Fig. 10.1
Degree of expected community integration as a function of residential living model. Adapted from Gerhardt, P. F. (2009). The current state of services for adults with autism. Organization for Autism Research. Presented at the advancing futures for adults with autism: think tank. New York, NY
However, professionals working with adults on the spectrum need to adopt a life course perspective (Gitterman & Germain, 2008). Under the life course perspective, individuals move in and out of periods of autonomy and independence. The perspective holds that this is a universal event that is affected by a person’s age and health. The population of the United States has grown healthier and older when compared to previous centuries of Americans. The age at which older Americans need more supports and are less able to live independently has risen.
Likewise, it is generally accepted that the average age of death of individuals with disabilities has risen over this time period due to better living conditions and increased quality of care. Our understanding of the medical issues facing this population and the barriers to treatment have increased so that we are better able to provide preventative and primary medical care to this population. For example, our increased understanding of sensory integration dysfunction and the advent of desensitization clinics has allowed medical practitioners to provide preventative dental and gynecological care to lower functioning individuals on the autism spectrum. Consequently, the ASC population is living longer and is now facing some of the same issues of aging as the neurotypical population. Planning must be done to allow the individual who has reached his or her maximum level of independence and community integration to be allowed to return to a lower level of independence and community integration with more structure and support to help them with the issues of aging they might face. An individual who lived completely independently in the community with the informal support of friends, family, and a religious community many need formal supports such as visiting nurse services to provide care or homemaker services to help maintain their independence in the least restrictive environment. A person with an ASC who lived semi-independently in a supervised apartment setting may need to return to a group home setting as he or she ages.
The crisis points or triggering events should be anticipated by the professionals working with the person. These triggering points are often the decline of the person with an ASC’s own health or the decline or death of parents, siblings, or other people in his or her own informal support network. Given that individuals with ASCs often have difficulty with change and sudden transitions, professionals and family members should discuss this inevitability with the person on the spectrum ahead of time at a level that he or she can understand and that causes the least amount of distress. This discussion may need to be repeated a number of times of the course of the individual’s life.
What Are Effective Treatments for Young Adults with ASCs?
There are very few studies on effective treatments for young adults with ASCs. Much of the interventions with young adults are extrapolations of research findings with children. The National Research Council (2001) examined effective interventions or treatment for children with ASCs in the following variety of domains that define the disability. These domains were in the development of communication, social skills, cognitive skills, adaptive behavior, sensory and motor development, and the treatment of maladaptive behaviors. Treatment of young adults will need to continue addressing these domains as the focus of intervention. The report from the National Research Council (2001) highlighted the need for educators to use empirically validated techniques. Treatment for young adults with ASCs, whether it is educational or medical in nature, should be based upon techniques with scientific support.
The treatment of young adults with ASCs (as is also the case with children) is educational/behavioral or biological in nature. According to Froelich and Lotspeich (2011), the treatments for autism can be divided into these two broad categories: “(1) Educational and behavioral treatments, such as educational interventions, developmental and behavioral therapies, communication interventions, social skills interventions, sensory-motor interventions, psychological therapies, and physical therapies; and (2)biologic treatments, including prescription medication, over the counter medications, nutritional supplements, and diet changes” (p. 158). The authors admonish readers from utilizing treatment techniques that have no scientific support. In their review of effective treatments, Froelich and Lotspeich (2011) cite the National Autism Center’s, 2009 National Standards Report. This report identified 11 established treatments, i.e., 11 treatments that were supported by research to be effective in treating aspects of ASCs. Incidentally, all 11 established treatments were based upon behavioral psychology (e.g., Applied Behavioral Analysis).
The National Standards Report went on to identify 22 “emerging” treatments: “treatments that have some evidence of effectiveness, but not enough for us to be confident that they are truly effective” (National Autism Center, 2009). Among the promising treatment techniques were: Augmentative and Alternative Communication Devices, Cognitive Behavioral Intervention Packages, Developmental Relationship-based Treatments, Exercise, Picture Exchange Communication Systems, Scripting, Social Skills Package, Structured Teaching, Technology-based Treatments, and Theory of Mind Training. More evaluative research will need to be conducted before some of the 22 emerging treatments will be placed among the list of established treatments.
Five treatments were deemed to be “Unestablished” treatments: “treatments for which there is no sound evidence of effectiveness. There is no way to rule out the possibility these treatments are ineffective or harmful” (National Autism Center, 2009). Three treatments, Academic Interventions, Auditory Integration Training, and Facilitated Communication, were identified as falling into the “unestablished” level of evidence category (p. 22). Gluten- and Casein-Free Diet interventions initially showed some promising results. However, the report cited better controlled studies indicating no educational or behavioral benefits and referred readers to studies that had mentioned “medically harmful effects” (p. 23). Sensory Integrative Packages were the final treatment techniques listed as unestablished. However, the report went on to indicate that there were probably many more treatment techniques (e.g., hyperbaric oxygen) that belonged in the “unestablished” category, but the methodology used by the creators of the report only reviewed treatment techniques that were published as research studies in peer-reviewed journals. Treatment providers should view any techniques published in non-peer-reviewed publications as “unestablished”.
Conclusions and Future Directions
A significant limitation in detailing the state of services for a population such as adolescents and adults with a diagnosis of autism is that you are trying to take a static picture of a moving target. The modern history of services for all individuals with a developmental disability has been more than a century of parents, siblings, and self-advocates demanding, and fighting for, an increasing degree of quality and community integration in all aspects of life for the person with the disability. This has continued, and if anything expanded, with the families of individuals with a diagnosis of an autism spectrum disorder. As stated above, the current state of residential services for individuals with a developmental disability ranges along a continuum of both the degree of community integration as well as the degree of paid professional support. This continuum ranges from a person living completely independently in the community, to a person living independently but with a combination of paid and unpaid (family and friends) support, to a person living in the community but in a staffed facility, and finally to a person living in a larger congregate care facility.
Related posts:
Transition from High School to Adulthood for Adolescents and Young Adults with Autism Spectrum Disorders
Employment and Related Services for Adults with Autism Spectrum Disorders
Autism Spectrum Disorder in Adolescents and Adults: An Introduction
Adaptive Behavior, Life Skills, and Leisure Skills Training for Adolescents and Adults with Autism Spectrum Disorders
Assessment and Treatment Planning in Adults with Autism Spectrum Disorders
A Systematic Review of Psychosocial Interventions for Adults with Autism Spectrum Disorders
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