Fostering Independence and Improving Quality of Life for Adults with ASD
Autism awareness has dramatically increased over the past few decades. This rise in autism awareness and subsequently, research, has increased the availability of evidence-based treatment for children with autism spectrum disorders (ASD). However, treatment is limited for adults with ASD (Gerhardt & Lainer, 2011; Milley & Machalicek, 2012). The lack of services for adults contributes to some of the challenges they face such as unemployment, reliance on caregivers, and limited social relationships (Howlin, Goode, Hutton, & Rutter, 2004). These challenges can significantly reduce the quality of life adults with ASD experience.
What is Independence, and Why Does It Matter?
The acquisition of skills that allow adults with ASD to live high-quality lives as independently as possible is critical. Quality of life encompasses many different domains including physical well-being, social inclusion, and self-determination (e.g., Schalock, 2004). As an adult (with or without ASD), achieving the highest quality of life requires a wide range of skills that need to be performed independently (i.e., without assistance from caregivers). Some of these skills may include:
-Leisure activities such as drawing or completing a puzzle
-Vocational skills such as shredding or sorting
Characteristics of autism (e.g., social-communication skills deficits, challenging behavior, etc.) can greatly interfere with the acquisition of new skills (Hume, Boyd, Hamm, & Kucharczyk, 2014; Hume, Loftin, & Lantz, 2009). Thus, it is important that caregivers help adults with ASD become as independent as possible.
When to Foster Independence
Like the concept of quality of life, independence can be defined broadly. However, the ultimate goal is for the individual to perform certain skills without prompts from caregivers (e.g., Hume et al., 2014). Ideally, fostering independence should begin early (McClannahan, MacDuff, & Krantz, 2002), but it is never too late to start! When developing long-term goals for adults with ASD, careful consideration should be given to how those goals will improve quality of life (Hume et al., 2014). Certain, potentially difficult, questions should be addressed during the goal-setting process. For example:
-Where will the individual live? At home, in a group home, or in a residential setting?
-Will the individual attend an adult day program, a sheltered workshop, or be placed in a supported employment position?
-How much support does the individual need? Will there be a caregiver available to assist 24/7?
-What specific skills does the individual need to be successful at home, at work, or in the community?
-Which leisure and vocational activities (e.g., taking walks, going to the movies, shredding, cleaning, etc.) does the individual enjoy?
Once goals are developed, then, evidence-based treatments can be selected to assist the individual in meeting his or her goals.
How to Foster Independence
Developing long-term goals and selecting the appropriate treatment can be overwhelming. However, caregivers can start right away by doing a few simple things:
1. Create a list of skills the individual needs to function independently in today's society. These might be things like grocery shopping, tooth brushing or riding the bus. An exhaustive list does not need to be created immediately because additional skills may be added over time.
2. Divide that list of skills into those the individual can complete and those that still require assistance. This will provide a clear picture of the individual's current skill level.
3. Gradually fade assistance (e.g., reduce the number of prompts) and physical presence (i.e., take a few steps back) for the skills the individual can complete. Continue fading until the skills can be completed without any caregiver prompting or a caregiver being in close proximity (e.g., within 3 ft).
4. Continue practicing the skills that still require assistance.
There are numerous evidence-based approaches to teach adults with ASD the necessary skills to live more independently. Many of these approaches are rooted in the science of applied behavior analysis (ABA). Examples include the use of activity schedules, video modeling, visual supports, task analyses, self-monitoring, differential reinforcement, and shaping (e.g., Gerhardt & Lainer, 2011; Hume et al., 2014; Hume et al., 2009). Use of one or some combination of these behavioral strategies can help adults with ASD overcome the challenges they face in adulthood and lead more meaningful lives.
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