Managing Expectations

The Expectation Gap: Late-Diagnosed ADHD and Autism in Adults

A growing number of adults are receiving a diagnosis of both ADHD and autism (AuDHD) later in life, often after years of struggling with unexplained challenges. This late diagnosis can bring both relief and grief as individuals reframe their life experiences through the lens of neurodivergence.

Diagnostic Delays and Barriers

Despite increasing awareness, ADHD and autism are still often viewed as childhood conditions. Many adults, especially women, face lengthy diagnostic delays. Key barriers include:

- Compensating and Masking: Individuals with AuDHD often develop coping strategies to hide their struggles, making it harder for others to recognize their need for support.

- Overlapping Symptoms: The complex interplay of ADHD and autism traits can make it challenging for professionals to accurately identify and diagnose co-occurring AuDHD. 

- Lack of Awareness: Limited understanding of how ADHD and autism present in adults, particularly in women, contributes to underdiagnosis.

As a result, the average age of AuDHD diagnosis is well into adulthood, with an even longer delay for women.

The Expectation Gap and Burnout

Living with undiagnosed AuDHD creates a painful "expectation gap" between what individuals and society believe they should be capable of and their actual performance and functioning. Constantly falling short of expectations can fuel unhealthy perfectionism, self-blame, and a pervasive sense of failure.

The chronic stress of masking and striving to meet neurotypical standards puts adults with late-diagnosed AuDHD at high risk for autistic burnout - a state of complete exhaustion and loss of skills. Reduced executive functions from co-occurring ADHD can exacerbate and prolong this burnout.

Parents Receiving Late Diagnoses

Psychologists and occupational therapists in my network have noticed an increasing trend of parents receiving their own AuDHD diagnoses after their child is identified as neurodivergent. Pursuing an evaluation often comes from recognizing their own lifelong challenges in their child's struggles.

For many parents, this late diagnosis brings a mix of emotions - relief at having answers but also grief over lost time. They now face the complex task of unmasking and redefining their identity beyond parenthood. Many have spent years camouflaging their traits and focusing primarily on their caregiver role.

However, embracing one's neurodivergent identity is a crucial protective factor for the whole family. Parents who are able to unmask and regulate themselves provide invaluable co-regulation for their AuDHD child. They can draw on their own experiences to empathize with and support their child's unique challenges.

Conversely, attempting to suppress neurodivergent traits often leads to increased stress and dysregulation that can negatively impact the parent-child relationship. Children with AuDHD often struggle with self-regulation and rely heavily on co-regulation from a calm, regulated adult to develop these skills.

While undoubtedly challenging, pursuing a late diagnosis offers parents a powerful opportunity to break free from the expectation gap, embrace their authentic self, and show up as the best possible support for their child. With a foundation of self-understanding and acceptance, parents can guide their children towards resilience and thriving.

Increasing Prevalence and Awareness

The prevalence of AuDHD diagnoses in adults is rising rapidly due to several factors:

- Growing awareness of how ADHD and autism present in adults

- Increased self-advocacy and neurodiversity acceptance 

- Improved diagnostic tools and training for clinicians

- More adults seeking answers after their child's AuDHD diagnosis

While some express concern about overdiagnosis, experts argue we are simply catching up after decades of underrecognition, especially for women and other marginalized groups. Continued efforts to improve awareness, reduce stigma, and increase access to affirming support are crucial.

Moving Forward

Receiving an ASD, ADHD or AuDHD diagnosis in adulthood is a profound, life-changing experience. Processing the impact of late diagnosis takes time and often benefits from professional support. By embracing their unique strengths and needs, adults with AuDHD can begin to heal from the expectation gap, build self-acceptance, and redefine success on their own terms. In doing so, they lay the foundation for a more authentic, fulfilling life for themselves and the next generation.