Neurogrief: The Complex Grief After a Late Autism or ADHD Diagnosis

When someone realizes they are neurodivergent, especially later in life, it can naturally bring up a powerful mix of emotions. To describe this experience, Danielle Sheppard, LMFT, coined the term neurogrief.

Understanding Neurogrief

Neurogrief refers to the complex emotional process that can arise after a late autism or ADHD diagnosis, or when someone begins to self-identify as neurodivergent. At first, some people feel relief, clarity, or even elation, while others may feel sadness, overwhelm, or disconnection. 

As the grieving process unfolds, a person may begin to re-examine their past, present, and future through this new understanding. For many Autistic and neurodivergent adults, this realization reframes their entire life story. 

Reframing Your Story

Individuals often become painfully aware that if they had known about their neurodivergence sooner, they might not have felt so misunderstood or broken. Moments that once felt like personal failures may now be understood as unmet needs, lack of accommodations, or environments that were never designed with them in mind. 

They may begin to question many aspects of their life. For example, they might wonder whether burnout, missed opportunities, or lost time could have been avoided. This can lead to a deep sense of grief around these losses. Some may even feel enraged and blame others, like their parents or school system, for not recognizing their needs.

These emotional ups and downs are a natural part of the neurogrief process.

Neurogrief Is Not a Disorder

Neurogrief is not a step-by-step process. Instead, it often feels like waves of emotions and thoughts that come and go over time. These may include:

• Denial
• Relief
• Anger
• Sadness
• Anxiety
• Guilt
• Blame
• Forgiveness

Healing happens as a person allows themselves to feel and work through these experiences.

Importantly, neurogrief is not a disorder or pathology. It is a natural part of identity development that occurs after a person realizes they are neurodivergent.

The Ebb and Flow of Neurogrief

Much like how grief over the death of a loved one can resurface years later, neurogrief may appear long after an autism or ADHD diagnosis. For example, someone might not get a promotion or may experience the end of a relationship, which can trigger grief about how their life path might have been different with proper support. 

Like other forms of grief, neurogrief does not have a clear endpoint. It is an ongoing journey of identity development.

Getting Stuck in Neurogrief

For some people, neurogrief can feel overwhelming or persistent. It’s not uncommon for neurodivergent individuals to get stuck in “what if” thinking, such as:

• “What if my parents had known sooner?”
• “What if my teachers had accommodated me?”
• “Would my life have been easier or happier?”

Support from a therapist or trusted professional can help a person process these complex feelings and gradually gain perspective. Over time, this support can help them feel less stuck and more able to move forward.

People may need different levels of support at different times in their lives as they process neurogrief.

Neurogrief Often Involves Reevaluating Your Life

Neurogrief is layered and complex. As part of this process, a person often rethinks their past while reflecting on what they want now and in the future.

Past: “What could have been”

This form of grief centers on the past.
People may mourn the lack of support, understanding, or opportunities they experienced—things that might have been possible with earlier diagnosis or awareness.

This may include:

• Learning environments that didn’t meet their needs
• Friendships or relationships that never fully formed
• Behaviors or struggles that were misunderstood or judged
• Years spent feeling “different” without explanation

For many late-diagnosed Autistic adults or ADHDers,  this realization brings both clarity and deep sadness.

Present: “Who am I now?”

This form of neurogrief centers on the present.

Many neurodivergent adults have spent years masking or adapting themselves to meet neuronormative expectations. After a diagnosis or self-realization, they may begin to question long-held beliefs about who they are. This shift can feel disorienting, as the story they once told about themselves starts to change.

The process is often layered and complex. Many people benefit from having a therapist who understands neurogrief and can help them navigate it with compassion and clarity.

As a therapist, developing a deeper understanding of neurogrief and the clinical skills to support it helps you show up for your clients in more effective, neuroaffirming ways. 

Future: “Who am I becoming?”

This form of grief looks toward the future.

Some people realize that certain roles, expectations, or life paths may no longer feel right given their new understanding of themselves. Letting go of long-held expectations can be difficult, even when those expectations were never truly supportive. This shift can be especially challenging for high-masking Autistic adults and ADHDers.

At the same time, this awareness can create space for choices that are more aligned with a person’s values and neurodivergent needs.

Reflection Moment

As you think about your current or past neurodivergent clients or loved ones, consider:

(1) Who might be experiencing neurogrief without having the language to describe it?

(2) How might naming it change the way both of you understand their experiences?

How Neurogrief Shows Up in Clinical Practice

For mental health professionals, neurogrief can be easy to overlook or misinterpret.

It may not be “just depression”

Many Autistic or neurodivergent clients diagnosed with depression or anxiety may actually be experiencing neurogrief. 

It can appear subtle

Neurogrief doesn’t always look like sadness or tears, which is often why it’s missed. It is nuanced and complex, and can go unrecognized by clinicians.

When Neurogrief Goes Unrecognized

If neurogrief isn’t identified, it can deepen distress, burnout, and disconnection. Over time, this can significantly impact daily life, affecting work, relationships, and a person’s overall ability to function.

Neurogrief is often misdiagnosed as a mood or anxiety disorder. When this happens, a person may receive treatments that don’t address the underlying identity-related grief. Unfortunately, if those interventions aren’t effective, the neurodivergent individual may then be labeled as having “treatment-resistant depression”.

Meanwhile, the deeper grief remains unacknowledged. Confusion, self-doubt, and emotional pain can continue, leaving the person feeling stuck and misunderstood.

The Clinician’s Role in Supporting Neurogrief

As a clinician, you play a key role in helping clients identify and process neurogrief. Because this concept is relatively new, many clients and even clinicians may not be familiar with the term. Simply naming your client’s experience as neurogrief can be a powerful first step toward healing.

If you work with neurodivergent teens or adults, especially those diagnosed later in life, you are almost certainly encountering neurogrief in your office, whether it has been named or not.

To provide effective support, continuing education (CE) on neurogrief in late-diagnosed Autistic and ADHD adults is essential for mental health professionals.

Key Takeaways

• Neurogrief is real, layered, and valid.
• It is often unrecognized or misdiagnosed.
• When it is recognized, it can open the door to deeper self-understanding, forgiveness, and healing.
• For many neurodivergent adults, naming neurogrief is the first step toward reclaiming their story.