Research in Autism Spectrum Disorders 5 (2011) 1271–1282

Contents lists available at ScienceDirect

Research in Autism Spectrum Disorders

Journal homepage: http://ees.elsevier.com/RASD/default.asp

Review

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

literature
Alissa Levy a,*, Adrienne Perry a,b
a
Department of Psychology, Behavioral Sciences Building 209, York University, 4700 Keele Street, Toronto, Ontario M3J 1P3, Canada
b
TRE-ADD, Thistletown Regional Centre, 51 Panorama Court, Etobicoke, Ontario M9V 4L8, Canada

A R T I C L E I N F O A B S T R A C T

Article history: Since Kanner’s first account of children with autism, there has been extensive research into
Received 13 January 2011 the presentation of and interventions for Autistic Disorder. However, only a small
Received in revised form 21 January 2011 proportion of this literature has focused on the progress of individuals with autism as they
Accepted 21 January 2011 move from childhood and adolescence into adulthood. This paper is a critical review of the
Available online 5 March 2011 current empirical studies that have addressed prognosis in this population in terms of
diagnostic severity, cognitive functioning, language, academic performance and social
Keywords: outcomes. The overall pattern of change is considered and factors that appear to influence
Autism
or predict outcome in adulthood are reviewed. Limitations in this pool of literature and
Developmental disabilities
recommendations for future studies are discussed.
Outcome
Adolescents
ß 2011 Elsevier Ltd. All rights reserved.
Adults

Contents

1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1272
2. Historical perspectives on outcome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1272
3. Current research on outcome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1272
3.1. Autism symptom severity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1272
3.2. Cognitive and language outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1273
3.3. Adaptive behaviour outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1274
3.4. Social outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1275
3.5. Education, occupation and living situation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1275
3.6. Social integration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1276
4. Psychiatric disorders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1276
5. Mortality rates . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1278
6. Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1278
7. Recommendations for the field . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1278
Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1279
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1279

* Corresponding author. Tel.: +1 416 736 2100x40266; fax: +1 416 736 5814.
E-mail addresses: ajlevy@yorku.ca, lis.81@hotmail.com (A. Levy), perry@yorku.ca (A. Perry).

1750-9467/$ – see front matter ß 2011 Elsevier Ltd. All rights reserved.
doi:10.1016/j.rasd.2011.01.023
1272 A. Levy, A. Perry / Research in Autism Spectrum Disorders 5 (2011) 1271–1282

1. 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.

2. 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 &
Steffenburg, 1987; Kanner, 1971; Lockyer & Rutter, 1969, 1970; Lotter, 1974; Rumsey, Rappaport & Sceery, 1984; Szatmari,
Bartolucci, Bremner, Bond & Rich, 1989). This finding is partly a cohort effect stemming from the philosophy of
institutionalization and a lack of special education services. Deterioration was also noted in this population with a subset of
individuals exhibiting a decline in cognitive and language skills (Gillberg & Steffenburg, 1987; Lockyer & Rutter, 1969, 1970)
and increased behavioural difficulties (Gillberg & Steffenburg, 1987; Rumsey, Rappaport & Sceery, 1984) in adolescence and
adulthood. In terms of comorbid mental health concerns in this population, very little systematic research was conducted at
this time and comorbid mental health issues were not considered. However, a number of case reports suggested a high rate
of schizophrenia (Clarke, Littlejohns, Corbett & Joseph, 1989; Waterhouse & Fein, 1984).
Outcomes were found to be better for higher functioning individuals and individuals with better developed
communication skills. Kanner’s (1971) own follow-up of his original 11 individuals with autism suggested that for some of
these individuals, particularly those who become more aware of their differences, mid-adolescence was often a period of
improvement. He remarked that, as these individuals became more aware of their differences, they began to make an effort
to change (Howlin, 2003; Kanner, 1971). Subsequent research found that a small subset of ‘‘best outcome’’ individuals were
employed or involved in higher education, were living independently and had developed social relationships (i.e.,
friendships, long-term romantic relationships and/or marriage) (Ando & Yoshimura, 1979; Ando, Yoshimura, Wakabayashi,
1980; Gillberg & Steffenburg, 1987; Lockyer & Rutter, 1969, 1970; Szatmari et al., 1989).
Lockyer and Rutter (1970) were the first authors to devise a system of rating outcome in individuals with autism based on
the education level, the employment history, the degree of independent living and the social relationships of these
individuals. Prior to 1990, only 25% of adolescents and adults with autism were classified as having a ‘‘good’’ or ‘‘fair’’
outcome and 75% had a ‘‘poor’’ outcome. Early predictors included autism symptom severity, cognitive functioning and
language development in childhood (DeMyer et al., 1973; Lockyer & Rutter, 1969, 1970).

3. Current research on outcome

3.1. 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, Rapin, Tuchman & Shinnare, 1996; Byrd, 2002; Eaves & Ho, 1996; Howlin, 2005; Howlin, Goode,
Hutton & Rutter, 2004; Matson & Horovitz, 2010; Piven, Harper, Palmer & Arndt, 1996; Schopler, Reichler, DeVellis & Daly,
1980; Seltzer, Shattuck, Abbeduto & Greenberg, 2004; Shattuck et al., 2007; Shea & Mesibov, 2005). These studies have
evaluated both naturally developing changes in individuals with autism as well as symptom outcome after intervention.
 A. Levy, A. Perry / Research in Autism Spectrum Disorders 5 (2011) 1271–1282 1273

Recent research has suggested that the majority of individuals show improvement in their communication, social interaction
and pattern of restricted and repetitive behaviours by late adolescence (Byrd, 2002; Eaves & Ho, 1996; Fecteau, Mottron,
Berthiaume & Burack, 2003; McGovern & Sigman, 2005; Piven et al., 1996; Seltzer et al., 2004). In many of these cases,
however, there are some residual characteristics of social, communication and/or behavioural idiosyncrancies (Fecteau et al.,
2003; Matson & Horovitz, 2010; Shea & Mesibov, 2005).
Several authors have even indicated that a small number of individuals diagnosed with autism as children do not meet
diagnostic criteria in later years (Fein et al., 2009; Helt et al., 2008; McGovern & Sigman, 2005; Seltzer et al., 2004; von
Knorring & Hägglöf, 1993). Recent research has suggested that 3–25% of individuals with autism achieve ‘‘optimal
outcomes’’, meaning that they fall within the average range cognitively and adaptively and are functioning independently in
the community. However, mild psychiatric vulnerabilities, particularly Attention Deficit Hyperactivity Disorder and anxiety
may persist (Fein et al., 2009; Helt et al., 2008).
On the other hand, a number of studies that tracked the developmental course of autism have found deterioration in
symptoms and/or behaviours throughout adolescence (Ballabin-Gil et al., 1996; Billstedt, Gillberg & Gillberg, 2005, 2007;
Howlin et al., 2004; Howlin, 2005; Kobayashi, Murato & Yashinaga, 1992; Larsen & Mouridsen, 1997; Lockyer & Rutter, 1969,
1970; Nordin & Gillberg, 1998; Venter, Lord & Schopler, 1992; von Knorring & Hägglöf, 1993). Many adolescents and adults
with autism were reported by their parents to exhibit significant behaviour problems including resistance to change
(Billstedt et al., 2007; Lockyer & Rutter, 1969, 1970), sensory abnormalities (Billstedt et al., 2007), compulsions (Gillberg &
Steffenburg, 1987), unacceptable sexual behaviour, tantrums (Rumsey et al., 1984), hyperactivity (Gillberg & Steffenburg,
1987), aggression (Ballabin-Gil et al., 1996; Gillberg & Steffenburg, 1987; Piven et al., 1996), and/or self-injurious behaviour
(Venter et al., 1992). Even if the frequency of difficult behaviour decreased, the results of such behaviour on the part of
individuals who were taller, heavier and stronger were more distressing or dangerous than the same behaviour in children
(Shea & Mesibov, 2005). This deterioration appears to plateau in mid-to-late adolescence (Kobayashi et al., 1992; Larsen &
Mouridsen, 1997; Venter et al., 1992).
The risk of behavioural deterioration in adolescence or early adulthood was highest in individuals who had lower IQ or
who developed comorbid conditions such as epilepsy (Howlin, 2005; Smith & Matson, 2010b). Increased rates of behavioural
difficulties were reported at all cognitive levels except for ‘‘normal/near normal adolescents’’ (i.e., those who function close
to the average IQ range) (Ballabin-Gil et al., 1996; Gillberg & Steffenburg, 1987; von Knorring & Hägglöf, 1993). A similar
finding is reported in the DD literature whereby severity of disability is strongly associated with increased risk of behaviour
problems (Beadle-Brown, Murphy & Wing, 2006; Chadwick, Cuddy, Kusel & Taylor, 2005a, 2005b; Chadwick, Piroth, Walker,
Bernard & Taylor, 2000; de Ruiter, Dekker, Duoma, Verhulst & Koot, 2008; Murphy et al., 2005; Shevall, Majnemar, Platt,
Webster & Birnbaum, 2005; Whitaker & Read, 2006). Moreover, within the autism population, some studies have found that
individuals with lower IQ in childhood were at greater risk of developing new problems in adulthood (Hutton, 1998, as cited
in Howlin, 2005). Some researchers have suggested that deterioration was more likely to occur in females (Gillberg &
Steffenburg, 1987; von Knorring & Hägglöf, 1993); however, others have found no difference between males and females
(Kobayashi et al., 1992). It is most likely that the finding that deterioration was more likely to occur in females is true of lower
functioning women (Howlin, 2005).
The above cited studies have utilized a range of methodologies such as case description, family adequacy ratings,
behavioural observations and standardized measures (e.g. Childhood Autism Rating Scale, Vineland Adaptive Behaviour Scale,
Autism Diagnostic Interview) to assess developmental course. As well, these studies have used variable samples that have
included a mixture of high and low-functioning individuals. It is also difficult to separate ‘‘true’’ autism severity as measured by
a valid autism measure versus general behaviour profiles which are common in individuals with DD. These behaviours may not
be related to the autism profile but more to the cognitive level of the individual. In addition, these studies have been conducted
over a large time period and, as a result, may not account for cohort effects. It is, therefore, difficult to make comparisons across
studies. It is important for future research to examine the question of the developmental trends in autism in a more cohesive
population using standardized measures at multiple points of comparison.

3.2. Cognitive and language outcomes

Childhood IQ and early language development are highly correlated in children with autism and have been found to be
predictive of adult outcomes (Ando et al., 1980; Howlin, 2005; Lord & Venter, 1992; Lotter, 1974; Matson & Horovitz, 2010;
Seltzer et al., 2004). The following section will provide an overview of the research on IQ and language level as a predictor of
outcomes as well as the change in these variables in these individuals. Researchers have found that individuals with higher
childhood IQ’s and language development by the age of 5–6 years are more likely to have positive outcomes (Ando et al.,
1980; Howlin, 2005; Howlin et al., 2004; Lord & Venter, 1992; Lotter, 1974; Morgan et al., 2002).
A significant relationship between childhood IQ and adult outcome has been reported (Lotter, 1974; McGovern & Sigman,
2005; Sigman & McGovern, 2005). Researchers have suggested that individuals with autism and DD have significantly poorer
functioning in terms of education, work, living situation and general independence than those with autism and average
intelligence (Howlin, 2005; Howlin et al., 2004; Morgan et al., 2002). It has been shown that a childhood IQ of 50 or below
was almost always associated with significant limitations and dependence in adulthood. The outcome was more variable for
individuals with IQs between 50 and 70 (Barnhill, 2007; Howlin, 2005; Howlin et al., 2004; Morgan et al., 2002; Seltzer et al.,
2004).
1274 A. Levy, A. Perry / Research in Autism Spectrum Disorders 5 (2011) 1271–1282

This relationship between childhood IQ and adult outcomes has also been noted in the outcome literature on individuals
with DD (Shea & Mesibov, 2005). Cognitive level is the largest predictor of outcome in this population (Beadle-Brown et al.,
2000, 2006; Bernheimer, Keogh & Guthrie, 2006; Keogh, Bernheimer & Guthrie, 2004; O’Brien, 2001; Shevall et al., 2005).
Higher IQ is associated with larger gains in self-care, educational and communication skills. In addition, these individuals are
more likely to live independently and to attain better educational and employment outcomes (Beadle-Brown et al., 2000,
2006; Bernheimer et al., 2006; Keogh et al., 2004; Shevall et al., 2005). Higher functioning individuals with DD also exhibit
increased gain in adaptive and social skills (Beadle-Brown et al., 2000, 2006; Shevall et al., 2005). Increasing severity of DD
(i.e., lower cognitive functioning) has been shown to correlate with poorer outcome in adulthood (Bernheimer et al., 2006; de
Ruiter, Dekker, Verhulst & Koot, 2007; Emerson, Robertson & Wood, 2005; O’Brien, 2001; Shevall et al., 2005). Comparisons
between individuals with DD and matched individuals with both DD and autism have yielded variable results. Some
researchers suggested that individuals with DD demonstrate greater gains in adaptive and social skills compared to their
matched autistic peers (Beadle-Brown et al., 2000, 2006; Fisch, Simensen & Schroer, 2002; Jacobson & Ackerman, 1990;
Murphy et al., 2005; Seltzer et al., 2004) while others suggest that there are no significant differences between groups
(Chadwick et al., 2005a, 2005b). The discrepancy in results may be due to the populations sampled which included
individuals with range of DD severity with and without autism. The severity of DD is an important predictor of improvement
in skills. It will be important for future studies to examine outcomes in individuals with DD and DD and autism in a more
cohesive population.
Individual follow-up studies and meta-analyses, examining the changes in the cognitive profile of individuals with
autism over time, have produced variable results. Roughly 20–55% of individuals showed cognitive improvement (Ballabin-
Gil et al., 1996; Freeman et al., 1991; Howlin, Mawhood & Rutter, 2000; Mawhood, Howlin & Rutter, 2000; Venter et al.,
1992), 20–70% showed stable cognitive levels (Ballabin-Gil et al., 1996; Freeman et al., 1991; Howlin et al., 2004; Sigman &
McGovern, 2005) and 10–15% showed cognitive losses (Billstedt et al., 2005; Cederland, Hagberg, Billstedt, Gillberg, &
Gillberg, 2008; Freeman et al., 1991). Similar variability in cognitive profile is seen within the DD population at follow-up
(Beadle-Brown et al., 2000; Fisch et al., 2002; Hall et al., 2005; Shevall et al., 2005).
Follow-up studies evaluating the cognitive profile in autism have used a range of measures and have made comparisons
between full scale IQ and non-verbal and verbal scales. Hutton (1998), in studying the apparent deterioration in cognitive
ability from childhood to adolescence in his sample, found that the variable most predictive of decline was the type of test
that had been used to assess IQ in childhood. Individuals who, as children, were assessed on only verbal tests or on small
numbers of subtests from nonverbal scales, were far more likely to have shown significant ‘‘deterioration’’ in IQ than those
tested on nonverbal scales and a wider range of subtests. It is important to recognize that ‘‘deterioration’’ in IQ may not
reflect true deterioration in cognitive functioning. The individual’s raw scores may remain the same as his/her age increases
reflecting a plateau in skills versus deterioration; or, more commonly, raw scores and age-equivalents may increase but more
slowly than the individuals are aging (Hutton, 1998, as cited in Howlin, 2005). It is important for future studies to use
cognitive measures that are appropriate to the range of individuals included in the sample and that assess both verbal and
non-verbal abilities. As well, future studies should report on raw scores as well as age equivalents and not only standard
scores in order to more fully understand if cognitive level plateaus or decreases.
In terms of language development, few children who had not developed some useful speech by the age of 5–6 years were
reported to have positive outcome (Ando et al., 1980; Billstedt et al., 2007; Howlin, 2005; Lord & Venter, 1992; Lotter, 1974;
Szatmari, Bryson, Boyle, Streiner, & Duku, 2003). Speech has also been found to be an important predictor of outcome in the
DD population (Chadwick et al., 2005a, 2005b; Murphy et al., 2005; Seltzer et al., 2004; Sigman & McGovern, 2005). Overall,
follow-up studies found that about 20–30% of adolescents and adults with autism did not vocalize or use language
meaningfully (Ando & Yoshimura, 1979; Howlin et al., 2000; Kobayashi et al., 1992; Mawhood et al., 2000) and the remaining
70–80% continued to display some abnormalities in speech and language (Howlin et al., 2000; Kobayashi et al., 1992;
Mawhood et al., 2000; Schriberg et al., 2001; Shea & Mesibov, 2005). However, overall improvements in expressive and
receptive language skills from childhood to adulthood have also been found (Ballabin-Gil et al., 1996; Howlin, 2003; Howlin
et al., 2000; Kobayashi et al., 1998; Mawhood et al., 2000; Seltzer et al., 2003; Shea & Mesibov, 2005; Venter et al., 1992).
Follow-up studies evaluating the language profile in autism have used a range of measures and have been inconsistent in
their method of evaluating language. It is important for future research to evaluate language skills at follow-up more
systematically, including receptive and expressive language in the context of childhood language abilities. It is also
important to use measures that are sensitive to changes within this population.

3.3. Adaptive behaviour outcomes

Adaptive behaviour is an individual’s ability to complete everyday skills, as reported by a knowledgeable informant. It is
strongly correlated with cognitive level but is not equivalent to IQ test scores. The research on the trajectory of adaptive
behaviour skills has shown that both individuals with DD and individuals with autism demonstrate improvements in the
areas of everyday functional communication and daily living skills (Beadle-Brown et al., 2000, 2006; Chadwick et al., 2005a,
2005b). In individuals who exhibit gains, these gains are often not as substantial as changes in cognitive level. Studies have
shown that even individuals whose cognitive level at follow-up has progressed into the average range often demonstrate low
levels of adaptive behaviour (McEachin, Smith, & Lovaas, 1993). However, regardless of cognitive level, individuals with
autism display fewer gains in adaptive behaviour compared to both their typically developing and DD peers (Beadle-Brown
 A. Levy, A. Perry / Research in Autism Spectrum Disorders 5 (2011) 1271–1282 1275

et al., 2000, 2006; Di Nuovo & Buono, 2007; Jacobson & Ackerman, 1990; Matson, Dempsey, & Fodstad, 2009; Morgan et al.,
2002; Murphy et al., 2005). Similar to the findings in the cognitive and language outcomes literature, severe DD predicted
lower adaptive behaviour skills in both the DD and autism populations (Beadle-Brown et al., 2000, Bernheimer, Keogh &
Guthrie, 2006; O’Brien, 2001). Research on higher functioning individuals has yielded more variable results with some
findings indicating that even these individuals made few gains in adaptive skills (Green, Gilchrist, Burton, & Cox, 2000;
Howlin et al., 2000; Mawhood et al., 2000; Venter et al., 1992) and others indicating substantial gains (Byrd et al., 2002;
McEachin et al., 1993; McGovern & Sigman, 2005; von Knorring & Hägglöf, 1993).
Follow-up studies evaluating changes in adaptive behaviour have utilized a range of measures. In addition, studies have
evaluated different types of scores from measures (i.e., standard scores versus age-equivalents). Different scores will yield
different outcome patterns, standard scores evaluate absolute change compared to a typical population, and age-equivalents
examine relative progress within an individual over time. It is difficult to compare between studies that have different
conceptualizations of change in adaptive behaviour. It is important for future research to evaluate adaptive and maladaptive
behaviours more systematically.

3.4. Social outcomes

Studies on social outcomes in adolescents and adults with autism have focused on the education level, the employment
history, the degree of independent living and the social relationships of these individuals. Researchers investigating social
outcomes generally classify individuals according to ‘‘good’’, ‘‘fair’’ and ‘‘poor’’ outcomes, and results thus far suggest a
variable outcome. The following is an overview of outcome across several domains including: education, occupation and
living situation and social integration.
Trends in the literature are that the overall outcome for these individuals has improved from the 1960s to 70s. The mean
percentage of those individuals rated as having ‘‘good’’ outcomes in follow-up studies conducted before 1980 was about 10%.
The proportion has risen to 20% in the following two decades (Howlin et al., 2004; Kobayashi et al., 1992). In addition, the
‘‘poor’’ outcome ratings have declined from an average of 65–46% over the same period (Gillberg & Steffenburg, 1987;
Howlin et al., 2004; Kobayashi et al., 1992). The ‘‘fair’’ ratings have remained at approximately 25–30% (Howlin, 1997, 2005).
A review of the literature highlights a relationship between level of functioning and later progress. Higher functioning
individuals and individuals with Asperger’s syndrome tend to have better social outcomes in terms of independent living,
education level and job placement (Cederland et al., 2008; DeMyer et al., 1973; Engström, Ekström, & Emilsson, 2003;
Gilchrist et al., 2001; Howlin, 2005; Larsen & Mouridsen, 1997; Rumsey et al., 1984; Shea & Mesibov, 2005; Szatmari et al.,
1989).
The studies examining the social outcomes in this population span a forty-five year time period (1960s–2005). It should
be noted that, during this time period, there have been significant changes to the service system. For example, in Ontario, it
was only in 1984 that the Ministry of Education allowed for the inclusion of children with DD in regular classes (Winter,
2002) and only in the 1980s that specialized services for children with autism were empirically studied. These changes to the
service system are presumably related to improvements in social outcomes over this time period. It is important for future
research to account for the level of service individuals received.

3.5. Education, occupation and living situation

The major factor affecting social outcomes in adulthood is the adequacy of educational provisions and access to
appropriate education for later employment and social and economic independence. However, in terms of education,
approximately 50–60% of students with autism leave school without formal academic or vocational qualifications (Chung,
Luk, & Lee, 1990; DeMyer et al., 1973). A minority of these individuals, 5–40%, depending on the sample, attend and
successfully complete college or university (Cederland et al., 2008; Eaves & Ho, 2008; Howlin, 2005; Kobayashi et al., 1992;
Szatmari et al., 1989).
For those individuals who successfully complete mainstream education, employment levels in adulthood are
disappointing. The average percentage of these individuals who find work is 24%; however, job status and stability is
typically low (Ballabin-Gil et al., 1996; Barnhill, 2007; Eaves & Ho, 2008; Engström et al., 2003; Howlin, 2000; Howlin,
Alcock, & Burkin, 2005; Howlin et al., 2004; Lockyer & Rutter, 1969, 1970; Lotter, 1974; Rumsey et al., 1985; Venter et al.,
1992). It is important to note that some individuals do hold higher level, full-time, independent employment (Kobayashi
et al., 1992; Lockyer & Rutter, 1969, 1970; Lotter, 1974; Szatmari et al., 1989). Research has shown that job placement
programs are effective in this population (Mawhood et al., 2000; Persson, 2000). However, the majority of these programs
have focused on finding lower level jobs. Few programs have been designed to meet the needs of higher functioning
individuals (Howlin, 2005; Howlin et al., 2005).
Many of the adults continue to remain highly dependent on their families or other support services well into their late
20s. Even among the most able groups with only minor or borderline cognitive deficits, the majority of these individuals, 50–
60%, still live with their parents or in sheltered residential placements (Ballabin-Gil et al., 1996; Beadle-Brown et al., 2006;
Billstedt et al., 2005; Cederland et al., 2008; Chung et al., 1990; DeMyer et al., 1973; Eaves & Ho, 2008; Engström et al., 2003;
Gillberg, 1998; Green et al., 2000; Howlin, 2003, 2005; Howlin & Goode, 1998; Howlin et al., 2004; Kanner, 1971; Kobayashi
et al., 1992; Lotter, 1974; Rumsey et al., 1985; Seltzer et al., 2001; Venter et al., 1992). Only a small minority of these
1276 A. Levy, A. Perry / Research in Autism Spectrum Disorders 5 (2011) 1271–1282

individuals achieve independent living (Billstedt et al., 2005; Howlin & Goode, 1998; Howlin et al., 2000, 2004; Kanner, 1971;
Kobayashi et al., 1992; Gillberg & Steffenburg, 1987; Green et al., 2000; Mawhood et al., 2000; Szatmari et al., 1989; Venter
et al., 1992).
Similar outcomes have been reported within the DD population. A larger portion of these individual’s successfully obtain
a formal school completion award compared to individuals with autism (Johnson, Mc Grew, Bloomberg, Bruininks, & Lin,
1997; Keogh et al., 2004; Maughan, Collishaw, & Pickles, 1999). However, similar to individuals with autism, only a minority
of individuals attend and complete post-secondary education (Johnson et al., 1997; Hall et al., 2006). Community-based
employment rates vary from 0% to 67% depending on the severity of DD (Hall et al., 2005; Johnson et al., 1997; Maughan et al.,
1999; O’Brien, 2006). Similar to an autism population, relatively few individuals with severe disabilities work competitively
in the community. The majority of individuals were under-employed, with the most common form of employment being in
sheltered workshops (Beadle-Brown, Murphy, & Wing, 2005; Johnson et al., 1997; Keogh et al., 2004; Maughan et al., 1999;
O’Brien, 2006). Many of the adults remain highly dependent on their families or other support services (Beadle-Brown et al.,
2002, 2006; Chadwick et al., 2005a, 2005b; Cooper, Smiley, Morrison, Williamson, & Allan, 2007; Johnson et al., 1997; Keogh
et al., 2004; Maughan et al., 1999; O’Brien, 2006). Compared to the autism population, high functioning individuals with DD
are more likely to achieve independent living (Beadle-Brown et al., 2005; Hall et al., 2006; Johnson et al., 1997; Keogh et al.,
2004).

3.6. Social integration

In terms of friendships, the majority of outings and other social activities are organized by parents or care workers with
very little initiative or choice on the part of the individuals themselves (Ballabin-Gil et al., 1996; Chung et al., 1990; Engström
et al., 2003; Howlin, 2003, 2005; Howlin et al., 2000; Mawhood et al., 2000; Renty & Roeyers, 2006; Rumsey et al., 1985;
Szatmari et al., 1989; Venter et al., 1992). However, a minority of individuals develop lasting friendships and relationships
(Eaves & Ho, 2008; Howlin, 2005; Kanner, 1971; Szatmari et al., 1989). In most studies, 5–10% of participants have married or
have long-term sexual relationships (Eaves & Ho, 2008; Howlin et al., 2004; Kobayashi et al., 1992). Information on parenting
was limited, as the majority of the studies have not included participants of appropriate ages.
It is important to consider the impact of services provided for individuals in childhood on social outcomes. Effective
intervention programs for adults with autism are successful in increasing independence, skills and quality of life (Howlin,
2003, 2005; Persson, 2000). Interventions have significantly improved for individuals with autism in the last decade.
Research has been conducted to investigate the impact of these services in childhood and it is assumed that these programs
impact long-term outcome as well. However, it is important to investigate the impact of these services more systematically.
Comparatively, studies have found more improved social outcomes for the DD population. Although the degree of
independence and community mobility varied by degree of DD, overall, individuals report greater levels of community
involvement and social integration compared to individuals with autism (Bernheimer et al., 2006; Hall et al., 2006; Johnson
et al., 1997; Maughan et al., 1999). Individuals within this population are also more likely to have long-term romantic
relationships, marry and have children (Hall et al., 2006; Maughan et al., 1999). However, compared to the typically
developing population, social outcomes are still poor in this population and available support networks are still limited
(Beadle-Brown et al., 2006; Hall et al., 2006; Johnson et al., 1997; Keogh et al., 2004; Maughan et al., 1999; O’Brien, 2001).
Comparisons among the studies of social outcomes in individuals with autism should be made with caution. These
studies have included very different samples and measures for evaluating outcome. The majority of ratings have based their
outcome ratings on the system established by Lockyer and Rutter (1970). However, these categories are not always clearly
operationalized nor do all studies establish or report inter-rater reliability for these categorical ratings. It is, therefore,
difficult to compare ratings across studies. It is important for future research to clearly operationalize outcome categories
and ensure that these categories are reliable. In addition, the outcome categories defined by Lockyer and Rutter (1970) are
based on outcomes in a higher functioning population and are not sensitive to outcomes in lower functioning individuals.
According to this system, these latter individuals are automatically classified as ‘‘poor’’ outcome. It would be helpful
important to specify more sensitive outcome categories to capture variability in outcome among low functioning individuals
as well as higher functioning individuals.

4. 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, Dawson, Estes, & Greenson, 2008). This is higher than the 5–49% range reported
in the DD population (Brereton, Tongue & Einfeld, 2006; Chadwick et al., 2005a, 2005b; Chang et al., 2003; Cooper et al.,
2007; Cormack, Brown, & Hastings, 2000; Davis, Saeed, & Antonacci, 2008; Dekker, Koot, van der Ende, & Verhulst, 2002; Di
Nuovo & Buono, 2007; Dykens, 2000; Einfeld et al., 2006; Emerson, 2003; Leyfer et al., 2006; LoVullo & Matson, 2009; Määttä,
Tervo-Määttä, Taanila, Kaski, & Iivanainen, 2006; Mantry et al., 2008; Matson, Dempsey, & Rivet, 2009; Smith & Matson,
2010a; StrØmme & Diseth, 2000; Tonge & Einfeld, 2000; Totsika, Toogood, Hastings, & Lewis, 2008; Wallender, Dekker &
Koot, 2006; Whitaker & Read, 2006). Studies comparing DD individuals and individuals with autism have suggested that
autism cohorts have significantly greater levels of overall psychopathology and levels of disruptive behaviour (Bradley,
Summers, Wood & Bryson, 2004; Brereton et al., 2006; Chadwick et al., 2000; Gilliot & Standen, 2007). The majority of
 A. Levy, A. Perry / Research in Autism Spectrum Disorders 5 (2011) 1271–1282 1277

individuals with autism developed psychiatric difficulties prior to the age of 30 (Hutton, 1998, as cited in Howlin, 2005). The
most prevalent psychiatric disturbances reported were those related to anxiety and depression (Abramson et al., 1992;
Barnhill, 2007; Bradley et al., 2004; Ghaziuddin, Weidmer-Mikhail & Ghaziuddin, 1998; Gilliot & Standen, 2007; Howlin,
2004, 2005; Lainhart & Folstein, 1994; Ozonoff, Garcia, Clark & Lainhart, 2005; Palucka & Lunsky, 2007; Sterling et al., 2008;
Tantam, 2000; Tsankanikos et al., 2006). Literature reviews have found that generalized anxiety disorders, agoraphobia,
separation anxiety and simple phobias were the most common disorders and were reported in 7–84% of cases (Eaves & Ho,
2008; Howlin, 2005; Hughs, 2008; Lainhart, 1999; Leyfer et al., 2006; Simonoff et al., 2008; White, Oswalkd, Ollendich &
Scahill, 2009). There may be genetic loading for affective disorders in individuals with autism. In the majority of cases in
which an affective disorder was diagnosed, there was a family history of depression or suicide (Lainhart, 1999; Lainhart &
Folstein, 1994). There was a higher incidence of mood and anxiety disorders in families of children with autism compared to
relatives of individuals with DD (Bolton, Pickles, Murphy & Rutter, 1998; Lainhart, 1999). Other co-morbid psychiatric factors
within this population included Obsessive Compulsive Disorder, Attention Deficit Hyperactivity Disorder, Tourette’s
Disorder and medical disorders such as Epilepsy (Billstedt et al., 2005; Eaves & Ho, 2008; Ghaziuddin et al., 1998; Gilliot &
Standen, 2007; Howlin, 2005; Hughs, 2008; Hutton, Goode, Murphy, Le Couteur & Rutter, 2008; Kim, Szatmari, Bryson,
Streiner & Wilson, 2000; Lainhart, 1999; Shea & Mesibov, 2005).
There have also been a number of case reports on the comorbidity of autism and schizophrenia. These cases suggested a
high rate of schizophrenia in this population (Chang et al., 2003; Clarke et al., 1988; Volkmar & Cohen, 1991; Waterhouse &
Fein, 1984). However, large scale studies of individuals with autism have failed to find any evidence of increased rates of
schizophrenia (Howlin, 2005; Lainhart & Folstein, 1994; Seltzer et al., 2004; Shea & Mesibov, 2005). The literature has
reported isolated psychotic symptoms including delusional thoughts (Bryson & Smith, 1998; Howlin, 2005; Ghaziuddin
et al., 1998; Lainhart, 1999; Volkmar & Cohen, 1991; Wozniak et al., 1997), various unspecified psychoses (occasionally
associated with epilepsy) (Nylander & Gillberg, 2001; Ozonoff et al., 2005; Palucka & Lunsky, 2007; Volkmar & Cohen, 1991),
paranoid ideation (Nylander & Gillberg, 2001), mania (Howlin, 2004; Wozniak et al., 1997) catatonia (Billstedt et al., 2005;
Hutton et al., 2008; Lainhart, 1999; Wing & Shah, 2000) and hallucinations (Howlin, 2005). However, differential diagnosis of
psychotic features in autism is very difficult and symptoms must be interpreted with caution. Obsessionality, flattened
affect, poor eye contact, unusual body movements and echoed speech that are typical of autism may be misinterpreted as
symptoms of psychosis (Howlin, 2005; Tsankanikos et al., 2006). In addition, impoverished language, literal interpretation of
questions, concrete thinking and decompensation under stress are additional sources of confusion (Howlin, 2005; Lainhart,
1999).
Historically, it has been difficult to diagnose psychiatric conditions in individuals with autism (Lainhart, 1999; Simonoff
et al., 2008; Tsankanikos et al., 2006). Where other psychiatric conditions existed, the presenting complaint was rarely
articulated by the individual but was observed by caretakers (Lainhart, 1999; Tsankanikos et al., 2006). Reported behavioural
changes included: new, worsened or chronic agitation, aggression, self-injurious behaviour, destructiveness, temper
outbursts, social withdrawal and vegetative changes, mood swings, new, odd or worsened repetitive behaviour. It is
important to have a baseline for behaviour in order to detect deterioration in cognition, language, behaviour or activity
(Hutton et al., 2008; Lainhart & Folstein, 1994; Smith & Matson, 2010b). In addition, these behaviours are often attributed to
the diagnosis of autism and not symptoms of additional psychopatholgy, a phenomenon known as diagnostic
overshadowing (Simonoff et al., 2008).
Inpatient studies of individuals with autism and comorbid diagnoses have reported longer than average hospital
admissions, a higher use of mechanical or medical restraints and a higher use of psychotropic medications compared to other
developmentally disabled populations (Bradley et al., 2004; LoVullo & Matson, 2009; Palucka & Lunsky, 2007; Tsakanikos,
Sturmey, Costello, Holt, & Bouras, 2007). The treatment for additional psychiatric disorders is a concern not only in autism
but in the larger DD population (Cooper & Smiley, 2007; Di Nuovo & Buono, 2007; Fisher, 2004; Hassiotis et al., 2008; Hurley,
2008; Lunsky, Garcin, Morin, Cobigo & Bradley, 2007; Wright, Williams & Richardson, 2008). There is a general paucity of
research to provide guidance to clinicians and managers as to the most suitable services to use or design for these
populations (Chaplin, 2004).
The majority of studies that have examined psychiatric comorbidity have relied on case reports (Abramson et al., 1992;
Bryson & Smith, 1998; Clarke et al., 1989; Howlin, 2004; Palucka & Lunsky, 2007; Tantam, 1991; Tsakanikos et al., 2007;
Volkmar & Cohen, 1991). It was only recently that standardized measures have been used to classify disorders (Bolton et al.,
1998; Bradley et al., 2004; Ghaziuddin et al., 1998; Nylander & Gillberg, 2001; Wozniak et al., 1997). Few appropriate
measures have been designed to evaluate psychopathology in individuals with autism and DD, particularly those with severe
to profound IQ levels. It is important for future studies to utilize standardized measures designed to measure
psychopathology in this population rather than relying on case reports to ensure accurate diagnosis.
Within the DD population, a number of child, family and contextual factors have been identified as increasing the risk of
developing mental health problems in adulthood. The child factors that have been identified include: severity of disability (in
terms of both IQ and level of functional skills), increasing age, gender and earlier psychopathology. Increased severity of
disability and increased age are associated with increased psychopathology and behavioural difficulties. It is has also been
suggested that males are at higher risk of developing additional psychopathology and that early psychopathology increases
an individual’s risk of later mental health concerns (Chadwick et al., 2000; Clarke & Clarke, 1988; Cooper & Smiley, 2007;
Cormack et al., 2000; de Ruiter et al., 2007; Dekker et al., 2002; Di Nuovo & Buono, 2007; Dykens, 2000; Emerson, 2003;
O’Brien, 2001; Simonoff et al., 2008; Wallender et al., 2006). The family factors that have been identified include: family
1278 A. Levy, A. Perry / Research in Autism Spectrum Disorders 5 (2011) 1271–1282

composition, harsh child management practices, family functioning, parental mental health and higher number of stressful
life events. Individuals from less stable families, in high risk situations are at greater risk of developing psychopathology in
adolescence and adulthood. As well, children of parents with mental health concerns are at greater risk (Cooper & Smiley,
2007; Dykens, 2000; Emerson, 2003; Simonoff et al., 2008; Wallender et al., 2006). The contextual factors that have been
identified include: socio-economic status and social deprivation. Individuals from lower SES families with greater levels of
socio-economic adversity are at increased risk (Cooper & Smiley, 2007; Dykens, 2000; Emerson, 2003; Simonoff et al., 2008).
However, initial research into psychopathology in autism has suggested that, although these comorbid diagnoses are
common and frequently multiple, there were few associations with these child, family and contextual risk factors (Charman,
Siminoff, Pickles, Jones & Baird, 2009; Simonoff et al., 2008). In a 2008 study, Simonoff and colleagues found that psychiatric
comorbidity was not associated with child factors such as autism diagnosis, adaptive behaviour or cognitive abilities. In
addition, no significant associations were found for any of the family characteristics mentioned above. This finding raises the
question of whether the aetiology of comorbid psychopathology in autism is different from the aetiology in a non-autism
population. Further work is needed to understand the surface and underlying phenomenology of autism and
psychopathology (Charman et al., 2009; Simonoff et al., 2008).

5. 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, Mouridsen & Rich, 1999; Mouridsen, BrØnnum-Hansen, Rich, & Isager, 2008;
O’Brien, 2001; Shavelle, Strauss & Pickett 2001; Tyler, Smith, McGrother & Taub, 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 particular epilepsy, and/or accidents, have been
known to contribute to some early deaths in this population (Mouridsen et al., 2008). However, individuals with autism had
fewer risk factors, such as smoking, drinking, alcohol, traffic and occupational accidents and suicide, associated with typical
adult lifestyles (Lainhart, 1999; Shea & Mesibov, 2005). Despite the higher mortality rates, the vast majority of individuals
with autism lived through middle age (Shea & Mesibov, 2005).

6. 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 maturational course. The literature further suggests that outcomes for this population are
dependent on factors such as autism severity, cognitive functioning, language development, additional psychopathology and
access to intervention programs and services.
However, there are a number of significant limitations to this pool of literature. The studies that have examined outcomes
in this population have spanned a wide time period. As a result, there were large differences in the services available to the
individuals studied, and, therefore, the results may not accurately reflect the outcomes for more recent cohorts of individuals
with earlier and more comprehensive diagnosis and service provisions.
In addition, the majority of these studies have included small samples of predominantly higher functioning individuals.
The autism spectrum is broad and there are significant differences between high-functioning autism or Asperger’s syndrome
and the more severe manifestations of this disorder. Research on outcomes in higher functioning individuals cannot be
generalized to lower functioning individuals. Further, given the finding that outcome is dependent on factors such as
cognitive and language level and autism severity, it would be important to understand if these predictors are true for a lower
functioning population. Unfortunately, only a small number of studies have focused on these individuals.
Additionally, the predominant system of classifying outcome (Lockyer & Rutter, 1970) was designed to evaluate a high-
functioning population. It is largely insensitive to outcomes in lower functioning individuals with autism who, according to
this system, would automatically be classified as ‘‘poor’’ outcome. Very little research has examined whether there is any
variability in outcome in low functioning adolescents and adults with autism.
Comparison between the results of outcome studies is also difficult. These studies have utilized a range of methodologies
and measures. This is, in part, due to the large time span over which these studies have occurred. However, this makes
comparison difficult. In addition, the majority of studies have examined one aspect of outcome (i.e., cognitive outcome or
psychopathology). None of the studies in the literature have completed a comprehensive outcome evaluation examining all
aspects reviewed above.

7. 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
 A. Levy, A. Perry / Research in Autism Spectrum Disorders 5 (2011) 1271–1282 1279

necessary to evaluate lower functioning individuals with autism in order to more sensitively describe outcomes in this
population. Moreover, comprehensive studies are needed that address multiple domains of outcome (i.e., diagnostic
severity, cognitive, language and academic functioning, adaptive behaviour, social outcomes and comorbid psychopathol-
ogy) in order to truly understand outcomes in this population. As the question of how best to support a growing number of
adults with autism becomes increasingly more important, this research is needed in order to understand the needs of, and
services and supports required for, all individuals with autism as they move from childhood into adolescence and adulthood.

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.

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