The “Lost Generation” of Autistic Adults

By Rachel Freeman

How does autism come to be diagnosed in adulthood? What impact does a diagnosis have after decades of living with undiagnosed autism? 

Autism used to be a rare diagnosis.  Ever since the definition of autism was expanded to encompass Asperger’s Syndrome and became autism spectrum disorder, it is estimated to affect 1-2% of the population.  Many clinicians have not been taught what this diagnostic change looks like in their practice.  Because many people’s symptoms were either misdiagnosed in childhood or were not recognized at all, it has become increasingly common to receive a diagnosis of autism in adulthood. 

Autism is a developmental disorder that has to do with differences in brain wiring and is NOT a mental illness. However, living with autism—especially if it is not identified for 40 or 50 years of one’s life—can contribute to traumatic experiences and feelings of anxiety, low self-worth, and isolation.  It is those feelings, left unaddressed, which can then lead to mental illnesses such as anxiety and depression. 

The years that can pass between the time someone suspects they are autistic to the time they receive a diagnosis can leave a person feeling misunderstood, ignored and even dismissed by health professionals. The presence of other diagnoses, such as mood disorders, can complicate the diagnostic process.  Many late-diagnosed adults discover their autism in the process of receiving treatment for anxiety or depression, or while their child is being diagnosed with autism. Many people seek a diagnosis after a lifelong feeling of being somehow different from others.  

Autistic people may: 

  • Find it difficult to understand facial expressions or tone of voice 
  • Find it difficult to understand social rules and to form friendships 
  • Be under- or over-sensitive to sound, touch and light (this can range from subtle to debilitating)
  • Have difficulty regulating their own emotions, and when emotions are high, find it difficult to think clearly and make decisions
  • Like routine and order and respond to change with a high level of anxiety
  • Place a high value on honesty, to the point of being blunt
  • Appear to be insensitive to others’ feelings 
  • Appear to behave strangely at times
  • Require very specific directions when doing something new
  • Struggle to find and maintain employment, despite intelligence and work abilities

Autism symptoms can vary vastly from person to person and require different levels of support.  Resilience factors can be present that help one cope with symptoms or lessen their impact.  For instance, the way one’s parents dealt with the symptoms in childhood can have a major impact on one’s self-worth and coping ability. 

The process of being diagnosed and its aftermath can feel like an emotional rollercoaster, but it can also change one’s life for the better.  Benefits of getting a diagnosis can include: 

  • Recognizing what has been wrong all these years, and realizing it’s not your fault
  • Being able to let go of impossible struggles and reframe one’s self-identity
  • A period of self-discovery, self-acceptance and even a sense of belonging as one interacts with others in the autistic community
  • Being able to be up-front about who you are and what you need from yourself and others
  • Helping you and those close to you understand why you may experience certain difficulties and what you can do about them.  It may correct a previous misdiagnosis and mean that any mental health problems can be better addressed. 
  • Unlocking a different version of yourself that has not had a chance to develop

You don’t need to be formally diagnosed, have it “on the record,” or share that diagnosis with others in order to experience benefits.  Sometimes just knowing you have autism can help make sense of life experiences, explain what you may have previously viewed as character flaws, and lead to discovering ways to support yourself with appropriate coping skills that reduce the negative effect of symptoms on your life, while increasing the effects of autism’s gifts.   A life with undiagnosed autism can seem full of failures to achieve goals that seem easy for others to achieve.  However, when you look at what you have been able to accomplish so far despite undiagnosed autism, it can be amazing. 


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