Outcomes in adolescents and adults with autism: A review of the literature

doi:10.1016/j.rasd.2011.01.023

Research in Autism Spectrum Disorders

Volume 5, Issue 4, October–December 2011, Pages 1271-1282

https://doi.org/10.1016/j.rasd.2011.01.023 Get rights and content

Abstract

Since Kanner's first account of children with autism, there has been extensive research into the presentation of and interventions for Autistic Disorder. However, only a small proportion of this literature has focused on the progress of individuals with autism as they move from childhood and adolescence into adulthood. This paper is 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. The overall pattern of change is considered and factors that appear to influence or predict outcome in adulthood are reviewed. Limitations in this pool of literature and recommendations for future studies are discussed.

Research highlights

► Critical review of the empirical studies of prognosis in individuals with autism. ► The literature indicates that outcomes are variable. ► Limitations in this pool of literature are highlighted. ► Recommendations for future research are provided.

Introduction

Autism is a disorder characterized by three core features: qualitative impairments in social interaction, qualitative impairments in communication, and restricted, repetitive, and stereotyped patterns of behaviour, interests and activities (American Psychiatric Assoication, 2000). Since Kanner's first account of children with autism, there has been extensive research into the presentation of and interventions for Autism Spectrum Disorders (ASD). However, limited research has been conducted on the progress of individuals with autism as they move from childhood and adolescence into adulthood. Historically, prognosis for these individuals in adolescence/adulthood has been poor. However, in the past 20 years, there has been a proliferation of research into this area as well as improvements in the services and interventions for this population and their families. Given these changes in the field, it is important to understand whether there have been improvements in the outcomes of adolescents and adults with autism, as well as to understand the clinical presentation, education and community needs of these adolescents and adults.

This paper will begin with a historical perspective on general outcomes in this population. This will be followed by an overview of current empirical studies that have addressed the prognosis of adolescents and adults with autism in terms of their diagnostic severity, cognitive functioning, language and academic performance, behavioural functioning and social outcomes. The term outcome will be used to describe long-term prognosis as this is the term used extensively in the literature. The overall pattern of change over time is considered and factors that appear to influence outcome in adulthood are reviewed. Individuals on the autism spectrum exhibit a range of functioning and a subset of this population also have a developmental disability (DD). The impact of this diagnosis is important to consider in addition to the autism diagnosis. Outcomes will be discussed for both individuals with autism without a DD and individuals with autism and DD. In addition, outcomes of adolescents and adults with autism, where relevant, will be compared to the outcomes of adolescents and adults with DD without autism.

Section snippets

Historical perspectives on outcome

Studies following children with autism into adulthood conducted prior to the 1990s suggested a very poor prognosis. In terms of social outcomes, the majority of individuals were highly dependent and socially isolated. These individuals continued to live with their parents, in sheltered communities, in state institutions or psychiatric hospitals. School attendance and completion was rare and very few had established social relationships (DeMyer et al., 1973, Gillberg and Steffenburg, 1987,

Autism symptom severity

Considering the core symptoms of autism (social and communication impairments and repetitive and stereotyped behaviours), overall research has shown general symptomatic improvements with increasing age across the autism spectrum (Ballabin-Gil et al., 1996, Byrd, 2002, Eaves and Ho, 1996, Howlin, 2005, Howlin et al., 2004, Matson and Horovitz, 2010, Piven et al., 1996, Schopler et al., 1980, Seltzer et al., 2004, Shattuck et al., 2007, Shea and Mesibov, 2005). These studies have evaluated both

Psychiatric disorders

Estimates of co-morbid mental health problems in individuals with autism vary greatly from 4–81% (Davis et al., 2011; Laninhart, 1999; Leyfer et al., 2006, Sterling et al., 2008). This is higher than the 5–49% range reported in the DD population (Brereton et al., 2006, Chadwick et al., 2005a, Chadwick et al., 2005b, Chang et al., 2003, Cooper et al., 2007, Cormack et al., 2000, Davis et al., 2008, Dekker et al., 2002, Di Nuovo and Buono, 2007, Dykens, 2000, Einfeld et al., 2006, Emerson, 2003,

Mortality rates

Although autism and DD are not classified as degenerative disorders, life expectancy in these groups is somewhat reduced compared to the general population (Isager et al., 1999, Mouridsen et al., 2008, O’Brien, 2001, Shavelle et al., 2001, Tyler et al., 2007). Isager et al. (1999) found that excess mortality in the autistic population was especially marked for those with severe to profound disabilities or those of higher intelligence. In addition, medical conditions associated with autism, in

Conclusions

Outcome for adolescents and adults with autism is an important area of research. The research on prognosis has examined a number of different domains including: diagnostic severity, cognitive functioning, language and academic performance, behavioural functioning and social outcomes. Overall, studies have shown that outcomes in adolescence and adulthood are highly variable with some individuals improving markedly, others experiencing deterioration in functioning and many continuing a stable

Recommendations for the field

It is important for future research to address these limitations. Studies must account for the services provided for individuals in childhood as well as the services available during adolescence and adulthood. This is necessary to understand the context in which these individuals are developing and to understand differences in outcomes between cohorts. It is also necessary to evaluate lower functioning individuals with autism in order to more sensitively describe outcomes in this population.

Acknowledgements

We would like to thank Dr. David Factor, Dr. Rosemary Condillac, Carol Haddad and Kerry Wells for their support and assistance throughout data collection. In addition, we would like to express sincere gratitude to all of the families and participants for their time and contribution. It was a privilege to hear their stories.

References (142)

R.K. Abramson et al.
Biological liability in families with autism
Journal of the American Academy of Child and Adolescent Psychiatry
(1992)
H.L. Chang et al.
Screening for autism spectrum disorder in adult psychiatric outpatients in a clinic in Taiwan
General Hospital Psychiatry
(2003)
T.E. Davis et al.
Anxiety symptoms across the lifespan in people diagnosed with autistic disorder
Research in Autism Spectrum Disorders
(2011)
S.F. Di Nuovo et al.
Psychiatric syndromes comorbid with mental retardation: Differences in cognitive and adaptive skills
Journal of Psychiatric Research
(2007)
B.J. Freeman et al.
The stability of cognitive and behavioral parameters in autism: A twelve-year prospective study
Journal of the American Academy of Child and Adolescent Psychiatry
(1991)
S. LoVullo et al.
Comorbid psychopathology in adults with autism spectrum disorders and intellectual disabilities
Research in Developmental Disabilities
(2009)
J.L. Matson et al.
The effect of autism spectrum disorders on adaptive independent living skills in adults with severe intellectual disability
Research in Developmental Disabilities
(2009)
American Psychiatric Assoication
Diagnostic and statistical manual of mental disorders
(2000)
H. Ando et al.
Effects of age on communication skill levels and prevalence of maladaptive behaviors in autistic and mentally retarded children
Journal of Autism and Developmental Disorders
(1979)
H. Ando et al.
Effects of age on adaptive behavior levels and academic skill levels in autistic and mentally retarded children
Journal of Autism and Developmental Disorders
(1980)

K. Ballabin-Gil et al.

Longitudinal examination of the behavioral, language, and social changes in a population of adolescents and young adults with autistic disorder

Pediatric Neurology

(1996)

G.P. Barnhill

Outcomes in adults with Asperger syndrome

Focus on Autism and Other Developmental Disabilities

(2007)

J. Beadle-Brown et al.

The Camberwell cohort 25 years on: Characteristics and changes in skills over time

Journal of Applied Research in Intellectual Disabilities

(2006)

J. Beadle-Brown et al.

Long-term outcome for people with severe intellectual disabilities: Impact of social impairment

American Journal on Mental Retardation

(2005)

J. Beadle-Brown et al.

Changes in social impairment for people with intellectual disabilities: A follow-up of the Camberwell Cohort

Journal of Autism and Developmental Disorders

(2002)

J. Beadle-Brown et al.

Changes in skills for people with intellectual disability: A follow-up of the Camberwell cohort

Journal of Intellectual Disability Research

(2000)

L.P. Bernheimer et al.

Young children with developmental delays as young adults: Predicting developmental and personal–social outcomes

American Journal on Mental Retardation

(2006)

E. Billstedt et al.

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

(2007)

E. Billstedt et al.

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

(2005)

P.F. Bolton et al.

Autism, affective and other psychiatric disorders: Patterns of familial aggregation

Psychological Medicine

(1998)

E.A. Bradley et al.

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

(2004)

A.V. Brereton et al.

Psychopathology in children and adolescents with autism compared to young people with intellectual disability

Journal of Autism and Developmental Disorders

(2006)

S.E. Bryson et al.

Epidemiology of autism: Prevalence, associated characteristics, and implications for research and service delivery

Mental Retardation and Developmental Disabilities: Research Reviews

(1998)

Byrd, R. (2002). Report to the Legislature on the principle findings from the epidemiological of autism in California:...

M. Cederland et al.

Asperger syndrome and autism: A comparative longitudinal follow-up study more than 5 years after original diagnosis

Journal of Autism and Developmental Disorders

(2008)

O. Chadwick et al.

Handicaps and the developmental of skills between childhood and early adolescence in young people with severe intellectual disabilities

Journal of Intellectual Disabilities Research

(2005)

O. Chadwick et al.

Psychiatric diagnoses and behavior problems from childhood to early adolescence in young people with severe intellectual disabilities

Psychological Medicine

(2005)

O. Chadwick et al.

Factors affecting the risk of behavior problems in children with severe intellectual disability

Journal of Intellectual Disability Research

(2000)

R. Chaplin

General psychiatric services for adults with intellectual disability and mental illness

Journal of Intellectual Disability Research

(2004)

T. Charman et al.

Comorbid behavioral psychopathology and autism severity: Same or different?

S.Y. Chung et al.

A follow-up study of infantile autism in Hong Kong

Journal of Autism and Developmental Disorders

(1990)

A.M. Clarke et al.

The adult outcome of early behavioral abnormalities

International Journal of Behavioral Development

(1988)

D.J. Clarke et al.

Pervasive developmental disorders and psychoses in adult life

British Journal of Psychiatry

(1989)

S.A. Cooper et al.

Reply to the commentary: The prevalence, incidence and factors predictive of mental III-health in adults with profound intellectual disabilities. Prospective study

Journal of Applied Research in Intellectual Disabilities

(2007)

S. Cooper et al.

An epidemiological investigation of affective disorders with a population-based cohort of 1023 adults with intellectual disability

Psychological Medicine

(2007)

K.F.M. Cormack et al.

Behavioral and emotional difficulties in students attending schools for children and adolescents with severe intellectual disabilities

Journal of Intellectual Disability Research

(2000)

E. Davis et al.

Anxiety disorders in persons with developmental disabilities: Empirically informed diagnosis and treatment. Reviews literature on anxiety disorders in DD population with practical take-home messages for the clinician

Psychiatric Quarterly

(2008)

K.P. de Ruiter et al.

Development of parent-and teacher-reported emotional and behavioral problems in young people with intellectual disabilities: Does level of intellectual disability matter?

Journal of Applied Research in Intellectual Disabilities

(2008)

K.P. de Ruiter et al.

Developmental course of psychopathology in youths with and without intellectual disabilities

Journal of Child Psychology and Psychiatry

(2007)

M.C. Dekker et al.

Emotional and behavioral problems in children and adolescents with and without intellectual disability

Journal of Child Psychology and Psychiatry

(2002)

M.K. DeMyer et al.

Prognosis in autism: A follow-up study

Journal of Autism and Child Schizophrenia

(1973)

E.M. Dykens

Annotation: Psychopathology in children with intellectual disability

Journal of Child Psychology and Psychiatry

(2000)

L.C. Eaves et al.

Young adult outcome of autism spectrum disorders

Journal of Autism and Developmental Disorders

(2008)

L.C. Eaves et al.

Brief report: Stability and change in cognitive and behavioral characteristics of autism through childhood

Journal of Autism and Developmental Disorders

(1996)

S.L. Einfeld et al.

Psychopathology in young people with intellectual disability

Journal of the American Medical Association

(2006)

E. Emerson

Prevalence of psychiatric disorders in children and adolescents with and without psychiatric disability

Journal of Intellectual Disability Research

(2003)

E. Emerson et al.

Emotional and behavioral needs of children and adolescents with intellectual disabilities in urban conurbation

Journal of Intellectual Disability Research

(2005)

I. Engström et al.

Psychosocial functioning in a group of Swedish adults with Asperger syndrome or high-functioning autism

Autism

(2003)

S. Fecteau et al.

Developmental changes of autistic symptoms

Autism

(2003)

D. Fein et al.

Cognitive and behavioral profiles of children who recover from autism

Cited by (287)

The economic burden of autism spectrum disorder with and without intellectual disability in China: A nationwide cost-of-illness study
2024, Asian Journal of Psychiatry
The economic burden of autism spectrum disorder (ASD) on individuals, their families and society as a whole is poorly understood. Accurate figures are crucial for economic estimates and service planning.
The total lifetime individual costs and annual societal costs of ASD in China were estimated with a prevalence-based, gross cost of illness approach and data from multiple sources. The direct medical costs in outpatient and inpatient settings from the electronic health records (EHRs) of hospitals, and direct nonmedical costs from a national survey were included. The indirect costs were from both the national survey and the estimation using human capital methods. Age-specific lifetime incremental societal costs were measured. Comorbidity-related and unrelated costs were analyzed separately.
The discounted lifetime cost for an individual with ASD in China was $2.65 million (at 2020 prices, $) for those without intellectual disability (ID) and $4.61 million (at 2020 prices, $) for those with ID. The total cost of ASD amounted to $41.8 billion in 2020. Productivity loss were major cost drivers for ASD individuals without ID. Direct nonmedical costs (rehabilitation or adult care costs etc.) were major drivers for ASD individuals with ID. In a lifetime course, the total annual costs for middle aged and elderly (>42 years) were highest, followed by transitional adults (18–29 years) and preschoolers, both for individuals with or without ID. The distribution of costs over the lifespan varied by the cost category.
ASD imposes a substantial economic burden on families and health care systems. Sectors and services coordination should be given policy considerations.
Longitudinal studies of challenging behaviours in autistic children and adults: A systematic review and meta-analysis
2023, Clinical Psychology Review
Autistic children and adults are at increased risk of showing behaviours that may be described as challenging, however, little is known about whether or how these behaviours may change over time. Given the profound impact that challenging behaviour can have on both the autistic individual and their support network, it is critical that the trajectory of challenging behaviours be better understood. This systematic review and meta-analysis identified and synthesised observational longitudinal studies of challenging behaviour in autistic individuals. Fifty-six studies were included in the systematic review, and the effect sizes of 37 independent samples arising from 34 of these reports were examined through meta-analysis. Crucially, across the 37 samples, scores on the measures of challenging behaviour reduced by a small, yet significant, extent over time. Although age of the sample at baseline assessment did not moderate the effect, the time between the baseline assessment and final follow-up and age at final follow-up both moderated the magnitude of the effect, with challenging behaviour scores reducing to a larger extent in (a) studies with longer intervals between baseline and final follow-up and (b) studies with older samples at follow-up. The results from the current systematic review and meta-analysis have both theoretical and practical implications for understanding challenging behaviour over time in autistic individuals. Avenues for future research are also highlighted that may allow better understanding, and therefore support of, challenging behaviour in autistic individuals.
Autism spectrum disorder
2023, Encyclopedia of Mental Health, Third Edition: Volume 1-3
Decades of research indicate that autism spectrum disorder (ASD) is a lifelong disorder that ranges in severity across individuals. Though the central diagnostic components of the disorder center on social communication and restrictive and repetitive behaviors, ASD may influence many other features of an individual's life. This article includes an overview of the disorder and diagnostic process. We provide an in-depth look at various domains that may intersect with ASD including social and language development, play and leisure, wellness, and adolescence and adulthood. Characteristics of contemporary services are highlighted including an emphasis on personalization, integration of the individual's strengths, and connection to family and cultural values.
Measuring academic skill development for students with autism spectrum disorder using curriculum-based measurement: A scoping review and call for research
2024, Psychology in the Schools
Cross-cultural variation in experiences of acceptance, camouflaging and mental health difficulties in autism: A registered report
2024, PLoS ONE
Experiences of Parenting an Autistic Individual During Adolescence and Emerging Adulthood in the Indian Context: An Interpretative Phenomenological Analysis
2024, Indian Journal of Psychological Medicine

View all citing articles on Scopus

View full text

ReviewOutcomes in adolescents and adults with autism: A review of the literature

Abstract

Research highlights

Introduction

Section snippets

Historical perspectives on outcome

Autism symptom severity

Psychiatric disorders

Mortality rates

Conclusions

Recommendations for the field

Acknowledgements

Journal of the American Academy of Child and Adolescent Psychiatry

General Hospital Psychiatry

Research in Autism Spectrum Disorders

Journal of Psychiatric Research

Journal of the American Academy of Child and Adolescent Psychiatry

Research in Developmental Disabilities

Research in Developmental Disabilities

Diagnostic and statistical manual of mental disorders

Effects of age on communication skill levels and prevalence of maladaptive behaviors in autistic and mentally retarded children

Journal of Autism and Developmental Disorders

Effects of age on adaptive behavior levels and academic skill levels in autistic and mentally retarded children

Journal of Autism and Developmental Disorders

Longitudinal examination of the behavioral, language, and social changes in a population of adolescents and young adults with autistic disorder

Pediatric Neurology

Outcomes in adults with Asperger syndrome

Focus on Autism and Other Developmental Disabilities

The Camberwell cohort 25 years on: Characteristics and changes in skills over time

Journal of Applied Research in Intellectual Disabilities

Long-term outcome for people with severe intellectual disabilities: Impact of social impairment

American Journal on Mental Retardation

Changes in social impairment for people with intellectual disabilities: A follow-up of the Camberwell Cohort

Journal of Autism and Developmental Disorders

Changes in skills for people with intellectual disability: A follow-up of the Camberwell cohort

Journal of Intellectual Disability Research

Young children with developmental delays as young adults: Predicting developmental and personal–social outcomes

American Journal on Mental Retardation

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

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

Autism, affective and other psychiatric disorders: Patterns of familial aggregation

Psychological Medicine

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

Psychopathology in children and adolescents with autism compared to young people with intellectual disability

Journal of Autism and Developmental Disorders

Epidemiology of autism: Prevalence, associated characteristics, and implications for research and service delivery

Mental Retardation and Developmental Disabilities: Research Reviews

Asperger syndrome and autism: A comparative longitudinal follow-up study more than 5 years after original diagnosis

Journal of Autism and Developmental Disorders

Handicaps and the developmental of skills between childhood and early adolescence in young people with severe intellectual disabilities

Journal of Intellectual Disabilities Research

Psychiatric diagnoses and behavior problems from childhood to early adolescence in young people with severe intellectual disabilities

Psychological Medicine

Factors affecting the risk of behavior problems in children with severe intellectual disability

Journal of Intellectual Disability Research

General psychiatric services for adults with intellectual disability and mental illness

Journal of Intellectual Disability Research

Comorbid behavioral psychopathology and autism severity: Same or different?

A follow-up study of infantile autism in Hong Kong

Journal of Autism and Developmental Disorders

The adult outcome of early behavioral abnormalities

International Journal of Behavioral Development

Pervasive developmental disorders and psychoses in adult life

British Journal of Psychiatry

Reply to the commentary: The prevalence, incidence and factors predictive of mental III-health in adults with profound intellectual disabilities. Prospective study

Journal of Applied Research in Intellectual Disabilities

An epidemiological investigation of affective disorders with a population-based cohort of 1023 adults with intellectual disability

Psychological Medicine

Behavioral and emotional difficulties in students attending schools for children and adolescents with severe intellectual disabilities

Journal of Intellectual Disability Research

Anxiety disorders in persons with developmental disabilities: Empirically informed diagnosis and treatment. Reviews literature on anxiety disorders in DD population with practical take-home messages for the clinician

Psychiatric Quarterly

Development of parent-and teacher-reported emotional and behavioral problems in young people with intellectual disabilities: Does level of intellectual disability matter?

Journal of Applied Research in Intellectual Disabilities

Developmental course of psychopathology in youths with and without intellectual disabilities

Journal of Child Psychology and Psychiatry

Emotional and behavioral problems in children and adolescents with and without intellectual disability

Review
Outcomes in adolescents and adults with autism: A review of the literature