Adolescents and Adults with Autism

Notes from a class I took from Johns Hopkins:

Autism is “almost always a lifelong disabling condition. However, a small number of individuals diagnosed with autism as children would not meet diagnostic criteria for autism in later years. Although in many cases there are some residual characteristics of social, communication, and/or behavioral idiosyncrasies." (Volkmar, 2005, p 288)

At “adolescence some individuals with autism improve markedly, other experience deterioration in functioning and many continue a stable maturational course.” (Volkmar, 2005, p 288)

Follow up studies indicate that general improvement in symptoms may occur in early to mid-teen years for those who became aware of their “peculiarities” and made a “conscious effort to do something about them”. (Volkmar, 2005, p 288)

Studies indicate that between 12-22% of adolescents (Nordin & Gillber, 1998), 44% of adolscents and 49% of adults have increased rates of behavioral difficulties (Ballaban-Gil et al., 1996). Gilchrist et al., (2001) reported many of their population of 20 adolescents experienced more problems in adolescence than in early childhood.


Ongoing Behavioral Difficulties

• Even with no deterioration, parents report significant behaviors of concern including “resistance to change, compulsions, unacceptable sexual behavior, tantrums, aggression and/or self-injurious behavior.
• Even if the behavioral frequency decreases, physical maturation can be “more distressing or even dangerous than the same behaviors in childhood.” (Volkmar, 2005, p 290)
• Feelings of burnout by many parents of adolescents and young adults with autism.
• Ballaban-Gil et al. (1996) found that 69% of the 99 adolescents sampled were experiencing behavior difficulties or were on psychotropic medications.


Academic Achievement and Higher Education

• Generally, academic skills show increases over the years, however, “functional deficits relative to intelligence” continue (Volkmar, et al., 2005, p 295).
• A small percentage have obtained advanced degrees.


Psychiatric and Emotional Problems

• 40% of adolescents and young adults experienced psychiatric episodes, most often mood disorders. Of mood disorders, depression was most common, depression that may have a genetic component. Anxiety disorders, including obsessive-compulsive disorders, are also frequently reported.
• There is no increased risk for schizophrenia for adolescents and adults, but schizophrenia has been reported in persons with ASDs.


Mortality

• “the vast majority of people with autism live at least though middle age and almost certainly beyond,” (Volkmar, et al., 2005, p 297), which has implications for parents and family.
• Mortality was somewhat elevated for persons with ASDs.
• The major causes of mortality included disease, seizures, accidents, and (less so) suicide.


Living Arrangements

• “independent living or living with peers is rare.”
• If mental retardation accompanies autism, living independently or with peers is unlikely, “. . . for the most part, adults with both autism and mental retardation either remain at home with their families or live in group care settings arranged by other.” (Volkmar, et al., 2005, p 297)
• For adults with autism and average intelligence, only a small percentage live independently, with studies estimating a range between 8% and 17% (See Volkmar et al., 2005 for references.)


Employment

• Only a minority maintain full-time, independent employment (Howlin& Goode, 1998 in Volkmar et al., 2005).
• For successful employment, supported employment that addresses communication, problem solving, life skills, stress management and money management, among other skills, is important.


Marriage

• There are some reports of persons with ASDs being married, however, “The majority of adults with autism, however, are generally reported to have either limited social contacts, relatively superficial relationships, or social interactions mainly in the context of community groups and organizations” (Volkmar et al., 2005, p 299. See text for further references.).


Autism and the Criminal Justice System

As Victims: In general, people with developmental disabilities are more likely to be victims of crime, or criminal, sexual, or financial exploitation. A greater difficulty in interacting with law enforcement because of difficulties with communication, behaviors, or social misperceptions. Persons with higher-functioning may be susceptible to victimization because of their greater integration into the community with inadequate or inappropriate supports.

As Persons Committing the Crime:
For persons with high-functioning autism or Asperger’s disorder, it is important to note that:
• “run-ins with the legal system were likely to be related to perseverative interests of unusual thinking patterns. . . not malicious or unscrupulous motives.” (Volkmar et al., 2005 p 299. See text for further references.)
• Other characteristics of high-functioning autism of Asperger’s that are related to “crimes” included restricted interests, heightened sensory sensitivity, extreme distress when routines were interrupted, limited understanding of social norms, and naivete.
• Offenses by persons with autism and mental retardation were “less likely to involve drugs or alcohol, . . . to involve concrete gain, and were likely to be committed during daylight hours, consistent with relative social naivete associated with autism.” (Volkmar et al., 2005 p 300. See text for further references.)


Clinical Needs of Adolescents and Adults with Autism With Average Intelligence

Ever increasing academic and social demands are challenging to persons with autism and average intelligence.


School

• In school, given that many students with autism and no mental retardation are included, organizational demands and social expectations increase steadily, even “overwhelming”. Other problems include experiences of being bullied, teased, and ostracized can be quite difficult.


Relationships with Peers

• Ever increasing rules of social behaviors, including “fuzzy” rules, present problems. As repeated efforts at reaching out are not fruitful, adolescents and adults with autism without mental retardation or Asperger’s disorder may retreat into their rooms, to nonsocial or minimally social environments.
• To address these problems, explicit instruction of social and emotional topics is important. Organizational skills should be explicitly taught. Accommodations should be considered as needed. Time for relaxation and decompression should be scheduled regularly. Encouragement should be offered and emotional support given. Protection against bullying and other forms of victimizing should be given. As indicated, medication for anxiety or depression should be considered.


College

Organizational issues are of greater concern than content of courses for persons with high-functioning autism or Asperger’s disorder. Training in daily life skills, having a single room, training in organizational skills, social skills, problem solving skills as related to stressors, keeping class and workloads manageable, having interest related social activities, and time for exercise as a stress reliever are all important strategies.


Work

Organizational and social aspects of jobs are a challenge. Without supports, success can be limited. Recommended are direct instruction in social skills, counseling and written intervention plans, teaching how to get help or guidance on a daily basis, and informing and sensitizing employers and providing a contact person at the agency providing vocational supports.


Sexuality

Problems with sexuality center less around physical ability than the social and emotional skills needed to engage another person. Howlin (1997) notes the following:
• An intense determination to date and marry so one can be like others
• Obsessions and infatuations that are not reciprocated
• Vulnerability to sexual exploitation
• Difficulty with behaviors that can be misunderstood
• Social-communication and sensory issues that make sexual expression less than what the partner expects

“Very clear, explicit communication about socially desirable, effective behaviors and perspectives of others may be needed to help more capable adults with autism find ways to meet their needs for social, physical, and sexual contact with others, while remaining safe from exploitation and abuse.” (Volkmar et al., 2005, p 304)