National Secondary Transition Technical Assistance Center Secondary and Postsecondary Outcomes of Individuals with Autism Spectrum Disorder Annotated Bibliography

Prepared for NSTTAC by Dr. Dawn Hendricks, Virginia Commonwealth University, April Mustian, UNC Charlotte; Kelly Kelley, UNC Charlotte

Transition planning and post-school outcomes for students with autism spectrum disorders (ASD) have received growing attention in the educational research. The transition from high school to adulthood typically includes completing school, gaining employment, participating in postsecondary education, contributing to a household, participating in the community, and/or experiencing satisfactory personal and social relationships (Wehman, 2006). Given the heterogeneity found in ASD, it becomes essential that professionals carefully plan for the transition to adulthood and provide a wide range of services and supports that are individualized and need driven.

For many adolescents with ASD the transition from school services to adulthood can be a particularly difficult time. While some individuals with ASD are successful, most are faced with significant obstacles in multiple areas as they attempt to negotiate their way into college, work, and the community. With the expanded interest in services for youth with ASD, there is a critical need to assess what we know currently about their transition to adulthood.

This annotated bibliography provides a summary of research related to the transition outcomes for youth with ASD. The summary includes both in-school and post-school outcomes for students with ASD in the areas of education, employment, social functioning, independent living, and multiple outcome areas.

Reference

Wehman, P. (2006). Life beyond the classroom: Transition strategies for young people with disabilities (4th ed.). Baltimore: Paul H. Brookes Publishing Co.

Bibliography

In-School Outcomes for Individuals with ASD

SECONDARY EDUCATION

Levine, P., Marder, C., & Wagner, M. (2004). Services and supports for secondary school students with disabilities. A Special Topic Report from the National Longitudinal Transition Study-2 (NLTS-2). Menlo Park, CA: SRI International. [Descriptive]

  • This report is part of the National Longitudinal Transition Study-2 (NLTS2), a 10-year study funded by the Office of Special Education Programs (OSEP) of the U.S. Department of Education
  • Data were gathered from parents to generate information regarding the services and supports students' received, including:
    • What related services and other supports are provided to secondary-school-age student with disabilities and to what degree are they provided by the schools
    • What is involved in parents acquiring services
    • What is the unmet need for services, according to parents
  • Results for those with autism, included:
    • Related services varied considerably among students
    • Parents reported investing considerable effort to obtain services
    • Parents reported numerous barriers to obtaining services
    • Parents reported that that many needed services are not available or are poor quality
    • Parents often relied on help outside of school
    • Parents reported dissatisfaction with services

Nuehring, M. L., & Sitlington, P. L. (2003). Transition as a vehicle: Moving from high school to an adult vocational service provider. Journal of Disability Policy Studies, 14, 23‑35. [Discussion]

  • Examined the transition of a high school senior with autism and a secondary diagnosis of severe mental retardation (age 21 years)
  • The steps the school and his educational team made to prepare him for the transition are included:
    • Using the individual Education Program (IEP) to drive the transition
    • Using an outcomes-based approach
    • Using assessments to determine the individual's preferences, strengths, and needs
    • Using such preferences, strengths, and needs to guide programming
    • Switching from an inclusion-based focus to a community-based focus
    • Providing functional academic instruction related to transition
    • Described the three other individuals and the vocational service programs provided
  • Strengths of each program included:
    • Each program was fulfilling a critical community need
    • Each program provides choices and a transition specialist
    • One service utilized assessments
  • Needs of each program included:
    • More education is needed for high school teachers and the staff of vocational service providers
    • Assessments should be utilized
    • Communication should be increased among the individual, his or her family, the school, and the service provider
    • Programming needs to be aligned between the school and the provider

Wagner, M., Marder, C., Blackorby, J., Cameto, R., Newman, L., & Levine, P., et al. (2003). The achievements of youth with disabilities during secondary school. A report from the National Longitudinal Transition Study-2 (NLTS-2). Menlo Park, CA: SRI International. [Descriptive]

  • This report is part of the National Longitudinal Transition Study-2 (NLTS2), a 10-year study funded by the Office of Special Education Programs (OSEP) of the U.S. Department of Education
  • Data were gathered from parents and school staff to generate information regarding the achievements of youth in secondary school, including:
    • School engagement (the extent to which a student identifies with the school environment as measured through feelings about school and participation in his education)
    • Grades
    • Expectations to keep up in class
    • Reading and mathematics performance
    • Management of self-care activities
    • Use of functional cognitive skills
    • Mobility (ability to get around outside of house)
    • Self-advocacy
    • Persistence
    • Participation in transition planning meetings
    • Progress toward independent living goals
    • Progress toward vocational goals
    • Progress toward self-advocacy goals
    • Household responsibilities
    • Driver's license
  • Results for those with autism, included:
    • School enjoyment is low
    • School engagement is low in comparison to other disability categories
    • Few are on grade level in math and reading
    • Many have low social skills and demonstrate poor behavior in the classroom
    • Students are less likely to belong to a group or see friends outside of school
    • Many have low functional skills and mobility

Wagner, M., Newman, L., Cameto, R., & Levine, P. (2006). The academic achievement and functional performance of youth with disabilities. A report from the National Longitudinal Transition Study-2 (NLTS-2). Menlo Park, CA: SRI International. [Descriptive]

  • This report is part of the National Longitudinal Transition Study-2 (NLTS2), a 10-year study funded by the Office of Special Education Programs (OSEP) of the U.S. Department of Education
  • Data were gathered from direct assessments to generate information regarding the academic performance of youth in secondary school, including:
    • How well do youth achieve in language arts, mathematics, science, and social studies
    • How does their achievement compare with the general population
    • What factors are statistically associated with higher academic achievement
  • Results for those with autism, included:
    • Scores were highest in the areas of mathematics calculation, synonyms/antonyms, and science knowledge and lowest in applied problem solving, social studies knowledge, and passage comprehension
    • Many performed more than six standard deviations below the mean on the measure of broad independence

SOCIAL FUNCTIONING/INCLUSION

Bauminger, N., & Kasari, C. (2000). Loneliness and friendship in high-functioning children with autism. Child development, 71, 447-456. [Descriptive]

  • Provided results form a study with 22 pre-adolescents/adolescents with high-functioning autism and 19 typically developing pre-adolescents/adolescents (age ranged from 7-14) who were asked to report on their understanding and feelings of loneliness and the quality of their friendships
  • Results included:
    • Those with autism were less likely to provide an accurate definition of loneliness that included both the affective and social-cognitive domains
    • Those with autism reported higher rates of loneliness
    • Most of those with autism reported having at least one friend, however, the quality of the friendship was poorer in terms of companionship, security, and help
    • Those with autism made fewer associations between loneliness and friendship

Bauminger, N., Shulman, C., & Agam, G. (2003). Peer interaction and loneliness in high‑functioning children with autism. Journal of Autism and Developmental Disorders, 33, 489-507. [Descriptive]

  • Provided results from a study to explore the frequency and quality of social interactions with peers and the understanding and feelings of loneliness
  • Included 18 pre-adolescents/adolescents with high-functioning autism and 17 typically developing pre-adolescents/adolescents (age ranged from 8-17) participated
  • Results included:
    • Those with autism reported higher degrees of loneliness, but also reported lower association between social interaction and loneliness
    • The typically developing group performed behaviors in the positive (eye contact, smile, sharing, social communication) and low-level social interaction twice as often as the autism group
    • The typically developing group initiated and responded to peer initiations at twice the rate as the autism group
    • The autism group interacted more with typically developing children than children with disabilities

Hellemans, H., Colson, K., Verbraeken, C., Vermeiren, R. & Deboutte, D. (2006). Sexual behavior in high-functioning male adolescents and young adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 37, 260-269. [Descriptive]

  • Provided results of a European study with caregivers of 24 institutionalized high-functioning adolescents and young adults with Autism Spectrum Disorder (aged 12-21), who were interviewed to determine the residents' interest in sexuality, socio-sexual skills, and the degree to which they engaged in sexual behavior
  • Results included:
    • All but one individual demonstrated interest in sexuality
    • The theoretical knowledge of self-care and socio-sexual skills was rated adequate, while the actual practice was inadequate for most
    • Most problems concerned a lack of hygiene, talking too frankly about sexuality, touching the genitals in public, and masturbation in the presence of others
    • Engagement is sexual behavior was high
    • Masturbation was the most common
    • A small number had engaged in sexual intercourse
    • Half had experienced a relationship
    • About one third of the group needed intervention regarding sexual development or behavior

Koning, C., & Magill-Evans, J. (2001). Social and language skills in adolescent boys with asperger syndrome. Autism, 5, 23-36. [Descriptive]

  • Provided results of a study with 21 adolescent males with Asperger Syndrome and 21 males matched on age and IQ (aged 12-15) who were assessed on social perception, social skills, number of close friends, contact with friends, and expressive and receptive language
  • Results included:
    • Those with AS showed differences in social perception and used fewer cues to infer emotional states
    • Those with AS were rated lower in the areas of self control and responsibility
    • Those with AS were rated as having fewer friends, less frequent social contact, and lower social competence
    • Differences emerged in the ratings provided by the individuals with AS, teachers, and parents

Marks, S. U., Schrader, C., Longaker, T., & Levine, M. (2000). Portraits of three adolescent students with asperger's syndrome: Personal stories and how they can inform practice. Journal of the Association of Persons with Severe Handicaps, 25, 3-17. [Qualitative]

  • Provided results from a study to provide an insider's view of Asperger's Syndrome in order to help professionals meet the needs of these individuals
  • Focus group discussions were conducted with three adolescents with Asperger's Syndrome (ages 13-15), their parents, and direct service providers
  • Findings included:
    • The impairments associated with AS were manifested differently across the individuals
    • Coping strategies employed to manage challenges differed between the individuals
    • All three individuals exhibited a narrow range of interests
    • School experiences reflected their isolation and loneliness and the significant challenges they face daily
    • All three expressed difficulties negotiating academic demands
    • Social interactions were limited for all three
    • Each dealt with the limitation in social opportunities in different ways

*Orsmond, G. I., Krauss, M. W., & Seltzer, M. M. (2004). Peer relationships and social and recreational activities among adolescents and adults with autism. Journal of Autism and Developmental Disorders, 34, 245-256. [Descriptive]

  • Provided results from a study was to investigate (a) types of peer relationships, (b) frequency of participation in social and recreational activities, and (c) the individual and environmental factors that are predictive of having peer relationships
  • The social lives of 185 adolescents (ages 10-21) and 50 adults (ages 22-47) with autism spectrum disorders who lived at home were investigated by interviews of mothers of adolescents/adults
  • Findings included:
    • Only a small percentage of the participants had at least one friend and almost half reported no peer relationships
    • About 21% had at least one peer relationship that involved some activities outside of a prearranged setting
    • About 24% had a peer relationship only in a prearranged setting
    • Having peer relationships was predicted by individual characteristics including younger age and less impairment in social interaction skills
    • Having peer relationships was not predicted by any environmental characteristics
    • Greater participation in social and recreational activities was predicted by individual characteristics including greater functional independence, less impairment in social interaction skills, higher levels of internalizing behaviors
    • Greater participation in social and recreational activities was predicted by environmental characteristics including greater maternal participation, greater number of services received, and inclusion in integrated settings while in school

Stokes, M. A., & Kaur, A. (2005). High-functioning autism and sexuality: A parental perspective. Autism: The International Journal of Research & Practice, 9, 266-289. [Descriptive]

  • Provided results of a study to determine if individuals with high-functioning autism would (a) display poorer social behaviors; (b) have poorer knowledge regarding privacy issues; (c) have less sex education; (d) display more inappropriate sexual behaviors; and (e) concerns would be greater for the parents of those with high-functioning autism
  • Survey parents of 23 adolescents/pre-adolescents with high-functioning autism and 50 typically developing adolescents/pre-adolescents (aged 10-15 years) with a sexual behavior scale to compare sexual behaviors and determine whether specialized education is required
  • Results included:
    • Displayed poorer social behaviors
    • Had less knowledge of privacy issues and engaged in inappropriate behavior in public more often
    • Had less sex education
    • Displayed more inappropriate sexual behaviors such as touching others, touching self, and disrobing
  • Parental concerns for those with high-functioning autism were higher than the control group
  • Recommended providing social skills training and sex education for this population

*Stokes, M., Newton, N., & Kaur, A. (2007). Stalking, and social and romantic functioning among adolescents and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 37, 1969-1986. [Descriptive]

  • The purpose of the study was to determine if those with high-functioning autism/Asperger's Syndrome would (a) differ in their sources of learning social and romantic knowledge and skills, (b) differ in level of romantic and social functioning, (c) engage in more unacceptable behaviors, and (d) persist in pursuit of a romantic interest for longer periods of time
  • Parents of 25 adolescents and adults with high-functioning autism or Asperger's Syndrome (aged 13-36 years) and 38 typically developing adolescents and adults (aged 13-30) were surveyed
  • Several results emerged as the group with high-functioning autism/Asperger's syndrome:
    • Relied less upon peers and friends for social and romantic learning
    • Had lower levels of social and romantic knowledge
    • Were more likely to engage in inappropriate courting behaviors
    • Were more likely to focus attention on celebrities, strangers, colleagues, and ex-partners
    • Pursued their target for longer periods of time

Recommendations were made for providing social skills training and sex education for this population through the use of peers

MULTIPLE IN-SCHOOL OUTCOME AREAS

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. [Descriptive]

  • Provided a follow-up study of 32 individuals with autism and 22 individuals with autistic-like characteristics (aged 16-18 years)
  • Compared multiple factors related to outcomes including:
    • Overall outcome
    • Social adjustment
    • Employment
    • Placement history
    • Educational history

Luce, S. C., & Dyer, K. (1995). Providing effective transitional programming to individuals with autism. Behavioral Disorders, 21, 36-52. [Discussion]

  • Discussed the implementation of transitional programming for individuals with severe and pervasive disabilities, including autism
  • Stated that transitional programming is designed to correspond with the ever increasing lifestyle expectations for individuals and to move them towards greater independence and less support
  • Provided a discussion on the importance of an organizational process for developing an effective transition program which includes: (a) ensuring organizational support; (b) establishing program objectives; (c) ensuring measurement, reliability, and validity; (d) providing feedback to program staff; and (e) developing action plans to improve transitional services
  • Recommended the establishment of essential transitional skills, teaching strategies that facilitate successful transition, and preparing the future environment for transition
  • Provided an example of a wide-scale conversion of an agency that resulted in a more progressive transition program

Post-School Outcomes for Individuals with ASD

POSTSECONDARY EDUCATION

Cameto, R., Levine, P., & Wagner, M. (2004). Transition planning for students with Disabilities. A Special Topic Report from the National Longitudinal Transition Study-2 (NLTS-2). Menlo Park, CA: SRI International. [Descriptive]

  • This report is part of the National Longitudinal Transition Study-2 (NLTS2), a 10-year study funded by the Office of Special Education Programs (OSEP) of the U.S. Department of Education
  • Data were gathered from parents and school staff to generate information needed to assess the achievements of youth with a variety of disabilities including autism in their secondary school years in multiple domains, including:
    • Age of initiation of transition planning
    • Student's transition goals
    • Participants in transition planning
    • Planned courses of study and instruction in transition planning
    • Identification of needed post-school services
    • Contact with agencies on behalf of the student
    • Post-school service information provided to the parents
    • Parent perceptions regarding the transition process
  • Results for those with autism included:
    • Most had a transition plan and had received instruction towards meeting goals
    • Those with autism were more likely to be working towards supported or sheltered employment than postsecondary education or competitive employment
    • Few students participate in transition planning
    • Team member participation in transition planning meetings varies considerably
    • Parents rated the usefulness of the transition planning process poorly
    • School staff rated the suitability of the educational program poorly

Taylor, M. J. (2005). Teaching students with autistic spectrum disorders in higher education. Education and Training, 47, 484-495. [Qualitative]

  • Provided a case study over a two year period of three students with Asperger's syndrome who attended a university in the United Kingdom
  • Evaluated the adjustments to service delivery required for students with an autism spectrum disorder in a higher education setting by determining (a) how students should be taught, (b) how students should be assessed, and (c) how students should be supported
  • Determined that several adjustments to educational practices for students with ASD are needed, including:
    • Careful selection of other students for any group work or the provision of appropriate alternative individual work
    • Reminding and prompting regarding teaching sessions to be attended
    • Reminding and prompting regarding assessments to be undertaken
  • Appropriate communication with the parents/guardians

Wagner, M., Newman, L., Cameto, R., Garza, N., & Levine, P. (2005). After high school: A
first look at the postschool experiences of youth with disabilities. A report from the National Longitudinal Transition Study-2 (NLTS-2). Menlo Park, CA: SRI International. [Descriptive]

  • This report is part of the National Longitudinal Transition Study-2 (NLTS2), a 10-year study funded by the Office of Special Education Programs (OSEP) of the U.S. Department of Education; this report focuses on young adults out of secondary school and ages 15-19
  • The NLTS2 involves a nationally representative sample of more than 11,000 youth who were ages 13-16 and receiving special education services under any of the twelve federal special education disability categories including autism
  • Results for those with autism, included:
  • Most finished high school with a regular diploma
  • Many were scored low in functional abilities
  • Engagement in out-of-school activities is low
  • Job training, employment, and postsecondary education are low
  • Parents of those with autism were less positive about future prospects that other disability categories

EMPLOYMENT

Burt, D. B., Fuller, S. P., & Lewis, K. R. (1991). Competitive employment of adults with autism. Journal of Autism and Developmental Disorders, 21, 237-242. [Descriptive]

  • Provided a case study of four adults with autistic disorder (aged 21-29) who were enrolled in a work-training program utilizing a behavioral social interaction approach and were subsequently competitively employed; all the participants were unemployed and unable to get jobs because of behaviors related to their autism
  • Participants participated in a 4-month individualized training program in order to address the following goals: (a) facilitate generalization of effective communication and socially acceptable skills, (b) decrease dependence on prompts, and (c) enhance the ability to internalize control over his/her behavior
  • Employment success was associated with the following factors:
    • Appropriate communication
    • Interpersonal skills
    • Gradual fading of supervision
    • Family support

García-Villamisar, D., Wehman, P., & Navarro, M. D. (2002). Changes in the quality of autistic people's life that work in supported and sheltered employment. A 5-year follow-up study. Journal of Vocational Rehabilitation, 17, 309-312. [Descriptive]

  • Provided a follow-up study conducted between 1996 and 2000 that compared two modalities of employment: sheltered workshop versus supported employment
  • The purpose was to determine the difference regarding quality of life for 26 individuals with autism employed in a sheltered workshop (mean age = 21.07) and twenty-one individuals with autism employed through a Supported Work Project (mean age = 21.64) in three sites in Europe
  • Results included:
    • In 1996, there was no difference between the sheltered work group and the supported work group on quality of life scores
    • In 2000, the sheltered work group had a lower quality of life score than the supported work group
    • The sheltered work group did not change its quality of life level between 1996-2000
    • The supported work group improved its global quality of life from 1996-2000

Howlin, P., Alcock, J., & Burkin, C. (2005). An 8 year follow-up of a specialist supported employment service for high-ability adults with autism or asperger syndrome. Autism: The International Journal of Research & Practice, 9, 533-549. [Descriptive]

  • Examined the United Kingdom National Autistic Society (NAS) supported employment program over an 8 year period (1995-2003) and explored how effective the service had been in finding work for and supporting individuals in employment
  • Evaluated (a) the changes in the numbers and types of jobs found since the inception of the program in 1995; (b) a comparison of the characteristics of current clients with those originally enrolled in the program; (c) the economic costs and benefits; and (d) assessments of satisfaction among the clients, employers, and employment specialists
  • Results included:
    • Over 68% of all clients found employment
    • Of the 192 jobs found, the majority were permanent contracts
    • Most of the jobs were technical, administrative, and professional in nature
    • Assessment of current clients found that IQ, language skills, and educational attainments were high
    • Employed individuals had a rise in salaries
    • Satisfaction with service delivery was high among the clients, employers, and employment specialists
  • Provided a cost-benefit analysis demonstrating a decrease in the cost per job found over time

Hurlbutt, K., & Chalmers, L. (2004). Employment and adults with asperger syndrome. Focus on Autism and Other Developmental Disabilities, 19, 215-222. [Qualitative]

  • Provided results from a study with six adults with Asperger's Syndrome (ages 25-56) who were interviewed about their experiences regarding employment
  • Several themes emerged:
    • All interviewed had difficulty finding work commensurate with their ability levels
    • Difficulty maintaining a job was the biggest problem for each participant
    • Several factors affect employability, including social skills, communication, sensory issues, and stress and anxiety
  • Recommended aiding success in the workplace by:
    • Providing an on-site job mentor
    • Describing job duties, responsibilities, expectations, and rules clearly and proactively
    • Determining whether to disclose the disability based on personal feelings
    • Educating employers and co-workers on autism
    • Taking into account he individual's strength's, interests, need for flexibility, as well as the job complexity when making a job match

Müller, E., Schuler, A., Burton, B. A., & Yates, G. B. (2003). Meeting the vocational support needs of individuals with asperser's syndrome and other autism spectrum disabilities. Journal of Vocational Rehabilitation, 18, 163-175. [Qualitative]

  • Provided results from a study with 18 adults with autism spectrum disorder with no diagnosis of mental retardation (13-Asperger's Syndrome, 2-high-functioning autism, 1-pervasive developmental disorder-not otherwise specified) who were interviewed about their experiences in the workplace
  • All participants were over 18 years of age and had been in the work force for at least one year
  • Participants were asked to (a) describe positive and negative aspects of their vocational experiences, (b) identify major obstacles to successful employment, and (c) recommend appropriate vocational supports to be provided
  • Themes regarding positive and negative aspects of their vocational experiences included:
    • Individuals have diverse vocational interests
    • Unemployment and underemployment are common
    • Majority of work experiences are negative
    • Most experience isolated instances of vocational success
  • Themes regarding major obstacles to successful employment included:
    • Mastering the job application process
    • Acclimating to new job routines
    • Communication
    • Navigating the social interactions with supervisors and co-workers
  • Recommended vocational supports include the provision of:
    • Job matching
    • Individualized ASD-specific job supports
    • Communication supports
    • Autism awareness training
    • Attitudinal supports

Schaller, J., & Yang, N. K. (2005). Competitive employment for people with autism: Correlates of successful closure in competitive and supported employment. Rehabilitation Counseling Bulletin, 49, 4-16. [Descriptive]

  • Examined quantitative employment outcomes for individuals with autism using the Rehabilitation Service Administration national database of 2001
  • Participants were 450 clients with autism who received services for competitive employment and 365 clients with autism who received supported employment
  • Investigated (a) differences in clients who received competitive versus supported employment services, and (b) customer demographic and case service variables related to successful closure for competitive and supported employment
  • Results included:
    • Clients who received supported employment versus competitive employment services were significantly different on successful closure rates, hours worked per week, earnings, and average cost of service provision
    • Client demographic variables related to successful competitive employment included age, years of education, and presence of a secondary disability
    • Case service variables related to successful competitive employment included job finding, job placement, and maintenance
    • Client demographic variables related to successful supported employment included race
    • The case service variable related to successful competitive employment included job placement

INDEPENDENT LIVING

Jennes-Coussens, M., Magill-Evans, J., & Koning, C. (2006). The quality of life of young men with asperger syndrome: A brief report. Autism, 10, 403-414. [Descriptive]

  • Described a study with 12 men with Asperger's Syndrome (mean age = 20.3 years) and 13 without Asperger's Syndrome (mean age = 20.5 years) who completed assessments and a semi-structured interview
  • Explored the quality of life of young men with and without Asperger's Syndrome; the differences in the perceived support network; and the described independence, friendships, dating relationships, and leisure activities
  • Results indicated the 12 men with Asperger's Syndrome reported a significantly lower physical quality of life than those in the control group, reporting less satisfaction with pain, discomfort, dependence on medical treatment, activities of daily living, work capacity, fatigue, mobility, sleep, and rest
  • Results indicated the 12 men with Asperger's Syndrome reported a significantly lower social quality of life than those in the control group, reporting a lack of necessary social skills

Krauss, M. W., Seltzer, M. M., & Jacobson, H. T. (2005). Adults with autism living at home or in non-family settings: Positive and negative aspects of residential status. Journal of Intellectual Disability Research, 49, 111-124. [Qualitative/Descriptive]

  • Provided results form a study of mothers from 133 families of adults (aged 22 years and older) with autism spectrum disorder regarding the positive and negative aspects of their child's residential arrangement
  • Explored (a) how mothers describe the positive and negative aspects of their child's current residential setting, (b) how much contact mothers have with their child living in an out-of-home setting, and (c) what changes for their own lives do mothers attribute to this residential arrangement
  • Results included:
    • A third of the children with autism currently lived with their mothers
    • Mothers co-residing with their child felt this arrangement provided the greatest possible benefit to the family
    • Mothers living apart from their child felt this arrangement provided the greatest possible benefit to the son or daughter with ASD
    • There were several negative aspects to co-residing including the child not being pushed towards independence, social isolation, and lack of services
    • There was a high level of contact and involvement between the mothers and the child in out-of-home placements
    • Mothers reported having more free time and less fatigue since the child moved out of the home

Persson, B. (2000). Brief report: A longitudinal study of quality of life and independence among adult men with autism. Journal of Autism and Developmental Disorders, 30, 61-66. [Descriptive]

  • The purpose of the study was to determine whether adults who have not previously been treated using the structured teaching method benefited with respect to independence, skill acquisition, and quality of life
  • Provided results from a study with seven men with a diagnosis of autism and mental retardation (mean age = 32.3) who participated in a longitudinal study (2.5 years) when they moved from an institution to a group home in Sweden
  • All seven men made progress across time and significant progress was made on the following variables on the Adult and Adolescent Psycho-Educational Profile (AAPEP):
    • Interpersonal behavior
    • Leisure skills
    • Work behavior
    • Vocational behavior
    • Independent functioning

Van Bourgondien, M., & Elgar, S. (1990). The relationship between existing residential services and the needs of adults with autism. Journal of the Association for Persons with Severe Handicaps, 16, 75-84. [Discussion]

  • Reviewed the characteristics of autism that affect adaptation to residential settings
  • Provided a number of considerations that should be taken into account when determining residential services
  • Described existing residential options in both Great Britain and North Carolina
  • Described how the needs of individuals with autism are currently not being met with existing residential services
  • Recommended developing residential programs specifically designed to meet the needs of individuals with autism

Van Bourgondien, M. E., Reichle, N. C., & Palmer, A. (1997). Sexual behavior in adults with autism. Journal of Autism and Developmental Disorders, 27, 113-125. [Descriptive]

  • Provided results from a study with 89 adults with autism (aged 16-59) from a community-based residential program (group home) who were surveyed to determine the degree to which they engaged in sexual behavior, and to investigate the sexual policies and training programs of group homes
  • Results included:
    • The majority engaged in some form of sexual behavior
    • Masturbation was the most common sexual behavior
    • Person-oriented sexual behaviors with obvious signs of arousal were also present in one-third of the participants (kissing, hugging, holding hands, sexual intercourse)
    • Training programs are limited
  • Recommended providing educational programming in the area of sexual behavior

MULTIPLE POST-SCHOOL OUTCOME AREAS

Billstedt, E., Gillberg, C., & Gillberg, C. (2005). Autism after adolescence: Population-based 13 to 22-year follow-up study of 120 individuals with autism diagnosed in childhood. Journal of Autism and Development Disorders, 35, 351-360. [Descriptive]

  • Provided a follow-up study of 120 individuals with autistic disorder and a comparison group of individuals with autistic-like characteristics in Sweden for 13-22 years until ages 17-40 years
  • Evaluated multiple factors and found:
    • Overall outcome- 57% had very poor outcomes
    • Independence-only four participants in the follow-up study were living independently
    • Presence of psychiatric disorders-eight individuals were diagnosed with psychiatric disorders
    • Use of medication- 32% of the individuals were prescribed neuroleptic medications
    • Presence of self-injurious behaviors- 50% of the individuals had engaged in moderate to severe degrees of self-injurious behaviors
    • Presence of hyperactive behaviors- 33% were perceived as hyperactive
    • Presence of violent behaviors- 19% reported extreme violent behaviors
    • Presence of epilepsy-43% had epileptic seizures at the time of the follow-up study
    • Presence of other medical disorders-23% had syndromal medical disorders (e.g., tuberous sclerosis)
    • Presence of catatonia- 12% had been clinically diagnosed with catatonia with severe motor initiation problems
    • Intellectual functioning-downward shift of IQ level between the diagnostic and follow-up studies
    • Characteristics during puberty-38% had remarkably problem-free adolescent periods, 31% had shown major problem during puberty
    • Male-female differences- no statistically significant differences between gender

Cederland, M., Hagberg, B., Billstedt, E., Gillberg, I.C., & Gillberg, C. (2008). Asperger syndrome and autism: A comparative longitudinal follow-up study more than five years after original diagnosis. Journal of Autism and Developmental Disorders, 38, 72-85. [Descriptive]

  • Provided a follow-up study of 70 males with Asperger's Syndrome and 70 males with autism more than 5 years after original diagnosis in Sweden
  • Evaluated differences in multiple factors including:
    • Overall outcome
    • Diagnostic stability over time
    • Intellectual functioning
    • Education
    • Occupation
  • Results indicated better overall outcomes for the Asperger's syndrome group than the autism study group possibly due to the higher full scale intelligence quotient (FSIQ) in the Asperger's syndrome group

Hendricks, D. R., & Wehman, P. (in press). Transition from school to adulthood for youth with autism: Review and recommendations. Focus on Autism and Other Developmental Disabilities. [Literature Review]

  • Provides a review of the literature regarding the postsecondary outcomes for individuals with autism spectrum disorders and provides insight into the condition of the transition process in the areas of education, employment, community living, and community integration
  • Includes a summary of current outcome literature as well as supports and interventions that have been evaluated within each domain

Howlin, P. (2000). Outcome in adult life for more able individuals with autism or asperger syndrome. Autism: The International Journal of Research & Practice, 4, 63-83. [Literature Review]

  • Reviewed the outcomes in adult life for more able individuals with autism spectrum disorders, including both high-functioning autism and Asperger's Syndrome focused predominantly on long-term follow-up research
  • Reviewed outcomes in terms of multiple factors including:
    • Cognitive functioning
    • Linguistic functioning
    • Academic functioning
    • Adaptive functioning
    • Educational history
    • Employment history
    • Independence
    • Social relationships
    • Behavioral concerns
    • Psychiatric disorders
    • Stability of IQ over time
  • Identified areas of concern in adulthood including:
    • Deterioration
    • Epilepsy
    • Mortality
    • Psychiatric illness
    • Forensic issues
  • Recommended improving outcomes in adulthood including appropriate educational programs, access to supported employment programs, specialized social groups, and improvements in diagnostic provisions
  • Results were extremely variable across the six studies with the proportion in work ranging from 5 to 44 percent; the proportion living independently from 16 to 50 percent; assessments of 'good' outcome from 16 to 44 percent; and rates of psychiatric disturbance from 11 to 67 percent

Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45, 212-229. [Descriptive]

  • Provided a follow-up study of 68 individuals with autistic disorder with a performance IQ of 50 or above in childhood in the United Kingdom; participants were followed until ages 21-48 years
  • Reviewed outcomes in terms of multiple factors including:
    • Diagnostic stability over time
    • Social functioning per assessment measures
    • Autistic-type behaviors in adulthood
    • Cognitive abilities
    • Linguistic abilities
    • Educational attainment
    • Employment
    • Friendships
    • Living arrangements
    • Overall social outcome
    • Autism-related problems
    • Epilepsy
  • Evaluated:
    • Associations among adult outcome measures including social, cognitive, and language functioning
    • Associations between childhood measures and adult outcomes including the relationship between performance IQ and speech and language, ritualistic behaviors, social functioning, and employment
    • Gender differences in outcome
  • Overall findings indicated: (a) 34% of the individuals in the study were employed, (b) 4% of the individuals lived by themselves while 38% of the individuals still lived at home, and (c) there were no statistically significant differences with gender

Howlin, P., Mawhood, L., & Rutter, M. (2000). Autism and receptive language disorder – A follow-up comparison in early adult life II: Social, behavioral, and psychiatric outcome. Journal of Child Psychology & Psychiatry & Allied Disciplines, 41, 561‑578. [Descriptive]

  • Provided a follow-up study of 19 males with autism (AS) and 20 males with developmental receptive language disorders in the United Kingdom with participants diagnosed between the ages of 7-8 years and followed until 21-28 years
  • Compared multiple factors related to outcomes including:
    • Cognitive functioning
    • Linguistic functioning
    • Social relationships, interactions, and competence
    • Employment
    • Independence
    • Living arrangements
    • Educational attainment
    • Psychiatric disorders
    • Stereotyped behavior patterns
  • Evaluated associations between childhood measures of early language ability and adult outcomes
  • Results indicated greater impairments for individuals with autism over other disorders due to impaired social communication skills, poor daily living skills, major problems establishing friendships, and fewer individuals being able to live or work independently

Hurlbutt, K., & Chalmers, L. (2002). Adults with autism speak out: Perceptions of their life experiences. Focus on Autism and Other Developmental Disabilities, 17, 103-111. [Qualitative]

  • Provided findings from three adults with high-functioning autism (ages 31, 35, and 61) who were interviewed over a 9-month period of time in order to investigate their life experiences
  • Emerging themes:
  • Adults with high-functioning autism identify with their own unique culture
  • Positive family involvement and support systems contribute to their feelings of self-worth and help them be successful
  • Adults with high-functioning autism have a strong opinion about what makes a difference in the lives of individuals with autism: group living arrangements and activities are dehumanizing, unemployment and underemployment are significant problems, they need support to develop skills, and behavior issues need to be addressed individually and positively

McClannahan, L. E., MacDuff, G. S., & Krantz, P. J. (2001). Behavior analysis and intervention for adults with autism. Behavior Modification, 26, 9-26. [Discussion]

  • Discussed an Adult Life-Skills Program at the Princeton Child Development Institute (PCDI) that provides services to adults with autism in the areas of employment, home, and community skills
  • Discussed the stringent program standards of the Adult Life-Skills Program
  • Discussed program parameters including instructional content, format, and context; staff responsibilities; curriculum; supported employment services; and program evaluation procedures
  • Discussed the success of 15 adults (ages 15-25) who have participated in the program
  • Recommended that programs for adults should have a comprehensive curriculum and rigorous evaluation criteria and that data on adult repertoires should inform the curriculum for young children

Mawhood, L., Howlin, P., & Rutter, M. (2000). Autism and developmental receptive language disorder-A comparative follow-up in early adult life. I: Cognitive and language outcomes. Journal of Child Psychology and Psychiatry, 41, 547-559. [Descriptive]

  • Provided follow-up study of 19 males with autism (AS) and 20 males with developmental receptive language disorders in the United Kingdom with participants who were diagnosed between the ages of 7-8 years and followed until 21-28 years
  • Compared multiple factors related to outcomes including:
    • Cognitive functioning
    • Linguistic functioning
    • Social relationships, interactions, and competence
    • Employment
    • Independence
    • Living arrangements
    • Educational attainment
    • Psychiatric disorders
    • Stereotyped behavior patterns
  • Evaluated associations between childhood measures of early language ability and adult outcomes
  • At follow-up, the Autism group showed more impairments in almost every area of language assessed (i.e., verbal and nonverbal intelligence, expressive language, conversational skills, reading, spelling), but the differences often fell short of significance.
  • With the passage of time both the Autism group and the language group moved closer in terms of language functioning.
  • In the Autism group, individuals who tended to have the best linguistic outcome in adulthood were functioning at a higher cognitive level more generally.

Moxon, L., & Gates, D. (2001). Children with autism: Supporting the transition to adulthood. Educational and Child Psychology, 18, 28-40. [Discussion]

  • Discussed the transition to adulthood for individuals with autism by combining a brief review of recent and relevant research with illustrations from casework and the personal observations of the authors
  • Stated that the transition to adulthood requires as much, if not more multidisciplinary support to span continuing education, training for employment, developing independence, developing social relationships, as well as addressing behavioral and mental health issues

Ruef, M. B., & Turnbull, A. P. (2002). The perspectives of individuals with cognitive disabilities and/or autism on their lives and their problem behavior. Research and Practice for Persons with Severe Disabilities, 27, 125-140. [Qualitative]

  • Provided results from a study with five adults with cognitive disabilities and four adults with autism with no diagnosis of cognitive impairment participated in face-to-face focus groups and individual interviews to evaluate perceptions regarding barriers and solutions they have experienced related to problem behavior
  • Explored (a) the conditions/barriers that have caused behavioral challenges, (b) suggestions on areas viewed as most helpful in increasing quality of life while reducing or eliminating problem behavior, and (c) types of useful informational products that would be most helpful in building positive, practical solutions to behavioral challenges
  • Themes emerged regarding conditions/barriers:
    • Communication difficulties
    • Environmental dislikes, including lack of personal freedom, privacy, and personal decision making
    • Programs that do not address individual needs
  • Suggestions were made regarding solutions:
    • Employment
    • Living situations
    • Recreation and leisure preferences
    • Relationships
    • Self-help
  • Suggestions made regarding informational products:
    • Informational formats should consist of oral presentation of information and hands on application including role playing
    • Informational sources vary according to the individual and are based on the living arrangements as well as support needs 
Rate this page: 

Add new comment

CAPTCHA
This is for testing whether you are a human visitor and to prevent spam submissions.