Autism and Lifelong Identity: Can You Lose Your Diagnosis?

There is a common misunderstanding about the nature of autism and its diagnostic criteria. The question often arises, if you used to fit the diagnostic criteria for autism but have since learned strategies to appear relatively normal and no longer meet those criteria, do you still get to call yourself autistic? This article aims to clarify these misconceptions and provide a clearer understanding of autism and its lifelong nature.

Understanding Autism and Its Lifelong Nature

Many individuals, especially those with Asperger Syndrome (now subsumed under the broader term autism spectrum disorder (ASD) or autism level 1), believe that once diagnosed, their condition is permanent and cannot change. This belief stems from the misunderstanding that autism is about a fixed set of characteristics that are inherent from birth and do not change over time.

However, the reality is that people on the autism spectrum may learn coping strategies and social skills that help them navigate social situations more effectively. These strategies allow them to function in ways that are not inherently characteristic of autism. But this does not mean that the core of their autism has changed or been eliminated. The brain's wiring characteristic described by Asperger Syndrome stays the same, and therefore, one's identity as autistic remains intact.

Diagnosis and Lifelong Identity

The question of whether someone can “no longer qualify” for a diagnosis of autism is fundamentally flawed. Let's break this down:

The criteria for diagnosing autism are rooted in observing patterns of behavior that are indicative of the condition. Once diagnosed, it is highly unlikely that these patterns would completely disappear, especially if the individual has autism. If someone is diagnosed with autism, it is because those patterns of behavior are attributed to the condition.

If a person is no longer meeting the criteria, it could be because they have developed effective coping mechanisms or treatment plans. However, this does not mean their underlying neurodevelopmental condition has changed. It suggests improvements in how they manage or express their symptoms, rather than a change in the nature of the condition itself.

Diagnosis and Language of Identity

Language and identity are closely tied. For many people, the term "autistic" is a part of their identity and a descriptor of how they experience the world. It is not just a medical label but a way of expressing their sense of self. When someone loses their diagnosis, it often feels like a loss of identity, which can be a valid and emotional experience.

Saying "you are not autistic" instead of "you don't have autism" is an important distinction because it acknowledges the person's lived experience and the impact of their diagnosis on their life. It is a way of respecting an individual's sense of self and their journey through the world.

Common Misconceptions about Autism Diagnosis

There are several common misconceptions about the nature of autism and its diagnosis:

Autism is a fixed state: This is a widespread belief but is incorrect. Autism is a neurodevelopmental condition that can be mitigated and managed, but the core characteristics persist.

Diagnosis is definitive: While a diagnosis can provide clarity and support, it is not set in stone. If someone is re-diagnosed, it does not necessarily mean the first diagnosis was incorrect, but rather that the individual may have developed new coping strategies or mellowed their symptoms over time.

Emergence of LGBTQ and Feminine Diagnoses: Autism can present differently in LGBTQ and female individuals, and diagnostic tests do not always consider these variations. Additionally, co-occurring conditions like ADHD, PTSD, or dissociative identity disorder can complicate the diagnostic process and mask or alter the expression of autism symptoms.

Conclusion

The nature of autism as a lifelong condition means that individuals can continue to identify as autistic even if they have learned strategies to navigate social situations. The diagnostic criteria may change over time, but the underlying neurological differences remain. It is essential to respect and understand that a diagnosis of autism is not a life sentence but rather a descriptor of an ongoing condition that can be managed through support and strategies.