What Is Neurodiversity?

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Many neurodivergent individuals diagnosed later in life experience grief.

Anger and sadness are the main emotions mentioned during this process.

Getting to a phase of acceptance is long and difficult, as grief can last for years.

More and more adults are finding out about their diagnosis of ADHD, autism, or dyslexia later in life. While many people are finally getting the answers and the help they need, many are also going through what many late-diagnosed neurodivergent individuals have defined as "post-diagnosis grief."

This term became popular on social media platforms before research started looking into it, but a thematic analysis of many lived experiences of neurodivergent individuals in a new study shows a convergence in themes and phases of grief that many late-diagnosed adults experience to this day.

Theme 1: The Life I Could Have Had

This first theme resonates with my own experience, and with many others who have been diagnosed later in life with any kind of condition. It is a phase that usually comes right after the diagnosis and the initial disbelief - for many, it also comes after trying therapy, or effective medication.

This phase includes an understanding that one’s mental health and sense of well-being would have been better with earlier identification, that one would have been able to be further ahead in their education or career with earlier support, and that one would be able to lead the life they want if they had the right sense of self-understanding earlier.

Often, just knowing that your brain may work a bit differently can help devise life strategies built around those difficulties. Instead, many people who don't know they are neurodivergent desperately try to fit into a mold that was not made for them. This creates feelings of failure and exhaustion. It comes as no surprise that people diagnosed later in life tend to have lower self-esteem than individuals who were diagnosed as children for the same condition.

The first thing that a person usually grieves is the time lost struggling without help. It's the time spent feeling low, looking for answers. The life that could have been was perhaps one of the hardest themes I've had to overcome in my own journey.

Theme 2: Reappraisal of The Younger Self

When we first engage in thinking about the life we could have had, we often end up thinking about the one that we actually lived, and start reappraising the experiences of our younger selves in a new light. With new knowledge, comes new self-understanding.

This was typically inclusive of sadness and anger observed about childhood experiences, which individuals re-evaluated post-diagnosis, shifting from shame and self-blame for difference and disobedience to blaming others for abuse, ableism, and/or bullying. This can also come as a positive reappraisal, and an understanding that any shortcomings we might have had when we were younger were, in fact, not our fault, but due to a different neurological wiring.

This reinterpretation of memories takes time, it brings up intense emotions, and can even alter existing relationships or an existing understanding of the world. While many people mentioned having a lot of feelings of anger associated with this phase, I found that reappraising my childhood and adolescence was a more peaceful experience than going through the first phase. During my whole life, I had tried to understand how my brain was different, and finally, the diagnosis brought me that last piece of the puzzle that just "clicked."

What Is Neurodiversity?

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Theme 3: Feelings of Gratitude

People reported gratitude and happiness for the new sense of self-understanding they observed post-diagnosis, as this allowed them to understand their past, present, and future through a new lens. It provided understanding for differences and discouraged shame for traits associated with their neurodivergence.

Many individuals also mentioned seeing their neurodivergence in a new, positive light, going on the complete opposite end of anger and sadness. What was seen as a disability is now seen as a superpower, neurodivergence is reframed as positive, and people expressed that their success was due to their neurodivergence, not despite it. They may also start preferring the company of other neurodivergent people, because "they get it", which can also be accompanied by "us vs them" thinking that leads to demonizing non-neurodivergent individuals.

While reframing one's neurodivergence in a positive light can have beneficial effects for one's own self-esteem, and can compensate to an extent for years of low confidence, it can also give a false sense of confidence that disregards the realities of living with a neurodevelopmental condition.

Theme 4: Post-Diagnosis Burnout

This includes individuals reporting experiences of burnout following assessment, a profound sense of exhaustion due to the intensity of assessments, and the trauma(s) this may bring up. It also includes the post-diagnosis support, which often leaves individuals feeling lost and frustrated. Many people also report that their symptoms become stronger after the diagnosis.

Symptom regression is a common theme that is often associated with late diagnoses, especially in individuals with autism or ADHD. A new understanding of one's functioning can suddenly shake the very foundations of what we knew was true. This requires a lot of cognitive and emotional labor, which can reduce the energy people put into masking and adapting to the environment. Hence, a return of the symptoms.

For me, it was the realization that whatever struggles I was facing, they were not going to go away. That there was no "trying harder" that would make me somehow non-ADHD. With this reflection, I gradually stopped spending so much energy on the compensatory mechanisms that had drained me for so long, and I started thinking about how I could go through life in a different way—a way that would be more adapted to my unique needs. During this reflective period, my symptoms felt stronger, and more difficult to control. I would later learn that many others went through the same experience.

In usual grief processes, we lose something, but eventually, something new takes its place, time heals wounds, and we develop new routines without that thing or person that we held dear. But with a diagnosis, there's no new routine that makes things different. We have to live every day with the reminder that our lives are never going to be "normal." Any new routine that we may develop requires additional effort and resources from us, in a time when we feel we do not have anything more to give.

My grief lasted for 3 years. Life felt unfair, and the grief takes time to heal. Eventually, I came out of it with a new understanding of my own neurodivergence, with a newfound appreciation for non-neurodivergent individuals, and, more importantly, with a serene and peaceful love for who I am, regardless of my condition.

It was hard. This process is hard on many people. And it is even harder for those who are not reactive to treatment, or who are in precarious situations. But eventually, step by step, we slowly get out of the cycle of anger and sadness, and start walking towards a better life. One where we do not have to be ashamed about our neurodivergence anymore. One where we can be proud of who we are, without dimming the light of others. A life where we can finally allow ourselves to shine as bright as we possibly can, not because of our neurodivergence, not despite it, but alongside it.

Mair, A. P. A., Gonzalez-Figueroa, M., McConachie, D., Goodall, K., & Gillespie-Smith, K. (2026). Grief, Relief, and Belief: A Social Media Study on Late Identification of Neurodivergence. Autism.

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