Meet Josh, a 19-year-old autistic young adult who recently graduated from high school. Josh thrived in the small, structured environment of his school, where individualized support helped him focus on his interests and manage his daily routine. However, the transition to college overwhelmed him with a new set of challenges: large class sizes, unstructured time between courses, and increased social expectations from peers. Not knowing who to talk to, Josh struggled with feelings of anxiety and depression. He started to isolate himself more, and his grades began to drop. He started to doubt his ability to succeed in college.
Life transitions, particularly from adolescence to adulthood, can be a challenging experience for anyone, but for autistic individuals, these periods of change are marked by unique stressors that can directly impact quality of life. (Lee & Shivers, 2019). Autism Spectrum Disorder (ASD) has been characterized by persistent challenges with social communication, restricted interests, and repetitive behavior (APA, 2013). While ASD is typically thought of as primarily a social and communication disorder, it frequently involves significant mental health challenges. Research has shown that autistic individuals face higher rates of co-occurring psychiatric conditions, including anxiety and depression, which often become heightened during times of transition (Lever & Geurts, 2016). While autistic youth may have effectively managed co-occurring psychiatric conditions in highly structured environments like high school, the added stressors of transitions, such as graduating, starting college, or entering the workforce, can worsen psychiatric conditions, leading to behaviors that disrupt their lives and interfere with achieving personal goals.
The Transition to Adulthood: A Unique Set of Stressors
A child turning 18 is expected to assume newfound responsibility overnight. The transition from adolescence to adulthood is often marked with a period of increased responsibility, which could include managing healthcare decisions and finances, pursuing post-secondary education or joining the workforce, and navigating interpersonal and intimate relationships. Structured support becomes limited as these young adults move away from high school to settings that demand increasingly more independence, e.g., college, workforce, or independent living. This becomes a period for youths to seek autonomy and assert their independence.
For transition-aged autistic youth, navigating social relationships can take on new forms. Autistic young adults report perceived challenges with understanding social norms, forming meaningful connections, and managing the complexities of interpersonal or intimate relationships. These difficulties can be further compounded by increasing social expectations during this period, such as collaborating in an academic or work setting. Without adequate support, individuals might feel a sense of isolation and frustration, in turn exacerbating any co-occurring mental issues.
The Importance of Transitional Healthcare Services
Ensuring that these individuals receive the necessary support while maintaining their autonomy becomes imperative.
Health Care Transition (HCT) services are vital for supporting autistic youth as they move from pediatric to adult health care. These services help maintain health insurance, promote independent health management, and improve outcomes like health care knowledge, vocational success, and overall quality of life.
While current federal law mandates that a transition plan be generated by the time the child is 16 years of age, typically earlier as determined by the Individualized Education Plan (IEP) team, there is no formal structure that exists in healthcare to do this. Research indicates that only 21% of autistic youth accessed transitional healthcare services during the transition to adulthood, and just 14% had discussions with their pediatrician about transferring care to an adult provider (Cheak-Zamora et al., 2013). This underutilization highlights a significant lack of access to transitional healthcare services for this population. Healthcare providers need to play a more proactive role in facilitating these transitions.
Primary care and child mental health providers should routinely address the challenges of transitioning into adulthood with autistic patients, including the process of transferring care to adult providers. Families should provide support and advocacy to ensure continuity of care, enabling autistic individuals to navigate these changes with appropriate support (Bennett et al., 2018).
Understanding Co-occurring Psychiatric Conditions in ASD
Autistic individuals experience psychiatric conditions at a significantly higher rate than individuals without ASD. Research has shown that more than 50% of autistic adults will have a reported psychiatric condition throughout their lifetime, which may include anxiety, depression, bipolar disorder, ADHD, and obsessive-compulsive disorder (Croen et al., 2015). As the challenging transition from youth to adulthood begins, these conditions often become exacerbated, hindering the development of independence.
Anxiety and depression are already highly prevalent among transition-aged youths, with the demands of adulthood often outpacing their coping mechanisms, leading to manifestations of behavioral and emotional difficulties (Schraeder & Reid, 2017; Backman et al., 2023). Transition-aged autistic youths are especially susceptible, have reported increased levels of stress during this time, and are found to be most susceptible to anxiety and depression during this period of life (Backman et al., 2023).
Suicidality is a particularly concerning issue among youth and autistic young adults, yet it is often overlooked. Research indicates that autistic individuals face an increased risk of suicidal ideation, largely linked to higher rates of co-occurring psychiatric conditions, particularly depression (O’Halloran et al., 2022).
Substance use has been historically understudied in autistic individuals. Recent literature has identified a higher prevalence of substance use disorders in autistic individuals, suggesting that substance use acts as a maladaptive coping mechanism for social impairments or “self-medication” for unmanaged psychiatric symptoms (Clarke et al., 2016; Butwicka et al., 2017).
Medical providers should provide frequent screening and professional mental health care during the transition to adulthood. Early identification of psychiatric concerns and timely interventions can ensure that autistic youth receive appropriate support through this challenging period.
His parents started to recognize red flags, changes in Josh’s baseline behaviors, and his difficulty keeping up with his responsibilities. Out of concern for his well-being, his parents helped connect Josh with a mental health clinic. At the clinic, an interdisciplinary team consisting of physicians, psychologists, and social workers supported his transition. Together, with Josh’s input, they developed a weekly schedule tailored to his needs, including dedicated times for studying, breaks, and self-care activities. A campus mentor provided guidance in navigating social and academic expectations, offering him a sense of stability and encouragement. Regular counseling sessions helped Josh develop strategic coping mechanisms to manage stress and anxiety. Additionally, ongoing support from a psychiatrist ensured his mental health was closely monitored, allowing adjustments to his care plan, including medications when needed.
Interventions for Mental Health Challenges in Transition-Aged Autistic Youth
Since the transition to adulthood is a particularly vulnerable time for autistic youth, regular mental health screening during this time can be critical to assess for depression, anxiety, suicidal ideation, substance use, or other co-occurring mental health issues. While some autistic individuals might have difficulty communicating or articulating their experiences or emotions, family members or caregivers may provide valuable context in understanding an individual’s mental health needs.
Effective mental health care for transition-aged autistic youth begins with personalized, tailored support that addresses their specific needs and challenges. Early planning is essential. Families, schools, and other care providers need to work together and act as advocates to identify and secure experienced mental health providers.
When mental health concerns are identified, the most effective interventions integrate behavioral therapy, medication when appropriate, structured routines, and community-based support. These approaches address both mental health needs and the broader challenges of transitioning to adulthood.
Research into mental health inventions remains an ongoing effort, but current studies have suggested the benefit of SSRIs (i.e., escitalopram and sertraline, among others) to treat anxiety and depression in autistic adults. Therapeutic techniques have also been shown to be moderately effective at reducing anxiety and depression, specifically cognitive-behavioral therapy (CBT) and mindfulness-based stress reduction. Studies have shown that these approaches can be adapted to meet the individual need for autistic people (Sung et al., 2017).
While more research and clinical advancements are needed to improve strategies for preventing suicidality and addressing substance use, existing interventions offer meaningful improvements in quality of life. Notably, social skills intervention groups have shown a modest impact in reducing suicidality, highlighting their potential as part of a comprehensive approach (Schiltz et al., 2018). With the right support, transition-aged autistic youth can navigate this critical life stage successfully, enabling the youth to thrive as they enter adulthood.
Fundamentally, developing personalized care that incorporates a deep understanding of the specific challenges faced by transition-aged autistic youths becomes essential to improve mental health outcomes during this critical period. Considering the challenges of finding mental health providers, particularly those experienced with ASD, proactive planning and advocacy are essential to secure these resources and support systems early.
After connecting to care and receiving the right support, Josh began to thrive in college. He grew more confident in managing his coursework and balancing daily responsibilities, which led to significant improvements in his grades. Josh also became more socially engaged; he joined study groups and participated in social and interest-based campus events.
A long-time fan of animation, Josh was finally able to explore his passion without feeling overwhelmed. This newfound balance allowed him to connect with peers who shared similar interests, forming meaningful friendships. With the help of a structured routine, regular counseling sessions, and mentorship, Josh gained a stronger sense of control over his college experience and started to truly enjoy this new chapter of his life.
Key Takeaways
- Raising awareness and expanding access to transitional healthcare services for autistic youth is a crucial step toward improving their mental health outcomes.
- Primary care and child mental health providers should universally discuss the stressors of transitioning into adulthood with their autistic patients, including transferring care to adult providers.
- Transition-age autistic youth should be universally screened for mental health conditions like anxiety and depression.
- While more studies are needed to determine ideal treatments for this group, structured, personalized care plans, including psychotherapy, medications, financial, and social support help autistic people and co-occurring mental health conditions.
- With adequate support, autistic youth can thrive as they transition to college or the workforce, gaining confidence, achieving their goals, and building a solid foundation for a successful adulthood.
Abraham Abdulrazzak, DO, is a Resident Psychiatrist at SUNY Downstate Health Sciences University and a Fellow with the Brooklyn LEND (Leadership Education in Neurodevelopmental Disabilities) program at SUNY Downstate. Samuel Jackson, MD, serves as the Clinical Director of Psychiatry at Erie Family Health and Co-Director of Public Psychiatry Education at SUNY Downstate Health Sciences University. For more information, email abraham.abdulrazzak@downstate.edu or samuel.wesley.jackson@gmail.com.
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