Understanding Autism Aging Out

Navigate autism aging out with our guide on transitions, support services, healthcare challenges, and strategies.

reuben kesherim
Ruben Kesherim
April 28, 2024

Understanding Autism Aging Out

Transitioning to Adulthood

The transition from adolescence to adulthood can be a challenging period for individuals with autism, often known as "autism aging out". This transition involves a change in services and supports, which can have significant impacts on an individual's life.

Importance of Transition Planning

Transition planning is a crucial part of the support provided to individuals with autism. According to Autism Speaks, students with autism have the right to receive comprehensive transition services. These services must be included in the Individual Education Program (IEP) process at age 16, but ideally, they should begin as early as 12 or 14 years old.

The funding and services available through the Individuals With Disabilities Education Act (IDEA) are not accessible once the student receives a high school diploma or ages out of the school system. Hence, it is of utmost importance to set up these services while the student is in the school system.

Transition planning for children with autism typically begins when they are about 14 years old, with the focus shifting to specific planning and goal-setting for their transition into young adulthood. Goals may include post-secondary education, vocational training, and independent living.

Post-High School Challenges

When children with autism reach the age of 21 or 22, they lose the educational supports and services provided under IDEA [1]. This loss of services often leads to various challenges as they navigate their way into adulthood.

Research from Sonderly.io indicates that more than half of students with autism aging out of education systems have poor outcomes as adults. Less than 30% are employed and less than 20% have long-term personal relationships.

Individuals with autism may also experience difficulties in shifting attention from one task to another or in changes of routine. This could be due to a greater need for predictability, challenges in understanding what activity will be coming next, or difficulty when a pattern of behavior is disrupted.

Navigating these challenges can be difficult, but with proper planning and support, individuals with autism can transition into adulthood successfully. It is imperative that programming for teens and young adults is guided by long-term goals and preparation for adulthood.

Employment and Education Outcomes

Upon examining the transition into adulthood for those with Autism Spectrum Disorder (ASD), it's crucial to consider employment and education outcomes. These factors significantly influence the quality of life and independence for individuals aging out of autism.

College Attendance and Employment Rates

For youth with an ASD, post-high school outcomes show that 34.7% had attended college, and 55.1% had held paid employment during the first 6 years after high school. However, more than half of the youth who had left high school within the past two years had no participation in employment or education. ASD youth had the lowest rates of participation in employment and the highest rates of non-participation compared with youth in other disability categories.

Outcome ASD Youth (%)
College Attendance 34.7
Paid Employment 55.1
No Participation >50

These statistics indicate that ASD youth face significant challenges in securing employment and pursuing further education.

Factors Affecting Postsecondary Participation

There are several factors associated with postsecondary participation among ASD youth. Higher income and higher functional ability were associated with higher adjusted odds of participation in postsecondary employment and education. However, it's important to note that many ASD youth have poor postsecondary employment and education outcomes, especially in the first 2 years after high school.

Factors Association
Higher Income Higher Postsecondary Participation
Higher Functional Ability Higher Postsecondary Participation

Moreover, previous studies indicate that ASD youth have low rates of employment and postsecondary education participation, with 40% or fewer ever attending college and very few receiving a degree. This shows a pressing need for interventions and strategies to improve these outcomes for ASD youth aging out of structured school services.

Support Services and Living Arrangements

Support services and living arrangements play a crucial role in the life of individuals with autism as they transition into adulthood. It's essential to understand the concerns of parents and the need for creating supportive environments.

Parental Concerns and Involvement

Parents of children with autism, including those with high-functioning autism or Asperger's, express concern about their children's need for support after reaching a certain age due to issues like ADHD, anxiety, and sensory problems. Transition planning typically begins when children with autism are 14 years old, with the focus shifting to specific planning and goal-setting for their transition into young adulthood. Goals may include post-secondary education, vocational training, and independent living [1].

Research indicates that over half of students with autism have poor outcomes as adults after aging out of education systems. Less than 30% are employed and fewer than 20% have long-term personal relationships. These figures highlight the need for comprehensive planning focused on communication, independence, community access, and job development.

Creating Supportive Environments

Creating supportive environments is crucial in accommodating adults with autism. Some parents have taken it upon themselves to create shared living arrangements or group homes for their adult children with autism. These arrangements often include live-in caregivers, shared expenses, and a sense of community.

There is a call for more living, working, and support options for adults with autism once they age out of special schooling and services. It is important for adult self-advocates and parents to be part of the process in determining these options.

In conclusion, addressing parental concerns and creating supportive environments are crucial steps toward empowering individuals with autism as they transition into adulthood. While challenges exist, with the right support and resources, these individuals can lead fulfilling lives.

Insurance Mandates and Access to Care

Insurance plays a crucial role in ensuring that individuals with Autism Spectrum Disorder (ASD) can access the necessary care and services. However, the coverage and benefits can vary significantly depending on state mandates and insurance policies.

State Mandates on ASD Coverage

From 2001 to 2017, 46 states in the United States passed mandates requiring insurance companies to cover services associated with Autism Spectrum Disorder (ASD). This has significantly improved the access to essential care for individuals with ASD.

However, these mandates vary significantly in their generosity, defined as the volume of services required to be provided and the age of individuals eligible for the services. While some states require benefits that ensure adequate medical care for all individuals with ASD, others have more limited benefits, with program eligibility cut-off before the age of 10 or capping yearly covered medical costs far below what many families spend each year on care.

Interestingly, the passage of these ASD insurance mandates and the differences in their generosity are influenced by the ideology of state residents and politicians. States with more liberal citizens and increased Democratic control of state government are more likely to have generous benefits.

Disparities in Insurance Benefits

Despite the progress in state mandates on ASD coverage, disparities in insurance benefits persist. Democratic control of state government and liberal citizen ideology are significant predictors of the generosity of initial ASD insurance mandates. On the other hand, factors such as percent uninsured, employer-sponsored insurance, health interest groups, and legislative professionalism have mixed and less consistent effects on the generosity of ASD insurance mandates.

This disparity in benefits can create significant challenges for individuals with ASD and their families, particularly as they navigate the transition to adulthood, often referred to as 'autism aging out'. Access to adequate insurance coverage is critical to ensure that these individuals can continue to receive the necessary care and services.

As we continue to strive for equity in ASD care, it's essential to advocate for comprehensive and inclusive insurance mandates that will ensure all individuals with ASD, regardless of their age or state of residence, have access to the necessary care and services.

Healthcare Challenges

The transition from adolescence to adulthood presents unique healthcare challenges for individuals with autism spectrum disorder (ASD). Two key issues include access to specialists and the impact of stigma on care.

Access to Specialists

One significant challenge faced by individuals with ASD and their families is access to specialist care. According to a study published on NCBI, families living outside metropolitan areas have less access to care for ASD than those in urban areas. This is often due to a shortage of specialists, resulting in a service supply shortage, clinician burnout, and long wait times for diagnosis and treatment.

The disparity in access to specialist care is evident when examining the number of child and adolescent psychiatrists per 100,000 individuals across various regions:

Region Child and Adolescent Psychiatrists per 100,000
Idaho (Rural) 5
District of Columbia (Urban) 60

The number of developmental-behavioral pediatricians per 100,000 children also varies significantly:

Region Developmental-Behavioral Pediatricians per 100,000
Idaho (Rural) 0.2
District of Columbia (Urban) 4

What's more, physician knowledge and training on treating autistic individuals is often lacking, leading to delayed or inaccurate diagnosis and inadequate healthcare for these individuals.

Impact of Stigma on Care

Stigma around ASD can also have a significant impact on access to healthcare. As noted in the NCBI study, stigma can contribute to feelings of rejection and isolation among parents of autistic children and can prevent individuals with ASD from accessing healthcare services at all stages of life.

Stigma is particularly pronounced among racial/ethnic minorities and immigrant parents, leading to a lack of acknowledgement of developmental disabilities in some cultures. This can further exacerbate the challenges faced by these individuals when it comes to receiving adequate healthcare.

Despite improvements in insurance coverage for ASD services, financial barriers still persist, particularly for families with lower socioeconomic status. The high cost of healthcare for individuals with ASD often limits their access to recommended services, despite all 50 US states mandating private health insurance companies to cover diagnostic and treatment services for ASD.

Overall, these healthcare challenges underscore the need for strategies aimed at improving access to specialist care and reducing stigma, to ensure that individuals with ASD receive the necessary support and care as they transition into adulthood.

Strategies for Successful Transitions

As individuals with autism age out of childhood and transition into adulthood, effective strategies are needed to help them navigate this critical phase. In this section, we discuss effective transition planning techniques and the use of visual strategies to facilitate successful transitions.

Transition Planning Techniques

Transition planning for children with autism typically begins when they are 14 years old, with the focus shifting to specific planning and goal-setting for their transition into young adulthood. Goals may include post-secondary education, vocational training, and independent living.

In the context of a school day, up to 25% of the time may be spent engaged in transition activities for individuals with Autism Spectrum Disorder (ASD). These activities include moving from classroom to classroom, coming in from the playground, going to the cafeteria, putting personal items in designated locations, and gathering materials to start working.

Transition strategies are techniques used to support individuals with ASD during changes in or disruptions to activities, settings, or routines. These strategies, which can be presented verbally, auditorily, or visually, attempt to increase predictability for individuals on the autism spectrum and create positive routines around transitions.

Visual Strategies for Transitions

Visual strategies, such as visual timers, visual countdowns, visual schedules, and the use of objects, photos, icons, or words, can assist individuals with ASD in preparing for and transitioning between activities. These strategies help increase predictability and decrease transition time and challenging behaviors [2].

The consistent use of visual schedules with individuals with ASD can assist in successful transitions. Visual schedules allow individuals to view upcoming activities, understand the sequence of activities, and increase overall predictability. They have been shown to decrease transition time and challenging behaviors during transitions and increase student independence [2].

By exploring these techniques, parents, caregivers, and educators can better understand autism aging out and develop strategies to support young adults with ASD during this critical transition period. The use of these strategies can help individuals with ASD navigate their transitions successfully, leading to improved outcomes in their post-secondary education, employment, and independent living.


[1]: https://childmind.org/article/aging-out-when-kids-with-autism-grow-up/

[2]: https://iidc.indiana.edu/irca/articles/transition-time-helping-individuals-on-the-autism-spectrum-move-successfully-from-one-activity-to-another.html

[3]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3362908/

[4]: https://sonderly.io/services/catalogue/

[5]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6534322/