680 citations