Individuals and their parents frequently turn to pediatricians, adolescent medicine specialists, and psychologists to answer questions about the course and outcomes of their disorder. This article provides a description of the characteristics of autism spectrum disorders (ASD) in adolescence and early adulthood. It also describes essential elements of high school programs designed to increase positive outcomes for youth with ASD and provides detailed information about various employment support models. Finally, the implications of transition programming for medical specialists and psychologists are discussed.
Darius was diagnosed with autism when he was 6 years old. He displayed all of the classic characteristics of the disorder around the age of 3, but his physician was uncomfortable with the disorder and reluctant to “label” Darius at such a young age. Specifically, Darius spoke his first word at 2 years old. By 3, he was using one-word phrases. He did not like playing with others and did not play pretend ever. Instead, he stacked blocks while watching the same part of a children’s movie repeatedly. He was a difficult child as well. His parents struggled to get everyday community activities done because he screamed and cried whenever his daily routine changed. As a young child with a communication delay, he received 1 hour of speech therapy per week from an early-intervention provider. The early-intervention provider met with the family and child care providers, and taught them to withhold items he wanted until he named the item he wanted. By the time Darius entered school; he used two-word phrases to request items and repeated verbatim sections of dialogue from his favorite children’s movie.
Once he entered school, Darius’ school team prepared an Individualized Education Program (IEP) and served him as a child with autism. At that point, Darius’ physician also diagnosed him with autism. When meeting with the doctor, Darius’ parents had many questions for the medical professionals about his future. The parents wondered whether Darius would be able to get a job, live independently, have a girlfriend, and partake in all the other activities that most other individuals without disabilities experience; they asked their family physician about Darius’ future and asked what they should do to plan for his life. The physician did not have many answers for them. In fact, she was not even sure what to tell them about planning for Darius’ schooling. Instead, she suggested that they talk to the school psychologist in his special education program. After turning to the school psychologist and the other medical and psychological professionals, the parents still did not have many answers about how to plan for Darius’ future, so decided to take his educational and behavioral treatment year by year and leave their worries about his future for later.
Throughout his schooling, Darius did make progress. For example, he acquired more language, albeit with a loud, pedantic voice tone. He learned to read and complete simple mathematical problems to a third-grade level. Because of a new practice called inclusion, Darius also had the opportunity to attend some classes with his peers without disabilities. During these classes, he displayed somewhat more flexibility in respect of his daily routines. At home, he continued to spend his free time watching sections of the same movie repeatedly. As he entered high school, he continued to work on academic skills and activities designed for elementary school children. Because of the progress he made through his school career, as a 20-year-old young adult he did not display the classic signs of autism that were present at the age of 3; nevertheless, he continued to display many characteristics typical of adolescents and adults with autism spectrum disorders (ASD).
Darius desires to live a full and connected life in his adulthood. He represents the beginning of a wave of students with ASD who are entering adolescence. As the measured incidence of ASD has increased, most of the research available to describe evidence-based practices has focused on young children between the ages of 3 and 6 years. At the same time, many more individuals will enter adolescence and young adulthood in the coming years. It is essential to increase understanding of the essential elements of support necessary to assist Darius and his peers with ASD in successfully transitioning from school to adulthood. In other words, while Darius is still in school it is important to redesign his school program to prepare him for adult life. Thus, the purpose of this article is to: (a) describe the characteristics of autism in adolescence and young adulthood, (b) identify the needs of individuals with ASD as they transition from school services to adulthood, (c) describe the employment supports and models for adults with ASD, and (d) discuss implications of these supports for medical professionals.
The characteristics of ASD in adolescence and early adulthood
ASD is a behavioral disorder that includes deficits in communication and social interaction, and a series of behaviors described as “repetitive, restricted, and stereotyped patters of behaviors, activities, and interests.” Darius displays many of these characteristics, as described above. Specifically, he continues to display challenges related to communication and social interaction. He also continues to rely on routines to guide his behavior, even with some increased flexibility.
As individuals with ASD move into adolescence, the characteristics associated with ASD change somewhat. Specifically, individuals with ASD, like Darius, who have had the opportunity to interact with their peers without disabilities, demonstrate improved communication and social interaction. In addition, there may be a lessening of the impact of the restricted behaviors associated with the disorder. Thus, by adolescence many of the original symptoms that lead to initial concerns abate somewhat. Nevertheless, Seltzer and colleagues suggest that, while there is an abatement of symptoms, the developmental trajectory for individuals with ASD is splintered, with improvement in some behaviors that define autism. These investigators also note that some individuals with ASD experience periods of regression in the areas of behavioral challenges and insistence of sameness. Finally, they note that some individuals experience a worsening of symptoms. Thus, the developmental trajectory for individuals with ASD through adolescence is neither uniform nor linearly ascending. Seltzer and colleagues report findings indicating improvement in communication; however, continued impairment, particularly in social communication, persists into adulthood.
Gilchrist and colleagues found that by adolescence, individuals with Asperger syndrome show similar behavioral characteristics to individuals with high-functioning autism in adolescence. These investigators found that delays in language development for individuals with high-functioning autism were ameliorated by adolescence, leading to the finding that individuals with Asperger disorder were similar to individuals with high-functioning autism. This final point adds support to the proposed changes in the Diagnostic and Statistical Manual of Mental Disorders , Fifth Edition (DSM-V). In fact, proposed changes to DSM-V include the elimination of Asperger disorder as a separate diagnosis (Proposed Revision, APA DSM-5, unpublished data, 2011). Though controversial, it appears that this change will not result in significant changes related to diagnosis in adolescence. In addition, the American Psychological Association proposes a change from 4 symptom categories to 3. Table 1 shows the proposed changes to the diagnosis of ASD between the Diagnostic and Statistical Manual of Mental Disorders , Fourth Edition, Text Revised (DSM-IV-TR) and DSM-V.
| Characteristic | Current Characteristics in DSM-IV-TR | Proposed Changes in DSM-V | Description of Proposed Changes |
|---|---|---|---|
| Title of disorders | Pervasive Developmental Disorders | Autism Spectrum Disorder | Placing Autism in name of category and including the word “spectrum” in title |
| Disorders included in category | Autism, Pervasive Developmental Disorder Not Otherwise Specified, Asperger Disorder, Rett Disorder, Childhood Disintegrative Disorder | Autism Spectrum Disorder with notation of severity across symptoms, Level 1 “requiring support,” Level 2 “requiring substantial support,” Level 3 “requiring very substantial support” | Rett Disorder will be categorized as a medical disorder and therefore removed from the DSM altogether. All other disorders will be considered “autism spectrum disorder.” Levels of intensity of support noted across symptoms |
| Deficits in communication | Qualitative Impairment in Communication: Four different symptom descriptions, diagnosis required at least 1 of the 4 noted symptoms | This category is combined with deficits in social interaction to become “Persistent deficits in social communication” There are 3 symptom areas. Must meet criteria for all 3 of the descriptions | The notation of communication deficits becomes a part of the behaviors described under “Persistent deficits in social communication” |
| Deficits in social interaction | Qualitative Impairment in Social Interaction: Four different symptom descriptions, diagnosis required at least 2 of the 4 | This category is combined with deficits in communication to become “Persistent deficits in social communication” There are 3 symptom areas. Must meet criteria for all 3 of the descriptions | The notation of social interaction deficits becomes a part of the behaviors described under “Persistent deficits in social communication” |
| Excessive repetitive behaviors, routines, activities, and interests | Restricted, Repetitive, and Stereotyped Patterns of Behavior, Activities and Interests: Four different descriptions of behaviors, Diagnosis required 1 of the 4 descriptions | Restricted, Repetitive Patterns of Behavior, Interests and Activities: Four different descriptions of behaviors. List now includes “Hypo or Hyper reactivity to sensory input,” Must meet criteria for at least 2 of the 4 descriptions | The only major change in this category is the inclusion of different responses to sensory input |
| Age of onset | Onset prior to age 3 y | Onset in early childhood while noting that symptoms may not be fully manifested until demands exceed capacity | Slight loosening of the age of onset with the notation that symptoms may not be salient until social demands exceed individual’s ability to respond |
These changes in diagnostic requirement are likely to have little impact on adolescents, with a few exceptions. First, it is possible that some adolescents did not present the full characteristics of ASD under the old criteria, but will present as such under the new diagnostic criteria. Second, the loosening of the age of onset of symptoms is likely to assist diagnosticians in identifying individuals with symptoms after early childhood. Finally, the merging of deficits in social and communication abilities into one symptom category may decrease the emphasis placed on symptoms, such as nonverbal communication, that are both social and communicative in nature.
In addition to these primary diagnostic symptoms, there are secondary symptoms that can be as impactful and debilitating as the primary characteristics. Such indications include mental health diagnoses and behavioral challenges. In fact, there is evidence that adolescents with ASD are at greater risk of experiencing depression and anxiety disorders. Finally, the combination of primary and secondary characteristics affects individuals’ abilities to adapt and be successful at work, at home, and in relationships with others. Consequently, individuals with ASD have experienced lower rates of success in adulthood than those with other types of disabilities. Research indicates that adults with ASD are chronically unemployed and underemployed at relatively high rates. Nevertheless, individuals with ASD can achieve employment and independence in life when provided with a personal goal-focused curriculum and intensive structured instruction. The next section of describes the elements of quality transition programs for adolescents and young adults with ASD.
Transition needs for youth with ASD
Much of the early research on children with ASD has focused on the younger ages, with less attention to the transition issues and challenges they face. According to the US Department of Education there are 6,608,446 youths in special education, with 10% between 14 and 21 years of age. It is known that more than 90% are unemployed on exiting school and that relatively few go to college and complete a degree. In addition, it is known that as these children become adolescents they are among the most expensive to rehabilitate through the federal state vocational rehabilitation program, as well as having among the poorest outcomes. The vocational rehabilitation system in the United States has not considered young people with ASD as good candidates for employment.
Transition has been defined in the Individuals with Disabilities Education Act (IDEA) 2004 as follows.
Transition services mean a coordinated set of activities for a student with a disability that:
- A.
is designed to be within a results-oriented process, that is focused on improving the academic and functional achievement of the student with a disability to facilitate the student’s movement from school to postschool activities, including:
- •
postsecondary education,
- •
vocational education,
- •
integrated employment (including supported employment),
- •
continuing and adult education,
- •
adult services,
- •
independent living, or community participation;
- •
- B.
is based on the individual student’s needs, taking into account the student’s strengths, preferences and interests; and
- C.
includes instruction, related services, community experiences, the development of employment and other postschool adult living objectives, and, if appropriate, acquisition of daily living skills and functional vocational evaluation (IDEA; 2004 [34 CFR 300.43(a)] [20 U.S.C. 1401(34)].
IEPs for students aged 16 years and older must reflect specific transition planning. Some states (Virginia, Delaware, Rhode Island) have moved this to age 14. According to IDEA, the IEP must include a statement of
- •
appropriate measurable postsecondary goals based on age-appropriate transition assessments related to training, education, employment and where appropriate, independent living skills;
- •
the transition services (including courses of study) needed to assist the (student) in reaching those goals [34 CFR 300.320(b) and (c)] [20 U.S.C. 1414 (d)(1)(A)(i)(VIII)].
Transition needs for youth with ASD
Much of the early research on children with ASD has focused on the younger ages, with less attention to the transition issues and challenges they face. According to the US Department of Education there are 6,608,446 youths in special education, with 10% between 14 and 21 years of age. It is known that more than 90% are unemployed on exiting school and that relatively few go to college and complete a degree. In addition, it is known that as these children become adolescents they are among the most expensive to rehabilitate through the federal state vocational rehabilitation program, as well as having among the poorest outcomes. The vocational rehabilitation system in the United States has not considered young people with ASD as good candidates for employment.
Transition has been defined in the Individuals with Disabilities Education Act (IDEA) 2004 as follows.
Transition services mean a coordinated set of activities for a student with a disability that:
- A.
is designed to be within a results-oriented process, that is focused on improving the academic and functional achievement of the student with a disability to facilitate the student’s movement from school to postschool activities, including:
- •
postsecondary education,
- •
vocational education,
- •
integrated employment (including supported employment),
- •
continuing and adult education,
- •
adult services,
- •
independent living, or community participation;
- •
- B.
is based on the individual student’s needs, taking into account the student’s strengths, preferences and interests; and
- C.
includes instruction, related services, community experiences, the development of employment and other postschool adult living objectives, and, if appropriate, acquisition of daily living skills and functional vocational evaluation (IDEA; 2004 [34 CFR 300.43(a)] [20 U.S.C. 1401(34)].
IEPs for students aged 16 years and older must reflect specific transition planning. Some states (Virginia, Delaware, Rhode Island) have moved this to age 14. According to IDEA, the IEP must include a statement of
- •
appropriate measurable postsecondary goals based on age-appropriate transition assessments related to training, education, employment and where appropriate, independent living skills;
- •
the transition services (including courses of study) needed to assist the (student) in reaching those goals [34 CFR 300.320(b) and (c)] [20 U.S.C. 1414 (d)(1)(A)(i)(VIII)].
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