The term "Lost Generation" was initially used to describe the generation that came of age during World War I, popularized by Ernest Hemingway. It referenced the disillusionment experienced by many, especially intellectuals and creatives, who lived through the war and its aftermath.
Several decades later, the term was applied to another group. The "Woodstock Generation" typically refers to the Baby Boomers, specifically those who were young adults in the 1960s and 1970s during the time of the famous Woodstock Music Festival in 1969. They are sometimes referred to as the "Lost Generation" in a cultural or societal context, as they challenged many conventional norms and values during a time of significant societal upheaval.
In the context of mental health, the term "Lost Generation" was coined in a seminal 2015 paper published in The Lancet Psychiatry to refer to adults with autism spectrum disorder (ASD) who were not diagnosed as children. More recently the phrase has been broadened to include adults who have been retrospectively diagnosed with other developmental and mental health disorders, such as attention deficit/hyperactivity disorder (ADHD) and bipolar disorder.
The Lost Generation in Mental Health
The "lost" mental health generation primarily comprises individuals who were children before the late 20th century, a period when awareness and understanding of ASD, ADHD, and bipolar disorder were significantly less than today and diagnostic criteria were not precise -- or they were non-existent (e.g., the term "minimal brain dysfunction" was commonly substituted for ADHD). During this time, these conditions were often misdiagnosed as behavioral issues or personality traits, leading to inappropriate treatment or no treatment at all during their formative years.
Notably, the prevalence of autism in children is just under 3%, but neurodivergent traits in the general population (including autism, OCD, ADHD, dyslexia, and others) can be found in as many as 15-20%.
Autistic adults may go unrecognized or be diagnosed late in life, particularly physicians. In one study, 10% of patients at an institution had autism but went unidentified; they never received a proper diagnosis. In fact, autistic adults are about 30 times less likely than children to be diagnosed. The word "autism" didn't appear in the Diagnostic and Statistical Manual of Mental Disorders until 1980.
The Impact of No or Delayed Diagnosis
Individuals who have grown up without a proper diagnosis often struggle with symptoms that were misunderstood or overlooked during their childhood years. This late diagnosis can have significant implications for their social, professional, and personal lives. They might have struggled with school, work, relationships, and self-esteem due to unrecognized symptoms. Not understanding why they felt or acted differently from their peers could have led to feelings of isolation, alienation, and resentment.
Furthermore, these individuals may have missed out on early interventions and treatments that could have improved their quality of life. This could include behavioral therapies, medication, and educational accommodations that are typically more effective when started early in life.
It is a well-documented fact that many adults with conditions like ASD, ADHD, and bipolar disorder have developed various coping mechanisms and strategies to hide their symptoms. This phenomenon, often referred to as "camouflaging" or "masking," involves individuals consciously or subconsciously managing their behavior to fit in with societal norms or expectations.
Masking behavior is particularly common among adults with ASD, including forcing eye contact during conversations, learning to script responses in social situations, or suppressing stimming (self-stimulatory behaviors like hand flapping or rocking). Some autistic individuals may also develop elaborate strategies to avoid situations that could reveal their autism, such as eschewing spontaneous social events where they cannot predict the behavior expected of them.
These behaviors can make it challenging for others, including medical professionals, to recognize signs of autism in adults, contributing to late or missed diagnoses. Also, while masking can help autistic individuals navigate social situations, it often comes at a significant psychological cost. The constant effort to appear neurotypical can be mentally and emotionally exhausting, leading to high levels of stress, anxiety, and even burnout, which can exacerbate mental health issues and contribute to the high rates of depression and anxiety disorders seen in adults with ASD.
In the case of ADHD, adults may develop strategies to manage their symptoms such as using calendars, alarms, and other tools to stay organized. They might also choose careers or lifestyles that accommodate their need for high levels of activity.
For those with bipolar disorder, some individuals may learn to recognize their mood swings and take steps to mitigate their impact. They might isolate themselves during manic or depressive episodes, or they may overcompensate during their more stable periods to maintain their relationships and responsibilities.
While masking and coping mechanisms can make individuals with all three disorders appear neurotypical, they do not eliminate the underlying condition. This highlights the importance of early diagnosis and intervention, so individuals can receive the support they need without having to resort to constant camouflaging. It also underscores the need for societal acceptance and understanding of neurodiversity, which would reduce the pressure on autistic individuals to camouflage their natural behaviors.
Implications for Health Professionals
The rise in adult diagnoses of ASD, ADHD, and bipolar disorder has significant implications for mental health professionals. It underscores the need for improved training and awareness of these conditions in adults, as well as the development of appropriate diagnostic tools and treatment strategies for this population.
Moreover, it highlights the importance of considering these diagnoses when working with adults who present with complex mental health issues, particularly those with a history of unsuccessful treatments.
The "lost" generation of adults retrospectively diagnosed with ASD, ADHD, and bipolar disorder serves as an important reminder of the progress we've made in mental health awareness and diagnosis. However, it also emphasizes the need for continued efforts in improving early detection, intervention, and support for individuals with these conditions, regardless of their age.
Arthur Lazarus, MD, MBA, is a former Doximity Fellow, a member of the editorial board of the American Association for Physician Leadership, and an adjunct professor of psychiatry at the Lewis Katz School of Medicine at Temple University in Philadelphia. He is the author of several books on narrative medicine, including Medicine on Fire: A Narrative Travelogue and Narrative Medicine: Harnessing the Power of Storytelling through Essays.