Autism Aging Out and What Comes Next

Navigating autism aging out and what comes next: Challenges, support, and care for older adults with autism.

Understanding Aging with Autism

As individuals with autism grow older, it is important to understand the unique challenges they may face and the prevalence of autism in older adults.

Prevalence of Autism in Older Adults

According to the Centers for Disease Control (CDC), approximately one in 44 children receive an autism diagnosis, and these individuals go on to become autistic adults [1]. However, it is important to note that many older adults who were not diagnosed as children are now receiving or seeking a diagnosis. This may be due to increased awareness, better access to diagnostic tools, or a realization of their own differences later in life [1].

Challenges Faced by Older Adults with Autism

Older adults with autism face unique challenges that can impact their overall well-being. While there is a lack of research specifically focused on the needs and challenges faced by older autistic adults, some insights can be gleaned from existing studies.

Physical health concerns are more prevalent in older autistic adults compared to those without autism. Gastrointestinal disorders, in particular, are more commonly reported in this population. However, older autistic adults are less likely to have coexisting mental health conditions, aggressive behaviors, or diabetes compared to individuals diagnosed as children or young adults.

Aging can bring about cognitive changes that may impact individuals with autism, but there is limited research on this topic. More studies are needed to better understand the cognitive changes, care needs, and outcomes of autistic adults beyond the age of 50. Additionally, the risk of dementia, including Alzheimer's disease, increases with older age, but little is known about the risk of dementia in older autistic adults [2].

Understanding the unique challenges faced by older adults with autism is essential for providing appropriate support and care. Further research and increased awareness are needed to ensure that the specific needs of this population are addressed effectively.

Health and Wellness in Older Autistic Adults

As individuals with autism age, they may face specific health and wellness concerns that require attention and support. In this section, we will discuss the physical health concerns and mental health conditions that are often observed in older autistic adults.

Physical Health Concerns

Older autistic adults are more likely than adults without autism to have certain physical illnesses, particularly gastrointestinal disorders. Gastrointestinal issues, such as irritable bowel syndrome (IBS) and constipation, are commonly reported in this population. These conditions may be related to autism-related hypersensitivities and challenges with diet and digestion.

It is important for healthcare providers to address and manage these physical health concerns in older autistic adults, ensuring their overall well-being and quality of life.

Mental Health Conditions

While older autistic adults are more likely to have physical health concerns, they are less likely than adults diagnosed as children or young adults to have coexisting mental health conditions and aggressive behaviors [1]. However, it is crucial to note that mental health conditions can still affect older autistic adults.

Figures courtesy of Autism Speaks

Attention-deficit/hyperactivity disorder (ADHD) is more prevalent in individuals with autism compared to the general population. It affects an estimated 30-60% of people with autism [3]. Anxiety disorders and depression are also commonly observed in autistic individuals, with higher rates compared to the general population [3]. These mental health conditions can significantly impact the overall well-being and daily functioning of older autistic adults.

It is crucial for healthcare providers to be aware of and address the mental health needs of older autistic adults. Early identification, appropriate interventions, and support systems can help manage these conditions and enhance the overall quality of life for individuals on the autism spectrum.

Understanding and addressing the unique physical health concerns and mental health conditions that may arise in older autistic adults is essential for ensuring their well-being and providing appropriate care and support. By adopting a holistic approach to health and wellness, we can strive to enhance the overall quality of life for older individuals on the autism spectrum.

Services and Support for Older Adults with Autism

As individuals with autism age, it becomes increasingly important to provide appropriate services and support tailored to their unique needs. The following sections explore two key aspects: psychotherapy for adult autism diagnosis and research on services for autistic adults.

Psychotherapy for Adult Autism Diagnosis

When adults receive an autism diagnosis, psychotherapy, also known as talk therapy, can play a crucial role in their journey. It can help them navigate and manage the shift in how they perceive themselves in relation to their world. Psychotherapy provides a safe and supportive environment where individuals can explore their thoughts, emotions, and experiences related to their autism diagnosis. It can assist in developing coping strategies and enhancing overall well-being.

Research on Services for Autistic Adults

While there is a growing recognition of the importance of services for autistic adults, the evidence base in this area remains limited and variable in aims and methods. Most existing studies primarily focus on employment-related services, with few examining the broader ecosystem of services available to autistic adults. To effectively support autistic adults throughout their lives, it is crucial to expand research efforts to encompass a broader range of services, interventions, and supports.

Notably, there is a disparity in funding priorities for autism research, particularly in the United Kingdom. The majority of funding is directed towards projects in the areas of biology, brain, and cognition, with comparatively little invested in identifying effective services, interventions, and supports for autistic individuals and their families [5]. However, research priorities should align with the needs and priorities articulated by autistic adults, family members, practitioners, and researchers.

The autism community emphasizes the importance of research that has a direct practical impact on their day-to-day lives. This includes studying effective services and supports, improving life skills, understanding how autistic individuals think and learn, and addressing the societal inclusion of autistic people. To ensure that research resources are directed towards areas of greatest need, it is crucial to involve the autism community in setting research priorities and decision-making processes.

Overall, the research on services for autistic adults is still evolving, and there is a need for greater focus on identifying effective interventions, supports, and services that can enhance the quality of life for autistic individuals as they age. By prioritizing research in areas that directly impact day-to-day living and involving the autism community in research processes, we can better meet the diverse needs of older adults with autism.

Aging, Cognitive Changes, and Care Needs

As individuals with autism age, they may experience various cognitive changes and have specific care needs. Understanding these aspects is crucial for providing appropriate support and ensuring a good quality of life. In this section, we will explore the risk of dementia in older autistic adults and cognitive changes beyond age 50.

Risk of Dementia in Older Autistic Adults

The risk of developing dementia, including Alzheimer's disease, increases with older age, but little is known about the risk of dementia in older autistic adults. It is estimated that 2% of adults aged 65-69 years have dementia, and this prevalence increases to 25-33% among those aged 85 years or older.

Research suggests that the prevalence rates of dementia in autistic adults range from 1.9% to 3.2% [2]. However, more studies are needed to better understand the impact and prevalence of dementia in this specific population. The risk of dementia in older autistic adults remains a topic of ongoing investigation.

Cognitive Changes Beyond Age 50

Beyond the age of 50, very little is known about the cognitive changes, care needs, and outcomes of autistic adults [2]. Research on aging and autism has largely neglected the life outcomes and trajectories for older adults diagnosed with Autism Spectrum Disorder (ASD). There is a pressing need for a better understanding of the experiences of autistic individuals as they grow older.

Considering the cognitive changes that may occur in older autistic adults is vital for providing appropriate care. It is important to acknowledge that each individual with autism is unique and may experience cognitive changes differently. Further research is necessary to gain a comprehensive understanding of the cognitive changes that occur beyond age 50 in autistic adults.

As the understanding of aging in individuals with autism continues to evolve, it is crucial to prioritize research and support services tailored to the unique needs of older autistic adults. By conducting more studies and increasing awareness, we can better address the cognitive changes and care needs of this population, ensuring they receive the appropriate support and resources to navigate the aging process.

Associated Conditions in Autism

Individuals with autism often experience associated conditions that can have an impact on their daily lives. Two common challenges that individuals with autism may face are feeding and eating challenges, as well as chronic sleep problems.

Feeding and Eating Challenges

Feeding and eating problems affect a significant number of children with autism, with around 7 out of 10 children experiencing these challenges. These issues can arise from autism-related hypersensitivities and a strong need for sameness [3].

Some common feeding and eating challenges in individuals with autism include:

  • Selective eating: Individuals may exhibit a limited range of preferred foods and may have difficulty trying new foods or accepting different textures.
  • Sensory issues: Sensory sensitivities can impact the way individuals perceive and respond to certain tastes, textures, smells, or visual aspects of food.
  • Ritualistic behaviors: The need for sameness and routine can lead to specific rituals or patterns around mealtimes, which may impact the individual's willingness to try new foods or accept changes in their eating routine.

It's important for individuals with autism and their families to work with healthcare professionals, such as occupational therapists or registered dietitians, to address feeding and eating challenges. These professionals can provide strategies and support to help expand food preferences, manage sensory sensitivities, and promote a balanced and nutritious diet.

Chronic Sleep Problems and Autism

Sleep problems are another commonly associated condition in individuals with autism. Over half of children with autism, and possibly as many as four in five, experience one or more chronic sleep problems. These sleep difficulties can persist into adulthood and impact various aspects of daily functioning.

Some common sleep problems experienced by individuals with autism include:

  • Difficulty falling asleep: Many individuals with autism may have trouble initiating sleep, which can be attributed to difficulties in self-soothing or regulating their sleep-wake cycle.
  • Nighttime awakenings: Individuals may experience frequent awakenings during the night, leading to fragmented sleep and daytime tiredness.
  • Sleep schedule irregularities: Irregular sleep patterns or inconsistent sleep schedules can contribute to sleep disturbances and impact overall sleep quality.

These sleep problems can have a significant impact on behavior, learning, and overall quality of life. It is recommended that individuals with autism and their families consult with healthcare professionals, such as sleep specialists or behavioral therapists, to address these sleep challenges. Implementing strategies to establish a consistent sleep routine and creating a sleep-friendly environment can help promote better sleep hygiene and improve overall sleep patterns.

By recognizing and addressing these associated conditions, individuals with autism and their families can work towards enhancing their quality of life and overall well-being. Seeking support from healthcare professionals who specialize in autism can provide valuable guidance and strategies to manage these challenges effectively.

Transitioning into Adulthood with Autism

Navigating the transition from high school to adulthood can be particularly challenging for individuals with Autism Spectrum Disorders (ASDs) and their families. This period is marked by significant changes and can present unique difficulties for those on the autism spectrum. Let's explore some of the challenges faced during the post-high school transition and the importance of family roles and transition support.

Challenges Post-High School

For students with ASD, the transition out of high school often involves a significant loss of services and formal supports, which can be greater compared to students with other disabilities. This loss can leave individuals with ASD and their families feeling uncertain and overwhelmed. The reorganization of the family system and the difficulty with change, which is a characteristic of autism, can further complicate this transition.

During this period, individuals with ASD may encounter difficulties in finding suitable employment, accessing postsecondary education, and establishing independent living arrangements. The shift from a structured school environment to the less predictable adult world can be particularly challenging for individuals on the autism spectrum.

Family Roles and Transition Support

Families play a crucial role in supporting their children with ASD during the transition into adulthood. The family environment has a significant impact on developmental trajectories, with high levels of maternal warmth and positive remarks associated with reductions in autism symptoms and behavior problems [6]. Conversely, high levels of criticism can predict increases in behavior problems and autism symptoms.

Parental expectations and involvement in education have been found to be strong predictors of academic achievement for individuals with ASD. Parents who have high expectations for their child's postsecondary education are more likely to be involved in advocating for postsecondary educational and vocational opportunities. Families often take on the role of advocating for their children, seeking out appropriate resources and opportunities to support their transition into adulthood.

Parenting a child with ASD can be associated with significant stress and higher levels of parenting stress compared to parents of children without disabilities. The financial burden of raising a child with ASD can also be substantial, especially in states with low Medicaid spending for children with disabilities. Families may also face external factors, such as unsupportive social networks and potential criticism from family members and friends, which contribute to parental stress.

To provide effective support during the transition, it is essential for families to have access to comprehensive resources and services. These resources may include educational and vocational support, mental health services, and assistance in navigating social situations. Additionally, providing emotional support and understanding can greatly benefit both individuals with ASD and their families during this challenging period.

By recognizing the challenges faced during the post-high school transition and understanding the critical role of families in supporting individuals with ASD, we can work towards creating a more inclusive and supportive environment for those on the autism spectrum as they navigate their journey into adulthood.