Table 1.

Selected Outcome Studies of Adults with Autism

Study	Sample	Criteria for Overall Outcome	Overall Outcome Results	Other results
Rutter, Greenfeld, & Lockyer, 1967	63 individuals with an average age of 16 Infantile psychosis	Good = normal or near-normal social life and functioning satisfactorily at school or work; Fair = making social and educational progress despite social abnormalities; Poor = severely handicapped, but some potential for social progress; Very poor = unable to lead any kind of independent existence	Good: 14% Fair: 25% Poor: 13% Very poor: 48%	Employed: 5% Institution: 53% (for those 16 years and older)
Lotter, 1974	32 individuals ages 16–18 at follow up in Middlesex, UK Autism	Rutter’s criteria	Good: 14%; Fair: 24%; Poor: 14%; Very poor: 48%	Employed: 4%; Institution: 48%
Gillberg & Steffenburg, 1987	46 individuals ages 16–23 in Goteborg, Sweden Infantile autism and other childhood psychoses	Rutter’s criteria, plus Restricted but Acceptable category = characteristics of poor group but who have nevertheless been accepted by a group of peers or personnel to such an extent that their handicaps are not so readily obvious	Good: 4%; Fair: 13%; Restricted but acceptable: 22%; Poor: 44%; Very poor: 15%	Employed: 4% Institution: 44%
Larsen & Mouridsen, 1997	18 adults in Denmark, average age 36 years Asperger’s Syndome and childhood autism	Rutter’s criteria	Good: 28% Fair: 28% Poor: 16% Very poor: 28%	Employed: 22% Institution: 56%
Engstrom, Ekstrom, & Emilsson, 2003	16 adults over the age of 18 with an IQ > 70 in the Orebro county of Sweden High functioning autism and Asperger’s Syndrome	Rutter’s criteria	Good: 12% Fair: 75% Poor: 12% Very poor: none	Independent employment: 6% Living independently: 6% Living in own home with support: 50%
Billstedt, Gillberg, & Gillberg, 2005	120 individuals ages 17–40 in Goteborg Sweden Autistic disorder and atypical autism	Good = (a) being employed or in higher education and (b) if over the age of 23 years, living independently, if 22 years or younger, having 2 or more friends/a steady relationship; Fair = either (a) or (b) under Good outcome; Restricted but acceptable = neither (a) nor (b) under Good outcome, and not meeting criteria for a major psychiatric disorder other than autistic disorder or another autism spectrum disorder; Poor = obvious severe handicap, no independent social progress, some clear verbal or non-verbal communicative skills; Very poor = obvious severe handicap, unable to lead any kind of independent existence, no clear verbal or non-verbal communication	Good: none Fair: 8% Restricted but acceptable: 13% Poor: 21% Very poor: 57%	Living independently: 3%;
Cederlund, Hagberg, Billstedt, Gillberg, & Gillberg, 2008	70 males in Goteborg, Sweden ages 16–36 Autistic disorder	Billstedt, Gillberg, & Gillberg, 2005 criteria	Good: none Fair: 7% Restricted: 12% Poor: 20% Very poor: 56%	Ordinary job: 1% Living independently: 8% (for those 23 years and older)
Kobayashi, Murata, & Yoshinaga, 1992	201 individuals ages 18–33 in Japan Autism	(1) Language Development: Very good = can communicate freely with a rich vocabulary; Good = can communicate, but unnaturally and sometimes inappropriately; Fair = can understand others in daily life, but cannot communicate verbally; Poor = vocalizes echolalic speech mostly in single words; Very poor = vocalizes “words” of no meaning, or does not talk; (2) Adaptive Functioning: Very good = employed (or goes to school) and adapts satisfactorily; Good = employed (or goes to school), lives a normal life almost independently; Fair = behaves a little inappropriately but lives a daily life at home, or not employed but lives a daily life with a little aid; Poor = has poor social skills, cannot adapt socially, always needs much aid	(1) Language Development – Very good: 16% Good: 31% Fair: 32% Poor: 9% Very poor: 12%; (2) Adaptive Functioning – Very good: 11% Good: 16%; Fair: 27%; Poor: 23%; Very poor: 23%	Employed: 21% Lives in a special care unit: 38% Hospital: 2%
Howlin, Mawhood, & Rutter, 2000	19 adult males age 21 to 26 years Autism	Composite Rating: Autistic type stereotyped and repetitive behaviors (none/minimal problems to severe problems) = 0–6; Language (sentences with mature grammar, understands 2–3 step instructions, conversation flows with others, and able to build on other person’s dialogue to none of those = 0–2; Friendship (normal friendships with people own age and sharing activities to no friends) = 0–2; Independence (fully independent in self-care activities to little or no independence) = 0–2 Composite score: Near normal functioning = 0–1; Moderate difficulties = 2–4; Considerable levels of difficulties = 5–8	Near normal functioning = 16% Moderate difficulties = 10% Considerable levels of difficulty = 74%	Never competitively employed: 74% Living independently: 16% No friends with shared interests: 47%
Howlin, Goode, Hutton, & Rutter, 2004	68 adults ages 21–48 with an IQ > 50 in London Autism	Overall Outcome Rating: Work (employed to unemployed) = 0–3 points; Friendship (>1 close friend to no friends) = 0–3 points; Independence (living independently to in hospital) = 0–5 points Composite Score - Very good = 0–2 points; through Very poor = 11 points Very good = high level of independence; Good = generally in work but requiring some degree of support in daily living; Fair = some degree of independence, and although requires support and supervision does not need specialist residential provision; Poor = requiring special residential provision / high level of support; Very poor = needing high-level hospital care	Very good: 12%; Good: 11%; Fair: 19%; Poor 46%; Very poor: 12%	Employed: 34%; Independently employed: 13%; Living independently: 5%; Long stay hospital: 13%;
Eaves & Ho, 2008	48 individuals born from 1974–1984 Autism	Overall Outcome Rating (Howlin et al., 2004)	Very good: 4% Good: 17% Fair: 32% Poor: 46% Very poor: none	Independently employed: 4% Living independently: 8% Close friendship(s): 33%
Gillespie-Lynch et al., 2011	20 individuals diagnosed from late 1970s to early 1980s Autism	Modification of Overall Outcome Rating (Eaves & Ho, 2008; Howlin et al., 2004) Very good = residential and employment independence as well as some friendships; Good = either paid or voluntary employment with some degree of support in daily living and some friendships or acquaintances; Fair = some supported independence and acquaintances but no close friendships; Poor = requires a high level of support and has few social contacts; Very poor = living in a hospital	Very good: 20% Good: 10% Fair: 20% Poor: 50% Very poor: none	Living independently: 15% Full-time employment: 20%
Esbensen, Bishop, Seltzer, Greenberg, & Taylor, 2010	70 adults with comorbid ID, ages 22 years and older Autism spectrum disorder	Modification of Overall Outcome Rating (Eaves & Ho, 2008; Howlin et al., 2004) Residential independence (hospital/institution to living independently) = 0–4; Social contact with friends (never visiting with friends or seeing them less than yearly to seeing friends more than once per week) = 0–4; Vocational independence (volunteer work or no formal day activity to competitive employment) = 0–4 Composite score: 0–2 = very low independence; 3–5 = low independence; 6–8 = moderate independence; 9–11 = high independence; 12 = very high independence	Very high: 2% High: 9% Moderate: 28% Low: 45% Very low: 16%
Farley, et al., 2009	41 individuals in Utah within near-average or average range of cognitive functioning Autistic disorder	Modification of Overall Outcome Rating (Eaves & Ho, 2008; Howlin et al., 2004) Very good = paid employment without any extra supports to perform duties, existence of important social relationships, and a high level of independence in daily life; Good = generally high level of independence in work and home life with some extra support, at least one friendship or some acquaintances; Fair = need for regular support in work or home life but no need for a special residential facility; Poor = need for very high level of support, such as that provided through a special residential facility and day programming for people with developmental disabilities; Very poor = need for a high level of care in a hospital setting with no autonomy, no friendships	Very good: 24% Good: 24% Fair: 34% Poor: 17% Very poor: none	Living independently: 12% Have a driver’s license: 27% Full-time employment: 27%
Billstedt, Gillberg, & Gillberg, 2011	108 of 120 individuals from the 2005 sample Autistic disorder and atypical autism	(1) Autism-Friendly Environment (scale of 1–5, very good to very poor, for each category): (a) staff and caregivers have specific autism knowledge, (b) applied structured education implemented, (c) individual specific treatment/training plan for the person with autism implemented, (d) occupation or everyday life activity corresponding to his/her level of capacity, (e) overall quality of life (2) Parent/Carer Rating of Individual’s Well-Being in the residential setting (scale of 1–5, very good to very poor)	(1) Mean category percentages – Very good: 20% Good: 51% Fair: 13% Poor: 14% Very poor: 1% (2) Very good: 61% Good: 30% Fair: 5% Poor: 2% Very poor: 2%	Living independently: 4%; No daytime occupation: 18%