Anemone's Research Emporium

Outcome (employment, independence) in autistic adults

Anemone Cerridwen
April 10, 2009

This is a brief summary of the research I have come across on outcome in autistic adults, in particular rates of employment and independent living.

Rutter, M., Greenfield, D., and Lockyer, L., 1967. A five to fifteen year follow-up of infantile psychosis: II. Social and behavioural outcome. British Journal of Psychiatry, 113, 1183-1189.

UK. Sixty-three children with infantile psychosis (autism confirmed in follow-up) and sixty-one controls matched for age, sex and IQ were followed up about ten years later at a mean age of 15 years 7 months (16 years 5 months for the controls). At follow-up only two of the thirty-eight psychotic children age 16+ had jobs compared to twelve of the thirty-six controls age 16+. Five more did some sort of work in sheltered situations. Fourteen were still in school. Thirty-one lived in institutions of one sort or another. No information was given about where the employed individuals lived.

Leo Kanner, 1971. Follow-up Study of Eleven Autistic Children Originally Reported in 1943. Journal of Autism and Childhood Schizophrenia 1971 1:119-145.

Retrieved on March 4, 2009 from http://www.neurodiversity.com/library_kanner_1971.html

USA. Of the original eleven children (eight boys, three girls) described by Kanner in 1943, two boys were fairly high functioning as adults, twenty-eight years later. One man, age 36, was living with his parents, worked as a bank teller, and played golf. Another man, age 34, also lived with his parents, worked in a job connected with duplicating machines, and enjoyed bowling. His employer praised his dependability, reliability, thoroughness and thoughtfulness toward fellow employees. Of the remaining nine children, two men could not be located, one man had died suddenly age 29, one man lived with his foster mother and helped her with the nursing home she ran, and the remaining two men and all three women were living in institutions indefinitely. It was fairly obvious that the children who were institutionalized fared the worst, in that institutionalization seemed to take the life out of them.

Leo Kanner, Alejandro Rodriguez and Barbara Ashenden, 1972. How Far Can Autistic Children Go in Matters of Social Adaptation? Journal of Autism and Childhood Schizophrenia 2:9-33.

Retrieved on March 4, 2009 from http://www.neurodiversity.com/library_kanner_1972.html

USA. Of the 96 children diagnosed with autism at the John Hopkins Hospital prior to 1953, Kanner et al. were able to track down nine (eight male, one female) who had had good outcomes in adulthood, in addition to the two men described in Kanner (1971, above). By the time of follow-up, these people ranged in age from 22 to 35. Three of the men lived with parents, one of them working in his father's drug store; one man was a full time student who lived in residence at university, and the others lived independently, renting or owning their own homes. Apart from the student and the man working in his father's drug store, these people all worked independently in a variety of jobs. Some of them had dated sporadically but none of them were married. What these nine (and the two in the previous paper) had in common that distinguished them from Kanner's other diagnosed subjects was that they had all had some degree of speech before age 5, and none of them had been institutionalized.

Lotter, V., 1974. Social adjustment and placement of autistic children in Middlesex: A follow-up study. Journal of Autism and Childhood Schizophrenia, 4, 11-32.

UK. Twenty-nine of thirty-two children diagnosed at age 8 to 10 in an epidiomological survey were followed up at age 16 to 18. A group of similar children whose symptoms were not severe enough for a diagnosis of autism in the same survey were retained as a comparison group. At follow-up, one of the autistic children was employed, compared to five of the twenty-nine in the control group; seven were in a special school (compared to two); five were in a training center (compared to six); fourteen were institutionalized compared to four in the comparison group.

Judith M. Rumsey, Judith L. Rapoport, and Walter R. Sceery, 1985. Autistic children as adults: Psychiatric social and behavioural outcomes. Journal of the American Academy of Child Psychiatry, 24, 465-473.

US. Follow-up of fourteen men, age 18 to 39 (mean age 28) diagnosed with infantile autism in childhood. Seven of these men had been diagnosed by Kanner and so may also be included in his numbers above. Nine subjects were of normal intelligence while another three were normal on the WAIS performance scale but not on the verbal scale. Only two subjects out of the fourteen were not high functioning based on their IQ.

Four men worked in menial jobs. Two of these lived with their parents and two lived in their own apartments with weekly visits from a counsellor. Three more men worked in sheltered workshops and the remainder were either unemployed or were in training programs or school. One of the unemployed men lived in his own apartment. One man lived in a group home and one lived in a state hospital. Nine (including the two listed above) lived with parents.

Gillberg, C., and Steenburg, S, 1987. Outcome and prognostic factors in infantile autism and similar conditions: A population-based study of 46 cases followed through puberty. Journal of Autism and Developmental Disorders, 17, 272-288.

Sweden. Follow-up of population based study. More than 90% of the children were included in the follow-up. There were twenty-three autistic subjects, age 16 to 23 (seventeen males, six females). An additional twenty-three subjects age 16 to 23 had been diagnosed with childhood schizophrenia (CS) (twelve males, eleven females). Nine autistic and thirteen CS subjects had IQs below 50 before age 6, eight autistic and five CS subjects had IQs between 50 and 70, and six autistic and five CS subjects had IQs of 70+. At the time of follow-up, one autistic male, age 20, was self-supporting, one CS female had died, twenty subjects lived with their parents and twenty-one were in institutions. The other three lived with foster parents.

Szatmari, P., Bartolucci, G., Bremner, R., Bond, S., and Rich, S., 1989. A follow-up of high-functioning autistic children. Journal of Autism and Developmental Disorders, 19, 213-225.

Canada. The authors identified forty-five high-functioning autistic children born before 1970 from the records of a center specializing in autistic children in Toronto. They were able to locate twenty for follow-up, and reported data for sixteen (one had died, one was mentally retarded and therefore too low functioning for the study, and two had questionable diagnoses). Of the sixteen subjects, twelve were male, four female. Ages ranged from 17 to 34 and averaged 26.1 years old. Mean IQ was 92.4 (range 68 to 110). One man was married, lived with his wife, and was an MBA student. Two men and one woman worked and lived independently while an additional two men and one woman worked independently but lived with their parents. One woman worked for the family firm and lived with family while three men (one in a group home, the others living with family) worked in sheltered workshops. An additional man and woman were students living with family, and two men were unemployed, one with his own apartment and one living with family. Half the subjects had at least some postsecondary education, with six of these holding university degrees.

This is a high functioning sample compared to other studies listed here (IQs generally above 70). In addition, all of the highest functioning subjects came from well-off families, with mothers who advocated on their behalf growing up. Also, these subjects are older, and more intelligent on average than in other studies.

Tantam, D. (1991). Asperger's syndrome in adulthood. In U. Frith (Ed.), Autism and Asperger syndrome (pp. 147-183). Cambridge : Cambridge University Press.

UK. Tantam reports data for adults with Asperger syndrome from his own PhD thesis and from a mostly unpublished Department of Health and Social Security report. His own thesis studied forty-six adults (average age 24.4, with a male:female ratio of 6:1) who qualified for a diagnosis of Asperger syndrome, while the other study looked at ninety-three able autistic people (average age 23; male:female ratio 10:1). Because this is Asperger syndrome, subjects would have had IQs in the normal range (70+). He reports current employment rates of 4% and 11% respectively, and independent living rates of 3 and 7% respectively. He does not report the age range or the percentage of females. Most of the subjects were living with parents (41%, 71%) or in residential care (53%, 16%).

Kobayashi, R., Murata, T., and Yashinaga, K. (1992). A follow-up study of 201 children with autism in Kyushu and Yamguchia, Japan. Journal of Autism and Developmental Disorders, 22, 395-411.

Japan. The authors tracked down 201 young adults age 18 to 33 (mean age 21.8), most of whom had participated in therapeutic interventions since their diagnosis. 166 men and 31 women were still alive, and four male subjects had died. At follow-up, thirty-five men and six women were employed, with two additional men working for their family's business. Of these forty-three subjects, two lived in their own apartments, one was in a group home, and the others lived with their parents. Eleven subjects (ten male, one female) were in school, while twenty-seven worked in sheltered workshops (twenty-four male, three female). Seventy-nine were in institutions. One of the factors cited for the high employment rate here was a booming economy.

Karen Ballaban-Gil, Isabelle Rapin, Roberto Tuchman, and Shlomo Shinnar (1996) Longitudinal examination of the behavioral, language, and social changes in a population of adolescents and young adults with autistic disorder. Pediatric Neurology 15:217-223

USA. Follow up of fifty-four adolescents (12 to 18 years old) and forty-five adults (18 to 29.5 years old) out of a sample of 163 people originally diagnosed with an autistic spectrum diagnosis in childhood (61% of original sample were followed up). 29% of the forty-five adults were of normal or near normal intelligence, 22% were mildly mentally retarded and 47% were severely mentally retarded (2% were indeterminate). The male:female sex ratio was 3:1.

At follow up one man was living semi-independently, with support from social workers. The rest lived with family or in institutions. Twenty-seven percent of the adults were working in some capacity or other: five were working independently in menial jobs, while six were in sheltered workshops. Two adolescents worked part time on their own.

Patricia Howlin, Lynn Mawhood and Michael Rutter, 2000. Autism and Developmental Receptive Language Disorder - a Follow-up Comparison in Early Adult Life. II: Social, Behavioural, and Psychiatric Outcomes. Journal of Child Psychology and Psychiatry 41: 561-578.

UK. This study followed up on forty-seven adult male subjects with either autism or developmental receptive language disorders who had originally been studied in childhood. There were nineteen autistic men in this study (all of the autistic subjects from the original study), ranging in age from 21 to 26. At this age none had married and only one had had a close heterosexual relationship. Three were living independently or semi-independently, while six lived with their parents and ten were in institutions of one sort or another (nine in residences in the community, one in a hospital). Only one was working independently, another one was mostly employed while a third had worked intermittently. Two were still in school. The rest had never been in paid employment.

Patricia Howlin, 2003. Outcome in High-Functioning Adults with Autism With and Without Early Language Delays: Implications for the Differentiation Between Autism and Asperger Syndrome. Journal of Autism and Developmental Disorders, 33: 3-13.

UK. The purpose of this study was to compare classic autism and Asperger syndrome, rather than to look at adult outcome per se. The subjects were selected from patients attending a specialist diagnostic and assessment clinic for adults with development disorders. All subjects had a nonverbal IQ of at least 70 and were more than 18 years old. Thirty-four (twenty-five men, nine women) had had language delays in childhood and were considered to have classic autism (average age 27.6), while an additional forty-two (thirty-five men, seven women) were considered to qualify for Asperger syndrome (average age 26.1), for a total of seventy-six adults (21% female).

There was no significant difference between the two groups on employment or independent living. The only significant difference between the two groups was that the Asperger group reached a higher level of education than the classic autism group. Of the total group of seventy-six, ten were still in school, thirty-six were in some sort of employment (including sheltered employment) and twenty-six were living independently or semi-independently. Three men were married and one had children. One woman was divorced. Forty-five still lived with their parents, while sixteen of the twenty-six who lived independently or semi-independently still needed help from family or social services. Five lived in institutions of some sort or other (one in a hospital). Four had relatively well paid permanent employment, while six were in sheltered jobs or worked for their families. The remaining twenty-six worked but not enough to support themselves.

Patricia Howlin, Susan Goode, Jane Hutton, and Michael Rutter, 2004. Adult outcome for children with autism. Journal of Child Psychology and Psychiatry 45(2): 212-229.

UK. This study looked at sixty-eight adults (sixty-one male, seven female) age 21 to 48, out of seventy-nine who had been referred to the Children's Department at Maudsley Hospital, London and diagnosed with an autistic disorder in childhood, and had a childhood nonverbal IQ of at least 50. At the first follow-up, twenty-three (second follow-up: thirty-six) were in some sort of work, though only eight were working independently and were financially independent (at both times). Twenty-six still lived with their families, three lived independently and four lived in semi-sheltered hostel-type accommodations. Thirty-four of the subjects lived in institutions. One woman had a sheltered job and none of the women lived independently. Of the sixty-eight subjects, eight were fairly independent, with six of them in paid employment, but only two were actually independent of financial/social/emotional support. At the time of the second follow-up, two men were married and one man was divorced.

Mats Cederlund, Bibbi Hagberg, Eva Billstedt, I. Carina Gillberg, Christopher Gillberg, 2008. Asperger Syndrome and Autism: A Comparative Longitudinal Follow-Up Study More than 5 Years after Original Diagnosis. Journal of Autism and Developmental Disorders 38: 72-85.

Sweden. Prospective follow-up study of seventy males with classic autism and seventy males with Asperger Syndrome (matched roughly for age) more than five years after their initial diagnosis. All AS subjects had Weschler IQ scores of at least 70, and all subjects were between 16 and 36 years old, though mean age was 21.5 for the AS group and 24.5 for the classic autism group. There weren't enough females who met criteria to include in the study. Seven AS men had ordinary jobs and six more had "daily occupational activities" in a group centre. One man in the classic autism group had a regular job, four more had "daily occupational activities", and thirty-three had individually tailored daily activities. Among the AS men, fourteen of the twenty-two who were at least 23 years old were living independently, as well as five younger men, though all depended on their parents' support. Three AS men were living in long term relationships and ten others had done so in the past. Among the classic autism men, three of the forty who were at least 23 years old were living independently, with parental help, one was in a long term relationship, and another had been recently.

Linda C. Eaves and Helena H. Ho, 2008. Young Adult Outcome of Autism Spectrum Disorders. Journal of Autism and Developmental Disorders 38: 739-747.

Canada. This study followed up on forty-eight young adults (thirty-seven male, eleven female) age 19 to 31 (mean age 24) diagnosed with an autistic spectrum disorder in early childhood. At the time of follow-up, two worked independently with one supporting himself, while twenty-five more had worked in sheltered, volunteer or part time work. Four lived more or less independently while twenty-seven lived with parents and the rest lived in supported arrangements. The interviews were completed by the parents of the autistic people, so these subjects probably had more social support than autistic people on average, since it's likely they all had supportive family arrangements. None of these subjects were considered to have a very poor outcome, unlike for other studies of outcome in adults.

Megan A. Farley, William M. McMahon, Eric Fombonne, William R. Jenson, Judith Miller, Michael Gardner, Heidi Block, Carmen B. Pingree, Edward R. Ritvo, Riva Arielle Ritvo, Hilary Coon, 2009. Twenty-year outcome for individuals with autism and average or near-average cognitive abilities. Autism Research. Published Online: 18 March 2009

This study is very recent and I hven't seen it, but the buzz in the blogs is that outcome is better than average, and that this is most likely due to the close social support generally found in Utah culture.

In general

In general, outcome is better when there is more social support available. Social support appears to be more important than intelligence when IQ is above 70. Outcome for those with IQs less than 50 is generally poor.

Summary

*Canadian data for year 2000, from CCSD's Disability Information Sheet No. 18, Canadian Council on Social Development, 2005. Calculated as 100% minus percentage of people age 15-64 who did not work at all in that year (chart 6, page 8). Retrieved April 10, 2009 from http://www.ccsd.ca/drip/research/drip18/drip18.pdf