Supporting Quality of Life Among Adults With Autism

Working with adults with autism offers both rewards and challenges. Empowering adults with autism to have a high quality of life involves supporting them in doing activities of their choice, spending time with people of their choice, and doing work that they enjoy. No matter the level of supports they require, everyone deserves to be able to pursue the goals that bring them joy. Let’s review how you, as a behavioral health professional, can help your clients achieve these goals.

What does quality of life mean and how does it relate to autism?

Quality of life refers to an individual’s perception of how good their life is across several factors. The parts of an individual’s life that affect quality of life include:

• Health
• Relationships
• Fulfillment from school and/or employment
• Ability to participate in society in the ways they want to

When adults with autism feel that these quality of life factors are not being met, it can cause stress, which can exacerbate other factors that negatively affect the lives of those with autism.

Factors that negatively impact quality of life for adults with autism

For adults living with autism, quality of life can be difficult to achieve and maintain for several reasons. These factors will most likely vary in their severity and impact depending on where in the autism spectrum an individual is. In this section, we’ll review the challenges to quality of life so that those who care for adults with autism (whether you’re a friend, family member, or support professional), can better understand the challenges of those they support.

Interpersonal factors

Difficulties with interpersonal and social factors are one of the more common quality of life challenges faced by adults with autism. Research has shown that these difficulties can be tied to negative health outcomes associated with autism, such as heightened levels of stress, poor quality of sleep, difficulty with sensory processing, and more.

Whether it’s due to these factors or others, when individuals have a hard time connecting with their peers or living socially, several consequences can creep into their daily lives. Issues such as social withdrawal and increased isolation are commonly tied to poor quality of life.

Compensatory strategies

Compensatory strategies among individuals with autism refers to a coping mechanism in which a person consciously behaves differently in order to “hide” their autism. While everyone does this from time to time, adults with autism are more likely to employ compensatory strategies due to widely held social stigmas about what is means to have autism.

While research into compensatory strategies is ongoing, current studies suggest that individuals with autims use a wide range of strategies, with the chosen compensation differing from individual to individual.

There is no hard data on how many people try to modify their behavior to appear neurotypical, but researchers have connected this behavior to poorer quality of life for people with autism because it’s tiring and leads to mental and physical exhaustion.

Autistic burnout

One of the more severe issues that can stem from compensatory strategies or other difficulties faced by adults with autism is autistic burnout.

Autistic burnout is when an individual displays the symptoms of severe burnout that results from high levels of stress and an unequal relationship between societal expectations and the individual’s abilities. A lack of positive supports has also been shown to be a contributing factor.

Autistic burnout negatively affects the quality of life for adults with autism by causing three main health issues:

• Chronic fatigue and/or exhaustion
• Loss of various skills due to this exhaustion
• A lower tolerance to stimuli

How to help improve quality of life for adults with autism

Now that we better understand the factors that can act as barriers to a high quality of life for adults with autism, let’s explore what you as a support provider can do to help.

Chosen activities

For the most part, adults get to choose whether we want to go bowling, swimming, or golfing during our free time. Many adults with autism who require services to access activities in their communities, however, don’t get to make that choice.

Perhaps nothing is more important to the quality of life for adults with autism and IDD than having well-trained, experienced DSPs — and enough of them to give each individual the opportunity to make their own choices regarding how they spend their time.

All over the country, organizations that provide services to people with intellectual and developmental disabilities (IDD), including autism, face the daily challenge of providing individualized, person-centered services despite a shortage of funds and direct support professionals. Because hiring and retaining DSPs is difficult — and getting more difficult in the tight labor market — many service providers simply can’t find the staff they need to give everyone they serve the opportunity to do what they want to do, when they want to do it.

Community inclusion

Community inclusion is fundamental to improving socialization for individuals with IDD, cultivating environments that nurture their overall well-being, and fostering a sense of belonging and significance.

It’s essential, therefore, to recognize the significance of community inclusion practices in improving the quality of life of adults with autism. By affording individuals the opportunity to live lives akin to their peers, community inclusion enables them to cultivate presence, engagement, and heightened well-being within their communities.

Initiating efforts toward community inclusion can be facilitated by adhering to several guiding principles:

1. Choice: Involve the individuals you serve in every phase of the process, empowering them to exercise self-determination based on their personal preferences.
2. Responsibility: Support individuals in their endeavors to explore new experiences and persevere through challenges or setbacks.
3. Cultural compatibility: Acknowledge that each individual possesses unique cultural perspectives, values, and roles. Respect and incorporate these cultural norms into your community inclusion efforts.
4. Natural supports: Recognize and cultivate various forms of support within an individual’s life, including familial, professional, and social relationships. While maintaining such connections may pose challenges for some adults with autism, it is crucial to assist them in identifying and nurturing these natural supports.

Incorporating these principles into community inclusion programs fosters both a sense of autonomy and connection to the community for the individuals being served. By prioritizing these initiatives, we can enhance the quality of care and life for individuals with autism and other intellectual and developmental disabilities.

Employment and ABA services for adults

Nearly half of 25-year olds with autism have never held a paying job. There are efforts all over the country to develop employment opportunities for adults with autism and other forms of IDD – from hydroponic farms to coffee shops to digital arts and animation. Some individuals enjoy working in sheltered workshops, while others long to find a job in their communities but cannot due to lack of support.

In addition to the shortage of DSPs and job coaches, adults with autism who still need to develop important skills before trying to enter the workforce face another obstacle. Many cannot access one form of therapy that excels in teaching such skills — applied behavior analysis (ABA).

Task analysis and ABA can be used to teach a wide variety of daily living and job skills. By working to help this population increase skills for both life and employment, you can help contribute to a higher quality of life for adults with autism.