Late diagnosis of autism: Why it takes so long

Autism diagnosis in adulthood

More and more adults are only receiving an autism diagnosis in adulthood – often after decades of “masking” and numerous misdiagnoses. What this late diagnosis means for those affected and why the waiting times are dramatic.

Misunderstood for years

Many adults with autism have spent decades trying to fit in. They have learned to fake eye contact, memorize social rules and hide their excessive demands – experts call this phenomenon “masking”. The result: depression, anxiety disorder, borderline or ADHD are often diagnosed, while the actual autism remains undiagnosed. Women and girls in particular are overlooked, as they are often better able to compensate.

Many of those affected experience an autism diagnosis in adulthood as a liberation and a new start. PD Dr. Schöttle from the University Medical Center Hamburg-Eppendorf (UKE) explains in the AOK magazine: “The diagnosis finally gives a name to what has always been there. Instead of “Why am I so different?” it’s suddenly “I’m not broken, I’m autistic.” This realization can lead to more self-acceptance, targeted therapy and better stress management.

The problem: Over two years waiting time
The downside: In Germany, adults are currently waiting over two years for a diagnostic appointment. Many practices have closed waiting lists. The VdK social association is urgently calling for more diagnostic services. A glimmer of hope: the “BarriereASS” project funded by the Federal Joint Committee is testing new care models at three locations in 2025.

Conclusion: Diagnosis as an opportunity
An autism diagnosis in adulthood is not a catastrophe, but often the beginning of a more self-determined life. Those affected report: “I finally understand myself.” Despite long waiting times, the path to a diagnosis is worthwhile for more clarity, appropriate support and genuine self-acceptance.

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Late diagnosis of autism: When adults finally find answers